Not Over Till The Fat Lady Sings

On September 20th I received a phone call from the secretary at No Name’s office telling me that the tests I had done on September 15th had come back either below normal or above normal.  Apparently he wanted to see me as soon as possible and she wanted to know when I would be available for an appointment.  I told her I was available anytime; my calendar is not filled with daily riveting events.  She informed me that he was booking into October so I could not see him until October 5th.  Hopefully when I see him on Tuesday he will agree to order tests to determine my adrenal function.  I will not hold my breath. 
 
It is cloudy, windy and cold today.  We had a hard frost several times this past week and the forecast predicted snow last Tuesday.  Thankfully we only got rain.  This morning at 11:00 AM it was only 4C (39 Fahrenheit) and tonight it is suppose to go down to -4C (24 Fahrenheit). 
 
My blood pressure is doing strange things.  It continues to hover between 100/63 and 70/63 which is quite a change from this past winter, spring and early summer when it would spike to 234/110 and 220/120.  I have absolutely no idea why this is happening but it explains why I am dizzy so much of the time.  My arms and legs are black and blue from crashing into walls when I cannot keep my balance.  When I get up from a lying down or sitting position, the room will move in every direction; very disorientating.  I am hoping that Tuesday’s appointment will yield some answers. 
 
Hockey camp concluded on Saturday with a hockey game. Of course Grandson was in fine form but I will freely admit that I am terribly biased.   Hockey season begins in two weeks which means this Nana will be dragging her butt to the arena come hell or high water.  There are some things in life that I refuse to miss even it means using up all “my spoons” for that particular day.  

Next weekend we celebrate Thanksgiving here in Canada.  The official Thanksgiving Day is Monday, October 11th.  My father will be celebrating his 85th birthday on October 10th.  I will attempt to cook Thanksgiving dinner on Sunday.  Thankfully my daughter, who is a marvelous cook lives just a block and a half away and I can always call on her if I find myself in a cooking crisis.  My mom is still suffering from horrendous intermittent pain in her thigh.  Thankfully the episodes are becoming less frequent.  She has been able to sleep for 7 hours during the night for the last 4 nights.  I am hoping that she will feel well enough to venture out next Sunday and join us for dinner. 

Keep warm and keep your fingers crossed that the snow stays away for at least another two months.  I would also like to wish Canadians a wonderful Thanksgiving weekend.

We experienced a major downpour early this evening; within minutes the major streets were flooded.  I was in charge of registration at Ukrainian dance during this time and I dreaded going home to check my basement.  Luckily, the repairs on the window wells prevented any water from getting in.

Today is not a good day for journaling,  I am experiencing writer’s block.

September 8th is a day I will never forget.  My phone rang at 8:30 AM and it was a call from Toronto.  The caller was in tears and told me to hurry over to my parents’ house because dad had found mom unconscious on the kitchen floor.  She had telephoned our parents seconds after my dad had found mom. 
 
My mom had been suffering from horrendous pain in her thigh for several weeks.  When she went to emergency on Tuesday, September 7th the doctor had given her Amitriptyline and Morphine.  She was told to take the Amitriptyline at bedtime and the Morphine as soon as she felt pain.  She woke up on Wednesday morning; went to make breakfast and collapsed on the kitchen floor. 
 
Even though I live 5 minutes away from my parents’ house that block and a half car ride was the longest ride of my life.  My mom had been diagnosed with a heart problem in July.  There is a problem with both her Arterial valve and Mitral Valve and the cardiologist told her that surgery was to great a risk to consider.  We were told that she would eventually have black outs due to this condition.   When I got to my parents’ house my mom was sitting up but did not know her name or my name.  I called 911 and even though the ambulance arrived in less than 10 minutes it seemed to take forever.  By the time my mom arrived at emergency she was able to tell us her name and what happened before her blackout. 
 
The doctors were unable to tell us why this happened to our mother.  They thought the black out was caused by a combination of the medication and her heart problem.  
 
Sadly, we did not feel that our mom was “safe” in emergency.   When I noticed that my mom was having a hard time breathing, the response I got from the medical staff was a shoulder shrug and the question, “Are you sure she is having trouble?”  Meanwhile, my mom was struggling to take a deep breath.  When this happened I felt like throwing a fit to beat all fits but that of course would have been detrimental to my mom. 
 
Since September 8th, the family have been taking turns staying with mom.  One daughter, a surgical nurse, arrived from Toronto on Monday and she stayed with my parents until today.  Her medical experience was a godsend.  Thankfully my mom’s pain is slowly decreasing in intensity and in the number of times it occurs in a 24 hour period.  It has been very difficult to watch my mom experience such intense pain.  All I can do is try to comfort her but it is not enough.  Up until 9 months ago my mom ran circles around me.  She was a very active volunteer for several organizations and was involved in a number of committees and women’s groups.  She and my dad were also involved in a number of senior organizations.  They each have a vehicle and would spend their days going from one activity to the next.  The lifestyle change my mom has had to make this past spring due to her heart condition has been a difficult adjustment.  She loves to read so I have been making regular trips to the library to keep her in reading material.  Since the spring she has been reading approximately 25 books every three weeks. 
 
This experience has been a difficult one for the whole family.  Remember to cherish your parents and spend as much time with them as possible; life alternating changes can occur in a split second. 
 
Needless to say I am exhausted.  Minutes after I received the call from on September 8th, I began shaking so badly I was scared I wouldn’t be able to drive my car.  It was the strangest thing; my whole body was shaking and the room was spinning.  I managed to get dressed and by the time I ran out the door I had some semblance of control over the shaking and dizziness.  Mind over matter!  
 
My latest appointment with No Name took place on September 15th.  He ordered more blood tests which included a full thyroid panel and PTH.  No Name has concluded that I would benefit from tests to determine adrenal function and I am hopeful that these will be done in the next few weeks.  Of course, I am expected to do the research on what tests should be done. 
 
I am no longer shocked by these requests.  Most of the tests that I have had have been at my request after spending hours researching symptoms on the internet.  Once I have presented my case and documented the reasons why I want a particular test done, the doctor agrees with me.  I suppose I should be grateful that he orders the tests I request.  I would be a wealthy woman if I had been paid for all the time I have spent researching and implementing the tests and procedures I have requested in the hopes of finding a diagnosis.  
My mom has asked me to thank all my on line friends who have expressed concern for her and who have upheld her in their prayers.  We are so very thankful for your kindness and thoughtfulness. 

My grandson is absolutely ecstatic.  I purchased airline tickets today for my husband, daughter, son-in-law, grandson and me.  We will be flying to Seattle, Washington to spend Christmas with our son and daughter-in-law.  My grandson has never experienced Christmas without snow.  I plan to stock up on books and of course a visit to Seattle has to include a feast of Pelmeni at the Russian restaurant not far from my son’s house and several trips to pick up Krispy Creme donuts. 

This weekend I will be bringing in the Mandevilla , spinach plants and ivys for the winter.  The temperatures at night are getting to close to freezing to risk leaving them out much longer.  The Farmers Almanac predicted snow for our area by the third week in September.  Thankfully that has not happened. 
 

It has been raining all day; it appears as though our summer is over unless of course I blinked and missed it.  We had a total of five days during the month of July and August that a person actually felt like they wanted to spend the afternoon in the pool.  The Farmer’s Almanac suggests that we can expect snow by the third week in September.  I can only hope that it is wrong. 
 
No Name’s receptionist called me on Tuesday afternoon to tell me that he wants to see me as soon as possible to discuss the results of my latest blood tests.  My appointment is for September 3rd.  I am keeping my fingers crossed that these blood tests will finally solve my medical dilemma.  As crazy as that sounds, it is the truth.  After living like this for six years I am ready to accept almost any diagnosis if that diagnosis would enable me to have treatment that would make me feel human for a change. 
 
If I woke up one morning without severe pain, dizziness and nausea it would truly be a miracle.  If I could sleep through just one night without adrenaline rushes, pain and leg cramps it too would be a miracle. 
 
My appointment with the Old Hippie, the blood pressure specialist was scheduled for September 1.  Two weeks ago I received a letter from his clinic that my September 1st appointment has been cancelled and rescheduled for October 6th.  It is obvious that the Old Hippie does not consider my fluctuating blood pressure a serious problem.  The first and last time I saw him in April, he told me that he wanted to see me in six weeks.  This appointment has been rescheduled so often that I am wondering if he ever plans to see me again.  Maybe blood pressures of 234/110 or 198/120 are nothing to worry about. 
 
It has been a discouraging week and I have made a terrible mistake by recommending my friend Angie as someone who could take over the administration and webmaster duties of a certain dysfunctional website.   There are actually two dysfunctional websites but thankfully my friend was only involved with one of them. 
 
Angie has a 4mm pituitary tumor and has Cushing’s disease.  She does Graphic Design and Website administration from her home.  Angie spent hours and hours during the months of June and July on this site setting up a new homepage, organizing the files and links and setting up a new message board.  Angie incurred expenses with all the long distance phone calls she had to make on the website owner’s behalf.  The owner of this site assured Angie that she would be paid in full.  Sadly, the cheque that this site owner sent to Angie bounced.  It was sent back to Angie stamped “Payment stopped.”  Angie cannot afford to absorb the cost of these expenses and I feel so badly for her.  I wish I had never ever recommended her to this unethical site owner.  How could I have been such a fool and get my dear friend Angie involved with this site?   I really thought that Angie would benefit from this experience but instead she has suffered incredible stress and financial losses.
 
Upright and honest people do not send cheques for services rendered and then stop payment on those cheques.  Honest and upright people who accidentally write out a cheque without sufficient funds in their bank account would immediately correct that error.   They would make sure that the person who had received the cheque that “bounced” was compensated for the amount of the cheque and the expenses incurred by having such a cheque go through their account.  The person who wrote the bad cheque to my friend Angie insisted that the money had been withdrawn from this person’s bank account and insisted that this person’s bank had the deposited cheque in their possession.  When confronted with photo copies of the “bounced” cheque still in Angie’s possession, this person then insisted that Angie had not put in many hours on this person’s site and that Angie had not wanted to be paid.  The only way to describe these comments is delusional.  Since this site owner lives in another country and Angie lives in Canada, I suppose this person is quite confident that they can get away with fraud.  Angie has kept all the emails from this site owner.  The RCMP will be interested in the emails promising “payment in full”.
 

We arrived home from Brandon, Manitoba about 4:00 PM this afternoon; tired but very happy that we had made this trip.  Brandon is a three hour drive.

Brandon was a smashing success.  Jani, her husband and son and my husband, grandson and I met up on Friday around 6:30 PM to have dinner together. I recognized Jani as soon as she came off the elevator. It was so amazing to finally meet her in person. She is a wonderful, kind hearted and soft spoken woman with a great sense of humor and is exactly who she says she is. I hope you all have the privilege of meeting her some day.

Within minutes of meeting, my grandson, age 10 and Jani’s son, age 8 were talking a mile a minute; you would have thought they had known each other forever.  The boys came to Brandon well equipped to have a good time; each brought their little TV’s, Xboxes and games, movies and skateboards.  Between rain showers on Saturday afternoon, my husband took the boys to a skateboard park in Brandon.  Of course, they also spent time in the hotel swimming pool and on the hotel water slides.

Saturday morning Angie arrived to join us for breakfast. Angie too is exactly who she says she is. She has the cutest little red car.  She is a very sweet and kind hearted woman with a great sense of humor. Jani and I both loved her facial expressions. I hope someday you have the privilege of meeting Angie as well.

We lingered over breakfast and then made our way to Jani’s hotel room. We talked and talked and then talked some more. It felt really good to be with two women who understand what it feels like to be sick and tired. We spent the whole afternoon together.

Around 5:00 PM Angie went home and Jani and I decided we both needed to take a break and rest. It is so nice to be with someone who understands what it means to be so exhausted that you just have to take some time alone. We met up with Jani, her husband and son at 6:30 PM and went to a restaurant in Brandon for prime rib.

After dinner, the husbands went out for a drink and the boys played their games, had another swim and watched a movie.  Jani and I participated in the Saturday evening chat.  Sorry we were a bit late to chat and missed some of you.  Dinner took longer than we had expected.

Sunday morning all of us including Angie met for breakfast. Then it was time to say goodbye. Angie had a wonderful idea; she said that we should make this a yearly event. Jani and I agreed.

I must say that this was one of the nicest weekends I have had in a long time. It was amazing how well everyone got along including the husbands and the boys.  Thank you, Jani and Angie for making it a truly fabulous weekend.

Beware, the drama queens could be coming to a site near you.  Thankfully I have been warned by reliable sources and have located the IP numbers of the offending parties.  Strangely enough, these same drama queens have an overwhelming need to visit my site on a regular basis.  It might be a good idea to post their IP numbers the next time they pay a visit.
 
The needy Queen Mother has not retracted the falsehoods posted on her dysfunctional site.  It is really pathetic that some people have so little joy in their lives, that their only source of entertainment is searching the web for people and sites to harass.  Maybe someone, somewhere, will create a support forum for the unhappy, unfulfilled and bored drama queens.

The readers of my blog have put up with my whining and complaining about the medical profession.  I have decided to include this contract for a pushy RAI doctor to give you some idea of the problems caused by Radio Active Iodine.

1.  You agree to accept 100% responsibility for any adverse side effects I may suffer if I take I-131 at your request with your assurance that this treatment is 100% safe, for the duration of my life, especially if I am kept in any hypO state because of lack of proper treatment from yourself. This will include:

-loss of work because of hypo symptoms that may become so debilitating I can’t function properly or without pain;

-weight gain, you will accept responsible for any and all new wardrobes I will have to buy in the duration of my life should I experience weight gain because of being in a hypo state with lack of proper treatment, proper labs and proper replacement hormone;

-you will be available 24 hours a day, giving me access to your home phone number, your cell phone numbers, your pager number, your e-mail address, and take any phone calls I place into your office, your home, your cell phone or your pager; should I become depressed and need to talk; should I not be able to sleep, and need to talk; should I just need to talk or ask questions.

2.  Should I be continuously cold, because of being left in a hypO state, it will be your responsibility to see that I have whatever I deem necessary to keep warm.

3.  You will accept responsibility for all hair appointments, hair and nail treatments should I suffer from hypO symptoms that will cause my hair to become brittle, break or continue to fall out or affect my natural nails;

4. You will accept responsibility for any and all fertility treatments should I not be able to conceive caused by your treatment keeping me in a hypO state for my individual set point;

5.  You agree to work diligently with me to make sure I do NOT go hypo in any form…this will save time and effort for both of us, and money for you. This will include working diligently to find my set point, where I feel my best.

6.  You will accept responsibility for ALL ophthalmologist visits and any surgeries that may occur as a result of I-131 bringing on or worsening my eye disease.

7.  Should I get the eye disease or my existing eye disease worsens after treatment with I-131 you will accept financial responsibility for all eye drops, eye gels, tape to keep my lids closed over night, steroid treatments, eye radiation and surgeries.

8.  If my eyes become so bad I can no longer drive and must use public transport or be driven, you will assure me that I will get to wherever I need to be day or night.

9.  You will monitor me for the duration of my life using the Free T3 and Free T4 lab tests so we both have a clear picture of what is going on with the actual thyroid hormones. You may run the TSH for YOUR benefit but it is not to be considered in any adjustments of my hormone replacement medications I will have to be on for the rest of my life. The TSH will become your financial responsibility.

10. You will NOT treat me as a lab value but will adjust my hormone replacement meds based on symptoms more so than lab values.

11. You will be open to using Armour Thyroid or a combination of T3 and T4 supplements, a compound prescription using a time released T3 with T4 hormone replacement so that I may remain balanced throughout the day should *I* deem it necessary that T4 replacement is not enough for me.

12. You will keep close watch on ALL thyroid auto antibodies until they disappear. This will include TSI, TPO, Thryoglobulin, TRAb, both blocking and recepting, as well as the standard antibody tests in the standard thyroid anti auto antibodies panel. Should these remain high 3 months after I-131 treatment, you will then prescribe and pay for the anti-thyroid drug that I may be able to take, until these antibodies are no longer registering in my labs. This will assure me that you are willing to also address the autoimmune nature of this disease, rather than just ablating my thyroid and considering this enough.

13. You will accept financial responsibility for all necessary treatment, for the duration of my life, should I ever get any of the cancers associated with the use of I-131, this will include, cancer of the thyroid, breast, ovarian, (or testes) cervix, uterus, pancreas, and parathyroids or any others that may be deemed at a later date to be an outcome of radiation ablation of my thyroid gland.

14. You will accept full responsibility should my pancreas, pituitary, adrenals become incapacitated for the duration of my life.

15. Should there be, at a later date, any other symptoms, reactions, consequences of the use of I-131 on my body released from the Department of Energy’s currently sealed files, from Medical Associations, and from Independent Research that are not listed above, you will accept full responsibility in medical bills, free medical treatment and lost wages for the duration of my life.

16. Should I die because of an adverse reaction to the use of I-131, because of any future complications, because I became hypo and depressed and have taken my own life out of desperation, you will, willingly, without bias, pay numeration to my family, or the person I decree, a sum total of Ten million dollars ($10,000,000.00) within 5 working days of my demise.

17. Should you expire before the end of this contract, you will designate your estate to continue with full financial obligations through the duration of my life.

If you will agree to sign this contract, after reading and initialing each item in front of a notary or your attorney and return this signed agreement to me and my attorney, we will then sit down and discuss I-131 treatment. I will then be able to believe YOU that all is safe with this treatment, that you have no qualms treating me this way, and in the future, because you know that none of the above mentioned consequences is a possibility.  I can trust you to treat me safely, compassionately, with full medical attention.

However, should you not be inclined to sign this contract, I will fully understand, and we will both understand that I-131 treatment will not be discussed between you and I again, unless *I* choose to bring it up.

The weather today matches my mood.  It is cloudy with occasional rain showers; the perfect day to stay home and curl up with a good book.  I do plan on attending Street Havoc later this afternoon to watch my 10 year old grandson compete in the skateboard competition.  My husband just called to tell me that Grandson had just completed his first try at winning the grand prize for his age group and did very well.  In fact he did so well that he has been entered in the final competition later this afternoon.  According to my husband, the song “Heaven is a Half Pipe” certainly applies to our Grandson today.  Thanks to the bone pain, I missed his first performance shortly after 1:00 PM.  When I miss special events like this because of the bone pain and the inability to move properly it makes me very angry.  This should not be happening to a 57 year old woman.  I will however make it to the final competition later today even if it means struggling out of my car and crawling down the sidewalk.  The pain will not win. 
 
We had a long conversation yesterday with our son and daughter-in-law who live in Seattle. We have decided that I will fly to Seattle in the next few weeks to have some testing done.  Even though I will be flying the trip is a long one.  The next few weeks will be spent updating my passport and correlating all my lab results and doctor reports in my medical binders.  

Having finally made this decision has taken a big load off my shoulders.  It has become obvious that I will have to be an unresponsive corpse before any doctor in my province will take me seriously. Living with these infections; source unknown, the excruciating bone pain, the fevers and sweats, adrenaline rushes, low cortisol levels, blood pressure spikes, leg cramps and flank pain is no longer acceptable or doable. The cataracts in both eyes are now visible and apparently they are related to the high blood pressure spikes.  Reflecting on my symptoms the other day, I realized that my grandson is now 10 years old and he does not remember a time when his Nana was without problematic symptoms.  How sad.  It is becoming virtually impossible to pretend nothing is wrong and to put up a good front for this very special person in my life. 
 
We have approximately 5 weeks left for the potential of hot, summer temperatures.  As I have mentioned before this summer has gone by too quickly and has not been the kind of summer I had imagined it would be. On a positive note, I was able to purchase 6 pails of freshly picked strawberries and they are tucked away in my freezer waiting for the cold winter months.  I also purchased 10 containers of blueberries and they are keeping the strawberries company.  Next week I should be receiving my order of two large pails of Saskatoons and a crate of freshly picked raspberries.  My daughter is a genius at culinary pursuits and her strawberry, blueberry, Saskatoon and raspberry desserts are literally “to die for”.  We will be enjoying wonderful desserts at our Sunday evening dinners throughout the winter months.  My two crabapple trees which my husband planted about a month ago have new buds on them.  I can hardly wait until they produce fruit and we can add crabapple pies to the dessert menu. 
 

My daughter, son in law and grandson will be leaving on a week long vacation next Friday.  Grandson is very excited about spending two nights in a Theme room at the Fantasyland hotel in the West Edmonton Mall in Edmonton, Alberta, Canada.  I am sure he will be impressed with the wave pool and amusement park located in the mall.  I remember how much my kids enjoyed the times we spent at the hotel while we lived in Alberta.  Since Grandson and his parents will be going to the Royal Tyrrell Dinosaur Museum in Drumheller, Alberta, I made reservations for Grandson to participate in a day long dinosaur dig.  He will be joining the paleontologists out in the field and of course he hopes to find “the bone”.   
 
Two friends who I have met through my chat room and message board will be meeting me in Brandon, Manitoba on the weekend of August 20 to August 22nd.  Angie, Jani and I are looking forward to seeing each other in person. 
 
Well I am off to make my way to the skateboard competition.  Hope you all have a wonderful weekend.
 
August 7th 5:00 PM
 
Made it to Street Havoc and watched my grandson being awarded the prizes for winning second place in the 10-12 year old competition.  The competition was judged by age category and Grandson did really well considering he is only 10 years old. 

Beware of the Drama Queen. She is always on the internet trolling for her next victim!

Friday morning the town had their annual parade. The hockey teams participated so this meant that my grandson was involved.  After dropping my grandson off at the meeting place, I picked a choice location, parked my chair and spent an enjoyable hour watching the parade go by.   Luckily the rain held off until the parade was finished.

The infection under the skin on my face is finally clearing up.  I was worried for a few days when my eye became very swollen.  Thank goodness the swelling has gone down.  It would be nice to know what causes these infections.  Maybe a miracle will occur when I see No Name next week and he will be able to tell me why this happens.  I am not holding my breath.

The drama queens went on another rampage this week and this time they chose me as their target.  I really wonder who these pathetic creatures are.    I guess bullies are not only found in playgrounds at school; they are found on the internet as well.

The stress of the situation I have just described has certainly played havoc with my health this past week.  Sadly, the drama queens have given no thought to the impact of their wicked actions; or maybe they have and that is the whole purpose of their despicable behavior.

Enough bitching on my part.  Hope you all have a wonderful week.

It is Tuesday, June 27th and I realized today that it has been a month since I updated these diaries.  It has been a difficult month and it is hard to write a diary entry when each day is filled with excruciating pain.  When I began this diary on October 28th, 2001, I had no idea that I would still be writing about my health problems in July, 2004.  But who said life would be fair?

Since my daughter has been working full time at our business and it is summer vacation from school, grandson arrives every weekday morning at 8:30 AM and spends the day with me.  He wanted to earn some money this summer so at the beginning of July I made up a chart listing his chores and the amount he would be paid for each chore.  Each week I tabulate his total, he gets his “pay” and we post a new chart on the fridge for the coming week.

The three day holiday I was planning to take with my grandson at the beginning of July was cancelled.  I just felt too miserable to go.  We compromised and my grandson invited a friend to come over to play each day that first week in July.  It certainly taxes the imagination of a Nana to come up with activities to entertain a ten year old during a two month summer vacation from school.

Grandson and his parents spent the second week of July at the lake.  I found the house too quiet during this time.  I realized yet again how much that boy enriches my life.  Last week he attended a skateboard camp from 9:00 AM to 4:00 PM Tuesday to Friday.

My right hip has decided that it was not causing me enough grief so it has gone on a rampage.  For the last few weeks I have had to use my cane because that hip can no longer support my weight even though I have lost weight in the last few months.  Even though I thought it was not possible, the bone pain in my feet, wrist and hips has increased in the last month.

Yesterday at 1:00 PM I realized I was getting another infection on my face.  These infections always start in my outer ear and spread very rapidly.  By 2:00 PM yesterday the redness covered a quarter of the left side of my face.  By 4:00 PM it had spread to half my face and the lumps under the skin were noticeable.  Thankfully I had a refill available for antibiotics.  Yesterday evening I was running a temperature of 102.  I am anxiously waiting for the antibiotics to take effect.  Sure would be nice if someone could tell me why I get these vicious infections.  This is the fourth one in a year.

Hopefully you all are having a fabulous summer.