finally a short hospital stay-woot woot!

Home after spending a few days in the big house. This was one of my longest stretches of freedom-9 weeks!

I began feeling really short of breath, tired, and increased bone pain-especially in my jaw. Unfortunately, as usual, there is little that can be done for the long term. Blood work came back with super low potassium and non existent iron levels-pretty much an empty tank. My O2 stats were also low which wasn't really a surprise.

Thankfully this was a pretty short visit. I had 3 days of iron infusions so now I'm all tanked up :) This also allowed my O2 level to rise, but still not at my base line. Next week I see my pulmonologist for PFTs, but I'm also splinting when I breathe due to inflammation across my sternum. This is causing a slight lung collapse in my lower lobes. Where my ribs meet my sternum is bright red(looks like my third boob). My pain Dr stopped by and I'll see him to get cortisone injections in the spaces where the ribs/sternum meet. I'm also going to have another heart cath to double check pressures.

Bone pain was off the charts when first in ER and admitted, joints too, but really the bones themselves. This is concerning my medical posse. The only scan I done while inpatient was the jaw. Turns out I have heterotrophic bone yet again growing along the tendons. I'll head up to MCV/Richmond and see what the surgeon recommends. When I've had sepsis in the past, the one debilitating symptom has been the deep bone pain. Nothing has grown on cultures, but I was discharged on antibiotics. Leveling out the iron levels helped with the pain, as well.

Hoping I can keep my pain meds at my normal level until I get the sternum injections. The bone growth along the tendons will need to be removed, but hopefully that surgery can be put off a bit longer. March '14 I and 4in removed on either side of my skull and it was a hard recovery. I really am not looking forward to that any time soon.

SO-not happy about the inpatient stay, but I'm glad it was a pretty short one.
Now if you guys could just cross your fingers for me these next few days. Little man and I are going out of town with friends for the next few days. I don't have to drive and we're not doing anything strenuous, but I just want us to have some fun this spring break.

Thanks for reading my latest saga :)

rocckyd got my fingers and toes crossed for you! Hope you have a GREAT time the next few days, on your outing with your son and friends! Will continue to keep you in my prayers!

White Beard

Had a slight hiccup already, but hopefully that will be it. I took Nathan to see the movie "Home" and had to close my eyes for a few scenes. The light was just to bright and it felt like an icepick was digging into my left eye. I just finished taking PredForte due to an iritis flare-up. I guess it's not willing to leave the party. Luckily my eye clinic has after-hours by appointment. Unfortunately, or fortunately, I'm there so often I only have to walk in the door. I had hoped I would only have to call and my Dr would just call in a new script, but he likes to check things out since I'm a mess.

Apparently, the eyes are awful-much worse than before :( I've had Sjrogren's since my JRA diagnosis so that doesn't help matters. I've mentioned before the steps we've taken to maintain some sort of moisture-punctal plugs(first temp and then permanent), every drop, gel, cream known to man, and scleral lenses. I was hoping this was just another Sjrogren's flair, but it Uveitis again. Dr and I are both frustrated since this is a direct result of the autoimmune process. I also have tears(not boo-hoo tears/ripping paper tears) across my corneas. For now I'm using bandage contacts which are placed by the Dr and removed at my next appointment next Tues. These provide pain relief and will hopefully protect the corneas while they heal.

So-I'm ok with one bumping the road for now, but hoping anything else stays this minor. We are going to a Great Wolf Lodge with his best soccer buddy and family. I don't have to drive and get to spend the next few days in a lounge chair while the boys zoom around the indoor water park.

Feel free to say "I told you so", and "what were you thinking", when I complain about pain or medical issues next week.

Ugh-I can never go to sleep the night before a trip-don't know why, it's always been this way. My friends always laugh and say I get the most work done in my house between 1-4am the night before we go out of town. Luckily I can dim my laptop screen so it doesn't mess with my wonky eyeballs.

 

    GOOD STUFF! 

 

Hugs~Dixie