Ashley’s Journey to Wellness – Entry #23 – Embracing Arthritis & Autoimmune Illness

Journey  to Wellness – Entry #23 – Friday, August 25, 2010

I hope that this entry finds you all well! I’m “hanging in there,” so to speak and enjoying these last couple of weeks of summer!

This has been a busy, productive, and lovely week! I found the wedding dress of my dreams, and plans are coming along smoothly. Last week was busy, too, with 4 doctor’s appointments, and a few tests.

I was tested for Autoimmune Inner Ear Disorder and Pernicious Anemia. My doctors also ran some sort of DNA test, tested my thyroid, blood sugar, liver and kidney functions, and so on. The DNA and APA test (antiparietal cell antibody test – which is testing for the pernicious anemia) are still outstanding. Luckily, I do not have AIED, and all of my other standard blood work was normal. (yay!) However, my latest audiogram did show mild hearing loss in the higher register. My ENT doctor believes that it is most likely genetic. However, with my history of Celiac disease and vitamin deficiencies due to absorption issues, she also acknowledged that there could be a chance that the hearing loss and resulting tinnitus could be from neuropathy (nerve damage) stemming from that. So, that diagnosis is (still) murky but, at last, at least a blood test has confirmed that it isn’t, in fact, Autoimmune Inner Ear Disorder – seemingly,  a possible step in the right direction :)

I have a history of low, “iffy”, and low-normal B12 levels (even with now-weekly B12 shots and supplements) and so my PCP is testing me for Pernicious Anemia especially with, again, my Celiac Disease and history of malabsorption, etc. While I’ve had “regular” (iron) anemia off and on, pernicious anemia is quite different and can be dangerous if left untreated. There are different tests for it other than the regular or “standard” B12 blood tests, and the one that he is running first is an APA blood test, or the antiparietal cell antibody test. It has been 10 days since the test was run, but, I am still awaiting these results.

Someone also suggested that I be evaluated for systemic candidiasis but this matter has been brought to the table before and no medical doctor will take it seriously, even though it can be a serious medical issue – which can exacerbate some of my OTHER ongoing issues and even cause some of the problems. So, I am going to see if any of my specialists are willing to test for it. I’m trying to be on the ball and stay on top of things to try and do all I can to get better!

In other “news,” (for lack of a better term) – during my larygnoscopy, it showed that my esophagus is still looking bad. I’m to stick to my medications and anti-GERD diet, which I’ve been trying to be better about. If  nothing changes, I will need to try stronger meds. If THEY don’t help, then my esophagus will be biopsied.

As far as my arthritis goes, I had a mild Rheumatoid Arthritis flare this week on Sunday and Monday coupled with Osteoarthritis symptoms, too, which was absolutely miserable. My left hip, right knee, back, and hands were out of control. Last week, I had some of the worst migraines I’ve faced in recent memory. (They were also incredibly long-lasting!) I’m looking into maybe increasing my migraine medications. I also want to see if there are any paid clinical trials for arthritis medications in my area. I may try Cymbalta now that it has now very recently been approved for pain management in addition to it possibly helping my anxiety. (No worries, this WAS something that my doctors had already suggested!)

But, I’ve taken this all in stride. There’s really no other option, right? I’ve been “embracing arthritis” – and the other ailments that I deal with on a chronic basis – as a part of who I am. It isn’t a side of defeat to “accept” them as a part of who I am – it just “is.” I am embracing this part of my character because they have, in a huge way, shaped who I have become.

This all has taught me a lot, too.

It has shed light on the fact that I just need to keep pushing forward. Yes, I have limitations. There are SIMPLY JUST THINGS I CANNOT DO. Sometimes, I get annoyed when people tell me, “oh, just go to the gym and do this or that, you’ll feel better!”   Sure, that might work for them. THEY are not ME. Every person’s body is different.  Also, it isn’t just about pain. Some people’s bodies just have more limitations than others’ bodies do. If it were just pain, I could handle it – but pain and physical ability are two totally different things. Yes, this illness come with frustrations like these. But, we have to learn to deal with these frustrations. I embrace the fact that my version of exercise consists of walking the dog, yoga, and, sometimes if I’m lucky, swimming.

I embrace and accept that I am a pain in the butt to go out to eat with because of my dietary restrictions. I embrace that all of my health problems are probably a lot for my friends and family to handle, and, I acknowledge, that to some people, my simply talking about them may seem like complaining, even when I’m just simply stating the facts.

I embrace that these things are a part of who I am.

The important thing, though, is that I LOVE who I am. My life is beautiful, perfect, lovely, blessed, and so, I wouldn’t change a thing….because, who knows, if I did – maybe I wouldn’t be where I am today. I don’t want to be sick, chronically ill, dealing with a life of pain and discomfort….but I’m on this path for a reason….if I were 100% healthy, would I be on this path? Would I be leading such an otherwise-charmed life? I’m not so certain that I would be, would you? Everyone’s life has ups and downs. My “downs” are medical/health related and ALL of the things (some of which you would never even think of) that stem from that circumstance. But, as hard as it has been, I’ve found a way to, somehow, oddly embrace this imperfection that exists within myself.

I think that you all should do the same! Yes, we live with a lot of fear and uncertainty! Yes, we live in pain and with sickness! Yes, it is a “lose-lose” situation sometimes when you have the battle of wanting to be a busy and productive person but you live with chronic illness and are running on limited resources physically and energy-wise. However, we need to embrace arthritis, embrace our conditions …. because if we don’t embrace ourselves, who else will?

Something to think about.

Stay positive, and stay well!

Stay Well,

Ashley Boynes

9 thoughts on “Ashley’s Journey to Wellness – Entry #23 – Embracing Arthritis & Autoimmune Illness

  1. Ashley, what a lovely post! I too believe that things happen for a reason. Every now & then, everybody needs a reminder to stay positive and to not spend mental energy “fighting it” and asking why. As you said, “it just is.” The best approach is to just accept what life hands you gracefully and move through it. Or try anyway! ;-)

  2. Nice of you to keep us up to date on the wedding progress. I just found out a few weeks ago my thyroid, went bad from RA. I didn’t realize that was one of the things that could go wrong, surpize it is. I begin meds in a week or so. I had to go see my primary care docotr. I am enjoying your blogs please keep it up. It helps me to feel better to know someone who has the same thing is moving on with life it gives hope to many.

  3. A good pleasant blog, that reveals a person that is at one with her life and now due to settle with the love of her life and live as one. Good Luck to you both and all the best for the future.

    This blog shows that we all suffer a knock to the self esteem as well as the physical side, and just proves that we can step over that hurdle (I say step as if we jump..OUCH!!!) and move on and be as happy as we can, when we can, its all in the support we recieve and the boosts to our morale.

    Keep up the good work Ashley, you are doing everyone proud and also giving a true and honest insight into these conditions.

  4. Ashley

    I always look forward to reading your blogs. Your experience is so helpful in understanding this illness. Take care and I pray that you will find solutions to the problems that you face.

  5. Hi Ashley,

    One other test your doctor should have ordered is the Intrinsic Factor Antibodes test. This test is conclusive for a diagnosis of pernicious anameia if you test postive for antibodies. Parietal Cells antibodies can be present in other diseases such as thyroidism and diabetes. Coeliac Disease increases the risk of developing pernicios anaemia (PA). Another test that is important is folate levels. Low B12 levels and low folate levels often go hand in hand and optimal supplies of both are required in order to regenerate new healthy red blood cells. When you get time, have a read of the PAS forum found at http://www.pernicious-anaemia-society.org.uk

    Low B12 and low folate levels can cause headaches. My daughter has PA and one of the earliest symptoms for her when her B12 level goes low is a migraine.

    I admire your very positive outlook in dealing with your illness. That goes a long way towards recovery.

  6. “My life is beautiful, perfect, lovely, blessed, and so, I wouldn’t change a thing….because, who knows, if I did – maybe I wouldn’t be where I am today.”
    …well said. Keep that frame of mind. You have everything going for you. I feel the same way. Just got to keep working hard each day and pushing forward. Going to get these knees checked out again next week. They are doing some test. Wish me luck!

  7. Wow Ashley, Congratulations on the engagement. It truly is a blessing to find someone who seems so perfect. Ever since I began reading your blogs on the other site, I have become increasingly blown away by your candor and inspiration. Please keep up the great work and know that you have a follower for life. As always, God Bless!

  8. Your blogs are fantastic and although i do not have any of your symptoms i enjoy reading about your positive attitude which to me is the main ingredient for a satisfying life.. I still feel from reading all of your blogs that your recovery in full is soon to come.. God bless

  9. Pingback: World Arthritis Day, Online Support, and My Wild Ride to Wellness! – Arthritis Ashley’s Health Diary – Entry #24 « Wellness With a Side of Life, Please

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