Limit reached...

I think I've reached my limit.  I'm just worn out.  Pred is at 25mg and man can I feel it.  Had pt today and she was very concerned.  I have keratitis in one eye and uveitis in the other-seriously, who does that happen to?  Chest is super tight and I've been using my inhaler.  It's definitely the right lung causing the problem which is where the intersticial lung disease is evident.  Still relying on the nj tube cause the stomach is a mess.  Now the right knee has decided to get in the act.  It's been an issue for yrs and needs to be replaced.  I'm just not healthy enough for a non emergency surgery.  But it's bad.  I can feel my heartbeat in it and it keeps me up at night.  Rt leg is swollen from the middle of the shin up to above the kneecap.  PT measured it and it's an inch larger in diameter than the the other leg.  My rheumy is concerned so he asked my pain managment dr to take a look since I see him monthly.  He'll be able to see how things have progressed.  I see him Tues and then go down to Duke for Cytoxan at the end of the week.  RD is still thinking of adding a daily injectible med but wants to see how my counts rebound from this next infusion.  Of course, if the lungs get worse or the heart wants to play, we'll have to go back up on the steroids.  And, of course, the jaw hurts.  

Really, I just hurt from head to toe. I'm so tired of hurting-Aren't we all?
Well, that was pretty pathetic...

The only positive is that I am sitting next to our decorated tree.  Little guy and I had a good time putting it up and watching Elf.  He totally believes in Santa and has been anxiously searching the house for our Elf on the Shelf.  He'll be making his appearance tomorrow am.  I bought a train set last year on clearance after the holidays.  I set it up around the tree after little guy went to sleep.  I can't wait for him to wake up tomorrow and find Elfie(the elf) riding the train around the tree :)

 

Gosh, so sorry to hear you are going through this. It sure is a lot for one person to take on. Just remember we are all here to listen and support you. I hope you will feel a little better soon.

I just dont know alot about most of the conditions alot ppl suffer with but im learning, and I wanted to say that Im really proud of you with all the pain and illness that you are suffering with so much rocckyd, you managed to make the little guy puff up with happyness!!! Thats awesome!!

My well wishes are pouring out to you!!!

Oh Rocckyd, I can SO relate to what you are saying! Over the past few months, it seems like every few days a new pain or issue appears in my body that makes me say (usually out loud), "You have GOT to be kidding!" I have my usual 'go to' pains associated with my ARD and cervical/lumbar stenosis and DDD (and whatever else is going on in there now). And now, over the past few months, I'm getting some pretty serious pain in both of my knees - first in my left and then a few weeks later, my right. I've had surgery on both, but have not had any real issues with them in years. Then one morning I woke up and my right arm/shoulder was aching something fierce and now IT hurts ALL the time. Another morning I woke up to both of my thumbs hurting - thumbs, really? I mean come on, what on earth would make someone's THUMBS hurt? And of course then I keep getting episodes of god-awful pain in my jaw from a broken molar. THAT'S always good for a few laughs! Not. Oh yeah, I also keep getting this WAY intense itch on one specific, small area on the ball of my right foot, in the crease below my big toe. Don't ask me - not a clue! Hmm, lets see what else. Oh, I recently noticed that when I bend my head forward towards my chest, the front of both thighs get a 'numby, tingly' feeling (the only way I can think to describe it!). There's more, but I'm afraid if I keep writing about it, yet another part of my body will feel left out and begin hurting, aching, stinging, itching, throbbing, swelling, or going numb.

Anyway, my point is......I understand.

Post Edited (Splashdancer) : 12/1/2012 9:16:29 PM (GMT-7)

Had my pain management workin appointment today. I had been scheduled to see the PA but saw my dr instead. He agrees that things are going downhill. His biggest concern was the lungs. He heard decreased breath sounds on the right side, but my oxygen levels were pretty good. Lungs will need to be watched closely and they may be the reason we up the pred. He looked back over records and he doesn't have me at 25mg or less within the last 7yrs. There are numerous years where I was at 60mg+. So, I want to do everything possible to stay at this level.

As usual I was tachy at 147. While that much lower than the pulse of 160 that landed me inpatient for a week, it's still not great. Joints are red and hot and the jaw opening was measured at 10mm. So-things are great. We had a long talk about pain meds. I really didn't want to increase anything, but he isn't happy with the pulse and bp. I was hoping for another round of botox and trigeminal nerve blocks for the jaw and cortisone injections down thru the sternum to help with the rib inflammation. He wants to hold off on those until I return from my next around of appointments down at Durham. We decided to add Opana back into the mix. I've been on this before a few yrs ago. Keeping the Oxycodone at 15mg with 20mg of Baclofen and 100mg of Amitriptyline.

Only real change was the return of the Opana ER. Dr was super supportive and actually told me how proud is he of me. Kinda felt like I was talking to my parents :) He knows that things have been really rough-especially in regards to the TMJ replacements. So much structural damage had already occured due to the bones fusing. In addition to the condyles being removed on each side, much of the bone on other parts of the skull had to be "shaved" and "shaped" as well. I've also had the coronoid process removed on each side. So, while we've been able to preserve some function(yay 10mm), but the nerve damage and bone pain is going to be pretty severe. My surgeon and the creator of the joint have been in contact and, for now, most of the complications are considered to be due to systemic issues and not the replacements or the surgery. It's one of those-we've never dealt with this before. I'm sure many of you have heard this phrase as well. Anyway-my PM said he will support me however necessary and to call at any time. He's a good guy.

Now off to Duke. My son has already picked out the VT shirts for me to wear. He's a little Hokie and hates Duke. Other then when it comes to medical care, I feel the same :) His plan is to go to VT and study soccer and then due some science on the weekends. Good to have a dream.

Thanks :)

I think much of my frustration stems from the fact that I've had this stuff going on since grade school. For the most part I've just kept on pushing and I've been able to do almost everything I've wanted. Then, when things start to go downhill, I feel like I've somehow let my guard down and allowed things to get out of control. These past 2yrs have been really hard since I had to quit teaching biology. I really miss the kids :(

Hi,

I had posted to you earlier, but somehow it went away ....... Probably because I forgot to hit send.

Anyway, I wanted to express how sorry I am for you having to go through all of this. I don't have any words of wisdom, but we are all here for you.

Have a wonderful Christmas with the little one!