tag:blogger.com,1999:blog-70085312767472634042024-03-05T16:40:46.121-05:00Secret RaindropsRA hurts, blogging helpsSecret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.comBlogger22125tag:blogger.com,1999:blog-7008531276747263404.post-69714374633054531312013-05-15T17:06:00.000-04:002013-05-15T17:06:07.072-04:00Prednisone - The Choice<!--[if gte mso 9]><xml>
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<![endif]--><span style="font-size: large;"><span style="font-family: "Garamond","serif"; line-height: 115%;"><span style="font-size: x-large;">Face to face with life & death, present moment & future</span></span></span></h3>
<span style="font-size: large;"><span style="font-family: "Garamond","serif"; line-height: 115%;"></span></span><span style="font-size: x-large;"><span style="font-family: "Garamond","serif"; line-height: 115%;"></span><span style="font-family: "Garamond","serif"; line-height: 115%;"> </span></span><br />
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<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">This morning was one of the worst mornings since December
of 2011. I’ve been tapering Prednisone and I was determined to be off of it
soon. I was willing to deal with the pain that I knew would come. I was
desperate to lose the weight I’ve gained since I started Prednisone February
2012. I recently went down to 5mg/day and I felt the decline in my condition,
day after day, getting worse. It was a feeling of impending doom, like being
killed slowly, through torture. First my wrists, fingers, ankles & feet
started swelling up, the pain became intense and the swelling brought on instant
disability… inability to trust if the joints would support my step, or if I
would drop the coffee mug this time. Would my shoes fit today? Will I be able
to get up & down the stairs from/to my house? Can I get dressed by myself?
I’ve had to loosen up my laces, getting up/down stairs has become a major task
& huge source of frustration as I like to move fast and don’t like depending
on other people for help… Getting dressed is a struggle, makes me feel like a
toddler, who desperately wants to get herself dressed, but lacks the
psychological ability to understand where the leg goes & how do I get this
foot inside the sock… Now my knees & elbows are affected as well, I feel my
neck getting stiffer – if I continue this way I won’t be able to drive the car
(can’t turn the wheel or even open the doors) (this morning I needed two hands
to turn the key to start the car), turning in bed will become a painful task,
sleeping will become a painful chore (I want to sleep, but if it brings on more
pain… why would I?), not to mention household chores… I haven’t been able to
cook, clean, do laundry or tidy up in the recent week or so… it was just a
matter of time I would become bed ridden.</span></div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviAtmOtnBCZs-AI89gzHKcMRnE6HkpzVCYdmq06Fw6n3bEY2IjQBrTHTdfdSS9u6sZf6oa9DycycRiX44PhnCAVEJgchrY8nfhQ9Ym6HCrswpXaSz6h3t-JNlctmeYszdPMOtOm6mVgHy/s1600/sink.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhviAtmOtnBCZs-AI89gzHKcMRnE6HkpzVCYdmq06Fw6n3bEY2IjQBrTHTdfdSS9u6sZf6oa9DycycRiX44PhnCAVEJgchrY8nfhQ9Ym6HCrswpXaSz6h3t-JNlctmeYszdPMOtOm6mVgHy/s400/sink.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Love this necklace, planning to buy it... maybe I will, soon.</td></tr>
</tbody></table>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">So things have gone downhill fast. Back in December 2011 I
struggled to find the will to live. I felt I wasn’t able to contribute to my
childs life, felt like a burden to everyone around me. Today I was face to face
with that same thought. The pain & inability to move devastated me, I was
so angry. I cried and verbalized how much I hated Rheumatoid Arthritis. I was (barely)
standing in the kitchen, holding a bottle of Prednisone in my hands. Faced with
no choice but to have to increase my dose of Prednisone to 10mg a day, in the
hopes it will give me back most of my mobility. I took the pills.</span></div>
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<br /></div>
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<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">The reasons behind my decision are complex, but make
perfect sense to me. I wanted to be off of Prednisone so I could lose the
weight and find the joy in being my genuine self, physically. I wanted to love
myself again, find the real me underneath the fat. In some ways I feel my
weight has affected my decisions in a negative way. I also wanted to be in good
health in case I would be able to start conceiving another child. As I was
holding onto the bottle of Prednisone, tears were rolling down my cheeks, I was
also thinking the mother that I want to be for the child that I already have.
How desperately I wanted him to get the best of me, physically active me. The
woman who is fun, playful, loves to play sports and do everything to make her
son happy, in the present moment. I felt if I allow myself to become disabled
again, my son would lose a mother. Yes I want another child, but the child that
I already have is FAR MORE IMPORTANT than the child I want to have. So those
were the thoughts and the choice became obvious, even if painful in an
emotional way. In some way I had to let go of my dream of having another child,
for now. I have to give my Angel Boy the best of me, even if it means I’ll live
a shorter life because of the long term side effects of Prednisone. I am the
one who is always “preaching” about quality of life, how it should override
everything else in the life of a person with chronic pain and disability. I must take my own
advice now.</span></div>
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<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">Hoping & praying for better times to come.</span></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">****************************************************************************</span></div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMl5ORAS8DGDshCOoWPhFLLBhPMAlamjdX1xOXhkGD8xHJdzwrSrO3Nph619DtnggmdUxreQMompnctWUa9xKVFRQaB3h8sZN_WyPpzuSmZZcpFb9ZPJc8mZMGK2WxahC8x1foXNOlHF7v/s1600/sisu.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMl5ORAS8DGDshCOoWPhFLLBhPMAlamjdX1xOXhkGD8xHJdzwrSrO3Nph619DtnggmdUxreQMompnctWUa9xKVFRQaB3h8sZN_WyPpzuSmZZcpFb9ZPJc8mZMGK2WxahC8x1foXNOlHF7v/s200/sisu.jpg" width="193" /></a><span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;"> </span></div>
<div class="MsoNormal">
<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">~ I’m also currently on Humira which is not working yet, also
supposed to begin Plaquenil next week. Still taking Dexilant for gastritis,
Zyrtec for seasonal allergies, Motrin (lots recently, when things go bad, I take 800mg in the morning & depending on what I have to do, more later in the day), beginning Restasis tomorrow for chronic dry eye.~</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "Garamond","serif"; font-size: 14.0pt; line-height: 115%;">* Refuse to Sink -photo by "klacustomecreations" from Etsy.com</span><span><span class="shopname wrap "></span></span></div>
Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-86060065667882330732013-02-23T22:16:00.001-05:002013-02-23T22:16:22.804-05:00D a R k N e S sDarkness. So much friggin darkness. I need to get out of my head.<br />
<br />
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</xml><![endif]--><span style="font-family: inherit;"></span><span style="font-family: inherit;">I wanted to write a thorough post about what happened at
last weeks GP/Pulmonary doctor appointment, but I have so much on my mind, this
may be a short, to the point kind of post. Some of you may prefer that, but in
general, I write this blog for myself & my family, and prefer longer, more
detailed posts.</span><br />
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;">Last Friday, I went for my follow-up appointment with my
GP/Pulmonary doctor. I parked my car half a block away from the office and under
normal circumstances, that information is completely irrelevant. However, after
I walked the distance from the car to the office and maybe 10 steps of stairs,
my heart was pounding & breathing was labored, my chest/throat felt
tighter. My heart continued to pound the next 40 minutes which is how long I
waited for my name to be called.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;">To my positive surprise, my actual GP wasn’t there (Dr. A$$hat), only the
PA (physician assistant). I was happy as I’d rather deal with him, than my
actual doctor. PA’s name is Chris, so I will call him Dr. Chris from now on. He’s
very likable and has good communication skills, he listens & validates all
concerns. Completely opposite from my GP…</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;">First I spoke to the PA student & told her I was there
for a follow-up regarding my lungs, plus new issues. Like the fact that I still
feel tightness, labored breathing and general discomfort in my upper
chest/throat area. If someone leans against my arm next to me, I have a strong
need & urge to push them away as I feel everything getting tighter &
breathing being more difficult. Also my heart has been pounding hard, with or
without activity. My brain is in a dense fog, my speaking seems a little off
and I feel very foggy, in general. Driving requires extra effort, to stay
alert. My sleeping is off, my insides are out of whack, unusually so.</span></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;">All this prompted yet another lung function test. They’re dizzying!
But I wanted to be sure. Turns out, my lungs are perfect based on the test plus
listening to my breathing. But the doctor decided to be on the safe side and
did a EKG test, too. I’m sure everybody, myself included, thought there’d be
nothing newsworthy there. I’ve had 2 other EKG’s over the years in that same
office and they’ve both been uneventful. I waited in the room for a while, nobody told me what’s
going on, so I went and asked around. I was told the doctor was reading my EKG.
I didn’t think anything of it. Next thing I know, they’re telling serious stuff
to me.</span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;">My EKG showed changes. The report says “sinus tachycardia”
and “minimal voltage criteria for LVH”. The doctor showed me the changes on the
spikes in the report. He said, the report puts me in a “limbo” where this could
indicate a problem, or not. Somehow I’m borderline something. But based on
older reports, he thinks this something I need to get checked. He recommends I
go to the ER voluntarily as a preventative measure, and to know for sure. He
thinks I may have a blood clot, but said, if it is so, it’s not big. I suppose
this could indicate other issues as well… LVH means Left Ventricular
Hypertrophy and indicates the thickening of the myocardium (muscle) of the left
ventricle of the heart.<b> </b><span style="mso-bidi-font-weight: bold;">My pulse
was 101, resting! Blood pressure was highish (as it was at rheumatologist
appointment Wednesday). He said, I could wait it out and be watchful of my
symptoms, or get it checked before it becomes an urgent problem. </span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">Which is what I will
do… I’m going to the emergency room tomorrow & take the EKG results with me plus
a note from doctor… since it’s a possible problem with my heart, maybe I won’t
have to wait too long to be taken in. Dr. Chris took blood to check my kidney
function and D-Dimer test . D-Dimer test will help in confirming if we should
be concerned about Pulmonary Embolism (blood clot in lungs). Since I’m going to
the ER tomorrow, they will perform all the tests again, I’m sure. Either way… </span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">What makes this
worrisome for me is the fact that I will be flying to Finland on the 27<sup>th</sup>
of February. Planes and blood clots don’t really jive, or jive too well really…
I will feel much more confident with flying & my health if I rule out the
blood clot and maybe get answers to why I still feel this way, even though my
lungs are fine. I’m expecting loads of expensive tests tomorrow, but I should
also be much wiser after the day is over. At least I’ll know, if there’s
anything to know. The doctor told me to stop Symbicort, in case that’s the
reason why my heart is pounding… 2 days without and it’s still pounding… as if
parts of my body aren’t getting enough oxygen for some reason. He initially
told me to go down to 10mg Prednisone, but after hearing everything I said he
told me to stay on 20mg.</span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF19Mcgvd7lRRpJKNoXhPiTV_7MlCiHXkjSB839KcrnFI94KOJzyAc1TpLE-BrLTzAEXUaFg5Z_UthWwgGQISeHLrRKe_UTX98q0zzNtwuWwFB9roqV91L_bXoSDUv3t-itzvcmgevhUBB/s1600/IMG_5663.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a><span style="mso-bidi-font-weight: bold;"> </span></span></div>
<span style="font-family: inherit;">
</span><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW1nUv2rxeoL322_ki6Qh0H3ww2trIMI5uRtMTARf4SF8elN9MRI7Mv0KxNbGPa4w27eWgZLLi8CZddc4uUCVtmX8GhTeq92BTOqiDkQCpl15tBakyNk2NsGLtNshC4Fx_816ySGXrt2Sm/s1600/IMG_5657.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgW1nUv2rxeoL322_ki6Qh0H3ww2trIMI5uRtMTARf4SF8elN9MRI7Mv0KxNbGPa4w27eWgZLLi8CZddc4uUCVtmX8GhTeq92BTOqiDkQCpl15tBakyNk2NsGLtNshC4Fx_816ySGXrt2Sm/s320/IMG_5657.JPG" width="240" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Enbrel powder/solution 25mg kit</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;"> Some of you already
know, but I’ll write about my rheumatologist appointment as well. I saw him
last Wednesday, February 13. I’ve come to the conclusion that Enbrel alone is
not enough to control my RA and I can’t take Methotrexate because of my
previous medicine induced liver failure (2007). I believe I responded well to
Enbrel because I was on 10mg Prednisone at the same time (started Enbrel June
2012). As soon as I started tapering Prednisone in September, trouble started
brewing, slowly but consistently… Initially, first 6 months, I was on Enbrel
Sure-Click. My injection site reactions were getting out of control and the skin
on my thighs didn’t have enough time to heal to be ready for the next shot. I
tried Benadryl and topical steroid to stop the reactions, but no help. I
thought the ISR’s were caused by the preservatives in Enbrel, so the logical
next step was to try a preservative free form of Enbrel. It meant I would have
to give myself 2 injections a week & learn how to assemble the injection
& mix the solution… when I first saw it, I thought it was a IQ test ;) I
got my new Enbrel in the beginning of December ~ thankfully Little One’s dad
did the injections! I was very happy the injections didn’t hurt, unlike the
Sure-Click ones. The pain was mind numbing. It only lasted 15 seconds, but it
was horrific. Like I was getting stabbed in my leg. I assume it was the
preservatives… <span style="mso-spacerun: yes;">However, s</span>ometime in December (after maybe 4-6 shots of new Enbrel) I
started getting itchy in my stomach and chest (not sure if Enbrel related),
also my injection site reactions continued… they were a little milder, but
nevertheless, my body should’ve had gotten “over it”, if it was ever going to… </span></span></div>
<span style="font-family: inherit;">
</span><br />
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;">
</span><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><span style="font-family: inherit;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy0ZYQMp-2TXHCpudvpaAQfj7bjEsbmSM41kyY-Y6ElXCV0cnnhtx0BYO0AMCftcegdrxM50lAfUzMn4r_3ZtYU6q4NGbzkkbDbme9nAi2Mwms59f8zl5SO05FFMdPiWIQiUXh79ycCBkr/s1600/IMG_6034.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy0ZYQMp-2TXHCpudvpaAQfj7bjEsbmSM41kyY-Y6ElXCV0cnnhtx0BYO0AMCftcegdrxM50lAfUzMn4r_3ZtYU6q4NGbzkkbDbme9nAi2Mwms59f8zl5SO05FFMdPiWIQiUXh79ycCBkr/s320/IMG_6034.JPG" width="320" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: inherit;">Rheumatologist office, room 3</span></td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">Sometime in January
I started experiencing breathing problems, chest tightness, my cough got worse,
I wasn’t sure if I had a cold or not, so I stopped Enbrel. Plus I found out the
results of my December blood work… my inflammation markers, ESR (69) and CRP
(2.1) had gotten up, higher than when diagnosed. And before I began my high
dose Prednisone for the lung problems, blood tests showed ESR (82) and CRP (2.3).
Rheumatoid Factor was around 290. So that’s when I realized Enbrel wasn’t doing
enough, and we needed to take a new approach to my treatment. I did quite a bit
of research on my options, and a very long story short, I ended up suggesting
Rituxan as our next step. I asked my rheumatologist if he thought it would be a
good biologic for me, and why or why not? We talked about it, like a team and
decided I do meet the criteria for it (I have to fail one TNF in order to
qualify). He said he’d go through all my test results just to confirm it’s a
good direction to go to, but he did get the ball rolling on the approval. He
also wants me to get<span style="mso-spacerun: yes;"> </span>my eyes checked, as
he recommends me starting Plaquenil in addition to Rituxan. If I'm able to begin both, I hope they're a healing combo together :) </span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">One more thing about Rituxan... I am not currently in a situation where I could/should get pregnant, but I still dream about having a 2nd child. I'm going to be 37 in April and I don't know how much time I have left. The hesitation about starting Rituxan comes from the thought that what if... what if I should hold off and try Humira instead? With Humira I wouldn't have to wait a year before starting to conceive. With Rituxan I would have to. It's like I'm having to choose between another child and treatment for RA... it doesn't quite seem fair, because it isn't. But on the other hand, I'm incredibly grateful for my Little One. I'm lucky to have him :) I won't begin Rituxan infusions until after I return from Finland, so I have time to think. But it could also be too much time to think... but these drugs are no joke, as I've said before, so maybe a little more time is what I need...</span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">Finally, here's a list of all the medications I'm currently on: Prednisone 20mg, Dexilant 60mg, Singulair (just stopped Symbicort). In addition, I'm taking Vitamin C supplement, probiotic multivitamin, Magnesium & Vitamin D (2400). I'm not supplementing with Calcium as I get so nauseous from it. I may add a small Calcium dose, and see how it goes.</span></span></div>
<span style="font-family: inherit;">
</span><div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"></span><div class="MsoNormal">
<span style="font-family: inherit;"><span style="mso-bidi-font-weight: bold;">My post is so all
over the place, I’m sorry about that. I hope I managed to convey my thoughts in
an understandable way. Blogging takes a lot of effort, so I really appreciate you reading this and if you feel like you want to give me your 2 cents, please leave a comment.</span></span></div>
<div class="MsoNormal">
<span style="mso-bidi-font-weight: bold;"><br /></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Georgia,"Times New Roman",serif;"><span>Food for thought</span></span></span></div>
<div class="MsoNormal" style="text-align: center;">
<span style="font-size: large;"><span style="font-family: Georgia,"Times New Roman",serif;"><br />When you allow others to jump on your back, inevitably, you find yourself at the bottom of the pile. Who's riding you into the ground? ~ David Roppo</span></span></div>
Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-88749350070523939382013-02-12T19:46:00.002-05:002013-02-12T19:46:59.725-05:00Impressing the girlsMy little boy, 8, is obsessed. I bought him new shoes, some kind of Nike Air Jordan's, apparently cool. But he keeps asking me if they look good on him. He tucks his pants under the tongue of the shoe and asks "Is this Bieber style?" I'm consistent and always take his little boy questions seriously, I don't want him to feel like his thoughts and concerns aren't legitimate. Because to him they are and therefor, for me as well. So anyway.... he also keeps asking me "Are these shoes going to impress girls?" I said, probably. So will nice car & cool clothes. But I told him, the girl who is impressed with what you have and your shell, instead of your spirit, is not a keeper. The girl who falls in love with your spirit is a keeper. Hopefully some of these things will stick with him and he gets over his obsession "to impress girls"...Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-19129071920382492782013-02-11T20:05:00.000-05:002013-02-11T20:05:09.935-05:00She was a Grand Mother<span style="font-family: Georgia,"Times New Roman",serif;">This is one of those posts, where I don't know where to start and where this will end. I guess we could call it a "clear-your-printer-queue" post.</span><br />
<span style="font-family: Georgia,"Times New Roman",serif;"><br /></span>
<span style="font-family: Georgia,"Times New Roman",serif;">As I just posted, my 93 year old grandmother passed away this morning, in Finland. For 2 years, she had been in something in the US would be between a nursing home & a hospital. I saw her in August 2012 when Little One and I visited. She was just a shadow of her old self, that I had previously seen in December of 2009. She was living by herself, still very strong, physically and mentally. Sharp, funny and her inner child was still wild at play, even at 91. I remember her telling me how she was only on 1 medication at the time. She was justifiably proud. I don't even remember what that medication was for, but I believe it was something minor. Then sometime 2010 her health started declining and she fell down in her apartment, and couldn't get up. She waited for a day, or two, on the floor - until her daughter came to visit, after not being able to get in touch with her via phone. That was the day they both agreed it was time to look into other living arrangements. Soon after that she was placed into this nursing home/hospital. She had been independent for such a long time, that she never got used to it. She fought about everything and all she wanted to do was stay in her bed and not have to deal with "the people". She thought she didn't belong there, and in some way felt her intellect was above the norm there. Her physical health and mental ability declined quickly after... in the end, and for some time, she was ready. She slept away peacefully.</span><br />
<span style="font-family: Georgia,"Times New Roman",serif;"><br /></span>
<span style="font-family: Georgia,"Times New Roman",serif;">I have so much respect for my Gramma. She survived the World Wars and 2 husbands. Her 1st husband, my biological grandfather, passed away when my dad was 5. She became a widow and a single mother in the 1950's. She got married for the 2nd time and had 2 more children. The new step-father, however, dedicated his life to messing up my dad and preventing him from ever achieving his dreams. My dad, being the son of my grandmother, did it anyway, his own way. I know my grandma was so proud of him, even though I'm sure there were some unexpressed feelings of resentment from my dad. As in, why did my mother allow this to happen? This leads me to the thought, that I believe my grandmother was making up for what she allowed to happen to my dad and I can honestly say, she did make up for it, in the new generation. How lucky am I, to have been raised by such an amazing Gramma? Well my mother & father raised me, but my Gramma's goodness lives in me, majority of the good I am, I thank my grandmother for that.</span><br />
<br />
<span style="font-family: Georgia,"Times New Roman",serif;">The funeral has been set for March 2. They pushed it as far as they could, so the out-of-the-country family members could make arrangements. There are some questions about what really caused her death, so they may do an autopsy just to be certain. </span><br />
<span style="font-family: Georgia,"Times New Roman",serif;"><br /></span>
<span style="font-family: Georgia,"Times New Roman",serif;">I hope to be able to stay in Finland for at least a week. There are many unanswered questions regarding my family tree, and lots of information is now unavailable because my gramma passed away & I never got to ask the questions I needed answers for. I don't know why I didn't give this much thought before, but my biological grandfather had 3 sons from his previous marriage. Basically what that means is that I don't know my fathers side of the family at all. My father has half siblings somewhere. I want to dig into it and get more information about them. So I've got to make some arrangements and put on my research cap... I'm happy to see my family, as I've had a rough past few months. I'm at peace with my Gramma's passing, as I know she's at peace as well. ♥ </span><br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL-0tP1dRFGGSIeFviai9JcypOlUpOGib7VZuFu5XAghDGkfUOEnS7fuBih9Gu2Msife8BCDC9Hl7vHiSvsnPFHTYcR7vQTLaEgYuCUvBDjMkGmCFzNC2LLGDmk0isZlQUZaAlUv3v_FLp/s1600/P1000754.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiL-0tP1dRFGGSIeFviai9JcypOlUpOGib7VZuFu5XAghDGkfUOEnS7fuBih9Gu2Msife8BCDC9Hl7vHiSvsnPFHTYcR7vQTLaEgYuCUvBDjMkGmCFzNC2LLGDmk0isZlQUZaAlUv3v_FLp/s640/P1000754.JPG" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Little One, me & my Gramma, August 8 2012</td></tr>
</tbody></table>
<br />Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-8253495021932092592013-02-11T17:44:00.000-05:002013-02-11T17:44:47.497-05:00My Grandma, my best friend 1919-2013<h3>
<span style="font-family: Georgia,"Times New Roman",serif;">To my 93 year old grandma, who slept away today. </span></h3>
<span style="font-family: Georgia,"Times New Roman",serif;"><br />Thank you for teaching me how to knit, sew and crochet.<br />Thank you for teaching me how to play card games and shuffle the cards.<br />Thank you for teaching me how to cook and bake.<br />Thank you for teaching me how to take care of a garden.<br />Thank you for teaching me where milk and eggs come from.<br />Thank you for allowing me to eat raw potatoes and turnips.<br />Thank you for allowing me to explore freely on your farm & lands.<br />Thank you for going on adventures with me.<br />Thank you for making me strong, outhouse and newspaper -strong.<br />Thank you for teaching me how to be a lady, but a tough one.<br />Thank you for having a vegetable and fruit garden, without it I wouldn't know what real strawberries and peas taste like.<br />Thank you for being patient with me.<br />Thank you for being my best friend.<br />Thank you for trusting me.<br />Thank you for loving me.<br />Thank you for being kind to me.<br />Thank you for respecting me.<br />Thank you for letting me be a child, yet making me feel like a grown up that I wanted to be.<br />Thank you for the non-material gifts you gave me, your wisdom & most importantly - <br /><br />Thank you for the Time that you gave me. You live in me, through me, even though your physical body gave up today. I will continue teaching Little One everything you ever taught me. I've been truly blessed to have had a grandmother like you. I hope to be like you one day. Thank you for being my second mother, Mummo ♥</span><br />
<span style="font-family: Georgia,"Times New Roman",serif;"><br /></span>
<span style="font-family: Georgia,"Times New Roman",serif;">Forever in my heart, Sari</span><br />
<br />
<div style="text-align: center;">
<b><span style="color: #351c75;"><span style="font-family: georgia, bookman old style, palatino linotype, book antiqua, palatino, trebuchet ms, helvetica, garamond, sans-serif, arial, verdana, avante garde, century gothic, comic sans ms, times, times new roman, serif;">~ It's
one of nature's way that we often feel closer to distant generations
than to the generation immediately preceding us. ~ Igor Stravinsky</span></span></b></div>
<div style="text-align: center;">
<b><span style="color: #351c75;"><span style="font-family: georgia, bookman old style, palatino linotype, book antiqua, palatino, trebuchet ms, helvetica, garamond, sans-serif, arial, verdana, avante garde, century gothic, comic sans ms, times, times new roman, serif;"><br />
</span></span></b></div>
<div style="text-align: center;">
<b><span style="color: #351c75;"><br /></span></b><span style="font-family: georgia, bookman old style, palatino linotype, book antiqua, palatino, trebuchet ms, helvetica, garamond, sans-serif, arial, verdana, avante garde, century gothic, comic sans ms, times, times new roman, serif;"><b><span style="color: #351c75;">~ A grandmother is a little bit parent, a little bit teacher, and a little bit best friend. ~ Author Unknown</span></b><br />
</span></div>
Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-28402134517600102062013-01-21T14:30:00.000-05:002013-01-21T15:05:46.918-05:00Bipolar, psychotic & manic<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">Last week
was an eye opener. My body got assaulted & mind verbally (severely) abused. By a friend, of
all people. I won’t get into details, as this is not about how he hurt me. This
is about mental illness.</span></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">One of my
best friends is a psychiatrist, for clarity, lets name her “G.”. I told her
about everything that’s happened in the last week & really, last 2 months
or so. She was obviously worried for my physical safety, but also my mental
energy & how this person is draining me. My friends illness is draining my
energy & time, that I need to fight RA. He is also draining me of energy &
time that should be left for my son – he should get the best of me! Lately I’ve
been too exhausted to be the mother I am, because of my friends’ constant
demands for help. I’ve wanted to help my friend, because I’m all he has left.
Which on itself, to be honest, concerns me.</span></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;"> I’m not making excuses for my friend, but he’s
clearly ill. After I told G about everything he had said & done, she
diagnosed him as Bipolar 1, manic & psychotic. It hurts me so much, someone
I’ve known for 3 years & know to be a good person with a Big heart, is
under so much stress, he’s gone this deep :( </span></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">I’ve been
hurt<span style="font-size: small;"> & I can <span style="font-size: small;">no longer trust <span style="font-size: small;">him</span> - </span></span>but I can’t help it - <i>I miss the good times, I miss my </i><i>friend</i>. I know he’s
not well, but I’ve been told the best way to help him is to let him be &
cut all ties to him. To let him hit the rock bottom. I’ve protected him, and
really, I’ve done him disservice. I’ve hurt him, by protecting him. G said my
friend would eventually do something that will get him arrested & then
hopefully into treatment. G said, it would be obvious to health care professionals
that he needs to be “taken in”… I am the only constant/consistent kind person
that’s left of reality for him & me trying to help him is causing him to
escalate and further spiral out of control. Next thing you know, my own life is
in danger & when you have a child, putting your life in danger
(voluntarily) is just not an option!</span></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">I don’t
expect any friendship/relationship to be all good times. However, my friend has
gone so far beyond, that me being in his life is a deterrent for him to get
help (or be forced to get it). I’m contemplating on, if I should even send him
a letter, to tell him in writing, what I think. For him to know, I love him
& I want him to get better, but that we can’t be in contact until he gets help.
To let him know that I’m a deterrent to him getting the help he so desperately
needs. My friend, of course, is in denial about his mental illness – he thinks “it’s
everybody else”. I’ve brought it up a few times in the past 2 months & he
has accused me of having some kind of multiple personality disorder or me being
bipolar. I’m not passing any judgment on anyone mentally ill, but I’m sure G
would’ve said something by now, if any of this was true! (I’ve known G for 10 years!) I know if you’re
in that delusional, psychotic state of mind, you’re not thinking clearly,
hence, you won’t know there’s something wrong with your brain! (= not something
wrong with YOU, but your brain)</span></span></span></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">The reason
why I want to send the letter… He may not understand what I say or be able to
take it for what it really is, but if/when he gets better – he will have that
letter to go back to & know that I was trying to help him, not abandon him.
I usually talk to him every day & I’ve experienced LIFE with him, he has
taught me so much, I miss that person. I pray he survives and gets better. </span></span></span></span></div>
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><br /></span></div>
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;">
</span></span></span><br />
<div class="MsoNormal">
<span style="background-color: #fff2cc;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;">I will use
this time to improve my own life & especially my health. While I hope he gets better, I will try & do the same: I will drag my
behind to the gym pool 3 times a week. I wanted to do the same last year, but I
never did. One of my brothers is getting married in June, so I have a huge
incentive to get back in shape. Even if I don't lose any weight, I want to tone my muscles :) As of today, I’m down to 2.5mg’s on Prednisone <span style="font-size: small;">& </span>that my friends, is something to celebrate. Still continuing taking
Enbrel, 25mg, twice a week - preservative free injections. RA is 7<span style="font-size: small;">0</span>%
under control, not as well as I’d like, but much better than I was before
Enbrel :) I have number of side effects, but for now, I’m dealing. My friend,
G, signed me up for Best Year Of Your Life –class, so that will also keep me
busy.</span></span></span></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: inherit;"><span style="font-size: small;">
</span></span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIO-2Nzc5kz9GTfS7QWdW0CYm8QSkzMKOpaZ05tX8pl8F9DLpFk7J-1uSlaAsp2JD8dWzfqUcQr6mg6Z3WHHC4upWBwWpxF7fceqxjaPX4U8_YMsQsSe6cvYpS59qPvcTs_k3dA-xajHVg/s1600/IMG_8705.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIO-2Nzc5kz9GTfS7QWdW0CYm8QSkzMKOpaZ05tX8pl8F9DLpFk7J-1uSlaAsp2JD8dWzfqUcQr6mg6Z3WHHC4upWBwWpxF7fceqxjaPX4U8_YMsQsSe6cvYpS59qPvcTs_k3dA-xajHVg/s320/IMG_8705.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A dramatic sunset from "our rock"</td></tr>
</tbody></table>
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 115%;"><span style="background-color: #fff2cc;">But I do
miss my friend. Hope I’m able to stick to my guns<span style="color: #cc0000;"><span style="font-size: small;"> &</span></span> not be in any kind of
touch with him. Let it be the measure of my love, not being in contact until he
has gotten help.</span><span style="color: #cc0000;"> </span></span><span style="color: #cc0000;"><span lang="KO" style="line-height: 115%;">♥</span></span></span></span></div>
<div class="MsoNormal">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXHapwZcEO562D3Eg-gXWFyt-PEXBHBtxqfG4QwEx7JV7J4u58l7gpq12EaOOtkM2zhlKwXOVy-prUKwfai02TVAh5QEFNYfNeGNvLVwrplZCXtnMvwKKbh0BakHmKNSmNil3VMxXKmegC/s1600/IMG_8724.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXHapwZcEO562D3Eg-gXWFyt-PEXBHBtxqfG4QwEx7JV7J4u58l7gpq12EaOOtkM2zhlKwXOVy-prUKwfai02TVAh5QEFNYfNeGNvLVwrplZCXtnMvwKKbh0BakHmKNSmNil3VMxXKmegC/s320/IMG_8724.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our favorite flower</td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
<span style="font-family: inherit;"><span style="font-size: small;"><span lang="KO" style="line-height: 115%;"><br /></span></span></span></div>
<br />
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<br /></div>
Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com2tag:blogger.com,1999:blog-7008531276747263404.post-3464514338488499482012-11-07T22:42:00.000-05:002012-11-08T09:39:13.532-05:00Gastric denial<!--[if gte mso 9]><xml>
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<span style="font-family: Georgia,"Times New Roman",serif;">I’ve had a bad feeling about something being not-quite-right
in my stomach and to be honest, I was procrastinating making the appointment
for quite some time. It’s only now that things had gotten much worse, I couldn’t
really manage the acid coming up from my stomach anymore. Pepcid Complete/One a
day had worked wonders on me for a long time. The instructions say, do not take
more than 2 chewable tablets in 24 hours. I had been able to get by with just
one for a long time, but some time ago I had to increase my dose to 2 tablets
& much more often.</span></div>
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<br /></div>
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<span style="font-family: Georgia,"Times New Roman",serif;">My dad passed away back in 2006. In his autopsy, they found
out he had a massive ulcer in his stomach. The stomach cavity (?) was filled
with fluid, more than 10liters – how’s that even possible? Anyway, my dad had
been taking massive doses of Burana, Finnish ibuprofen. Nobody ever bothered
looking at the warnings in the package. My mom showed me the autopsy report and
it indicated that my dad had an ulcer in his stomach (among many other organ
problems).<span style="mso-spacerun: yes;"> </span>That ulcer had burned through
the wall of the stomach. I immediately asked her, if she knew about ibuprofen
potential dangers? And I also asked how many pills was he taking everyday? It
was a lot and mostly on empty stomach, apparently. I was horrified. The more he
took ibuprofen, the worse his pain got. He was a very stubborn man, and to some
degree a bit of a scaredy cat. He didn’t want to see a doctor for any of his
health problems, because he was afraid of what they will tell him. He was
convinced he is seriously ill with cancer of lungs or something, and refused to
see a doctor. You’re wondering why I’m sharing this information with you, I’m
sure. Well – I realized I was going down the same road as my dad, with denial
and fear of knowing what is wrong with me! So I made the appointment with my
gastroenterologist & it was yesterday.</span></div>
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<br /></div>
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<span style="font-family: Georgia,"Times New Roman",serif;">During the first appointment my doctor told me “Motrin is
what keeps me in business!” He understood that I have to take Motrin for my RA,
but he was shocked when I told him I take 3 Motrin’s (600mg of ibuprofen) in
the morning. Sometimes for headache, sometimes for other aches and pains,
sometimes I don’t take it anymore. I laughed, if you only knew how much I’ve
been taking for the past 2 years :D The 3 Motrin’s is nothing , I mean NOTHING,
in comparison! As many of you know, I also take Prednisone for rheumatoid arthritis (bad combination together with NSAIDs). So based on my symptoms, he suspected I may have an ulcer in my
stomach. So I scheduled an appointment for endoscopy and luckily they had 1
space in their schedule for today.</span></div>
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<br /></div>
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<span style="font-family: Georgia,"Times New Roman",serif;">I arrived at 11:50am, my appointment was at 12. They took me
in right away & we went through all the paper work, signatures &
questions. I couldn’t be sedated because I’m allergic to eggs, so the doctor
put some funky bubbly spray in the back of my throat, to numb it. The nurse
& anesthesiologist couldn’t find a vein in my arms. I have deep, slippery
veins plus I wasn’t allowed to drink anything in 12 pre procedure, so I was
dehydrated. Eventually the anesthesiologist found<span style="mso-spacerun: yes;"> </span>vein in the side of my wrist. Cried from
pain, 6 trials & deep prodding with a needle. He wasn’t the gentlest either
and got me pretty worked up and anxious. Not my idea of fun times, for sure. <span style="mso-spacerun: yes;"> </span>After he found my vein, he gave me valium. It
was supposed to help me stay relaxed & not feel weird about the camera
being put down my throat. After that I got a bit disoriented & might’ve
fallen asleep for some seconds, who knows, maybe minutes? I only remember that
I started to cough, gag and vomit. The doctor took the equipment out & said
he was done anyway, so it was ok. Then I don’t know, I was drifting on and off
between being awake and being asleep. After that, the doctor came to talk to
me.</span></div>
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<br /></div>
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<span style="font-family: Georgia,"Times New Roman",serif;">He said, I definitely have gastritis (acute and chronic gastritis), but no ulcers! Massive
relief! They took a biopsy of my stomach and he will check if there’s also
bacteria causing trouble. So while I wait for the final results, I’m taking
something called Dexilant. Must be something rather new since my doctor gave me
a discount card for it ;) He said it was so good I came to see him now, rather
than later. Most people apparently wait until the situation has gotten far
worse. So far I feel ok, no side effects, but I’ve only taken one capsule so
far. To be continued :)</span></div>
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<br /></div>
<div class="MsoNormal">
<br /></div>
<br />
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<br />Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-79954461680914871542012-10-20T12:09:00.001-04:002012-10-20T12:09:13.083-04:00Toxins everywhereI was going through old pictures & stumbled upon pictures from February 2010. I had a massive, serious, allergic reaction to something. At the time we were getting our house painted (inside) & I was breathing the fumes pretty much day in, day out. My face looked like I had been beaten up, the hives were so intense, my ears were swollen to the max, the skin was so tight it hurt. My nose doubled in size, so did my lips. My eyes were almost closed. The hives went down to my chest, in a vine like pattern. It lasted forever, but a round of steroids (which I was NEVER going to take ever due to my previous experiences) got rid of it. I didn't connect the dots between the reaction & the paint fumes until I visited friends who had just done some painting at their house - I got the same reaction after visiting them! (and another round of steroids!)<br />
<br />
So I just googled the topic, just to read a little more about it & what other people had experienced. It turns out, if the paint is latex based, my reaction indicates I'm allergic to latex?! Which then lead me into another concern - Enbrel sure-click injection. The needle cap in sure-click pen includes latex. Perhaps this would explain my injection site reactions? Recently they've become far more itchy & it lasts longer. For the first time today, I actually contemplated on switching to the regular Enbrel injections. Which is a big deal, since I'm not able to look at the needle puncturing my skin, when I'm getting blood work done. I could do without the injection site reactions & the intense itchiness. Maybe the latex is also the reason why my face is all rashy & bumpy? Maybe I COULD do the regular injections. Maybe?<br />
<br />
As I was researching the previous topics, I came across this website <a href="http://www.greenandhealthy.info/sickhousesyndrome.html" target="_blank">Green and Healthy - Sick House Syndrome</a>. The chart details diseases and conditions caused by exposure to "Building Toxicities". To my surprise (not) I discovered some autoimmune related toxins. For example, if you're sleeping on a chemical latex foam layered mattress - over time you can become ill by repeated and continuous
exposure to the low level of chemicals continuously emitted during the
sleep process. Common petroleum based chemicals (bedding, mattresses) have been clearly shown to have the ability to weaken or damage the immune and nervous system. What an eye opener this website is. Now I have to find out what my mattress is made of. I know it's a foam "something", but most likely it's not a healthy mattress, chemically speaking. Let me know what you think & I'd love to hear what are your own findings.Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com2tag:blogger.com,1999:blog-7008531276747263404.post-10967547659714540832012-10-18T13:04:00.001-04:002012-10-18T13:04:12.483-04:00Milestones<br />
It's been exactly 6 months since I wrote a blog post, yet so much has happened. I've shared little bits and pieces of my summer & fall in Twitter,
but really, it's been a crazy time & not everything can be explained
in 140 characters. Following is a summary of some of the <b>important milestones, events, thoughts </b>I've had since April.<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">True.</td></tr>
</tbody></table>
So I found a new rheumatologist, who made me feel all warm & fuzzy inside. That was April of 2012. I had to increase my <b>Prednisone</b> dose to 10mg/day (from 5mg) because I was going on a trip to Italy in May & I was scared my body would give up on me. Now I regret having done that, it's been really difficult trying to come back down from the 10mg dose. In 1 month I've gone from 10mg to 7.5mg. I wish I could go down faster, since my weight keeps going up & I'm definitely feeling it. Not to mention the number it's doing on my <b>self esteem</b>, looking at myself in the mirror & not knowing who the woman is staring back at me. It's not the best time to be feeling this way, as I'm supposed to transition to single woman life & confidence is highly needed.<br />
<br />
I also had a ultrasound of my fingers done back in May. It was an interesting experience & gave my doctor & I a clear understanding where we stand with rheumatoid arthritis. All finger joints were inflamed (duh, I knew that even without the sonogram) & loaded with synovial fluid. Deformations were so minimal, it's barely worth mentioning. It does not mean I'm not (or have been) in excruciating pain though. What it means is that the synovial fluid was hard at work trying to destroy the cartilage that keeps my joints functioning & eventually that would lead into deformities.<br />
<br />
I also saw a dermatologist for my odd skin problems & had a biopsy done. It gave me the answers, but no cure for this one either - the diagnosis is <b>Lichen Planus</b>. Some doctors believe it's an <b>autoimmune disease </b>as well & nobody really knows what causes it. Some speculate it could be brought on by extreme stress. I've also read it's not hereditary, but I beg to differ. After my diagnosis we also had a diagnosis for my dads skin condition. It was always a taboo, we were not allowed to talk about, nor did he ever get a biopsy on it. He was probably too scared to know what it was. He suffered from the skin disease since his teen years up until he passed away at age 56. Also, he never wore short sleeves nor shorts, because of his scars. What a way to (not) live.<br />
<br />
Thankfully I was able to begin<b> Enbrel injections</b> (50mg/week/sure click) in the beginning of June, I felt a significant improvement in joint pain & swelling in just 2 weeks & it's been mostly good since then. I do have wrist pain, ankle pain & my previously injured left knee continues to be badly swollen. But in comparison to where I've been, how bad things were, I was ready to give up on life... the quality of my life is amazing. I can only hope this lasts, but because I know it won't - <span style="font-size: large;">I'm appreciating every single day I'm able to run the stairs, tie my own shoes, open milk cartons, wash a frying pan & wipe my behind ( lol, yes, most people take this for granted!)</span>.<br />
<br />
<br />
We also finalized our <b>separation agreement.</b> July 16. It was a compromise for both. It was also a huge relief. However, following the signing of the separation agreement I had to get myself & little one ready for our trip to Finland. There was no time, nor was it practical, to move/find a place to live, before our trip. I was mentally preparing to move in September, after we got back from Finland. However, finding an apartment has proved to be incredibly difficult. According to our agreement, I should've moved out by October 1. That day has come and gone & we're still here. We are all <b>living in a limbo</b>, though, we're both trying to keep little ones life as normal as possible. Due to not knowing when we can move, ex & I haven't been able to tell our son about the separation. It's absolutely killing me, it's like everyday we don't tell, we're lying to him.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ-Q5ZY7PISuAnIiH-fHTsKHdwI-na27X6PbdtohK5k9YVSnX-_pCF5w6SLVfRQAG_RjidumB4XMydSWL_NJEqENU2OvdFLvqKq1c0cQX3mbYJaINoWNasnOnYwVRB_4plGCjfdIWP-fP6/s1600/IMG_4661.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJ-Q5ZY7PISuAnIiH-fHTsKHdwI-na27X6PbdtohK5k9YVSnX-_pCF5w6SLVfRQAG_RjidumB4XMydSWL_NJEqENU2OvdFLvqKq1c0cQX3mbYJaINoWNasnOnYwVRB_4plGCjfdIWP-fP6/s200/IMG_4661.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My little pumpkin with his pumpkin :)</td></tr>
</tbody></table>
He has made quite a few observations about things that aren't right or that are missing. Like the day we left for Finland, ex took us to the airport & we said our byebyes. After we settled down in the plane, my son asked me, how come you didn't kiss daddy? I'm not sure what my response was, as he took me by surprise. Daddy & I haven't kissed in front of him since our church wedding 2007. Daddy & I have barely hugged in front of him since (or elsewhere). Our son hasn't seen us be affectionate with one another & it's breaking my heart. We are very affectionate with our son, but as long as this (pathetic) charade continues, he won't get a chance to witness a normal partnership. For now he has a very sad <b>role model for marriage</b>.<br />
<br />
I recently realized I've buried some painful events so deep, for so long, that I almost forgot them. Something happened recently & it reminded me of the<b> insane mental anguish</b> I was in. It was so painful my mind had completely blocked it. Now it turns out, I never dealt with the loss & I need to face the music. I don't know how or where, but it won't let me be... just keeps bringing me down & making me sad. I recently confided in a friend about these things & it made it all far more real than I can deal with currently. But I suppose it's part of healing & grieving process.<br />
<br />
~ Thanks for reading my long update ~ <br />
<br />
Onwards & hopefully upwards. <br />
<br />
<br />Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com4tag:blogger.com,1999:blog-7008531276747263404.post-76340788360127862252012-04-18T11:57:00.000-04:002012-04-18T11:57:41.258-04:00Dr. New Rheumatologist<!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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<div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">I’m not in the mood to write at all – the weather is so amazing! But many of you have been on the emotional roller coaster with me trying to find a new rheumatologist & supported me with my anxieties, so you deserve this!</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">When I first contacted this rheumatology office, my intention was to schedule an appointment with a lady rheumatologist. There’s 6 or 7 different rheumatologists in that office. The receptionist told me the next available appointment for a new patient is in the end of May, and it was February when I called! I thought that was far too long to wait, considering how long I had waited already plus how much pain I was in. So I asked if any other rheumatologist in their office could see me earlier. I was desperate, but hesitant, since who wants the doctor that is “not as popular”?! So I got my April 16<sup>th</sup> appointment & that was yesterday.</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">I made the mistake of procrastinating getting all my documents/records together and then scrambling to get it done on the day of the appointment. I would’ve saved myself a lot of worry and anxiety, if I had done it before! I got myself so worked up, I couldn’t speak or think properly. I was also very anxious about the new doctor – is he going to live up to my expectations and hopes? Will he be cold & distant? I was tired and weary, looking for a rheumatologist. I made a list of “must have’s” in my previous post, based on my experience with Dr. Pearls. To save you time, I’m posting it again, with additions of + symbol if it fits to my new doctor.</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><ul><li><span style="font-size: small;"><span style="line-height: 115%;">Knows what they're doing +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Has waiting time less than 30 mins</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Speaks fluent English +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Is a woman</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Listens to me +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Believes me +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Won't tell me "I've been doing this for 30 years" +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Has been a rheumatologist for 10-15 years max </span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Understands my complicated medical history +</span></span></li>
<li><span style="font-size: small;"><span style="line-height: 115%;">Takes me seriously! + </span></span></li>
</ul><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">7 out of 10 isn’t bad! And quite honestly, knowing what I know now – I don’t mind waiting for the doctor, if I know he will do a thorough exam when it’s my turn! The fact that he’s a man and he’s been a rheumatologist for over 20 years, I just can’t hold them against him ;) <b>The bottom line is</b>, he listened, asked questions, was thorough, didn’t assume anything, smiled, very down to earth, easily approachable, didn’t feel like he was in any hurry to finish, he spent more than an hour with me! He lingered, talked some more while the nurse took blood. We talked about different treatment options & I impressed him with my knowledge ;) He had his colleague look at my legs, that are covered in “something” (can’t really tell you what it is, since I don’t know). I was in rheumatologist heaven! If I had never had a bad experience with Dr. Pearls, I might not have known to appreciate him.</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">I told him my ex-rheum diagnosed me with RA, but the new doctor is running tests to exclude other possible diagnosis. I’m getting a skin biopsy done for my legs tomorrow. He wants to be sure it’s not Vasculitis. I’m also going to get new x-rays, to compare to the ones from year ago. He did confirm I have a large rheumatoid nodule forming in my elbow, probably both.</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">Now about treatment options - since I had a drug induced liver failure back in 2007, we need to be extra cautious with how to treat my RA. While all my tests are pending, I was given a cortisone injection. Something called <b>Depo Medrol</b>. It was not injected directly to the joint(s), but to a muscle at my hip. Apparently it’s going to help with inflammation & reduce pain, just like the pill form of steroid I’m taking. The shot itself stung big time, but I didn’t feel any different otherwise. This morning however… I was in more pain than I have been in a long while & my joints were super stiff! I couldn’t pull the orange juice out of the fridge, I couldn’t push the button to put laundry detergent into the cup! Everything was “can you help me?”, “I can’t do this”, very frustrating, having been a bit better since starting Prednisone. So I hope this is just a temporary setback & the pain will subside once the cortisone really kicks in! I have heard it could take 24-48 hours for the steroid to start doing its magic, and that things will get worse at first… oh yay ;) If I know the relief is coming, I don’t have any trouble waiting!</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">We both agree on trying a biologic treatment. He mentioned Enbrel (which is where my mind was at as it is) & Orencia. We even talked about Methotrexate, but given my history, it’s the final treatment I will ever try. I cringed when he mentioned Orencia, I remembered my Twitter friends’ poor response to it. He did say, there’s 2 kinds of Orencia (I didn’t know) & I will look into it. But after we have a confirmed diagnosis, we’ll begin with Enbrel and cross our fingers :) Thanks to Barb's video on how to inject the Enbrel shot, I'm not too afraid of it!</span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
</div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;"><b>I feel a sense of empowerment</b> with how informed I’ve become through the RA Twitter community. I feel blessed & lucky to have made RA friends all over the world & to have found a new rheumatologist. Both have given me perspective, I’ve learned a lot. I learned you don’t have to be a woman to be a heaven sent rheumatologist! <b>I need to name my new doctor, any ideas? :)</b></span></span></div><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><br />
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<tr><td style="text-align: center;"><span style="font-size: small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFpJRqnikgtqJssr9zwXLYvpUbsM-1Ps3nb_Nb-OodJqVp3A7P1DsgD9kK6xIzr-IPuybibSXARAkKlDoPWG37PKbj2f-tnj0Jz2wb9eld5C59MP3UWmCkfIgKlx8SLgyqZQdHNsJ1XXP8/s1600/P3190022.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFpJRqnikgtqJssr9zwXLYvpUbsM-1Ps3nb_Nb-OodJqVp3A7P1DsgD9kK6xIzr-IPuybibSXARAkKlDoPWG37PKbj2f-tnj0Jz2wb9eld5C59MP3UWmCkfIgKlx8SLgyqZQdHNsJ1XXP8/s320/P3190022.JPG" width="228" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">My lil' cutie March 2012 :)</span></td></tr>
</tbody></table><div class="MsoNormal" style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: small;"><span style="line-height: 115%;">P.s. I have to get my lil one to the dermatologist to get a biopsy asap. He’s been complaining of back pain for a while now, plus his knees/legs hurt occasionally. They may hurt more than that, but he’s not a complainer, since he hates going to the doctor. He has chronic eczema, but he also has other rashes, that seem to be relentless. The pains could also be just growing pains, but I need to get him checked. To be continued…</span></span></div>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com5tag:blogger.com,1999:blog-7008531276747263404.post-3217064604362548772012-04-02T17:52:00.000-04:002012-04-02T17:52:14.918-04:00Uncertainty<div style="font-family: Verdana,sans-serif;"><!--[if gte mso 9]><xml> <w:WordDocument> <w:View>Normal</w:View> <w:Zoom>0</w:Zoom> <w:TrackMoves/> <w:TrackFormatting/> <w:PunctuationKerning/> <w:ValidateAgainstSchemas/> <w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid> <w:IgnoreMixedContent>false</w:IgnoreMixedContent> <w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText> <w:DoNotPromoteQF/> <w:LidThemeOther>EN-US</w:LidThemeOther> <w:LidThemeAsian>X-NONE</w:LidThemeAsian> <w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript> <w:Compatibility> <w:BreakWrappedTables/> <w:SnapToGridInCell/> <w:WrapTextWithPunct/> <w:UseAsianBreakRules/> <w:DontGrowAutofit/> <w:SplitPgBreakAndParaMark/> <w:DontVertAlignCellWithSp/> <w:DontBreakConstrainedForcedTables/> <w:DontVertAlignInTxbx/> <w:Word11KerningPairs/> <w:CachedColBalance/> </w:Compatibility> <w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel> <m:mathPr> <m:mathFont m:val="Cambria Math"/> <m:brkBin m:val="before"/> <m:brkBinSub m:val="--"/> <m:smallFrac m:val="off"/> <m:dispDef/> <m:lMargin m:val="0"/> <m:rMargin m:val="0"/> <m:defJc m:val="centerGroup"/> <m:wrapIndent m:val="1440"/> <m:intLim m:val="subSup"/> <m:naryLim m:val="undOvr"/> </m:mathPr></w:WordDocument> </xml><![endif]--><!--[if gte mso 9]><xml> <w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
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</style> <![endif]--> </div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: small;">If someone loves you with everything they have, no matter how flawed you are. No matter how damaged, no matter how depressing your presence, no matter how much baggage you carry around, no matter how you haven’t been able to hold your end of the bargain… loves you so unconditionally… no matter how poorly you treat them, because of your own pain… emotional and physical… no matter how you think you two aren’t a good match, that he doesn’t have enough passion for life, not able to have intelligent conversation, doesn’t challenge you.. not to mention, you two don’t have chemistry, your husband has no backbone, can’t stand up for you, lets other people verbally assault you, your parenting styles are very different, you can’t stand the idea of him touching you… but if someone would do anything, absolutely anything for you… are you selfish for wanting something more, to find your voice, to finally blossom into your own, that you’ve been afraid to do all your life?</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Week ago or so, I had a dream about fog, driving into very thick dense fog. Here’s the dream interpretation:</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif; margin: 5pt 6pt;"><span style="font-size: small;"><b><span>Fog</span></b></span></div><div style="font-family: Verdana,sans-serif; margin: 5pt 6pt;"><span style="font-size: small;">To dream that you are going through a thick fog symbolizes confusion, troubles, scandal, uncertainty and worries. You may not be seeing things the way they really are. You may have lost your sense of direction in life. Alternatively, a fog represents mystery, secrecy and protection.</span></div><div style="font-family: Verdana,sans-serif; margin: 5pt 6pt;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: small;">There was another dream this morning (and there have been others in the recent weeks, just forgotten them)… my lil one was wearing a backpack, he wandered away, I saw him walking in the city, crossing a busy street, I’m yelling his name & next thing I know, I can’t find him… I lost him in the city… the lil 7 year old boy alone in the big city… at some point I was running down a hill looking for him, slipped,<span> </span>rolled down… woke up…</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: small;">Some of you know, I’m in the final inches of my separation agreement becoming a reality. We’ve been forced to live together throughout the process. It’s been very draining, painful & … well I don’t even have words strong enough to describe how it’s been. Some, in fact, many things have happened, that have made me question if I should go forward with this. It kills me, to have been going through separation for 2 years, and have doubts at the final stages. When I was first diagnosed with RA back in March of 2011, I thought to myself… I won’t be able to work, my dreams of having a business of some kind, died… along with dreams of working hard & making something of myself… I felt like some forces had punched me in the gut, kicked me in the head, mugged me, robbed me of life I once dreamed of… how do I go on now, on my own? Going from completely safe & secure, to self supporting unknown. I’ve been overwhelmed with anxiety, panic attacks and out of this world stress.<span> </span>Having people around me who doubt my ability to make it on my own, hurts. It also keeps feeling like a kick in the ribs. I don’t know if I’m able to make it in NY on my own. I’m a country girl from Finland, who never really found her thing. Who never really figured out, what her purpose in this world is.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: small;">My fear is, I will end up damaging my lil one, because I’m selfish. That he will be collateral damage to my need to find me & be the best that I can be. <span> </span>This post is a little all over the place, I had to just write my thoughts down… to ease the pain. Thanks for reading my ramblings.</span></div>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0tag:blogger.com,1999:blog-7008531276747263404.post-37024132077726243402012-02-14T23:05:00.002-05:002012-12-11T22:00:49.918-05:00Quest for LifeJust thought ya'll would like to know - my period arrived last week, Feb. 9th! Not going to get in too much detail, but I was happy to have the pain, cramps & "stuff" that I've been getting since I was 11! Back to normal here, I hope :)<br />
<br />
In other news, my friends finally convinced me it was time to give my body a break and surrender to Prednisone. I started a round of Pred last Friday, Feb. 10. - dose of 5mg/day, for 30 days. That's the time I have left to find myself a new rheumatologist! My GP told me "this is no way to treat RA! - you have to promise to make it a priority to find a rheumatologist!" (to clarify, it was my GP I crawled to, to ask for a round of Prednisone...) So far so good with Prednisone... hope I get an appointment with a rheumatologist soon. I've had some setbacks, thought I found a good one twice, but one doesn't accept more patients and the other works in the hospital that sent me home, when my liver was failing! (not going back there again...)<br />
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I did go see my GP for another reason as well though! I get regular check-ups for my blood, more specifically my liver. I'm taking Chinese Herbs, and want to be sure they're not doing damage to my liver. The results were amazing! All my blood work came back better than maybe ever before! My cholesterol was Perfect (162), liver purring like a kitty cat ;-) A nurse told me, I should frame my test results, they're so good! I'm happy the overhaul of my diet and the Chinese Herbs are helping me. I was all smiles after :)<br />
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My OB/GYN appointment was rescheduled to Feb. 28 - going to ask for a recommendation for a endocrine gynecologist. I see lots of medications in my future, but such is my path. When I do surrender to medications, I know I've tried everything else. Still keeping common sense as my companion though! :) <br />
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This is how I looked a few days after my official diagnosis, on my 35th birthday ~ I had a glass or two of wine that night :) (removed the picture) Sure helped me mellow out, after a stressful week! The anniversary of my diagnosis is coming soon & so is my birthday! Maybe I'll be in square 1 around the same time this year again... I hope to have started treatment, at least. I have heard lots of good about Enbrel... contemplating if I could ever give myself a shot. At this time, I don't think I can/could. But - first things first, I must find a rheumatologist who:<br />
<br />
1. Knows what they're doing<br />
2. Has waiting time less than 30mins<br />
3. Speaks fluent English<br />
4. Is a woman<br />
5. Listens to me<br />
6. Believes me<br />
7. Won't tell me "I've been doing this for 30 years"<br />
8. Has been a rheumatologist for 10-15 years max.<br />
9. Understands my complicated medical history<br />
10. Takes me seriously !<br />
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<span style="font-size: small;"><b>A leader, once convinced that a particular course of action is the right one, must....be undaunted when the going gets tough." </b><b> Ronald Reagan</b></span></blockquote>
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Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com1tag:blogger.com,1999:blog-7008531276747263404.post-44365981195433337072012-02-05T16:39:00.000-05:002012-02-05T16:39:35.940-05:00Link between hormone imbalance and RA<div style="text-align: left;"></div><div style="text-align: left;">I was diagnosed with RA a year ago. I haven't had a rheumatologist, nor have I been on any RA medications since May 2011. It's been a constant flare up since October 2010, only increasing in intensity. I wanted to treat ( If I'm perfectly honest, perhaps cure ) my RA with Chinese Herbs, and I had a great summer of 2011 because of them. Long story short, my body is sensitive & it is no different with how it responded to the long term use of Chinese Herbs. And by long term I mean 3 months. Yes, the herbs were helping me, but they left my menstrual cycle a mess. As I've said in a previous blog post, I was desperate for relief, so I started a modified herbal regimen in the end of November -11. It was definitely easier than finding a rheumatologist, who I trusted. But the consequence of that was, my menstrual cycle continued to be a mess. First 3 months also gave me high blood pressure & high ALT/AST liver function values. The high blood pressure alone was enough to make me stop in my tracks! The 2nd round of herbs seemed to have sealed the deal on my menstrual cycle just raising its hands up "I give up!" I've had 3 "periods" in the last 6 months. 1 relatively normal back in August, then 2 barely there, spotting for a week. Average cycle length has been 60 days or so. As all women, I too don't mind not having periods, but the consequences of that may be dangerous. The 2nd round of herbs also seems to have dried me up. One of the herbs, Arthral EZ, seems to have dehydrated me. I feel it everywhere. My dry mouth might be a side effect of this herb (and not Sjogren's syndrome, like I started to think). All in all, if I compare the herbs to western drugs, the side effects are very minimal with the herbs.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">The herbalist knew the most helpful herbal combo (called AI#3) has a side effect of eventually affecting the menstrual cycle. Women are supposed to take it up to 3 months, then take 1 month break (supposedly for the period to return). My body responded negatively faster than the average woman. The fact that the herb mix I was on, affected my periods, leads me to some conclusions. I think the herbal mix changed my hormone levels & it is still doing it. When I stopped the herbs back in August, I think RA came back with vengeance because my hormones were even more messed up vs. what they were before the herbs. I'm supposed to meet with my herbalist this Thursday, to get my next months supply. The herbs help me, so I'm hesitant to stop. But I feel for $300/month I should be able to have a regular menstrual cycle, slow the disease progress & have more pain relief! Do the herbs really do anything besides act mostly as an analgesic? In addition to the herbs, I still take minimum 1200mg of ibuprofen a day, and I've been doing this for more than a year! And I still sleep & live with pain, disability & fast progress of disease, regardless.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBF-syMOPZRtwEhWHU1UgEr9blFwTVUYt-Qxc8vYNfX3N-RGp7QLkheJ7ywLH-XPYZ3e_NLpzSCc0IERNiK3QXz1qnX_8YUxLQsLzpiPWDM3iqgFcwNoq-_6FdWxsUAOFJGb2pVOVinOs5/s1600/hormonal-symptoms1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div><div style="text-align: left;">I also have PCOS, polycystic ovary syndrome, diagnosed a few years ago, currently untreated as well. My body responds poorly to birth control pills, so I have to find another way to manage that. My ob/gyn doesn't specialize in PCOS, so I would also have to find a new ob/gyn to address this issue. My periods have always been very painful with a heavy flow, bloating, aches, migraines, mood swings & I seem to have been irritable/annoyed all the time. Seems it has been a full blown PMDD. Before my herb induced (I think) menstrual problems, I spent half the month suffering from the effects of my menstrual madness! Now I've been just all over the place, since... </div><div style="text-align: left;"><br />
</div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyb1aZNaSTuVPhuZiS5HOPiPl2pnm3-otFks8C0AlmvKuNWV9XdTa29TaJPQHZDtdbZc2mSpsjuFkMCs5PTZcjYHsewi-0bDYro-5HUr8e1YxDZeoPOxzfspt6Xmm3DU28tLm-PAKLe8mU/s1600/woman_balance.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyb1aZNaSTuVPhuZiS5HOPiPl2pnm3-otFks8C0AlmvKuNWV9XdTa29TaJPQHZDtdbZc2mSpsjuFkMCs5PTZcjYHsewi-0bDYro-5HUr8e1YxDZeoPOxzfspt6Xmm3DU28tLm-PAKLe8mU/s320/woman_balance.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The key to life is balance.</td></tr>
</tbody></table><div style="text-align: left;">So all in all to summarize my thoughts:</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Could it be, hormonal disturbances/imbalance causes RA flare-ups? Could that be the reason RA affects more women than men? Could treating hormone imbalances help minimize RA flare-ups? There is also the question about, what hormones help and what hormones hurt RA. What my independent research shows is that, it's all about the balance of different hormones when it comes to RA. I quote conqueringarthritis.com : " Turns out that estrogen, at normal (non-pregnant) levels, enhance the type of immune responses that cause RA. Androgen suppresses these responses. If you have normal levels of estrogen but don't have enough androgen, it is much harder for the body to stop the out of control immune responses that cause RA."</div><div style="text-align: left;"><br />
</div><div style="text-align: left;">Following is a list of some interesting websites I came across in my research in reference to this topic.</div><div style="text-align: left;"><br />
</div><div style="text-align: left;"><a href="http://www.womentowomen.com/inflammation/jointpainorarthritis.aspx" target="_blank">Women to Women/Quieting Inflammation</a></div><div style="text-align: left;"><a href="http://www.shoulder1.com/news/mainstory.cfm/65" target="_blank"> Hormonal Imbalance and RA Link Studied</a></div><div style="text-align: left;"><a href="http://www.conqueringarthritis.com/articles/hormone_rheumatoid.htm" target="_blank">Hormone therapy for RA</a></div><div style="text-align: left;"><br />
</div><div style="text-align: left;">I think this is fascinating! Meeting with my OB/GYN this Wednesday, as it is time for my check up & I do have some other issues I need to address. I have a feeling "something is up" down there. But I intend to bring this topic up as well. I will definitely continue my weight loss journey, if for no other reason, but to help my hormone levels & overall health. Belly fat seems to be a culprit in creating too much estrogen as well. To be continued...</div>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com4tag:blogger.com,1999:blog-7008531276747263404.post-1555230188955282082012-01-30T20:38:00.000-05:002012-01-30T20:38:21.923-05:00Forbidden HappinessI had a day out of this world today! Things were going my way all day!<br />
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I woke up with my usual aches and pains. The first few minutes were actually really rough, I remember thinking my arms were unusually weak & the bottoms of my feet were the normal, "walking" "few inches at a time". Then suddenly, I felt full of energy, not as stiff, less pain & generally just very light, full of life, hope & excitement about the day. I was moving a little faster, and actually managed to make lil' one his sandwich for school. And open the fridge door without much effort! I felt strange about this sudden change!<br />
<br />
I went along with my morning, took lil' one to school, came back, walked the stairs & thought to myself, hmmm!, what's going on today! I walked the stairs, and it didn't feel as bad as it usually does. I made breakfast, watched the Kardashians season finale (my very first season I've ever actually watched, my favorite by far is Scott, I like his quirky sense of humor :)) and I still felt the good vibes and unusual energetic feeling. So I turned off the tv, called my OB/GYN to make an appointment for a check-up. It usually takes 3-4 weeks to get an appointment with him! This time I got an appointment for Feb. 8! (I felt lucky & this inspired me further!). Then I drove to my GP's office to request copies of my allergy test results & to make an appointment to get my blood work done. Got that for tomorrow & I'll be getting my allergist records soon as well!<br />
<br />
Then I went to the grocery store, or supermarket, as some like to call it. I use an anti acid medication occasionally for my heartburn, but I only have 2 chewable tablets left. I've been anxious about not having been able to find more of it. Next thing I know, my grocery store has 3 of them! They are ridiculously expensive ($24.99/each!), but I bought 2, I just couldn't pass the opportunity. I thought 3 would've been a bit too much :P My favorite yogurt, Fage 0% was also on sale, 10/$10!! Normally they are $1.99 each! :O I also got a self check-out register, that didn't talk! It's one of my biggest pet peeves, those machines. Annoys the heck out of me, listening to her telling me what to do! I was on cloud 9, so happy!<br />
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Next I decided, this happy high girl needs a manicure, so I popped into my nail salon. Generally I just talk to the owners daughter, and maybe exchange a few words with some strangers. Today however, I started a conversation with a lady, who was wearing a winter hat indoors, she felt so cold. I could relate to it and made a positive comment about it. Then we started talking, and one thing led to another... I told her I have RA, and she told me she has Sjögren’s syndrome! As you may know, I'm currently looking for a new rheumatologist and it's been a big struggle. I'm very anxious about starting RA treatment via biologics or DMRAD's. So after a little bit of talking, I asked the name of her rheumatologist & she shared. She spoke highly of him and told me people from all over the country come see him. My plan was to Google him and then possibly make an appointment, too. The nail salon wasn't busy, so I stayed even though my nails were dry. We had such a great talk and it felt good to socialize for a change. I was also thinking, could it be, I was supposed to get a manicure today, so I will find the rheumatologist I'm supposed to find?<br />
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After I got my nails pretty, I came home. I was still happy and mellow, but I felt my energy level declining a bit. Throughout the day I felt the need to tell the whole world how great I felt! But as the day went on, I continued feeling guilty for feeling this good. Just goes to tell you, how bad things have been, for a day like this to feel abnormal & forbidden. Don't get me wrong, I had pains and stiffness, but it was nothing compared to what it has been for the past months. I knew this was a rare day, so I enjoyed it! I know the heavy pain and stiffness will come, but today was an incredible day for me and I'm so appreciative of it. <br />
<br />
P.S. According to the Daily Mail post (thank you Barb), today was The Happiest Monday of the year! I can wholeheartedly agree with that! <br />
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P.S.S. After I found the rheumatologist, I learned he doesn't take my insurance! But I keep searching!<br />
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<span style="color: #741b47; font-size: large;">" </span><span class="maintext"><span style="color: #741b47; font-size: large;"><span class="firstword">Life's</span> so ironic. It takes sadness to know what happiness is, noise to appreciate silence & absence to value presence. "</span></span>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com1tag:blogger.com,1999:blog-7008531276747263404.post-71531398039824669022012-01-24T10:34:00.008-05:002012-01-24T12:25:48.017-05:00Does the elimination diet work for RA?<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiowXTkxwDbcnc_TuskW2zj8STF3493swiNkeq7NPWFRAnkQA2RhyphenhyphenL0rfOwFnLYF7cgte0yWnD9dLhDHg35btfNKTTPTJmJduWWDkPl5ENZk_8lXxU_iyEOdtv6QzB12xnRFgbtJDBIiwxd/s1600/chocolate.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 320px; height: 252px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiowXTkxwDbcnc_TuskW2zj8STF3493swiNkeq7NPWFRAnkQA2RhyphenhyphenL0rfOwFnLYF7cgte0yWnD9dLhDHg35btfNKTTPTJmJduWWDkPl5ENZk_8lXxU_iyEOdtv6QzB12xnRFgbtJDBIiwxd/s320/chocolate.jpg" alt="" id="BLOGGER_PHOTO_ID_5701247276531096210" border="0" /></a><span style="font-size:85%;">It's been one week since I started my experimentation with the nightshade diet plus minimizing the intake of acidic foods. I wanted to find out if it would make a difference in the level of inflammation and pain, with my RAD.<br /><br />I eliminated all food with potato, tomato and paprika in it. I also stopped eating sugar (and anything that had lots of sugar in it), chocolate & red meat. I didn't drink any alcohol (I don't drink it much as it is, but for documentation purposes), milk or coffee (not even decaf). I didn't eat anything artificial either. To be honest, it would be easier to tell you what I ate, instead of what I eliminated ;-) I continued taking my Chinese herbs, which caused me to question the validity of my experimentation. They are herbs after all, and I'm not sure if some of them belong to the nightshade family of plants. But 1 week of experimentation is finished, and I gave it my best, considering circumstances.</span><br /><br /><span style="font-weight: bold;font-size:100%;" >How my body reacted</span><br /><span style="font-size:85%;"><br />The first 2-3 days were rough. My willpower was strong and I knew I could get through it, but my body was responding like a body of an addict. By no means was I what anyone would consider an addict to any of the foods/drinks I eliminated. However, I did have a head ache until just a few days ago & the first days I was pretty sour with my mood. I also had some severe brain fog. Snappy & irritable. Tired with low energy. Scouring the kitchen for something to eat. Seeing all the foods I couldn't eat. I told my friend about my struggles and he said something thought provoking: <span style="font-weight: bold;">"If your body is responding this strongly to the withdrawal of these foods, maybe there's your clue, you shouldn't eat them..</span>." And then I turned a corner, my body started adjusting. I still desire coffee & chocolate, and all my other faves, but at least I don't have the physical withdrawal symptoms!<br /><br />Long story short, I can't say I feel significantly any less pain/inflammation. If anything, I feel more stiff! Has this been a wonderful beginning to a healthier life? YES, YES, YES!<br /><br /></span><span style="font-size:85%;">On a side note, </span><span style="font-size:85%;">if I had stayed on this elimination diet for a month, would the results have been different? </span><span style="font-size:85%;"> I am allergic & sensitive to lots of foods, so excluding so many that I can eat, may not be something that's ultimately healthy for me. On top of that, I have some sensory issues with textures (complicated much? ;)) So my diet was very limited before my experimentation, and while on it, it was amazing I found anything to eat :D</span><br /><span style="font-size:85%;"><br />Onwards & upwards, friends!</span>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com2tag:blogger.com,1999:blog-7008531276747263404.post-1686112956193956352012-01-18T19:22:00.005-05:002012-01-18T19:32:32.710-05:00Levaquin<span style="font-family: georgia;font-size:85%;" >I meet with my therapist every Wednesday, as I have for the past 2.5 years. We first met when my husband and I went to see him for marriage counseling. My husband came with me 3 times, and then concluded, he doesn't really have a problem with our marriage, that's it's all me. (we disagree on that one, but we disagree on more than we agree as it is, so no biggie). I continued seeing the therapist & he's really become a friend, my lifeline.<br /><br />Today we talked about the role Levaquin might've played in me getting RA. We've talked about it numerous times, but today I had something to show him. There's a website called <a href="http://www.askapatient.com">Askapatient</a> where you can look up any medication and either add your own comments about it, or read about other peoples experiences. I printed the first 19 pages of comments on Levaquin and gave them to him, so he knows a little bit of what I know. From my research, it would appear I am a carrier of the RA gene, which made me sort of a loaded gun, just ready to go off, when the "right" triggerer arrived. And I'm convinced, Levaquin was the one that pulled the trigger.<br /><br />I don't know if there will ever be any justice regarding this, for me and thousands (if not more) of others who have gotten lifelong disabilities, even death, due to Levaquin. I know Levaquin has a Black Box Warning Label in it now, since 2008. It should serve as a warning to doctors, to not prescribe it lightly. In my opinion, it should be taken off the market and a class action lawsuit should be filed. Just because they put a Black Box Warning Label on the drug, doesn't mean people will not take it. If they're given antibiotics, chances are they're not 100% well and maybe not even thinking straight. Medications always have warnings, but how many of them really do as much damage to as many people as Levaquin? I don't know any statistics on this one, but someone needs to put an end to this. I'm currently contemplating on what action to take on this topic. I'm obviously battling RA and struggling with treatment, as most are, so it's occupying most of my brain power and time. I'm also going through separation. It seems impossible to tackle this possible Levaquin -lawsuit. But I will keep researching and finding potential allies along the way.</span>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com4tag:blogger.com,1999:blog-7008531276747263404.post-43683348830516848022012-01-17T18:49:00.003-05:002012-01-17T19:41:08.269-05:00The F*** Arthritis Girl<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim4JIwdZHEsqDHuqDjm9SBrrmqr9pKALcS7sCKBJOByNLIKvXh7FjuPAGPaeRA2sCWaKfbc1skNo7pu9J3hKcUZ2F6VijS7QV3FtnWOjD7mkMJtm-bVzVqJJqXOeeztRqUAKsmNXMudXuV/s1600/notomato.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 320px; height: 289px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim4JIwdZHEsqDHuqDjm9SBrrmqr9pKALcS7sCKBJOByNLIKvXh7FjuPAGPaeRA2sCWaKfbc1skNo7pu9J3hKcUZ2F6VijS7QV3FtnWOjD7mkMJtm-bVzVqJJqXOeeztRqUAKsmNXMudXuV/s320/notomato.jpg" alt="" id="BLOGGER_PHOTO_ID_5698764743995842578" border="0" /></a><br /><span style="font-size:85%;"><span style="font-family: georgia;">Today was a perfect example of how a negative event can turn into a positive one.</span><br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">A person whose Twitter name is reflected in the title of my post - got under my skin with her post today, to a dear Twitter friend, a respected blogger/RA activist. It was almost as if the F girl was trying to stir up something. Taking a very accusatory/presumptuous approach right from the start.</span><br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">After responding to F girl, I explored her Tweets & found something I had come across previously. The theory behind "nightshade" plants/foods. A friend had told me about them just after my RA diagnosis, and I didn't really buy into it at the time. I think I had so much data to process about my new diagnosis, I let the nightshade theory slip out of my mind. I ate less beef (which is not a nightshade plant, obviously :D, but rather something I heard causes inflammation), but I didn't feel any different, so I let my diet slip back into normal beef consumption. But I researched the nightshade plant theory again, and I came to the conclusion that there might be something to this... so I decided, I'm going to try eliminating all nightshade foods out of my diet for a few days and see what comes. Nothing to lose, right? So I went grocery shopping this afternoon :) Toughest part will be avoiding sugar. Coffee is not nightshade, from what I gathered, but it's advisable to avoid it, decaf & regular. But I can commit to this for a few days, for sure! To be continued...</span><br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">So F girl may have gotten under my skin... but she also reminded me of something I had forgotten to explore :)</span><br style="font-family: georgia;"><br style="font-family: georgia;"><span style="font-family: georgia;">P.S. I was going to post a picture of my favorite tomato dish - Mozarella Cheese w/ Tomato & basil, but I felt it would be too tempting to look at ;-)</span></span><br /><a class="account-group js-account-group js-action-profile js-user-profile-link" href="https://twitter.com/#%21/fuckarthritis" id="462844595"><strong class="fullname js-action-profile-name"></strong></a>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com2tag:blogger.com,1999:blog-7008531276747263404.post-70416991429507483912012-01-16T14:32:00.010-05:002012-01-16T18:08:50.701-05:00A second chance<span style="font-family: georgia;font-size:85%;" >Before I write about anything else, I need to give some background information. It helps you understand certain decisions I've made & how these things will keep affecting my decisions for years to come.<br /><br />I've struggled with depression and anxiety in the past. But after I gave birth to my son, I actually had to go on medication to help me function. Thinking back, all I needed was a better support network. But where was I going to get it, from thin air? I had husbands' family, but in the end of the day, they were his family. They were not helping me with my newborn, since I was a stay at home mom. Stay at home moms are supermoms who never need help. At least that's what they thought. And as for husband's family... I would have to write a book to make any sense of that clan ;) And that book will have to wait, while I make friends with RA, the one I call my Evil Parent ;)<br /><br />So in 2006 I started on antidepressants, Effexor XR. It was prescribed to me by my OB/GYN. I think it was helping, since I was on it for some time. However, I wanted to wean off of it, because of the potential side effects of being on it for a long time. I had read horror stories of people coming off of it. So I went to see a psychiatrist, who only prescribed medications, and didn't actually offer any kind of cognitive therapy. She prescribed Depakote, which is a mood stabilizer. Then we were slowly decreasing the dosage of Effexor. It was sometime in January of 2007, when I started to wean off of it, and just after mid March I started feeling sick. I didn't think anything of it. I just thought I was exhausted from recent developments in my life. (I had just had my church wedding in the beginning of March). At the same time I got an upper respiratory infection and my doctor put me on Z-pak antibiotic. The first dose was 1000mg, pretty strong! I got so sick, I could not get out of the bed, nor take care of my little 3 year old. I got out of bed long enough to put on a Sesame Street dvd and then went back to sleep. Just so fatigued, generally ill feeling. I can't even describe it in words. I had a constant cold sweat, and felt so weak! I took my 2nd dose of Z-pak, but by then I was starting to connect the dots. The Z-pak is making me ill! A few days later my husband told me "You look kind of yellow/orange."<br /><br />That's when I must've looked in the mirror for the first time in how many days. And yes, I was orange! My eyes were orange! Not long after that we were headed to the ER... nobody knew what was going on, nobody knew what they should do with me! They did an abdominal scan & found that I have gallstones. But what failed to acknowledge (and take action on), were my liver enzyme levels! My liver was failing! They just told me to quit taking the antidepressants and mood stabilizers cold turkey! And then, get this - they told me TO GO HOME, AND COME BACK IN A FEW DAYS IF I DON'T GET BETTER. (!!!)<br /><br />Not knowing what else to do, we went back home. But 2 days later I went to another Emergency Room & the same fiasco continued there. I was not given food, I was weak as it is, I was eating ice chips, since they didn't know if I needed a surgery of some kind. I was suffering from the withdrawal symptoms of quitting my medications cold turkey. I was put on the sidelines & nobody knew what to do with me. Yes, her liver enzymes are through the roof, but we don't know what to do with her. HELLOOOO!? Is there anybody here who actually went to school for this? I was too sick to know what was going on.<br /><br />Then came an angel, Dr. B., my liver specialist! He put the whole ER in their place and I heard him raising his voice and saying "This is a healthy 30 y/o woman! Her liver is failing! You're not doing anything? Come on people, wake up!" So he took matters into his own hands & put me at ease, that he's going to take care of me. About an hour later, I was in a ambulance, transferred to Columbia Presbyterian Hospital. They have a whole floor for liver patients. That floor, I was told - people either don't come out of there alive, or they come out with a new liver. Initially my liver didn't seem to bounce back. Nations best liver specialists came to see me, interview me, asked details about my past alcohol drinking and Tylenol usage, trying to figure out why my liver was failing. Finally, my liver started responding to the meds! It was determined, that my acute liver failure was induced by Depakote & Effexor XR. Z-pak was not considered to be offensive to my liver. However, I believe my liver took a beating from the combination of drugs.<br /><br />So long story short... my liver has bounced back completely, but from this horrific, near death experience, I developed an extreme fear of medications of all kind. And now that I have RA, treatment of it has to be conservative. Sadly all medications go through liver. Most of the RA medications are very strong & potentially messing with my liver. My next post will be about my journey with my first rheumatologist & the treatment of RA. ~ Thank you for reading this. It was hard to write.<br /><br />NOTE: In addition to this - I'm in the process of writing a post about Levaquin triggering my RA. So in the future, when you hear me struggle with decisions about RA treatment. Keep these experiences in mind.<br /><br />NOTE 2: There's also a class action lawsuit against the makers of Effexor XR. Because of the effects it has on the liver :( Just found out today.<br /></span>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com1tag:blogger.com,1999:blog-7008531276747263404.post-9108323663920889702012-01-16T13:18:00.007-05:002012-01-16T19:33:29.705-05:00RA treatment ramblings, Chinese Herbs & Rheumatologist divorced me<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHL9xLY2RZJiSysmmv3waQv5UnF_CJOwpBMIcXrFNty0vIoK8jKrGVDEPm-mGau6TizjD1G6bo5zwQOSQ2MIhkYT60SKTetC8S8mxpE0TEdeKwxyZwu1d218iWNRhiQ6xSYsReCMKNm3bQ/s1600/IMG_1266-1.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 228px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHL9xLY2RZJiSysmmv3waQv5UnF_CJOwpBMIcXrFNty0vIoK8jKrGVDEPm-mGau6TizjD1G6bo5zwQOSQ2MIhkYT60SKTetC8S8mxpE0TEdeKwxyZwu1d218iWNRhiQ6xSYsReCMKNm3bQ/s320/IMG_1266-1.JPG" alt="" id="BLOGGER_PHOTO_ID_5698392382708578626" border="0" /></a><br /><span style="font-size:85%;"><span style="font-family:georgia;">I've had so much on my mind this past week. I've wanted to write a book. I've needed to write a book. I wasn't able to sort my thoughts perfectly, so I didn't write at all. So instead of having my thoughts in perfect order, I'll just write, regardless of how it flows. Trying to be kinder to myself, is a learning process.</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">So I was diagnosed with RA, back in end of March 2011. Initially my rheumatologist (lets give her a name - </span></span><span style="font-style: italic; font-family: georgia;font-size:85%;" >Dr. Pearls</span><span style="font-size:85%;"><span style="font-family:georgia;">, she was wearing a pearl necklace last time I saw her) wasn't 100% sure it was RA, so she started the treatment very mildly with muscle relaxants. I was hopeful that her theory of me being able to sleep better quality sleep would get rid of the pains. I took a very conservative dose of muscle relaxant (one pill, not sure how many mg) every night for maybe a week. I wasn't feeling any better, any less pain, sleeping any better, but I was sleepier, more groggy & just not energetic enough to get through my days. I'm a mother of a busy 7 year old boy, who I call Bumble Bee, and with that comes responsibilities, and being groggy wasn't an option... Finally, I was on the phone with a friend and I was telling about a vision that just went through my head, a couple of them... and I realized I was hallucinating! So that was the end of my muscle relaxant days...</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">By my next appointment, Dr. Pearls had the results of my blood work. She got her confirmation, all the numbers proved I in fact have RA. That's when she told me, I need to get x-rays on my affected joints. She also let me choose, what medication I'd like to try first. She gave me the potential side effects and then let me pick out of two. I picked Azulfidine. She told me to build it up slowly to 8 pills a day. I thought to myself, 8 pills is like a meal on its own, how can anyone take 8 huge pills of anything a day, without feeling more sick? I started, feeling hopeful, and I barely got to 4 pills/day, and the gastrointestinal effects were unbearable. I stopped taking them before I was going for my next appointment. The appointment that would turn out to be my last one with her. She had the x-ray results (radiologists written report of his findings) and according to that </span></span><span style="font-weight: bold; font-family: georgia;font-size:85%;" >there were no changes in my joints</span><span style="font-size:85%;"><span style="font-family:georgia;">. However, I had asked a copy of the x-rays & I had seen them, shared with my friends & my husband, who is a physical therapist. <span style="font-weight: bold;">We all saw the changes</span>! And they matched my pain & inflammation! They also matched the reduced space between joints! I couldn't believe A RADIOLOGIST had read my scans. I was convinced it was a 1st grader. Dr. Pearls told me, the report says, there's nothing wrong with your joints. Nothing. Wrong. "I've got the results right here." She was getting a little annoyed with me questioning the report. But I let it go. I had already decided to try a more holistic approach, with Chinese Herbs. So this is the time things got interesting...</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">I asked her, if she'd be supportive of me trying a more holistic approach. Acupuncture & Chinese Herbs. That's when she gave me her speech, borderline rant. "You have RA, the most degenerative kind, based on your blood work. There's no cure for RA. So no, I can't give you my blessing on trying a holistic approach. I can no longer be your rheumatologist. And I'm going to write in the notes: Patient will return when ready to receive antirheumatic treatment." I left the office, feeling like my doctor just divorced me.</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">If you read my previous post on my acute liver failure & Levaquin triggering my RA, you'll understand my hesitance to go heavy on RA treatment. On one hand, I understand the importance of treating RA aggressively early on. On the other hand, I'm paralyzed by the thought of starting the process of elimination with DMARD's or Biologics. I see the changes in my joints already, and some days I'm panicking. WHAT SHOULD I DO?</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">I'm currently taking Chinese Herbs for my RA. My herbalist is Dr. Zhang. He specializes in autoimmune diseases & liver disease. He has one herbal combination called AI#3, that works MAGIC! It helped me have a really active summer! I was able to run stairs, up and down! I functioned on close to normal level, I almost forgot I had RA! The bad news came in September... my period was a no show because of this herbal mix. AI#3 is so strong, it messes up with the hormones. Now, I don't mind not having periods... but the consequences of very irregular periods can be dangerous. So I had to stop that combo and that's where the downhill started... I stopped taking all the herbs. I think I had forgotten how disabling the RA pains & stiffness were. I suffered through September, October & November... by November, I had lost my will to live. I thought, if this is what my life is going to be like, day after day... it's not worth living.</span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">Then one morning in end of November 2011, I was crying from pain & sheer lack of fight left in me... my son was looking at me, feeling helpless. He didn't know what to say, so he approached me and put his arms around me. His head was against my chest. Then he looked at me "Mommy, your heart is beating." He had amazement in his eyes. That's when I broke down and agreed, "yes, my heart IS BEATING!" That moment, I found my reason to live. My reason to not give up! I realized, I had been given life & by not fighting for it, I was spitting in God's face. Week after that I was back on the herbs. A little different mix, but I was doing SOMETHING & had found my will to live again. </span><br style="font-family:georgia;"><br style="font-family:georgia;"><span style="font-family:georgia;">I will write more about my experience with the new mix of herbs some other time. Having been diagnosed with RA, requires mental stamina from me like never before. I've been through a lot in my life, but being diagnosed with a chronic illness - I have to dig deep for a new level of strength.<br /><br /></span></span><span style="font-family: georgia; color: rgb(102, 51, 255);font-size:100%;" >Count the garden by the flowers, never by the leaves that fall. Count your life with smiles and not the tears that roll. ~ Author Unknown</span><br style="font-family: georgia;">Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com5tag:blogger.com,1999:blog-7008531276747263404.post-7131037295925506062012-01-12T19:31:00.010-05:002012-01-16T23:08:39.300-05:00My RA diagnosis<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk7y91c8E_IM3_0DN2AiGQfK2DsTS5IbuHronI9eUC0wnSef2Sifya8IncZfiIbAYzEiGbZ1lPPvhxXpX01OHJgigHI_kWmDwtPnIh-hcx_wV-db1WStKj38QrfLjy6VKgQS8F0CsGTVrV/s1600/IMG_5434.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 285px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjk7y91c8E_IM3_0DN2AiGQfK2DsTS5IbuHronI9eUC0wnSef2Sifya8IncZfiIbAYzEiGbZ1lPPvhxXpX01OHJgigHI_kWmDwtPnIh-hcx_wV-db1WStKj38QrfLjy6VKgQS8F0CsGTVrV/s400/IMG_5434.JPG" alt="" id="BLOGGER_PHOTO_ID_5696918273615807682" border="0" /></a><br /><span style="font-family: georgia;font-size:85%;" >Not quite sure where to start today. My head is a total mess of thoughts that conflict with one another. So this & the upcoming posts will probably be very “free hand” kind of post. You may even wonder, how does all this tie in? When I get everything I need to say, out of my head, some of it make a whole lot of sense, some won't.<br /><br />As many of you know, I am in the middle of separation proceedings. It has been an ongoing process since June of 2010. First we went to see a mediator, to get a “Memorandum of Understanding” which basically explains everything we’ve agreed on in detail. We met with the mediator until May 2011. Sometimes we saw her once a week, sometimes once a month. It really depended on holidays & everybody’s schedules. We finally got into an agreement about the terms of our separation & I thought, this is great, no lawyers involved! Although the process of mediating our separation was stressful, it wasn’t “take me down to my knees” –kind of stress. Just hitting my head on the wall –kind. It was in some ways a slow death of something that once was beautiful, and something I cherished. Painful, yes.<br /><br />In the midst of the mediation, October 2010, I had a upper respiratory infection, and my GP (also a pulmonary specialist) prescribed antibiotic named Levaquin. Even though I have an aversion to drugs (my body is just very sensitive, from A to Z), I wanted to feel better & gain my strength back, so I started taking them. I finished the whole set, I can’t remember how many days it was. Probably 7 or 10 days. I don’t know if the length of it really matters, but I can obviously get a list of everything I’ve purchased from my pharmacy (and I will!).<br /><br />A week after I had finished the antibiotic, I went Christmas shopping wearing my new PADDED, super furry, comfy boots, that fit me so well, no pain, discomfort, nothing. While I was walking around the Outlet Mall, for maybe 4 hours, my feet started hurting. The balls of my feet & heels, to be more exact. I remember thinking, “Oh, I must’ve walked too much today.”, even though I’m a walker at heart & have always loved walking. I never got pain in my feet from walking, never. My friend massaged my feet that evening, and it hurt too much, just to have someone massage them. That was the first day of my pain, and from there on out, my pain only got worse and started affecting my hands & wrists. Getting up in the morning was becoming more painful, stiffness in my feet & generally all over. The pain was in my fingers, wrists, feet and my left shoulder. I went to see my GP multiple times, and they ran different tests, all came back negative. I went to see a neurologist, thinking I have carpal tunnel syndrome and it’s also affecting my wrists and fingers. Then in the beginning of February, 2011, after having done so much research on my own, I demanded to be tested for Rheumatoid Autoimmune Disease (also known as Rheumatoid Arthritis). They were very cooperative and followed my request. The GP’s assistant was actually sympathetic and told me, we’ll run all the tests and we’ll figure this out. That’s when I broke down. Having someone actually hear me, made a big difference.<br /><br /></span><span style="font-weight: bold; font-family: georgia;font-size:85%;" >The following is what I wrote about my test results, on Valentines Day 2011:</span><span style="font-family: georgia;font-size:85%;" ><br /><br /></span><span style="font-style: italic; font-family: georgia;font-size:85%;" >“My lab results are in :(( Not good news.<br /><br />But I still think it's much better than what the doc first started talking about. She said, have you ever been diagnosed with any STD's? And I'm almost screaming in the phone, WHAAAAAAT???? lol, and she says, well, I have to talk to you about this, when can you come back to the office? lol... I said, what are you talking about, STD???? And then she looked at her papers and asked, "this is Mary, right?" hahahahahah... I said, no, this is Sari! She was all apologetic, and embarrassed, but frankly, I was just relieved, lol! I have never had STD's of any kind and I don't intend to, lol! But the news I (Sari, not Mary, haha) got... worry me, and I do need to make an appointment with a specialist :( It will be a lifelong problem, and it will never get better, it can only be slowed down and managed :(( Not looking forward to getting older with this diagnosis. Sad ending for my Valentine’s day, 2011....”</span><span style="font-family: georgia;font-size:85%;" ><br /><br />Even I can see, I didn’t have a clue, really. Having some kind of STD would be better than this, I’m convinced. I called my liver specialist, my favorite doctor, to ask for a referral for a rheumatologist. He gave me the same name as my GP’s office, so I called them and got an appointment. I believe it was beginning of March 2011. I was very nervous about my appointment.<br /></span><span style="font-weight: bold; font-family: georgia;font-size:85%;" ><br />This is what I wrote the day before my appointment:</span><span style="font-family: georgia;font-size:85%;" ><br /><br /></span><span style="font-style: italic; font-family: georgia;font-size:85%;" >“My rheumatologist appointment is tomorrow, finally. I've had to wait for 3 weeks to be seen, and it's been a long time, I tell ya... but I'd rather wait to be seen by a great doctor, and suffer while waiting, than be seen quickly by somebody who asks me "can you come tomorrow?" lol :) I really want to get this right, and be treated/informed by the best.<br /><br />I'm also going to get a consultation with a Chinese Herbalist aka Dr. Zhang, and hope I can afford the herb treatment plan from him. He comes highly recommended, as he is a Western Doctor AND a Chinese Med. Doctor and I have a close friend who knows the magic he's been able to make happen.<br /><br />I've had to stop doing Yoga until I see my doctor, as well. The pain I have every day needs to be managed somehow and the inflammation reduced significantly, before I can continue. And the Rheumatoid Arthritis requires a specific kind of Yoga, too. I really can't wait to start feeling better... and start enjoying mornings again & be able to continue my daily activities with more energy and less stiffness & pain... to be continued... “</span><span style="font-family: georgia;font-size:85%;" ><br /><br />I still didn’t have a clue. I thought there’s some magical drug that will give me my life back. I also thought my rheumatologist is great, she just had to be, since she came so highly recommended by people I trusted. Oh boy, was I wrong.<br /><br /></span><span style="font-weight: bold; font-family: georgia;font-size:85%;" >This is what I wrote after my appointment:</span><span style="font-family: georgia;font-size:85%;" ><br /><br /></span><span style="font-style: italic; font-family: georgia;font-size:85%;" >“ I'm all out of words & confused with all this medical stuff. I know so much, and not enough. So I keep waiting for the answers... for now, I've been given muscle relaxants to improve my sleep and perhaps give my body more restorative kind of sleep. Which is needed for the body to reset for a new day, and for the ability to tackle everyday life challenges... not to mention the much more challenging stuff, like divorce. My rheumatologist thinks, that I'm not able to reach the last 2 stages of sleep every night, for a long time now. And that's where the reset happens. So the muscle relaxants would put me to that stage faster and with the improved quality of sleep, my body might start healing itself.<br /><br />She has not given me a diagnosis yet, since it's a process of elimination... I'm thinking she's leaning towards Fibromyalgia and maybe some other stuff in addition to that. Fibromyalgia because my inflamed joints didn't feel warm to her touch. (I know they had been and were at the time of the appointment). I had made the mistake of taking ibuprofen before my appointment, to be able to get there, eh? Life is a mystery, no doubt... To be continued... “</span><span style="font-family: georgia;font-size:85%;" ><br /><br /></span><span style="font-weight: bold; font-family: georgia;font-size:85%;" >And finally the diagnosis:</span><span style="font-family: georgia;font-size:85%;" ><br /><br /></span><span style="font-style: italic; font-family: georgia;font-size:85%;" >“ Official diagnosis: Rheumatoid Arthritis. At 34 (4 days short of 35 pfft). Unreal. *insert a face with tears* “</span><span style="font-family: georgia;font-size:85%;" ><br /><br />Part 2. coming tomorrow, I hope. With RA, it's one day at a time, and so is with this blog.</span>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com2tag:blogger.com,1999:blog-7008531276747263404.post-189109237909197052012-01-06T10:40:00.001-05:002012-01-16T23:09:32.487-05:00The Warrior in me<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLXgV19sY61aUaI_vYSRdYRtwP-mVwArmXewtfsGFUtBmiXM1S2nOW_lM3BFucWyexorx96DMB_rcMIUwvfsFbhWhYLefmFtSFrE7zVIHmvaMldG3iizcVKVdY418RYcRAwSb76Yy2tz56/s1600/IMG_1785.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLXgV19sY61aUaI_vYSRdYRtwP-mVwArmXewtfsGFUtBmiXM1S2nOW_lM3BFucWyexorx96DMB_rcMIUwvfsFbhWhYLefmFtSFrE7zVIHmvaMldG3iizcVKVdY418RYcRAwSb76Yy2tz56/s320/IMG_1785.JPG" alt="" id="BLOGGER_PHOTO_ID_5694541139809680882" border="0" /></a><br /><div style="font-family: georgia;"><span style="font-size:85%;"><b>One bucket of red swollen joints with a constant sprinkle of pain & stiffness</b></span></div><div style="font-family: georgia;"><span style="font-size:85%;"><br /></span></div><span style="font-family: georgia;font-size:85%;" >Originally this blog was going to be about me going through separation and finding a safe little place for me to share my thoughts. Maybe rant and rave a little. Let out some steam. However, since I first started this back in June 2010, my life has turned upside down by a devastating diagnosis of Rheumatoid Arthritis (or the new, more descriptive term <i>~</i> Rheumatoid Autoimmune Disease). Since my diagnosis (just a few days before my 35th birthday), I've often heard people say, I won't allow myself to be defined by this disease. However for me, it is currently defining me. I'm trying make friends with RA. But we don't get along so well, at least not yet. As a person, who thrives on familiarity and the feeling of being somewhat in control, this diagnosis has shook me to my core & does so every day. It is unpredictable, disabling, controlling, puts me in my place when I've done a little too much, or not enough ~ kind of like an evil parent. As I get to know my new Evil Parent better, maybe we can agree on terms, where we'd be siblings or friends, instead. I'm hoping to find balance and learn to manage my RA better. </span><div style="font-family: georgia;"><span style="font-size:85%;"><br /></span></div><div style="font-family: georgia;"><span style="font-size:85%;">Speaking of balance and managing... Last November, I felt so alone, depressed & isolated with my disease, that I was googling and researching RA, like a mad woman. I was trying to figure out the best way to control the inflammation & eliminate the pain. But what was hurting me most at the time, was that nobody understood & that my support network was non-existent. I stumbled upon a website/blog named <a href="http://www.rawarrior.com/">www.rawarrior.com</a> and I felt I had fallen into a "Heaven for RA information"... instead of feeling lost, I got lost in her blog! In a good way! Everywhere I looked, every blog post I read, I gained more hope. My internal monologue was along the lines of "Yes, yes, yes, me tooooo!" Now I was not big on Twitter and I could never really get into it, but after I clicked Kelly's (aka Rawarrior) Twitter link, I dived into a world of incredible RA community! There are people like me everywhere, people who are in much more advanced stage of this evil disease. Some days it's encouraging, some days the gloomy thoughts take over and the future looks bleak. But I'm much more capable dealing with the reality of RA, when I know my support network is just a click away. There's no cure for RA at the moment, so no other word describes the daily battle quite like <b>WARRIOR</b>. Thank you Kelly Young, who I often refer to as my savior.</span></div><div style="font-family: georgia;"><span style="font-size:85%;"><br /></span></div><div style="font-family: georgia;"><span style="font-size:85%;">- I have so much more to write about, but instead of writing a book as my first blog post on this, I will write shorter ones & also give my swollen hands a break :)</span></div>Secret Raindropshttp://www.blogger.com/profile/05568061118530640065noreply@blogger.com0