Will I ever feel good again? | Arthritis Information

I am usually an optimistic person but I have been sick going on two years now and I am starting to wonder if I will ever be well again. Let's see, right now I have vasculitis, RA, raynauds, costochondritis, pleurisy, and oh, my favorite, another UTI which is not improving after 4 days of meds. Kind of feels like a sinus infection is coming on as well. I have been trying so hard to just keep going at work because I like my job and think eventually I will get better but it just never happens. I had meetings until 6 pm today and am totally exhausted. They have been so good to me there, I don't want to let them down either. My sed rate was 80 a while back and I don't know what it is now. But last time I went to the dr. he checked the lab work and said it was still high. So after 2 years of this, is there any realistic hope of getting any better? Sorry to be such a downer-I am just so tired of trying so hard to keep going but I don't want to give up either.

Laker

Awww geeee Laker I am so sorry. This stuff is the pits and I sure hope that you feel better real soon.Yes, you will feel good again.

Laker, you don't say what meds you're on and why multiple UTI's in such a short time. Have you been evaluated by a specialist for bladder/kidney diseases? I don't want to appear nosey but it's unusual to have UTI's that close together.

I've been in a flare for about 4 years and have developed multiple, incidental complications related to RA/OA/PA and the meds that I've been on. I understand thoroughly your frustration.

There's always hope. That's all any of us have is hope. Hope that the disease goes into remission or that they find a cure.

I eventually gave up my career because I couldn't walk and the pain and swelling were so bad. I spent a year reducing my time at work by an hour a day here and an hour a day the following month. I finally realized I was working a 4 hour day and wasn't getting any better. I was lucky that I could resign and devote my time to getting thru the flare from hell; then I developed a pulmonary embolism due to inactivity. Go figure. But 4 years later I'm through the worst of it...I hope, but due to the damage from the last four years I now have to have bilateral total knee replacements. I'll have the first one done in June. But at least now I can walk (granted it's with a pronounced limp) and the swelling is 95% better and the pain is 60% better. So yes, I can say it will get better and there is always hope.

LinB39197.7479282407Laker, that's just the pits! I felt just about the same as you, until I made the difficult decision to give up full time work. Well, actually, the Doc put me off for 3 - 6 months rest, and after about 4 months I started to feel more like my old self, optimistic and forward looking.

I am now doing some part time work, not stressful at all - no big responsibilities. Just a little, a couple of hrs a week, (I am on an Invalid's benefit, so can earn a little - helps with the bills - keeps my mind alert). I'm tempted sometimes to do more, but have decided to stay with the status quo for now cos I feel sooo much better. Too scared to rock the boat I think.

Is is possible that you could take a break from your job for a while? The stress of keeping up with a responsible job certainly takes it's toll, stresswise and energy wise.

Hope that you feel better soon - you have a lot going on!!
Kiwilass has a good suggestion in taking some time off of work. I did that a couple of times and it enabled me to return for quite some time. I finally quit working completely in August. Taking FMLA or Short Term Disability might work out for you. Be sure to check what your options are.

There are times when it gets really bad and other times when I perk back up. This year has had a lot of bad. And, you know that with the Vasculitis that you are going to get more complications. The longer you have RA, the chances of complications can also increase because it does take a toil on our lives.

But the one thing you also get is smarter with dealing with all of this. You let go of unimportant things. You decide how to rearrange your life so that you life it better. Not working is hard on me, financially and mentally. But on the other hand, I am learning to enjoy sitting part of the day on the porch. Going to the movie in the middle of the afternoon. Talking on the phone to friends and family because I'm no longer trying to do 5 million things at once. I invest my energies in being a listening ear to others and they seem to think that's worth something. I know that makes me feel better even on the days my body feels the worst.

You, yourself, have made me feel better lately and I thank you for that.
Yep - you're so right Deanna - there's a lot to be said for sitting in the sun, and being able to direct your own timetable and please yourself.

I think of it this way - I am 62 years old, have worked since I was 15. I married and raised 2 chn, stopped working when I was pregnant with the first, and then returned to work when the youngest went to school. Then worked right up until the beginning of last November when it all went to pot!!

That's 42 years of working to someone else's agenda, contributing to my community, paying my taxes etc etc. I think that's enough! Oh, I enjoyed it all, without a doubt, did lots of interesting things and met lots of wonderful people.

And then I think of all the things that my Mum and Dad were going to do when they retired (60 in NZ at that time but 65 now). My Dad died of Motor Neurone Disease when he was 61. This was also a factor in me deciding to finish the full time stuff altogether. I have no way of knowing where this RA is taking me, and while I am able to get about and do the things that I enjoy without too many problems apart from the occasional hiccup- I'm certainly up for that! I spend time with family and friends, sewing a little, garden a little, and my mental challenges come from this danged computer and my Family History Research. So - all is good.

Deanna, I really hope that you can get some answers soon for your own stuff, and Laker, you take it easy!!

Laker,

I love my job! And being unmarried no kids - it is beyond meaningful to me - it is my identity.

however....

I have been out of work on sick leave (short term disability - 60% of my base pay) about 7 weeks now (officially DXed about a month ago) and have been told my rheumy that we will not even be reviewing me going back to work for at least another month or two at this point...

My company provides a total of 26 weeks short term disability paid like this and protects my position for as long if necessary. This wasn't a difficult decision for me, because it wasn't even one in my hands (hahaha - so to speak - hahaha) as I had become so incompacitated at that point, that what I thought was just going to be taking a FEW planned days off to get better turned into this...

In looking back though, I really had been doing neither myself or my company much of a favor over the past 6 months. As hard as I was trying, I just wasn't performing at the same level but I was working myself to death trying to do so which was probably worsening my condition.

I am rambling. Sorry. Guess what I am trying to say is just that I feel for you and understand where you are coming from as far as what you get from your job and wanting to do right by your employer etc. etc., but that I (you - whoever) are going to have to take care of ourselves in order to care for/contribute to others (in whatever capacity)....

Can you explore what, if any, options are available to you with your company/doctor like short term disability etc. so that you can get some time to regroup? I didn't know these kind of benefits were available to me btw. Had never given it a thought....

Best of luck!

Melly

Thank you all for the suggestions. I did just qualify for FMLA. I have been using it for my medical appts which are 3 hours away so they basically take a whole day. I did take some sick time this week but I have already used a lot of that this year. I know I need some time off but I'm not sure its possible. My job is unique in the company. No one else knows how to do it and it is complex. Also, we have just had a reorganization and change in our business strategy which greatly increases my work load. This will either be a great opportunity or it will kill the job for me. I am too tired to think about it right now.

Went to the dr. again today for the uti and she seems worried. She is doing a culture and said she will check on it sat. and call me as soon as she gets the results. I have had cultures before though and they have never been helpful. I know they are checking for kidney problems in my regular lab work too so it seems if something is wrong with that I would have heard. Oh well. Drinking lots of water and going to bed ASAP!

Laker