Tuesday, October 16, 2012

The Mother of all Flares!

2/25/2013. an update to this post is listed under..another bump in the road about where my .."happy lil ending" bubble got burst!!


So, I've had RA for a very long time now and I thought I had been through the worst.  I was WRONG!  Back in 2008 I had finished school and gotten my diploma in Medical Billing & Coding and got my certification.  I was so proud of myself for going back to school (despite how hard it was) and finishing and even getting a job in that field before i even finished graduating.  Things were looking good. 
When I was in school I was in remission with my RA (which was heavenly) because I wasn't working.  I was a stay at home mom for a few years as I wanted to enjoy my kids while they were still little and my husband had gotten a promotion that actually allowed me to do so for awhile.  Yeap, things were going great!
It wasn't till I started back to work full time that I would soon go into only what i can describe as the "MOTHER OF ALL FLARE UPS"!!!  I rather enjoyed the remission that i had been in.  It tricks your mind into thinking you are all better that RA has mysteriously disappeared and you are "normal" again.  Quickly after starting back to work I was reminded, with avengance, that I was NOT normal and I was NOT all better.
I was 30yrs old at the time going back to work full time with my own little desk and area for my new job with my new degree. I was so proud of myself for setting a goal and achieving it.   I've had pain in the past from RA.  It all started coming back on me right after I started work full time.  The pain, the swelling, the stiffness.  It was getting worse and worse by the day.  Man I can't believe I let my brain and my body trick me into thinking i was healed and RA wasn't coming back. It started with the normal hands and wrist pain and stiffness and rapidly spread to every joint in my body.  Joints I didn't even know existeded screamed in pain.  I was in hell to put it mildly!  
I remember the simplest things became impossible to do.  Let me give you some examples.  Picking up a milk jug! Simple right?   Wrong!!   When did the milk jug turn into a cinder block?  It felt like it was ripping every joint and tendon just by simply lifting the milk jug.  It took two hands and some moaning in pain to get it lifted.  That's only the half of it though.  Now i gotta get the dang thing open.  With swollen stiff sore hands and wrists (what felt like rusted shut joints) opening it with my bare hands was out of the question.  I would either have to ask my 9 year old daughter to open it for me or I had to try to get it open with something that had a good grip to it.  Simple things like pulling the covers up on myself at night was impossible, rolling over, dressing myself, getting up and down from a seated position became impossible without help.  How did I get hear.  What is happening to me???  I had been in pain most of my life , bad pain, but nothing like this.  My RA was outta control!!  My Rheumatologist wasn't helping one bit despite the meds the steroid shots and even iv drips I would get were very temporary and only bought the pain down a notch or two  for a short period of time.  I remember everyday walking into work with knee braces on under my scrubs and splints on both wrist and taking baby steps to the door thinking to myself, this too shall pass, suck it up, don't cry, you got this!  I had to buy a raised toilet seat, which is as embarrassing as it gets! I had splints, braces,heating pads in ever shape size they make but nothing at all helped. Simple things like straightening my arms out to lift up the phone at work bought me to tears!  What was happening to me??   I can't live like this!  The chemo drug Methotrexate wasn't cutting it but for some reason my doctor must have went deaf when I pleaded with him in sobbing tears to please put me on something else this isn't working don't understand how much pain i am in don't you care at all. 
It wasn't till a year and a half later , yes a year and half of this excruciating pain to where i could no longer care for myself, I had become completely dependent on my husband to take care of me and our kids. I was fed up with my current doctor not listening to me nor helping me so I switched doctors! 
This doctor would on the first visit change my life for the better.  He switched me to Enbrel and gave me shots in each shoulder ,which where extremely painful but so worth it in the long run.   
 Yay!!  Thank you Lord. I could move my arms again!   I was unable to up to this point for a year and a half dress myself, comb my own hair, pick up my young son or anything simple for over a year and a half!!  
 Enbrel has been my miracle!  The answer to all this pain I had been dealing with for 19 years.  The drug that changed my life.  I just pray it doesn't stop working because more times that none your body gets used to the drug and you are back to the drawing board at trying to find a med that works.  I had been so depressed for that year and a half long flare.  I had many days i where I just couldn't force myself to leave the bed.  I would lay there sobbing in tears for my life was falling apart.  I even prayed to God to please if he can't make the pain stop to just let me die.  I couldn't live like this.  I couldn't take this pain for the rest of my life.  I knew suicide was completely outta the question.  I just could never ever do that to my family.  But I can honestly say at that point in my life I felt better off to be dead than alive.  I had given up hope. If it wasn't for my husband I don't think I would have made it though that terrible period in my life. Thank you baby for always being there through the good the bad and the ugly you have always been my rock and to say thank you doesn't even begin to express my graditude, love and appreciation for all you do.  He is my strength my rock that always encouraged me to not give up and that it will get better and ya know what , he was right!  It did ;)



4 comments:

  1. I'm glad you fired the idiot Dr. When it doesn't work you need to onve on. I fouind a bunch of studies today that say just that. Sounds like that doc was not keeping up with current treatment methods.
    Good to hear a success story and I hope it keeps on working.
    The RA trials nurse I met knew people on the same biologic for 12 years plus and still doing well with it. That was good news also

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    1. My previous doctor Annette passed away and I was stuck having to see his son who was in the same practice. He was nothing like his father and extremely rude. He didn't ever listen to a thing i told him. I begged him to change my meds that i couldn't go on like this. He was even the one to tell me if i didn't get my RA under control within 10 years i would be dead but yet he refused to change my medicine. So glad i don't have him as a rheumatologist anymore. People like that don't deserve to be physicians.

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  2. Hi Tray, Im fairly new to the world of blogging, so much of what you have said in your post is familiar with me. I was diagnosed with RA 16 years ago and tried to continue working without sucsess, the disease simply did not settle while I was trying to continue working. Im in Australia and I now am on a disability pension, the disease is now in remission for me but I still get mild flares "warnings" if I do to much or dont look after myself as is the case in recent months. So Im currently getting back on track so I dont experience as you did "the mother of all flares" I have no doubt whatsoever if I returned to work this would then be the case as well. So nowdays I spend at my hobby of making furniture at my own pace and if its a bad day then I do nothing, keep smiling Im going to enjoy looking at your blog quite regular, thanks so much for sharing, Andrew

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    1. Thank you for taking the time to read my blog. Makes me feeling like it is all worth it if someone actually reads it and gets something from it. I just found out today I have to go off my "miracle drug" Enbrel till i am further instructed by my Rheumatologist because my ANA test came back with elevated numbers (bloodwork my PCP did) and she is afraid i have drug induced Lupus so its just another bump in the road although I would be lieing if i didn't say i'm terrified to be without Enbrel cause I know exactly how bad it can get! I'm the same way Andrew. The more I try to do (even like working full time at a desk job for me) the worse the pain spikes. I too am now on disability because my body can't hanlde the stress of a fulltime job. I wish you the best and thank you again for taking the time to read my blog. ;)

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