Being homeless in Austin has taken on a new dimension as I try and deal with my mystery disease. The numbness I described in my last diary has now spread to almost 60% of my body. I was taken by ambulance to the emergency room at Brackenridge Hospital on the 11th of January at 12:30 and was admitted to the hospital at 9pm. I have now had so many blood samples drawn that I feel like a pin cushion. LOL After having a 40 minute Brain MRI was done, I was informed they had found lesions in my brain. The next day I had a 2.5 hour full spinal MRI done. There were no clear results so a Lumbar Punch was ordered for Wednesday morning. The Punch was painful and intense but the spinal fluid was clear and now has been sent off for more testing. They do not know what is wrong or what is causing it but they have ruled out a few things. I have not had a stroke, heart attack, or aneurism. They say I might have MS but are not sure until the test results return. All I can do is keep doing what I know how to do best and that is keep on keeping on. This is not always easy considering the situation and how being homeless seems to affect the way some doctors treat patients.
Crossposted @ Daily Kos & Texas Kaos
When I had the Lumbar Punch on Wednesday, I was informed that I needed to stay as quiet as possible and if I was sitting up or moving about and got a headache I should immediately lay down. At 4:30 pm the same day, I was told I was being discharged from the hospital that same night. Even the nurse on the floor was stunned that they would send someone back out or even home the same day they received a Lumbar Punch. I am sure if I had been on private insurance instead of a MAP Card I would not have been sent home until the next day. I was instructed to come back to the hospital if the symptoms got worse, I had chest pains, dizziness, or started running a temperature greater than 101 degrees. I got my stuff together and was given a voucher for a cab ride to the ARCH. I was also given a prescription that I could not wait around to get filled since it might make me late for signing into to get some place to sleep. Even though the hospital had given me an anti-depressant for two nights, that prescription was not written.
Once I arrived at the ARCH, I found out I would have to sleep on a mat since I had not called early enough to get my name on the list for a bed. While waiting for the people on mats to be let in, I started to feel clammy, nauseous, and dizzy. I had the people at the ARCH call EMS and I was returned to Brackenridge Hospital. They started doing blood draws yet again and then started something new. They check my blood pressure with me laying down, sitting up and then standing. It turned out that after having been in the hospital for 4 days I was dehydrated. I then received 2 IV’s of liquids. I had been telling the doctors since Monday that I was having lower back pain that was sometimes intense. The emergency room doctor finally prescribed a mild pain killer that I could not get filled but they did give me one to take there. I was then informed I was being released from the ER at 2AM. This left me with nothing else to do than walk back to the ARCH and spend the rest of the night sitting on the sidewalk waiting for the ARCH to open at 6:30AM.
Thursday would turn out to be a very busy day with no rest. I called my case worker to make sure my name was back on the list for a bunk. I took a 30 minute bus ride to a Walgreens to get my prescriptions filled. I then went to lunch so I could take my first mega dose of Prednisone. For the first 4 days, I take 8-5mg pills at once then 4 days of 4, 4 days of 2 and 4 days of 1. Prednisone is a steroid with some weird side affects. One is feeling like you are having a hot flash. I can now understand how women feel who have had them. It is not easy to go from normal temp to full on burning up in .00002 seconds. It also has been affecting my sleep that was not all that great in the shelter anyway. LOL I am also having some mood swings that could be stress but could also be from the Prednisone. I do feel that it might be helping some as sometimes instead of numb I feel pain. The balance issue is not any better but I will get through this. I am patiently waiting for the next appointment which is the 24th. I was warned that some of the test results might take two to three weeks.
The one thing that has been great about all of this is that I have begun to work on one of my biggest demons while dealing with being in the hospital for the first time. I am learning to ask and allow people to help. I have this issue with Pride and always being the strong one and that is being chipped away slowly but surely. Friends and family have helped me in so many ways I can never thank them enough. The warm wishes, caring thoughts and many prayers have been my salvation through all of this. Some people visited and some even wheeled me outside to the sidewalk so I could have a smoke. LOL I know this would have been the perfect time to quit but it didn’t happen and probably will not during this high stress time.
I was able to go to my counseling session on Friday and was amazed at how much it helped to speak out about my fears and even shed a few tears. I have speaking out about these fears and shedding a few tears with family and friends as well. Thursday afternoon Robert took me to his house where I cooked pasta noodles and reheated homemade sauce he had for lunch and then was turned lose on a computer for 3 or more hours. It was nice to spend time with a friend and pet his beautiful puppy and just do what I wanted- even walk around barefoot.
I know this diary leaves more questions unanswered than answered but that is where I am at this time. I am dealing with each day and moment as it happens. Am I scared? HELL YES!!! But even so, I know that I will survive this with help from my friends, family, and doctors. No matter what the issue turns out to be, I will handle it with dignity and grace. Please keep me in your thoughts and prayers and as soon as I know something I will pass on the news.
I did want to share one antidote from my stay. My nurses and their assistants could not have been sweeter- except for one. Due to the numbness around my midsection, they were concerned with my body functions. I was asked everyday if I had had a bowel movement and if I was urinating okay. Well, most everyday anyway. On Tuesday night, I finally had a gay nurse and he was the nelliest thing on the face of the earth and asked me had I poo-pooed. I was not amused. I said no but I did take a Sh*t. I then proceeded to tell him not to talk to me like I was in kindergarten but as an adult. Except for snapping at the Neurologist and one of her Residents, this was the only time I was a total jerk in the hospital. The staff could not have been more helpful and supportive as they realized my fear and nervousness. I even gave the flowers I received to thee nures so that they would know know how much I appreciated their care. All in all- I think I handled it very well. As I have said before, “What Dosen’t Kill Us, Makes Us Stronger.” With help from the great people around me, I will get through this.
