Not Over Till The Fat Lady Sings

This afternoon the secretary for the endocrinologist in the west called me to tell that my appointment has been cancelled.  Apparently February 18th is holiday in that city.  My appointment has been rescheduled for February 25th.  I have to admit I was disappointed.  However, I am just thankful that the secretary has made an appointment for Feb. 25th.  I cannot wait much longer.

Changing my airline ticket was not a piece of cake.  I ended up with a credit at the airline.  My flight on Feb. 25th is cheaper than my flight would have been on Feb. 18th.  Because I had purchased the ticket for Feb. 18th I could not get a refund on that ticket.  Instead the Feb. 18th ticket was cancelled and the money applied to the Feb. 25th ticket with the difference being credited to me instead of refunded.

My fatigue and muscle weakness seems to be deteriorating on a weekly basis now.  I wonder how tired a person can become before they are too tired to move.  Some mornings I really believe that I am close to that point.  The pain in my Achilles tendons is much worse again.  I find it hard to believe that two general practitioners, three endocrinologists, 3 residents, and an intern cannot figure out what is happening with these tendons.  They all concur that I have what they call a mass on each tendon.  They concur that the mass is painful to touch.  You see in order to look at the lumps, they all have grabbed my legs exactly where these lumps are situated and nearly got my knee in their faces.  I guess because I reacted instinctively they realized that these lumps actually hurt.  My word, of course, was never enough to convince them.  But a knee coming within inches of their face was a strong motivator to believe me!

There are many days now that I feel totally useless.  I find it difficult to tidy up my house, difficult to go shopping and sometimes just plain difficult to get through the day.  Dare I hope that by this summer I will have the answers I need to start the recovery process?  Will I ever wake up in the morning and feel like a human being?  Will the pain ever be gone?

Calling the Sleep Clinic was the first thing on my agenda this morning.  I was pleasantly surprised.  The lady I talked to was very helpful and accommodating.  In fact she faxed Bighead’s 5 page report to me while I was talking to her!

I must admit that Bighead was very thorough and wrote a very detailed report.  I have to give the man credit where credit is due.

Here are his opinions in brief:

Restless limb syndrome:  He says it remains unclear whether this is related to my thyroid abnormalities or any other metabolic derangement.  He also states the RLS timing is slightly unusual in peaking around 01:30-02:30 rather than in the evening however the other features are typical. The “jolting awake” episodes do not appear to be respiratory.  They are however accompanied by generalized restlessness and inability to lie still, however, without crawling sensations in the legs.  These “jolts” do not suggest events from any respiratory disorder or other clear sleep disorder. He states that I have mild REM predominant sleep disordered breathing. However, I apparently do not have clinical features suggesting right-sided heart failure or pulmonary hypertension at this time.  He is not optimistic that therapy of my REM predominant hypo apneas will alter my symptoms much.  He does say that I have sufficient events to merit a trial of therapy. He states that I have severe alpha intrusion during sleep which is a non specific marker but is commonly associated with chronic pain and anxiety symptoms, non-restorative sleep and fatigue.  He states that this is usually resistant to therapy.   Because of recent episode of hypokalemia (low potassium) he feels that I need to be carefully assessed to ensure that I don’t have hyperaldosteronism.  He also states that because I was hypokaemic I am at a markedly increased risk of recurrent hypokalemia on the currant furosemide (Lasix) without potassium supplement.

He states that with my bone pain and history of hyperthyroidism I am at increased risk of osteoporosis.  He says that it would be prudent to have bone density screening done. He mentioned that I have myxedema skin changes on the dorsum of both hands.  He then suggested that I have the following blood work done: Hemoglobin, Ferritin, Ca, Mg, Cr, TSH, Folate and a WBC.

He did mention that he did not notice peripheral edema which I find rather strange.  I can push down on the front of my legs at any time and it will leave an indent of my finger for quite some time.  All in all I think Bighead was very observant and came to many right conclusions.  Now if only the endocrinologist I am going to see in the west can put this all together.

Woke up this morning at 6:30 AM and repeated the same routine as yesterday.  I saw Bighead again at 7:00 AM.  This morning he told me that he had counted the incidents of sleep apnea from the night before.  Supposedly I stopped breathing a minimum of 20 times and a maximum of 40 times during the dream stage of sleep.  Bighead will be making the arrangements for me to get a CPAP machine.  I guess it doesn’t hurt to give said machine a try.  With our very efficient medical system, it will take at least two months before one becomes available for me.  However, Bighead did tell me that I had other more pressing problems.  He mentioned that he thought I had an endocrine problem and maybe an adrenal problem and that he would be writing Squirt to tell him.  Bighead then told me that he was very concerned that I might be low on potassium.  He gave me a requisition to take to a lab as soon as I got back home.   I asked him if he would release the sleep clinic records to me if I found my own doctor.  His reply was, “Mrs.—-, it is not that easy to find another doctor.”  I told him that I had already found two; one out west and one in the US.  Both were willingly to see me.  He was silent for a moment and then replied, “By all means; just contact my office and your records will be sent to you.”  I thanked him and left.   It was just before 8:00 AM when I got back to the hotel.  I decided to have a quick breakfast.  After breakfast I was so tired I decided to crawl under the covers and go to sleep for a while.  I slept until noon.  At 1:00 PM I checked out of the hotel and went to the airport to wait for my 5:30 PM flight home.  I finished reading “Every Breath You Take” about ten minutes before I boarded the flight to go home.

Morning came much too early today. We were up at 5:30 AM and left for the airport in the city at 6:30 AM. Today is the day I flew to the city in the east to spend two nights at the Sleep Clinic. Certainly not the location I would have picked for my winter holiday! I got to the airport at 7:30 AM, checked in and got through security without problems. My poor cane got a going over. Guess you cannot be too careful these days. My flight left at 8:55 AM and took an hour. The sky was mainly overcast but did manage to see some of the wildness areas beneath us. What beautiful country even from the air. The plane landed at 11:10 AM; ten minutes late. (There is an hour time difference).

My first appointment at the Sleep Clinic was at 11:30 AM. I arrived late. However, I did not have to wait to see the doctor. My first consultation with this man was actually quite hilarious. If I don’t say it was hilarious I would have to say it was one of the most insulting consultations I have had to date. He addressed me as Mrs. which is fine. Oh yes from now on I will refer to this doctor at the Sleep Clinic as Bighead. Your imaginations can fill in the rest. Bighead asked me if I could tell him in my own words why I had wanted to come to the sleep clinic. I told Bighead that I really had not wanted to come; that this was Squirt’s idea. Bighead then asked sarcastically, “Well then in your own words, Mrs.—-, could you tell me why Squirt wanted you to come to the sleep clinic. I told him that Squirt had told me at my last appointment that he, Squirt, was confident that I would be diagnosed with sleep apnea and then all my problems would be solved. Wrong answer! Bighead sat even straighter. The skin on his scalp actually stretched a bit tighter. He informed me that no medical doctor would say such a thing. He then said, Mrs.—–, would you like me to pick up the phone and call Squirt and ask him if he really said that?” I answered with, “By all means give him a call!” Anyone get the feeling that I was back in Kindergarten and not at a sleep clinic? What happened next actually shocked me. I was so angry I burst into tears! Talk about embarrassed! Never before have I burst into tears in a doctors office. I swore never to give doctors the benefit of seeing me emotionally distraught. I looked at Bighead and said, “This is one of those times in my life when I am so angry that I will never forget what transpired during this appointment” Bighead has no idea how close I came to walking back out that door and taking the next flight home. I may have a poor quality of life but I am not on this earth to be the butt of doctors’ insults.

I guess that Bighead decided that he had insulted me enough for one day and began to ask me about my symptoms. He examined me and then told me that he felt that I had other problems besides sleep apnea. I guess I have to give this arrogant man credit for that. Bghead told me that he felt that I might have an adrenal problem. Upon hearing that, I nearly fell off of the examining table. I decided that this man might just know what he was doing and that I would have to shut up and put up with his arrogance and insults.

Since I was scheduled to arrive at the Sleep Clinic at 10:30 that evening, I went to the hotel and read for the rest of the afternoon and evening. I read “Drowning Ruth” by Christina Schwarz. At 9:30 PM my darling grandson called me to tell me how much he missed me and to tell me he loved me. What a sweetheart! He sure made my day!

My husband’s call that evening was to tell me that I had a call from No Name’s office today. The secretary had called to tell me that I have an appointment with the endocrinologist in the city in the west for February 18th and that I should plan on staying for 4 days in order to have testing done. Words could not express my joy on hearing this. Finally an appointment with an endocrinologist of my choice! I have almost two weeks to hope and pray that this endocrinologist will be able to help me.

I arrived at the Sleep Clinic at 10:15 PM and was promptly hooked up to what seemed like hundreds of electrodes and wires. I had electrodes all over my head, my face, my legs and my chest. Each of the patients at the clinic got their own bedroom with comfortable beds. We also got our own bathrooms. I was actually quite impressed. I read for a while and managed to fall asleep. I was jolted awake several times during the night by what I can only describe as adrenaline rushes. Since I could not get out of bed and walk around when they happened, I distracted myself by reading.

Wonder what this week will bring?  I think the last few weeks have brought quite enough for a while.  I called Squirt’s office this afternoon to see if his royal highness had written and faxed the referral letter to the new endocrinologist in the city west of us.  Squirt’s secretary told me that she had reminded him about the letter on Monday but he had told her he needed to think about it some more.  I cannot believe I was stupid enough to think that he might actually come through for me just this once!   He has known about this referral since Wednesday of last week!  I faxed him and asked him to write a simple referral without prejudicing this new endocrinologist.  How long does it take to write a simple letter of referral?

I decided at noon that I would wait no longer.  I called No Name at the town clinic and asked his receptionist if I could see No Name some time today. Luck was finally with me and I got an appointment at 5:45 PM.  No Name was his usual friendly self.   When I told him that I had the opportunity to see this endocrinologist in a city west of us and that I needed a referral letter from my doctor, he said that he would be happy to write it.  And write it he did.  He actually used a letter he already had on his computer.  We went over that letter; I pointed out a few errors; he corrected them; and the letter was faxed.  You cannot imagine how relieved I was.  You all know what Squirt can do with his letter of referral if and when he ever writes it!

No Name told me that he was disappointed that the endocrinologists and doctor of internal medicine that I had seen here in my province were not capable of putting my symptoms together and coming up with a diagnosis. I mentioned to No Name that I had had a potassium crisis at the beginning of January.  I also told him that I was now on Lasix without a potassium supplement.  No Name wrote out a requisition for me to have my potassium levels checked every two weeks.  Thank goodness someone else besides me is worried about this.

Now I will be patient or at least try to be patient until I hear back from the endocrinologist in the west.  Hopefully it will be soon!  I have to start preparing for my trip to the Sleep Clinic in the city in the east.  Heaven help me if I have even the slightest bit of sleep apnea.  If Squirt hears just a whisper of the words sleep apnea he will probably do the dance of joy around his office.  (Remember he told me at my last visit that he was confident that I would be diagnosed with sleep apnea and ALL my problems would be solved.)  Mind you, with that broom stick shoved you know where, I am not sure that Squirt would be capable of doing a dance of any kind.

We have had such a lovely winter until now. It was so cold today that the wind just took your breath away. My daughter and I almost froze to death just walking from the parking lot to the hospital. I hope it warms up soon!

Today I had the Methacoline Challenge. My lungs did not react to the medication until the last dose was given. The technician told me that people with asthma usually have a reaction when the second dose is given. By the time I reacted I had had a least 6 doses. However, I realized then why I was being given this test. Squirt and Dingaling decided that maybe I had asthma. The only time I have ever been short of breath or had a hard time breathing was between January 15th and January 18th. It was during this time that I was off the diuretic and retaining fluid so badly. Now this sounds like a perfectly reasonable explanation to be short of breath.

The technician told me that the results would be sent to Dingaling since he ordered the breathing tests. This means I may never get the results.

This morning before I left for the city, I faxed Squirt the name and number of the out of province endocrinologist. I hope I have done the right thing. I trust the man about as far as I can throw him. His secretary claims he will be working on the referral letter over the weekend. I will not hold my breath.

I was told today that my airfare to the Sleep Clinic will be paid for by my health care provider. I still feel very leery about this trip but I am sure I will survive – I always do.

Today is Friday and I am so happy this week is over. How awful when a person actually wishes their life away, day by day and week by week. Our grandson is coming tonight for his Friday night sleepover. Papa and Grandson have picked out a movie to watch. I have promised Grandson I would help him chat. He hears my friends come on line and he is in the den before I realize that anyone has knocked. Tonight we will chat with my son/Grandson’s uncle. Should be fun.

We have two hockey games to go to this weekend. One game is on Saturday afternoon and the other one late Sunday afternoon. Our grandson’s team has done really well winning the last 4 games they have played. Maybe I will sneak my cow bell to the arena! Great grandpa would get a kick out of that!

It is bitterly cold today with a wind chill of -30 C. My daughter and I drove into the city for my appointment with Squirt. These appointments are becoming much too difficult for me. I find myself filled with such dread and apprehension and I do not need this extra stress in my life.

Squirt informed me that he had not yet received a summary letter or test results from Dingaling. I have no idea what Dingaling is doing with the results of the tests that he ordered. Apparently he feels no need to send copies to Squirt’s office. I gather there is a hierarchy involved. Since Dingaling has more letters behind his name, Squirt just sits and waits until the appropriate paper work is forwarded to him. Dingaling is the consultant who was asked to give another opinion, so I suppose he sees no need to get in touch with me directly. I guess informing a patient of her test results is not part of Dingaling’s job description. It is obvious that Dingaling has no intention of returning my husband’s phone call of last week Thursday.

Squirt has made up his mind that I have some kind of breathing problem and this breathing problem is the cause of all my symptoms. I guess I should be thankful that he now actually acknowledges that I have symptoms. During the entire appointment he repeatedly asked me if I had problems breathing at night. My answer was no. I told him that Dingaling had asked my husband the same question and my husband had told Dingaling that my breathing was normal at night. In fact, Monday night after the appointment with Dingaling, my dear husband sat up for an hour listening to me breath.

Squirt has made an appointment for me to go to a Sleep Clinic on February 4th. I have to fly to another province and sleep at the Sleep Clinic for two nights. I fly into this city at 8:55 AM on Monday morning and have an appointment with the clinic doctor at 11:30 AM. After the appointment I go to a hotel and wait until 10:30 PM at which time I return to the clinic to sleep for the night. I wake up Tuesday morning at 6:30 AM and go back to the hotel for the day. I return to the Sleep Clinic again on Tuesday night at 10:30 PM for a second night of sleep. Finally, on Wednesday afternoon I get to fly home again.

Squirt told me during my appointment that he was convinced that I would be cured after I had been to the Sleep Clinic. When I asked him what I would be cured of his answer was, “Sleep Apnea.” Funny thing, I have never had sleep apnea in my life. I am certainly not looking forward to Monday, Tuesday and Wednesday. In fact I have a very bad feeling about this trip.

I told Squirt that I would go to the Sleep Clinic on the condition that he write a letter of referral to the doctor Anne Marie recommended. He told me that he would have to spend some time putting together all the information from the endocrinologists I had seen. I told him this was not necessary. Since I had found this doctor on my own with Anne Marie’s help, I was entitled to see him with a clean slate. I told Squirt that I did not need this doctor prejudiced before I even got to see him. I guess I will soon find out if Squirt actually listened to me.

We discussed a few other things but the discussion was so meaningless I have forgotten what we talked about. I left with a requisition for blood work to check my potassium levels.

Right after the appointment with Squirt I was scheduled to have another EKG at one of the city hospitals. Squirt made the appointment for this EKG at the hospital were he has admitting privilages. Since I had an EKG on Monday, January 14 I have no idea why I needed the second one. I get a strong feeling from Squirt that he is trying to disprove the diagnosis of right sided heart failure.

When I got home I was absolutely and completely exhausted. These appointments are just too annoying and frustrating. I think the time has come to make some changes but I do not know how I am going to go about making these changes. Squirt gives me no sense of security. He is bound and determined to prove that I do not have an endocrine disorder. Why I put myself through this torment is beyond me. Trouble is that too often now I am just too tired to fight. Is it not a sad state of affairs when we have to fight for proper medical care? My country prides itself on its Health Care System. Just take if from me – it leaves much to be desired.