After I was blessed with my greatest accomplishment I was diagnosed with RA

By paytonsmom

1 min read

I was 32, I was athletic growing up an all star gymnast, cheerleader, runner etc. After I gave birth I noticed I was having difficulties bending fingers, knees etc. Thankfully I had a Dr. who immediately ran an extensive amount of testing. Due to the fact that I already have auto immune issues (I had my thyroid removed at 17) so when my CCP & IGA came back off the chart as well as my RA factor, they retested. So from 32 to present I can't begin to explain how difficult life has been. My CCP (IgG & IgA) have never and I mean never once dropped below 250 (that’s where labs stop registering). My RA latex has never dropped below 104.3 (norm 0.0-13.9). Please know I've tried every single medication on market, Enbrel Methotrexate cocktails, Remicade (this was my favorite; I died 2 times b/c the drip on medication was too fast IT'S NEVER an allergy it's administration of medication- the drip speed.) I've been in the Pharma industry for 20 years, I was lucky to have many friends like Glaxo Chairman. Yes, I tried synergy, believe me, I have tried everything. My body seems to be rejecting meds - so I deal with life modified all things. I now wear clothes with no buttons. I had a nanny teach my daughter how to tie shoes early. Did I fail to mention I had 4 surgeries to fuse my fingers. My 11-year-old calls them "the ugliest fingers ever," they are horrifying. I've saved the best for last I was told I have interstitial Lung Disease. I stopped a long time ago updating my family when you take the no pain management route. I get a lot of OPINIONS, for me I'd be in rehab in a month. so here I am today 43 suffering in silence (well of course not here in this arena) I just wanted to say how much I appreciate everyone sharing it helps to know I'm not alone.

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Kelly Dabel Community Admin
Hi paytonsmom, Thank you so much for taking the time to share. You have been through it girl. I am so glad to hear that our community has been helpful to you and reminded you that you are not alone. I know many here will appreciate what you've shared and will relate. Please stop by anytime you want to vent, get info, ask questions or be reminded that you are not in this alone. We're here to support you! Let us know if you have any questions we can help with. We appreciate you being part of our community. Kelly Dabel, RD - <a href='https://rheumatoidarthritis.net' target='_blank'>RheumatoidArthritis.net</a> Team
pwilcox Member
Hi Paytonsmom, please know you are not alone. I am newly diagnosed (9 months) and it took 18 months to get a diagnosis. I don't understand why Doctors do not test for RA when you first go to them with pain. It has been a devastating experience for me and I am learning so much from reading and blogs like this one. I first thought I would just go to the Rheumatologist and get a pill that would fix everything and just get on with my life. How wrong I was! It changes every day. Life is still good, we just have to approaching it differently. I stopped trying to educate friends and family. They just don't understand that RA is entirely different from 'just arthritis', though I do post on my Facebook page for those that are interested. Hang in there, thanks for sharing.
pwilcox Member
Hi Paytonsmom, please know you are not alone. I am newly diagnosed (9 months) and it took 18 months to get a diagnosis. I don't understand why Doctors do not test for RA when you first go to them with pain. It has been a devastating experience for me and I am learning so much from reading and blogs like this one. I first thought I would just go to the Rheumatologist and get a pill that would fix everything and just get on with my life. How wrong I was! It changes every day. Life is still good, we just have to approach it differently. I stopped trying to educate friends and family. They just don't understand that RA is entirely different from 'just arthritis', though I do post on my Facebook page for those that are interested. Hang in there, thanks for sharing.
paytonsmom Member
Thank you guys for commenting I'm sorry if I came off as Debbie Downer there are some GREAT & EFFECITIVE DRUGS OUT THERE ... they just don't seem to work for me, so please try all meds b/c truly there are some great meds like embrel, remicade (Pls just ask & have them reassure you the drip is very very slow again the molecule within the drug is so large that that is was caused the issue epi shot into the chest after benedryl shots failed etc after I crashed this myself & Dr where told by Jansen the Pharma company who makes) I share that tidbit b/c remicade was awesome it worked great I can no longer have it b/c I'm flagged as having the 2 crashes. Pwilcox I get the "just arthritis it's amazing how uneducated people are, including myself pre diagnosis. It truly has effected every signal part of my day to day life .. I really only cry when this disease effects my daughter and my abilities to do things with her like six flags or water parks etc does anyone else feel so run down they barely just get out of bed? Not as much from joint pain but fatigue? ... She is a blessing I just find bad day I feel having her was thy most selfish thing Ive ever done.