November 17, 2010

Well, as always, a lot has happened since I last journaled in this, my online “health diary!”

Life as I know it is always changing, always growing, always evolving – a roller coaster of ups and downs, goods and bads! But, isn’t that what life is – a wild ride that we’re meant to enjoy AND to learn from?

So here’s some things – medically speaking – that I’ve learned in the past month or so. Well, for one, I don’t have Sjogren’s. I got the lip biopsy (which was a little lot more painful than they’d let on, I’m not gonna lie!) and it was negative. However, I still have some of the symptoms of Sjogren’s which they are treating separately with eye drops and what have you. So, that was that. I also discovered a lump on my skull that I got checked out. It is suspected to be a limpoma (benign tumor) or a pilar cyst right under the hair follicle and will eventually need removed to be biopsied. Initially, I had thought it may be a bone spur or nodule from the OA or RA (yes, that can occur even on your scalp!) but as it is mobile, it is likely one of the above-mentioned abnormalities. (More on that, later.)

I got a series of 3 hyaluronic acid injections in my right knee. Also called, “chicken fat” injections, they weren’t that painful and they take 4-6 weeks to “kick in.” I got my last one 2 weeks ago or so, and so now it is just a matter of time before we see if they work or not! In the past I’ve done the cortisone shots (to no avail) and 2 surgeries (also seemingly to no avail) so this is pretty much the last-ditch effort before a total joint replacement….just buying me some time! 🙂

I also had an extensive evaluation at the neuro-opthamologist and found that in addition to the autoimmune iritis and bull’s eye maculopathy, that I also have retinal thinning and scleritis. The retinal thinning is apparently from Plaquinil use in the past (used to treat my Juvenile Arthritis – the same thing that caused the maculopathy) and is a nonissue. The scleritis, for now, is being treated with the same steroid eye drops that are being used to treat the iritis, and hopefully I will not need an oral course of Prednisone because I am supposed to be limiting steroid intake due to a history of secondary adrenal insufficiency.

When I was at the neuro-opthamologist and explaining the types of head pain that I have in addition to my migraines. I was wondering if it had anything to do with my eye pain or the osteoarthritis in my neck, and she decided to browse through some old brain MRIs from about a year and a half ago. In one slide, she noticed that my brain sat low on my cerebellar tonsils and suggested that I have another MRI done to be evaluated for something called Chiari Malformation. According to the Mayo Clinic, “Chiari malformation is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses. The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood.”

I met with my neurologist who ordered the MRI, and I got the call on Tuesday that I do, indeed, have symptomatic Chiari Malformation of the brain. It is likely Type I and in many cases when symptomatic requires surgery. I meet with the neurosurgeon tomorrow. Now, in my case, it will be difficult to determine whether or not my many symptoms are actually caused from the Chiari or from my other conditions (Rheumatoid Arthritis, osteoarthritis, Celiac Disease, migraines, and so on.) However, if some of my symptoms ARE caused by the Chiari malformation and could be corrected by surgery, this could be the answer to my prayers! To have migraines, neck pain, severe shooting pains in my head, nonstop tinnitus, brain fog, daily nausea, and other “random” symptoms eliminated or even greatly diminished would be a dream come true and could substantially improve my quality of life!  So as scary as the surgery would be, it COULD be worth it. I guess it is, as usual, a “wait and see” situation, and tomorrow I will find out if the surgery will be done or not.

Today, I was supposed to have the pilar cyst/limpoma thing removed from my scalp but they decided to wait until I meet with the neurosurgeon tomorrow. They said that the Chiari surgery would be more important and we should wait and see when that would be done and figure out what the timing would be. I guess that makes sense – brain falling out of skull trumps cyst. (Ok, it isn’t funny, but you have to joke! A great Bill Cosby quote I read today: “Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.”)

I guess I’m just too smart and my brain’s too big to fit in my  petite lil’ head 😉 hehehe.

Anyway. Today I met with my rheumatologist for my every-3-months examination. I seem to be doing fairly well on the Remicade infusions combined with the Methotrexate, from a rheumatoid arthritis standpoint.  A couple months ago they had to increase the Remicade dose, though, and decrease Methotrexate. I was having bad side effects from the Methotrexate, and the Remicade wasn’t working well enough. I think they’ve found a good balance. The RA is most active in my right hip, right knee, clavicle, and right jaw. My osteoarthritis, or OA, has been worse than usual, though, in the past few months. It can be quite painful, though it is a different kind of pain from RA. My neck, back, and knee are especially bad with the osteo pain, and sometimes my hands and fingers, too.

The unfortunate part about my situation is that I absolutely cannot take any NSAIDs, which would typically be prescribed for OA pain or the stiffness factor from RA. I have GI issues from the unresolved Celiac Disease and reflux (bile reflux and acid reflux) issues and so my rheumatologist doesn’t want me taking any oral NSAIDs at all, even Vimovo. When I have bad RA flares, or my OA is acting up, I’m kind of stuck. I have terrible allergic reactions to strong meds like Vicodin or Codeine (I don’t know why – I itch all over!) and I am REALLY supposed to limit steroids – and I can’t take NSAIDs! It is quite frustrating – what’s a girl to do? Well, I’m trying Voltaren gel again. It’s an NSAID gel. I’ve used it and Pennsaid before. Neither totally impressed me, but, hey, it’s worth another try! I’ll attempt it on my knee and neck and see what happens! I also used BioFreeze which, for me, provides at least some temporary relief. I don’t know about you all but acupuncture and massage are nice quick-fixes too, as are hot baths and jacuzzis! So I am trying remedies like that to cope with pain. I ordered a BackSac and have been using it and/or pillows to support my lower back when sitting for long periods of time. It is important to have proper back support and also to get up and stretch/move around when we can.

I am also trying the RICE method: Rest, Ice, Compress, Elevate! (Except, as I’m a fan of “heat” I’m adding that in there, too!) What do you guys do to help cope with pain and/or stiffness? The stiffness really gets me as the weather gets colder  – – and in the mornings! My swelling and inflammation hasn’t been terrible lately, but my stiffness has. At my rheumy visit today, my range of motion was terrible. No offense to 80-year-0ld ladies out there – but I FELT like an 80-year-old lady – and I’m 27! What gives? I’ve been trying to exercise lately: treadmill, yoga, walking my pug. I’m getting proper rest, trying to eat right, taking my meds and vitamins.

Maybe it’s just the weather? I mean, it’s up and down, all over the map! Do changes in climate affect you guys at all?

I’m trying to just focus on the positives that – knock on wood – for the most part, my RA is fairly under control in most joints!!

Anyway – just a couple important things before I go! A theme that I want you to take with you through the rest of 2010 and beyond….the idea of being GRATEFUL in spite of your circumstances, no matter what they are! 🙂

As the Thanksgiving holiday approaches, I wanted to tell you about a project I started a little over a month ago! I began keeping a “Gratitude Journal!” I read about it in Natural Health Magazine and so each day, I write something down (or multiple things) that I am grateful for. Even on days where you’d think there’s NOTHING to be thankful for, there ALWAYS is! Now, I started a similar initiative a year ago, where I journaled the high and low of each day, plus one thing I was thankful for….but, I sadly got off track. So far, I’ve been doing pretty well with my, “Daily Grateful,” as I call it! Most days, I also post what I’m grateful for on my @ArthritisAshley Twitter account, tagging it #DailyGrateful and have even inspired some of my followers to do the same!  I didn’t know this when I started this project, but Arthritis Today Magazine even posted an article about gratitude journaling! Check it out, here. And isn’t Thanksgiving the perfect time of year to think about what you are grateful for? Go ahead, think about it! Consider leaving us a comment and share what YOU are grateful for today! 🙂

I am grateful for my wonderful family and fiance, my pets and my friends, my lovely home and my online support system, my ability to write, the life that I live, my faith, my country, and so much more! I’m grateful for little things like sunshine, enjoying a hot chai from Starbucks, my favorite slippers on a cold day, the sound of my parakeets chirping in the morning, kisses from my pug, getting cards in the mail from my friends, and I’m thankful for the opportunity to write and spread awareness about arthritis and other chronic illnesses, and touch the lives of you all, to help other people and for the ability to truly appreciate all of the awesome things that I have in my life! You know what I HATE? I hate when people “feel bad” for me because of my  health conditions. I feel bad for THEM – because it’s sad if anyone is so close-minded that they cannot see how truly blessed I am! I am so grateful for everything that I have. I focus on what I have – not what I don’t. I think about what I can do – not what I cannot.

Think about that. 🙂

Last but not least …

A charitable heart is a beautiful heart! Get in the giving spirit  a bit early this holiday season! Simply text the word ACTION to 27722 to donate $10 the Arthritis Foundation, Mid Atlantic Region. So easy! Help them reach $1 Million for Arthritis! Leave a comment and share the news, if you’ve decided to give! 🙂  Doing good deeds is important for a healthy soul which in turn leads to a healthier you! It’s all about Mind, Body, AND Spirit!

Thanks for reading, and enjoy the rest of your week!

Leave a comment! I’d love to hear about what you’re doing to combat OA pain, or what you’re doing to stay moving with RA! Or, have you dealt with Chiari before? How about any of the eye issues I’ve talked about? Please, share your story! Let’s talk!

Stay Well,

Ashley Boynes