Welcome
to MY FIRST BLOG! Eek!
I
suppose I should start from the beginning, explain a bit of when my journey
with autoimmune issues began and the reason I am typing to you today. First, my
name is Jacki and you should know that my autoimmune diagnosis currently is MCTD: Mixed
Connective Tissue Disease. To people that aren't familiar with MCTD - I say its
a "shmorgasboard of autoimmune diseases". I have a little bit
of Rheumatoid Arthritis, Lupus, Raynaud's Disease, Sjogrens Syndrome, and
possibly Hashimoto's thyroiditis (wow that sounds like a lot when I am typing
it out which has been a first). I say the word "currently" since
anyone who is familiar with being diagnosed with an autoimmune disease - you
can one day see a new physician with a whole new outlook and be told that you
actually "don't have that,
it seems to me you have this".
I have heard this from so many other people diagnosed with various auto
immune diseases (including experiencing it myself). Unfortunately, this isn't
the fault of the physicians, this is just the crazy world of Autoimmunity - it
remains a question mark and the medications always change or the dosage does,
and we just have to stick with it and try new things till something works.
We are warriors,
no matter if you have celiac or RA or vasculitis, it isn't easy having any of
them but we get through it day by day. And don't get me wrong- everyone's
pain is different and on different levels but in my book, pain is pain. None of
this is fair but like I always say "it is what it is, I'll get past it and
I'll always be okay". I hope you know that too :)
I was
first diagnosed with Auto Immune Pancreatitis at the age of 26. I had been
having severe stomach pains constantly (which doctors told me was acid reflux),
eventually my urine had turned way darker than normal and I was
rushed to the hospital. Two hospitals later, twenty pounds lighter (and 1
gallbladder less for that matter), I was put on prednisone for 3 months and
feeling great. Six months after the steroids ended, my joints started to ache,
my hands and feet would go numb and tingle in the cold, and eventually I
decided to see a Rheumatologist. Thus begins what is now going on 7 years of
several different medications.
At the
moment I am now 31 years old, and about to be married. I am currently
taking Methotrexate, Plaquenil, Sulfasalazine, Folic Acid, and then
there's the occasional Naproxen and Tramadol when needed. And here is where my
story unfolds.. we'd like to begin trying for a baby shortly after we are
married and the Methotrexate has to be stopped 6 months prior. I'd have
to eliminate any trace of the medication as it can be dangerous for the baby
with serious side effects like blood disorders and gastrointestinal problems.
So
okay, no metho - 6 months. I can do this. I mean yes, I have been on
methotrexate since almost the entire time I have been sick, lets say 6 years.
Plaquenil and Sulfasalazine are still okay to be on throughout the entire
pregnancy, which has been tested and many women have had healthy, beautiful
babies for decades. But now back to coming off the metho.. I take my
methotrexate - and more or less RELY on it weekly. My body knows when the week
is up and my dose is needed. So.. how do these women do it? With
the internet these days - I assumed there was a lot of women discussing
RA/Lupus and their path to conceive.
Mmmm..
Unfortunately not. I found some, but really, there are a TON of sites telling
you how GREAT pregnancy could be when you have autoimmune. Some women go
into remission during their pregnancy. Some women love to get
pregnant because they aren't flaring during the pregnancy at all. Which,
don't get me wrong - that sounds amazing.
Some women flare after - but then there are some women who go into years of
remission after giving birth. GREAT. Please Dear God, I hope that's me. Matter of fact, I
hope that's YOU too! But what about what it took to GET to there? What
happened in the months prior to seeing "You're Pregnant" on the
little pee stick? But how did that go? Was it as bad as I imagine? Did
you go on steroids during the "off-medication" phase? What
helped you get through it? Did you miscarry? Were you able to get up and
go to work everyday? Did you do yoga? What about your diet? Like.. what.
did. you. do. to. survive? LOL
So
okay, here goes. I am going to try to blog through it all, maybe this blog will
help you get a better idea of how someone out there did it. Or maybe you
are a reader who has a loved one going through this exact situation. I
figure if I can help anyone,
whomever they are, whatever their situation may be, then this was worth it.
And hey, I think maybe it could even help me to cope too! So today is
March 9th, 2017. I have three more weeks of being on Methotrexate and
then will be going cold turkey the first Tuesday in April. Wish me luck
you guys.. this new adventure begins soon 😊
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