kam
Honored Contributor (10K+ posts)
Member # 3410
posted
While on Face book a friend asked me why I moved from a home and town I loved.
I decided it was time to write my story. First I need to fast forward to when my symptoms became too great for me to work or do household chores.
The symptoms became to great for me to work or do household chores in Sept/Oct 2001.
First it was headaches that the migraine meds did not touch. I had had migraines for years but this was different. I was missing work because of them.
I also was so exhausted I could not finish out a work week and started calling in vacation days.
Then, there was the bouncing off of the walls as if I were drunk and not being able to stand or sit upright or make a cup of coffee or take a shower or clean up in the kitchen.
I felt like I had the flu but different than any flu I had ever had before. Two weeks went by and I was feeling better.
I went for my morning walk. It was maybe 5 minutes into the walk that I was not sure I was going to be able to make it home. The brain was struggling to tell the legs to move. I talked myself back home.
I learned that I could walk a bit at times until I had to lay down on the sidewalk to recover. Then, I could get back up and walk home.
There also was the feeling I had been hit by a fully loaded semi truck, floaters, tail bone pain, one side of the face as if it had been to the dentist and had a shot of Novocain, trying to go to the grocery store and not remembering how to get home…driving down alleys and roads hoping to find something to help trigger how to get home.
There also was the pain in the gut and I am sure a lot of other symptoms that I will recall later.
I could cry for the inability to walk down the hallway. But, it took years before I admitted to myself the brain was also not working well and in a fog most of the time.
I had had some of these symptoms before. They would come and go. They would stop me in my tracks for a day or two but never for this long.
In the past, doctors were of no help. This time I needed to find what was causing this and get treatment. I lost count at 30 specialist. I did notice they all worked out of the same limited tool box.
While coming out of UCSF Medical clinic I happened to look at my reflection in the mirror of a large building. I looked fine.
It dawned on me the doctor’s could not see how I was feeling inside. The things I was dealing with the medical tool box that insurance provided had no way of measuring or testing unless they did a brain spect scan.
but that still is something that is out of pocket to this day and not in the small medical tool box insurance allows doctor’s to work with when it comes to things attacking the inside of the body.
There is so much more I could write but this is most likely long enough. After 2 years, I did find 3 doctor’s who knew enough to diagnose me with lyme disease. Two were out of pocket. Testing was out of pocket.
One was with Samsun Clinic in Santa Barbara but my insurance ran out before I was able to continue to see him.
He warned me to be prepared that many in the medical field do not believe in Lyme Disease and sent me on my way.
He was right. I had positive tests from Igenex Lab in CA, all the symptoms on the check off list, and a positive diagnosis from a LLMD but I was still not able to get help thru insurance or doctor’s who took my insurance.
I have been bedridden for the most part since 2001. I hate to say that. I hate to accept that.
I saw a doctor who recently started practicing in AZ. Cost would be $40,000 for 8 weeks of IV treatment. Babesia (sp?) tests came back positive still.
I knew I had it as I have times in the summer when I need to turn on the heater and times in the winter when I need to turn on the air conditioning due to chills and being overheated plus other symptoms.
I use a power chair to get around but still need to keep my outings short.
Now, back to the reason I started typing my story. Why I moved from my home and area that I loved.
Hell if I know. I think of moving back but do not have the health to move or a doctor in the area that would take medicare and treat lyme disease.
I also think it would be too difficult emotionally even if I had the finances to move back. It was a different time. My health was much better and I was able to do so much more.
I wonder if I could handle the fog. I wonder if I could handle the sound of the waves. I wonder how the area is for wheel chair access.
I know there are too many people in the area now and I need small towns to live in.
But, my mind goes back there a lot. Back to the places I use to visit. I need to be around nature. There are lots of wonderful places to be around nature in what I call my home town.
Where I live now, I have yet to see a tick. I can drive 3 miles and be in a beautiful forest area with large boulders. Good medicine.
My hope is to get a van to transport my power chair and to purchase a small home in the forest. That keeps me going.
How, I am going to do this financially I have yet to figure out.
How to improve my health. Now, that is another obstacle to overcome. Even if I had the $40,000 would I do what this LLMD wants me to do? Would it help?
I have had too many days while on meds where I wanted to end things. I have had too many days off of meds where I wanted to end things. It goes with having this disease.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Kam,
I am glad you wrote this. Sometimes just writing down your thoughts helps with all the emotions that come with Lyme and company.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
good story.
What is your current computer situation Kam???
We have missed your smiling face here lately
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Using old CPU computer with issues. Just use it for short period of time. Try and shut it down before it shuts itself down.
It has other issues too so frustration level is high while using it.
Just got internet reconnected.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
What is L.E.A.F.? I am glad you wrote your story. Hope you feel better and get the help you need.
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
FB page.
I think it stands for Lyme Education and Fellowship.
Really like the lady who started the page. I was story 70 something.
My story was not clear but at least I got something written after wanting to since she first started the FB site.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Kam, I would like to say that since I have been on here in the last almost 3 years?? you seem to have come a long way with your writing. You used to
write fragments and had a lot of head pressure. Do you feel like you are coming out of that more? I am glad that you are able to write more. The brain stuff can be so frustrating like the rest of the crud.
Posts: 294 | From southwest mi | Registered: Dec 2012
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Thanks Kam for sharing your story.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks. I do not feel this is well written but did what i could when i could.
writing is still out most of the time
thankfully head pressure is not like it use to be....still not sure what was causing that.
just know when we had to evacuate the apartments and live at a hotel ...about 2 weeks into staying at the hotel the head pressure lifted.
I tossed out my old mattress and gave away my couch and had someone come in and do a good cleaning in the apartment.
Plus new carpet was put in.
Rumor has it the first time the ceiling fell thru that repairs were not done correctly which makes sense as to why...the building was condemned and many of the walls were torn out the second time the ceiling fell thru from the 3rd floor to the 2nd floor.
There may have been mold spores spreading throughout the ducts.
I still am not doing as well as I was at the hotel. One theory is I had more help at the hotel.
Meals were provided. CAregiver did the laundry and grocery shopping as I alway wasn't able to eat what was provided due to gluten free no sugar food intake.
Housekeeping cleaned and changed bedding once a week...although floors/carpets in the hotel room were black with filth...
they said i could move out for a few days while the carpets were shampooed and dried but factored in the energy to move out and back in vs staying and i stayed
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think I missed my point that i had a bullseye rash in 1984 which was hindsight..i knew fatigue was much worse ...
but docs were not able to help
derms were not able to identify the rash
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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