My story starts when I was probably around 5 or 6 yrs. old. I started realizing that I couldn't run like the other kids, and I fell a lot. I just thought I wasn't athletic like them- but I still tried.
It seemed the harder I tried, the more I fell.
I lived like that for many years. When I was around 10 or so, my parents took me to a free clinic to try to figure out what was going on with me. All they could tell me was my knee caps were underdeveloped and they could replace them but they couldn't guarantee I could walk again- so we passed on that.
I was always the last one picked in gym class during grade school. Thankfully in high school, the doctor wrote a note so I was able to be in adaptive P.E. where there is no running or hard physical activities to do. I was relieved, but still wished I could do the things the other kids were doing.
I always pushed myself though. I'd stay after school and work out trying to build myself up, and I had a workout routine at home too. But I just wouldn't get any stronger.
It was depressing and frustrating and I thought I must be lazy or something. But I kept trying. I walked a lot for exercise and did whatever I could.
I still couldn't run though- never been able to do that. Stairs were hard for me and it was hard getting up off the floor.
In 1985 (the year I graduated high school), I met my husband-to-be at my Uncle's wedding. I didn't like him them, but the next year he grew on me ;). We married in 1987 and had our first baby, Jeffrey in 1989.
When I got pregnant with Jeffrey, I was so scared knowing that I was weak. I didn't think I'd have the strength to push a baby out! But somehow I did. He was a big baby too- 9lbs. 3oz....21 1/2in. long! Whew! Keep in mind, I'm a small person- 5'2" and my husband is 6'5". Guess we know where he got his size from!
When Jeffrey was about 6 months old, I was having a problem with my hip "popping" so I went to the doctor. He examined me and told me to lift my straight leg up to his hand. I told him I can't and never have been able to. He said that wasn't right and sent me to see a neurologist.
After he examined me, he did a needle test (don't know what it's called). All I remember about that is it hurt. During the test, he called in colleagues to see my "numbers"- they were all amazed. Fortunate for me, he had been studying SMA and was "excited" to see he had a patient with what he thought was SMA.
He wanted to do a muscle biopsy to confirm, but he was pretty sure. He was right. I must say, I was so relieved to know that there was something wrong with me and I wasn't lazy because I never really believed I was. So I've lived with SMA since I can remember but have only been diagnosed since 1990.
Thursday, July 24, 2008
My Story continued...
So let's see, where did I leave off. Oh yes, I explained to you all how and when I was diagnosed. I was working at the time at a CBRF home which is a retirement type home for the elderly. It was considered the phase between a retirement home and a nursing home.They were somewhat independent yet needed their medications monitored. I loved working there. I was jack of all trades. I was a RA (resident assistant), did some office work, and ended up being a part-time cook. I learned a lot there.
Working was getting harder and harder to do. We finally made the decision that I should quit and be a stay-at-home mom. Which I did and I loved of course. I did help Greg's mom out with computer work for her car wash, but she became ill with cancer and ended up passing away.
A couple of years after Greg's mom passed away, we made the decision to move to Dixon where I'm from. So we bought our first home and moved! We've been here ever since and we like it here much better.
As soon as we moved in, we found out I was pregnant with baby number two! That had been our plan all along - to have another when we got a bigger place to live.
My pregnancy with this one was much easier. I knew what to expect and I think running around with Jeffrey kept my muscles working! With Jeffrey, he was 9 days late and I was in labor for 21 hours. With Zachary, he was a day early (thank goodness otherwise he'd been born on my birthday), and I had only 8 hours of labor- that includes the delivery! He too was a big boy - 9lbs. 2 oz, 21 1/2 inches long. I think he would of weighed exactly what Jeffrey had if he hadn't pooped right before they weighed him!
With both babies, I didn't walk around with them much knowing I fall real easy, plus they were heavy! I felt bad, but when they started walking around, I didn't pick them up much at all because I physically couldn't. But I would sit down as much as possible to hold them.
If you have SMA and ever wondered about having babies while having SMA - it is possible! I gained like 50 lbs. with each pregnancy which made it harder to get around when you are carrying extra weight. Just keep pushing yourself. Yep, it will tire you out, but do it anyway and take a nap. It's worth it!
Until next time...have a great day!
Monday, July 28, 2008
Life Today with SMA
My babies have grown. My Jeffrey is 20 and my Zachary is 15 (updated 12/28/09). They are both way taller than I am and most importantly, strong and healthy. I do realize they are carriers and it would be a good idea to have their future wives tested to see if they too are carriers. I have been happily married for 22 years this October!I am still able to walk although with a waddling gait. I get asked a lot if my leg hurts because I'm "limping". I am still pushing myself to this day.
My best friend and I try to go for a walk everyday. I believe walking and water exercises are the best forms of exercise for me. Stairs are my number one enemy, but I still do them. That's part of me pushing myself.
When I'm having a bad day, I will try to avoid them or ask for help with getting things up and down. I have noticed recently that I'm losing my balance a lot more often. I keep considering- to myself- about maybe me getting a cane to help me keep my balance. I'm always holding onto things to help steady myself. I see it coming.
If I overdue it, I get neck spasms. My head is heavy to me, so I'm all of the time leaning and holding my head up. I sometimes think people think I'm bored because I look that way, but in reality I'm just holding up my heavy head.
My back also gets what I called "tired". It feels like it's tired of holding me up so I have to lay down. I was fitted with a back brace quite a few years ago but I didn't like it. I don't like to draw attention to myself and that certainly did that. Plus I thought, if I start wearing it, won't my back start relying on it therefor get weaker?!
I can't sit too long, stand too long, or lay too long. All causes discomfort so I have to readjust often. My hands tremble a lot. I've noticed this to be getting worse recently. I also have body twitches. Most people don't notice it but they are there. My weakest parts are my legs, back, neck, arms. I feel my hands are weak but they say it shouldn't affect them.
I don't fall as much as I did when I was younger and I believe that is because I am so cautious now. I can fall with the slightest thing hitting me in the back of the leg. When I over due it, I start falling. It's my body's way of saying stop.
I get fatigued a lot. I notice it more in the winter than summer- that could have to do with the sun too- who knows. I need to get at least 9 hours of sleep to feel good mentally, but then my body hurts from laying so long.
Whew...that's enough. I don't like talking about my aches and pain much because I feel like I'm whining. But this blog is about sharing so that's what I'm doing. Again, I focus on what I CAN still do and not on what I can't do. You have to. I could be a lot worse off and for that, I'm grateful.
Tuesday, July 29, 2008
Hereditary?
SMA forms when both of your parents are carriers of the defective gene - from what I understand. So apparently, my mother, and biological father, of whom I've never met, were carriers. My sister, who has a different father, is not affected because her father was not a carrier. No other know family members are affected. I'm glad, but find it strange. You'd think maybe a couple generations ago, someone would of been affected.Do you have any other family members affected with SMA?
Monday, August 4, 2008
Medications
Good day. I was asked a question from Megan if I take any medication for my strength so I thought I'd write a post about it.I've heard of trials going on, but thought they were mostly for the younger, more severe, types of SMA. I haven't dug too deeply in finding out any other information. I just pray that they are helping the little ones.
I personally hate taking any kind of medication. I'm more into the natural, herbal way of life. I don't go overboard, but if something is ailing one of us, I look for a natural route. I have searched for something that would help muscles, but just come up with protein for building them up. I don't know enough of the technical stuff so I doubt I will find something out there. But I'll keep looking.
My back goes through stages of being "tired" and it's mostly because I lifted something. What medications are you on or is your loved one taking?
Tuesday, August 5, 2008
Other Aches and Pains
So we all know that we have SMA or love someone who has it. I'm wondering about other problems not associated with it. For instance, I have Raynaud's disease. I am always "made fun of" by my family because I'm cold all of the time. I am!I love summer because I can thaw out. Unless they make me turn the air on in the house. Anyways, when I get too cold, the tips of my fingers turn white.
For the longest time, I didn't know why it did this. I went to the doctor and this doctor was just fixed on the fact that I had SMA. In other words, he didn't know what was wrong so he blamed it on my SMA. Well, after seeing another doctor, I come to learn that I had Raynaud's disease. The blood vessels in my fingers restrict when they get cold and blood is unable to flow causing them to turn white and numb. It's a weird feeling.
My remedy, I take ginkgo biloba when the colder months approach. If I take it everyday throughout winter, I have no symptoms. I was starting to hate to go outside because I was afraid of it happening, but this stuff works great for me.
Any other ailments you wish to share?
Wednesday, September 24, 2008
Chiropractice Care
Hi all,How is everyone doing? I thought of a topic that I haven't brought up before...chiropractic care. I think it's a must.
I've been told I have a slight curve to my spine so I thought it would be important to visit a chiropractor every once in a while. My hips get out of line a lot and I can tell when I need a visit.
Here of late, I've been going once a month whether I think I need it or not. I usually wait until I'm in major pain to go but that's stupid. So I'm in the preventative mode now. A few years back, I had to go quite often. My neck had a spasm that I just couldn't get rid of. It was from just holding my head up, stress, trying to do too much, etc... I still get what I call "neck headaches", but I know I need to just lay down until it goes away. Sometimes that's not until the next day.
But I'm wondering...does anyone else use a chiropractor?
Have a great day!
January 9, 2009
Exercise
I've been asked what kind of exercise I do and if it helps.
Before I knew I had SMA, I tried many types of exercises trying to build my strength. Nothing seemed to work. But looking back, I think it was the best thing I could of done. I might not had build up any muscles to be stronger, but it kept me leaner and lighter. It kept my other muscles more fit and I had less to carry around which in turn, made things a little easier.
The best exercise for me is walking, deep-water exercises, and light resistance lifting, not to mention house work. After Zachary was born, I joined the YMCA and took a deep-water exercise class. I loved it. It was a no impact workout, which is kind to my joints, and I could move and lift my legs! I could only do that in the water and it felt great. But...the chlorine in the water was eating up my skin. I itched so bad from it. I would shower afterwords and apply lotion, but it didn't help. After I lost my "baby" fat, I stopped going but I have missed it ever since.
During the warmer months, I go for walks. I try to get out everyday. Every year, I have to 'start over' by going for short walks to build up my endurance again. I start with going around the block and then add another block until eventually, my best friend and I are walking almost 1 1/2 miles. It is sooo exhausting! But at the same time, it makes me feel good. So I try to focus on the 'feeling good part'.
During the cold months, I do more resistance lifting on our Bowflex. I only do about 10 minutes of it, but it helps. Recently, I've started adding in some Yoga stretching- that feels really good to me. I really miss being able to get out and walk though. My husband and I talked about maybe saving for a tread mill for me to walk on when I can't go outside.
If I get groceries that day, that's my exercise! If I do a lot of cleaning in a day, that's my exercise! I just make sure I do something during the day for exercise. If I do too much, I pay for it. But I have to do something.
I feel exercise, along with eating right, is very import in maintaining my independence. Exercise is good for the mind, soul, and body! Yep, it's exhausting to do for those of us with SMA, but do it anyway and take a nap and then do it again the next day!
Fatigue
Did I mention I'm tired almost all of the time? I am. I guess it doesn't really matter if I sit around and do nothing or do stuff off and on all day. I'm just tired. Again, my family makes "fun" of me because I tell them I have to take my nap before I go to bed every night. Usually when we sit down at night to watch tv, I'm lucky to watch my programs because I usually fall asleep. Then I can easily sleep another 9 hours that night. Since I have been taking L-carnitine though, I seem to have a little more endurance. Again, I just push through the tiredness and make myself do things. It's good for me.
Yoga Update
February 22, 2009
I have been doing Weight Loss Yoga from The Biggest Loser for over a month now and I love it. The very first day I tried it, I cried.
It was hard to do what they were doing. I could do it, but it was hard. Then after listening to Bob on the dvd, I realized, it's supposed to be hard. Even they are struggling.
So I did the best I could. I did the modifications that they suggested and it got better. It's still hard to do and I don't think it'll ever get easy, but I sure am feeling the benefits from it. My legs were so tight but now I am feeling the difference. I am much more stretched out and things don't hurt as bad. There is no impact on this dvd. That's good because I can't jump or anything like that. Plus I feel I've been developing arthritis the last year or so. I can't praise this dvd enough.
It only cost $10 at Amazon. I don't do my bowflex exercises anymore. I like having a dvd to follow- I don't feel like I'm by my self doing the exercises.
The Biggest Loser: The Workout - Weight Loss Yoga
December 28, 2009
I was reminded of some pain growing up when another mom asked our SMA III Group about it so I thought I'd share.
There were many, many nights that I would lay in my bed in be in excruciating pain. It was always in my legs- hips, knees, generally all over.
I was told it was probably growing pains. With all that pain I should of been 7 foot tall, but that wasn't the case.
The only way I could make it go away was rocking myself in bed. It soothed me.
Eventually, it went away.
Looking back, I think it was brought on by "doing too much". Too much for me anyways. I was always trying to keep up with everyone else and I believe it caused my muscles an overload and it was their way of saying "you did too much again".
I get that still in adulthood but rarely.
Tylenol does help the pain go away or applying heat feels good.
No comments:
Post a Comment