Not Over Till The Fat Lady Sings

The burst of energy I had the week of May 27th is definitely gone. I wonder if it had to do with the B12 shot. I am scheduled for another shot on June 24th. Hopefully I will gain another week of energy after that. I guess time will tell.

Today was my appointment with No Name and the Microalbuminuria clinic. I had the microalbuminuria tests and for the first time in a while I had no microalbuminuria (tiny amounts of protein in the urine) which is a good thing. After the test, I continued on to my appointment with No Name. My cholesterol is high at 6.49. It has gone up from 6.2. My total cholesterol/HDL ratio is also high at 5.11. My fasting blood sugar was 4.7 which is excellent. The triglycerides were normal at .88 and the VLDL was normal at .40. The other test results were not in so I will have to wait for those until my next appointment on June 27th.

My blood pressure is up at 159/95 which is rather worrisome. However, I have decided not to take medication. I have been keeping track of my blood pressure and it fluctuates too much. In a matter of a day it can go from 159/95 to 116/65.

I have been looking back at the copies of my old medical records; the records from the tests I had while I was being diagnosed with Graves Disease. Now that I am older and wiser, I wish someone would explain to me exactly what those tests really meant.

On February 20th, 1998 my T4 was 113 with the lab normal being 58-140.  My T3RIA was 3.2 with the lab normal being 1.3-2.8.  My TSH was <.1 with the lab normal being 0.5-4.

The thyroid antibody test I had that day came back with all results as negative.  Thyroglobulin antibodies were negative, microsomal antibodies were negative, ANA was negative and the Latex was negative.

On the same day my ESR was 51 with the lab normal for a female being 0-20.

The lab noted on the test result that my platelets appear normal, RPX slight aniso with few macrocytes and no latex present.

On March 3, 1998 I had a 4 hour thyroid uptake and scan.  The report says and I quote, “49 year old female.  Palpitation with tremor, anxiety and headache, TSH and T4 increased and the thyroid is normal in size.  The report goes on to say, “The 4 hour uptake of iodine 131 is mildly elevated at 21% (normal range 4-15%).  The gland has been imaged with pertechnetate.  This demonstrates avid tracer accumulation within both lobes.  No hot or cold nodules are identified.  The impression states that the findings are consistent with Graves’s disease.

On April 3, 1998 I had my I-131 treatment (radio active iodine).  The report sites my clinical history as follows and I quote, “49 year old female with Graves’s hyperthyroidism.”  The clinical history continues with, “Thyroid 30 grams and four hour uptake at 21%.  The report states that the provisional diagnosis is Graves’s disease.  Wonder why it is called a provisional diagnosis?  Were they not sure?  The Radio pharmaceutical report states that I was given I-131, 510 MBq  p.o. (per mouth) on April 3, 1998 at 13:35 hours.  The report also confirms a second time that an oral treatment dose of 510 MBq of I-131 was administered.

When I was getting ready to leave the hospital that day after my treatment, the nurse assured me that I would feel better in no time flat.  In this case, ignorance was NOT bliss.

If there is one message that I can get across with these diaries, that message is “do not submit to RAI until you have looked at all your options.”   RAI may very well curse you to a life with horrendous non-treatable symptoms.  Trust me I am a prime example of such an error.

If this weather keeps up we will have to build an ark. It started raining on June 1 and has not stopped. We have not had any flooding but many of the communities around us have experienced horrendous flooding. The amount of rain caused creeks, rivers and drainage ditches to overflow their banks. The water running off of the fields was an incredible sight. It literally came off the fields and flooded the roads. What a nightmare!

The energy I felt last week is gone and I find this quite upsetting. I had planned on doing so many things this week but I will have to start pacing myself again. One week of energy out of 52 is better than nothing. I am beginning to suspect that the Zyban does not agree with me. However I have decided to take it for another week before I give up on it.

I had another appointment with No Name on Friday, June 6th to see about my May 24th lab results. My Free T4 was 16.9 with the lab normal being 11-24. My TSH was 0.02 with the lab normal being 0.6-6.0. The result for the Free T3 was not in. My thyroglobulin antibodies came back as negative but my microsomal antibodies came back high. No Name told me he would find out what high microsomal antibodies might mean.

I decided to continue on my quest for answers and asked No Name to requisition more tests for me. The tests I asked for were for Cholesterol, DHEA, Estradiol, Fasting Blood Sugar, FSH, FSH/LH, LH, Progesterone and Testosterone. The results should be interesting to say the least. Heaven only knows what I will do with the results when I get them. Oh well, I will cross that bridge when I get to it.

My favourite song these past two weeks has been “Dancing with Myself” by Billy Idol. Feeling like crap and not knowing why makes me feel like I am dancing all by myself.

Again I apologize for my grammer and want to assure you that I am truly trying not to start every sentence with I.

This past week we were blessed with lovely weather. Not quite warm enough to swim but certainly nice enough to spend most of the day in my flower beds. It has been a week since I had the B12 shot and started taking Zyban. I am not sure which of these two medications has given me extra energy but something sure has.

I woke up Monday morning with the usual horrible pains, nausea and dizziness. In spite of the pain I still had the energy to get busy and start weeding my flower beds. Last fall I did absolutely nothing to prepare the beds for spring. As a result the beds were home to every imaginable weed.  Last Saturday I had sprayed the flower beds with Round Up and would highly recommend this method of weed disposal.

By today I had weeded the big flower bed at the back of my yard and the flower beds at the back and front my house.  I also planted 52 bedding plants. Quite frankly I cannot believe it myself!

I have an appointment at a Microalbuminuria Clinic on June 13th. I will see No Name on the same day to get the results of the tests I had done on May 24th.

Hopefully this burst of energy lasts for a while. It feels just amazing to be able to get outside and actually do some gardening. Mind you, the evenings have been pretty rough this week. The flank pain and Achilles tendon pain have been hard to tolerate. My slogan this week is “Mind over Matter.”

We are suppose to be having spring but at times it has felt more like fall.  Last Thursday night the temperature went down to -4C.  Early Friday morning we had snow flurries. The weather certainly is not conducive to putting out bedding plants or swimming in the pool. It looks like there may be better weather in store for us this coming week. Hopefully I haven’t blinked at the wrong time and missed summer.

After taking a short break from doctors, I have decided to take matters into my own hands. It has become obvious that the “great” Squirt and his minions have no intentions of helping me find a diagnosis.

On Friday, May 24th I went to see No Name at the clinic here in town. He briefly went over my medical history. I asked No Name for a Vitamin B12 shot. He had no problems giving me a prescription for one shot a month for ten months. I asked him for prescription for Zyban. I had two reasons for wanting Zyban. The first reason of course is to help me quit smoking. The second reason is that the active ingredient in Zyban is bupropion, a relatively weak inhibitor of the neuronal uptake of dopamine, serotonin and norepinephrine. I am hoping that it is enough of an inhibitor of norepinephrine that it will stop the horrible jolts of adrenaline that I experience during the day and at night.

No Name insisted on giving me a prescription for sleeping pills. I have up to this point refused to use sleeping pills. The sleeping pills he prescribed are called L-trypytophan or Tryptan. As soon as I got home from my appointment I checked these pills out on the internet. Imagine my surprise and horror when I read about its association with the nationwide outbreak of Eosinophilia- Myalgia Syndrome (EMS). It came as quite a shock that such a widely used medication could be associated with a debilitating and potentially lethal syndrome that resulted in dozens of deaths, and may have injured more than 5000 people. Makes me wonder if there is a plot out there to get rid of Widebertha.

I asked No Name for a TSH, free T4, free T3 test as well as a thyroid antibodies test. He agreed and gave me the appropriate requisition.

While waiting at the hospital for my blood test paper work, I went to the hospital pharmacy to get my Vitamin B12 prescription filled. After having the blood tests done, with a butterfly I might add, I hurried back to the clinic for my B12 shot.

I had hoped that I would wake up on Saturday morning with boundless amounts of energy but that was not the case. I felt just as crappy as before. Very disappointing. I was later told that it can take a while for Vitamin B12 to kick in and for a person to notice a difference in energy levels.

Tomorrow is my mom’s 81st birthday. I am so very fortunate that she is still healthy. Actually, to tell you the truth, in any given day my mom can run circles around me.

Today was the day I had the appointment with Squirt. It turned out to be the appointment from hell.  My husband and I drove into the city arriving at Squirt’s office at 11:15 AM. Since this appointment was Squirt’s idea and not mine, I let down my defenses, became rather delusional and actually thought that today might be the day that my symptoms would be taken seriously.  After all Squirt had called me and told me that he felt it was now time to do the tests I had been asking for. I should have remembered that the doctors I see do not have my best interest at heart. They take me for a silly fool and act like my medical complaints are figments of my imagination. Even with my vivid imagination, I could never dream up the symptoms I am experiencing.

Words cannot express how tired I am of being insulted and dismissed by these so-called healers. The doctors I see have obviously never seen or heard the words “above all else do no harm.” The medically challenged frauds I have seen in the last four years have harmed my body and my soul.  They have called into question my honesty, my integrity, my intelligence and my self worth.  These doctors seem to be doing everything in their power to destroy me as a person of any worth or merit.  What can I do to protect myself?  What resources can I call upon to help me combat this obvious collusion on the part of my doctors?  My body and soul are beyond fatigue. The strength I need to combat this senseless, continuous disregard for my medical problems is fading fast. I now know for certain that in their eyes I am not a worthwhile human being but a disposable 54 year old woman.

Squirt began the appointment by telling me that he felt my symptoms were all related to a sleep problem. I told him that Bighead, the doctor from the sleep clinic, had written in his report that I had such minimal sleep apnea that he was convinced that a CPAP machine would be of no use to me and would make no difference to my medical problems.  I also told Squirt that Bighead had written a very detailed report to him.  After all Squirt was the one who referred me to the Sleep Clinic and insisted that when they found my sleep apnea all my problems would be solved. I went on to tell Squirt that Bighead had recommended quite a number of tests that he, Squirt, was suppose to order ASAP after my return from the Sleep Clinic. I gently reminded Squirt that I had returned on February 6th and that he had received that very detailed report from Bighead that very day. After all I had received the same report. Squirt hemmed and hawed as only Squirt can do and proceeded to tell me that he could recall no such tests.  At this point he was sitting at his desk with my file open and I was sitting a chair beside the desk. Upon hearing his ridiculous remark about not finding any suggestions for the tests I mentioned, I got up from my chair, elbowed him out of the way, found the page of the letter which listed the tests and read it to him. I must note here that I am very proud of my ability to constrain myself since throughout these four years of hell I have never done this man any bodily harm.  After this little exercise Squirt admitted that he had not read that part of the report.  He then stated that he would have to evaluate the tests that Bighead had requested for me and then decide if they were pertinent.

It was at this point that Squirt got on his high horse and informed me in no uncertain terms that I had been to many many doctors and had had many many tests. This was done with his arms flailing in mid air to add drama to his ludicrous statement. By this time I was getting that all to well known sinking feeling in my stomach. I also realized that the only redeeming thing about this appointment would be the fodder it would give me for my website. Squirt then elaborated and emphatically stated that I had seen so many doctors in so many places and had had so many tests done that he saw no reason for more testing or more doctors. Be proud of me – I remained a pacifist. He yammered on about this for a few minutes longer but I will not go into detail. The conversation at this point was so moronic that I would be embarrassed to repeat everything he said. I will repeat the following statement he made which just shows you how shallow his thought patterns really are. He told me that just because I did not feel well did not mean that I was sick or had an illness!  Now isn’t that profound?

When he finally shut that big gap in his face and I collected my thoughts, I told him that he need never call me again for an appointment. I told him that with an attitude like his, it was a colossal waste of time for me to drive into the city and spend even one minute in his presence.

I then went on to tell him that all the doctors I had seen, except for two, had been referred by him. The only two that had not been referred by him were the doctor in the town I live in who I see in emergency situations at the clinic and the endocrinologist in the city in the west. I told him that I was an intelligent woman who had a brain and that I did a lot of research and reading about my symptoms. I told him that his friends, those medical wonder boys he sent me to, had all asked me what I thought was wrong with me.  I, in my stupidity, had always answered them.  My answer to that question had been that I had many of the symptoms associated with endocrine problems.  I told Squirt that his buddies immediately took offense at the fact that I had researched my symptoms and did everything in their power to prove me wrong.  I told him that the only testing any of them had done was 24 hour urines for Cortisol and one water deprivation test which the endocrinologist did not bother to complete. I told Squirt that these idiots, yes I called his buddies idiots, had never once even contemplated looking at my symptoms objectively and once they disproved Cushing’s and Diabetes Insipidus they left me dangling in the wind. None of them made any attempts to try and figure out what the problem might really be. I told Squirt that they were so insecure about their own intelligence that they did everything in their power to destroy the credibility of a woman with intelligence. Squirt then sheepishly admitted that doctors had a problem with patients who “knew their stuff.”  My answer to him was, “How did such petty people ever get admitted to medical school?” I also told Squirt that with an attitude like that the harm these doctors inflict upon innocent patients is unforgivable.  I told Squirt that I had decided that the next time a doctor would ask me what I thought was wrong with me; I would do a silly giggle and say “Oh dearie, I am 54 and I don’t think anymore!” Squirt then apologized on behalf of the doctors he had sent me too.  Quite frankly it was too little too late.  Course it would never occur to him to apologize for his own behaviour. The thought that went through my head was “what a wooze.”

Squirt shifted around his chair for a few seconds and then said that he would order a few of the tests the Sleep Clinic doctor had recommended. My answer to that was, “How very efficient of you since it is now May 2 and you have had that report in your hands since February 6th.” I asked Squirt if I could have the Alpha Subunit test including LH, FSH, estrogen, progesterone, testosterone and a thyroid panel. Squirt’s answer to that was that he did not know what an Alpha subunit test was and therefore could not order it. He also said, “So I guess you think I am a fool as well!”   At this point I was so utterly and completely physically and emotionally exhausted that I did not bother to respond to his question or to his request that  I explain the alpha subunit test to him.  I gave up.

I realized then that there was no use in asking for the tests he had promised to do. I also realized that doing those tests had never been part of his agenda. It became crystal clear that my agenda and his agenda would never ever be even close to being compatible. Squirt then decided at the last minute that he would give me a requisition for a few of the blood tests that Bighead had recommended. The tests included a BUN, Creatinine, Calcium, Magnesium, Hemoglobin, Ferritin, TSH, Folate, WBC, Potassium, Sodium, ESR , ANA, RA and Bone Density Screening. Bighead had recommended that I be investigated for hyperaldosteronism but Squirt reiterated that it would be a total waste of time and money. He made sure I understood that as far as he was concerned the potassium crisis I had in January was due to the potassium sparing diuretic I had been on for over a year. Go figure!

When the Dingaling wrongly diagnosed me with right side heart failure in January, Squirt wanted me to see a cardiologist. I insisted on seeing a cardiologist of my choice which was one of the better decisions I have made regarding my health care. The cardiologist I saw was professional, friendly, caring and was very knowledgeable. He wrote a report to Squirt which included a recommendation that I see an endocrinologist at the city hospital. The cardiologist happened to chose Supercilious who I saw a year ago this coming June. I told Squirt that the only reason I was consenting to see this endocrinologist again was because the cardiologist had recommended it. I made very sure that Squirt understood that I expected him to convey the right reasons for this visit to the endocrinologist. We will soon see if Squirt is capable of conveying the right information.

Next time Squirt calls me and tells me he wants to see me, I will tell him to go find someone else to harass and abuse. I have had more than enough.  On the way home from the appointment my husband and I decided that maybe it is time for me to see a naturopath.  I will have to think long and hard about my next move. I desperately need medical attention but the big question is where will I go next?

Please forgive the over use of I at the beginning of too many sentences.  Quite frankly I am too tired to change the grammer mistakes.

Great expectations I do not have!  Today was my appointment with No Name. The appointment which I had hoped would bring some results was a dud.

No Name informed me that he had been too busy to look over the medical records I had brought him on April 11th. These were the records that he asked me to bring him so that he could figure out exactly what tests I still needed.  He told me that he planned to go over my records but would not have time in the next little while. No Name checked my eye and gave me some antibiotic eye drops. I told him that my stomach was driving me crazy so he gave me a prescription for something called Nexium.  When I left I told No Name that he could give me a call if and when he read my records. He assured me he would.  Of course, I won’t hold my breath while I wait!

I am getting so used to the nonchalant attitude of doctors that I don’t get my knickers in a twist anymore if an appointment turns out to be a waste of time. However it does make me wonder if doctors get some sadistic thrill out of watching a 54 year old woman suffer month after month and year after year.  I am beginning to think this is a game with them.  Hopefully it is just a game and not some evil plot to see how long it will take to drive a 54 year old woman right around the bend and have her begging for sedation.  I have to admit that I have become very cynical about these so called healers.

There is always Thursday, May 2nd, the day I see Squirt. I wonder if he will still be as agreeable as he was on the phone when he told me that he felt it was now time to do the tests that I had been requesting.  I will know soon enough.

I am an incredibly proud Nana today. My grandson’s Ukrainian Dance Recital was held yesterday afternoon, April 28th, and it was a great performance. He performed the “Coffee Grinder” on stage for the first time and pulled it off perfectly! This Nana got so excited she nearly jumped out of her seat! All the dancers from his dance club performed superbly. The guest performers’ dances were brilliant! Oh to be able to dance like that!

The last few weeks have been rather hectic getting ready for the recital but it was well worth the effort. Amazing what this old body can do. I got both the recital tickets and the invitations designed and printed on time. My next project was to write the letters requesting donations and was very pleasantly surprised at the generous response. I finally finished printing the programs that I had designed about midnight on Saturday. Saturday late afternoon I spent an hour with the other volunteers decorating the theatre for Sunday. We all met again at the theatre on Sunday morning at 11:00 am to set up for the reception after the recital. It is so nice when everything comes together so perfectly.

The most stressful part of my day on Sunday was the very short presentation I made honouring a dear friend of mine who has served as chairperson of the Parents Board of the dance club for the last four years. By the time I made the presentation I knew that I was exhausted beyond belief but I managed to pull off the presentation without any hitches. However, when my friend and I were walking back stage after the presentation everything suddenly went black, my legs gave out and I fell like a ton of bricks.. All I could think was thank goodness this happened now and not while I was on stage. I wish I knew what causes this extreme, total body fatigue and muscle weakness in my legs which in turn causes me to collapse. This has happened to me before and I hate it. This incident just makes me more determined than ever to find out what the heck is going on with this old body of mine.

Today I am still in that realm of utter exhaustion but that is nothing new. I am tired no matter what I do. Along with the fatigue I am experiencing excruciating pain in my hips, legs and feet and no I did not dance yesterday. It seems when I am over tired the pain becomes much more intense. I woke up this morning with some kind of infection in my right eye. Very weird. I have never had this before. There is quite a bit of swelling below the eye. With Graves Disease the bags under my eyes are bad enough without any additional swelling. Oh well, I am sure this too will pass.

Well, well, well, wonders never cease. I had a phone call this morning from Squirt’s office. His secretary informed me that my Echocardiogram had finally been booked. I nearly burst out laughing when she told me that it was booked for December 2, 2002. My reply to that bit of news was, “Good thing I don’t really have right side heart failure or I might just be “tits up in the ditch” long before I ever get to that Echocardiogram.”  Oh the wonder of our medical system.

Squirt’s secretary then went on to tell me that His Royal Highness wants to see me on May 2.  I asked her why in the world he wanted to see me. Her reply was that he wanted to discuss further testing and treatment.  Right, when pigs fly!  I decided to accept the appointment against my better judgment. I figure if No Name and Squirt do even just a few of the tests I want, maybe something will show up.  Between the two of them I should hopefully get some answers.  But of course, I shall not hold my breath.

I also got my follow up appointment with No Name confirmed today and it is for April 30th. I brought him copies of my medical records on April 11th. Hopefully he will have read them by April 30th and given some thought to the tests I have repeatedly requested. Again, only time will tell.

This fatigue is really wearing me down. It is hard to get motivated when one is constantly battling fatigue and pain. The pain is in my hip bones, Achilles tendons and ankles. I dread each and every morning because of the nausea, fatigue, dizziness and pain. As a result I have become very careful about any commitments I make.The one commitment I have made this month is to participate in the planning and organization of my grandson’s Ukrainian Dance recital. This is something I have been involved with for four years and do not want to give up. I have been taking him to Ukrainian dance practice every Monday evening for the last 4 years. These Monday evenings are special evenings for the two of us and I refuse to let my illness spoil that.

My grandson had an accident at school today and since his parents were not home, I was called to come to the school. He had been standing on a teeter totter trying to dislodge it from the ice, when it suddenly gave way and hit him in his chest. The teacher was worried that he had broken some ribs so I took him over to the clinic. No Name happened to be available when we got there so he took a look at him.  Grandson was fine, just badly bruised.

When I got up to leave, No Name asked me if I had a few minutes. He told me that he felt I was sick and had a problem and he would like to investigate further. No Name told me he felt that I had an endocrine problem even though the doctor in the west had ruled out Cushing’s. He then went on to tell me that maybe it was time to do the tests that I had been asking for.

No Name asked me to bring him copies of my records from the sleep clinic and the copies of my medical records I had received from his old clinic. I agreed to do this with some hesitation. It still ticks me off that I had to pay $40.00 to get my medical records from No Name’s old clinic. It wasn’t my idea for him to move to the new clinic.

However I was pleasantly surprised that he suggested further testing. Maybe there is hope. We will see if he will follow through.

I forgot to mention the other day that my grandson celebrated his 8th birthday on April 5th. His parents rented a church gym and 8 boys arrived right after school to play floor hockey. Papa’s job was to pick up the 8 boys and grandson at their school and bring them over to the church gym. Dad’s job was to bring the equipment and food. Mom’s job was to get the lunch ready and make sure his gifts were wrapped. We were fortunate that the rental of the gym included the use of the kitchen facilities. Nana’s job was to take a video of the event. The boys had a great time. Seven and eight year olds sure have a lot of energy. I envy them! I bought the neatest party treats for the boys attending the party – an assortment of bugs, frogs, snakes and spiders. The kids loved them.

On April 6th I had the family over at my house for grandson’s family birthday party. The family included great grandma, great grandpa and my sisters and their families. The adults had a scrabble tournament. My grandson and the friend he brought with him, played with one of his birthday gifts, the Nintendo Game Cube. There are only two children in the family – my grandson and my sister’s grandson who is 9 months old. Makes it easier if Grandson brings a friend with him.

I guess what really bothers me is the extreme fatigue I feel for days after events like this. These two events were not hard work or stressful but it doesn’t seem to matter. My body literally crashes after and I wish someone could tell me why this happens. I am not 90 years old for crying out loud! I should have enough reserve energy to participate in two birthday parties.

Nothing new has happened in my search for answers. I have been researching medical information on the internet. During my searches I found my glow worm.

My neck is getting rather bothersome. The lovely hump that I have developed actually feels like it is burning at times. This happens when I have been on the internet for a while or have been reading for too long.

Hopefully spring is just around the corner. I can hardly wait to swim again. Mind you I never dreamt that spring 2002 would arrive and I would not have a diagnosis. At times I feel like giving up. Might just be easier to accept the prescription for anti-depressants and sleeping pills and slowly glide into a zombie state.  At least then I wouldn’t worry about a diagnosis.