non-subject: into the flow
AWW, 5/01/13
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My mother's name was Flo.
I use the tense "was" because Mom is dead. But I feel strange using the term "was." She "is" still Flo Hamby. That will never change. There will never be another Flo Rae Drum Hamby. Yet, she now "is" a "was."
This past weekend, the last weekend of April, 2013, after hanging up the phone at the end of a conversation with my mother-in-law, I said to my husband, "I wish I wouldn't end up talking about my health. I don't like that I end up talking about it in conversations with people."
He responded calmly, "It's what you are going through. It's what is happening in your life. It's normal to discuss it."
Still, I don't like that I talk about it. Why can't I be the example of a deeply grateful individual that speaks no negatives, only gratitude in spite of life's onslaughts of hardships.
Today after Daniel saw both my wrists in support braces, he asked, "What happened? Was it dogs?"
"No," I responded, "It's a long story." We talked about something else until a bit later. I can't recall now if Daniel asked again or if I volunteered part of the recent medical nightmare I'd been through.
Daniel responded, "Have you ever studied Buddhism?"
"I've not studied it, but I'm familiar with it."
"I think it might help you," he replied.
I retorted something like, "Do you think I'm asking you for help?"
I've been angry the past couple months. Yesterday, I was clear about my anger. Today, the anger was muddled; it wasn't a healthy anger.
I feel I have to defend myself. Why do I feel that way and what do I need to defend against?
Maybe I'm most angry with myself for getting on the American medical merry-go-round. There is nothing merry about it.
Shouldn't I be thankful for the doctors? Doctors who have passed me around telling me all my tests are normal though clearly both my hands and both my feet and both my legs and both my arms aren't working properly.
Shouldn't I have gratitude for my general practitioner? The one that denied me the medication that gives me respite, a medication which is not addictive and instead prescribed Xanax. I then went online searching for hours for a reputable pharmacy from which to order my medication overseas even though I have 100% insurance coverage in the States. Insane.
Only God knows how many hours and days and months I've spent researching serum sickness the last two years trying to understand and find a remedy for this prolonged disability. But serum sickness should have cleared by now.
Yet, from May, 2011, through March, 2013, not one of the damn diagnosticians who call themselves doctors ever suggested I see a neurologist. I suggested it.
Shouldn't I be grateful for the one neuroloigist in April who drew nine vials of blood for labs and performed a nerve connectivity test and then gave me the results: "normal;" and then showed me the door because the tests trump my symptoms?
Shouldn't I just passively accept the verdict and continue to suffer and switch to ordering my medications from overseas? Of course not; that's insane too.
Since the neurologist and general practitioner nightmare two weeks ago, I've spent hours and days re-researching to figure out what is going on only to discover others with similar symptoms have been down similar paths of American medical doctor roulette; only to discover that I probably never had serum sickness but rather small fiber neuropathy; only to discover that with small fiber neuropathy all the typical neuropathy tests are normal, and in fact symptoms in spite of normal test results are a pretty sure sign that the diagnosis is small fiber neuropathy.
Why did the neurologist not look deeper?
What is my insurance paying for?
Instead of paying the merry-go-round operators, should it rather be paying me for my hours of research trying to figure out what's wrong with me?
You god damn diagnosticians! You aren't physicians or healers, you are technicians and you treat people like machines.
Damn straight I'm pissed.
Probably a better response when people ask, "How are you?" is "I'm well, though the definition of well can change on a daily basis."
[end rant]
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I need to get calm before my upcoming appointment next week with a new neurologist.
Universe...I'm doing the best I can with what I've got.
Your law is abundance; it's everywhere.
Your law is balance; I want mine back if possible.
Maybe for the rest of my life I'll have to stop at each stair case and get my footing before taking a step.
Maybe I'll have to use two hands to pick up the coffee cup.
Maybe I'll have to ask for assistance to open the water bottle or certain doorknobs.
Maybe someone else will have to cut the vegetables.
I will accept those, if it must be.
But, I do no have to accept being treated like a machine.
Universe, I know there are good doctors out there. I simply request an entrance.
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19 comments:
You know the 5 stages of grief . . . anger is one of them and though the stages typically relate to the topic of death, I find them applicable in areas outside of actual physical death. Your body is grieving, so is your mind. I think that bouts of anger can be about our truth, our reality. Your life changed and although our lives are always in a constant state of change, traumatic change changes everything. I know most of us were raised to avoid &/or deny anger. But isn't a certain amount of it required, even necessary, healthy in fact? Perhaps it (the anger) helps you to keep going, to keep searching. Don't expect more from yourself (like being grateful and thankful to every Dr. you encounter)than you can give right now. (((gentle hugs)))
A--f-ing--men!
Carol, no doubt your own body can frustrate the hell out of you. You live with it, you think you know it, and then it goes wacko and you have to bear the painful burden that is so much heavier when it hurts constantly and no "professional" seems to know how to make it stop...or can even tell you why it's hurting.
"What the crap kind of medical school did you fucking go to and did you pay ANY goddamn attention in pain management?"
That felt good! I had six more shots in my back this morning, that makes 12 at my current pain management doctors clinic, without anesthesia, and right now I'm not feeling any better than I did before I ever went to get them.
Five years ago I had just four one morning at another doctor's office and felt no pain until a few months ago. Yes, I'm very frustrated today also.
Hugs and best wishes you get some answers and relief soon! I'm hugging me too right now too...I just took another pain pill and I HATE them. :D
Thanks Zoe...
I have recognized grief in the past months due to loss of function, but I hadn't related the non-specific anger I've experienced with the stages of grief. Light bulb moment! Thank you for that!
Years ago after leaving The Way, one of the largest side effects of leaving was grief...I felt so much loss. I had felt it while in The Way too, but it came full circle after leaving.
As my manner is, I went book hunting for information on grief. I was looking for information that dealt with grief from loss, not necessarily grief due to physical death. The book I ended up with is "Good Grief" by Deborah Corvell. I probably should see if it is around here somewhere, or if it disappeared into the loan darkness never to be seen again. ;)
Yes, the recent anger has been a catalyst for answers. Just to allow myself to feel the anger has been an accomplishment. I'm endeavoring to use that energy for good, and I think I'm finally succeeding in that category and making headway.
Thank you again!
<3
*chuckle* Thanks Denise! <3
Omg Anna. I'm gently hugging you too! I hope relief comes soon.
I wince (understatement) at 6 shots in the back.
Will be sending good vibes/prayers for you and seeing you caring for those beautiful flowers on your porch.
<3
Thanks Carol! Sorry I went off on your post yesterday but the "deadening" had worn off and I realized I was in for the severe pain for three more weeks.
I was diagnosed with arthritis when I was six years old, the reason I took piano lessons for 11 years. That doctor told me to "use it or lose it." It still gets bad in my hands if I overdo it. The back problem started about six years ago.
I had to have a disk replaced in my neck years ago arthritis disintegrated, evidently from an injury I got being thrown off a horse. That worked great...but the area they took the bone from in my hip was the worst pain I have ever felt.
The arthritis in my spine has not disintegrated the discs, just causes severe pain off and on. The first doctor who gave me the shots, cauterized the nerves saying it might last as long as two years, then I could get it done again. Total relief instantly for five years.
This doctor claims "they" require him to give all these shots I have gotten this time to determine which nerves need to be cauterized, and in between visits, I have to go to his office and pay "specialist" fees again o discuss it with him. They are not meant to be "permanent,"...just "diagnostic."
My question is to no one who will listen, "How come the first doctor didn't have to put me through all this misery and expense and knew exactly which nerves to cauterize?"
Progress in medicine? I can't feel it!
I'm hoping you will find some relief Carol. I know you have been dealing with this for a very long time with no answers. I just even imagine the frustration you must feel at times!
Hang in there and I love you!
April
should have been "can't imagine" the frustration...
April
Aww...I didn't feel you went off on my post. So no problem, but thank you!
Six years old! Oh my. And you are still trucking baby. You inspire me and I'm sure you inspire your family and friends.
I saw a cartoon the other day regarding silent illnesses. It's point was that we don't know who is suffering as we are out and about in life. It's something I think about regularly. So many illnesses are "silent." That is, physically in day to day life, we can't readily see the outcome of symptoms of chronic illnesses.
I think about that when I get behind a very slow car or someone who parked crookedly or a shopping cart left out in the lot. (Though shopping carts in parking lots are one of my pet peeves.) Instead of criticizing, I recall all the accounts in my own life where I didn't physically have the ability to drive as fast as the speed limit or to park the car straight or to get the cart back to the buggy bin.
On another note, I hear you regarding the question about "how come" with the first doctor. Healthcare has become way too complex.
I don't expect doctors to "fix" me. I have expected that they would have compassion to help relieve symptoms and to listen, listen, listen and then draw upon their experiences and knowledge. Then to offer options from that, not dictate options. (Well, there might be a time for dicatating in a life/death type situation.)
I was talking with my chiropractor/homeopath the other day about my dissatisfaction with how things have been handled with my case. He responded something like, "You have to remember, that these doctors are conventional and will respond according to their reductionist training."
I'm off to see the new neurologist in about 20 minutes. I have my health narrative relaying the last two years typed out along with bullet points of my recent and past history.
Also, the acupuncture & Chinese herbs seem to be working. I felt a definitive shift after my 3rd acupuncture treatment and my inflammation has gone down significantly. Saturday, a friend offered to pray aloud for me...and I accepted the offer. After the prayer, I could make a fist with both hands...not a tight fist, but any fist is a notable feat. I'll accept it. ;D
Hoping you find relief soon Anna and are able to enjoy the gardening.
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I love you too April!!
TY for your heart and friendship. I am sooooo glad our paths came together. I love you girl!!! xoxo
:)
Thanks Carol, and you are correct, there are likely a lot of folks out there suffering from "silent" illnesses no one knows about until someone like you gives them a forum to complain. Thanks for that!
I do think all the pain I've suffered has raised my pain threshold a lot. I remember doctors being astounded at my Dad, never wanting pain medication, not even to get stitched up. I wonder now if he suffered pain a lot more than he never told anyone about.
I probably shouldn't mention this, but oh well...I still think of it and laugh. Decades ago, I went to a Chinese acupuncturist to get a few pricks to see if it would help me quit smoking. OMG! I raced out of that clinic so hungry for Pizza that morning I made several stops until I found a Pizza place open to satisfy that sudden strange craving. Didn't do anything to make me want to quit smoking though. Guess he hit the wrong nerve, the " eat more pizza" one instead of the "stop smoking" one Never did go back to get any more pricks.
I'm very happy you are getting some relief from yours. I suppose it's like good doctors and bad doctors...you are very lucky when you get someone that knows what they are doing. Good Luck! I've had some crappy in my day, but oh well, I can still sprinkle rainbows and cram a lot of color into small spaces so I feel I'm doing alright.:)
If only.
You mentioned your friend praying. If only (regardless of belief) doctors realized that listening is if you will, like a prayer.
Prayer - giving voice (again regardless of one's beliefs)
Prayer - listening (again regardless of one's beliefs)
Prayer - a type of communication, hence connection . . . so often answers are some where in there but due to a lack of communication, no connection is made. I think compassion comes out of all of it. (Strange Forrest Gump moment happened when I wrote that.) :-)
One of my observations in both my own life and the life of others is that pain, infirmity, emotional and mental health finds relief and a lowering of stress when whoever it is, a friend, a doctor and alternative health care provider honours our presence whether they know what is going on or not. Think about it, not only is chronic illness/pain invisible, so are we. When someone touches us, allows us to give voice and listens to us we are, well, healed. Not necessarily a "healing" but we are seen, we are heard, we are touched, all of which lower our stress and allow the body to do its thing, often moderating our health, our minds, even if only for a moment, a day, or longer. Any relief a welcomed relief.
There is an art to medicine I think and the medicine that exists today seems more like a machine.
I hope your visit with the neurologist goes well Carol and Anna I see you are also in great pain. I'm a gardener too. :-)
Anna...that is funny about the pizza. Interestingly, after two of my acupuncture sessions, I too was hungry. I was also very relaxed after those two particular sessions. Yes, I am fortunate to have found (what appears to be) someone who knows his profession well.
Love this line Anna: "I can still sprinkle rainbows and cram a lot of color into small spaces so I feel I'm doing alright."
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Beautifully stated Zoe and I agree. Giving voice is (for me) a type of prayer (regardless of belief). I'm thankful that the friend who offered me prayer isn't dogmatic. They have been reading my blog and were aware of the situation. I was the one that called the person and in the course of the conversation, they respectfully asked if I would allow them to pray (aloud over the phone) for me.
Funny side note here: My now-deceased mother's rheumatologist was Dr. Payne. Her mental healh therapist was Dr. Downs. I just always thought that was so ironic. ;D
So....the new neurologist is wonderful (so far). He appears very knowledgeable and is personable. I finally (after 2 years) have a diagnosis and he is running some different lab tests to try to get to the cause.
His diagnosis (thus far) is polyradiculitis and peripheral neuropathy. I have nerve damage. I asked him if my body can heal itself in that regard. He answered that it can, if we can find the underlying cause and treat the cause.
He is fine with my being on the low dose steroids and didn't object to the acupuncture or any of the supplements I am taking (other than B6, because my levels were high and that can cause neuropathy). Depending on lab results, I may get two steroid injections into my spine at the nerve roots (which is, according to his diagnosis, where the symptoms are actually coming from).
He will not leave me high and dry, but said we will continue to dig until we can find some resolution. He won't just leave me hanging out to dry, so to speak.
When I asked about my previous nerve connectivity test being normal, he replied, "It was wrong." He performed a nerve connectivity test and another eletro diagnostic test. Showing me the results between my results and what my results would look like if I didn't have a problem.
I'm pleased. He wore no white coat, but rather his regular clothes and introduced himself by his first name: "Hi, I'm Andreas." He didn't introduce himself by his title: "Hi, I'm Dr. Neurology."
I go back again in two weeks.
Sounds positive. (((hugs))
Very happy you feel you finally have the correct diagnosis and a doctor willing to resolve it for you. That's progress! Good Luck!
Thanks ladies.
And thanks for keeping up with this subject.
I know ya'll have so much you are dealing with yourselves, in the category of pain.
Hugs all around...and Happy Mother's Day!!
<3
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