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

Toxins everywhere

I 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!)

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?

As I was researching the previous topics, I came across this website Green and Healthy - Sick House Syndrome. 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.

Milestones

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 important milestones, events, thoughts I've had since April.

True.

So I found a new rheumatologist, who made me feel all warm & fuzzy inside. That was April of 2012. I had to increase my Prednisone 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 self esteem, 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.

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.

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 Lichen Planus. Some doctors believe it's an autoimmune disease 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.

Thankfully I was able to begin Enbrel injections (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 - 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!).


We also finalized our separation agreement. 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 living in a limbo, 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.

My little pumpkin with his pumpkin :)

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 role model for marriage.

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 insane mental anguish 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.

~ Thanks for reading my long update  ~

Onwards & hopefully upwards.

Dr. New Rheumatologist

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!

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^th appointment & that was yesterday.

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.

• Knows what they're doing +
• Has waiting time less than 30 mins
• Speaks fluent English +
• Is a woman
• Listens to me +
• Believes me +
• Won't tell me "I've been doing this for 30 years" +
• Has been a rheumatologist for 10-15 years max 
• Understands my complicated medical history +
• Takes me seriously! +

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 ;) The bottom line is, 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.

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.

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 Depo Medrol. 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!

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!

I feel a sense of empowerment 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! I need to name my new doctor, any ideas? :)

My lil' cutie March 2012 :)

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…