Prednisone - The Choice

Face to face with life & death, present moment & future

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.

Love this necklace, planning to buy it... maybe I will, soon.

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.

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.

Hoping & praying for better times to come.

****************************************************************************

 

 

~ 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.~

* Refuse to Sink -photo by "klacustomecreations" from Etsy.com

D a R k N e S s

Darkness. So much friggin darkness. I need to get out of my head.

My heart is breaking

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.

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.

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…

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.

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.

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. 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. 

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… 

What makes this worrisome for me is the fact that I will be flying to Finland on the 27^th 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.

Enbrel powder/solution 25mg kit

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…  However, sometime 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…

Rheumatologist office, room 3

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  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 :) 

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...

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.

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.

Food for thought

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

Impressing the girls

My 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"...

She was a Grand Mother

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.

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.

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.

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. 

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. ♥ 

Little One, me & my Gramma, August 8 2012

My Grandma, my best friend 1919-2013

To my 93 year old grandma, who slept away today.

Thank you for teaching me how to knit, sew and crochet.
Thank you for teaching me how to play card games and shuffle the cards.
Thank you for teaching me how to cook and bake.
Thank you for teaching me how to take care of a garden.
Thank you for teaching me where milk and eggs come from.
Thank you for allowing me to eat raw potatoes and turnips.
Thank you for allowing me to explore freely on your farm & lands.
Thank you for going on adventures with me.
Thank you for making me strong, outhouse and newspaper -strong.
Thank you for teaching me how to be a lady, but a tough one.
Thank you for having a vegetable and fruit garden, without it I wouldn't know what real strawberries and peas taste like.
Thank you for being patient with me.
Thank you for being my best friend.
Thank you for trusting me.
Thank you for loving me.
Thank you for being kind to me.
Thank you for respecting me.
Thank you for letting me be a child, yet making me feel like a grown up that I wanted to be.
Thank you for the non-material gifts you gave me, your wisdom & most importantly -

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 ♥

Forever in my heart, Sari

~ It's one of nature's way that we often feel closer to distant generations than to the generation immediately preceding us.  ~ Igor Stravinsky

~ A grandmother is a little bit parent, a little bit teacher, and a little bit best friend.  ~ Author Unknown

Bipolar, psychotic & manic

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.

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.

 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 :( 

I’ve been hurt & I can no longer trust him - but I can’t help it - I miss the good times, I miss my friend. 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!

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)

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. 

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 & that my friends, is something to celebrate. Still continuing taking Enbrel, 25mg, twice a week - preservative free injections. RA is 70% 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.

A dramatic sunset from "our rock"

But I do miss my friend. Hope I’m able to stick to my guns & 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. ♥

Our favorite flower

Gastric denial

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.

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).  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.

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.

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  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.  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.

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 :)

“In matters of style, swim with the current; in matters of principle, stand like a rock.” -- Thomas Jefferson