What is my purpose in life?

Written by

Sat, June 13, 2009

Additional Posts

I'm 22, a senior attending Penn State University, and I'll be graduating this December. I just spent the past three months in Shanghai, China studying abroad. While I was in Shanghai I noticed that some of my joints, actually a lot of my joints, were hurting. A lot. It got so bad I couldn't even take notes during my morning class because I couldn't even hold my pencil. After a month of doctors visits, they finally confirmed that I had rheumatoid arthritis. Not exactly the type of souvenir I was expecting to bring home.

I read that it is important to maintain a good relationship with a rheumatologist. I'm kind of at a lost because the doctors I saw are in Shanghai. The specialist was a friend of the family, so he prescribed my treatment. I'm supposed to take the medications for 4 years. I'm currently taking Methotrexate, Celecoxib, Leflunomide, and some type of rabeprazole sodium enteric-coated tablets. However, I don't really understand Chinese, so besides my own research, I have no idea if these medications are right for me. In addition, I can't talk to my doctor because 1) he's in China 2) I don't really speak chinese well enough to understand medical terms. The reason I'm doing things this way is because I do not have medical insurance, and it is just cheaper to buy half year supply of medication from China and ship it out to me.

I think I'm still in denial. I couldn't possibly have a chronic illness. I don't want to deal with it. When I think that I could have to deal with this pain for the rest of my life, I get so overwhelmed. Just the other I was woken up by sharp pains in one finger. One finger.

Currently, I'm having trouble making a fist. When I think that I could lost functionality in my hands, I get scared. How am I suppose to work in the future? What kind of career am I suppose to find with RA? I'm supposed to be worrying about interviews and career fairs right now, but instead I'm dealing with just trying to wake up without feeling a lot of pain. What is my purpose in life now that I'm "broken"?

Comments (10) | Add comment

Notify me when there are new comments

Sparky22

6/14/09 5:31am

Please don't think you're "broken"! I really thought that too when I was first diagnosed. I hate this disease and was doing well at first with prednisone and methotrexate. It stopped working and I'm getting ready to try Enbrel. I still keep hoping, every morning, that this is just going to go away. So much for wishful thinking. But I do believe a positive attitude really helps!!

Angela53510

6/15/09 12:24pm

Yes, this is a serious, painful disabling disease. But you are very lucky - you have been diagnosed early, and can stop severe damage before it destroys you. I have had RA for 10 years, and been on methx 9 years and Kineret for 4. My worst damage was done in the first year, before I had a diagnosis and knew about "joint protection". Since I got on the Kineret, I am able to exercise, to garden, play flute. If you catch it early, you won't have to quit work - you can go on living your life well.

My advice is that if the drugs that the Chinese doctors gave you work, there is no pain, then continue. If you are getting lots of pain and flares, you need to try something else, esp. a biologic combined with methx. It sounds like you are taking your meds orally - that is a recipe for severe stomach problems. I had 4 stomach ulcers, till I starting injecting the methx, and got off the prednisone. It has taken years, but my stomach is improving.

You should contact the Arthritis Society or Foundation or whatever it is in the US, and get some advice. Find a Chinese doctor who is fluent in English and Chinese, and get him to translate what you are taking, and advise you the side effects and whether it is a good strategy to limit damage and pain.

Finally, I understand that there are many drug companies in the US that will give you free biologics, if you write and explain your situation. From what I understand of the HMO's unless Obama makes some drastic changes, you will never get health care insurance with your diagnosis. Or at huge, huge cost.

A last alternative is to immigrate to Canada. Every province except BC has free, unlimited health care. (yes, sometimes you have to wait a while. LOL!)There are also provincial drug programs, that for a minimal amount cover the costs of drugs. I pay $81 a month to my plan (that just doubled this month), and it pays all but $25 of my Kineret (cost -$1500 monthly), and all the rest of our family drugs. I am up to $18,000 for this fiscal year, and they keep warning me not to go over the $25,000 cap by the end of June. I won't so I am not worried.

Please do not sit at home, suffering and getting depressed. I have a cousin who has had severe RA for 55 years (she is 56). She is totally crippled, but she finished a M.A. and was a sessional instructor at our local university. She is highly involved in our comunity, including teaching doctors the effects of Rheumatoid. Even severe disability shouldn't stop you from living a full and productive life. But you shouldn't even have to go that route. The drugs today are wonderful. Get help immediately! Medicaid, whatever it takes. You are worth it.

Angie

YellowRose22

6/15/09 2:46pm

Please explain more about the drug programs... This can be very helpful to those of us without insurance.

Thanks

Laurie

Angela53510

6/15/09 3:09pm

I am not an American, so I am not totally familiar with the protocols and qualifications. But I have read on many websites for RA about this. Perhaps someone else with experience could comment on this??

Angie

cindy

6/16/09 11:06pm

I have been on this RA road for over eight years now and still haven't found the right combination of drugs. I am on my third biologic and unsure if it is gointo work. I am 50 so I have had the opportunity to work with the disease. It is hard, but you can find jobs that work for you. Just this past year I threw in the towel and I am now receiving disability. it is a hard adjustment, not working. What so many people don't talk about or don't know is that you may be lucky enough to qualify for disability, (I got it on my first attempt and I didn't use a lawyer). The problem is that you get a monthly check yet you don't qualify for medeicare or medical services for 2 years. This is the stupidist thing, in my opinion, that the government could do. Huh, you are considered totally disabled and that probably means that you have medical concerns and needs yet we won't give you any assistance with your medical needs. In the meanwhile you spend all your savings, risk loosing your home, just to receive medical care. All this while your income just went down considerably. And like another person commented. You will NOT qualify for any medical insurance programs due to your diagnosis. I have even tried to qualify for the state's risk pool which is suppose to be a last resort insurance program, but RA disqualifies you. I hope this helps others to understand that getting disability checks isn't any more than a bandage for the services we need. We need to collectively find a way to fight this or we all might find ourselves loosing our homes or using our life savings jut trying to get minimal health care for our CHRONIC disease.

Cindy

hugs

6/18/09 10:30am

please dont give up you to young Ive been dealing with this for the past 6 years I am 55 I work at a college cafateria and believe me it is so painfull at times I dont want to get out of bed but if I dont work I wont have med insurence .I relly think you need to get a doctor in the usa and let them get your meds figured out because It sounds like what your on isnt doing any good I also have lupus on top of ra and I swell up anywere on my body and it would be a blink of an eye and i swell up without notice(except the pain of course) but I have to just keep doing what Im doing day by day and let the pain take its course I found that the more I keep my body in motion it helps relieve the pain some but as soon as I sit for awhile it comes back so all I can do is hope each day is better than the last so please find a doctor and get you meds in order Im sure the state you live in has some kind of insurence for low income please check all this out and dont give up

kiteclimbers

6/18/09 3:43pm

For some with with RA it does go into remission, I know because I'm one of them. now 7 marathons later Ra did change me, but for the better. With so little known about RA there is always hope. I remember my hands felt like they were frost bitten I couldn't make a fist, to put my socks on I had to put the socks on the carpet floor and push my foot into the sock, and I couldn't tie my work boots so I would use rubber bands around the loops. Keep fighting and be strong on this new journey and remember you are in control of how RA affects you.

Anonymous

6/19/09 12:49am

I am a 62 year old male, have had RA since high school, and am retired from a successful career. You Can Do This!! May I direct you to the following link...

http://www.healthcentral.com/rheumatoid-arthritis/c/80106/75061/guide

You will find many other helpful articles on this site. I especially appreciated a recent one which confirmed that some of the older tried and true - and less expensive - remedies (Methotrexate, Naproxen, Prednisone) are more effective than the new biologics.

I wish you the very best!

Michael

patty

6/19/09 8:18am

My clinic has a program to help with my doctor visits only. You may want to check out doctors in your area and ask if the doctor has some way of helping with bills. When you find a clinic you may find help with coping.

Take care

Anonymous

6/19/09 10:22am

I was diagnosed with RA my sophomore year in college. I never thought I would have to worry about a chronic illness at my age but such is life... I been on several different kinds of medications. Right now I'm taking plaquneil, methotrexate and enbrel. It seems to be working for now.

What is my purpose in life?

Additional Posts

Ask a Question