Uncertainty

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:

Fog

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.

Quest for Life

Just 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 :)

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...)

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 :)

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! :)

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:

1. Knows what they're doing
2. Has waiting time less than 30mins
3. Speaks fluent English
4. Is a woman
5. Listens to me
6. Believes me
7. Won't tell me "I've been doing this for 30 years"
8. Has been a rheumatologist for 10-15 years max.
9. Understands my complicated medical history
10. Takes me seriously !

A leader, once convinced that a particular course of action is the right one, must....be undaunted when the going gets tough." Ronald Reagan

Link between hormone imbalance and RA

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.

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.

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...

The key to life is balance.

So all in all to summarize my thoughts:

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."

Following is a list of some interesting websites I came across in my research in reference to this topic.

Women to Women/Quieting Inflammation

Hormonal Imbalance and RA Link Studied

Hormone therapy for RA

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...

Forbidden Happiness

I had a day out of this world today! Things were going my way all day!

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!

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!

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!

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?

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.

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!

P.S.S. After I found the rheumatologist, I learned he doesn't take my insurance! But I keep searching!

" Life's so ironic. It takes sadness to know what happiness is, noise to appreciate silence & absence to value presence. "

Does the elimination diet work for RA?

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.

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.

How my body reacted

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: "If your body is responding this strongly to the withdrawal of these foods, maybe there's your clue, you shouldn't eat them..." 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!

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!

On a side note, if I had stayed on this elimination diet for a month, would the results have been different? 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

Onwards & upwards, friends!

Levaquin

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.

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 Askapatient 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.

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.

The F*** Arthritis Girl

Today was a perfect example of how a negative event can turn into a positive one.

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.

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...

So F girl may have gotten under my skin... but she also reminded me of something I had forgotten to explore :)

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 ;-)

A second chance

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.

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 ;)

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."

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. (!!!)

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.

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.

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.

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.

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.

RA treatment ramblings, Chinese Herbs & Rheumatologist divorced me

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.

So I was diagnosed with RA, back in end of March 2011. Initially my rheumatologist (lets give her a name - Dr. Pearls, 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...

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 there were no changes in my joints. 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. We all saw the changes! 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...

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.

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?

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.

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.

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.

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

My RA diagnosis

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.

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.

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!).

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.

The following is what I wrote about my test results, on Valentines Day 2011:

“My lab results are in :(( Not good news.

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....”

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.

This is what I wrote the day before my appointment:

“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.

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.

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... “

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.

This is what I wrote after my appointment:

“ 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.

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... “

And finally the diagnosis:

“ Official diagnosis: Rheumatoid Arthritis. At 34 (4 days short of 35 pfft). Unreal. *insert a face with tears* “

Part 2. coming tomorrow, I hope. With RA, it's one day at a time, and so is with this blog.

The Warrior in me

One bucket of red swollen joints with a constant sprinkle of pain & stiffness

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 ~ 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.

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 www.rawarrior.com 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 WARRIOR. Thank you Kelly Young, who I often refer to as my savior.

- 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 :)