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grobbink
Member in Phase 2
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Posted: Sun May 25th, 2008 02:20 |
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My mother always told me that I was a weak child. She just assumed that was due to my father's poor health and his death from TB when I was a year old. She would allow me to sleep in, since I seemed to need more rest than other children.
I developed bladder and kidney infections when I was around 11. They continued for years. I also had ear infections on a constant basis. I had my first surgery when I was 20. I had 3 cold nodules in the right lobe of my thyroid, which they removed and I was put on thyroid meds for a couple of years.
Because I moved around so much in my work, and the tests came back normal, the new doc took me off the meds. Years later, I was flying to an appointment and was just rubbing my neck and panicked when I felt lumps on the left side. I had fine needle aspirates to take out the fluids, and it helped lessen the goiters that was forming.
The lab results always came back negative for cancer. But after a while the scar tissue built up and surgery was needed. For this surgery I waited until I found a surgeon that promised me that that he could save the two parathyroids I had left. So for about 1 year I went around with a large lump on my neck, my employees in the lab, used to make fun of the fact that I didn't just have a double chin, but a triple chin. When I went into medical sales my new boss told me "You've got to get rid of that thing, it looks terrible".
Looking back on my history of ill health and all the surgeries that I've had, as well as being diagnosed with fibromyalgia, because they couldn't find anything wrong with my blood tests, it is obvious to me that my illness was coming to a head.
Oddly enough it was a well meaning physicians assistant that brought it to a head. She was worried because I had a fall and had a major compound fracture of my right leg and ankle and had to have plates and screws put in to ensure that I would be able to walk again. She wanted to make sure that I got enough vitamin D since she thought I was suffering from osteoporosis and put me on 80,000 units of Vitamin D every other week. I was on that for about a month.
One night I had terrible pains in my right shoulder and it radiated to my mid and left upper back and down my left arm and into my jaw. I had my friend take me to emergency at the local hospital and they said " Well you're not having a heart attach, so we're going to send you home. We don't know what is causing the pain we recommend that you see your doctor as soon as possible."
When I got home the pain got even worse, and since I had pain meds for my ankle I took enough to subside the pain and put me to sleep. I remember walking around the room screaming about every minute, it seemed to help me handle the pain. Long story short, went to have X-rays, MRI, and was told I had cancer of the liver. Boy, I just shut down for about 3 months.
Finally found a liver specialists, he looked at the MRI and I'll always remember him setting on the edge of the exam table with his arms folded in his white lab coat saying "I not sure, but I'm almost 100% certain you don't have cancer. We'll do a biopsy." Just that statement alone made me come back to life. I had a reprieve. Diagnosis from the 8 biopsies was systemic sarcoidosis of the liver.
My liver specialists then told me that there was nothing he could do for me and from there I went to a rheumatologist that told me that I was in remission since my ACE test came back within a normal range. So there, I was happy as could be. Still going to doctors to see what I could do to help with my fatigue and joint flare ups that would keep me in bed for days.
Found another nice doctor, told me he wanted me to go on Omega 3, 4 gms a day. He thought that would help my liver out, since he did know my medical history. I was on that for about 1 month and then the pain set in again. This time it was different, I felt like everything within my chest wall was inflamed. I stopped taking the Omega 3, found another doctor to talk about the inflammation and pain. Blood tests didn't come back with anything unusual, of course it must all be in my head.
Went to the rheumatologist and he ran a CRP, and told me to go to a heart specialist since it was elevated and of course my liver functions were elevated but that was to be expected since I had sarcoidosis of the liver. Went back to the liver specialist and ask that they run more tests, he did another MRI, and came back saying the 13 granulomas are still there and I still can't help you if you don't have cancer.
Went back to the doctor that sent me to the rheumatologist, with my sister, she told him that she had to listen to me at night and during the day and how much pain I was in, and she wanted him to do something. He told me I should take I on the pains meds I had for my ankle. I said "Isn't that all bad for my liver, don't you see that I have liver disease". "Well", he said "I don't consider sarcoidosis of the liver a liver disease". I guess that's when I realized that my case was hopeless and I wasn't going to find anyone that could help me.
After my sister left and went back to her home in California, I had a sarcoid flare. My joints hurt everything hurt, I was so afraid and I didn't know where to turn, I figured I had a couple of painful years before my liver gave out on me, so all I could see was death for my future and not a pain free one at that.
I had looked on the Internet for at least a year to find info about sarcoidosis and it only explained the disease and that there was no cure, and most of the time it went into remission. I also had read a blog by a young boy that had pulmonary sarcoidosis and I continued to go back to that site to read his progress, and the last entry was put in by someone else, telling us when he had died.
While I was having the sarcoid flare, I stayed in bed for 3 days, and during those 3 days I prayed and prayed asking God for a miracle to cure me. On the 4th day I got up and went to my computer. I thought, one more time I'll look and see what I can find. I put in a search for support groups and the Marshall Protocol came up. When I read about the vitamin D, and having experienced what I had, I knew this would be my miracle. I'm very grateful that it was/is available for me. With the lab, immunohistochemistry and molecular biology background I have, it makes sense to me.
It took me months to find a doctor that would help me and he still is not certain about the MP, but at least he helps me though the passages I need to take. Hopefully when I'm cured of this terrible disease, he will be a believer too.
grobbink
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Sarcoidosis/liver, 13 granulomas/ thyroid disease Nature-throid/ FMS /Ph1Feb08 NoIRs cover up low lux home light exp r/t work airtravel every other week/ 25D;18 (4/08)
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Deb Grabetz
Member in Phase 3
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Posted: Sun May 25th, 2008 16:50 |
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Hello G--
It was truly heartwarming to read about your lifelong struggle and see that you are here-- on MP-- don't worry about anyone having to convince your doctor of anything. In time your treatment with MP will surely make him a believer. My doc told me many months ago how I too had found my miracle! Your story G will encourage others who have been this ill-- not to give up hope. Thank you for sharing your story with us and if I can ever be of help to you please write!
Your story caught my eye (and  ) as I went through something very similar just before finding MP-- I had been bedridden for four months and on Prednisone trying to fight off this second flare I was in--I finally let go and handed it to our Higher Power--shortly after I received a note from Meg about the MP--and the rest is history! I continue to make progress and so will you!!!! Believe it! Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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grobbink
Member in Phase 2
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Posted: Sun May 25th, 2008 21:09 |
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I want to thank all those people that read my story and have shared their hopes and support for me in regards to the MP. When I prayed to find my miracle I never dreamed it would be such a large support group, plus the help of those that monitor the site, and of course Dr. Marshall for researching and developing the protocol.
I don't know if it is appropriate, but I would like to post a poem that I wrote when going through a rough patch. I feel the last verse is the reality of the MP coming true for me.
.... Pain .....
My pain brings me wisdom.
My pain lets me see,
there is no world of difference,
that separates you from me.
The path is well traveled and marked with light.
The fire of pain has lit up my flight.
It forces me to see things I never wanted to know,
that the further I travel the less distance I go.
To understand others is an important must,
but to understand yourself, is the beginning thrust.
The fight is not easy, the suffering is not grand.
We all have our cross to bear as we reach out our hand.
As much as I want the pain to go away,
it teaches me knowledge day after day.
It shows me compassion for those weaker than I.
It gives me wisdom and I won’t ask why.
I want to hold on to this understanding,
to feel more than I ever thought of grasping.
To have empathy isn't enough,
action is needed of just the right stuff.
Give me the vision to see the unseen,
those feelings hidden within and between,
that keep me from understanding my confusion,
so that my truth is no longer an illusion.
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Sarcoidosis/liver, 13 granulomas/ thyroid disease Nature-throid/ FMS /Ph1Feb08 NoIRs cover up low lux home light exp r/t work airtravel every other week/ 25D;18 (4/08)
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