Speed Bump #19

Dad was buried yesterday.  I so remember his words - say a few words, stick me in the ground and get on with your life!  I so wish I could get on with LIFE.  I try my best not to concentrate on the tomorrows (how many, what they will be like, etc).  Panic attacks have taken over and I fight them daily.  They usually occur when I get in bed but yesterday they started earlier and I have that feeling in my gut right now.  I so do not like where I am at the moment.  I think it robs me and the rest of the family from precious time together.  I hate that my voice is now affected and I have constant dry-mouth or my tongue feels like it is coated with powder.

I don't want to just sit in this powerchair and waste away!  Our finances are bad too which just adds to Dennis' burden and I need to work to help.

Speed Bump #18

So much going on since last post.  Sorry I haven't been more deligent.  I was on short term disability from May through the end of the school year due to problems with blood thinner medicine.  Nothing with the ALS though I've lost some ground.

Lost my Dad yesterday.  He was 99 years old and he went the way he wanted to go.  In his own apartment, in his own bed, in his sleep.  I had been praying that the Lord would gently take him home.  That it was time.  He was ready.  No matter how prepared you are to have a loved one go, you really aren't prepared.

I am now an orphan.

Speed Bump #17

What a beautiful morning!  I took the power chair around the block (1+ miles).  More than half way through and Dennis showed up in the car to check on me.  I asked him if he thought I was tipped over, wheels spinning and neighbors ignoring me.  He said he was just being a good husband.  I say Amen to that!!  No one could have a better husband than me.  Last Sunday was our 29th Anniversary.

Hard to believe it is Memorial Day Weekend and there are 13 school days left.  I had so wanted to get back before the year was over.  Not sure this is going to happen. I could go to help pack up but not sure how much "help" I would be.  Still waiting for Disability to kick in and have some income.  It has certainly put a strain on the bill paying!!  Many people are worse off so I will count my blessings.

Speed Bump #16

I spent an hour this morning trying the cpap machine we got last week.  We haven't really started during the night simply because Dennis viewed it as one more thing to do in the evening.  Now that soccer season is over perhaps he won't be as exhausted as he has been.  I feel so bad for him.  He takes Matt to school and picks him up ( since this is not his home school but where I teach), does the grocery shopping, laundry, yard work, and cleans the house.  He also takes care of my needs, dresses me each morning and gets me in bed each night.  Besides that he teaches 5 levels of German.  There are repairs to the house he cannot get to or even know how to do it.  Since I am not working and short term disability hasn't kicked in yet, we are missing a third of our income.

We had hoped that Peter could find a part-time job in Virginia Beach.  He had one interview but I gave him the wrong date!  He went to it a day late.  First priority is school but he just needs a small job to help his self-esteem and pocket money.  I really screwed up there.  I just really wish that something good would go his way just once.  He thinks no one will ever take a chance on him.  It's hard to have faith when he doesn't have faith to begin with.

We have some people from church coming to see if they can help with some repairs.  I hope they can because this would be one answer to prayer.  Now if we could find someone to help me mid-day with lunch and personal needs that would help out.  Even to come by and talk with me would break up the day.

I leave with one bit of wisdom:  A bedside commode is only good if the bucket is in there!  Think on that one and you have a view of our life.

Speed Bump #15

I sometimes wonder why I can't keep my mouth shut.  I seem to alienate the one person I depend on the most.  I tell myself every day before my husband comes home not to talk too much.  But of course I find myself talking and talking loud and complaining.  I truly do not mean to come across this way.  I do count my blessings each and every day.  I'm sure or I think I'm sure that this all comes from frustration.  I can't do for myself and this angers me.  And I stew all day long with no diversions, no one to talk to.  Poor, poor pitiful me!!

Jeremiah 29:11, 12, 13  (I must remember this!)

Speed Bump #14

I am quite upset today.  Nothing seems to be going smoothly thus a speed bump entry.  I one thing I really hate about all this is the loss of independence.  I find there is less that I can do for myself.  For example, adjust the AC.  I can't reach it so I wear sweaters and wrap blankets around me.

I also hate becoming invisible.  My eldest avoids and my youngest ignores my parenting.  I wanted to first excuse the youngest because of the stage in his life, the teenager, but find I cannot.  I'm not dead yet so please listen when I talk.  Respect my requests.  For my eldest (and only girl) I think she resents the notion that because she is the female, she should naturally do for her mom.  Wrong generation!

I get so lonely here all day long with no one to talk with or share my time.  When the family comes home, I want to talk.  Verbalize.  They are tired from their day and don't want to talk.  This is when I truly miss teaching.  The interaction with other adults and the quirkiness of 8th graders (that are not my own).

Speed Bump #13

Strange but humerous entry.  As I sit throughout the day either reading, praying, or watching tv, I have to try not to need to go to the bathroom.  I can't do it on my own and I really don't think a neighbor wants that phone call.  I have resisted the "Depends" avenue but have finally gone to those protective liners.  They remind me of what we wore back in the days when first having those "monthly visits".  I have the wad on and unless I sneeze it stays dry.  The other day I was in my new power chair (the one that can go horizontal to relieve pressure on your seat) and I just had to go.  I was maintaining my composure when I coughed and the floodgates opened!  I sat there and thought, "Wow.  I have a M.Ed. so I must have some intelligence.  And here I am peeing in my pants."  Depressing but at the same time very funny.  Later when Dennis called to check in I told him there was no need to hurry home that day!

Speed Bump #12

As I sit at home each day, I find my humor in strange ways.  The other day I was hungry so I went to the frig.  Unfortunately, the powerchair would not let me get close enough to grab anything.  So I sat and stared at what was out of reach.  I've decided to advertise this new type of diet.  It's called The Out of Reach Diet.  The only requirement is to sit in a chair out of reach of any food in the refrigerator and stare. You do this as often as the urge to eat.  Powerchair is optional!

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)!

Speed Bump #5

When I started this blog I said I would discover those situations in life that was not handicapped friendly.  Some of which I have encountered are within my own home.  I'd like to ask a question to start:  Who decided that bathroom doorways should be more narrow that regular doorways?  Shouldn't you have as much space as possible to get in to a very important room?  A wheelchair can't manuever it.  Neither can a walker.  So this is how I do it (at the moment).  I use a walker upstairs to get to the bathroom door where another walker is waiting for me, for the BIG TRANSFER.

But wait!  What's that on the floor in the doorway?  I never knew what a threshold was but I do now.  It's that an inch slab of ceramic tile that I have to get over.  Sometimes to my "dead" left foot it feels like it's more like a foot high.  So here is how I approach this speed bump.

I enter the master bedroom via the walker.  The bathroom is directly to my right.  I close the bedroom door half way so I can place the walker behind it and I am parallel to the bathroom doorway.  The bathroom walker is waiting.  I place my left hand on that walker, brace my left elbow on the doorframe, lift my left foot over the threshold (if I'm lucky), all the while holding the bedroom walker with my right hand.  The moment of transfer occurs when I lift my right foot into the bathroom while raising my weight from one walker to the other.  Whew! I made it!

While the whole process only takes a few moments, there are times that it feels like I just ran a marathon.  Dragging my left foot as I use the walker is exhausting enough but then to cross the Great Divide . . . No wonder I'm so tired.  Depends are starting to look better and better!  Just kidding.

Speed Bump #4

All of you out there who lather themselves with lotion after you bathe, you are to be envied.  The whole shower experience is demoralizing enough.  When it comes to applying lotion, well many days that just doesn't happen.  Partly because I don't want to "ask again" for something I should be able to do for myself.  And I can to a point slap lotion on my shins and say, "done".  Those of you old enough, do you remember the Little Feat song, "Feat Don't Fail Me Now"?  Well 50% of my "feet" do fail me so rarely do they get a treat of lotion.

One time when the dryness reached desert proportions, I broke down and asked hubby to put lotion on my legs/feet before I went to bed.  Now understand, turning over in bed is a challenge when one leg is "dead" from the knee down.  It now involves a lot of hip movement and gravity to roll from one side to another. Along with reaching behind me to grab the headboard.  This night, however, the amount of lotion on my legs had me stuck on my back unable to turn left or right.  The sheets were stuck to my legs and I couldn't unstick them.  So there I lay listening to hubby sleeping peacefully.  I was finally able to lift the covers with one hand, hold the headboard with the other, scoot the hips till one foot went over the other and then like a tub that finally overflows, I was able to roll/flop on my side.

I think I was able to get a few hours rest before nature called!

Speed Bump #3

Today during school (did I mention I teach 8th grade civics?) I am being visited by someone from Assistive Technology.  I find it really hard to accept that I am in the position of needing help but accept it I must.  I obviously find writing (the old fashioned way) more and more difficult.  Of course being right-handed and it's my right hand that I am losing use of is another irony I must face.

You know that cable show, "What Not to Wear"?  Every time they talk about the terrors of elastic waist pants I want to scream, "How else am I suppose to get my pants up??"  I really don't want to be that frumpy old lady in the scooter ads.  When I turned 50 I thought I had to start wearing shirtwasit dresses to "dress the part".  I remember someone asking me if I felt that way?  The answer was no then and is still no today.  However, I now need to look at ease when alone to care for myself.  I've concluded if I try to look "sharp" from the waist up, who cares what I'm wearing from the waist down!  Right?

Speed Bump #2

I always loved to cook.  A secret dream was to own a restaurant.  So often one child or another would come up to me in the kitchen and ask, "What's for dinner, Mom?"  My answer so often was, "I'm not sure.  I'm not done yet."  Well not only do I not have use of my left foot, my right hand is weak and I am losing muscle in it.  My index finger crooks and so utensils, knives, etc are now hard to use.

Dennis has taken on the task of cooking dinner and sometimes I sit in my wheelchair in the kitchen and "walk him through" cooking dinner.  This past Thanskgiving, Sarah, our 24 year old, was doing the cooking but I wanted to do something.  Eureka!  Go get the old card table and put it between the kitchen and the breakfast area.  Bingo!  Wheelchair was now at table height.  So I was able to do some things to contribute.

Another day I asked Dennis if  he knew if we still had the electric skillet.  The next thing I knew I was making home fries in the skillet on the card table.  The one "drawback" is that I need a sous chef but Dennis or Matthew are more than willing if it means mom is back in the kitchen!  So tonight I gave Dennis the night off and made dinner.  It wasn't me standing at the stove but it was great to get back in the kitchen!

Speed Bump #1

I was always an independent person.  My mother died when I was 16 years old and my only sibling, my brother, when I was 38 years old.  I have been known as the care giver most of my life.  My father will be 99 years old next month and he has more mobility than I do.  The hardest thing to accept is that I need help, that I am no longer 100% independent.

Thankfully my husband of almost 29 years, Dennis, has taken on the job.  When my brother was dying of cancer and under hospice care, the reality was that I was the primary care giver.  I was the one who gave him morphine in his catheter and stayed up waiting for oxygen to be delivered.  So after spending most of my adult life caring for others, including three children, this was the first big hurtle.  I haven't been always successful and I certainly haven't always found the humor in the situations.

But a constant adjustment it will be.  Thankfully my family now remembers more times than not to make sure when they move the walker or wheelchair out of the way that they then move it back within reach.  Very frustrating when it's just that inch out of reach, teasing you and saying, "Nay, nay,nay".  Almost as frustrating as making sure you have enough time to get in to the bathroom not to mention having the balance/strength to get "situated".  But those stories I'll save for another day.

To anyone interested

I am new to the whole wheelchair community but I am permanent a member.  I have recently been diagnosed with Amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease).  It is estimated that I have witnessed the progression of this disease for two years.  All I know is that for the last two years I have gone from tripping/falling, to a cane, to a walker, and now a wheelchair.

The idea of a blog came to me after my first trip to the mall in a wheelchair.  I was struck with how other shoppers viewed my existence and how difficult it was to get in to some of the smaller stores.  I left that first time feeling depressed that I couldn't get into some stores and my 14 year old son had to leave me outside to wait for him to shop.  Horrors!  He'd have to come as close to the doorway that the alarm system would allow him to show me what he wanted to get or how a pair of jeans fit.

In the meantime I was subjected to looks by adults and children alike.  Perhaps I was feeling insecure.  I use to walk all over this mall and now I can't.  Also the ALS has not progressed to where I "look" like I belong in a wheelchair.  You can't tell that I have no use of my left leg below my knee or that I haven't been able to wiggle my toes in two years or ever again!

All I know is I was left with the impression that I was in everyone's way NOT the other way around.  Being pushed around was frustrating to say the least.  Especially when those around you make YOU wait while they pass.

So the idea of this blog is to comment on how our world in spite of ADA regulations is not always handicapped accessible or should I say handicapped friendly.  I will discuss those interesting "speed bumps" those of us in wheelchairs have to maneuver around everyday.  Hopefully with humor but hopefully I discover the speed bumps I put in front of myself.

Mlee