Advocacy / Arthritis / Awareness / Journey to Wellness / Personal Stories / Uncategorized

Ashley’s Journey to Wellness – Entry #22 – Through Sickness and In Health

Journey  to Wellness – Entry #22 – Friday, August 13, 2010

It has been awhile since I have written. I have been busy with doctor’s appointments, traveling, enjoying my summer, and….getting engaged. You know, the norm 😉

Yes, this arthritic ring finger now has a dazzling ring on it. Simple yet sparkly, a lovely, beautiful classic solitaire diamond. I love it, and, even more, I love what it signifies – someone who will stand by my side through sickness and in health.

In our situation, isn’t that what we all strive for more than anything? Someone to be there for us when times are hard, when we need a friend and a constant supporter through chronic illness? My boyfriend – now fiancé – has been my biggest fan, greatest friend, and number one blessing. When dealing with the up and downs of living with the trials and tribulations of a life of sickness, pain, and sometimes unexpected challenges of autoimmune diseases, disabilities, and chronic conditions, it is an absolute joy and blessing to have a partner-in-crime to be your pillar of strength through the dark times. I am so thankful to have him by my side.

As silly as it sounds (but, I’m sure that my “RA peeps” can relate) – I am also so thankful that the ring fits! I was always worried that when my special moment came, that my engagement ring would not fit over my swollen knuckles! Thank goodness that I wasn’t having an RA flare on the day of my marriage proposal! He took my arthritis into account when figuring out what size ring to get, too! Luckily, it fits perfectly – and, in case of a flare, I must admit – I’d rather have it stuck ON my swollen finger, not being able to get it off, than not be able to get it on!  I want to wear it always, because it means so very much to me!

One thing that bugs me, though, is this: since when is having RA a sentence to have old-lady hands? Now, I’m sure that sounds just about as silly as my always whining about having to give up stilettos, but, we all have our downfalls and mine may be vanity. I’d never quite noticed that I’d had unattractive hands until I’d started taking pictures of my engagement ring. But, alas, I’ll be the first to admit that mine are pretty darn UGLY. I’m guessing that the years – 16 to be exact – of rheumatoid arthritis has not really done them any favors. The sagging skin at the knuckles is likely from the stretching when they swell. Then there’s the knobbiness of the knuckles themselves, and the crookedness of my fingers, and the general puffiness of my bottom knuckles. They are NOT what I’d call modelesque hands. I’d say that my hands look about 20 years older than I do, which, makes sense, given how they physically feel on any given day. This makes me reconsider the idea of that traditional “hands” wedding photo. Yeah…we might nix that whole thing. Unless I decide to, I don’t know, Botox my hands (which, they say IS good for arthritic joints – no lie, it was in Arthritis Today magazine) – I just don’t think that any more ring/hand photos are happening…unless the ring is without a hand or finger…lol.

In other news, I will admit that I have not been doing a very good job – at all – with my anti-GERD diet. I’m excellent with living gluten-free for my Celiac disease but for some reason I don’t do very well with my other dietary restrictions. I know that following the anti-GERD diet is very important because I already am going to have to be evaluated most likely for Barrett’s esophagus and that can be dangerous. I’m also not doing well with cutting back on sugar and fructose, and I’m going to have to be tested for fructose intolerance later this month. In addition to having to avoid soy, garlic, and a few other foods as much as possible, a part of me is beyond frustrated wondering WHAT “these people” (i.e. my doctors) want me to eat if I have to be gluten-free, soy-free, fructose-free, avoid all of my ‘allergen’ foods, cut back on dairy, AND stick to the anti-GERD diet? It is so intimidating, that, if I were to psycho-analyze myself, I think that, aside from the gluten part (which I NEVER EVER EVER cheat on) I may be inclined to want to childishly rebel, because it is SO HARD. I’ve met with countless dieticians but it is just really difficult to keep track of, not to mention, expensive, and VERY intimidating! I really want to know if any of you have tips for living with THIS MANY dietary restrictions? How do you do it? Especially in social settings, and on budget?  A part of me wants to see what all the tests *definitively* show before sacrificing so much more! Why do it if I don’t 100% have to, right? Or, do you guys think that is the wrong attitude?  Do any of you follow any of these diets? Do they help with your autoimmune conditions like rheumatoid arthritis? What about migraines, fibromyalgia, GERD, gastrointestinal problems, adrenal issues, immune dysfunction in general? Please, share your stories!

On another note….this is hard for me to share but I’ve been diagnosed with mild dysthymia and reactive anxiety, both in relation to my chronic health conditions. I do not want to go on medications but I have heard that some of the medications can treat both and can also manage chronic pain particularly the type that is associated with fibromyalgia and migraines. I do take 2 medications for my migraines but this week, for example, nothing at all has helped my migraines, and I’ve had severe headaches/migraines and brain fog every day. My fatigue has also been unbearable. I’ve been up and functioning – wedding planning, getting lots of other things done …but, it has been a huge challenge. I’ve been so unbelievably tired that it doesn’t feel humanly possible to even BE that tired…and I have the circles under my eyes to show it! I really don’t recall the last time that I have been this drained! My moods have been fine, but, I’ve been exhausted beyond belief! The fatigue is very hard to cope with. I know that everyone with RA has fatigue but it has been way worse than usual this week. Do any of you have depression or anxiety with your arthritis or autoimmune conditions? Do any of you have methods for coping with fatigue?

One thing I’m going to try to do now that my knee is slightly better is to exercise more. What is your favorite type of exercise? I am going to try to ease back in with just walking and yoga before hitting the gym full force. I’d like to get back at it with cardio and weights within a couple of months since I am having a beach wedding next July! But, we’ll see! It is really hard for me to exercise like I’d wish to with my knee needing replaced, my neck, and my RA being as unpredictable as it is! I’m determined to make it work, though! After all, exercise IS the best medicine! Do you guys have any advice? I start biofeedback next week, and am looking forward to that, as well.

I’d love to hear your thoughts, stories, and feedback … so please, leave a comment!

Thanks for reading, talk to you soon!

PS: If you went to the JA Conference, I really want to hear how it was! I hope to attend next year! I didn’t go this time, because that weekend, I was in Florida getting engaged 🙂

Stay Well,

Ashley Boynes

One thought on “Ashley’s Journey to Wellness – Entry #22 – Through Sickness and In Health

  1. I definitely don’t have as many dietary restrictions as you! That must be so tough and frustrating, to say the least! I have lots of food allergies, as well as developed autoimmune pancreaitis in the last year which forced me on a no to low fat diet. I find it so difficult to go out to eat with friends and family. Although, thankfully more and more places are starting to provide a ‘healthy’ menu. yay! I completely see what you are saying…why give more up if you aren’t sure you need to! Thanks for your blogs, i wouldn’t wish arthritis on anyone…but, it is helpful to know I am not alone!

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