Tuesday, December 22, 2015

12/22/15- The R.A

This post is going to be a difficult one for me:  1) I could rattle on and on about R.A. and other autoimmune diseases, so apologies if it's such a long post; 2) people, including myself, forget just how devastating these diseases can be, I mean it's in the same category as cancer and HIV (luckily I don't have severe R.A., just moderate, and the medicine I'm on and the rest I plan to get help, but as one patient put it, wipe out days make you absolutely unproductive); and 3) the first year took such a big chuck of me, it eat my soul, and even though I am bigger wimp than some of the other patients (there are other patients who are so much more inspiring, like they never complain and still go kick butt even on wipe out days), I no longer let the disease be who I am.  I have my soul back.

Oh, and if you are a patient like me, who complains about it and just lays around the house some days, I want you to know, that is okay.  We don't have to all be the Taking Care of Business patients. If you are the TCB patient, keep it up dude, you rock!  (How pleasing am I trying to be right now, ha!). :)  So here it goes, here's part of my R.A. story (because seriously I have so much more to say about it, but this is blog post, not  a novel).

In 2007, I was diagnosed with Rheumatoid Arthritis.  It took a whole year to figure out why I felt so fatigued, achy and over all malaise. It was one of the sharky-est years of my life-- in and out of doctor's offices, so many tests (blood, X-rays, CAT scan, MRI), and the vicious cycle that feeling ill with no answers as to why leads you into a depression, which then makes you feel ill and you repeat depression/ill all over again.

I felt that I was losing my mind; that I was a hypochondriac. I will tell you that most of the doctors I meet through this experience did not reassure me in feelings of insecurity and vulnerability, and they made me feel even more like a hypochondriac (like aren't doctors supposed to care about you and not belittle you?).  One even suggested it was just irritable bowel syndrome, and that I just needed to chill out.

I actually had mono as well that year (in addition to the R.A.), which for me meant stomach flu type symptoms.  I'm glad I keep listening to my body and keep pushing for answers (because mono and irritable bowel syndrome are totally the same thing, not).  I'm an Aries, so I can be stubborn, if you believe in that astrology stuff, and for once my stubbornness/refusal to take that I was just crazy/stressed/making it up resulted in answers.  I can only image the patients that go undiagnosed/under diagnosed because their too timid or the doctor won't listen.

So anyway, I got lucky that I randomly ended up at a GP (there was a self prescribed MRI involved and the MRI place asking for my doctor's name, which I didn't have since I was the one recommending the MRI, and the place just assigned this GP to me) who finally tested me for a variety of things, including mono and R.A.  The mono test came back positive, as did a high R.A. factor and high CRP count.  He sent me to a Rheumatologist, who then put on Plaquenil, and eventually my CRP number went low again (and the mono inactive).

In 2014, I became pregnant, and it also helped me go into a remission.  It was the healthiest I felt.  No sinus infections during that time (I always get 2-3 each year), no achy joints, no fatigue. Sure, sometimes I was tired from caring a baby around and had bad morning sickness the first trimester, but by the second and third, I actually felt energetic during the days. I started taking walks at 7 in the morning with dog, which back in 2007, I was lucky if I got out of bed by 9 am.  I was in the office more and every weekend helping my husband with baby prepping activities.  It was great.  I was no longer having wipe out days, yay!

Then early this year, 2015, the achiness started again.  I had my six month check up with the Rheumatologist in late January, and no surprise to me, my CRP number had gone high again.  I had to start taking Plaquenil again (I quit it during pregnancy).

Yay Pills!  All the meds and supplements I take to stay healthy

And this year has not been kind to my body:  a severe sinus infection that took 3 weeks and antibotics to get over, followed by a loss of smell (such a blessing and a curse! Couldn't smell dirty diapers, but knock on wood that there wasn't a fire/smoke in the home that I couldn't smell), hand/foot/mouth disease, followed by temporary myelopathy (lost some feeling in my legs), dry mouth/cracked lips, dry eyes, another sinus cold, adrenal problems, and fatigue throughout the year (boo wipe out days were back).  The R.A. has flared again and this time also with a possible secondary autoimmune disease, Sjoren's (possible explanation of my dry lips and dry eyes).

Two things that are delaying my next remission.  The first is a lack of a good night's sleep (a one year old waking up in the middle of the night is not good for the immune system, FYI, in case you didn't know).  The second is stress.  Lack of sleep and stress are some of the things autoimmune patients are supposed to avoid, ha.

So I've come up with a plan to reduce my stress and get more rest: reduce how many hours a week I work (and to also work on this blog, as they say to reduce stress, do something you want to do, not that you have to do).  I plan to go down to 24 hours/week at my work for the New Year.  I just need to get approval.  I will let you know how that goes.  I'll also share with you my road to remission (road to remission, possible band and/or album name). My primary care doctor has given me some new meds to try, so hopefully that will help in addition to the more rest/less stress/less work plan.

I do hope to one day tell you that all my blood work looks great and that I'm feeling great physically (mentally, I'm feeling quite well, don't want you to worry, my soul is still intact :-)).  In the mean time, you all take care of yourselves.  Take care!  (I'm so bad at ending these blogs, will work on that).

Oh, I realized I didn't give too much explanation about what R.A. or Sjoren's is; just how sharky I feel because of these diseases.  For more information about the diseases, peruse the following links:



And Bev really explains the fatigue thing well (it's my number one problem with the disease, and I know other autoimmune patients who feel this way too; thanks immune systems for thinking our bodies are a foreign objects!):


No comments:

Post a Comment