Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I hate venting, I normally am pretty good about not venting and just going with the flow but lately I just dont want to give a crap anymore.
A little bit more background:
I post here often but i figured I would start at the top. Since i am not exactly frequent. I am 23, full time college student in the nursing program. Which i absolutely love except its extremely stressful, but i made a promise to myself that i wont let my health win. I do not work, my parents and i have discussed that focusing on one task is best than both. I have seronegative Rheumatoid Arthritis, while it is seronegative it is in the moderate to severe category. On top of that I also have Sarciodosis, which thankfully is controlled by my RA drugs. I also am asthmatic, obese and I have visual impairments.
I have a beautiful niece who i am absolutely smitten with and she is positively one of the things that makes the week bearable, my tuesdays spending them with her. She is 7 weeks old now, her special smile for me is just precious.
I love my Rheumy, she spends hours listening to me and trying to sort out the complicated puzzle that I am. My current medications are Simponi Aria every 8 weeks, 4 tablets of MTX, Vit D supplement from OTC, Aleve as needed, and prilosec. This is not an unmanageable medication list, back in december we had to go 2 months without my medications completely as my liver functions were elevated outside of my docs comfort level, lets just say they got near 100.
While i was off the meds, near the end of Feb she did give me a prescription of prednisone and then we started adding more medications. Fast forward to March, I got sick with my usual spring time cold that turned into bronchitis and needed antibiotics. So to say the least my medication has been sketchy and i feel like i am playing catch up more than keeping the medication levels at the same level. So I am exhausted. And I hurt more than i probably care to admit.
I am over it. The every 3 month appointments, the every 8 week IV, the every 4 week blood draw, the 2 days of sickness, the look i get from people when i have to sit on a bench or wander further out of the way to the elevator because the steps aren't going to happen. I want to be a 23 year old who doesn't have to worry about anything and can just go out have fun with people and not worry about how that night out will affect me tomorrow or the next day, i cant borrow many spoons as i don't know how many i will have for tomorrow.
On the outside I am a 23 year old, on the inside i feel like im 80. I wish i could turn off the medical switch and just be Teu. No Teu with RA. No Teu who cant go drink with friends, not that i would but still, because my medications suck and i cant be a designated driver.
Ugh. I am just exhausted. Can i just be like garfield on mondays and hide in my box under my covers with a pan of lasagna?
I'm scared. I dont like this not knowing crap. This craziness. When I graduated high school, 5 years ago(bhahahah im a youngin), we had to do a project of where would we be 1 year, 5 year and 10 year after high school. 1 year i figured i would be in university, 5 year i would be done with university, starting my career of choice at the time it was a special needs teacher, with a boyfriend and thinking about starting my family, or maybe have my first baby by now and in 10 years, I would be mom of 2 kids and have a successful career under my belt.
I think i made a wrong turn back there somewhere. Can i get a refund? Or go and slap the teacher that created that project? It bums the heck out of me at times.
On the flip side, i will be finishing college in one year with 2 associates degree and no other idea. I quit planning!
A little bit more background:
I post here often but i figured I would start at the top. Since i am not exactly frequent. I am 23, full time college student in the nursing program. Which i absolutely love except its extremely stressful, but i made a promise to myself that i wont let my health win. I do not work, my parents and i have discussed that focusing on one task is best than both. I have seronegative Rheumatoid Arthritis, while it is seronegative it is in the moderate to severe category. On top of that I also have Sarciodosis, which thankfully is controlled by my RA drugs. I also am asthmatic, obese and I have visual impairments.
I have a beautiful niece who i am absolutely smitten with and she is positively one of the things that makes the week bearable, my tuesdays spending them with her. She is 7 weeks old now, her special smile for me is just precious.
I love my Rheumy, she spends hours listening to me and trying to sort out the complicated puzzle that I am. My current medications are Simponi Aria every 8 weeks, 4 tablets of MTX, Vit D supplement from OTC, Aleve as needed, and prilosec. This is not an unmanageable medication list, back in december we had to go 2 months without my medications completely as my liver functions were elevated outside of my docs comfort level, lets just say they got near 100.
While i was off the meds, near the end of Feb she did give me a prescription of prednisone and then we started adding more medications. Fast forward to March, I got sick with my usual spring time cold that turned into bronchitis and needed antibiotics. So to say the least my medication has been sketchy and i feel like i am playing catch up more than keeping the medication levels at the same level. So I am exhausted. And I hurt more than i probably care to admit.
I am over it. The every 3 month appointments, the every 8 week IV, the every 4 week blood draw, the 2 days of sickness, the look i get from people when i have to sit on a bench or wander further out of the way to the elevator because the steps aren't going to happen. I want to be a 23 year old who doesn't have to worry about anything and can just go out have fun with people and not worry about how that night out will affect me tomorrow or the next day, i cant borrow many spoons as i don't know how many i will have for tomorrow.
On the outside I am a 23 year old, on the inside i feel like im 80. I wish i could turn off the medical switch and just be Teu. No Teu with RA. No Teu who cant go drink with friends, not that i would but still, because my medications suck and i cant be a designated driver.
Ugh. I am just exhausted. Can i just be like garfield on mondays and hide in my box under my covers with a pan of lasagna?
I'm scared. I dont like this not knowing crap. This craziness. When I graduated high school, 5 years ago(bhahahah im a youngin), we had to do a project of where would we be 1 year, 5 year and 10 year after high school. 1 year i figured i would be in university, 5 year i would be done with university, starting my career of choice at the time it was a special needs teacher, with a boyfriend and thinking about starting my family, or maybe have my first baby by now and in 10 years, I would be mom of 2 kids and have a successful career under my belt.
I think i made a wrong turn back there somewhere. Can i get a refund? Or go and slap the teacher that created that project? It bums the heck out of me at times.
On the flip side, i will be finishing college in one year with 2 associates degree and no other idea. I quit planning!
You're so right on, the pressure, spoken or unspoken from others is a tough one. Sincerely my hat is off to you for all you're doing.
Sounds like we may be cut from the same cloth-I like to turn over every stone, plan, organize, but that is lost on this illness.
Congratulations on your impending college degree!!!
We understand, although I have to be honest and say I don't know what it's like to be young with this wretched disease. You are very strong to be doing all that you are while battling your body everyday. I think it's ok to not know exactly what you're going to do five years from now. You're going for that degree, and heading toward a wonderful career. Just think of all the hurting people you'll be able to help and make a difference in their lives!
Somewhere along the way, God may bring a wonderful loving person into your life, and you'll still have that beautiful marriage with children. God is developing you into the right person for her. It's just not time yet. All of our life struggles shape the person we are, and I personally believe that those who battle a chronic illness end up being some pretty fantastic and rich people!
So don't feel guilty for venting. Think of it as going on a long hike and stopping to catch your breath and replenish with rest and water. You'll eventually get back up and continue on your way. I wish you the very best. And let me say again that I am so in awe of what you are doing in your life, despite your challenges. Please keep us posted.
Hugs,
Elizabeth
Continue to do so. We all have been there - done that.
My dad gave me some advice years ago when I was your age. Keep in mind he was a football player in high school back in the 1950's. His advice was: Take It 5 Yards at a Time. Have long term goals and short term goals. Take care of the small things and the big things tend to take care of themselves.
I still use this approach to most things and especially to RA. You are certainly doing well with your college. Congratulations!! But, don't be too hard on yourself. I have found that with RA, I can plan but I better have plan B and maybe even plan C. So unpredictable this disease. But, that has also allowed me to become a more flexible person and not so rigid in my thinking.
I try to turn everything I go through into a positive learning experience. Cup half full, not half empty. I agree with fibrolizzy that people who battle chronic illness end up being fantastic, rich people. We have more depth than most and we are tough as nails. You are part of a great crowd - don't forget that!
Hang in there. Take it 5 yards at a time. Be kind and gentle to yourself. God will provide the way and the strength to walk that path.
Blessings,
Linda
Oh Linda,
this made my day.
thank you
hang in there Teun - i find what works for me is posting on other people's threads that are having an equally hard or harder time than myself or PM-ing them. For some reason I find this the best way to get out of my own misery. I don't know if that will work for you. It can't hurt!
be strong
Depot
I wish there was a magic pill I could pass out to us all, but we know the magic is not yet at hand.
So, please, by all means, vent. We hear you and we understand your frustration and the unknown. We hear you. We care.
Peace
Bluedogs2
I am just plain tired im ready for a long nap that spans for two weeks haha.
You deserve to vent & feel you've had enough.
After all your a strong young woman who refuses to allow the beast to dictate her future. That takes more strength & courage then some will ever experiance the need for.
I could not imagine but if I were your age facing this I'd hope I'd have the determination you have.
Give yourself venting time. You need it.
Life sweetie rarely goes as planned. No matter the circumstances.
To attempt to plan to far a head can do one in.
If high school kids really knew the challenges life throws at you they'd beg to stay on HS.
You will always be a step a head in strength & compassion.
One day soon you'll look back & realize how some bad situations build you up to give so much good.
We need more people like you in this world.
Sammy
I agree with everything that has been said, specifically what Linda said, "take it 5 yards at a time." YES. Do not think too far off into the future, get through one week, then the next week. And do not beat yourself up about the "could haves" that you thought your life would be years ago.
The thing about autoimmune disease that I have been thankful for is how tough it has made me, and how it has made me listen to my body. I try to do as much to control the things I can (clean diet, try to exercise, get more sleep, etc.), and let go the things I can't (meds, flaring, etc.)
You are incredibly strong for going through college with these burdens. I was also diagnosed before graduating .. I was 25 and in graduate school. It was extremely hard to finish, but the feeling of getting that degree despite the struggles you've overcome is very surreal :) You WILL get through this!
And I will tell you first hand, having a chronic illness and working with sick patients will make you a wonderful nurse. You will be able to empathize with your patients like others can't.
It can be hard when your young to separate family's expectations (or peers or even society expectations) from your own. Especially at your age... A lot of pressure there.
It will be hard to try to remember to focus on what is important to you and forget the rest. Its your life and you will live the best you can on your own timetable. Maybe some of your personal goals are out of reach right now but may not be in the future.
I hate to break it to you but with RA you will likely have a number of treatment setbacks, periods of time when your disease is not under control... Usually waiting for something to take effect. I think the key to look at these as TEMPORARY setbacks and focus on the future.
I know it seems like we spend a lot if time waiting, for appointments, for tests, for drugs to take effect... Its true but at some point for most of us it does pay off. I got almost 4 years of reasonable disease control from Enbrel after 2.5 years of trying dmards. I would not have had those 4 years without persisting.
Just now going back on Actemra at reduced dose and SubCu instead of IV. I got too suppressed the first time around on IV and got infection. I may have to settle for partial control of my disease and not full remission. Some control is still better than none.
RA may require some adjustment to expectations but don't give up on your plans just modify them to fit with where you are with your disease.
Keep your chin up and remember the only opinion that really counts in the end is yours.... Don't be too hard on yourself either, you have a good excuse for cutting yourself a break.
Cheers, Lynn