Sorry, I know this is a q and a forum, but I just want to thank the well trained and knowledgeable staff here, especially, Alesandra your help has possible saved me, I'll explain.
Sunday was a difficult night for me, my struggles all caught up with me, I've been diagnosed with ra for 11years, the last 2 have slowed me especially, I was a successful strength athlete, 5'8 230lbs, now 180 same waist size, I stuggle some days with the simplest tasks, I'm still employed, thank God, my insurance keeps going up with less coverage, I try and work weekends to pay for meds, and the new tests my new doctor has set up to get me off of some of the 5- different meds my old rheumatologist had me on, any way, Sunday I had reached my limit and reached out here with life altering desperation, I was done, and 4 hours later, midnight or so, Alesandra wrote to me, God Bless you, and the staff!
Hi tryingharder! Thank you for following up with me and our team. I'm so so glad to hear you're doing better since Sunday night. I'm proud of you for sharing your story here so transparently so that others can see. I also can hear how challenging that was for you to manage. I really hope things have changed for you this week. RA truly makes an impact on mental wellness, and it's important for us to recognize that. Sending positive vibes your way! You got this. - Alesandra (RheumatoidArthritis.net Team)
Thank you guys so much for your help and support, I know I've not been through most of what you have, but it is really nice to know you care and have been in my shoes, I don't feel so alone, you see, I don't share my depression with my wife because she is already overwhelmed, it seems with how this ra has physically attracted me at times, I know she cares and loves me, I just don't want to scare her away, so thank you all, I'm tearing up, I feel like you all are my family, and I love you all!, God bless you..
Hey tryingharder,
I'm so sorry that things have been so very rough for you! I have been diagnosed with this disease for 19 years, and there have been some really rough stretches during that time. I too have felt at the brink of what I can handle at times, and I hate that that is where you've been, as I know how awful that is.
I do hope that your new doctor is able to find a treatment plan that is more effective for you. For me, I've been helped by new meds (which continue to be developed) and by figuring out little pieces of the puzzle of what works and doesn't work. For example, I've discovered that stress has an enormous impact on my disease activity, so I've restructured my life and taken up some practices to reduce and address stress in my life. It's not a cure, but these things have kept the really rough stretches from being permanent.
I admire you for reaching out when you are at your darkest time, as that is often when people recoil into themselves. It takes a lot of strength to reach out when you're feeling so vulnerable. Please know that we get how awful it is to live with this disease, and how depression and despair can be as hard to contend with as the physical symptoms. I hope you'll continue reaching out whenever you need some support.
Thinking of you and wishing you better days ahead,
TamaraHi Tamara, thanks for the reply, I was wondering if I could ask about the practices or techniques you use to deal with stress, your right, I also think stress is damaging to our condition, my stress decompress is definitely my therapy dog, Holly and cat, Oliver, they know how I'm feeling and love unconditionally, but lots of times I miss out on that happy place, and find my self stressing, which usually brings about a flare, so hopefully you might a few suggestions. Thanks again.
I’ve been where you were. I’ve had RA for going on 33 years now, and about 10 years ago or so I was pretty much at the end of my own rope. I had gained almost 100 pounds from corticosteroids, and my belly was so distended that it pulled on my spine enough to give me spinal compression fractures. On top of that I had just had a heart attack and the heart medicine was making my lower legs and feet swell so badly that it was like I was wearing flesh colored clown shoes. The pressure of all that swelling pushing out was so bad, pain medicine didn’t even touch it. I was literally trapped in the flesh prison of my own body and it was awful. I felt like there was no escape and I would have given anything for a few hours relief. That was the month I started writing.
All I can say is that I know those low lows you are feeling and although it may not feel like it right now, things will eventually get better. I can’t tell you when or how, but one day you’ll wake up and it’ll be a little better. It took my doctor 25 years to find a medication regimen that worked, so trust me I know what it’s like to feel like it’ll never get any better. Plus you habe something I never had - an amazing community with great people to avail yourself of. So don’t hesitate - we’ll always be here. DPM
Hey
!
Thank you so much for sharing your story here. I can understand how difficult it is to reach out when you are not feeling yourself.
You are not alone, as I hope you can see from the comments. I was diagnosed in the "prime of life" at 20 years old. I was, like you, an athlete and was on the fast track to vet school.
My diagnosis changed me and my life. I went through a huge depressive state where my meds were not working well and I felt completely overwhelmed. Thankfully, I am now in a better place (meds, mentality and all).
May I ask, how are you feeling now? All the best, and please, if you ever need to reach out, we are here for you! ~MonicaHi Monica, thanks for asking, my medicine is going okay, trying to balance a good diet with it is key, I usually struggle with it, salty foods and deserts are a constant battle, speaking of battles, I'm fighting with my insurance to pay for emberel, to stop the progression of my joint damage, I can't afford a monthly prescription for it that costs $5,300, I was wondering if you have any helpful tips? Thank you very much.
Hey
! I am so glad you are doing okay. If it makes you feel better, I am terrible about my diet. It has taken quite a bit of time for me to find a good food routine that doesn't exacerbate my symptoms but I still cheat and have chocolate and other goodies I love.
I figure moderation is the key. I don't want to deprive myself of the things I love (life is hard enough as it is!) but I do be careful.
Aside from sugar and lots of salt are there any other foods that you find highly inflammatory to you? For me, potatoes are an instant trigger. I will flare as early as 12 hours after I eat them!
Have you checked out the Enbrel co-payment program? It helps you afford your medication by covering part of the cost. All you need to do is pay the co-payment. Your rheumatologist's office should be able to assist you in signing up. Here is more information on it: https://www.enbrel.com/support/financial-support
It brings down the cost exponentially. I hope this helps!
