Thursday, October 17, 2013

This and That

I'm puzzled as to what is happening in my body. I went in Tuesday morning for the lung functioning tests. The people at the hospital were so kind. The respiratory therapist grew up in the same area I did, although we didn't settle in the area until I was in 4th grade due to my Dad being in the Air Force. It was fun to talk about how things were back then and nice to meet someone from the same area.  

I was only a little nervous until she weighed me. My weight has dropped to 114 pounds (I'm 5'8 1/2). And that's fully clothed with shoes on. Once I saw my weight had dropped again my anxiety increased.

The only thing I can think of is that I'd eliminated Ensure and Boost drinks due to cost. I was drinking 2-3 per day so as to increase my caloric intake in the hopes I would put on weight.  I've lost so much muscle and can't seem to get it back. I'm basically skin and bones at this point. I can't afford to lose anymore weight. I went to the store after the test and bought some Ensure. It's $11.88 for six bottles.

The test itself wasn't bad. She said that the diffusion capacity looked good but I had to wonder about her silence regarding the other test. She had me repeat that part 7 times. I know the test is supposed to be repeated a minimum of 3 times but forget why.

When I left I looked back at her to say goodbye. The expression on her face caught me off guard. It was a mixture of sadness and concern. I don't know if it was because of my circumstances or whether she could sense how alone and sad I feel or what but it had me wondering a little about whether one part of the lung function test was abnormal.

Yesterday I woke up feeling that tightness in my chest again but also had a mild case of vertigo. I went to sit down and couldn't figure out spatially where I was so I started to fall forward but caught myself. At one point I felt faint and nauseated so I laid down for awhile.

The shortness of breath this morning was a bit worse. Coughing made it worse for reasons I don't understand. I can feel the congestion or inflammation or whatever it is. After I'd cough I'd have a tiny bit of difficulty breathing and would feel anxious and wished I had an inhaler. Is this allergies, asthma or what?  I really hope its not COPD or Pulmonary Fibrosis.

I've also been nursing a toothache for awhile. I'd been gargling with warm salt water and then colloidal silver but it hasn't helped. It hurts to bite down on part of the tooth. I do not have dental insurance. I tried researching dental plans last night but was too exhausted to concentrate for long. I have no idea if its worth it to purchase it or not. Some have lengthy wait periods.

I'm having that crushing exhaustion and had to cancel therapy as well as social plans again. I cried. This stupid illness keeps getting in the way of my attempts to develop local friends.

Last night I was panicking about money. A root canal plus crown can cost as much as $1800 or more. I don't know how much the lung functioning testing will cost me. I kept having to calm myself down and tried to tell myself that somehow this will all work out.

The brakes on my car need replacing. The brake light keeps coming on.  I live too far from a bus stop to walk plus its not in a safe area.

There are so many people who are in the same financial predicament as I am. Many are worse off. I'm extremely grateful for what I do have but its definitely not the life I had planned. I'm going to make the best out of my life regardless. I just wish it were easier. I wish this illness was recognized. If it were I'd be able to go to a local doctor and actually get help instead of being brushed off.

I'm sure this is all related to M.E.  At least I hope it is.

It has taken me quite awhile to adjust to my financial situation. I don't know the tricks to save money yet but I'm trying to learn. If I could I'd go to the dental school in San Francisco but SF is more than 4 miles away.

While things are a bit tough at the moment I know this too shall pass. What I need is some way to bring in money. I have an idea which involves building a website. One challenging thing for me is to ask for help. I've gotten better at it but its still tough.

I am enjoying Autumn here though. The temperature has been perfect. Just warm enough but not too warm. I fell asleep in the sun yesterday.


1 comment:

  1. HHS awards contract to Institute of Medicine to redefine ME/CFS

    The outcome has already been established by precedent through the rulings of the IOM PANEL on CFS for the last 10 years.

    They have thoroughly examined the evidence and in each ruling on CFS has been the same. To overrule their statement of facts based on the evidence, would mean that they would be require to rescind all the evidence and statement of facts for each report’s conclusion.

    Would a court of law proceed in such fashion? No! Neither will they.

    Vernon has betrayed the CFS Patients and put them at extreme risk.

    Do you expect that the IOM will overrule their own 10 years of rulings on CFS?

    Ask HSS Sebelius: Do you believe that another IOM Panel on ME/CFS based on the fact that they have consistenly ruled by findings of facts over the last ten years including the latest 2013 VA IOM report, that CBT/GET are the most effective therapies for CFS and that immunotherapy and antiviral therapy are ineffective with regards to treatment?

    This is their rulings from 2001 to 2013 from all evidence considered:

    "Chronic fatigue For Gulf War veterans who meet the criteria for diagnosis of syndrome (CFS) CFS, the committee recommends:

    • use of cognitive behavioral therapy and exercise therapies
    because they are likely to be beneficial;

    • monitoring the results of studies of the efficacy and
    effectiveness of NADH, dietary supplements,
    corticosteroids, and antidepressants other than SSRIs;

    • because immunotherapy and prolonged rest are unlikely
    to be beneficial, they should not be used as treatments;

    • SSRIs are unlikely to be beneficial and are not
    recommended unless they are used as treatment for
    persons with concurrent major depression; and

    • treatments effective for CFS should be evaluated in Gulf
    War veterans who meet the criteria for CFS."

    This is what the IOM thought about CFS and ME in January of this year in their 2013 Report on Chronic Multisymptom Illness

    (formerly Gulf War Illness). The IOM accepts without question a 2001 work by Wessely’s crony Michael Sharpe claiming ME is

    a “functional somatic syndrome” (psychosomatic). The IOM believes ME is just another name for CFS.

    “The common thread among the terms is that symptoms experienced by patients cannot be explained as pathologically defined, or organic, disease (Sharpe and Carson, 2001). Such syndromes as irritable bowel syndrome (IBS), chronic fatigue syndrome

    (CFS, also called myalgic encephalomyelitis), and fibromyalgia often are included in this group of unexplained illnesses,

    as are chronic unexplained symptoms that do not meet case definitions for IBS, CFS, fibromyalgia, and other functional
    somatic syndromes that have specified diagnostic criteria


    http://thoughtsaboutme.com/2013/10/16/opening-pandoras-box-pandora-cozies-up-to-iom/

    http://www.occupycfs.com/2013/09/

    http://www.cfstreatmentguide.com/blog.html

    http://www.cortjohnson.org/blog/2013/09/03/definition-coup-feds-trample-cfsac-farm-consensus-chronic-fatigue-syndrome-definition-suspect-group-action-needed/

    Spread the word;sign the petitions

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