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...
So its been seven months since my diagnosis was made of Rheumatoid Arthritis. Five since Sarcoidosis was added to the list. Six since i started Methotrexate injections. Four months since i started Humira.
Tonight was my Humira injection. I had my mom give it to me since the last four times i tried to give it to myself i kept...pulling back to soon and i wouldnt get the full dose.
I hate this. I hate all of it. I want it to go away. I want to stop worrying about shots and how it will make me feel. I hate feeling icky during the weekends because of the drugs. I do mtx on thursday. I want to be able to just go to the local flea open air market and walk around. Not worry about how much sun because the toxic mix i have on board makes me ubber sensitive to the sun.
I want to not look like a pin cushion every month from the blood draws. I want to be like my friends and go have a drink for the sake of it. Not say i cant because of the meds.
I hate this disease.
*fumes*
I hate making my mom tear up as she listens to me scream as i take my humira. or the fact that my parents dont make much fuss about how they are feeling around me. Because they know i feel worse. I dont want to be the bravest person my mom and stepdad know because they know what this disease will do. My stepdad is a survivor of cancer yet he still thinks im stronger than him. He doesnt think he could do what i do, get up with how bad im feeling. He can tell how bad im feeling just by looking at me and we amend our plans because of it.
I want it to go away. I want to be just normal.
I needed a vent.
Tonight was my Humira injection. I had my mom give it to me since the last four times i tried to give it to myself i kept...pulling back to soon and i wouldnt get the full dose.
I hate this. I hate all of it. I want it to go away. I want to stop worrying about shots and how it will make me feel. I hate feeling icky during the weekends because of the drugs. I do mtx on thursday. I want to be able to just go to the local flea open air market and walk around. Not worry about how much sun because the toxic mix i have on board makes me ubber sensitive to the sun.
I want to not look like a pin cushion every month from the blood draws. I want to be like my friends and go have a drink for the sake of it. Not say i cant because of the meds.
I hate this disease.
*fumes*
I hate making my mom tear up as she listens to me scream as i take my humira. or the fact that my parents dont make much fuss about how they are feeling around me. Because they know i feel worse. I dont want to be the bravest person my mom and stepdad know because they know what this disease will do. My stepdad is a survivor of cancer yet he still thinks im stronger than him. He doesnt think he could do what i do, get up with how bad im feeling. He can tell how bad im feeling just by looking at me and we amend our plans because of it.
I want it to go away. I want to be just normal.
I needed a vent.
Vent away and please accept this gentle cyber hug to help you.
Peace
Bluedogs2
This will sound corny, but give it a try. Think about the good things in your life, reasons to believe you are lucky, despite the RA. RA is not who you are.
I'm sorry you are feeling so bad right now, it is completely understandable.
Lynne
I think you are brave, I think we all are. We are in a strange body that doesn't function like it once did, and we will never be the same. And only we understand it.
I promise that there will be days that you will feel better and almost normal. It takes awhile for us to adjust to our medicine, but there are good and fun days ahead. There will be hard day's but always good day's too.
Never forget who you are, and try to stay as positive by reading, going to movies, and slap that sunscreen on and go to the flea market, fight that pain and you are strong! Never let this stupid disease get you down. =)
I know how the mtx makes you so tired, when you start getting better
your doctor will adjust that, so you won't need so much.
Your parent's sound so wonderful, I got my RA late in life, I wish I could take all your pain away, it's so unfair to get RA young. Hugs. Vent away and try to do some fun stuff!
Lin
Vent away. We all wish that we could take this pain away for you...
we get it. you can vent anytime. there have been some 22 year old persons who have also signed on recently talking about challenges I think of school, moving, living with your peer group without always being the sick one - I hope they were a comfort. I bet you feel your future was changed before you even had a chance to live it, right?
But I bet your family knows you are still YOU :). You will have good days where you will contribute in a given situation they way you would have before this diabolical disease. Hang your hat on those days OK?
You have super parents.
Your post reminds me of watching my daughter crawl back into her body brace (I had to do the buckles/velcros) after a shower in a body shirt. Her body was discolored from the brace taking away the oxygen in her skin. she was in pain. I could not make it go away. It is the weirdest type of feeling of helplessness as a parent. Remember your parents feel like that in the midst of their free floating all encompassing love and respect they have for you.
I tried to find periods of joy for us to share (she's an artist) - don't forget to find some small spots of joy once a a week (a smile, a movie, a shared conversation not about RA) to show your parents - that uniqueness that will always be you. :)
My daughter also used to cry out in desperation at least twice a year I "just want to be normal" the words you used. I validate you. This family knows how you feel
Let your family love you.
vent anytime.
Depot
I think all of us have days where we just want to throw in the towel. Then we pick ourselves up, dust ourselves off, and move on doing the best that we can.
I will be thinking of you today, sending good thoughts your way, and praying that you start to have more good days than bad ones.
((hug))
I am sorry you having such a hard time. This disease is horrible and you need to be able to vent to people who understand. That is why we are here.
You and I are on the same timeline with diagnosis and starting both meds. If you are finding that you are still having more bad days then good days maybe your Humira needs to be given more frequently like mine did. I now take it weekly instead of twice a month. Made a big difference. I was taking it on a different day than my MTX but had to take them in the same day last week. Wow, what a difference! It seems the Humira blocked the fatigue aspect of the MTX! Just some ideas to talk to your rheumy about.
It sounds like you are using the auto-injector. I personally hate those things! I am a nurse and hated them when I had to help patient's with them. I use the pre-filled Humira syringes and like them much better. There are no loud clicking noises and you control how fast or slow the medication goes in. This may be something for you to consider as long as you can handle the idea of giving yourself a shot where you can see the needle. You could also have your Mom help you if needed.
You are a strong person to live with disease! It will make you even stronger! Remember you always have us to come vent to when you need to. You are not alone!~Lori
You said you look like a pincushion from the blood drawns...what about wearing shirts that have sleeves long enough to cover those areas? Like a long sleeve shirt and roll up the sleeves?
That open market you want to go too...again-long sleeve blouses and a hat? Umbrella? Go first thing in the morning when the sun is not as hot?
I think you should feel proud of yourself and realize that your family is right and that you're brave and tough-if your stepfather can battle cancer-you can get thru this,one moment at a time!
I have found that even when my friends "understand" they don't really understand. Otherwise, I would not have had a friend making fun of me this weekend when we were vacationing, and I was worried about "overdoing it" and then not being able to get out of the bed the next day.
The good news is, my meds are working very well -- not complete remission, but good enough. On Friday, I hiked about 4 miles. On Saturday, I mountain-biked 19! On Sunday, we hiked another 10, and on Monday, I biked another 14.
Granted, I felt like crap the entire time Monday, but I did it :).
You can too.
I forget to add - Lori is 100 percent spot on.
LOSE THE INJECTOR :) - i mean call up the rheumie and can it. Lori is a nurse to boot. That was my exact experience. the silly injector shoots it all in at once which makes it like walking on a stove. get the pre-filled syringe when I took humira for a year the pre-filled syringe did NOT cause pain like the auto injector.
it's something simple. You need a brand new script for it. You can't just call the specialty pharmacy, your doctor has to call in a new script for the pre filled syringe.
Might as well take care of the pin cushion thing. and make sure you pre ice, if you have the time or energy.
Depot
Here's another witness to the Humira auto-injectors being completely awful. Move up to the syringes. How is your treatment working? Are you making some progress?
Overall i feel slightly better, i am not as bad as i was a while ago. But i dont notice any big changes except maybe my hands arent as inflamed.
thanks everyone for their kind words. some days this is just hard.