I hate this disease and feel like life has been stolen from me. ohh sure maybe I can go on some dreadful medications and for what? to die anyways?
I hear rhummy doctors always say well the disease will not kill them but the medication i give them will
how wonderful medicine that kills its so wonderful.
why can't they just give out overdoses of morphine.
hmm maybe I can move to oregon and tell them I want a overdose of morphine and versed...
despite all the happy happy stuff you folks write the fact is this disease is worse than having a massive heart attack and just dropping dead.
I would prefer that by far.
what joys i have to look forward to
i cant stand the pain the supplements the fear the unknown
I cant afford the new drugs
I just wish NY would be the same as oregon.....
If this got to bad I would rather be put to sleep like a wounded horse than suffer the fate of RA
hell I am 40 years old..... because of this crap I don't even know if ill make it to 50.....
this is the best they have to offer
and I hate BUSH and his dumb stem cell stance
I say the more stem cell research the better and I do not care about the morals of it all.
in fact I heard IRAN is doing research we can only dream of here.... how sad is that??????????
Iran?????? thank you bush your so wonderful.
I agree...RA sucks....but I have a lot of things in my life that are good and overshadow my own illness. It is not ideal, but there are so many worse things that I could be facing...or my kids...I would take this 100X over than to see one of my kids be sick. One thing that I can consider is that my mom who was dx'd at age 9 with JRA hit the peak of this disease in her 30s and since then has enjoyed a very active lifestyle. She has never taken anything more than asprine. So your future is not so bleak....and you know all of the good cliche's like "you have to roll with the punches" and " what doesnt kill you only makes you stronger"...there is a reason those phrases have become cliche'...because millions of people have faced things so difficult in there lives and have gotten through it, a little roughed up, but a lot stronger for it. And you will to...so (heh heh) keep your chin up and hang in there...your gonna get through this!
And just in case you really dont want any words of encouragment....
RA sucks, being sick sucks, spending money on this BS sucks, not being able to work, play, travel, ride my 4-wheeler, roller blade with my kids, teach my daughter how to do flip-flops, wash my car on a sunny day, swim with out getting wicked leg cramps or play in the park with my son all sucks eggs! I didnt ask for this...I have always been healthy, I have dedicated my career to taking care of the sick, weak, dying public. Giving up of myself unselfishly to others and their families...and this is what I get in return...To be a 32 year old mom of 2 young kids who cant even keep the house clean or put dinner on the table everynight. I have a husband who is having to learn how to not resent me and my needs...that drain on him as he works 6 days a week to support us...and we have lost our house....all of our toys...our whole lifestyle has changed because of me...and my suck ass disease.
But that is just the bad side of things.....
I take it you're new to this disease? First I'd like to know what doctors you are seeing that tell you if the disease doesn't kill you the medicine will? That's a load of crap! And you hear that all the time?
You won't do very well with this attitude Mark. Yeah; RA sucks....but you could have a lot worse problems. Once you stop feeling sorry for yourself and start accepting your situation instead of giving up and blaming anyone you can think of you'll learn to deal with things much better.
I was dx'ed with RA when I was 22 years old. I had a 4 year old son and a brand new baby girl at the time. I didn't have time to sit around and stew in my pain and poor circumstances. It took all the energy I had to take care of my family. Close to 13 years later I lead a very happy, productive life.
We have folks here who have lived with this disease since childhood. Can you imagine having the problems you have now when you were 5?
I don't mean to be rude to you; especially since you are new to this group and you are obviously here looking for help. The only help I personally can offer you right now is to advise a change of attitude. When you get over the "woe is me" part you'll realize life still has a lot to offer you.
Maybe you can stick around a while and begin to see things in a different light. I imagine there are many here with much worse probelms than you. You might want to pay attention to the way they handle it....you might just learn something that can be very valuable as you face your future.
I don't mean to get off on the wrong foot with you....and I apoligize if I've offended you; but your remarks are somewhat insulting to those of us who honestly want to accept our lives in a productive manner.
We're living proof that life with RA is not a death sentence.
RA does stink, but..... Did you see the interview with Michael J. Fox? How can he keep his spirits high when his body is writhing? I was so impressed. Somehow, down deep - I re-calibrated my anger against RA. I know it must help to have all the money and all the support he has. That is not a gift everyone is given. You must try to love life more than you hate RA. Best of wishes.
I hate this disease too. However, I have to decide whether or not I am going to let it have power over my life or accept what my limitations are. I have been in a funk lately and after some soul searching and Prozac I have decided I need to accept that I am not going to live the same life I did before the RA started to get worse. It wasn't easy to do this. Many tears, much anger, much yelling preceded this decision.
I am going to take the meds. I am going to take the risks that comes with them. At least I can say I tried and I didn't let it beat me. I feel compelled to take the meds not just for me, but for my family. I need to be the best I possibly can be for them. While it wasn't as active and as athletic as before, it is better than I would be without taking them.
I had to give up a career as a paramedic due to this disease. Helping people in need was my passion. I had a couple of other jobs before I stopped working. But I hated them.
We have had a definite change in lifestyle. My husband has to work his butt off now to support us. I never see him. He is either sleeping or working. Or carting me around when I can't drive. He accepted all this better than I did. I frustrated him to the point of where I thought I could never frustrate him by my denial. We are better now that I have learned to accept things. I have to rent the upper of a duplex. My neighbors suck and stress me out. Getting our boat seems to get farther and farther away because my medical bills are taking up a good chunk of cash. We haven't had a vacation in a few years. I have become a whiz at creative budgeting. I can't play sports anymore I only get to watch. All of this because of this stupid disease.
I am only 38 years old. I have a lot of life left to live. And I am going to do it to the best of my ability. I deserve to give me and my family that.
I'm in shocked that anyone would post something like that.
I'm not shocked. It sounds like the sound of a soul and psyche in anguish. Any of us could find ourselves in that place given the right circumstances, and we don't know Mark1's.
And, I suspect we're all fighting the fear, on some level, that this disease and our feelings about it, or something else entirely, could push us to the point of such despair. Let's be honest--we all have AT LEAST a whisper, and probably much more, of what Mark1 feels inside us some days.
Mark1, please keep coming back to this group if you think you can get some help here. I think you can. And please find a professional to help with the despair. This is a bigger thing than pulling yourself up by your own bootstraps--if you can still reach them with RA! Don't lose out on the good parts of your life that are still ahead of you--and there must be good parts coming, because that's how life works. But you have to be here for them.
It hurts. It stinks. You're not alone. Hang in there.
And Crunchy, thanks for saying what you've lost to RA. I couldn't really say why, but it helps to hear it, even while I'm feeling so bad for you for what you've lost.
Mark, we've all had awful days where we can't find anything to grab onto to keep our head above water. We are drowning in despair, pain, grief and seems easier to just let go and sink. But if we allow ourselves to look up, up toward the light we can find the strength to pull ourselves up.mark1,
You have to hang in there and don't give up. A couple of years ago, they didn't have half the medicines that they do now. Advances are being made. Plus, no matter how it feels, no matter how bad it gets, you still have some control over the situation. You may not be able change the fact that you have RA, but you can change how you relate to it.
RA compares to my having to live with being so short. I'm never going to change that no matter what I do. I wished and wished myself to grow. It didn't ever happen. Eventually, I've learned to love it.
Of course, that doesn't hurt. And usually, won't get you killed unless you forget to duck for tree branches like me because what tree would ever have limbs hanging that low.
RA hurts, sucks, obsolutely. The medicines are toxic. But the disease untreated is worse. Yeah, I think it's worse than cancer, but then I've never gone through cancer. But I'm sure it's better than HIV.
Get with a really good Rheumy, one that listens to you. Find out how you can get help paying for your medications. Go swimming, walking or bicycling whichever you can do. If you can't do any, have them put you in PT.
The one thing you have to do with RA is let you life change. It can never be what it was. But that is the path of life, change. If you can see it as a winding river, it helps. It becomes more of an adventure.
I hate seeing the doctors. I've gotten nothing but discouraging news for over 6 months now. The doctors look at my list of meds and say, "what I am supposed to do? What else can I give her?"
But I'm still trying for the same reasons other spoke about, people I love and people that love me. Maybe you are very isolated right now. Don't settle for that. Reach out to other who can understand what you are going through.
I hope you will come back, listen, talk, cry and laugh with the rest of us.
I will try
as for the docs I have no medicine really yet except for presidone amd a whole bunch of herbs and stuff like
MSM
glocasamine
chondrotin
Tumeric lots of it
Boswellia
Bromelin-- enzyme that helps inflamation
serraflyzme-- serraptose used in japan and germany
ohh and cherry drinks there is something in dark tart cherries that helps inflamation.
The reason i feel so dark and grim is I already had a round with chronic disease in uc and I pretty much beat colitis but now this?
and to have 2 of these things?
it is very very to much for me to bear... I am trying
I was hoping so bad to have a new career and enjoy life now I dont know......
I don't know if i can do this.....
Mark
Have you seen a rheumatologist Mark? If not, you need to.
UC is thought to be an auto-immune disease too and once you have one, many people get others.
And the medication does not kill you. There are many people on this board who have lived with these diseases longer than 10 years.
Mark
I understand what you are going through. Some people on here know that I had a head injury and my life changed for ever.
I hated the person that I became to be. I didn't have a choise in it. One day a succesfull person then I had to relearn a lot of things over.
I embrass my 16 yr old daughter all the time. She say I act like a little child this is because of my brain damage. I was in pain for two yr straight. I finally got over that to the best I will be. I got a job that they never thought I would. Then now RA on top of all this.
For the last 4 yrs all my daughter has seen is me in pain or laying on the couch. I just hate for her to have to see me like this.
Right now my stomach is hurts so bad from the meds I can't even think about doing what I need to.
I know that rest and range of motion helps.
You have to just keep looking a head. Don't look back. Enjoy what today has to offer.
I know days it look dark and you just can't see the light. But the light is there we just have to keep going to it.
Prayer and God is the only I could of made it through.
We are all here for each other.
Mark,
Mark, I am there with you. I get so angry on a regular basis and focus on what I have lost. You have to find things that you can enjoy now with ra. Who knows how long we will live but while we are here, appreciate every minute. That means you need pain control. Without pain control, I could not enjoy one minute of life. Try not to focus on the past. That is my worst enemy. Gets me seriously depressed every time. Find new things to enjoy and people. I love my family so I try to focus on them. Then I have a house full of pets and I focus on them. I come here so I do not feel so alone. Mark, you are right about how horrible this disease is but it is not the end of life. Life is a gift. Find out how you can live and still appreciate what you can do. Music, books, meet people, whatever. I was 48 when I got it and hard core athletic. I didn't think I could deal with it but I could never do that to my family. Some days I accept it well and some days I freak out. You have to work on focusing on positives and not the negatives and get your pain under control. Stick around, people here will always be here for you. We know what you are going through and you can always find someone that is worse off than you and appreciate what you can still do.
PS I do believe herbs can help you but you need to be sure they are not impairing the "traditional meds." You have a lot of options for what you choose to do to control your ra.
Hi Mark.
I'm sorry you feel so miserable. If you have been feeling like your posting consistantly for more than 2 weeks - I have another dx for you depression. It is worse than RA. Get help for it.
I have had RA for 30 years. I am 52. I know it can be miserable. The greatest challege in living sucessfully with RA is the emotional part of this disease.My anti depressant is the last drug I would give up.
PS I am not dead yet! I work full time. I drive a car. I can do all the ordinary things of self care. I can still walk!
I believe you will be saying the same things 30 years from now - when you are 70.
Very few of us have such an awful prognosis - honest.
thanks for the support and yea I know I am depressed gonna talk to the docs about it on the 29..
I need a new job however so life threw a new curve at me today..... I however hopefully wont lose my medical but not sure.... in a way this is a hiddin blessing about my job because it was at a hospital as a patient care tech and working with stroke victims and highly highly demented people.
I just kinda feel like losing a job is horrible but this job probably helped me get sick with ra.
I sure hope you are right when you all say that the meds will not kill you .... I want to live.
huggs for you all
mark
Mark, I lost my job as a park ranger which was a beloved position that I worked hard to get. It even paid well and I never had a day I didn't want to go work. If I think about it I get very depressed. We can't dwell on the past, we have to work on new identities that help us to appreciate life. I don't want to die, living is so much fun when the pain is controlled. Just a good conversation, a movie, or your favorite music make life worth living. I do not know how to deal with stress without exercise especially hiking, but I am working on it. We can go down this path together.The medications I take are strong. But I've been on them now for more than 12 years with very little problems. Admittedly I have moved to stronger and stronger medications as the disease has progressed; but early treatment is key here. If you wait too long to start; it will be too late. Once damage begins it can not be reversed. That's where a lot of the pain resides.
I've always been of the opinion that we could all die tomorrow. We could be in a car wreck....be hit by a bus....be struck by lightening. Don't put off what you could do today. Taking the medications can very much improve your quality of life. You're lucky. You're in your 40ty's. By the time I'm your age I will have already taken the meds for 20 years. At least you don't have that to contend with, right? You've got to find the sunny side in every situation.
I'm glad to hear that you sound a little better than you did when I read your post originally. Try to remember that once you start with a doctor and begin treatment; they will monotor your progress closely. That includes your medications. Most of the problems that arrise with these medications can be reversed once you stop the medications. It's very important to keep all your lab appointments.
Good Luck to you.
Mark~
This is a link to a free drug guide that is all about the different meds for arthritis.
http://www.arthritis.org/conditions/DrugGuide/index.asp
Mark,
I been thinking about you. I know it's really rough right now and changing careers, being sick, not knowing if you are going to be able to get medicines, etc. is very overwhelming.
Here's what I have done at certain times in my life. My daughter has always suffered from major depression. I've had to call the crisis lines to get help with her. I've even called them for myself. Some of the ones out here send a crisis team to your place and just talk out the situation. Then, they can help hook you up with services.
But just having someone to talk to about it can be very helpful.
One thing this disease cannot take from you is the knowledge you possess or your ability to care for other people. Those stay with you and in fact can grow.
You might consider contact your local Vocational Rehab center. They might can help change careers a bit so that you can work and find once again satisfaction in what you do.
Some people have gone to doing contract positions in nursing and it has helped them keep working longer. But nursing is a hard profession to handle with RA. Just the fact that there are 12 hours shifts and you can't stop once you get there are two really hard things to deal with. It sound very stressful physically and emotionally what you have been doing.
I sure other options will open up if you look for them.
If you do call a crisis number, please make it clear how depressed you are. They can get you help immediately.
You are strong. You just don't feel that way right now. But you still are.
Hi MArk
I also worked at the hospital as a MST some thing like what you did. Our unit at the hospital just closed down a couples a weeks ago so I now longer have a job either. I'm worry about insurnace to. Some one on here said if I get the cobra insurance they can not resume me insurnace when I get a new job.
I was afraid they would consider it pre-exsiting. I think the hospital don't help at least for me. I was aways having a cold or sick on my days off. Wasn't the way I wanted my days off to be in bed.
The 12 hours are long and when I was on my feet all day I would have a hard time walking.
Amercian disabilities act can help you with jobs and other things.
Denna is right about Vocational rehab. I have used them both. Look up rehabilitation services commission.
I'm looking also for new work not sure what I'm going to do yet. I need the insurance.
Good luck
1newBarb,
If you can maintain your COBRA insurance, then I believe that they cannot use pre-existing against you. You should be able to get your answers from the personnel department where you were working. They can get you set up with the COBRA and also answer your questions about pre-existing. Also, refer to the HIPPA act. It is supposed to help you transfer your insurance without losing pre-existing coverage.
Go to http://www.cobrainsurance.com/COBRA_Insurance_Links.htm for more info.
Barb, I agree with Deanna. You have to stay insured then they cannot call it a pre-existing condition. I have been through this. Get Cobra. I have. It is expensive but well worth it. One note - the insurance laws regarding preexisting coverage are applicable for group plans, so if you carry COBRA and then are hired by an employer that provides group health insurance for its employees, you are all set - you cannot be denied coverage due to a preexisting condition. HOWEVER, as my husband and I are unfortunate enough to know, this law does not apply if you are attempting to purchase health insurance as an individual. Insurance companies can and do hold very high standards for qualifying for insurance. If you're on your own, you do not have any laws protecting your right to be insured.I will get the cobra. Im not sure if I should keep the high one I have now or just get the basic. What do you guys think.
By the way Roxy did you ever get in the chat room.