LiFe In ThE hOsPiTaL

      Well things have been pretty rough for me the past couple of years. I feel like I live in this little prison cell that they call a hospital room. Its even worse because  I am in isolation, so they have to gown up and all that crap before they can come into my room, its such a pain... It seems like things got really tough after my bout with sepsis. I went septic about 2 years ago from a porta-cath that was implanted in my chest. I got what they called kleb ciella(sorry about the spelling). It got really bad... I have had three ports before this one that got infected with MRSA, and they just removed them and treated the infection. However with this last one, it sent me into full blown sepsis, it tryed to kill me. I ended up on a ventilator for 5 days. And it truely scared the hell out of my family, and when I woke up it was pretty scary.
     Anyways as I said in my intro I have been fighting Lupus for many years. I also have scjogrens, reynauds phenomenon, anti phospil-lipid syndrome(APS), thrombocytopenia, supra ventricular tachycardia(SVT), gastroperisis, cyclic vomiting syndrome(CVS), dermatitisitis, asthma, migraines, mild lung disease, endometriosis, and I have suffered from a mild stroke, and several blood clots. It has been a pretty rough battle for me, I have had a lot of surgerys from alot of these problems. I have had a splenectomy, apendectomy, gall-bladder, complete hysterectomy, sinus surgery, several J/G tubes, many laporoscopys, and an EP study with ablation. Most things started getting worse at the age of 20. Currently I am 31, and as I said earlier the past few years have been pretty rough. Currently I am in the hospital, and I have been in her pretty much since October 27th. I have been released a couple times but since Oct, I have only been out 8 days. I missed all the holidays this year, and it was very lonely.. My family celebrated with the entire family, then my parents made me a plate at Thanksgiving, and Christmas dinner and brought up to me, and they spent some time with me. They even brought my gifts up here to the hospital. I am so lucky to have family close.
     I live with my grandparents, and its a great thing to have them around. I would be completely lost with out them. I got one of the biggest scares last year. My parents came up to visit me at a very odd time, and the minute they walked in the door my dad started bawling, and he NEVER crys, so immediately I started to cry and kept asking what was wrong. Finally my mom got herself together enough to tell me that my grandmother had a stroke... I lost it, it truely scared the hell out of me... The next day I was able to put my self together and act like I feeling ok, so that when the doctor came in that morning I was able to talk him into letting me go home. I knew that I wouldnt last very long, but I had to get up there to see my grandma. It was pretty scary at first, she couldnt see anyone, but she did recognize most of our voices, but she couldnt remember anything. Someone could come into visit her, then 5 mintues later she didnt remember them coming in. All I , could do was cry.  And of course I was only out about 3 days before I was re-admitted. The problem was we were both in differnt hospitals. But the family was very good about keeping me updated. She made great progress. She still has a little bit of problem with short term memory, alittle bit of sight problem (peripherally only), and some numbness in her left side. And of course shes left handed. And even now shes almost back to normal, but she really misses driving. She can see, just not well enough to get behind the wheel, and I know it drives her nuts, it just feels like some of you independence is taken away. I am just so happy that she has recovered so well, I dont know what I would do with out her, or Jay.. I would be completely LOST!!! She also has a great husband, my step-grandfather, Jay who takes GREAT care of her. Its so cute, hes like our in home nurse.. She's pretty lucky she found a great man, he would do anything for her, and when she was in the hospital, he was just lost. He is great, he always puts her first, and he just loves her to death. My grandfather passed away when I was 14 from lymphoma(cancer), he too was an amazing man, that would do anything for her. She has been very fortunate that she has found another man that is awesome, and really takes care of her, and that would do anything for her. And I am proud to call Jay Grandpa as well. I love him to death too. I am pretty blessed to have such a great family. They work during the week, but on Sundays after they go have their breakfast, they always come and visit me. I couldn't be any luckier to have such a great family... Anyway this is basically an intro, and I plan to try to keep up to date and use this kind of as my lupus diary. Thanks!