September 11, 2017

When I woke up this morning and turned on the news I was reminded of the terrible disaster that hit the US on this day in 2001.  I remember turning on the television that morning in September and seeing the horrible pictures of the attacks on the World Trade Centre.  At first, I did not believe what I was seeing.  Hopefully, we will be spared from future attacks.

Seems that fall has arrived early this year.  The geese are back at their watering hole on the Museum grounds.  Seems a bit early for them to be heading south.  We have had several nights of frost and cool daytime temperatures.   This week the temperature forecast is for 32C on Tuesday and 29C on Wednesday.  This change in temperature, humidity, and pressure plays havoc with my body.  Getting out of bed in the morning is sheer torture.

Finally finished my new website.  Also revived my old chat room and placed it on the new site.  The new site can be found at Autoimmune Diseases Chat.

To begin with, the weekly chats will take place on Monday evenings at 7:00 PM CDT.   The purpose of these chats is to give people suffering from an autoimmune disease the opportunity to connect with others with similar conditions.  If you are interested in joining us at chat please email widebertha@gmail.com for the password.  The site also has a message board.

As I mentioned earlier I have been trying to ride my bike (or I should say three wheeler) on a daily basis.  It seems that a bike ride brings on restless leg syndrome.  Restless leg syndrome is awful; nothing seems to help.  The only course of action is to wait it out.  The involuntary leg movements eventually stop but not before I have acquired many more grey hair.  You add the huge bags under my eyes, the red Rosacea rash on my cheeks and forehead and I am truly a sight for sore eyes.

It’s nearly midnight and I should try to get some sleep.  Goodnight, sleep tight and don’t let the bed bugs bite.

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September 9, 2017


The Pituitary Patient Bill of Rights 
With heartfelt thanks to Robert Knutzen 

As a patient afflicted with a chronic, often lifelong disease, I wish to affirm the following:

I did not bring this disease upon myself through any form of omission or commission.

I know, however, that my illness and its many symptoms and manifestations are poorly understood, and often imperfectly treated, with results that are unacceptable in any medically civilized society.

I affirm that I am a valuable human being: to myself, my family and the society in which I live and work. My right to proper diagnosis, care and management shall be second to none.

Either I or my fellow patients may have our lives and the length and quality of life at constant risk.

I cannot allow my rights as a member of society to be trampled on. I realize that it is not currently politically popular to give me my fair share of quality medical care, research, education, and mental, moral, psychological or societal care.

For these and other reasons and on behalf of myself, my loved ones, my family, and my fellow patients, I claim the following:

Our Rights:

Pituitary diseases, tumors and the resultant hormonal imbalances shall be recognized as a serious, major public health problem afflicting a large segment of the world’s population.

The financial and intellectual resources of my government and our public and private health services shall be as fairly allocated to me and my disorder as they are to any other life-threatening and life-altering disease.

I have a right to an early and appropriate diagnosis, treatment, care and medical intervention by the experts in these fields of medicine.

I have an inalienable right to be told of – and allowed to use, whenever possible, any and all medications and treatment methods past, present or future – which will complete or assist in my healing.

Upon completion of any medical evaluation, treatment and care, I am entitled to the emotional and psychological care afforded anyone else with psycho-socially affective disorders.

I reaffirm my right to be treated completely so I may reclaim my place in society and my family as a fully functioning and contributing member.

I shall not be discriminated against in my workplace or any other part of society because of my physical, mental or emotional state.

There shall not be any financial, insurance, job, or promotional stigma attached to my disease’s discovery, medical care or emotional recovery. My future life shall only be limited by conditions not under man’s ability to rectify.

My family and coworkers have a right to be informed and counseled about my illness and Its many manifestations. In order for them to understand and accept the temporary limitation to my job performance and my family obligations, they must if possible, become part of my healing environment.

I reaffirm to the world: I am a valuable member of the society and family of man. My life is too valuable to waste. It is too costly to society and too detrimental to my family to allow me to merely exist at their sufferance and largesse.

I have the right to be believed! Just because a physician has not yet heard of, or seen, my symptoms before, does not mean they are not real and deserving of medical care and further investigation.

With permission from:
Robert Knutzen, Pituitary Network Association

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August 30, 2017

Summer is almost over.  We spent last weekend at Buffalo Resort on Falcon Lake with our daughter Natasha, her partner Mike and his daughter Melissa. Melissa celebrated her 11th birthday while at the lake.  She has been collecting porcelain dolls and has just started reading the Anne of Green Gable books.  I was lucky to find a porcelain Anne of Green Gables doll to give her for her birthday.IMG_0893

We arrived at Buffalo Resort late afternoon on Friday. Thankfully by leaving right after lunch we avoided most of the lake traffic.  After settling in went to the Mall to do some shopping.  Later that evening we enjoyed the delicious birthday cake Natasha baked for Melissa.  Saturday was spent relaxing, reading and watching the rain. Cold enough to turn on the heat in the cabin.   Sunday weather was warmer so Peter, Mike, and Melissa went to Caddy Lake and took a boat through the tunnels.  We had a bonfire both evenings.  Check out was at 11:00 AM Monday morning after which we headed for home.  I managed to survive the weekend without too much pain and nausea.   So grateful for pain medications and Gravol. However, I realized that I no longer have the ability to walk as far as I would like.

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One of the things I really miss is going for a bike ride.  When I was a kid, probably about 9 years old, my dad got me this really neat brand new CCM Bicycle.  I had many an adventure with that bike.  Sadly in the past year the dizziness and nausea have become such that I can no longer trust my ability to maintain my balance.  This spring my husband surprised me with a new bicycle or rather an adult tricycle.  At first I was not sure I wanted to be seen riding this “tricycle” but after a few rides I changed my mind.  No more worries about being able to balance and the ability to stop and rest whenever the need arises without having to get off the bike.

It is time for me to try and get some sleep.  Tomorrow will be here soon enough.  Will try to post to  my blog on a more regular basis.

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July 23, 2017

LuellatwoWe are almost halfway through our summer here in Manitoba and the nights are getting noticeably longer.  My wish to spend this summer at the lake is turning out to be just a pipe dream.

My cataract surgery took place on May 16th, 2017.  It was quick and pain free.  It is such a pleasure to read again without experiencing an overwhelming fatigue.

We flew to Boston on June 23rd to visit son and daughter in law in their new home.  They moved from Seattle to Boston in March.  The west coast is really quite different then the east coast.

My family doctor is leaving her practice and moving to another city as of July 31st. Thankfully she has made arrangements for me to become a patient of another doctor.  The doctor shortage in Manitoba is becoming rather ridiculous.  Surely we could allow more students into medical school to prevent such a shortage.  However the almighty dollar is always the bottom line.

My feet and lower legs are terribly discoloured and I finally had some tests done to try to figure out the cause.  Thankfully there is not a problem with circulation or blood clots. However I would really like to know the cause.  It looks awful.

I finally got rid of the overwhelming fatigue I experienced before my cataract surgery only to have it return when I started taking medication for Rosacea.  Rosacea (row-zay-sha) is a common, chronic, inflammatory skin condition causing redness on the face and for some, small red bumps and pimples.  The causes of rosacea are unknown but it is thought that a faulty immune system could be involved.

My problem these days seems to be writer’s block.  Will write more soon.

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March 27, 2017

An overcast day today which suits me just fine.  If I am honest I would have to admit that I prefer overcast days to sunny ones.

We were fortunate that last Saturday morning, Brian , the floor guy,  was able to rip out and dispose of our basement carpeting and underlay.  If you read my last two posts you will know that we had a flood disaster in our basement the weekend of March 18th.  Thankfully the wet carpet was disposed of before it started to smell.

On Monday March 20th we went out to shop for new flooring to put in the basement.  We decided on a somewhat new product; vinyl.  It looks like hardwood and even though it is put right on the concrete basement floor it has a bounce to it.  Actually it is a very nice product.   It is also water proof and in case of water damage the planks can be lifted off the floor to dry out. Now I will have to organize the basement and hopefully get new furniture.  Whether the furniture bit will happen is any body’s guess.

I am somewhat concerned about some of the symptoms that have gotten worse or new     ones that have popped up.  As you probably know I have been diagnosed with cirrhosis of the liver.  CT scans and blood work every six months are very important.  Cirrhosis of the liver can lead to liver cancer which we all know is a death sentence.  I still find the diagnosis of cirrhosis hard to believe since I do not drink alcoholic beverages.  One thing I cannot abide is drinking an alcoholic beverage since they give me migraine headaches from hell.

According to the Mayo Clinic and I quote,  “a wide range of diseases and conditions can damage the liver and lead to cirrhosis.”  The most common causes are:

  • Chronic alcohol abuse
  • Chronic viral hepatitis (hepatitis B and C)
  • Fat accumulating in the liver (nonalcoholic fatty liver disease)
  • Iron buildup in the body (hemochromatosis
  • Poorly formed bile ducts (biliary atresia)
  • Inherited disorders of sugar metabolism (galactosemia or glycogen storage disease)
  • Genetic digestive disorder (Alagille syndrome)
  • Liver disease caused by your body’s immune system (autoimmune hepatitis)
  • Destruction of the bile ducts (primary biliary cirrhosis)
  • Hardening and scarring of the bile ducts (primary sclerosing cholangitis)
  • Infection such schistosomiasis
  • Medications such as methotrexate

The likely causes for my cirrhosis of the liver would be autoimmune hepatitis or/and fatty liver.  Sadly, having one autoimmune disease usually leads to more.  Becoming a Beluga whale after the powers that be destroyed my thyroid with Radio Active Iodine certainly played a part in my developing a fatty liver.  Oh to be able to turn back the clock.   If I could go back in time I would not allow any one of those space cadets in their space suits to come near me with that lethal drink in a lead cup.  If I could do it over again surgery would be my choice of treatment.  I can not reiterate the following often enough; do not choose Radio Active Iodine.

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March 17, 2017

computerhackerAnd I thought yesterday was a miserable day. As I mentioned in yesterday’s post it had rained; rained a lot. I went down the basement last night around 10:00 PM to sort out some of the pictures that need reframing. Went to bed around midnight. Woke up at 5:00 AM, made a cup of coffee and hobbled back downstairs to finish up the project started yesterday. You can imagine my shock when I reached the last stair and stepped into 2 inches of ice cold water. The good news is that the shock cleared the cobwebs from my brain; at least for a short period of time. The bad news is that the basement floor is covered with 2 inches of water. The idiot who invented window wells should be locked up. Not only is the ground frozen solid but so are the drainage pipes in the window wells which leaves the water only one way to drain and that is into the basement. Peter managed to get the pipe in the window well to drain by removing as much ice as possible and pouring car window washer fluid down the pipe. At least that has stopped the water fall coming from the window. Now we wait for the clean up crew and the insurance adjuster. Isn’t life grand?

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March 16, 2017

computerhackerIt is raining outside; has been for the better part of the afternoon. Every bone in my body feels like I have been run over by a truck and I feel a rant coming on. After my doctor’s appointment today, I am ready to believe that I might be heading towards insanity. After all Albert Einstein is broadly credited with exclaiming “The definition of insanity is doing the same thing over and over again, but expecting different results”. I have decided that a favourite pastime of doctors is to see how far they can push women like me. We are easy prey! They see a 60 something woman walk into their consultation room and they think, “How crazy can we make this one before she stops seeing me?” According to the doctors I have seen the fact that I am 60 something years of age determines immediately that my symptoms are either hysterical or menopausal. They are the crazy ones if they think that after 60 years of living my goal in life is to become “hysterical”.Finally received two appointments in the mail today for my eye surgery.  the pre-surgery appointment with the surgeon is scheduled for April 20th.  The actual Cataract surgery on my right eye is scheduled for May 16th.  If I sound a tad impatient; it has been 2 1/2 years since I was told by my optometrist that I needed emergency surgery on my right eye .  Actually that particular eye exam was rather frightening.  For someone who had always had 20/20 vision it came as a terrible shock to realize that when I covered my left eye I could not read the largest letters on the eye chart.   Since when does emergency surgery mean a waiting period of 2 1/2 years?  Hopefully once I have recovered from eye surgery I will be able to once again enjoy reading.  At this point I can no longer read more than 2 hours at a time.  My eyes just get too tired.

 

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