OK this will prob be a lil long, I am going to have to apologize first, I know there are several here who care about me and have expressed concerns from time to time and well despite getting busy with my life, isn't really a good answer for my absence in responding, though I have been lurking a little. So I am sorry to those who are, may have, and still are worried about me. I truly love you all and wouldn't want to cause any concern on my behalf. Now the update and now for warned this will cause a concern and worries but I want to remind I am alive still and very much fighting. So here is the story, and I tell this with tears at times as it is a tell of me feeling as if I am losing myself maybe my life and being afraid of what may be happening to me or wondering how many days I really have left on the earth, and maybe God is knocking on my door as if to tell me my time is to come home, and feeling if it is true I have so much I want to live for so... Here it is and about why or at least partially where I have been.
:some of you know I have a congenital disease which until recently didn't really impede me much but has now became very active, it is a disease the effects 1 in 250000. So Yea it's kinda rare, the name for it is Osteo Genesis Imperfecta aka (literal term imperfect bones) more commonly called brittle bone disease. I am type 1, if you wish to know more you may pm me or simply Google search. This disease has made other issues in my life and also severely complicated things recently. Currently I am hospitalized. So let me start how this began,: and also not to just run away with the topic and also prevent as little confusion if I can.
:Dec 2013 I had 4 disc's removed, and lamenectomy performed, 3 month of work to verify nerve damage, went back to work till July where 2 additional disc's burst, out of nowhere and without cause, an unlucky event that the Dr chocked up to (just bad luck), and party to do with my disease. Had emergency surgery was in hospital 4 days. Had minor healing stents but overall healed, got released that with now permanent restrictions.(should of seen it coming now that I am missing 6 discs)
Sept 15 (last month) we go out to a seafood restaurant to celebrate a lil and to relax (me and my bf needed it). Had dinner which shortly after went to hell fast, I started having breathing issues (asthma attack) I didn't have my inhaler (prob didn't matter) I was rushed home, had to be carried out of car I was turning blue, busted out the breathing machine but it didn't work, 911 was called. Asthma was actually anaphylactic shock/reaction. Out of no where I became allergic to shrimp
I spent 7 days in hospital, 5 in icu, 3 with a tube down my throat.... Release on the 21st even though I shouldn't have been as my 02's were hitting 80 when I walked, but I convinced Dr on call I'd take it easy, and continue meds and rest, 30 a vein in my hand burst, we went it to find out I was OK, 1st of Oct, asthma returned, 911 called again, thought on Route we got control of it, but Dr's wanted to heck me out, than 1,2,3 asthma attacks every couple hours coughing up junk, in I went I was hospitalized again. X-ray showed pneumonia, blood test showed entero virus d68 (suppose to be kid deal right?), not with my disease and also my lower lung compacity (which is because of the disease). So this has been a fight and a decade one at that, I almost went back on the entubator, but instead they put me on a by pap to assist my breathing and lower capacity, and O2 as well. I have been pretty bed ridden while they have been fighting and doing their best to make me better, all of which may have been less complicated had it not been for the disease
, but there seems some sunshine at the end, I am still receiving nuclear grade antibiotics, but they are slowly lowering the steroids as the Dr said unless we get those down I can't go home so I have a few more days at least
new things that will mostly become part of my life will be oxygen at home, there has been talk and a bipap for when my longs can't keep up
which this is depressing, and at this point even though I don't wish it, complete disability may be on my map
..... So there you have it, I have cried so much, I have never been in a hospital this long or this sick, and I know if it wasn't for my disease ID be doing much better, the Dr even said that my disease has significantly caused more trouble and the whole situation more complicated, . I'm not going to lie, I want to go home so bad it's unreal, this just sucks. And if I didn't have enough issues I have no other which is my question, and I need some people who can genuinely pop in on this.
I had my grs in March I am much past a year, but during this Stent, I haven't been able to dilate at all, I do uses my finger and add a bit of lube for comfortability but I'm still concerned about the depth, before this I could almost envelope the orange soul source cept the inch at the end. Should I be concerned? Or try not to worry, etc? I can't help but worry, it was a huge investment and I'd hate to lose it but perhaps this is beyond my control.....
again sorry for not keeping everyone enlighted, :/, definitely feels like my life is out of control, and how I wish oh god I wish I never had this disease, after grs I felt I had finally won, and it was over, not it just feels like a never ending spiral
, sorry for the run on, I did say it'd be a bit long, and on top of all this why why why wtf can financial situation not be put on hold when this crap happens, in my head there is that worry to, am I going to be able to do my follow up, am I going to be able to get my meds, the new by pap machine or my oxygen,
to say I am not very worried, would be a strait lie, and to say I'm only slight concerned would be an under exaggeration...... Anywhere there you have it, and here I am still feeling lost concerned and afraid, I think I'm going to cry again, pm me if you want or email me/call me if you have my contact info with love C.
