I've only just come to accept I have a chronic illness

Hi! New member here. I am actually here just looking for other people in my situation. As my situation progresses I am discovering that friends, family and co-workers (and especially employers) do not understand at all. The rollercoaster of pain to doctors to treaments to resultant illness (immunosupressive drugs rock!) wear on outsiders' patience, especially when I appear to be healthy on the outside. Arthritis and the treatment of it has already ruined parts of my life and is currently wearing hard on me, my family, and my job.

I am 35 years old, and my arthritis has a long history, but actually only diagnosed this past September (2005). Long story but for some reason all the doctors ruled out arthritis for various reasons despite obvious (in hindsight) symptoms and family history (a grandfather and aunt with rheumatoid arthritis). My knees have bothered me since age 20 and I had been to a few knee specialists (also mentioned but eventually ruled out arthritis), but when the pain started to affect my feet it was my podiatrist who eventually got me on track to a rheumatologist. Before my appointment (several month wait - of course) it spread to my ankles, hips, back, shoulders and elbows. The rheumatologist was stunningly competent and diagnosed me instantly and put me on treatment right away. Methotrexate, Prednisone, Lodine, folic acid. It is being treated as rheumatoid, but the official diagnosis is osteo-arthritis as the rheumatoid test was negative, but I have one toe that is misshapen now (happened after the arthritis hit my feet). My knee swelled about 2 weeks before that first appointment, and at this point I'm an old pro at the aspiration process... The medication started to work right away and I've been getting better ever since - that is, the arthritis has been getting better. But, after a few months I started getting sick all the time. Any time someone with the sniffles walks past me I end up with a respiratory or ear infection that lasts for weeks. My new employers are starting to give me the evil eye what with six illnesses in 5 months. I won't even go into what the old employers thought of me and my arthritis.

Hope to mingle here with people who understand. I've only just come to accept I have a chronic illness that is going to probably continue to mess things up. Perhaps I can help some others with what I have been through as well...

Ahh, the weight gain with Prednisone.  I was worried about this at first but I managed to actully lose six pounds despite taking Prednisone for 9 months!  I noticed I felt hungry all the time even if I had eaten recently, but it didn't actually quite feel like 'real' hunger - it was like hunger without the emptiness or something.  It took some will power but I forced myself not to eat more than usual.  Later on I think the consecutive illnesses conspired to keep my weight down! 

Gosh, is Prednisone nasty or what though?  At first I thought it was a miracle drug until the illnesses started.  Each time the doctor would reduce my doseage the pain would spike back for a few weeks.  When I went off it at the end of June the pain spiked really bad and I almost called the doctor.  The only thing that kept me from calling her was the vision of injectable methotrexate in my future (I'm still on 8 x 2.5mg pills now)! 

It seemed to me that as the methotrexate built up the prednisone became less and less necessary (to me). It was disconcerting though to have the spikes in pain each time the prednisone dosage was cut, and when I went off it altogether the pain spike was really bad. I was determined to get off the prednisone though.

The doctor told me the illnesses should lessen now that I am off the severely immunosupressive prednisone. I am actually sick right now and have been for three days and it hasn't been as bad as the previous illnesses (last one was last month and it was bad - double ear infection and respiratory infection lasting several weeks), so I am hopeful. If I can reach a level where the pain is tolerable and the illnesses aren't too bad, I will be happy.

Pain is so relative now though. I remember when I first started the prednisone. I felt like I was cured three days later, only to realize a few days after that I was in fact still in pain but even just the small amount of relief felt awesome and wonderful. The pain levels dropped like this over a period of a few months, and each time it would feel like the pain was gone and only later I would realize I was just 'used to the pain' so to speak. It is funny how pain wears on you at the same time it makes you really tough

Gosh all of that does indeed sound familiar! My old job was ridiculous. The new place where I work is ok but I'm getting the evil eye what with the 'new guy' being sick so much. Several of my illnesses were over the weekend so they don't even know the half of it (and I have to get the evil eye from the wife at home too). I was sick last week as I wrote above, was better by Sunday, and am now getting sick yet again. Or perhaps I didn't get rid of what I had. I don't know. At least I am coughing and sound congested, unlike when I just had the bad arthritis pain and I had no outward symptoms other than slow movement (translates to 'unmotivated' at work) and wincing (translates to 'faking' or 'acting' at work) and my favorite - malaise (translates to 'lazy' at work and at home!).

Oh, and your signature that says 'Ibuprofin' made me chuckle. The foot doctor put me on this before I was diagnosed. I was up to 2400mg per day and all it would do is take the sharp edge off the pain. After reading your signature I feel lucky that I haven't had many side effects with the drugs (other than the weak immune system) - I mean, I was able to tolerate the pred and the methotrexate and even the Lodine and Ibuprofin never hurt my stomach or anything. I suppose it could be worse, but I really hate to think about that considering how bad the pain got last year...

Erin!

You have Felty's!

Tell me your story and Ill share mine when youre done!This is great! Not really, lol, but, I feel like a lost child out here. Some of my Dr.'s have never even dealt with it.(Felty's)-My hemotologist)Do you go to one for your blood counts? How low have you been? How are your neutrophils and Lymphocytes? My spleen was enlarged a few years back when my counts were outrageously low, when I lost my job, and was forced to quit.

Cant wait to hear back from you!

Thanks everyone so much for the support. Wished I could have found this years ago.

Cheryl

My white blood cell count/RBC stayed just below normal my first few years of DX, then plummeted after my Doc. said I was in remission and took me off Metho. and prednisone. Slowly for the next year(2001) my counts slipped and I had no idea. Thats the time I started my dream job at the hospital and my white counts plummeted to 600-900. Neutrophils low/enlarged spleen, even times of constant fever. I missed work all the time then because I couldnt be around sick people. After I quit in Oct. 2003, they started to rise again. (go figure) I read Metho.suppresses so bad, I figured thats what did it for those few years. Then I was on Enbrel, not any help, then Humira, which I just had to go off of, due to poss. allergies. Im only on 25 mg Pred and Vicotin for pain. Im going to U. of Iowa clinics in the next few weeks to see about poss. new drugs. Im like you, dont think about it much, I live a very normal life, unless the pain/fatigue is bad. I have 3 sons and when I can- I play tennis, camp, ride bikes with them and I have became more overweight also, but am still as active as I can be. Some say its denial, no, I know when to rest/I just love life. My neutriphils are a little high now and my lymphocytes are low. They say thats the pred. I just saw my hemotologist last month and I dont have to go back for 2 years unless my counts relapse again. Have you had many infections? Fever? Do you work?  Can I ask how old you are? and when you were DX? Thanks for talking.

Cheryl

Rant time again:

Well, I've been sick two more times since the last post, and the evil eye is getting worse from the employers. They told us in a meeting a few months ago we didn't have to speak to anyone if we had to call in, but just leave a message. So, I sent several emails to people Monday morning when I woke up with my throat hurting (email was sent because it hurt to talk) and got replies to the emails. Then the next day when I went in the supervisor reminded me I needed to call and actually speak with someone and then "reviewed" the leave policy with me and had me sign it again. I don't think they actually expected me to read the policy, but I did and it didn't say anywhere that an employee has to call and actually speak to someone.

There have been several other nigling things they've started doing here and there that are counterproductive and not in keeping with how the other employees are treated (for example they asked me to work overtime, and then they flipped out when I worked 11 hours overtime - don't ask me to work overtime if you don't mean it!). This is terrible because my attitude at work has always been to try to do the best job I can and come in as much as I can.

So, I've decided to quit. I'm going to tell them in a few days that I'm leaving at the end of the year. I'm going to try to do my own thing with real estate. I did it part time a few years ago and had tons of success, but was scared to switch over to commission only income. I will be done with the required education to reactiveate my license on December 14th, and I already have two customers lined up that are definites.

I mean, sometimes at my current job and at my last job too I would completely bust my butt and just do ridiculous amounts of work and in the end all I got was chided for missing a few days here and there. So, I'm going to bust my butt for myself and see how that works out! I'm going to turn this negative bs I've been dealing with into positive energy!!!