Speed Bump #11

It's been awhile since I have sat down to post but many thoughts are making their way from brain to fingers.  Since my last post I have had another non-ALS related health problem.  Since February when clots were discovered iin both lungs, I have been taking medication but unable to stabilize things.  Around the end of April I began to notice bruising and then re-bruising on my outer right thigh.  Since my right leg and foot was the stronger of the two I would always lead with that foot to turn around to sit.  Well I started having pain when I would hit the same spot when trying to sit on my walker.  However, Dennis never saw a bruise.  Then I noticed my leg from the knee up was beginning to swell up.  But I thought it'll go away.  Everyone told me not to worry, etc.  A small voice in my head kept saying I should be cautious due to the blood thinner medicine. 

Finally on Saturday, April 30th after Dennis and I had gone to a local garden center in the handicapped van, I told him I was in so much pain.  He decided to take me to the ER.  Once we were there and equipped with 4 bracelets (the one I loved was the "FALL ALERT" bracelet), a sonogram was done on my right leg which showed no clot or evidence of a clot.  Blood test did reveal my "PT INR" count was too high.  It was determined that my bruises were "bleeding out" into my leg.  I was given pain medicine and sent home.

I stayed home Monday in great pain and saw my doctor on Tuesday.  I was told no work for the week and reaccess for next week.  It would take my body time to re-absorb the red cells into my body.  Dennis stayed home Monday - Wednesday and went into school half days on Thursday and Friday.  I was still in pain AND unable to stand on this leg which meant that Dennis would have to lift me all the time.

Lifting me involves me putting my arms around Dennis' neck and trusting him to keep me from falling.  Another of life's lessons.  That is scary trust!  Besides that I had to stay quiet since my mouth was so near to his ear!!  I can't even imagine that trust/faith to walk on water when told to step out of a boat.  I can't say I've totally learned that lesson but I am working on it.

To be continued.

Speed Bump #10

As I stated in #9, my youngest broke his nose.  Today in the middle of spring break he had surgery to fix his nose.  Dennis and I took him even though it was thought I should stay home.  I couldn't do that.  He is my baby and I knew he was scared, especially to go under anesthesia.  So we went.  Surgery was at 11:30 and he checked in at 9:30.  By 1:00 I was done with sitting in the wheelchair.  My personal seat was sore.  Dennis wanted to take me home but I needed to see Matthew.  I finally did and while he was still recovering enough to come home, I was taken home.

Hubby and I are not communicating well these days.  I talk too much, ask too many questions.  He wants quiet morning coffee, quiet mid-mornings, noon, afternoons and evenings.  I do know he is under a lot of stress and everything is dumped on his shoulders.  I try and try to stay quiet or ask less.  But who can I talk to?  I asked my eldest about it, about why I get so anxious.  Her response? "Because you have very little, if any, control anymore."  I read about this man who was paralyzed and Home Improvements (tv show) built him a new house which gave him back much of his independence.  One quote he said about the hardest part of his life was "waiting for others to respond to his requests".  Bingo!  In a nutshell.

Speed Bump #9

I never thought I was a weak person but I've come to realize that most of mt life I have been scared.  I've been scared of failing, of succeeding, of rejection, of acceptance.  But I've also come to realize that most of us are the same way.  I've always been afraid of flying and because of that fear I've gone almost nowhere and seen very little.  I guess the bravest thing I've ever done was to be a parent.  Talk about working on something 24/7 and waiting years for the outcome!  In some cases I imagine we never see the outcome.  It could be generations away.  All I know is my eldest is struggling, we still hold our breath on our middle child, and our youngest broke his nose!  But isn't that life?

I haven't been putting a lot of effort into this blog lately.  I felt that no one was reading it.  Just yesterday, however, a colleague told me she checks in at least once a week.  There was the encouragement I was asking for but at the same time I realize that I should be writing for ME and not for others.  The last couple of days I felt I was lagging farther behind at work.  Not putting all my effort in or unable to do so.  But once again I am my own worst critic.  I was reminded of this when I was off one day the other week and my assistant said how behavior in our most hormone driven 8th grade class was totally off without my presence.  And then my dean reminded me that "I was his hero."  So I am learning at this late stage of my life to let go, accept things as they are and to always give a little bit of yourself along the way.  I won't always succeed but I'll keep trying.

Speed Bump #8

It's been almost a month since my last post.  Much has happened and much has stayed the same.  I went for my 3 month checkup at the beginning of the month.  My "numbers" are the same and my breathing is actually better than in December.  While I have lost another 10 pounds, the doctors deem me "stable".  Never has that word been connected with me!  But I'll take it.

I was back at the mall with son and hubby one Saturday.  Again, I was wishing I could walk.  We got into the elevator to go to the food court and I found myself with a mom, her mom, twin girls and a stroller.  I looked in the stroller expecting to see an infant.  Well, I did but one with multiple birth defects.  Right then and there I felt God putting me in my place for having a "poor, pitiful me" attitude.  I need to be thankful for each day I have and not keep looking over my shoulder at what has been.

The weather is getting nice and last Sunday I took my maiden voyage in the powerchair on a stroll with Dennis and our dog, Stormy.  Why should I care that people see me?  I should be thankful I can still feel the sun on my arms.  So what if my feet are freezing cold!  I must embrace each day as a gift.

Speed Bump #7

Last Wednesday I went to the ER via an ambulance.  I had gone to work as usual but as the day went on I kept coughing this tiny, tight, painful cough.  I've had this cough off and on for quite a while now.  When I got home Dennis said I didn't look great (thanks dear!).  I rested in the Lazy Boy and tried to eat dinner but the cough kept occuring.  After calling my OT and her advising Dennis to call 911 since I could have an infection and due to the ALS I was already at reduced lung capacity.  Well guess what?  It was discovered that I have blood clots in both lungs.  While sitting around the ER waiting for decisions to be made, I had an "A-Ha" moment.  My last few blood tests had elivated red cell counts (more red cells for more oxygen) as well as breathing problems/breathi-ness (debris in the lungs), AND being tired (stress on heart).  Everything in the previous parentheses from the doctors.

So while I was NOT happy being in the ER, it seems some good may come out of the visit.  I went home Thursday afternoon, armed with lots of instructions and prescriptions.  I am on 2 blood thinners, one to kick start the other.  One is a shot I have to take twice a day IN THE STOMACH!  What fun!!  At least I only have to take it until the Coumadin levels get to where the doctor wants it.  So now I get to endure comments from Dennis about how it's a good thing there is enough stomach to pinch.  But don't worry.  Payback will be sweet.

Time Out

I did not call this post "Speed Bump #_" because it is not one.  The husband of a former colleague of mine at another school was diagnosed with ALS two summers ago.  This was about the time I entered into the "Is it ALS or is it Lyme" Sweepstakes.  Every few months we would touch base via e-mail.  Well I had not heard from my friend in a while so I sent out an e-mail asking how her husband was doing.  She informed me that he had succumbed to ALS last October.  That was 16 months after his diagnosis.

So many different emotions went through my head when I heard the news.  Sadness for her loss, despair for rapid deteriation, and I'll admit it fear for myself.  I don't want to go fast, I don't want to go slow/painful.  Let's face it.  I don't want to go at all!  I know I have no choice when it comes to ALS.  I wish I had some say in this and I do when it comes to my emotions.

I remember years ago a friend was dying after a long battle with cancer.  She was a mother of 3 (2 girls and a small little boy).  We were with her in the hospital as the end came near.  Everyone was telling her it was ok, she could let go.  One of her last responses was to say, "How can I?  I'm a mother."  Like my friend, I too am a mother.  Perhaps my children are not young (24-14) but still they are my babies.  I want to be there when the great milestones of their lives occur.  A bonus would be to have time left over to spend with Dennis.

Speed Bump #6

I fell the other night.  It's been a while since this has happened and as usual there was no warning, just a "swan dive".  This time it was in the bathroom after I had crossed the "Great Divide" (see Speed Bump #5).  I suddenly felt weak, tried to push the walker against the tub so I could sit down on it but I didn't quite make it.  Down I went onto the ceramic tile floor, hitting my arm on the counter as I went down.  "Oh crap!" I heard from the bedroom from Dennis.  So as I lay on the hard, cold floor; I waited for my husband of almost 29 years come in to see if I was alright.

Unfortunately, "in my dreams" is what I came to realize.  The man who has coached numerous teams for many years came in the bathroom with his coach's cap on.  He proceeded to give me directions to crawl on my stomach out the bathroom, across the Great Divide, and onto the bedroom carpet.  The goal was to reach the wing chair in the room where my hero would then try to lift me by the waist onto the chair.

Have I mentioned the fact I have little if any strength in my lower legs?  So imagine this - I'm crawling on my stomach, dragging myself inch by inch.  My coach is above me giving instructions and every time I moan or (heaven forbid) complain, I'm shushed because I'll wake the kids up. Not one time through this whole "situation" does he think to ask if I'm alright or if I hurt myself.  In his defense Dennis later told me that he could tell I wasn't bleeding.  So I finally got to the chair and onto my knees where I was ceremoniously lifted/squeezed around my waist till I could be dumped in the chair.

By the time I rested and then got to the bed, I was sore from the waist up.  And I have decided on a new name for my loving husband of 29 years. . .Frau Brucker (Cloris Leachman's character from Young Frankenstein)!