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Who Am I

   My name is Brenda and I was born in Mesa, Arizona on 11/22/51. I grew up as an only child and my life had plenty of ups and downs. As a child, I craved salt and hated sweets and still do.  I have only recently found out that I  crave salt because my body needs it. I was 14 years old when I had my first "grayout."  I call it this because I did not faint completely but while taking a shower came very close to it. I became nauseous, my ears started ringing, I started sweating and my vision started tunneling. My legs were turning to rubber but I managed to get out of the shower, wrap a towel around me and laid down. After about 30 minutes, I started feeling better but exhausted.

   I didn't understand what had happened but never saw a doctor for it. We really could not afford to go to the doctor very often unless it was really bad and since I got over it, I didn't think it was too bad. Over the next few years this happened off and on at various times. It usually occurred when I was standing in line somewhere. It could be very embarrassing to say the least. I learned to sit down as soon as possible when I started getting sweaty or nauseous no matter where I was at the time. It pretty much eased up during my middle years mainly because I avoided situations where I would have to stand for very long. Learned to hate shopping, parades etc. 

   About 1990 things started happening to me again. I had a headache that would not go away. It went on 24 hours a day for almost a month. I was seeing a doctor, a chiropractor and a dentist trying to find something to get rid of the pain. My doctor decided it was TMJ and shot cortizone into the side of my face where the upper jaw connects. It didn't really help at all and it was another 2 weeks before the headaches stopped as fast as they had started. That is also the year that I fainted completely 3 times in one day while I was out with my daughter in the next town. I didn't think too much about that because I had given blood earlier in the day and attributed it to that. Although I had been donating blood for years without it happening. I have been too scared to donate blood since that time though. I never did see a doctor for it though. I have never been one to go to a doctor very often and just hate it. I think part of it is because I hate sitting or standing still for very long. I have to stay busy or I get nauseous. I always kept myself busy working more than one job, then coming home and cleaning house and cooking all evening.

   In August of 1990, I lost my oldest daughter to suicide, then lost my next daughter in February of 1991. This put me into a tailspin but I continued working. One because I needed to stay busy and two, because we couldn't afford for me not to work. Around 1994, I was starting to have trouble with shortness of breath, feet and hands tingling and getting tired very easily. The doctor did chest X-Rays and my lungs were very good considering my smoking. He sent me to a cardiologist who had me do a treadmill test and he put me on Atenolol. It didn't agree with me and my Primary doc took me off and tried me on some kind of timed released nitro which really put me out of kilter. I quit that and said no more docs. Also during this time, the doc decided I was suffering from depression and I can't remember how many different anti-depressants he tried on me. Nothing helped the fatigue. Doctor cut out a planters wart from the bottom of my foot. It healed over then abscessed and was horribly painful. I was given 3 different pain meds that week and he finally decided it was abscessed and drained it. But 3 different pain meds for someone who is supposedly depressed and had family history of suicides? I hate pain but I hate pills even more so I did take them but not often. I am scared of becoming addicted to them as I am to nicotine.

   BY 1996, I was having more fatigue and my feet and hands were tingling even more. I was now also starting to have more joint pain all over. More doctors. Now I was told I probably had Carpal Tunnel in my wrists but that my feet tingling was because I didn't have enough padding on my butt. No reason given for the joint pain other than "probably depression." I know depression and my reaction to it and I know this was not it. In 1998 I switched doctors because of the pain I was having in shoulders etc. More tests. Now it was decided I had depression and a hyper-thyroid with a couple of nodules on my thyroid. My thyroid level went up and down and after the scan, they decided the nodules were benign. My muscles were getting very weak and my exhaustion was getting worse. My joints felt like they were on fire at times. More tests. Put on a computerized machine to test the strength of my leg muscles. They decided they were 50% weaker than they should be for a woman my age. Had physical therapy, that made it worse.

   By this time I was working only one job. Even though I have been an EMT/Dispatcher most of my life, I was working as a CNA at a Nursing Home which was only 6 blocks from where I live. I got great evaluations because I worked hard and came in on my days off to cover for others who called in sick. But I was getting tired. I applied for the Social Services position at the nursing home and got it. I really like that as I had more time to spend with the residents, I thought. I ended up spending most of my time driving them to doctor appointments or moving them from one room to another when they needed to make room. One day I physically moved six different people, furniture and all. My weakness was still getting worse but I pushed myself to do my job. I went home exhausted and could barely move the rest of the day and spent my weekends doing very little. I quit doing much cooking and baking. By the end of 1999, my weakness was worse and I was starting to get dizzy quite often. The pain was also getting much worse in my joints, especially from hips down. More doctors, more tests. I continued driving residents around but only took the ambulatory ones now. I could no longer get the wheelchairs into my car, I didn't have the strength. The home had bought a large Van in September of 1998 but it scared me to even think of driving it. I bought extra Insurance for my personal car so that I would be covered that way and they had others drive the Van when needed. I usually went with them to assist however. I continued getting good evaluations because I was still a hard worker and did much of the computer work that needed to be done in the facility.

   Meanwhile I have had my Tilt Table test and been diagnosed with NMH and both doctors have decided I have CFS. My BP at the beginning of the test was 82/49. It went much lower after the tilt and before I fainted. My primary doctor is also wanting me tested for FMS and I am not sure when that will be yet. 

   I have found a great group of new friends in a Support Group who all have the same problems as myself and this has helped more than anything. I continue being dizzy quite often and nauseous a lot. The pain is worse some days more  than others. My brain fog also is worse some days. While talking I lose the words quite often. I feel like I am losing my Independence and that bothers me more than anything. I realize it is difficult for most people to understand because I look healthy. I stay home as much as possible. When I do go anywhere out of town, my mother goes with me to help with the driving. I'm afraid the day is coming soon that I won't be able to do that anymore. The doctor tried me on Midodrine but it wasn't raising the BP much and was giving me worse headaches and chest pain. So I walk around feeling drunk most of the time. My nose and parts of my face become numb. I smell odors that nobody else can smell. I am losing hair, thank goodness it was thick to begin with. I will be 49 this month. What and who will I be in 10 years? But I'll be damned if I give up.

 

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