December 5, 2001

It has been a lazy day for me. We are expecting a total of 8 inches of snow by tomorrow.  It is good to take a day to just hang out, listen to music and reflect on things. Right now my favourite song is “No Limit” by Jock Jams 2. I need the beat to get me moving (use your imagination – just imagine a whale with body pain trying to move gracefully to music).

I had a phone call from the internist’s office on Monday. I was told my appointment has been scheduled for January 14. Oh Whoopee! When the secretary told me where the appointment would be I nearly had a fit!  Just my luck!  This internist I am suppose to see shares an office and consultation rooms with Supercilious!  I truly believe the gods are conspiring against me. Like there is a hope in hell that I will get an unbiased opinion! Supercilious and the internist share office and consultation space in a big teaching hospital in the city. Of course the hospital has a central record system. This means that the first information this internist will see about me is the wrong information Supercilious put in my files. I must have a sign tattooed on my forehead that says “Persecute Me Please!”

Actually this is becoming quite a comedy. Someday I will have to write a book called “The Persecution of Widebertha.”

“Vengeance is mine,” sayeth the Lord – but sometimes just sometimes I let my imagination run wild.

Seems like the terrible boil I have under my arm is finally starting to heal. Instead of being as big as a large egg it is now as big a small egg. The whole area around the boil is still very red and quite purplish towards the centre. However, it must be healing because all the skin around it is peeling.

Of course I realize that this is quite a frank and gross description. You would think, however, that one of those “smart guys” would be able to come up with one reason why I get these disgusting, painful boils.

When I ask my esteemed physicians why I get these boils I get a shrug of the shoulder, a shake of the head and the proverbial “I just don’t have any idea.” Such geniuses.

I will have to rethink the fact that I continue to try to entrust my medical care to shoulder shruggers!

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November 28, 2001

Squirt telephoned me this morning at 9:00 AM and woke me up. After sleep disruptions all night long I had only fallen asleep at 7:30 AM.

Squirt informed me that he had made arrangements for me to see the internist. He told me that he had only told the internist about the diagnosis made by the Blonde Bimbo. I will know whether this is true or not by the way the internist reacts when I go to see him. Squirt went on to say that he had told the internist that I thought I was sick!  I really don’t understand this man and his motives. Why would he not tell the internist that HE thought I was sick – no, he tells him that I think I am sick! I can only presume that the internist will now have certain  ideas about me before I ever get to see him.

Squirt told me that the internist wanted me to have a thyroid panel done before my appointment and that he would also order a PTH test. Then he dropped the bombshell. Squirt told me that he did not feel it was necessary that I have the other three tests done that I had requested. (Calcium, IGF-1 and DHEA) He told me that he wanted an opinion from the internist before he would order these particular tests.

So the waiting game continues. I have no idea why Squirt or the other doctors I have seen find it so difficult to order tests that I suggest. It seems to me that they presume that patients are ignorant and therefore can not possibly have any idea what tests and treatment would be right for them. How long does a person have to suffer before doctors will actually listen?

 

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November 23, 2001

My mom and I made the trip into the city this afternoon to see Squirt. Over two years ago, before I realized the extent of Squirt’s limitations, I had encouraged my mother to make an appointment with him to discuss her thyroid medication. Those were the days when I in my naivety still believed Squirt when he told me that he always listened to the patient and would never give up in trying to find a diagnosis.  Today my mom and I both needed prescriptions refilled and my mom needed her yearly thyroid test.

My last appointment with Squirt had been August. I felt only apprehension and anger when the thought of seeing him again crossed my mind. During the drive into the city my mother and I discussed his involvement in my non-care. We decided that I would ask for four tests and we would base further actions on his willingness to requisition these tests.

I was called into the consultation room first. Squirt walked in the door and said, “So are you feeling better now?” I looked at him in disbelief! Here I was, face swollen, hands swollen, dark circles under my eyes from lack of sleep, bruises up and down my arms that refuse to go away, barely able to walk because of the pain in my Achilles Tendons and the man had the audacity to ask me if I was feeling better.  I guess the fool still believes that I have nothing more than a small ache or pain. Actually I believe that he thinks that I AM the pain!  I told him that I was feeling progressively worse.

We discussed my September appointment with my neurologist. Squirt had insisted that I see him. You see I have been plagued with pre-menstrual migraines since the age of 11. In the beginning these migraines would last 2-3 days but gradually by the time I reached my 30’s they would last 4-5 days. In 1988 the headaches became unbearable.  The pain would be so intense that medications no longer worked.  I still only got them before my period but now they would last for 7-8 days. Between 1988 and 1998 there were many times when I thought I would not survive these attacks. By 1992 I would pass out for hours at a time and have absolutely no memory of those lost hours. I was prescribed every migraine medication on the market but the only medication that brought the slightest relief was pain medication and Gravel shots administered by my husband. This neurologist had been a Godsend. He had consulted with me, encouraged me and recommended pain medication.   After RAI in 1998 the headaches changed dramatically. I still got the per-menstrual migraines but now only needed half the medication to actually wipe out ALL the pain.  I could now function as a human being during these episodes. This past summer Squirt decided to focus on my residual migraines instead of my debilitating symptoms. He got quite upset and animated when discussing the fact that my migraines lingered.  He felt that since I was 53, my migraines should have miraculously vanished.

My neurologist saw me in September and told me he was not worried that my migraines had not disappeared. He told me that it took several years after menopause for these migraines to  stop. The neurologist also told me that I was very fortunate that the migraines had not gotten worse during menopause. Apparently there is as good a chance of that happening as there is the chance that they will improve. Squirt had received the summary letter from my neurologist and now had no problem with my lingering monthly migraine!  Thank goodness that the migraine issue has finally been put to rest!!  I had told Squirt this summer that I had far more pressing medical issues than the migraines.  In fact, I told him that at this point the migraines were the least of my concern.

I then “took the bull by the horns” and told Squirt that I wanted to have four tests done namely PTH, calcium, IGF-1 and DHEA.  Squirt of course told me that he could not possibly order tests if he did not know what the tests were and why they needed to be ordered. I very carefully and precisely explained to him why I thought I needed these tests. I told him that I now knew that thyroid disease was rampant among members of my birth mother’s family. My birth mother’s cousin had medullar thyroid cancer, a familial form of cancer. I wanted the PTH and Calcium tests based on that information. Because of my symptoms, I told him that I felt an IGF-1 test might be in order. Of course I explained that IGF meant Insulin Growth Factor. I went on to explain that I did not have diabetes but that maybe I had a problem with my insulin receptors.

Squirt sat for a minute and then told me that he would have to think about my request for these tests.  He went on to say that he would let me know in a few days since he was taking the whole month of December off. (He just took the whole month of September off). I told Squirt that he should not take too long to think about this because I was running out of time. He looked at me with one of those condescending looks I am sure they must practice at med school and asked me why I thought that.  I told him that my body was giving out and I did not have much time left.

I mentioned to Squirt that both my Achilles Tendons and the lumps on these tendons were so painful now that at times my legs gave way and I actually crumbled into a heap on the floor. I told him that these episodes happened very quickly and without warning. Now when I think back to Thursday afternoon, I am quite sure Squirt never heard a word I said about my Achilles Tendons. He did not acknowledge that he had heard me. I am quite sure what I said went in one ear and out the other – much like a wind tunnel!!

I must have been an idiot but I tried again to tell him about another symptom that was getting worse. I told him that I had severe pain, severe enough to often make me catch my breath when I moved, on both sides of my back and just above my hips. I told Squirt that I was worried that it might be my kidneys. I also explained to him that on my last 24 hour urine test ordered by the endocrinologist, my Urine Protein levels had been higher than normal, my BUN had been higher than normal, my urine volume had been higher than normal, my creatinine clearance had been higher than normal, my potassium levels had been lower than normal and my sodium levels had been higher than normal.  These results coupled with the pain had made me quite concerned. I got the standard shrug of the shoulder and was told by Squirt that the kidneys were located much higher up and underneath my rib cage and therefore the pain I had was not kidney pain. That was the end of that discussion.

I have had kidney infections that have left me delirious, hemorrhaging and hospitalized. I tell you this to help you understand that I am not a novice when it comes to kidney problems and kidney pain! Trust me, one does not soon forget where in the body that pain manifested itself!  Trust me again when I tell you that when I would get these vicious kidney infections the pain was always exactly where the pain is now.

After this debacle I decided to go for broke and see if he would maybe listen to my last complaint. I told him that on my last series of tests ordered by the endocrinologist, my ESR and my C-reactive protein both came back higher than normal. My ESR was 19.6. The lab normal for ESR is <8. My C-reactive protein came back at 26. The lab normal for C-reactive protein for females is 0-20. I explained to Squirt that a high ESR was neither here nor there but a high ESR combined with a high C-reactive protein might suggest that further investigations be done. He blew me off. He told me that he himself had no such test results and that he would have to see these results before he could make any comment. I guess the man actually thinks that I have an incredibly fertile imagination and that I spend my free time dreaming up test results.

Squirt informed me that he would like to send me to see an internist for another opinion. I told Squirt that I would be willingly to see an internist but only if he did NOT write a letter to the internist describing my previous visits to Leprechaun and Supercilious. I told Squirt that it had been very obvious that Leprechaun and Supercilious had been told that I had been seen first by the Blonde Bimbo.   It had become very clear to me during my appointments with Leprechaun and Supercilious that they would never deviate from the diagnosis the Blonde Bimbo gave me. I told Squirt that he himself had told me prior to my appointment with Leprechaun that doctors did not always look favorably on patients who came to them for second opinions! I made it very clear to Squirt that if I could see the internist with a so-called clean slate, I would be more than happy to go. If he sent a letter detailing the diagnosis of Blonde Bimbo, Leprechaun and Supercilious, the visit to the internist would be a complete waste of time. Squirt of course tried to assure me that he never wrote letters that would influence the opinion of the doctors asked to do the second opinion. My answer was, “Of course, why didn’t I think if that? Leprechaun and Supercilious are telepathic and that is why they knew exactly what Blonde Bimbo’s diagnosis had been!”

Thank goodness I do not depend on the likes of Squirt to keep my self-confidence intact. If I listened to him I would have decided months ago that I must be the dumbest thing walking the face of the earth!

My mother’s appointment was right after mine. On the way home she told me that Squirt had ordered a thyroid panel for her and given her a prescription for Synthroid. Squirt had then told my mom she needed a complete physical exam. My wonderful mother told Squirt, “I am 80 years old and I will decide when and where I have a physical examination. I do not see why I should subject myself to a physical exam when I no longer trust the medical profession.” I can only imagine the lip quivering and series of pouts that must have crossed Squirt’s face when he heard this. He of course asked my mom why she did not trust the medical profession. She told him, “Just take a look at my daughter. Why would I trust a profession that does absolutely nothing to help her? Squirt protested and said that he had not given up on her daughter. My mother said, “You could have fooled me. If you really have not given up on my daughter then you would sit down and actually listen to what she has to tell you. I believe my daughter knows what her medical problem is but you people will not listen to her.”

I am so fortunate to have my mom. She is an incredible woman.

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November 18, 2001

Here I am suffering through another sleepless night. Being jolted awake every hour and half is enough to drive a person to drink! I wish someone from that special group of people called doctors would tell me why this is happening to me. Why when I am sleeping does my body produce this surge of adrenaline? When I get jolted awake my legs are crawling so badly that I cannot keep them still. My only solution is to get up and pace.

Pacing is becoming more difficult. The pain in my Achilles Tendons has been excruciating. Last night I got jolted awake. I did what I always do;  crawled out of bed and started pacing around the house. To my horror, as I was making my way from the living room to the dining room my legs actually gave out on me. It was the strangest feeling. I had this horrendous pain in my Achilles Tendons and it felt like the bones in my legs just buckled and before I knew it I was on the floor! The only way I could get myself back into the living room and onto the couch was by crawling.  Since the three wise men (endocrinologists) I have seen told me that my symptoms are menopausal I guess it is common for menopausal women to crawl around their houses on all fours!

I wear my boots unlaced now – very classy I know! I never dreamt I would be seen in public with my boots unlaced. However, if I lace them up they touch the lumps on my Achilles Tendons and the pain is intolerable.

I have made an appointment to see Squirt on November 22. I need some prescriptions refilled. I am debating what I will tell him. I could tell him about my worsening symptoms but then I hate being made a fool of. It will be interesting to see if he actually notices my very puffy hands and face.

Spend a wonderful afternoon with my grandson today. We ordered in his favourite pizza – pepperoni with extra cheese. I let him use my video camera and he took a wonderful movie of the cat – his narration is priceless. Seven year olds have such a wonderful sense of humor.

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November 12, 2001 – Great Women

Great Women – Quotations from Women about Women

Inside every older person is a younger person
wondering what happened.
-Cora Henry Armstrong

The hardest years in life are those between
ten and seventy.
-Helen Hayes (at 73)

I refuse to think of them as chin hairs.
I think of them as stray eyebrows.
-Janette Barber

Whoever thought up the word “Mammogram”?
Every time I hear it, I think I’m supposed
to put my breast in an envelope and send it.
-Jan King

A few weeks after my surgery, I went out
to play catch with my golden retriever.
When I bent over to pick up the ball,
my prosthesis fell out.
The dog snatched it, and
I found myself chasing him down
the road yelling, “Hey, come back
here with my breast!”
-Linda Ellerbee

Things are going to get a lot worse
before they get worse.
-Lily Tomlin-

You know the hardest thing about
having cerebral palsy and being a woman?
It’s plucking your eyebrows.
That’s how I originally got pierced ears.
-Geri Jewell

A male gynecologist is like an
auto mechanic who never owned a car.
-Carrie Snow

Laugh and the world laughs with you.
Cry and you cry with your girlfriends.
-Laurie Kuslansky

My second favorite household chore is
ironing. My first being hitting
my head on the top bunk bed
until I faint.
-Erma Bombeck

Old age ain’t no place for sissies.
-Bette Davis

The phrase “working mother” is redundant.
-Jane Sellman

Every time I close the door on reality
it comes in through the windows.
-Jennifer Unlimited

Thirty-five is when you finally get
your head together and your
body starts falling apart.
-Caryn Leschen

I try to take one day at a time,
but sometimes several days attack
me at once.
-Jennifer Unlimited

If you can’t be a good example,
then you’ll just have to be a
horrible warning.
-Catherine Aird

When I was young, I was put in
a school for retarded kids for two
years before they realized
I actually had a hearing loss.
And they called ME slow!
-Kathy Buckley

I’m not offended by all the
dumb blonde jokes because
I know I’m not dumb . .
and I’m also not blonde.
-Dolly Parton

You see a lot of smart guys
with dumb women, but you hardly ever
see a smart woman with a dumb guy.
-Erica Jong

I’m not going to vacuum ’til
Sears makes one you can ride on.
-Roseanne Barr

When women are depressed they either eat
or go shopping.
Men invade another country.
-Elayne Boosler

In politics, if you want anything said,
ask a man-if you want
anything done, ask a woman.
-Margaret Thatcher

I have yet to hear a man ask
for advice on how to combine
marriage and a career.
-Gloria Steinem

If men can run the world,
why can’t they stop wearing neckties?
How intelligent is it to start
the day by tying a noose
around your neck?
-Linda Ellerbee

I am a marvelous housekeeper.
Every time I leave a man I keep his
house.
-Zsa Zsa Gabor

Nobody can make you feel
inferior without your permission.
– Eleanor Roosevelt

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October 28, 2001

The weather finally warmed up a little bit today. The blizzard last week caught us unprepared. Today we managed to pull the ladder out of the ice in the pool, put the winter cover on the pool and bring in all the pumps. After using a shovel to get the snow off the pool heater we got that covered as well.

We have very cold winters but usually the first heavy snowfall waits until the middle of November and sometimes even until the end of November. This year it came much too early.

For the last couple of weeks I have been trying to keep my mind off of my medical problems. After all the disappointments this past spring, summer and fall I needed to take a break. Quite frankly I could not stomach seeing another MD. When the time is right and I have a burst of energy I will probably make another appointment with one of my so called healers. I do need to start agitating the smarties so that I can get my provincial health insurance to pay for my medical care in the US. Trust me it will be a battle royal! The doctors I need to see to get the ball rolling will not give in gracefully. They will use the lip quiver, the “are you seeing another doctor” routine, the “you don’t know what you are talking about” routine and pure condescension to block my efforts. Oh well, at least I know what I am up against. I think that being aware of the obstacles is half the battle.

Saturday afternoon I dragged this body of mine over to the arena to watch my grandson’s hockey game.  Those 7 year olds sure can skate!  I am so thankful that I can still attend his games!  I wouldn’t want to miss those for the world.

My grandson announced last Wednesday that he has decided to go back to dance classes after all.  In September he told me that he had no intentions of ever going back. I think his little friend Allie has been talking to him at school and has persuaded him to dance again. This means that I will pick him up for dance every Monday night.

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October 12, 2001

 Code of Ethical Behaviour for Patients

  • Do not expect your doctor to share your discomfort.
  • Involvement with the patient’s suffering might cause him to lose valuable scientific objectivity.
  • Be cheerful at all times.
  • Your doctor leads a busy and trying life and requires all the gentleness and reassurance he can get.
  • Try to suffer from the disease for which you are being treated.
  • Remember that your doctor has a professional reputation to uphold.
  • Do not complain if the treatment fails to bring relief.
  • You must believe that your doctor has achieved a deep insight into the true nature of your illness, which transcends any mere permanent disability you may have experienced.
  • Never ask your doctor to explain what he is doing or why he is doing it.
  • It is presumptuous to assume that such profound matters could be explained in terms that you would understand.
  • Submit to novel experimental treatment readily.
  • Though the surgery may not benefit you directly, the resulting research paper will surely be of widespread interest.
  • Pay your medical bills promptly and willingly.
  • You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.
  • Do not suffer from ailments that you cannot afford.
  • It is sheer arrogance to contract illnesses that are beyond your means.
  • Never reveal any of the shortcomings that have come to light in the course of treatment by your doctor.
  • The patient-doctor relationship is a privileged one, and you have a sacred duty to protect him from exposure.
  • Never die while in your doctor’s presence or under his direct care.
  • This will only cause him needless inconvenience and embarrassment.

Will McGuffin, Author

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September 28, 2001

Today I received some very disheartening news. I am devastated. I received an email from the National Institutes of Health and it reads as follows: “We received the copies of your radiology films. Both Drs. ______ and _______ reviewed the medical records and films that were sent. Their impression is the adrenal gland abnormalities seen on CT are limited to the left side with some thickness and/or nodularity but this is not an unusual finding for your age (also noted by one of your physicians). The results of testing that has been done do not support a diagnosis of Cushing’s syndrome. Drs. _______and _________ do not feel that an adrenal cause is likely to be responsible for the medical problems and problems with weight gain that you are experiencing. Therefore, you are not eligible for their adrenal protocol at NIH. We appreciate your interest in our protocol. Please let me know where to return the films. We extend our best wishes to you. If you have any questions, please let us know.”

After receiving this email I felt like making a call to the nearest crisis centre and yelling “Funny farm here I come!” At this point a big jug of Lonesome Charlie looks mighty inviting.

I have had my fill of the brightest bulbs in the tulip patch telling me there is nothing wrong! I need to collect my thoughts and when I have the strength plot a new line of defense. This is getting to be beyond ridiculous.

Should I succumb to this mystery illness, I have instructed my husband to buy the biggest tombstone he can find. I want it placed in a prominent place in the cemetery and the message on it will read “DAMM SHE REALLY WAS SICK!”

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September 13, 2001

My mind has gone south and I don’t think it is coming back! A friend called me about 5:00 PM this afternoon. While talking to her I decided to put a frozen macaroni and cheese dinner in the oven. I opened the oven door and to my horror a meatloaf was doing laps inside the oven. Then I remembered. About two weeks ago I had put a ready mixed meat loaf in the oven for our dinner. I guess I never thought about it again. I had not even turned the oven on. I have no idea what we had for dinner that night. You can imagine the state of that meatloaf two weeks later. What I find amazing is that there was no smell until I opened that oven door!

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September 7, 2001

What a struggle to get up early in the morning after only three hours of sleep! Now if that was three hours of uninterrupted sleep maybe I would have a chance at fighting this debilitating fatigue.

I had to be in the city this morning for a 9:30 AM appointment with the ENT guy. This meant that I had to leave home at 8:15 AM. To make the drive bearable I turned on the Oldies Station and cranked the volume up. This certainly is one of the benefits of traveling alone.

I only waited 10 minutes before I was ushered into the ENT guy’s consultation room. He was very punctual which was much appreciated. The magazines in these doctor offices all are the same. I have often wondered who is in charge of supplying the reading material for these waiting rooms. Can’t be an intellectual giant.

The ENT guy did another hearing test. He informed me that he trusted his own lab. I am not quite sure what he meant by that but I agreed. Who am I to have an opinion on hearing labs?

I should mention that before he did the hearing test, the ENT guy asked me if I had ever had a CT Scan or MRI of my brain. I told him yes I had.

After the hearing test the ENT guy and I sat down for the consultation. He told me that I had significant hearing loss. He then asked me again if I was sure I had had a CT Scan or MRI of Brain. I told him I had had both a CT Scan and a MRI. He then said “Well then it cannot be a tumor since you have had the CT Scan and MRI and they did not indicate a tumor.”

The ENT guy then proceeded to tell me that I must have Meniere’s disease since no tumor had showed up on the CT Scan or MRI. He told me that I had a problem with pressure on the 8th Cranial Nerve. He also told me that symptoms caused by pressure on the 8th Cranial Nerve include tinnitus, hearing loss, dizziness, vertigo and nausea.

The ENT guy then asked me if I was taking any medications for Meniere’s disease. I told him that No Name had prescribed a drug called Serc, which tore my stomach apart. I was suppose to take Serc everyday but could not due to the horrendous stomach problems it caused. The ENT guy agreed that Serc could have this particular side effect and gave me a prescription for Bonamine. This is a drug I am to take when I experience the actual symptoms. Tried it and found it completely useless.

The ENT guy told me that there was nothing that could be done about the buzzing in my ears. Those damm bugs apparently have carte blanche to party day and night!

The appointment was over and I headed for home. Tonight my darling 7-year-old grandson is coming for his usual Friday night sleepover. Papa and grandson will go golfing first thing tomorrow morning. I cherish these Friday night sleepovers. No matter how miserable I feel, that little person has a way of making me forget my troubles.

 

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