Progess(ive)

Hey friends!

So, in the months since my last post (10 months - my bad!) a lot of things have happened. I finished school at GSC, started school at UGA, injured my knee, tried a raw diet (no fun), and had Rocky Mountain Spotted Fever. (Also… I've always thought that was called "Rocky Mountain Spider Fever." Hehe.) A few months ago, in July, I started going to a place in Atlanta called Progressive Medical Center that is known for treating chronic illnesses and other health issues. (It's also owned and operated by Christians - how awesome!)

Found this in the ladies room. So applicable. :)

During my first visit (7/2/12), I talked with Dr. Epstein, an osteopathic doctor who asked about my symptoms and decided which blood tests to run (I was also given a few tests to take home… if you know what I mean). He also talked to me about weaning off all of my medications (for everything from migraines to muscle spasms) because the combined side effects were harming me more than they were helping. 

In preparation for my second visit (7/10/12), I had to stop taking my GERD medication because it would interfere with a test I was going to get called a gastrogram. I also stopped my anti-inflammatory med (for my knee) because of suspicions that it was causing stomach pain. Unfortunately, my heartburn was back the next day and my knee began to ache intensely. By the time 7/10 rolled around, I had to do a 12 hour food and drink fast. Food fasts are ok, but drinking fasts are no fun. 

For the gastrogram, I had to swallow a capsule that sent signals to a monitor that then sent signals to the doc's computer. The purpose of the gastrogram was to check the pH of the stomach. The first few minutes were fine and uneventful, but then Dr. Wor had me swallow 5cc's of baking soda water to see how my stomach reacted to food. First off, baking soda is absolutely disgusting. I can't believe I put it in my baking! Ewwwww. Imagine fish and salt and lots of it. After twenty minutes, Doc informed me that my stomach doesn't produce enough acid (a condition called hypochlorhydria), which would explain some of my symptoms, as I couldn't absorb enough minerals or protein, and also makes me more susceptible to infections (including mono). Who knew stomach acid was so important? I've been treating that for the past few months with hydrochloric acid capsules. As long as I take one after eating, I don't have heartburn (woo!).

I talked to a naturopath, Dr. Fink, about my test results and found out I have a type of hypothyroidism called Hashimoto's disease, which is an autoimmune disorder where antibodies attack the thyroid gland. Apparently I wasn't diagnosed earlier because PMC has a different set of qualifications for hypothyroidism than typical medical practices. Dr. Fink put me on a lot of supplements, and since then, I've continually had my supplements changed and adjusted.

In between that appointment and my next appointment, I found out that I had Rocky Mountain Spotted Fever. I tried to treat it with cipro, as the drug of choice to treat RMSF is doxycycline, and I just so happen to be allergic to it. Unfortunately, the cipro didn't work, so I had to deal with a week of doxycycline. That was definitely a rough week, but I'm thankful that I was able to get that out of my system.

My next appointment was a month later, where I got the rest of my tests results. I found out that I have twelve food allergies (almond, artichoke, sodium nitrate, broccoli, cabbage, cinnamon, milk, egg yolk, flax seed, gluten (duh), grapefruit, cane sugar, swordfish, and whole wheat). A few of those are only mild allergies, so I should be able to consume some of them again in a few months. I also found out that my cortisol levels are WAY too high, meaning that my adrenal glands have been overtaxed and have been producing way too much adrenaline, which explains a lot of my fatigue. That is currently being treated with a few supplements, but I'm not sure how long it will be until I actually feel results. I also found out that because of this, any stress makes me feel a lot worse. Lame. I had a neurotransmitter test drawn that revealed that I produce too much dopamine and epinephrine, and not enough GABA. I have no idea how I'm going to get normal amounts of any of those, but I'm confident that the docs at Progressive have a good plan. :)

A few weeks ago, I went back for another visit and met with a new doctor (Dr. Burdette), who decided that I needed some antiviral IVs to lower the amount of epstein-barr still in my system. I had three sessions of something called MAH and three sessions of Myers. During the MAH, I would get 250ccs (about a cup) of blood taken out, had heparin and ozone added, and then it was sent back into my body. The Myers was basically just a vitamin cocktail. The IVs weren't too bad, except they always made me very tired (and I fainted on my last day of MAH - lame). Mom and I decided to spend a week in Atlanta so we wouldn't have to drive 3.5 hours everyday, and we took Bingley, so that wasn't too bad. :)

The part of MAH where they take out my blood.

During the same week as my IV sessions, I went to PMCA's pain therapy and had my knee and back treated with something called "Matrix" that would send electric currents through my muscles. It was supposed to retrain the muscles to hopefully stop my muscle spasms. After around 10 treatments, my back and knee were no better, so we decided to stop treatment for the time being. We might start it up again later, but we'll see. :)

After my last Myers, I met with Dr. Burdette again and she asked me if I was feeling any better. Unfortunately, I really haven't been feeling any better since July, and to be perfectly honest, I've actually been feeling a lot worse. My fatigue is really bad, and leaving that house has become really difficult. During my second week at UGA, I was so tired by the time I made it to class that I felt like crying and I felt incapable of even getting up out of my desk. At the end of my second week, I decided to withdraw from my courses with a hardship withdrawal. Thankfully my parents were totally on board, even if we couldn't get a refund for my classes. (We did manage to get a partial one. Woo!) Deciding to leave school was really hard, as I genuinely love to learn, but I really think it was the best option for me. Thankfully, Dr. Burdette was very understanding and actually asked me if I was frustrated with my progress. That's the first time any doctor has actually asked me that in 6 years. Dr. Burdette decided to draw a few more blood tests to see if my epstein-barr levels have gone down at all. I found out that most people generally feel better right after they have their IVs, but as I don't feel any better, I may have to get more before I actually feel any changes.

Speaking of my hardship withdrawal… I went to my primary physician to get the doctor's note required to withdraw. Unfortunately, that didn't go well at all. I saw an NP first, who told me that all of my symptoms were due to depression and that I was on far too many medications (despite the fact that I was only on 4 at the time). I left feeling pretty discouraged, and decided to go back in two days to see my actual doctor. That didn't go well either. First, she told me I was on too many medications (as it turns out, their records were very wrong), and she was under the impression that I was a drug addict. After she found out that I wasn't taking the medicine she thought I was, she told me it was all depression. Then, she decided that I should NOT take an anti-depressant. What? Anyway, I was finally able to get a hardship withdrawal letter and I probably will never go see that doctor again. Eck. I'm pretty sure I broke out in hives during that super fun session.

One reason I'm so thankful for the doctors at Progressive is because they believe me and take every symptom seriously. I have never once felt like my pain wasn't real. Also, the other patients there are SO kind. I met a guy with Lou Gehrig's (which is an incredibly difficult and deadly condition), but he was so kind of and so positive about everything. I also met a cancer patient who asked me about my "malady" and he was so kind. I actually saw him a few more times during my IVs and Matrix. (His name was Larry.)

Currently, I'm taking about 35 pills a day (most of them are supplements - I'm only taking 4 Rx medications - woo!), which is really overwhelming, but if it'll help me get better, I'll continue doing it for the rest of my life. No joke. Even though I haven't started feeling any better, I'm still hopeful that it'll happen someday. 

I have to admit that it's really hard to stay positive about everything I have to deal with, especially because not many people try to understand my condition. It's really difficult for me to explain what I deal with, and when I try, I usually end up making it seem like it's not a big deal. It means a lot to me when people genuinely want to know how I am and take the time to research my condition. I'm not asking you to run to my aid, but some awareness would be greatly appreciated. :) I love being invited to hang out or to go somewhere, but some days it's just a little too hard, and I never ever ever want my friends or family to feel like I'm neglecting them - some things are just a little too strenuous for me to handle.

In other news, I joined a small group at the end of August with some college girls from Athens Church. I'm still getting to know all of them, but I'm incredibly thankful to be developing some Christian friends and I look forward to the next few months and years with them!

As always, thank you so much for taking the time to read this! Love you all! God bless!

Jules

You can call me Fibro-Girl!

Hello, family and friends!

I've decided to start this blog for a few reasons. Mainly so I can keep all of you updated with my fibromyalgia - it's hard for me to talk about that out loud without getting emotional, so I find typing it to be a far easier way to communicate. Also, I want to be able to rejoice and share with you guys all of the great things that God is doing and has done in my life. (And part of my fibromyalgia treatment is to share what's going on with my friends and family. Can do'sville, babydoll!)

My fibromyalgia story begins when I was 15. In the fall of 2005, I contracted mononucleosis and had to take sick-leave from school for a few weeks. For the next year, after recovering from my initial diagnosis of mono, I struggled with my health - every time someone coughed in my direction, I seemed to get sick. I would start to recover and try to be more active, but any exertion made me feel like I'd been hit by a truck for the next two weeks. Eventually, that pain was happening almost every day. I had pain all over my body that never really went away. I had severe body aches, frequent viruses and infections, migraines, skin sensitivity, extreme fatigue, and rosacea. After some googling, my mom and I decided that I might be gluten intolerant, so I stopped eating wheat. I originally felt a whole lot better, but that faded and I was once again in pain. The idea that I might have fibromyalgia popped into my head around the summer of 2007, but when I asked my doctor about it, she scoffed and ignored the majority of my symptoms. That fall (Oct. 2007), my health had worn me down in so many ways that I couldn't go back to school. 

My parents were great advocates for me - they found a program for me to continue my education and took care of everything with my previous public school, although I did have to re-do the half semester I had started at OCHS. I started to do an independent study program with the University of Nebraska-Lincoln where I had to teach myself. The curriculum was incredibly difficult, but I finished three years later in 2010. Throughout this time, I continued to have health issues, although my doctor dismissed it as depression. I eventually saw countless other doctors (neurologist, gastroenterologist, an abdominal surgeon, several chiropractors, as well as several internal medicine doctors), but no one knew what was going on. My blood work was great and all of my CT and hida scans turned out wonderfully. Thoughts of fibromyalgia entered my head again, but I continually dismissed those ideas.

Later in 2010, I enrolled at GSC and started feeling a lot better, even though I never felt 100%. By December, I felt really sick again. I saw my regular doctor, and was told once again that I didn't have anything wrong. By May, I finally found out that I had gallbladder disease and had a cholecystectomy (gallbladder removal) just one week before my summer course started. I seemed to be doing better, but fell back into a bad spell two months later and eventually had an exploratory laparoscopy that revealed a hemorrhagic ovarian cyst and appendicitis. My surgeon cleaned up the internal bleeding and removed my appendix. Five days later, my fall semester started.

After several weeks of recovery, I realized that, while my abdominal pain was gone, all of my other symptoms were still there, and some had even gotten worse. That leaves us here, in December 2011. 

During a visit with my primary physician, I was put on some medicine known to treat fibromyalgia (cymbalta) and others to control my pain level (lortab and robaxin). My doctor hadn't directly said I had fibromyalgia, but I decided to start up my research again and realized that I had a very high chance of really having fibromyalgia, as I was exhibiting the majority of problems known to be symptoms. During my follow up appointment my doctor gave me the official diagnosis of fibromyalgia.

This was initially a great thing for me. Giving my pain a name felt empowering - if it had a name, I could beat it. Unfortunately, fibromyalgia isn't something that can be beaten. It's a chronic condition that never goes away. It's a daily fight. One good thing about giving it a name, however, has been knowing that my pain is real.

Fibromyalgia is a disorder, or a syndrome, that is characterized by widespread musculoskeletal pain that has no officially known cause, although it has been known to follow a physical or emotional trauma. My doctor and I are confident that my fibromyalgia stemmed from my bout with mono. New research has revealed that fibromyalgia may be a hypersensitivity of the nerves. There are a multitude of fibromyalgia symptoms, so I'll keep it specific and only include the main ones that affect me:

•  widespread muscle and joint pain that can feel like a deep ache or a stabbing/shooting pain
•  extreme and continued fatigue
•  insomnia
•  depression
•  headaches
•  skin sensitivity
•  bladder abnormalities
•  numbness in random places
•  memory and concentration problems (also known as brain fog or fibro fog)
•  prolonged muscle spasms
•  palpitations
•  immune dysfunction
•  rosacea
•  light, sound, and heat sensitivity
• GERD (gastrointestinal reflux disease)

Unfortunately, while most non-fibro people may experience some of these symptoms every once in a while, these are things that I deal with every single day. Some days I need a lortab just to sit comfortably, while others I can manage without any pain medication. There is no inflammation involved with fibromyalgia, which is both and good and bad thing. Good because, well, there is no inflammation! Bad, however, because NSAIDs really don't help me at all. 

Thankfully, I have a great and supportive family. These past few years have been really difficult, and my mom has been my greatest supporter and advocate. She has always believed in me and supported my decisions. She has been a friend to me when I haven't had anyone else, and she has always encouraged me in every aspect of my life. She has encouraged me to trust in the Lord and to make the choice to be happy. I'm so blessed to have such a wonderful mother. 

If you made it all the way through this post, thanks for reading it! It means so much to me when my family members or friends take the time to look up and research fibromyalgia. :) This is something I will be dealing with for the rest of my life, and I am so grateful when people take an effort to learn about my future.

I love you all! God bless!