Me in 1985
|
The following is all true even though I omitted names of places and people. At 2:00 P.M. Tuesday afternoon, they gave me some medicine (a beta blocker) to bring down my blood pressure too fast. (To my knowledge my blood pressure was never stroke high but it kept going up and down following the TIA.) I had a toxic reaction to it for I became very cold, had bad chills, and felt nauseous like I was going to throw up. Within 3 hrs. I was speaking slurred and my right arm and leg felt heavy but I could still lift and move them. Then at midnight they woke me up to give another dose. Though I kept refusing and saying it was bad for me the nurse pressured me into taking it. Anyway I again had the same reactions of being chilled and nauseous. The end result was that when they woke me up the next morning, to give me 3rd dose, I found myself paralyzed from head to toe. They called the doctor (a cardiologist who prescribed the medicine) when I refused the 3rd dose. He checked me then said, "It doesn't matter cause we will change it." Then later another doctor checked me, whom I called Mr. Turban because he wore one, and he proceeded to discharge me in my paralyzed condition. I refused saying I would die if I went home. He had me moved to the first floor which was supposed to be for ambulatory patients only. The nurses were mad when they found out I couldn't move myself. Since they put me in a bed with no overhead rails or side bars, I couldn't help move myself even with my unaffected arm and leg. The result was they often ignored my buzzer sometimes even for several hours, so without a catheter or Foley, I was often laying in pee soaked linen and didn't get turned so had to stay pretty much in one position. Because of this neglect, my husband and sister took turns staying with me and sleeping in my room to make sure I was properly cared for. Needless to say my husband was very worn out by the time he went to work. This went on for 5 days following the stroke, all the while they still kept trying to send me home. They were also giving me regular food and normal liquids which I could easily have choked on, considering half my throat was also paralyzed, and no one ever mentioned a stroke. We kept praying for the Lord to send someone to help us for death was staring me in the face. I even asked Daniel to let me go at one point. Then a visiting doctor came and checked me, ordered a cats scan and found the stroke -- 5 days after it happened even though I had all the signs with droopy eye and mouth, slurred speech, and paralysis. My arm and hand had also curled up. The visiting doctor, who was on call but from a town an hour away, then had me sent to ICU were I was monitored every hour and was there for 5 days. In ICU they put in a Foley so I longer had to worry about wet beds and I was also transferred to an air bed. Since I was so weak at this point the bed was a God send and I was well cared for. After I was transferred back to the 2nd floor from ICU, I again had the problem of not being turned by the nurses. To make matters worse, they often took the controls away from me or put them out of my reach so I couldn't change my bed position and my weight caused me to sink into the air pockets so I couldn't even move my good side. I often cried myself to sleep as I was so miserable and in pain. They accused me of just having a pity party and said I needed to stop babying myself. After a week of pleading with the doctor to get me back into a regular bed, with bars and rails so I could help move myself with my left arm and leg, or good side, the doctor finally agreed. The nurses however still weren't helpful and my sister and husband still often stayed with me. Except for a few good and caring nurses, most of them I termed “nurses from hell”. Also, except for some students from a nursing school, I was rarely bathed or my hair shampooed and often not getting even a washcloth to wash my face with. My right arm turned blackish from lack of circulation and half of my palm was covered with thick white scales which my husband had to soak and scrub repeatedly to get it off. That should never have happened. Again the nurses often wouldn't answer my buzzer or call button. Then I got a roommate. She started putting on her buzzer and would send the nurses to me. They pretty much stopped answering her buzzer too but we became good friends and she'll verify they did this. My last week in the hospital, they started giving me some therapy to help strengthen me because no rehab would accept me. I was too weak. A doctor from the best rehab around came to talk with me and I was honest with him. Again prayers were answered because he took a chance and this rehab accepted me. The first few days were rough and I could barely walk 5 steps with a brace they put on my leg. Then the Insurance company called and told them I had to make substantial gain or I couldn't stay longer. The Lord was faithful and I walked 50 feet and improved in other ways too. The Insurance company gave me 2 more weeks. When I had no strength the Lord gave me the strength to go on and I kept meeting and passing the requirements. All the therapists were great and very helpful and encouraging. Then the Insurance said no more extensions just to call back the next morning saying they wanted me to have more therapy and gave me 3 more weeks. I let everyone know that was an answer to prayer and they agreed saying Insurance companies just don't do that. By the time I left rehab I was there 2 months and 1 week. As of now I can move my right arm but not lift it and have some movement in my fingers but no grip or strength in my hand. I'm typing this with my left hand and it's not easy. I can write with my left hand but my writing looks terrible although legible. Took me an hr. to write a one page letter to our son when I was in rehab and it gave me such a headache from the tension of doing it. The longest I have walked is 200 feet without stopping but with the aid of a walker, foot brace, and a special designed hand brace to hold my hand on the walker. Anyway, it will all take time and a lot of hard work to regain what I've lost. The right side of my face has loosened up a lot and no longer feels like it is full of novacane. I can sleep comfortably now, at least when my arm and leg doesn't have painful spasms which last anywhere from an hour to all night. Also I now sleep with a C Pap machine which forces oxygen into my lungs while I sleep. I still need help getting in and out of bed as I can't lift my right leg or use right arm. As for now I need someone to be with me all the time. The stroke has also affected my right eye and my vision is often blurry or I see double. Often times my head feels like it is in a vice but that's getting better too. At first even vicaden wouldn't knock the pain out, just dulled it. My right foot won't bend and is usually pointing outward, even when I walk. Hopefully that will return to normal but will take a lot of hard work and exercises. Worse, I have lost 2/3 of my voice and can no longer carry a tune. As a former worship leader and someone who loves to sing, this is hard on me. I think we have the grounds for a lawsuit. Between the bad medicine, though I'm not sure we can prove it but the timing and what happened seems too coincidental, being sent to the first floor and the experiences there, their trying to send me home for 5 days in this paralyzed condition and being given regular food and liquids during this time which could easily choked me, not getting any sort of therapy till 3 weeks passed, etc. is lawsuit material. I still can't believe that all the doctors couldn't diagnose a stroke knowing I went in from a mini stroke, especially from the visible signs of slurred speech, paralysis, droopy mouth and eye, etc. and it took a visiting doctor to say I had a stroke 5 days after the fact. With the bills we are now having and time lost with my kids, my physical condition, husband having to take time off from work which could put his job in jeopardy, etc. I think we definitely should be seeing a lawyer. Right now we are trying to get a copy of all my medical records from the hospital and the rehab. The rehab was great except for one nurse who treated me roughly and as an annoyance. Many of the nurses and therapists hugged me good bye and wished me well and thanked me for working so hard. My night nurse even woke me up to say goodbye as he was leaving early. Most likely I will be going back for out-patient therapy when things get settled. We had to buy a house so that we could remodel to meet my needs plus we did need something larger than a small 2 bedroom. Now our children can have their own bedrooms. But this means more expense as I need grab bars in various places, doors widened, carpeting taken off and linoleum put down, bathroom redone, etc. to make it possible to use my wheelchair or walker. For an already tired and stressed husband, who now has to do everything till I can have access to the kitchen, laundry room, and bathroom, this is another job that he has to do. He took a few vacation days when I got out of rehab but now has to go back to work, or as he says, we would lose the house and have no Insurance. Anyway, my experience was an ordeal in every way but rehab was a pleasure. I'm better now and with God's help it will turn out well in the end but I wouldn't wish this experience on my worse enemy. I appreciate everyone's prayers on my behalf. They worked wonders and still are.
It's been over 2 years now since my stroke. We couldn't find a lawyer to take my case as no one wants to go after doctors, so no lawsuit. Although I did have some outpatient therapy for a while, that has ended. I can walk using my walker and wearing my hand and leg braces but can't leave them on as my legs and feet swell too much. Basically I mostly live in my wheelchair. My shoulder sockets are non-functioning so I still can't use my right arm and hand. I can slide my arm across my body or on top of the table but cannot lift it. Wrist still bends downwards and fingers still curl. They are more flexible now though and don't need a lot of prying to open them up. Have no strength in my hand however. Thumb and pointer finger curl the most. When in my chair, I need something to set my arm on or else it just hangs. It's dead weight and makes my shoulders and back hurt when it's not supported. That's why I prefer a walker, when I do walk, as it not only helps to keep my back and head straight or more erect (if set to proper height) but it also keeps my arm up so it's not just hanging down. When one uses a hemi-walker or cane, they usually can't walk straight but lean to the cane side, which puts uneven pressure on the legs and back, and they tend to look down so to see where to place the cane. My voice is a lot stronger and louder but speech is often slurred and I still can't sing or carry a tune. Throat and jaw has definitely been affected and I still choke very easily, at times even on water. At least my pills don't need to be smahed anymore and I can swallow them. My vision has been affected and eyesight is often blurred. My son says I now have super hearing as I want everything soft. Loud and unexpected noises, talking, etc. affects my nerves and causes me (my right arm anyway) to jump, which hurts. I still have daily headaches but my head rarely feels like it's in a vice, unlike before, so that's a blessing. As for spasms, I still get them. They are like bad charlie horses that just won't quit. The muscles tighten up, relax some, tighten again and keep doing that. Sometimes they last just a short time, when I'm lucky, but sometimes they go on for hours. Usually I get the spasms in my right leg but sometimes my right arm gets them and sometimes it happens in my back. Fortunately they usually just occur in one area at a time but a few times I did get the spasms in the 3 areas at the same time. Now that was very painful. I take medication when the spasms start but it takes a while for it to kick in, so until it does one just endures. Occasionally the medicine seems to have no affect at all and the spasms just keep on and on. If they get too bad, then I have to ask my husband to massage my calf or arm, etc. as that seems to help relax the muscles and ease the pain.
Without the use of my right side, I still need help with just about everything. This is not the way I would like to spend the rest of my days but for now, I have no choice. It's the pits not being able to do anything and yet still have the head knowledge, ability, and desire to do certain things. Having to relay on others for everything is a lousy way to live, very frustrating (to say the least), and often makes the one helping resentful. As I'm often told. "I have better things to do with my time than to wait on you." Since I don't have a choice, it makes me feel like such a burden and causes a lot of stress for everyone. My usual comeback is, "Would you rather I be dead?" Fortunately I do get in-home care during the day and that helps. So unless I get a miracle, this is how my life will continue to be.
For anyone that snores, I recommend that you get tested for sleep apnea. See if you need a C Pap machine when you sleep. Strokes happen more often than we hear about from sleep apnea. Enjoy the time, abilities, and use of your bodies as best you can because they can all be changed in just a moment of time. Don't take it for granted. So much I wish I could go back and do differently but can't, and so much I wish I could do but can't and never will do without a miracle. So take care of yourself and God bless..
(Click the links below for more pictures and information.)
 coneofakind06@sbcglobal.net |