Note to Readers: I use the computer through NaturallySpeaking, voice recognition software.  It's a wonderful tool.  But occasionally it "Miss understands" me. I catch most of the errors, but you may find a few things that are off a bit, some will make you chuckle.

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Enjoy.  And please think about sharing your stories with this website.

August 2000

Aug. 12, 2000

Hooray!  Today I installed a trial version of Microsoft FrontPage.  Now I can start writing my journal.  And when I finish my Web Site I can share it with the FMily.

I feel caught in a box.  I spend my time going to work (full-time), resting in the evenings, recovering on the weekends, and going back to work the next week.  Fortunately, I have a good and challenging job (more on that later).  But it doesn't satisfy all my needs.  It doesn't satisfy my needs for play and recreation or for close intimate friends and relationships.

In addition, I injure easily and heal slowly.  Right now I'm healing a sprained ankle, tendonitis in my left knee, and both wrists and elbows hurt.

I talked with my doctor, an excellent rehabilitation doctor at Virginia Mason in Seattle, and she said a program of slowly progressing aerobic exercise and stretches could make a big difference both in healing the injuries and increasing my energy.  But right now I don't have the energy to do this.  (I can exercise without aggravating the general fibromyalgia symptoms.  Also, the doctor and physical therapist at Virginia Mason are experts at exercise programs for fibromyalgia.)

That is why I feel like I'm in a box.

This morning I lay in bed thinking.  It's Sunday morning and I'm still tired.  After I play with FrontPage, I'm going to go back to bed and nap.  Then I should feel better.  It worked yesterday.

Back to the box.  One good thing about my job is that I have flex time.  I'm thinking about asking for 1.5-2 hour lunches everyday and staying later to complete might 8 hours of work.  When I have lunch with my friend I will then workout for an hour, making a 2 hour lunch hour.  When I don't have lunch with my friend, I will work out for 1.5 hours.  This will give me the time to work up from 15 to 30 minutes on the exercise bike and time to take a shower, which I will certainly need as I increase my time on the exercise bike.

I will focus on my legs and stretching my arms.  There are some exercises I could only do at home.  And I can tell you, when I get home I don't want to do anything more than heat up my dinner and read or watch TV.  I want at least 2 hours of time to myself each evening.  But with this plan, I'll only need to do 1 exercise at home which takes about 10 minutes.  It's a really important stretch for my knees and I think I can work 1 exercise into my evening.

Signing off for today.  Marie

Aug. 21, 2000

It is Monday morning and time for work again.  I felt lousy all weekend -- tired, anxious, angry, and sad.  On Saturday, I wanted to sort through all of the papers on my 2 desks.  But my arms aren't up to it.  I got through 1 magazine size holder box (out of 6), and my elbows started to hurt.  I took a break and then decided to do more general straightening up.  I did a lot of stuff on the computer because I talk to the computer and it doesn't use my arms very much.  Sunday I continued to feel both anxious and low energy.  It is a strange combination.  I was mad I couldn't do what I wanted to do (straighten up the papers) so I would not do anything else.  Even some things that I knew would be good, some things to take care myself.

And I was lonely this weekend too.  I need to make more friends but it's hard to do when energy level is low.

Well, I better finish getting ready to go to work.

Marie

After Work

I had a lousy day.  I have a horrible headache.  There is pain and pressure on my cheeks, on my forehead, at the back of my neck, and on my shoulders.  I just want to put my head into a bucket of water and make all muscles relax and all of the pain go away.  I don't have much energy.  It was hard to focus at work.  And I may have a little sore throat.  I hurt inside.  It's hard to get motivated to do things.

Is this depression?  Another sinus infection?  That would be really lousy, I just finished antibiotics last week.  A cold?  Fibromyalgia?

I am angry.  Angry about the limitations of this disability and how hard I have to work just to keep going to maintain the normal life.  And angry about how difficult it is to maintain a social life. My social contacts at work are great, but I need more than friends I see a work. I need a group of friends outside of work that I can do fun things with and share my stories with and feel loved.

As often as feeling lousy happens, I hate it every time.  I need to go to work to support myself.  But it's not much fun when I feel this way.  And it has impacts on my relationship with others.  I started arguing with my boss's boss today.  Fortunately, I saw what I was doing and shut up.  I didn't listen to a friend the way I would like to after she lost her Grandma. And I worried about each of these events.  Fortunately, I could talk with my friend and I found out that I had not offended her as I had feared.

At least I made it home in time to do 3 loads of wash that I just did not feel like doing this weekend.  I'm almost out of socks and underwear and am completely out of clean blouses to wear to work.  

August 31, 2000

This morning on Good Morning America they interviewed a young girl, perhaps nine years old, who had received a stem cell transplant for a severe case of rheumatoid arthritis.  It cured her of rheumatoid arthritis :-). The interviewer asked her what it was like before rheumatoid arthritis was cured. They asked her what it was like to lay on the couch while her brothers and sisters were outside playing and having fun.  She said it was sad.  Her face looked sad.  The adults acknowledged her feelings, implicitly agreeing that that is no way to live.  (I have never seen such acknowledgement on the media.  I certainly don't see it or feel it around people who have chronic illness.)  I almost started to cry.  That's how I feel with fibromyalgia -- I'm sidelined so much of the time and miss out on a lot of fun.

I'd like to share something I wrote about many of the things I cannot do.

Imagine a World

Imagine a world where where

Imagine this world. Imagine living in this world every day of your life for the past 12 years and for the next forty years or more. I am still young. This is my world. This is my world living with fibromyalgia.

Sept. 3, 2000

The topic for today is chronic sinus infections -- sinusitis. I have had this problem for 10 years, since May of 1990.  I get a sinus infection every month or two.  I had been fighting a sinus infection for the last 2 or three weeks. I had a horrible headache.  It finally went away and I thought maybe, just maybe, I don't have a sinus infection. But Friday, it was clear I had a sinus infection.  I went to the doctors and got antibiotics and took Friday off from work.  That gives me four days to rest.  Hopefully I can go back to work at least 4 hours on Tuesday.

I am fed up with this.  It interferes with my energy level, my social life, and work.  For example, it's Labor Day weekend and I am home with this sinus infection.  I had plans to go on a ferry ride tomorrow and go out to dinner.  But I'm home.  Resting and recovering from the sinus infection.  This happens more than I like to think about it.  

Also, I am pretty much out of sick leave and have only 2 days of vacation left.  This sinus infection is likely to eat up 1 day of vacation.  If I have 2 more very soon, I will be completely out of sick leave and vacation hours.  It will be very hard to build up hours again (I get sick leave and vacation hours with each paycheck).  And they do not like it at work if the hours worked plus sick leave plus vacation is less than 40 hours a week.  Another worry.

In some ways the sinus infections are more debilitating than the fibromyalgia.  They definitely sap my energy.  I don't know what my energy level would be like without the sinus infections.  It would be better.  Not normal, but better.  

Below are more feelings and details about my sinus infections

Every time I get a sinus infection I have to go to my doctor's office. They moved their office and it is no longer on a convenient bus line for me.  It's also a bit too far for me to drive.  So often I have to take a cab.  It costs $10 from home and $20 from work one way.  I go to this Dr. because he is a good Dr. and because I can get in to see him the same day I call when I get a sinus infection. After the doctor examines me, he usually agrees that I have a sinus infection and prescribes antibiotics.

I hate going to the Dr. for sinus infections.  It feels so futile because I know the cure is only temporary.  Also, when I start on antibiotics I have to reduce my work hours.  If I don't, the antibiotics don't work and I don't get well.  I've tried it. Sometimes it works to work part-time while I'm getting better, usually for about 5 days. Sometimes I need to stay home from work for couple of days and then return to work part-time.  I prefer to go to the doctors on Friday so that I can rest up on the weekend.  But I still need to work part-time when I return to work the following week.

As with any job, I have a limited number of sick leave hours.  Once I exhaust my sick leave hours, then I have to use my vacation hours.  I now earn more than 3 weeks of vacation every year.  However, I use up 2 weeks of vacation being sick.  So, over the past 10 years, I have had no vacation lasting more than one week.  And I take only 1 vacation per year.  I need a break.  I need a break of at least 1 month.  I find myself wishing I were a teacher so I would have summers off (but teachers don't make enough money).  So another reason I hate sinus infections is that every time I miss work due to a sinus infection I know that I'm cutting into future vacations.

I have tried a lot of things.  In 1992 I had sinus surgery.  It made things worse.  I had more sinus infections after it than before it.  Last year I went to an allergist because I thought I had allergies and wanted allergy shots.  However, I was told that I do not have conventional allergies.  Instead, I have non-allergic rhinitis.  Inside my nose is definitely swollen.  But, they don't have good treatments.  As usual. I was advised to take pseudafed twice a day (30 mg, I'm sensitive to it).  I do that.  In addition, I have been irrigating my sinuses with distilled water (it's very important to use distilled water, tap water has too many germs in it), salt, and baking soda twice a day for 10 years. I used to use a bulb (like is used to clean out your ears).  But now use a water pick and a grossan tip.  I hate irrigating.  It is boring and messy and no fun.  Sometimes I put off going to bed because I don't want to irrigate.  I just don't like doing it earlier in the evening. I also procrastinate irrigating on weekend mornings like today.

Yesterday I spent a few hours looking up sinus infections on the Internet.  I found a few things.  There is some speculation that sinus infections could be related to GERD (the thing that causes heartburn). I have GERD, but don't have any symptoms (it was shown on a test I took).  [I talked with my doctor about GERD and he said that I would need to have strong symptoms in order for it to be a cause of my sinusitis]  Also, I read about laser surgery that could shrink the tissues in my nose so everything would drain better.  I would want to learn a lot more about that before I proceed with that option. One doctor who wrote advised finding a doctor that specializes in sinusitis.  I wish I could find such a doctor in Seattle.  I need to start looking.

As I said earlier, I am sick of this.  I want to find a solution. Any ideas out there?  Any other stories to share?

Marie

October 2000

October 22, 2000

A lot has happened since my last entry.  My last entry in September talk about sinus infections and how frustrating they are.  I'm still working on recovering from that sinus infections and got rather blow on Friday when my doctor suggested that I can only work six hours a day rather than eight hours a day.  I'll talk about this more at the end of this entry.  First I want to summarize the past month.

As I have the working on this Web page, I have been reviewing other Web pages on fibromyalgia.  I ran across the page www.guaidoc.com describing Dr. St. Amand's approach to treating fibromyalgia.  I heard him speak in the early 1990s and was interested in his approach but never fully followed it.  He has a book out now.  In addition, the Web page contains a listing of physicians that treat patients with Dr. St. Amand's protocol.  One of the physicians listed was Dr. Paul Brown in the greater Seattle area.  I had also for him speak and have a great deal of respect for him.  So I made an appointment and went to see him toward the end of September.  At that point I was very hopeful that I could make significant progress by following Dr. St. Amand's protocol with Dr. Brown.  What I learned was the Dr. Brown has only 5 of his patients on the protocol and that it is not a large part of his practice, as I assumed it was.  

I had decided to go on the protocol anyway.  I have already been taking Humibid every day for at least nine years for the sinus infections.  The main other things I needed to do was follow the hypoglycemic diet and avoid this chemical that starts with the S that is in a lot of cosmetics and other products used on scan.  I am not perfect about following the hypoglycemic diet, but I do pretty well.  I reviewed all products are used and made the changes needed.  I did this in mid-September.  What is supposed to happen after starting the protocol is that the pain level markedly increases.  It has not for me.  This suggests to me that I have reversed some of the fibromyalgia by taking Humibid over the past nine years.  My main problem of late is fatigue and I haven't sleeping 12 hours a night.  Maybe this is due to the protocol, maybe this is due to recovering from the sinus infections... I just don't know at this point.

Back to my visit with Dr. Brown.  I was very pleased with the visit.  Dr. Brown is very thorough.  He confirmed my fibromyalgia diagnosis and asked me lots of questions.  He suggested exploring thyroid function and sent me to the blood lab for numerous blood tests.  Thyroid function can be hard to diagnose, I understand.  The standard tests do not always pickup problems.  What I got home I looked again at a book I purchased a while ago called From Fatigued to Fantastic by Jacob Teitelbaum, MD.  As I recall, the book talked about the relationship between thyroid and immune system.  So maybe, just maybe, if I'm having a problem with my thyroid it is impacting my immune system and making it harder to recover from sinus infections and treating it will help.  Maybe.  So now I wait.  The soonest I could get into the endocrinologist is early November.  He will get me the test results and do whatever and then I'll go back to Dr. Brown.

I am curious and hopeful.

Now to working 6 hours a day.
First, some history
1.  Sept. 1: started antibiotics, cut back work hours then returned to 8 hours
2.  Sept. 16: relapse, changed antibiotics, cut back work hours
3.  Week of September 25: tried to work full-time, by Friday very very tired
4.  Oct. 1: relapse, took 3 days off of work that week
5.  Oct. 14: relapse, changed antibiotics over the weekend, return to work 4-6 hours the following Monday
6.  October 19: felt relapse coming on, went home early and took a nap, nipped it the bud
7.  Oct. 20: visited my doctor and he said I should not work more than six hours.  Did not go to work.

Basically the pattern is that if I work more than six hours or even if I work six hours and try to do something beyond that I get too worn out and I have relapse.  I go to bed before 9 PM and wake up around 9 AM.  I get to work around 10 or 11 AM and work until 5 PM or until I get tired.  What I get home I need to rest or take a nap.  Right now going to the store, being on my computer for more than quick things, doing household chores, is too much.  So those things are saved for the weekend.  But even on the weekend I need to sleep 12 hours, take a nap, and keep my focused activities to no more than 6 hours. The rest of the time I can watch TV or read or listen to books on tape.  Right now emotional TV shows are hard for me to deal with because my emotions are so close to the surface.  

On one hand working 6 hours is a relief because I just can't work eight hours right now.  On the other hand, I feel like an old person.  I feel like things are slipping away from me.  Working 6 hours and still not having the energy to do much else leaves me socially isolated.  And I hate that.  I have this idea for an organization called the "quiet club."  It would be for people who have less than the normal amount of energy due to illness or disability.  We would meet during the afternoons on the weekend and you quiet things like play games, have conversations, dialogs, potlucks, etc. It's not that we would never make noise or get excited, but we would do activities that fit our energy level.

Until recently, I have not viewed myself as having a fatigue problem.  I know I had less than the normal amount of energy and regularly told people that.  But I don't feel tired all of the time (unless I'm having a relapse).  Once I get twelve hours sleep, I have good hours during the daytime.  That is when people see me.  Then in the evenings I have less energy.  And when I work eight hours a day, five days a week I get tired by Friday and spend a week and recovering.  I wake up Saturday feeling lousy.  Of course, when I work eight hours a day I don't sleep 12 hours at night.  It's more like 9,which isn't enough apparently.

This is also a bit scary.  Cutting back from eight hours to six hours will, eventually, mean less take home pay each month.  At first, I will have donated sick leave.  But that won't last forever.  Can I live on less money?  What will I have to give up?  And what if I cannot maintain six hours?  That will be really hard to live on.  I'm pretty sure my work will work with me to find a solution.  And I keep telling myself to take it one day, one week, one month at a time and not to look further into the future.  I don't know what the future will bring.  I don't know what Dr. Brown will find.  But I can't fool myself either.  I have had this problem of getting tired when working full-time since the early 1990s and I had the problem of getting sinus infections since that time as well.  That is not changing.  My body is tired.  I need to address this issue.  At the same time, it hurts.

Contact Marie at: [email protected]