I cannot take much more. 1st of all, I am sick of Dr's, Specialists, Hospitalizations, tests, blood work, medications, in home nursing and physical therapists. I am so tired of bad news all the time. I just want to be "NORMALLY HALTHY", for just 1 week, pain free and happy, not wrecked with pain and depression because I cannot live a normal life. I have been sick since 2000, so many DX's, hospitalizations, tests and medications. Since Dec 1st, 2015, it has been non stop. Three times hospitalized, 2 times very close to death and once for my MS going into a bad flare. The past 2 weks nd yet still 2 more weks of appointments have been hell. CT SCANS, Pul Function Tests, arterial blood gasses, PT/INR's every 3-5 days, sleep study overnight. I postponed a few such as GI and a few others. Saw my Primary care DR nd pulmonologist and eye dr. One on Thursday and 2 yesterday. My Primary said my PT/INR is 2.1 but doesn't want to increase the coumadin anymore because after the bleed back in December he is too worried. My pulmonolgist said Cat scan looked good, the blood clot I had in my left lung had disolved. I asked when did I have this clot, because it was the 1st I had heard of it. His answer was simple, I must have developed the clot at the end of Nov, when I got very sick after being exposed to the black mold. No, the mold didn't cause it but added enough illness for me to be so sick with coughing and needing oxygen, that I went to the ER. However that hospital did not catch the clot, blamed my acute illness on COPD, being I am or was a smoker. I had such coughing fits while I was there and wasn't getting better just worse that I signed myslf out AMA. My husband drove me for 28 hours straight back to Connecticut to get the proper help I needed. By this time, I developed a bleed as my INR was way too high. It was an abdominal/chest bleed in which I developed a very thick 12 cm x 8.5 cm hematoma. I assume thats when they also found that I had this clot in my lung. I was out of it for a few days. I don't remember too much, they may have told me about the clot, I don't remember. Yesterday, I went to my eye Dr as my vision has been progressively getting worse and I felt it was time for new and stronger lenses. My eyesight is so bad that I am not allowed to drive anymore, that doesn't really bother me as my hubby does all the driving anyways, but the reason does. I am 58 years old and my auto-immun illnesses havee played its toll on my eyes. No new prescription as I ned to see the surgeon for extreme catact removal. With the surgery I should regain most of the sight in my right eye. The left eye however, is worse. He said the reason for the surgery on the left is 2 fold, to remove the cataract because its extreme and to be able to see whats going on in the back of it as he saw something he did not like. Even with the removal of it from my left eye, he doesn't believe I will get my vision back in that eye. I am going to see the hematologist on the 9th. I have had too many blood clots not too be in a theraputic range. My primary and Pulmonolgist both concur they are too worried of me developing another bleed. So what??????? Chances of a clot killing me is less then the chance of bleeding out????? I don't understand. All I know is this, I am sorry again for a very lenghty post. I have no one at home I can vent to. They don't understand or are just as sick as I am with dealing with all this, so the support is not here. I'm so tird, at times I just want to give up, and other times I want to fight, get better and enjoy some life again. By the way, I fired the nurses and physical therapists that was coming in, as it was just way too much with all the appointments, I had no time to breathe. Thentheir social worker called me, and asked if I would be willing to go into a sort term rehab nursing home until I got back on my feet, because they were worried about me and after all she said, your insurance will cover it. Rant over, sorry agaain. Thanks for being hre so we have someone for support.
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