Sunday, May 24, 2009

What Happened To Me Friday (before the rumor mill gets really started)

If you were following the Facebook feed or Twitter feed you know something went terribly wrong with my health on Friday.

First: to let you know I am a diabetic and have been a completely controlled diabetic since 2003. I am a quality eater for my diabetes and I test regularly and I am under complete Dr. control.
I have a type 2 auto-immune disease related diabetes.
I have secondary Sjogrens and I am an C.R.E.S.T. identified arthritic patient.
I am allergic to the regular diabetic meds like Metforman, so I have used either nothing, or one of the cell wall reducer meds like Avandia or Actos when I need medicated relief. (which I do at times when I have bad pain episodes with from the aquired brain injury-trigeminal neualgia from shingles of the brain)

C.R.E.S.T. identified means that I have so many auto-immune symptoms yet the ANA results are stable enough that no specialist can identify at this time what the Sjogrens is secondary to. But folks with the secondary Sjogrens are susceptible to polycystic kidney and/or lung disease and sclaraderma, and lupus. These are connective tissue disorders. So to help you understand better...I have severe arthritis of the glands blood vessels and any tissues that hold your organs in place and any tissue that excretes something. My esophagus, hand blood vessels, all exocrine glands including the pancreas are effected. That is why at 41 I was susceptible to shingles of the brain which only folks over 65 usually get.
I have had almost every exocrine gland removed that can be removed. I have had my abdomen peeled off and put back on and part of my face peeled off and put back on. I have had joints replaced. ( my face-perotid saliva glands will probably be the next removed.)

My pancreas and kidneys do not function at normal speed. My stomach and esophagus have permanent nerve damage. I have lost the frontal laryngeal nerve. So there are some song notes I cannot reach any more.

This has been a long progressing problem that I have been able to deal with and basically lead a normal life through until the brain injury part. I have gotten to be a scientist, a race car driver, an education specialist, an editor, a writer, a transport truck driver, a driving instructor, a musician, and an artist. Plus a few more things in between. I have fulfilled everyone of my dreams in life. I have traveled the world. I want for nothing and I have fun. I have a great and fantastic life even with my limitations. Plus to this day I am coming up with new dreams to fulfill.

Today I live quite normally and look and act fine, but seem to be over weight. It is a weird side-effect off all the meds etc. But I go through periods where I can actually get my weight back to normal often so when folks see me I may be fat or may be thinner depending on which months they see me in. It is a daily work for me with my weight. I keep food diaries and monitor my blood and meds like a religion.

I am the ultimate human experiment. All the specialists want to research me. The person that has helped me the most was my own Grandfather. He was a histologist at Sunnybrook and had done a lot of research on these problems through the years, and my specialists use his notes to help me 23 yrs after his death. He never knew me with these problems and he would have never ever expected that his last years of research would have saved my life.

I am a cheery and very greatful person for my life. I don't let any of this stuff identify me as a person and I know I am a better person for the knowledge I have gained through this weirdness of my life, and I have been very proactive in the research of my issues. I use all of my own education to keep copious research data for my med team, and I get to be active in my own research and care.
I would not be a blogger or and Etsy crafter or a Needle Felting Manual writer or a seminar teacher or a writer of brain injury recovery manuals if none of this happened to me.

Once in a while I get a curve ball in my medical condition that puts me in a life or death situation. That happened Friday.
I had been having some Nephrotic distress (kidney issues) for the last three weeks. Then I had some problems with my lower colon, and these were being investigated in the regular timely fashion. Urine, blood, ultra sound and booking a sigmoidoscopy. All very routine. Then suddenly on Friday my vitals went to shit.
My blood pressure went wonky. Low number was too low and high number was elevating. My sugar went from 7.4mmol to 11.00mmol then to 8.00mmol then started to climb steady and my sugar is always 6 -6.3mmol. My heart rate was high then low, then high then low and nothing would stay steady and I was nearly unconscious. I could not smile and my left eye was drooping and my face was numb. My tongue was sparking like I was licking a battery. My vision was blurred and my mouth was so dry. I was having a hard time speaking and later I got a migraine that transected my head from ear to ear and involved my whole face.
I was having huge neural reactions and I started spasming in my face and knees. Besides having numb shins and numb hands. I got freezing cold and I could not keep my head up. It felt like I was in a weird dreamy state too.

I thought I was having a stroke.

After 12 hours in the hospital the conclusion was that I had an allergic reaction to a new diabetic drug I was trying called Januvia which is a gut hormone which can help with weight gain issues and control sugar if necessary. This is only for folks who are conrolled if you get Januvia alone.

Once I was more stable and out of danger I was sent home on observation.

By this morning I was feeling more normal and I am worn out, like I have been running a marathon.

Next week will mean a week at Sunnybrook Hospital with all the specialists deciding the next plan of action. Lots of meetings and a ton of $18.00/day parking bills to contend with.

Thanks to everyone who sent me well wishes. Thanks to my Husband who just happened to be home on a holiday day when it all went aweful, and thanks to my kids who kept in touch throughout the ordeal and were home waiting when I got back. Thanks to Amber who drove in to help my son Alex who did not go back to Peterborough after work on Friday, and to Cam who kept Alex informed.

I will be low key this week and I am hoping to return to my normal routine by next Saturday.
If I don't satisfy folks by talking to them on the phone this week I am apologizing up front, because I am not gonna be in the mood to do much this week after the huge daily commute to the trauma centre all week for follow-up.

So I am not dead and I didn't have a heart attack or a stroke. I am the same as I ever was, but had a bad allergic reaction, and in the mean time we now know that the Nephrotic irritation is not a bad infection as we did do the labs that were missing while I was in the hospital. So now I just need a bit of rest and to figure out the diabetic treatment we will use for the next few weeks.

So unfortunately my artwork did not go up in value this week cuz I am not dying today LOL.

And believe I am putting the problem behind me. :)

1 comment:

Chris (remoteplanet) said...

And here I thought you were rushed to the hospital after someone handed you a cheque for $49.8 million! I'm glad to hear you are home and clear from the allergic reaction, my friend. Rest well! - Chris