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.
Friday, March 18, 2011
Wednesday, February 23, 2011
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.
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.
Wednesday, February 16, 2011
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.
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.
Thursday, February 3, 2011
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)!
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)!
Tuesday, January 25, 2011
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.
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.
Sunday, January 23, 2011
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!
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!
Friday, January 21, 2011
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?
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?
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