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Lost young adulthood to RA /rant

Nov 19, 2016 4:13 PM

I no longer know what my future looks like. I cant compare what I have been picturing while pursuing my degree in accounting with the new reality of my life. I was diagnosed with RA last month. I'm only 20 and I just am so mad at the world right now.

I struggled with mental health growing up so I didn't get to have a typical childhood. For the last few years I had finally been in a great place. Going to community college, finding my career goals and myself. There were bumps in the road but I reached a place of complete happiness with myself and confidence for my future which was a new thing for me. To finally have my mental health issues under control after working SO HARD (therapy, medications, more therapy, life changes) and then be knocked down again is depressing.

I was also so proud because I am obese and this year I have been working hard to eat right and exercise and I have lost 30 lbs but now I just can't care enough to try hard to lose more weight (even though I have more to go). I was finally doing so good, I was so happy. I have been trying to hard to stay positive since midsummer when I started having a ton of joint pain but right now it is too hard.

Why is this happening to me?

Why couldn't the RA at least wait a bit so I could finish school first?

Why couldn't I just avoid it all together?

I feel that I've already lost my optimism and positivity. I hate that I'm more negative, grumpy, irritable, and crying. There will be days where I think it is getting better but the next day the pain comes back. I have lost the activities that I used to love so much. Adult paint by numbers, crochet, long hikes, sitting on the floor with my dog, being able to move quickly without regretting it, cutting up food for dinner, taking notes in class, the list goes on forever. I still do a few of these (writing in class is unavoidable) but I hate that it is not enjoyable and can be so painful.

It is so unfair that at 20 years old I have to slow down, right when I want to be speeding up. Its unfair that I know how to navigate the medical system, not just from my own issues but because my mom and grandma have had so many serious issues in the last year. It is unfair that I hear people at school talking about fun activities and all I say I'm doing it sleeping, resting, trying to get caught up on schoolwork. It is unfair that I can't and never will be able to be reckless, can't stay out late, my body is so exhausted. Can't ever go drink more than 1 drink, my RA medication is hard on the liver so alcohol is out. Can't be doing crazy activities, rock climbing, skydiving, who knows if I would have done those things but I just want the chance.

I never had the normal teenage year so I didn't get to do the normal teen things. I guess I felt like I was going to get some fabulous years in my 20s. But now I feel like I am having to skip my young adult life too.

I don't want to go from child to old lady. I feel like I am trying to find myself like any other 20 year old, but I don't know how. I am just grieving for the lose of my current & future life.

Thank you so much if you stayed and read this crazy long rant. It feels so good to let all of this out. Any advice or kind words are greatly appreciated.

Nov 19, 2016 4:26 PM

Sometimes ranting and getting it out is the only to start to learn to make some sort of a way forward!( and i say that only because ive been exactly where you are, angry at the world, greiving for the life you had olanned out for yourself, hating that you now need to re evaluate it all etc etc)...Given what you have written, you aound like someone who has a lot of resilience - you have clearly been through a lot in your life so far and you have demonstrated a resolve to dig deep and focus on moving forward. Its not suprising your experiencing this roller coaster, the diagnosis is so new at present. My dad was 27 years old ( hes now 63) when he was first dianosed with rheumatoid arthiritis. Back then there wasnt the medication and knowledge about the illness that there is now... despite it all, he has worked self employed throughout all that time and plans to continue to do so... he takes care of himself, sleeps well, eats a balanced diet and above all tries to manage his stress levels... im not going to fib, he's on methotraxate and high level injections twice a month and hates the side effects but he has a life, makes plans and commits to them regardless... hes not let his illness get him down but i admit its had an impact on his mental health when he was in his forties...you can do this!! Absolutley you can!!...research the illness, ask questions and push with gps etc for referrals to physios etc that can give you alternative pain relief instead of drugs.big and gentle hugs.xxx

Nov 19, 2016 4:31 PM

I wish I knew what to say ... You will learn to cope will these new challenges as unfair as it is. I have already read how amazing you are and what a warrior you are.
You found this place, a great start to coping with your grief. This space is full of wonderful people who listen and read your every word.
Welcome and I'm sure you will met many here with RA as well ...
Wishing you a pain free weekend.

Nov 20, 2016 4:33 AM

With everything you have pushed thro already you are a strong warrior who has gone through so much and I have no doubt that you will continue to fight your way through this as well.
Remember you need to grieve, grieve for the future you thought was ahead of you, grieve for the things that you won't be able to do and being angry is also part of the grieving process. Once you've been thro all the emotions that you need to then you can start the healing process where you can sit down and work out what you can and can't do and how you're going to achieve what it is that you.
I have faith that you will achieve many many things in your life that you can be proud of just like you can be proud of how you how you have coped with your mental health issues up to now.
Sending you { { { BIG GENTLE LOVING HUGS } } } XX

Nov 20, 2016 8:55 AM

Am so sorry hun. It sounds like you have had a rough life but still came through each challenge like a warrior. That's something to be proud of.

Please don't give up. I know it's a hard diagnosis to deal with. My mom has had it since a young age. (she is 78 now). They are constantly making advances in ways to treat (and forever hopeful) and cute this.

What are your doctors giving you to help?

I haven't read the replies so if I repeat anything all ready mentioned please accept my apologies.

One thing mom has said really helped (and it does help me when my hands ache) is wax therapy. I think Wal-Mart sells the kits for less than 40.00. Or we just used an old pot and melted paraffin wax in it. Then dip hands in the wax. Let it dry. The heat penetrates deep and yet it doesn't burn you.

Mom also does the Humira injections. (every other week) and that helped her.

Accupuncture has also been a huge help in the past.

Like most things it's trial and error (and successes) before you find what will it won't help you.

Mom has found little things over the years to help her. She still quilts but this year she has reached a point where I now cut her fabric for her.

There's special gloves a friend of mine used and it helped her to keep a job she loved until retirement. (she worked at the county clerks office).

Its normal to be angry, to mourn ... Even to want to give up on trying. ((((hugs))))

I hope you reach a point where you can once more pull up that inner warrior in you and continue making strides to reach your goals.

Nov 20, 2016 10:41 AM

You guys are so amazing ❤️ I really appreciate everyone who has responded! I can't even begin to say how much the kind words have really affected me

Mimikay I am on methotrexate currently (only 3 weeks in, so it will be a bit before we know if it works well) we debated less aggressive drugs but I am struggling with school and other things (also my mom who has RA never responded to lower level drugs) so she wanted to go a bit stronger than some of the other options

I am also taking nabumatone (sp?) for the short term until the methotrexate kicks in. So far that has worked pretty well, my doc says I might be a person that nsaids just don't work great for since many other things really haven't touched it.

I am going to look into all the other ideas! Maybe one of them will really be what I need to power through school 😁

Nov 20, 2016 2:21 PM

I am betting on you Petra3. I think one of the things most of us can tell you regardless of our diagnosis is to research. Our doctors don't always know everything. (did that make sense?) If you have a good medical team together they will work for you and welcome your input.

Have a wonderful week.

Nov 20, 2016 4:15 PM

Mimikay is absolutly right... research helps you to feel armed with what is factual about your condition and what is a "wives tale"...i have fibromyalgia and hyper mobile joint syndrome coupled with a non specific neuro issue... initially i felt so out of control and my anxiety levels went through the roof.. finding out about the conditions, medications and apeaking to others in the same boat as me has helped me to feel " yes i can do it, i can survive this"... i have a good standard of life, manage my pain as much as i can and i ask for help when i need it ( not an easy thing but very very necassary)... be strong matey..... your a born fighter.xxx

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