Eight Pills and Counting..

8:49 AM on beautiful, sunny, warm Thursday in May and feeling great!

I waited to write on the first week or so for the 8 pill taper just because I know that sometimes if I miss my pills during the week, I really won't start to feel the pain till that Friday perhaps.  I didn't want to jump the gun and write about how I feel great unless I knew that my body isn't trying to slow play me and I really do feel great. But I do! I mean, I feel no different than the 10 pills I was taking.

Last Monday night I actually emailed my doctor in the morning to make sure I should take 8 in one shot.  He got back to me (I thank god for a doctor who answers his OWN emails - this is NOT the norm) and he said take all 8 on Tuesday.  Now its my SECOND week, again I took 8 pills two days ago and I feel good.  I mean a little tightness on my left wrist but that's baby pain compared.  So all in all the tapering is going good.  I feel now it may not really get "rough" till I am in possibly lower numbers like 4-2 tablets left.  I assume next week I will either go for blood or go on to 6 pills since I am feeling okay.  I will reach out to the doctor next week and see what the next steps are.  I also do hope that the prenatal pill I am taking gives me a little boost as well. Not sure if you or whomever you know is on Methotrexate and experiences hair loss or nail weakness but I do and I truly think I am losing less hair lately.  Perhaps the prenatal is helping me out there.  I always took a daily folic acid but maybe the extra bit in the prenatal vitamin is helping too.

I must say, I am grateful that I began this during the summer months.  I do feel like the weather helps - not even so much because the rain or dampness causes inflammation but more so because the nicer weather puts me in a better mood.  Spring is my favorite season and best of all, its BBQ time.  That means less stress on what to cook, less cleaning, and less work for me altogether since he will be maintaining the grill. I am sure the fatigue will be a bit worse by June/July and it will be nice to just be in charge of the side dishes!

As much as I like to keep this blog positive I do want to keep this blog real.  Yes I am trying my best to keep it optimistic. I know I am going to be okay because I have to be okay but I do get upset. I do cry. I am frustrated at times.  Last night I had a 10 minute mini crying session of why things are hard for me.  Or rather, why I feel nothing is ever "easy" for me.  But 10 minutes is all I will really give myself to wallow in self pity.  Yes, for me a lot of various things in my life haven't worked out as I had hoped and planned. Yes, I don't have the average journey of another woman who can get pregnant easily but I am not alone.  Unfortunately there are a lot of women who have to plan pregnancy as oppose to just "trying".  And that's okay.  I have to remember with whatever issues I have, someone else out there is much worse and I am lucky and blessed in many other ways.  There will be times you will lose sight of that and I hope that you have the strength and the strength of loved ones around you to guide you back to seeing the brighter side of things. Nothing is forever and life is made up of peaks and valleys and we all get through it, one day at a time.

Until next week!
xoxo

Time to Taper

Well this blog is late, but better late than never, right!?  I feel like most people who run late (which is commonly me) say that to make themselves feel better, meaning more or less like "bitch I could have not come at all".  haha BUT I do have good reasoning behind it so let me jump right into what has been going on in my neck of the woods.

So Easter came and went and I decided to cook and bake and all that good stuff and there went my fingers.  They were completely blown up more than I have ever seen before to the point where I couldn't make a fist or wear my rings.  And it just went to shit from there honestly. Joint pain on another level, had to take off of work, and then the side of my face started to swell and throb.  That I believe is the Sjogren's coming out to play.  So all in all I had a bout of a mini flare. I could have called the doctor and did a small round of steroids but I am a trooper (or I am trying to be) and the less of the roids the better. I got through it and then I had to fly out to San Diego for a week for work. Thankfully no flaring there and I was able to get through a really good work week with just the regular fatigue.

Now I am home and had my second meeting with my doctor today who was able to go through my blood work with me in person. Today he said after looking through it, I really lean more towards Lupus than anything else. Apparently the CCP IgG test came back normal and for someone who has Rheumatoid Arthritis, that level is usually positive.  However all Lupus tests came back positive and with high numbers, which more or less means either I still have MCTD leaning more towards Lupus or just full blown Lupus.  WHO THE HELL KNOWS. Regardless, he said it doesn't look bad, we already know that there's autoimmune issues within me - lets figure out what the steps are to get off the methotrexate.

Now the last doctor I had was having me go cold turkey - just STOP the medication and lets see. Which after reading, this may work for some people though not the recommended way. This new doctor is having me taper.  I usually take 10 tablets a week (spread between two days), which is the highest amount anyone can take for metho. So next week we go to 8 tablets. I'll do that for some time and then take blood work.  More or less I will be tapering and getting blood work and tapering and getting blood work.. and keep doing this until I am completely off.  He also gave me a steroid script just in case I start to flare but we are crossing our fingers and hoping for the best that I will never have to use it.

Note: the methotrexate comes out of the body quickly maybe like 3-4 weeks he said.. the reason you wait 3-6 months is for you to develop healthy eggs without any trace of the medication. Good to know. Makes sense.  I wouldn't want to even remotely try till I am back from my honeymoon which is in November and make sure I don't get the Zika. Then we can hopefully have some fun trying for a mini me baby.

I also showed him my knee which I feel has been acting up here and there and now has been sort of clicking and you know what he told me? I need to strengthen my knees, try some squats.  Like TELL ME SOMETHING I DON'T KNOW.  My ass has been asking for that for years. Pshhh...

So on the to do list for next week? 8 pills, and the gym.  😩  In all seriousness, I do need to up the yoga and stuff now that I am tapering.  I have been using an acupressure mat that my girlfriend got me and I lay it on the floor and lay down on it for like 30 minutes.  It helps.  I also started to sleep on a heating pad which has more or less changed my life.  Heat therapy = THE BEST. At least for me it is.  Don't knock it till ya try it.

I will keep writing weekly now.. let the tapering begin. yey!

The First Tuesday of April Has Arrived

If you want to make God laugh, tell him about your plans.

- Woody Allen                                                                      

So as you may have guessed there has been a wrench thrown in my plans for coming off the methotrexate.  Lots changed - one being that I decided to change my rheumatologist.  I have been desperate to find a doctor that is smart, has a great bedside manner, is somewhat local, takes my insurance and will call me if I reach out for an emergency.  Am I asking for too much? Possibly because I swear it is not an easy find.  My previous doctor I did like however after two years the man just started to get too many strikes.  At this point I am too scared to use to him at a crucial time like this.  So with that, I gathered up all my blood work (Make sure you always get copies of all your blood work. This way should you need to change doctors one day, the new doctor will get a better feeling of you as a patient by reviewing your labs) and met my new doctor yesterday.  He seems good, first impression went well, and his secretary seemed super nice (which is ALWAYS a plus).  

Second thing to change was work plans. At the end of this month I have a week long work trip across the country for a trade show. It is a lot of walking around, meetings, late dinners.. it's A LOT, even for a healthy person. 

Third, the weather in NY last week was HORRIBLE. Depressing rain all day, cold and windy. I don't know about you but for me, the weather always throws my body for a loop.  I was limping a bit last week - one ankle was acting up.  I even took a day off to stay home and rest. Thankful to be able to do my work in my bed, off my laptop! 

And last but not least: Unforeseeable STRESS.  Stress is a very common trigger for a flare up, so right now just is not the time. I am actually going to Yoga tonight, some meditation, stretching and deep breathing helps eliminate my pain and just resets the mind for the better.  For me, it works.  I'm no yogi by any means but I for sure would love to be. 

All in all - all signs point to delaying everything at least a month.  Which frankly annoys me because I am eager to get this ball rolling!! But mentally I am telling myself "Jacki, just take your time, do it right girl, you'll get off the meds but if you rush it - YOU WILL FLARE." Flaring scares the sh!t out of me because hospital stays are obviously the worst and I have had my fair share. All I have to do is think about being in that ugly blue gown and not being able to shower and I am like OKAY, whatever I gotta do, I WILL DO just to avoid the damn hospital.  Luckily my fiance gets it - he is super supportive and if we can try for a baby tomorrow, great, if not, its totally fine.  No pressure, no disappointment, and completely supportive (thank you for that Fluffy).

So back to the new doctor - who after looking me over and seeing my extensive lab packet, ALSO believes I have MCTD.  Althoughhhhhhh he did say I lean more towards Lupus.  FYI I tell everyone I have RA because I feel like people recognize the term RA. RA? Rheumatoid Arthritis?.. Ah Arthritis, her body aches, okay, got it.  Which is really the truth, the real problem I have everyday is my body aches, like more often than not and I am really tired, like a lot.  It's funny, he asked me what is it that I feel? And truthfully - I know I have pain - but after you have this ongoing pain for so long, you live with it.  It becomes your new norm. The fatigue? I know it's bad, but I AM ALWAYS TIRED so really I don't have a normal scale of someone who's like I dunno, average tired.  I just know, no matter how much sleep I get, I'm still tired.  Side note: he did tell me that I should lower the Plaquenil I take to one pill a day instead of two.  Apparently new studies show that too much Plaquenil aint the best.  Any who - new blood work will be taken tonight.. new numbers should be in by Friday so here's hoping for some stable news. I will make sure to write sometime next week.

Another mention - this doctor did tell me that Sulfasalazine and Plaquenil are a-okay for taking during conceiving period.  Which is in compliance with my previous doctor AS WELL AS my gynecologist. He did say that prednisone, should I need it, is okay to take as well. Gyno and last Rheumo told me the same however mehhhhhhhh- I know if I need it - I'll take it but I'm going to hope for the best and positive thinking = positive results. Ever read the book The Secret? There has to be some truth in that. #ASKBELIEVERECEIVE 

Speak to ya'll when the new labs are in.. fingers crossed! 

The Calm Before The Storm

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 😊