I just wanted to update and kind of conitinue the thread for"Flare in Eyes" here...Although it may not be my "place" to do so...I did want to thank Josh for the kind wishes toward me and the thread had gotten so complicated there that I could not see a place to interject that Josh would not miss seeing.
I am hoping this will be my last day in the hospital (well it will really be tomorrow that holds that "distinction") if all goes well. I still have quite a bit of congestion. Still some wheezing but it is definitely improved over how it was when I was admitted. When I get up, especially when I do not use my O2 I do cough quite a ragged cough.
My biggest complaint now is the fact that my eyes are SO SO blurry. I know I must be making typos but I can't see them...I 'm really typing blind. I think this is largely an effect of the steroids. Although I had blurriness before the steroids also.
I heard a rumor via the doctor here who told me that the specialist docs are considering putting me on standing steroids rather than doing a taper. I really want to discuss this move with the eye doc as I'm not sure how that will "jive" with possible glaucoma. Obviously I need to get that diagnosis confrimed or denied before finding out how it will mix with steroids. And the Rheumy will have to be consulted in that regard also. For all I know it may be one of the treatment options that will be considered. If they do that I'm probably goign to have to get another pair of close up glasses to wear...I already have close up lenses with prisms in them to treat my double vision and farsigntedness. I also have nearsightedness but can probably get away without replaceing those lenses
It becomes such a medical modpodge doesn't it...when you are dealing with 3-4 diagnoses...and trying to treat them without making the others worse.
I do have to say I'm quite nervous about my respiratory status, whether or not I will make it even out to the car, right now would be impossible. I think I'm definitely going to need to use my rollator walker at home....and possibly use a bit of my O2 tank while at home untill I adjust. Or maybe will just have to stay in my room on the O2 concentrator in there. Oh my. I thought I was limited before...Now it looks like a whole different story..
It sounds like it's not a bad thing to be in there at least another full day. I completely understand wanting to leave, but it sounds like you're not quite stable enough. I'm so sorry about all of this. It's a lot to deal with, and you are right to be worried about ongoing steroid use, for quite a few reasons. Let us know what winds up happening. Will they send an eye specialist (or can you request one)? This way you can ensure that everyone is on the same page, and one treatment doesn't wind up destroying another body part.
I do have all the docs in place. Getting them to coverse may be challenging....At the very least I plan on collecting opinions.--If any of you have any ideas of questions I might need to present to these doctors, I would appreciate your sharing them with me ...I have already begun a list oftem for the eye doctor. Both my rheumiy and the eye doc are very silent during their examinations. The rhuemy mutters things like "This is very bad. This is terrible" He does seem to listen to what I say but he is limited on what he shares with me. The eye doc did many tests all wihtout explanation. Seemed ot be very thorough and in the end shared his suspicians with me. I had a rheumy in NYC that was very different from these men Ihave now ...but I had to stop seeing him due to the expense of the trip and also the fact that I can no longer drive and my friend who was driving me could no longer do it. So I miss him and am trying to get along with the docsI have....mostly because I'd been to four or five other docs in this area and not one of them wouldtae the brave step of putting me on a biologic due to my horrific history of infection. I hadan infectious disease doctor who recently moved to practice in Florida. He told me that he anticipates that I will die of sepsis if I were to pursue the biologics...but when I asked him what HE would do it he was me...and he said he would do the same thing I am doing. He said that after speaking to my Rheumy in Manhattan who tried to convey to my doctors up here what my future holds unless we can slow o arrest these diseases. the Manhattan doc told me that my medical team up here has no idea of the severity of my illness. But I do think that my GP who is also my Pulmonoligst is starting to get a clue and the new rheumy certainly knows what I'm up against. So I think things are improving in that regard....Now I just need to get some questions answered and make some decsions about mediation and treatments and I shoild be good to go... sounds easy , right?
Keep good records if you can as well. I don't know if your family is able to be with you while you are in the hospital and/or visiting doctors, but you may want to consider bringing a friend to your more important appointments, to help remember information, ask questions, provide a different viewpoint, and of course, for support.
That's a big trip you were making to NYC. Nothing closer to you in terms of major medical centers?
the only other major medical center is the one that my husband works for...so by necessity we have to get all medical work done here in house.I am allowed ot see other docs that accept Cigna but the hospital makes it hard...I have to get all blood work and xrays and MRIs and such done at our facility. And any surgery or anything involving admission, an outside doc is not permitted to be part of the "show"...So I just figure I have to take what I have...Most of these docs Ihave come out of major medical centers in NYC for their training and many still work there certain days of the week