Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 Jeri, Thank you so very much for sharing this. I feel it is important to document these kinds of progressions for several reasons, and, I being a now mostly selfish mostly bed-ridden soldier in the same army, I am entranced to see both the emergent hospital experience and the frightening progression and the questions it brings through the eyes of the spouse and in a situation that shares some aspects of what I have been through and also what I've been spared. There is a better reason, though, than my personal gain -- I think you have done the most empowering thing you can do in this situation -- document it all. And the lovely thing that just dawned on me today, as my husband was yelling at me (not in anger -- he had been using a wood chipper all day and had to yell just to hear himself) that I shouldn't continue to waste the one thing that was still working, and apparently better than the past few years -- my so-called brilliant mind and way with words. He's on me to write some kind of combination research compilation (I used to teach research for non-fiction writing, and I am more and more delighted each day I spend in bed with my iBook which is connected wirelessly to the cable modem and is now operating as an extension of my overly curious brain but ever failing body) and a so-called survival guide to ours and perhaps other rare chronic diseases. It has occurred to me, then, that the best writing I've done in the past three years has been in the form of letters here in this group. And we, you and I, have the unique opportunity to go back and reread, save, rewrite, document, what have you, all the way back to the first post we ever wrote in this group. All one needs do is visit the actual yahoogroups website and do a search of the posts related to our screen name (or names in my case). I wish I'd thought of it sooner, for both Aisha and Tracie have come to be able to predict when my episodes of confusion and agitation are coming (my immuno has explained that the psychosis I have endured in various degrees is probably more a symptom of the disease itself and not the drugs treating it, as I was lead to believe by my former team of doctors.) I know everyone will tell you to journal, journal, journal, but I've kept journals since I was a girl and I hate rereading things I wrote only for myself to read in the first place. Besides, I think our writing is more clear when we are attempting to be exact through another person's perception. Sorry to dwell on the academics of all this when Gregg is battling the real uglies of this and I expect at least one acquired secondary chronic illness. So now I get to do something small for you. If Gregg had a collapsed lung, and if his autonomic nervous system is getting fritzy, just take a peak at a Website called PHCentral. PH is a condition affecting the heart and lungs and the process of oxygenating blood. At my last visit with our midwest sarc guru, Dr. Baughman at Uof C this month, he has told me that so far fifty percent of the folks with severe, chronic, widespread sarcoidosis acquire this disease as well, whether they show symptoms or not. There are others here whom I know to have this condition also, and they may chose to share as well. The confusing thing is that PH is also secondary to sleep apnea (I do not know the percent), and, according to Dr. B. three years ago when I first saw him, fifty percent of folks with neurosarc have some kind of sleep apnea as well, so the docs may chose to blame PH on the apnea and not the sarc, but regardless, it's not a condition to be ignored, for sure, but, happily, is no longer the serious threat it used to be if porperly treated and monitored. Back to apnea and Gregg. Off and on since 2000 I have had apnea, but when I am in a real flare from the neurosarc, I have a particularly difficult case of CENTRAL apnea -- more like SIDS. And it has returned, so I'm a bit antsy for the pulmonary guys to make some chanages. Central apnea is when the brain message to breathe does not initiate inhalation. I wore an apnea monitor in the hospital when I was struck with a bad staph infection that turned terribly septic and landed me first in intensive care and in a hospital bed even after going home for six months. My central apnea kind of appeared in the ICU, and continued to plague my nurses and aids for the next five weeks in hospital and rehab. Ut was particularly difficult because the second my brain waves were whisking me off into that painless cloud of sleep, all manners of alarms awakened me. That lovely habit of my autonomic nervous system abandoning ship went on from May to February of the following year. Talk about your lack of sleep crazies! Everytime I went through normal rituals of turning off all the lights, the television, etc., and relaxing to sleep, I guess my brain just got too relaxed. I did manage to learn how to get around it. If I sleep with the television on (i use headphones in bed with my husband) and the screen dark, it somehow keeps the brain waves flowing well enough that I eventually fall off to sleep -- originally they had me listening to pleasant television or radio in the hospital because I was pretty poisoned in the brain and would wake up screaming from the nightmares. I don't get nightmares if I wear the headphones, plus the O2 level stays where it should be. Sorry for rambling, but I really feel for you and your husband. I feel every day that I have robbed my husband of having a " real " life, and yet we are as devoted to each other as when we met. You two sound like you are equally dedicated, and I believe that the power of a union like that is magnetic. Things will work out. Please give Gregg my best, and let him know not to give up hope -- ever. Regards, > Hi Y'all, > > Gregg has just come home from his 15th or 16th hospital stay. This > time it was 9 days. He came in because he couldn't control his back > muscles and it scared him - also he hadn't been feeling well for > several days before that. I was working, and called an ambulance to > pick him up and bring him in. When he got to Emory Hospital, about > 2pm on the 17th, I left work and met him in the ER. > > They thought he had pneumonia and admitted him about 10pm, but there > were no beds available, so we spent the night in ER. (my > fellow-secretary in Pharmacy) was out last week, so I had to work that > day even though I'd had no sleep... When I left for work at 9am, > Gregg was taken to the " Care Initiation Unit " on the 7th floor (which > is about a half-step up from ER in that the beds are full-sized > hospital beds instead of gurneys. That night, after an MRI (during > which his back began spasming and he had no panic button and no one > responded to his screams for some time...) he went to the 5th floor to > a General Medicine area where he was treated for pneumonia and a UTI > and was poked and prodded and asked to do things while they tried to > figure out why his legs are paralyzed. The MRI showed additional > lesions on his spinal cord and rampant inflammation so they put him on > IV dexamethasone (steroid). 2 days later, he was released by general > medicine and turned over to Neurology who transferred him to the 3G > Neurosciences unit (home sweet home, in other words...). Neurology > planted a PPD skin test on Monday night and when it was negative on > Wednesday night, he was given Remicade. > > There - that catches you up to this last e.mail I sent out tonight to > the Emory folks. > > I'm sorry I took so long to write - I must really be wearing out! All > day Thanksgiving, I slept on and off and we had dinner. That's about > it. I didn't stray out of Gregg's room except to go get food. Today > I worked all day, but I was so busy I didn't have time to write. > > I'll try to catch y'all up briefly: > > Gregg got his Remicade infusion not too long after his PPD skin test > was read Wednesday night. Thursday, he and I both slept mostly. > During the night on Thursday, he began feeling cold and sweating. The > Docs said this was probably a drug side-effect. He never felt sick, > though, thank heavens! > > This morning, the Dexamethasone IV was stopped and he went back to > oral Prednisone 50mg QD. > > Flexaril has been added to his drug regimen - it's been very effective > keeping his back muscles from spasming, and hasn't made him sick like > the baclofen did - something else to be thankful for! > > He finished his antibiotics for the UTI days ago. > > What the Docs originally thought was pneumonia, they decided later was > a partially collapsed lung. The only theory I heard about the cause > of that was this " creeping " paralysis he's been experiencing for > months, now. I wish we had asked more questions, now. I hope I'll > remember to ask when the opportunity arises. Once we were transferred > from General Care to Neurology, nothing more was said about the lung > thing. > > The Neurologists think that the lesions on his spinal cord are > thickening and that is what is blocking messages from his brain to his > legs and other parts. > > About that paralysis - the numbness began just below his belly button > and went to just below his groin. Between June and now, it's spread > to above his belly button and down nearly to his knees, with tingling > below his knees and sometimes his feet are numb. It's not just on the > surface either - his internal parts don't work in that area, hence his > need to self-cath in order to urinate and difficulty defacating as > well. If the paralysis was indeed the cause of the lung problem, and > it continues spreading, it may reach his heart. That's too momentous > to contemplate at this time... What worries me more is that I see and > feel his arms getting smaller. I remember that his leg muscles began > atrophying months before he began to seriously lose functionality. If > he loses his arms as well, he'll be bed-ridden. Sigh. (BIG sigh). > > This disease has taken SO much from him. I just wish there were > something that could be done to heal him! > > On the financial front, we now have a rent payment that completely > eats up Gregg's disability check. The back-pay wasn't enough to pay > off much of anything and went for necessities of living and taking > care of kids in the present. I've contacted Consumer Credit > Counseling Services and been advised to write letters to all our > creditors explaining our problems with paying them. The counselor I > spoke with was confident that they would be willing to work with us. > > There's also the possibility of our landlord accepting a lower rent. > I'm not counting on that, though. > > I do know we will be taken care of one way or another, and I'm > thankful for that. > > Thank you all, again, for your support and prayers and kind words > throughout this long long illness of Gregg's and our challenges > connected with it. We appreciate you so very much! I hope you all > know that, even when we don't mention it! > > Lots of Love, > Jeri > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Neurosarcoidosis Community > > NS CHAT:- Has been cancelled for now. > > Message Archives:- > http://groups.yahoo.com/group/Neurosarcoidosis/messages > > Members Database:- > Listings of locations, phone numbers, and instant messengers. > http://groups.yahoo.com/group/Neurosarcoidosis/database > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 Oh, Rene, Thank you so much for the heads-up on the apnea thing! And I wish I were there to give you a really big hug! Please feel this virtual one! We're home now and I'm about to leave to run errands! I'll probably be gone until dark. Gregg hates it when I have to leave him for hours on end, but there's just no way to avoid it! I do enjoy your writing - so I second your husband's encouragement of you to keep doing it! Someday I plan to write something myself! Lots of Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2004 Report Share Posted November 27, 2004 Rene - I tried to send mail to your individual e.mail, but it bounced ("permanent fatal errors"... Love, Jeri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Hi Jeri, I'm sooo very, very sorry to hear about Gregg's additional problems. I will keep you, Gregg, and your children in my prayers. Very sadly, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 By the way, Jeri, How was it that you finally got Gregg's disability approved?...what did it take to get the insurance co. to realize how sick he really was and was unable to work? I know you are so busy, but would love to know if you have a minute to respond. Thanks very much, Joan Quote Link to comment Share on other sites More sharing options...
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