Not Over Till The Fat Lady Sings

This morning was spent going through some of my medical test reports. I need to make some decisions regarding my non-existent medical care. How I will go about finding a medical doctor who will take the time and make the effort to help me find some answers is beyond my comprehension. I do know that I cannot go on much longer like this. Coping on a daily basis with the constant fatigue, pain, nausea and dizziness is no longer an acceptable option.

I read through a letter sent to Squirt by Ding-A-Ling on January 18th, 2002. Near the end of this letter, Ding-A-Ling writes and I quote, “Her fluid retention is most likely due to isolated right-sided heart failure, without left-sided heart failure. This may be due to cor pulmonale or previously unrecognized lung disease. The differential diagnosis would include obstructive sleep apnea, COPD, multiple pulmonary embolism, or valvular heart disease that couldn’t be due to her obesity.” .Don’t you just love the way doctors refer to an overweight person as obese?  After the tests were completed, it was obvious I never had right-sided heart failure, sleep apnea, COPD etc. etc. In the same letter Ding-A-Ling wrote the following, “With regards to the proximal muscle weakness and tiredness, the differential diagnosis could be connective tissue disease or polymyositis. We recommend an ESR and CK.”   I did have both these tests done on January 14th, 2002, the same week that the letter was sent.  My ESR was 54 (normal ESR levels are 1-20). This was not the first time that my ESR levels were over 50. Squirt, believing I had sleep apnea regardless of the test results, did no further investigations to see if I had connective tissue disease or polymyositis.

After re-reading this letter and paying closer attention to Ding-A-Ling’s mention of polymyositis,  I decided to do some research on this disease.  I found the following information on the Mayo Clinic site at this link:  http://www.mayoclinic.com/health/polymyositis/DS00334 .

Polymyositis (pol-e-mi-o-SI-tis) is a persistent inflammatory muscle disease that causes weakness of the skeletal muscles, which control movement. Medically, polymyositis is classified as a chronic inflammatory myopathy — one of only three such diseases.

Polymyositis can occur at any age, but it mostly affects adults in their 30s, 40s or 50s. It’s more common in blacks than in whites, and women are affected more often than men are. Polymyositis signs and symptoms usually develop gradually, over weeks or months.

Remissions — periods during which symptoms spontaneously disappear — are rare in polymyositis. However, treatment can improve your muscle strength and function.

It is the last day of the last long weekend of the summer. The painting was completed on Friday and the house is organized so I spent the weekend taking it easy. I did manage to hang a few more of my 298 pictures. ‘  (My grandson decided to count them.)

My daughter in law arrived on Wednesday, August 20th for a seven day visit. We had a lovely time. The only problem was that the seven days went by much too quickly. With her help I completed several projects around the house and yard. We also spent some time out and about sightseeing and shopping. Hopefully we will see both son and daughter in law at Christmas time.

My grandson and his parents headed into the city on Friday night to spend two nights at a hotel. We joined them on Sunday morning for brunch. Since it was my daughter and son-in-law’s wedding anniversary weekend, Grandson joined us for the day on Sunday. We had a great time at the zoo; the animals were exceptionally active.  I swallowed my pride and toured the zoo in a wheelchair.

In my previous diaries I have mentioned the Hustler, a doctor I saw on January 14, 2003.   A short time after the interview I received a letter from the Hustler which had been written on January 16, 2003

This past week my husband received a letter from the Hustler which I found rather amusing.

Portions of this letter read as follows:

Men may experience a drop on hormone levels that is gradual and not as obvious as women in Menopause. As a result many men and their wives accept the changes as due to aging.

The symptoms of Andropause are:

Lack of energy
Decreased interest in sex
Decrease in strength and endurance
Sexual dysfunction
Increased upper and central body fat
Mood changes
Poor concentration, memory loss, difficulty focusing
Poor sleep

Treatment is available for Andropause.

For a diagnosis you will need to have a history taken, be examined, and have blood testing done to determine your condition.”

How sad for our poor darling men. Imagine all the men between the ages of 45 and 65 who could be suffering from this terrible disease called Andropause. We women should really try to move mountains to help them. After all why should these poor dears suffer in silence? Suffering in silence is a female attribute. It would be most unfair to expect the men in our lives to do likewise.

I am seriously considering calling the Hustler’s office to see if I can make an appointment to be tested for Andropause. If I lower my voice just an octave I am sure I could pass myself off as a desperate male. What ever miracle drug is available for Andropause might just be the answer for my lack of energy, decrease in strength and endurance, increased upper and central body fat, poor concentration, memory loss and difficulty focusing and poor sleep. After all the Hormone Replacement Therapy for Menopause did nothing to help me. Maybe the Hormone Replacement Therapy for Andropause is the answer.

School starts on Wednesday and Grandson will be in Grade 4. Where does the time go? This past January was five years since my Graves Diagnosis. This June was three years since the first endo yelled at me in frustration and basically told me to go “fly a kite.” And life goes on!

After an incredibly busy four months, my life is slowly returning to normal; meaning normal for me. I have neglected my website and diaries a’nd I apologize.

My parents decided to buy a condo last summer and we bought their house this past January. The condo was finally completed at the end of June, 2003 and their big move took place on July 7th. Our movers arrived on July 11th to move all the heavy items and furniture to the new house. Thankfully we did not have to be out of our old house until July 31st so had nearly three weeks to move all the boxes I had packed. I do know that if I ever move again it will be feet first out the front door!

During these last four months, there have been many times when I felt like I had reached the end of my rope and could not go on with the enormous job of packing and moving. My solution was to sit myself down and tell myself that there was no way out and that regardless of the pain and fatigue I had to go on. It is amazing what mind over matter can do.

At the beginning of May, I dug up all the perennials at the old place and transplanted them into appropriate flower pots. In the following weeks I took a few plants at a time to the new house and planted them in the existing flower beds. I know that I could not have completed this task without the encouragement and help from my dad who will be 84 in October.

After being transferred around the country for 28 years, it was nice to move back “home” in 1995. Since 1995 we lived about 7 minutes by car from my parent’s house anf my daughter’s house. This last move has decreased that distance. My parents can look out of their condo windows and see my front yard. I now live just a block down the street from them. If I stand on my back deck I can see my daughter’s back yard. They live just a block and a half from my house. My grandson skateboards over every morning to water my plants and then usually drops by for a swim in the afternoon and early evening.

This summer has gone by much too quickly and my nine year old grandson will be back in school after the September long weekend. My one regret is that the summer has been to busy to spend time at the lake with him. To compensate, I registered Grandson for skateboard camp and private golf lessons.

After putting my search for answers to my medical problems on hold for the last 6 months, I have decided that come September I will have to resume this useless exercise. I need to find a doctor who actually cares enough to take the time to find a solution to my problems. Where I will find such a creature is beyond my comprehension. I have been experiencing excruciating bone pain for the last few months. The more intense pain is in my ankles, hips, shoulders and ribs. The flank pain is so severe at times it literally takes my breath away. The fatigue and exhaustion are mind numbing. I saw No Name twice this summer against my better judgment. Pain can make you do things you swore you would never do again. Both times I told No Name that I was experiencing unbearable pain. His solution was to give me medication. Apparently my pain is not important enough to warrant an investigation.

Now that the move is over with, the unpacking is done and the house is organized, I will strive to keep this site updated on a regular basis. Until next time take care and keep well.

My nine year old grandson has been sick since last week Friday. He has been experiencing terrible stomach cramps, diarrhea and temperatures of 102.3 . Yesterday morning my daughter called me to tell me that during the night he had noticed blood in his stool. She told me that she had called the “Communist Clinic” to try and make an appointment for Grandson with her family doctor. She was told by the receptionist that her family doctor was the doctor on call at the Walk in Clinic that afternoon and that she should bring Grandson in after 1:00 PM. My daughter asked me to pick them up at 12:45 PM so that they would be one of the first ones on the list to see the doctor at 1:00 PM.

Several years ago I had made a promise to myself never to darken the doors of the communist clinic as long as I lived. However, with my grandson’s health at stake I had no choice but to go. I picked up my daughter and Grandson and we arrived at the clinic at 12:45 PM. You can imagine our surprise when we discovered that we were going to be added to a long list of patients. The receptionist informed us that it would be a minimum one hour wait. Several people in the waiting room had been there since 11:00 AM.

Quite the medical system we have in this country when children with severe stomach cramps and diarrhea are made to wait two and a half hours before they can actually see a doctor! Yes, we waited a full two hours before my daughter and Grandson were called into an examination room. It took another thirty minutes before they had the privilege of a face to face with “the Princess.” We might as well live in a third world country. I guess we should be grateful that we do have the privilege of sitting on chairs under a roof while we wait to see these esteemed professionals. In some countries you would have to stand in line under a hot sun.

I am tempted to tell my grandson that when he grows up he should definitely become a doctor. He would have rooms full of people waiting to see him all day long and he would earn fabulous money just by giving them the privilege of a ten minute meeting with him.
My grandson provided the lab with a stool sample. The nurse called my daughter at home later that afternoon to confirm the blood. My daughter was told to be at the clinic the next morning at 8:30 AM to discuss this lab report. She and Grandson arrived at the clinic precisely at 8:30 AM only to be told by the doctor on call that nothing could be done for my grandson because the cultures were not back. I have no idea why this message could not have been conveyed to my daughter via telephone. It seems rather ludicrous to drag a sick child out of bed for an appointment only to be told to go back home and wait. Actually I have often wondered if some of our medical professionals have problems with the complexity of the modern telephone. The doctor informed my daughter that my grandson would have to wait for five days before any kind of treatment would be considered.

This whole experience further emphasized why I boycott the Communist Clinic. I would hate to think what would happen if a person had a life threatening emergency. It seems to me that our medical system is leaning towards survival of the fittest.

The Woman in the Glass

Author Unknown

When you get what you want in your struggle for self
And the world makes you queen for a day
Just go to a mirror and look at yourself
And see what that woman has to say

For it isn’t your boyfriend or family or friend
Whose judgement upon you must pass
The woman whose verdict counts most in the end
Is the one staring back from the glass

Some people may think you a straight-shootin’ chum
And call you a person of place
But the woman in the glass says you’re only a bum
If you can’t look her straight in the face

She’s the woman to please, never mind all the rest
For she’s with you clear up to the end
And you’ve passed your most dangerous, difficult test
If the woman in the glass is your friend

You may fool the whole world down the pathway of years
And get pats on the back as you pass
But your final reward will be heartaches and tears
If you’ve cheated the woman in the glass

Since I got my CT scan results from Trixie on April 29th, I decided it was time I gave No Name a call.  After all he made the CT scan appointment way back at the beginning of December, 2002.  I had the CT scan done on February 28th and to date had not heard a peep out of No Name.

I placed a call to No Name’s office yesterday morning and asked the receptionist to fax my CT scan results to me. She asked me if I would like to make an appointment to see the doctor. I told her that since I had had the CT scan done on February 28th and it was now May 5th, I thought it best that she just fax me the results. The receptionist then asked me to please hold for a moment. When she came back to the phone she informed me that she had just realized that No Name had left a message that I should be called with regards to my CT scan. My response was that it was a good thing I had called; if I hadn’t maybe they would never have remembered the message. I reiterated that I wanted the CT scan results faxed to me ASAP.  How can a doctor’s office treat test results in such a careless manner?

This morning’s mail gave me a real chuckle. I received a letter from No Name’s office, telling me that several unsuccessful attempts had been made to reach me by phone. The letter went on to say that No Name wanted to see me to discuss the CT scan results. What a hoot. I have caller ID on my phone and trust me; no number from No Name’s office has been registered on it in the last seven months.  Now I would call the letter I received this morning a “cover his butt” letter.

Results of 24 Hour Blood Pressure Monitor

I finally received a copy of the results of my 24 hour blood pressure monitor test done on November 7/8, 2002.

SUMMARY:

(mmHg) Minimum Mean Maximum

Systolic 101 147 178
Diastolic 43 82 108
MAP 67 105 94
Heart Rate 51 71 94

Above Stat Boundaries –

Systolic 83%
Diastolic 47%

Highest Systolic 178 mmHG 13:36 (1:36 PM)
Highest Diastolic 108 mmHG 17:36 (5:36 PM)
Lowest Systolic 101 mmHG 8:06 AM
Lowest Diastolic 43 mmHG 8:06 AM

Daytime Summary

mmHG Minimum Mean Maximum

Systolic 101 154 178
Diastolic 43 88 108
MAP 67 111 129
Heart Rate 51 75 94

Highest Systolic 178 mmHG 13:36 (1:36 PM)
Highest Diastolic 108 mmHG 17:36 (5:36 PM)
Lowest Systolic 101 mmHG 8:06 AM
Lowest Diastolic 43 mmHG 8:06 AM

Nighttime Summary

mmHG Minimum Mean Maximum

Systolic 115 130 149
Diastolic 52 69 99
MAP 76 93 120
Heart Rate 55 63 74

Highest Systolic 149 mmHG 23:06 (11:06 PM)
Highest Diastolic 99 mmHG 6:06 AM
Lowest Systolic 115 mmHG 4:06 AM
Lowest Diastolic 52 mmHG 4:06 AM

Maybe the low blood pressure at 8:00 AM explains why I feel so awful in the mornings.

Now I Lay Me Down To Sleep

Author Unknown

Now I lay me down to sleep,
I pray my sanity to keep
For if some peace I do not find,
I’m pretty sure I’ll lose my mind.
I pray I find a little quiet
Far from the daily family riot.

May I lie back – not have to think
About what they’re stuffing down the sink,
Or who they’re with, or where they’re at
And what they’re doing to the cat!

I pray for time all to myself
(Did something just fall off a shelf?)
To cuddle in my nice soft bed
(Oh no, another goldfish – dead!)

Some silent moments for goodness sake
(Did I just hear a window break?)
And that I need not cook or clean,
(Well heck, I’ve got the right to dream!)

Yes, now I lay me down to sleep,
I pray my wits about me keep,
But as I look around I surely know,
I must have lost them years ago!

 CT Scan Report

After enduring some intense pain this morning, I made an appointment to see Trixy this afternoon. Apparently I pulled a chest muscle last week while digging up some of my plants. At the time I felt a horrible pain and had the sensation that something was ripping. I stood quietly for a few minutes; the pain subsided; and I decided I wasn’t about to die and continued digging. I aggravated the injury yesterday while tearing packing paper and wrapping my pictures.

The doctor told me that it could take up to two weeks to heal; time which I really don’t have. I need to continue packing on a daily basis if I want to be ready for the move at the end of June. I know my limits and if I don’t pack every day I will get too far behind and run out of the little energy I can muster.

During the appointment this afternoon I asked Trixy for a copy of my February 29th CT scans of the thorax and abdomen. The results are as follows:

CT Thorax and Abdomen with Infusion: A biphasic study has been performed through the upper abdomen. Comparison is made to a previous study of August 10, 2000. Just anterior to the hepatic artery there is an oblong 1.5 cm. nodular density but this is likely a lymph node and was present on the previous scan. It does not have the enhancement pattern of the usual gastrinoma. The liver, adrenals, pancreas, kidneys and spleen are normal. The pelvic viscera are within the normal limits. The thorax is normal.

Impression:

A definite gastrinoma has not been identified. The nodule described is most likely a lymph node. Dictated March 4, 2003.

Since the big move is coming up at the end of June, I have decided to forget about doctors for a while. It is very obvious that they are not interested in my problems. I have enough medication refills to take me through the summer. Since I have been dealing with my debilitating symptoms for nearly 5 years I have become quite adept at finding solutions to help me cope. My stomach problems are covered up by Nexium. If I take a couple of Gravol about 45 minutes before I go to bed, I can sleep uninterrupted for 2 1/2 hours. One night a week I take a sleeping pill which allows me to get 3 1/2 hours of uninterrupted sleep. Because I am so sleep deprived I wake up in the morning extremely dizzy, nauseated and disorientated. I actually feel incredibly miserable. I make sure that I never have an appointment or meeting in the morning.  The hip pain I experience during the day I try to ignore. The hip pain I experience at night I medicate with aspirin. Aspirin takes the edge off the pain. The restless legs are impossible to treat as are the terrible adrenaline rushes that wake me up three to four times a night. My way of dealing with these two problems is to get out of bed and find something to do that will help take my mind off of the problem until I am able to sleep again. Thank goodness for computers and internet. I have grown accustomed to spending more than half my life in the bathroom. When I go uptown to shop for groceries I always stop in at our office for a quick bathroom break. To put that into perspective, the office is about 5 minutes by car from the house. Of course I know the location of all the bathrooms in the grocery stores and the mall. I have learned to deal with my constant thirst and dry mouth by never leaving home without two bottles of water. When I have activities on several consecutive days of the week, I take 10 mg. of hydrocortisone. My hearing is a lost cause but I just tell people if I cannot hear them. I decided it was silly to walk around pretending to understand when I haven’t heard one word. On days that my vision messes with me and I see black spots I just tell myself they are spots on the wall. When I see two grandsons instead of one I just remind myself that I only have one grandson. These coping strategies help me exist from day to day.

Today was D-Day; the day I had my first scheduled appointment with the new doctor. I approached this appointment with absolutely no expectations. You cannot be disappointed about something you did not anticipate or expect. I remain ambivalent about this new doctor so for the next while I will refer to her as Trixy. Once I have sorted out how I feel about this appointment I will give her a more appropriate name.

Trixy wanted a quick run down of my complaints. Lord have mercy; how does one do a “quick run down” when the body is under siege. I had listed approximately 6 of my chief complaints when I noticed her eyes glazing over and the well recognized vacant look appear on her face.  I quickly realized that I had reached my quota of medical complaints for one visit. We must be careful not to overwhelm our esteemed medical professionals. That would be rude. We would not want to tax their brains.

In case any of you are wondering, I have not heard back from the doctor that ordered the CT Scan I had done on February 28th. This however does not surprise me. My intuition is well tuned and I had expected not to hear back. I had asked Trixy to get a copy of the CT scan results for me when I saw her in the emergency clinic at the beginning of March.

Trixy informed me today that she had received the results. The CT Scan reads as follows: “No Clinical Information: possible gastrinoma. CT Thorax and Abdomen (WITH INFUSION): A biphasic study has been performed through the upper abdomen. Comparison is made to a previous study of August 6, 2000. Just anterior to the hepatic artery there is an oblong 1.5 cm. nodular density but this is likely a lymph node and was present on the previous scan. It does not have the enhancement pattern of the usual gastrinoma. The liver, adrenals, pancreas, kidneys and spleen are normal. The pelvic viscera are within normal limits. The thorax is normal. Impression: A definate gastrinoma has not been identified. The nodule described is most likely a lymph node. ”

The CT scan report I have from 2000 does not mention an enlarged nodule or swollen lymph node. I guess they just decided to leave that bit of information out of the 2000 report. Mind you, if this is a “swollen lymph node” it might explain my ESR levels of 53 and 58.

I had the 2000 CT scan films sent to the Hormone doctor in California. He had one of his radiologists read the CT scans. According to the radiologist in California, my adrenals were mildly enlarged and nodular. When I mentioned this finding to my doctors I was told in no uncertain terms that American doctors like to exaggerate. Could it be that the Canadian radiologist missed this mildly enlarged and nodular adrenal gland in 2000? Could it be that the Canadian radiologist just neglected to report this “swollen lymph node” in 2000?

At the moment I have no idea how I will proceed. I have four months worth of medication namely Synthroid, Nexium and Starnoc. I take Starnoc once a week so I can get 3 hours of uninterrupted sleep. Hopefully I will wake up one morning soon with a great idea on how to solve my medical dilemma. I now realize that I will have to solve it on my own.

A gastrinoma is a tumor in the pancreas or duodenum that secretes excess of gastrin leading to ulceration in the duodenum, stomach and the small intestine.

After a month long struggle I finally got my website problems resolved today. It is great to be able to publish again. Hopefully it will not take me too much longer to get my diaries up to date. I would hate for any of you to miss out on my exhilarating, energy filled, and riotous days and nights.

The weekend was busy and I managed to accomplish everything I had planned. Darling grandson came for a sleep over on Thursday night. My car had been involved in a minor vehicle accident and I took it to a body shop this week to have it fixed. They gave me a 2003 red Explorer as a loaner vehicle to drive until my car was fixed. I picked my grandson up at school on Thursday. As we were walking to the place where I usually park Grandson turned to me and said, “Nana how much further is your car?” I said, “Oh just a few more feet.” I then walked over to the Explorer, opened the front door and said to my grandson, “Why don’t you just jump into this vehicle and we will take it for a drive.” The look on the kid’s face was priceless! He looked at me in utter dismay and said, “Nana have you gone completely crazy?” As I made my way around the vehicle to the driver’s side I told him to hurry up and hop in or he would miss the ride.” He stood rooted to the sidewalk in complete shock. I finally let the poor child off the hook and showed him the keys. Mind you, once he realized I had permission to drive the vehicle he was quite impressed. It is somewhat embarrassing to drive down the street and have your grandson roll down the window every time he sees a friend and shout, “Hey look what my Nana is driving!” I had no idea a red Explorer would have that kind of impact.

We had dinner with friends on Friday evening. The weather was gorgeous and we were able to sit outside on their screened in deck. What a treat to be able to enjoy the outdoors again especially since the mosquitoes haven’t yet materialized.

We had daughter, son-in-law and grandson for dinner on Saturday night. Of course we had to have the traditional Easter basket hunt. Grandson did inform me that he no longer believes in the Easter bunny. Oh well I guess it was bound to happen sooner or later. By Saturday night I was absolutely exhausted and wondered how I would make it through another dinner and family gathering on Sunday.

When I woke up on Sunday morning I felt like I had been run over by a truck. This past week I have not managed more than three hours of sleep a night. This lack of sleep does not encourage a feeling of well being. I figured if I wanted to make it through the day I would need a little help from my “friends”. When I realized this past winter that my doctors would just as soon ship me off to the glue factory as help me, I ordered some hydrocortisone 20 mg. from an on-line pharmacy. I have taken six since November which included a two birthday parties, Christmas, New Years and now Easter.

After taking a 10 mg. dose of hydrocortisone around 10:00 AM on Sunday morning I had the energy to make a seven layer salad and prepare two trays of veggies for the dinner later that afternoon. I was able to enjoy the family gathering and had enough energy to video tape the three great grandchildren’s Easter basket hunt at my parents’ house. I did crash around 6:00 PM but at least I had 6 hours of enough energy so that I could have a good time.

When you get shelved by the medical profession you begin to develop your own coping techniques. Family events are much too important to be ruined by ill health. I decided months ago that I would count on my “little friends” to help me make it through these events without looking like death warmed over and dragging my butt around. The doctors may want me shipped to the nearest glue factory but this old mare will not go quietly into that dark night.

The weather is beautiful today. The carpeting on the deck out back is warm when you walk on it in bare feet. If the weather keeps improving like this we will be able to swim in a couple of weeks.