 For the past two days, I have been posting about my experiences with the medical community and autoimmune diseases. I am hoping that it reaches one person who can use it in their search for answers. Today is the last post on this subject and I will get back to normal stuff!! If you will remember, I ended the last post on a good note, thinking that all was cured and life was going to go back to normal. One might think that would have been the end of it. But no – there was much more to come. Within three months, my heart was racing, I was nervous, I chattered like a Magpie (I only chatter like a Mockingbird, normally) and I could leap tall buildings in a single bound, without the cape! I was hyperthyroid and getting more and more hyper by the day. A second endocrinologist took one look and said, “I’ve never seen anything like this. I don’t know that much about Hashimoto’s, but I’ve never seen anything like this!” That gave me great confidence in how my dollars were being spent and I opted for a third opinion. Endo number three determined that Endo number one had misdiagnosed me and that I actually had Graves Disease and not Hashimoto’s. I asked if one could have both. I have to admit here that I had done enough internet research to know that in rare cases, it is possible. This doctor declared, “Impossible!! They are mutually exclusive!!” He never called me to set up tests and never returned my calls to attempt to set up tests and so I figured that was another copay down the drain and that I didn’t want him either! It was at this point that I suppose I needed abuse to go on top of everything because I made an appointment with my cardiologist, in hopes that he would refer me to a young woman at OU Medical Center whose research on hyperthyroidism had intrigued me. I found her on the internet. Yes I did. In big, blue letters next to her name, the website indicated that she had only been in practice for 8 YEARS, like a warning to run from this sweet, young doctor wannabe. I was not deterred. My visit with the cardiologist began with the normal salutations and he asked me to give a synopsis of my concerns. I synopted and then made the mistake of saying, “I have been doing some of my own research on the internet and have read the book, “Hope For Hashimoto’s” when he looked at the ceiling and said – I kid you not – “Oh God help us!!” He lit into me like the Tasmanian Devil on Bugs Bunny only with gray hair and a stethoscope. Evidently, according to him, I am the kind of patient who wants to treat myself and looks things up on the internet to tell doctors what they need to be doing instead of just trusting them to take care of everything. According to him, I am a doctor hopper who doesn’t get the diagnosis I want and just goes to the next one because I have already determined my treatment. So what if the doctor is inappropriate, or admits ignorance or doesn’t even bother to set up tests? I should have just been satisfied to accept things as they are. He ended his tirade with, “STAY OFF THE INTERNET!!!” I reacted in the way that most women react. I’d like to tell you that I stood up, put my hands on my hips and told him that he was a jerk. I’d like to say that I grabbed my belongings and told him to take a flying leap. But I didn’t. I did what so many women do when they are mad – I cried. And I didn’t just cry. I hiccup cried. I sobbed. I told him that he didn’t know what he was talking about and that sometimes patients have really good reasons for seeking multiple opinions. He blew me off. He told me my heart would be fine, in spite of the high thyroid numbers, that I have Hashimoto’s Disease and that it is not possible to have both Hashi’s and Graves. He assumed that I was wanting a new endocrinologist and hinted that his desire was for me to see his friend of 30 years. I requested the sweet, young thing at OU and he balked. He explained that she had not been a doctor very long. I said that was fine. He said that his friend had been a doctor for very long. I said I didn’t care. He sighed and made the appointment. Then he walked out the door with a last, “Stay off the internet” admonition. I might add here that a few days later I wound up at the ER with Afib and a heart rate of 165 beats per minute, requiring Cardioversion which is basically shocking your heart back into reality. So he was wrong on that count too. I was sorely tempted for the ER doctor to add a note at the bottom of the charts to my cardiologist that said, “She checked on the internet and determined that her heart rate was too fast!!” But that would have been disrespectful….. I have now seen the young doctorette. She is awesome. She is kind, soft-spoken, well-educated and decisive in her observations. She explains in detail and lays out a plan. And she follows through! She even called me at home one morning to give me an update. Her diagnosis? That I have the autoimmune disease that presents itself as BOTH Hashimoto’s and Graves Diseases with both types of antibodies. I’m not nuts after all!!! So, bam, bam, bam, she has set up a million tests that have been taken, meds have been prescribed and I will also be doing a 10 day radiation treatment on my eyes for Thyroid Eye Disease in hopes of nipping that in the bud. It has been a long, long trip, but I feel like I’ve reached a destination point. This will be a life-long battle with my body, but I feel like I now have an advocate who will join with me in the fight. So don’t be afraid to take responsibility for your own health. Nobody cares about you as much as you do – except for God and He has given you the tools to make good decisions that lead you to better care. A great doctor is amazing, but, as in every profession, there are some not so great ones and you don’t have to be satisfied with not so great. I hope that you can gain something from my experiences. It will have been well worth it, then!! And I promise to do a demonstration post next!!  |
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Posts Tagged ‘doctors’
The Final Episode
Thursday, June 21st, 2012
And The Beat Goes On
Wednesday, June 20th, 2012
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Yesterday, I started you onto a short version of my seven year journey into weird diseases. Today is a continuation of that explanation in hopes that someone out there has a lightbulb go off with their own symptoms and is able to get help. I’ll just give you a glimpse of some of the hurdles that have had to be overcome, especially in the medical community, and what led me to write this post. In 2005, my hair began falling out. Shockingly, prior to that, in one year my hair had gone from reddish brown to silvery platinum. (notice I do not say, “gray”!!) My hairdresser was astounded. My doctor was resolute – “Hormones,” he said. But despite replacement therapy and lots of money, my hair kept falling out in handfuls and the next year a dermatologist rendered the verdict that I had male pattern baldness. Rogain was in my forever future, according to this man. As you will see, he was wrong. In the meantime, I had a lump in my throat. Swallowing was difficult and annoying. Our family doctor did blood tests, but I was told that I was fine. No worries. All in my head. This continued for years with my occasional plea for more tests and normal results that indicated I was a hypochondriatic fruitcake. And then…in 2010 the weight gain began. I have always been pretty mindful of my diet and exercise and I have never really had much of a weight problem, but all of a sudden, on minimal calories, I started packing on the pounds. Now, we women have been accused of being overly conscious of our appearance, but the fact is, the men who make that accusation are pretty durned picky about how they want us to look!! And so, it is a natural dismay that surrounds a woman who watches the needle on the scales start ticking more and more to the right for no reason at all!! Mr. Fix-It has been the unusual man who has wisely kept his mouth shut about such things and I appreciate it. It was in May of 2011 that I gave up on our family physician and went to a Naturopath/Nurse Practitioner who actually felt my throat when I complained of pills getting stuck. Lo and behold, there were nodules on my thyroid and I had confirmation that I am only partially off my rocker!! Many tests, including a biopsy on the nodules, later confirmed that my thyroid was a wasteland of holes and lumps, with autoimmune disease-style antibodies present and the diagnosis (by an extremely inappropriate if not downright vulgar endocrinologist) of Hashimoto’s disease. I made the decision not to go back to this doctor because the red flags were waving all over the place. I found out later that I wasn’t the only one with that complaint. But I was put on desicated thyroid and felt good for the first time in a long time. I thought we had conquered the beast. Little did I know…. And stay tuned tomorrow for the rest of the story. |
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In Hopes This Helps Someone!!
Tuesday, June 19th, 2012
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I’ve been debating how to approach occurrences of the last few weeks for you all. Life has been a bit strange in that time frame and I feel like I should explain in the hopes of possibly helping someone else who might be in the same boat as I. That boat seems to be a bit rickety and is letting in water, but it is the boat in which I find myself, none-the-less. I have been diagnosed with an unusual form of autoimmune disease that exhibits itself as both Graves and Hashimoto’s diseases. In other words, my white cells really hate the rest of me! Most people have one or the other of these diseases, but I am one of those people who is termed, “unlucky,” as I have both. You might surmise that there is more than one reason why I don’t play poker or go to the casinos!! Over the past couple of years, I have done a LOT of internet searching for information on my various symptoms, as doctors seemed to want to diagnose me as “a little crazy.” It has been a long journey from 2005 to the present accurate diagnosis and I have a few things to say to anyone out there who is having a health struggle of their own. (1) Trust your instincts: If you think something is wrong, then act on it. Seek help and don’t stop until you have a doctor who takes you seriously, who acts responsibly and who treats you with respect. (2) Do not be satisfied with anything less than the best in care, follow-up and scheduling. You are paying for services. Therefore, YOU are the customer and the doctor and his cohorts are serving YOU. Don’t be intimidated and don’t accept abusive behavior from anyone! (3) Be willing to change doctors and hospitals until you have accurate answers and top-notch care. (4) Educate yourself. The National Library of Medicine is an excellent source for research, etc. as is The Mayo Clinic site. For my particular issues, I was delighted to get information at the University of Michigan’s site. Many of the university medical schools have sites where one may research any disease. Read books. And don’t let ANYONE discourage you from educating yourself. (5) Be willing to look at alternative forms of treatment. There are natural approaches that far outweigh traditional medicine in many cases. For example: A year ago, I was told that I would have to have regular epidurals in my back for pain and eventually a rod placed in my spine for curvature of the spine. THAT sounded fun. (sarcasm there, folks) I am now under the care of a chiropractor who has succeeded in ridding me of any back pain and who has actually been able to straighten my spine significantly, without medication or surgery. (6) Pray for discernment and direction: My son made a comment to me one day when I was very discouraged with the progression of my disease. He reminded me, “Mom. There is a healer so much greater than any of these doctors!” He is so right. Healing can come in spite of doctors. Healing can come as God uses doctors. And healing may never come. But one thing is certain, healing of the spirit is more important than anything else. With that peace is acceptance and an ability to overcome in the midst of disease. I am going to make this a three day soap opera for you! Tomorrow, I’ll add the next installment. Will Dr. Moan find spots? Will Nurse Jane be able to draw blood on the first attempt? Stay tuned, as the world turns!! |
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Laughter IS The Best Medicine
Monday, December 12th, 2011
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Well, it’s Monday and I can sure tell you that I’m glad it is today and not last Monday. A whole lot can happen in just 7 days!! As you know, the spectre of Toxic Shock Syndrome in our daughter overshadowed the bliss of having a first grandchild. All of a sudden, marveling over perfect, tiny toes and fingers of the baby turned into a fearful dread over a sunburn-like rash, high fever and excruciating joint pain in Momma. 
I don’t know about you, but Toxic Shock Syndrome is something I had only read about in boxes of feminine products. I’d never heard of anyone having it and I wasn’t really sure that it wasn’t made up by some pharmaceutical company to promote a drug and give us something else to worry about besides restless legs or dry eyes. But it is real and it is bad. It is deadly. It can be caused by staph or strep bacteria (in this case it was staph caught at the hospital) and within a matter of a couple of days, can be fatal to its victim. General flu-like symptoms with fever are the initial signs, but the tell-tale bright, bright red rash over the entire body (that looks like the victim has been blow-torched) is the warning that a hospital admission had better be in the very, very immediate future. We feel very fortunate that dear daughter’s case was caught early and that the worst thing she had to experience was lots of drawn blood and IV megadoses of antibiotics that nipped it in the budding staph rampage. The pseudo-HAZMAT suited personnel were a little disconcerting, but heh, it was staph! I have to say, though, as for me, a battle with a recliner and the ensuing laugher healed my angst and stress I was feeling, better than any medicine could do. The nurses were very generous in trying to find a comfortable way for me to stay with my daughter each night so that Daddy could take Baby home away from all germs. When they mentioned a recliner would be more comfortable than a cot, I envisioned overstuffed and soft and readily agreed. I was not prepared for the ’70’s era, straightbacked, minimalist black monster that appeared while I was in the cafeteria.  That evening, after making sure that daughter was as comfortable as one can be with tubes attached from arm to a stand of hanging bags with the inability to move freely, I fluffed pillows and a blanket into the recliner and positioned it to leave a pathway for the nurses whom I knew would be appearing every hour on the hour. I sat down, leaned slightly for the foot rest to pop up and then used every ounce of my upper body strength to force the back of the chair into a reclining position. It was then that I realized that it was the kind of recliner that makes an “ab buster” passe. The only way that this piece of furniture would stay reclined was for me to remain rigid, using stomach and thigh muscles as springs. I figured I could do it.  I turned my head on the pillow, closed my eyes and was hit with a beam of light that flashed through my closed eyelids and made it impossible to sleep. A square light was positioned on the opposite wall and I think it was illuminated with a 200 watt bulb. I sat up and removed blankets, slipped on shoes since we were told not to touch the floor or put anything onto the floor, found the light switch, turned it off, squirted sanitizer on my hands and trotted back to the chair. I sighed with pleasure as I reclined again and fell asleep with tight stomach muscles holding the recliner in place. As soon as I fell asleep, I relaxed, and as soon as I relaxed the chair shot back into position and I was rudely awaken to sitting straight up in the chair that was about two feet back from where I had started. It was on rollers and my abrupt upright snap sent it backwards a few feet. I slipped shoes back on and instead of getting out and postitioning the recliner, I placed both feet to either side of the foot rest and walked the chair, ala Fred Flinstone, into place. I reclined again and settled myself to sleep and did fall asleep, only to be awakened again in an upright position and further back toward the door. The nurse walked in and I greeted her as if the chair and I were best buds. She said nothing about my blocking the doorway or about my tennis shoes sticking out from under the sheet. She did her blood-letting and disappeared. I made an effort at getting some sleep and again woke up, sitting up and had to walk the chair back into place. It was then that I started to giggle. I didn’t want to wake my daughter but my situation was feeling pretty hillarious. I finally figured out that sleep was not an option, trundled back to the light switch for the wall light, switched it on, slapped some sanitizer on my hands and read a book until the sun peeked through the blinds at the window.  The next day, I requested a cot which was comfortable as all get out for each hour that I was allowed to sleep between nurses’ visits. As it turned out, my daughter had the most positive outlook of us all and pointed out to me on her final night there, that we were at a 5 star hotel in a room with a view. She had me open the shades and I was astounded at what I saw. It was just breathtaking. Lights glittered over the city of Oklahoma City and the Devon Tower rose above everything with glistening lights like a nighttime ride at an amusement park. The view made me so thankful to be an Oklahoman with praying friends and family. Life is good!!  So thank you again for your prayers, thoughts and notes. God has blessed my family with His healing hand and we are all very grateful. |
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