An “Arthritis Ashley” Update: Marriage, Lupus, and Loving Life! – Ashley’s Health Diary – Entry #29 – by Ashley Boynes-Shuck

July 15, 2011

 It has been a while since I’ve written in my online “Health Diary” and updated you all on my health progress and how I’ve been, and so I figured that I am well overdue! First off, I’m now a Mrs!  I got married to the love of my life, Mike, on the beach at the end of June. (I have shared a photo, to your left!)  I guess that, “in sickness and in health” thing means even more in our case, huh!! ;)

Anyway…some “health updates” from me…

As far as the Chiari Malformation goes; I’ve been doing well since my February 2nd brain and neck surgery. I still cannot believe that I went through that and can add, “brain surgery survivor” to my list of things that I have overcome, but I thank my lucky stars each and every day that, after years of searching, I FINALLY got a diagnosis (better late than never, I suppose?) and that the surgery went smoothly. I still get headaches now and then, but they aren’t the same, excruciating and debilitating kind that I’d gotten prior to the surgery. They seem to be associated with my being on a certain medication, or possibly allergy-related, I’m not sure. They aren’t pleasant, but I am grateful that they aren’t the same “kind” so I’m not really alarmed. Since the brain surgery, my daily morning nausea is gone, the chronic tinnitus is nowhere near as bad, and the nonstop headaches have fell to the wayside. I still get neck pain but it is minimal compared to what it was. The tingling and numbness I had experienced is all but gone. I have also been able to sleep better, eye pain has subsided, the brain fog is much better, and so is the dizziness and lightheadedness. While I cannot believe that so many doctors missed the Chiari on the MRIs, especially given all of my textbook symptoms, I am relieved that they eventually caught it and that, “knock on wood,” I seem to be doing much better. In August, I am due to go back for another Brain MRI to “check up” on the status. Fingers crossed!

My Rheumatoid Arthritis, however, has been what you could call, “out of whack.” A steroid, which used to be the only thing that would help, is not really doing its job anymore, even on a double-dose. Since it was the “go-to” for flares, and isn’t working even after doubling, it is a little discouraging. My other medications do not seem to be doing their jobs, and seem to be just giving me side effects. I have tried so many RA meds over the last 15 years or so that my options are becoming limited. For about 2 months now, I’ve basically been in a nonstop flare. It just travels from joint to joint. So, it’ll reside in my hands for a couple of days, then I’ll be good for a day or two, then it moves to my knee, ankle, hip, jaw, finger, whatever.  It has yet to just “go away” and leave me alone. In the past, I have actually went a couple months without a flare, so to have one that seemingly won’t go away is frustrating. They’ve been more painful as of late, too. I am not sure why. I used to never, ever, take pain medications except post-surgery. I have had to rely on them a few times in the past couple of months just for the pain of RA flares, and if you know me, that says a lot. What says even more is that they  barely help. So, I’ve been working with my regular, long-time rheumatologist AND some rheum specialists at one of the local hospitals to figure out what is going on.

I got a ton of lab work and X-Rays and one of the rheumatologists said the oddest thing to me. He said that by the looks of everything – my case as a whole (imaging, labs, notes and records, etc.) that it seems as though I do not have classic Juvenile Arthritis (I was diagnosed around age 10) but that, I got the “adult-form” of RA as a child. This makes no sense to me, but, I suppose that is possible. Additionally, I have some other factors that are not related to RA….

…which brings me to my next point. The doctors have diagnosed me with a form of Lupus. They are not saying yet that it is SLE, but it also doesn’t “look like” drug-induced lupus. They are calling it more of a Lupus Overlap Syndrome with the RA. They are taking me off of one of my RA meds “in case” it is an odd form of DIL – better safe than sorry. I will try a new RA drug for 6 months. If I remain status quo or worsen, they will switch me to a Lupus infusion and see how that goes. Dermatamyositis was mentioned also and then forgotten, I think, so was mixed connective tissue disease and autoimmune overlap syndrome (which, I’d say I have obviously with RA, Celiac Disease, autoimmune iritis, and now potentially a Lupus syndrome.)  Things have been odd. Not only were many of my blood tests very elevated/high and testing positive for lupus and RA (which we already knew I had, obviously) but also I have been having insane symptoms. Egg-shaped bulges on my forearm, swelling in my face that looks like not hives but mumps, muscle and tissue inflammation causing these types of lumps all over by body – my temple, my upper arm near the shoulder, etc. When it happens, it does not seem to be on the outer surface of the skin, and it usually isn’t on a joint. It is a bulge that is definitely tissue or muscle — deeper than just the skin. Cellulitis had been ruled out. I have been getting “normal” hives, too, but that is really neither here nor there. In addition to these things, I have been getting painful red nodules and skin hardening on my finger joints. Joints that usually are not involved with JRA which was another red flag to them. They are calling them, erythematous nodules or something similar. I got one biopsied and it showed a lupus pattern, I got another biopsied and it didn’t. So, everything is a mystery, as always! As many of my doctors have said, “I’m an anomaly.” (Though, I’d rather be an anomaly for better reasons, though! Haha. More along the lines of being some kind of prodigy or in the  way of “getting a star on the Hollywood Walk of Fame” sense or  for curing cancer or something lol!)  Anyway…my anxiety has been fairly controlled, even without having to rely on meds – yay! (I take enough of those!) –  but my fatigue has been really difficult as of late, that is one thing that bugs me more than anything else. I hate feeling drained and having no energy, and it’s really difficult to find anything that helps with fatigue. It sometimes is as bad as the pain! Unless you have an autoimmune condition with bad fatigue and have experienced it firsthand, there is no way that you could imagine it – “tired” does not BEGIN to describe it, as my fellow “spoonies” and RA’ers can attest to!

However, I have been remaining positive and counting all of the blessings in my life – my ability to write, my opportunities to help others, my new marriage, my awesome friends, amazing family, my pets, my home, and, life in general. Nothing is so bad that we can’t get through it; and someone always has it worse. So, I have made it my mission to not allow my conditions steal my life from me. I focus on what I can do, not what I can’t. I make room for a social life even if I’m not feeling well. I make myself get out “in the world” — and trust me, sometimes that takes a lot of forcing and coercing in my inner dialogue with myself. I do allow myself time to rest and have what I call, “lazy days” but, for me, I’d rather fight through the pain than “waste” life. After all, it is such a precious gift, and we only get one — as I say often, this isn’t a dress rehearsal! I have found that staying busy, trying to be active when I can, helping others (something I am so passionate about), and through focusing on all the good, I have been able to more healthily cope with my conditions. One of my biggest wishes is for you all to be able to do the same! Some of the stories I read online break my heart – - I know how many of you are suffering, and I wish that I had a magic wand to take all of our pain and sickness away!! If I could, I would.

Until then, though, I wish you all good health, good cheer, and send lots of smiles, hugs, and positive vibes your way! Together, we can beat this. Never stop fighting, and don’t let your conditions “win!”

I will leave you with a link to a blog post that I wrote on this topic – not backing down & fighting against arthritis – for the Arthritis Foundation, “Let’s Move Together” blog, HERE.

Another new one to inspired you is “The Dance of Life,” a guest post on Happy Feet, here.

Also, a little piece of inspiration for you all –> ‎”To rest is to rust” – Keep Moving! Let’s Move Together towards better health and optimal wellness – Arthritis is Unacceptable!

I’d love to read your feedback ~~ so please, feel free to leave a comment below!  I would love to hear any updates that YOU have, and how you have been feeling!!! :)  Thank You!

Stay well,

Ashley Boynes-Shuck

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2 thoughts on “An “Arthritis Ashley” Update: Marriage, Lupus, and Loving Life! – Ashley’s Health Diary – Entry #29 – by Ashley Boynes-Shuck

  1. as you’d know, i live in south america, and it’s kind of dificult to send a donation via e mail or something like that, i’ll try to find out a way to do so.

  2. Hi I live in Ireland I have RA for the last 6 yrs My mother has had it since I was 2 and she has itshe severe went blind with it last yr and after being her carer for 10 yrs we had to make the decision to put her into full time proper care so for the 1st time in my life really I don’t have to care for my mum Im doing a couple of courses at the mo have joined a keep fit class which Im actually able to do (bar the running) which makes me feel normal like other women my age (34) I have it mostly in my knees and legs had an op on each knee to stop the fluid from coming into my knee but it didn’t work so the ruematologist is on abt me getting a radio thearpy injection into my knees so Im thinking abt tht.. Im in the process of trying to get an Arthritis Ire branch up and running in my local area as I have 30 yrs experience of RA (unfortunately) when I got it I knew all abt it but when my mum got it she didn’t have a clue so I want to do this in honour of her I don’t want all her pain and suffering over the yrs to be for nought ..hope you get some relief soon, una farren donegal ireland

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