Monday, November 15, 2010

Home For Now favourite place to be. Now if only I could be back to my normal self (vacuuming, bathroom-cleaning, and cooking included) again. Much to my surprise I got discharged from the hospital this afternoon. The main reason for my discharge was because the doctor wanted me to be able to go up for our daughter's bone marrow test. However, because my echocardiogram is being scheduled for tomorrow, I wasn't able to go up anyway. My heart rate is still very high on occasion and my blood pressure low, but other than that, I'm managing okay. So, for now, I will enjoy my own bed while I can! I typed out a long-winded post last night on a different computer, but I think I'll just type out what I can think of right now to catch you all up to speed on the latest craziness in our life.

I was admitted to the hospital on Friday afternoon after seeing a few different doctors and trying to convince them that something was wrong with me. (If you recall, I've been feeling pretty awful for the past month with weird painful lumps, exhaustion, dizziness, and general pain that just kept worsening every day). After a thorough examination, the doctors finally decided that oh yes indeed, something was definitely wrong with me. After a brief leukemia scare, which has now been ruled out ( I think), the question remains: what exactly is wrong? I was put on a heart monitor due to my fluctuating heart rate, which at rest was 127 at times vamping up to 150 when I just got out of bed. I continued to have major leg and ankle pain at times, awful pulsating headaches, occasional tremors, and temperature fluctuations while in the hospital. I was put on all sorts of medication and put through all sorts of tests. Unfortunately, I still remain mystery diagnosis.

This morning my heart rate was steady at about 64 bpm for a little while, which was a really good sign. My heart rate did go up later on in the day, but it was overall much better than it had been the past few days. This morning I had a ct scan done of my abdomen (with the dye...oh that was not the most pleasant experience, let me tell ya!). I also had an electrocardiogram of my heart this morning. Tomorrow I will have an echocardiogram of my heart done. On Wednesday I have a ct scan of my head scheduled. Oh..and I gained at least 10 pounds (no joke) in the hospital these 3 days...lovely. I'm going to blame it on all the awful steroids they had my on plus lying in bed for 3 days straight:-). Pretty sure I can't attribute the weight gain to the gourmet hospital food (although it truly wasn't that bad this time). It was like they put me on these meds and suddenly I was starving all the time.

So, what exactly do they think is wrong?

Well, the doctor thinks that I've had some kind of problem for a long time now, but the stress of everything that's been happening lately just "brought to light" a problem that was already there. (I have a feeling the flu shot didn't help matters, either!) She suspects it could be either my adrenal glands, pituitary glands, thyroid (so an endocrine problem), an autoimmune problem, or possibly neurological problem. ( I think that's in the order from most likely to least likely). See, the weird thing is that when I first went to my family doctor about a month ago and got blood work done, my blood sugar was low, which was weird. We just kind of passed it off as "oh well" no big deal, even though I was pretty sure I had eaten breakfast that morning. I also had a lot of problems with dizziness and low blood pressure when I was pregnant. The reason why an endocrine problem is high on the list of possibilities is because it seems like I'm up and down. No pain, then tons of pain. Cold, then hot. Fairly normal heart rate then sky-high heart rate. Tremors, then no tremors. Feeling okay energy-wise to flat-out exhausted, etc. etc. The doctor is pretty sure my feet and legs have discolouration on them as well. My hands seem to get strange-looking at times, too. She is pretty sure the lumps are just a secondary inflammatory response to whatever is going on.

Anyway, I'm exhausted.I know this has been a very disjointed post, but oh well. I just had a weird pain reaction thing right now in the middle of typing this just before my hubby phoned me. I just talked to him and Bittles is settled in for the night. Hopefully her test will go well tomorrow and they will come home safely tomorrow night. I'm off to take my heart pill and hit the hay. As always, prayers are welcome :-)

1 comment:

Betty K said...

I just lost a whole post I had prepared because I am not computer savy enough to get a password etc. before I post. I will try again. I don't know if you will wnat this on your blog but since I dont' have your e-mail address iam posting here. So much of what you are posting rings a HUGE bell with me.I am writing this to encourage you in case all the tests they do come bak negative for you as they did for me.I felt like such a fool because all these things kept happening to me and all the tests they did were normal i finally found a docto who said we will try a new medicine and when it helped she said that is guilt by association.

My first problem was aching bones and joints that started in my childhood (called growing pains)
got worse in my 20s (called rheumatoid arthritus and treated agressively including steroids (prednisone)then in my 40s I got severe bouts of chronic diarhea that in the end were a daily rpoblem. When we moved to Flin Flon ( a mining town it really took over my life. the doctor there decided to ryn all the tests scan for a brain tumor, pituitary scan (my prolactin was high)all the heart tests and I forgot what else. I did have a lot of palpitations which they called panic attacks. ( learned since that most of the mastofolks are told that is their problem before they arrive at a diagnosis (average time from onset to diagnosis 14 years.)One morning I woke from a depe sleep feeling like I had run all night(pulse over 150)I also had a lor of trouble feeling like my blood sugar was low and took to sipping on Pepsi all day to keep me going at work. In the end that did not work either. The symptoms I had were too numerous to remember or mention them all and there are others who have symptoms I don't have.

When we moved away from flin flon I made amazing progress in feeling better and was even able to work again for a while. The connection I made as time goes on is that sulfer is a huge trigger for me and the mione produced huge amounts of sulfur dioxide.

Many of us me included have swollen glands with this that come and go and can last for a long time.Just for interest sake I asked if anyone gets lumps on their skin and a few said they did. One said her doctor told her they are mast cell lumps.

this topic is way too huge to tell it all in one post. If anything here rings a bell with you think back to what you changed about your life when all this started and try to eliminate it.
For example I was getting worse a g ain and the meds did not help then I realized I got my drapes drycleaned about the time the problem started. They had been well aired out and did not smell but when I removed them from the house I got markedly better in 24 hours,

Anyway you can contact me if you want to know more. Ken andI have had adaughter with a malenoma, and grandson with a fatal genetic disorder and Ken with leukemia in the last two years, We know you are under a lot of stress and incidentalythat is a high trigger for mastocytosis problems.

We pray for you and yoursregularly.
Love in Him Betty K
PS>The flu shot last year sent me into a series of attacks that lasted at least 2 months. I suspect it was the eggs in the shot. I don't do well with eggs.I am part of several support groups

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