Wednesday, November 7, 2012

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

Saturday, October 20, 2012

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.

Thursday, October 18, 2012


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.

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.

Wednesday, April 18, 2012

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 16th 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…

Monday, April 2, 2012


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?
Week ago or so, I had a dream about fog, driving into very thick dense fog. Here’s the dream interpretation:

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.

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,  rolled down… woke up…

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.  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.

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.  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.