Hello, I feel like touching on progression of ALS today.
First of all ALS definitely has it out for the right side (dominant side) of my body, more than my left. Sometimes it's hard to know for sure which really began first the top or bottom. However the move upward is faster and more severe. I remember when my ankle muscles started getting weak. I kept feeling I had mildly sprained it, I remember first not being able to stand on my toes or heel of right foot and told I had drop foot. This coincided with my back injury. At this point I was fitted for a custom AFO. It didn't help the pain but it improved my walking drastically. I had been swinging my foot to the side to walk after my back injury and this enabled me to walk almost normal, I remember first noticing my right calf muscle, which had always been rock solid and easy to flex starting to soften. I started noticing turning keys or clipping my nails made my index finger sore. About this time I noticed my water often running out of the right corner of my mouth and an ever slight slur.
I also had my ways to explain it away. My ankle hurt because I'm clumsy and my right foot has always turned in if I wasn't keeping myself aware or wearing high heels. I couldn't wait to wear them again. So I concluded that was causing the ankle problem. The drop foot was from my back. I was baffled about my soft calf and started trying to work it out. I tried using more yoga poses geared at strengthening them but found it getting harder to keep my balance in any pose that needed balancing strength from right leg. Well, I've always been clumsy. I always had good and bad yoga days, clumsy and stress was causing more bad days. My water was dripping down my chin because I wasn't paying attention. My fingers were stiff and sore because I was getting arthritis. I decided my little slur was because I had gotten carried away being silly at home and talking in a real country voice too much. Yes, I'm serious. I remember telling myself to stop because I'm starting to really talk like that in public out of habit.
You can make yourself believe crazy things in desperation. My body had been telling me for a while something was off but I didn't want to believe it. I mentioned it to Tony, but didn't want to sound whiny. After-All except for most people thinking I was a little underweight, I was the picture of health. Lean and fit, I worked out and ate healthy, except for my addiction to sweets. I worked hard to keep my caloric intake where I wanted and still get the right nutrients and my sweets too. The back injury changed my focus. I wasn't able to do anything to notice these symptoms because of the pain. A lot of those symptoms were forgotten because I was unable to do the things that made me notice them. It did start the tests rolling and a big puzzle started to take form.
Now that very slight slur is a, "that bitch is drunk or something" slur. Very hard to be understood over the phone. Very hard to project my voice. The more I try the more hoarse it gets. I'm best understood in person very close up and no background noise and I can talk very softly. My water does run out of the corner of my mouth a little more often but not much. Now It just seems to want to stay in my throat and come back up in small amounts and I re-swallow. It used to be easy to gulp down a 16 oz bottle real fast. It was much easier to stay hydrated. I don't really remember eating problems back then, but now forget anything that takes real chewing. My jaw tires fast. I've noticed my food seeming to want to slide to the back of my throat before I'm ready. I've found plenty of soft foods and I'm certainly not having trouble keeping this extra wait on. My doctor wants it that way, but I so miss my thin body. I'm keeping the weight on as long as I can because I know the time will come that I need it.
This is about the state I was in at diagnosis. Now my right calf is complete mush. My right thigh has atrophied a lot; I first noticed on the inside area right above knee. It cramped and twitched a lot and got smaller. Then for weeks my whole front thigh would cramp up, very painful. This is when I'm really getting the pattern for me. There's painless twitches. Then a constant feeling of soreness is best I can explain, almost like a good hard workout soreness on day two or three. Then comes the extreme cramping. then I can see the muscle atrophy before my eyes, then I can't use it. This is how my walking ended. All my leg muscles compensated for the loss of others til there wasn't enough left. It can't come close to holding my weight and when I try to use it for just a little support, it gives. There is some muscle because, although much less intense, I still get that whole front quad cramp. I just say to it, you're fucking gone, I know, you can stop now!
I've always had good upper body strength for a female. I did pull ups, putting Tony to shame. I was proud of my muscular arms. I could put many men to shame flexing my forearms. Yes, I'm bragging. During a short hospital stay, for planned surgery, three years ago a nurse came in and said, "Oh, we have to get that IV changed. your vein has blown." Looking closer she mistook my muscle for swollen tissue, and brought other nurses back to look at my very slender but muscular arms. Now my right arm isn't mush but it's definitely not muscular. Just doing the flexing motion hurts, and I can see it's atrophied and sunken compared to my left. My left arm, hand is now my dominant. I'm sensing my right arm to be the next fully useless limb. It's twitching more and sore and those hard cramps are showing up. My fingers are still usable in comparison to others, but they're weakening and want to curl. I can still type with them but pay the price. Sometimes I manage to open a water bottle but less and less. Now my left side seems to be all in unison. not more at one end, just slowly getting weaker and the twitches are spread equal.
I could go on but I imagine you have a life to live. I planned on talking about my face. Maybe tomorrow. I'll just say I only know my real smile from pictures now.
Until next time, take care
April
[subscribe2]
Sunday, April 7, 2013
Saturday, April 6, 2013
My Family Knows Now
HEADS UP - This post is some info about my family. Not much ALS related but I hope you still read on.
I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
[subscribe2]
I did it! I told my family about my blog starting with my parents in person.
My Mother gave me her 100% approval and thinks it's great for me. What a relief. She did get in touch with me after going home to read everything to tell me God must always be capitalized. I will Mom. Thanks, I love you.
Dad approved 100% after he read the homepage aloud for everyone here just as I would have myself. Thanks, I love you
Who doesn't want approval from their big sister? She read and got back with me right away and told me she is proud and thinks it's a great blog, and other things great to hear from her. Thanks sis, I love you
All of my children told me they love it, and I have their 100% approval. So much relief. I have a wonderful family and I'm sure most of you may find it strange I'm just now telling them, and especially that it's scary for me. Even if we handle things in a way that is strange to you, we are very close.
I've done a lot of texting and starting to cramp up, not to mention the sun will be rising soon. I'm exhausted, so I'd like to introduce my immediate family now.
When Tony and I first met we both came with two kids and both inherited two more. We both had a son and daughter. While keeping it simple I want to introduce them. I'll go from oldest to youngest.
The oldest is Steven at 28 years old
Next is Tasha at 27 years old
We have Tyler at 23 years old
Last but not least is Amanda at 22 years old
Getting into Grand-kids is so simple yet tricky.
Ya know, there just aren't many "traditional" families anymore. It can get complicated. Half this, step that, uncle younger than nephew and all that stuff. Let's not pretend you all have no divorces, steps, halves and the such. If your family is perfect, you're an oddity. It's OK, Everyone is statistically odd in some way. And there are a lot worse things to be odd about than a long line of intact family. Either way, Come on now, stop pretending. Your family is only picture perfect on the printed photo, Right? It doesn't mean there is no healthy family love going around.
OK, shooting for simple...
Tasha and husband, Billy, have 3 young boys at home. Jesse, Ethan and Uriah. Two grown kids that have left home, Nathan and Amber. Tasha was a great Mother to teens at a young age. While loving them both, she has a very strong bond with inherited daughter.
Amanda and Jason have our newest Grandson at 9 months old, Brayden, along with an older inherited Grandson and inherited son Amanda loves like her own, Jamieson.
Our boys have kept away from the parenting life so far.
It's birthday time for Tasha's young boys all born close in time of year. Time to hit up Toys R us!
They will be added to my family pictures.
This is my website/blog about my progression with ALS. I will throw snippets of family info sometimes. It helps you better understand the person behind this case of ALS. Respecting my family's privacy is of utmost importance to me. I'm the one opening up online. It's not recommended in general but, knowing my fate, I'm not so concerned about what that next employer might read about me in a few years.
This post is for those interested in the person behind this ALS case.
Most Importantly, this is for my family. I love you all!
Until next time, take care,
April
[subscribe2]
Friday, April 5, 2013
Deciding when to tell... a rambling post
I feel like I'm living a double life here and will be outed at any moment. I've always been a private person. My family is used to it although sometimes they've accused me of bordering paranoia. So many people have begged me to join facebook. I hate facebook. Tony does have an account so if anything important comes up, he usually tells me. The way I've shunned all social networks from their beginning, they will surely be shocked to hear I'm putting my life out there.
I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny. It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.
Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony. My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.
My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.
Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.
I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?
Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.
So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.
I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.
I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.
I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...
Until next time, take care
April
[subscribe2]
I mean I plan to go all the way. ALS gave me no choice. So tomorrow is Saturday. Since my diagnosis, Saturday is time with my Mom. I like to call it Saturdays with April, but nobody else seems to find it the least bit funny. It started out as our movie day, I made a review page that I keep in a 3 ring binder, and we wright our little reviews, more so about our experience. The Goodwill is part of our day too. I love the Goodwill. Mom would get a cart and bring it to me to use as my rollator. It's been a blast. A few times when I haven't felt well we rented from redbox and watched a movie from my bed. I still can't believe I watched Magic Mike with my Mother. I can hardly stand watching a kissing scene with her. I do live in the Bible Belt after all and was raised strict Baptist. Maybe more on that another time.
Since I've lost the ability to walk and don't have a wheelchair van yet, it's been more difficult. It's not impossible. Tony can take me and manual chair to the theater and Mom can push me, and tony pick me up. We haven't yet, but my Mother does knows her way around a wheelchair. She took care of her sister for a long time. She had Freidrich's Ataxia. It's a neuro-muscular disorder. Yes, I've checked. There is absolutely no link to my ALS. She had childhood onset which has a faster progression. I remember my Mother and Grandmother giving her a bath after leaving their full time job for the day. I was probably about 5 and couldn't wait for this time be cause I could ride around the house in the wheelchair. I had so much fun. My God, the irony. My aunt by this time had little muscle control and typed with her nose what she needed done for the day. She was a beautiful, intelligent woman with her life cut very short. She died in her mid-forties. My grandmother spent many years getting up to turn her every two hours. She worked a full time job at a hospital and she was the wife of a pastor, which in itself is a full time job. I was about 10 when My grandmother came to terms with the fact she couldn't do it anymore and had to make the most difficult decision to have her daughter placed in a nursing home. Another pastor came over to help break the news to my aunt. I still remember the gut wrenching cries coming from that room. Do not judge my Grandmother for that decision. It really wasn't a choice. There was no home health care in those days, no real support at all, and it was way past the point of being dangerous for her to be home. I know my grandmother never fully recovered from that day though. From the guilt she shouldn't have carried.
My Mother spent every Saturday for the remainder of my aunts life going to the nursing home and making sure she was being treated right, She still gave her a bath every week too. About once a month she took her out shopping for things she had typed with her nose. She got her in and out of a wheelchair alone. she was frail but dead weight. She brought her home and took her back every Thanksgiving and Christmas to be with the family, and many young birthday parties were at the nursing home. There was a nice area outside perfect for it.
Now my Mother is the fulltime caretaker for her other sister disabled by Type 1 diabetes. I don't know how Mom does it. She just says she thinks it's her purpose in life. Now her Daughter is dying? She doesn't deserve any suffering. She is so inspiring, a true saint in my eyes.
I feel like I've totally lost track of my post , but I'm not changing it. I said this is where I'll come and say whatever I'm thinking and this is how I think. One thought leads to another. It's like going to the computer to quickly look up a toothpaste brand or something simple, then two hours later you're watching 'funny cat videos' and thinking, what did I come here for?
Oh yeah, my big secret life story with ALS online. Since my first post I've wondered who in my family may have spotted me, if so probably on twitter when I'm tweeting slightly out of my mind from insomnia that ambien is starting to lose the battle with too. When I see any of them, I'm looking for clues. Are they saying certain things they would only know if they've been reading? A couple of times it seemed like it.
So I think I'm going to tell my Mother tomorrow. I'm nervous. Not so much because of what I'm doing, but the fact I've used curse words. Remember, I'm from the bible belt and spent several years with my 'by the book' pastor Grandfather.
I just want it out though, I've made up my mind, I"ll be who I am here. I know, no matter what she'll still love me. I'm forty. I can say fuck if I want. I haven't told anybody though. Not even my kids, only Tony. I want it out because I would like to bring them up some and show pictures too. I've always asked people not to post things or pictures about me online so it's only right I give the same respect.
I'm nervous, but I think it will make me feel even more free, and will be a relief when everybody knows. So I'll start with Mom, then rest of the family. I will be set free. Nobody worry, I will never post anything hurtful or private about another person without permission. Only about me, I'm the open book.
I have a request for any old friend or family members that if you do start following my blog, please let me know. I'm just curious. I think I've rambled enough and Tony just served me some delicious food. So I'm off...
Until next time, take care
April
[subscribe2]
Thursday, April 4, 2013
House Cleaning
Hello, I decided to use my energy today to clean up and add a little to the site. Please take a look around and don't forget to help spread the word about thealsexpress.com
I appreciate it.
Until next time, take care
April
[subscribe2]
I appreciate it.
Until next time, take care
April
[subscribe2]
Wednesday, April 3, 2013
One of those ALS days...
Hello to all. Lets get on with it here... One thing that has proven hard to get through my hard head is that it's hard to plan ahead with ALS. I'm a planner by nature. I like to know what I'm going to be doing, how long I'll be doing it and when. I guess that makes me seem like a joy to be around, but I'm talking business or important things here.
The main reason I've always liked to know those things is because it lets me know when and how long I have to fuck off, to do what I want, the best part of life, right? Trust me I know how to have fun. I like a balance though. Now I have the time for what I want to do but I certainly don't always have the ability.
Today has been one of those days courtesy of ALS. I've been in a lot of discomfort all day. I was able to do absolutely nothing. If you can't work or play, I mean even enjoy company, what's left?
If you ever hear someone tell you ALS is painless, please bitch slap them for me.
If you ever read in a book ALS is painless, please rip out the page and burn it for me.
I have a lot things to share. I hope to talk about choosing the right power wheelchair, and I have many other ideas. Some days things happen that I really want to share, so these ideas get put off. I guess ALS is like a box of chocolates too. I sure got a nasty one today.
I hope my next blog is more enjoyable. I started not to write a thing today but I felt the need to.
Until next time, take care
April
[subscribe2]
The main reason I've always liked to know those things is because it lets me know when and how long I have to fuck off, to do what I want, the best part of life, right? Trust me I know how to have fun. I like a balance though. Now I have the time for what I want to do but I certainly don't always have the ability.
Today has been one of those days courtesy of ALS. I've been in a lot of discomfort all day. I was able to do absolutely nothing. If you can't work or play, I mean even enjoy company, what's left?
If you ever hear someone tell you ALS is painless, please bitch slap them for me.
If you ever read in a book ALS is painless, please rip out the page and burn it for me.
I have a lot things to share. I hope to talk about choosing the right power wheelchair, and I have many other ideas. Some days things happen that I really want to share, so these ideas get put off. I guess ALS is like a box of chocolates too. I sure got a nasty one today.
I hope my next blog is more enjoyable. I started not to write a thing today but I felt the need to.
Until next time, take care
April
[subscribe2]
Tuesday, April 2, 2013
Bed Bathe and Beyond...
I think I can... I think I can... I think I - of course ALS will get the last word.
This is the story of me hanging on to some independence. Since I can no longer walk, I use my transfer chair to go from bed to shower, toilet, and vanity sink where my husband is getting used to blowdrying my hair, and we're starting on make-up. I've always kept it simple so he won't have to learn false lashes and the smoky eye. If he makes a mistake with eyeliner he can smear and we'll call it a smoky eye. Of course he'll need to do the other eye just so. I'm still managing all this stuff on my own but I feel the weakness more and more. Those make-up brushes sure are getting heavier.
I got the transfer chair the same day I got the rollator from my lovely local ALS coordinator. The chair was to stay in the trunk just in case we ended up somewhere with a lot of walking. I remember saying to myself, "it will be a long time befrore I ever need that." For those who don't know, the difference between a transfer chair and a wheelcair is the transfer chair has four small wheels. You can't push wheels with your hands like a regular wheelchair.
The first time it was pulled out is when I broke my toe, you guessed it, trying to walk. I broke a middle toe on my good side. I spent about 10 days relying on this chair. If somebody pushes you to the middle of a room, you're stuck. Nothing to grab on to to pull yourself. The thought of that bothered me. I tried to keep my cane with me to latch on to things just in case. Now I can use my left leg for support transfering, but then I couldn't put any weight on it. this was about five months ago. Once I was in the chair I pulled myself using the bed, doors, anything I could. Now I can use my left leg to help get on and off, but I can tell a huge difference in my arm strength. more so right than left as usual. The comforting thing about using the chair then was knowing it was temporary. I knew as soon as I could bare weight on that foot again I'd be back in action. I was.
Here I am now with that chair being, what I feel is my last dance with independence. I have a love/hate relationship with it. Anybody is welcome to sit in it when visiting me as long as they put it back in my reach right away. I still don't leave the walls of my bedroom/bathroom. I only get glimpses of the house I used to scurry through with ease. I get that as I'm being carried fireman style down to the garage door.
Tony is worried about me, which I appreciate, but frustrates me. I'm usually up all night. as soon as I think he's in the deepest sleep ever I twirl on my left foot into the chair from bed and start pulling with arms and scooting with left foot to piss. Damn near every time, he sits straight up, "What are you doing? You're going to hurt yourself, I asked you to wake me up!" I don't want to have to wake him up. A simple piss is the easiest thing after making it to the bathroom, I just swirl on toilet. when finished I swirl back on chair. I don't want to wake him for that. It only gets hard doing it often. It starts hurting my arms and left leg because of weakness. My solution was to cut my fluid by about 80% which I knew was a bad decision, but then, I'm not known for my good decisions. Seriously though it is already getting harder to drink just water. I'm starting to struggle with fluid intake chair or not.
The shower, a simple shower is what wipes me out. We just have a stand-up shower in our room. Shower time sucks ass, but at least it doesn't stink. First I have to make the big decision of what to wear to get back in bed. Then tony takes shower doors off, makes sure my shower chair is clean and warm by running hot water on it. he gets my washcloth, soap, shamppoo, conditioner, razor shaving cream and a towel on holder to wipe my face if needed. This all must be put back nicely after shower in case of a house showing. The last thing is getting my little faithful helper's towel folded for her. She sits in there in that steamy room just in case something goes wrong. She's so sweet. All 7lbs of her, my tough little toy poodle, Abby. Then Tony closes the door, puts baby moniter right outside and goes to office til I'm finished. I'm still washing my own hair and body completely by myself. That may not seem like a luxury to you, but it means the world to me.
After shower, is body lotion, hair, and make-up if leaving. Tony reasembles the bathroom, shower doors and all. Then I'm completely wiped out and back to the bed Tony always has fixed and fluffed for me. I make it back and I tell abby all my secrets and fears. I love her so much.
That's the story of my last dance with indepenence.
Until next time, take care,
April
[subscribe2]
This is the story of me hanging on to some independence. Since I can no longer walk, I use my transfer chair to go from bed to shower, toilet, and vanity sink where my husband is getting used to blowdrying my hair, and we're starting on make-up. I've always kept it simple so he won't have to learn false lashes and the smoky eye. If he makes a mistake with eyeliner he can smear and we'll call it a smoky eye. Of course he'll need to do the other eye just so. I'm still managing all this stuff on my own but I feel the weakness more and more. Those make-up brushes sure are getting heavier.
I got the transfer chair the same day I got the rollator from my lovely local ALS coordinator. The chair was to stay in the trunk just in case we ended up somewhere with a lot of walking. I remember saying to myself, "it will be a long time befrore I ever need that." For those who don't know, the difference between a transfer chair and a wheelcair is the transfer chair has four small wheels. You can't push wheels with your hands like a regular wheelchair.
The first time it was pulled out is when I broke my toe, you guessed it, trying to walk. I broke a middle toe on my good side. I spent about 10 days relying on this chair. If somebody pushes you to the middle of a room, you're stuck. Nothing to grab on to to pull yourself. The thought of that bothered me. I tried to keep my cane with me to latch on to things just in case. Now I can use my left leg for support transfering, but then I couldn't put any weight on it. this was about five months ago. Once I was in the chair I pulled myself using the bed, doors, anything I could. Now I can use my left leg to help get on and off, but I can tell a huge difference in my arm strength. more so right than left as usual. The comforting thing about using the chair then was knowing it was temporary. I knew as soon as I could bare weight on that foot again I'd be back in action. I was.
Here I am now with that chair being, what I feel is my last dance with independence. I have a love/hate relationship with it. Anybody is welcome to sit in it when visiting me as long as they put it back in my reach right away. I still don't leave the walls of my bedroom/bathroom. I only get glimpses of the house I used to scurry through with ease. I get that as I'm being carried fireman style down to the garage door.
Tony is worried about me, which I appreciate, but frustrates me. I'm usually up all night. as soon as I think he's in the deepest sleep ever I twirl on my left foot into the chair from bed and start pulling with arms and scooting with left foot to piss. Damn near every time, he sits straight up, "What are you doing? You're going to hurt yourself, I asked you to wake me up!" I don't want to have to wake him up. A simple piss is the easiest thing after making it to the bathroom, I just swirl on toilet. when finished I swirl back on chair. I don't want to wake him for that. It only gets hard doing it often. It starts hurting my arms and left leg because of weakness. My solution was to cut my fluid by about 80% which I knew was a bad decision, but then, I'm not known for my good decisions. Seriously though it is already getting harder to drink just water. I'm starting to struggle with fluid intake chair or not.
The shower, a simple shower is what wipes me out. We just have a stand-up shower in our room. Shower time sucks ass, but at least it doesn't stink. First I have to make the big decision of what to wear to get back in bed. Then tony takes shower doors off, makes sure my shower chair is clean and warm by running hot water on it. he gets my washcloth, soap, shamppoo, conditioner, razor shaving cream and a towel on holder to wipe my face if needed. This all must be put back nicely after shower in case of a house showing. The last thing is getting my little faithful helper's towel folded for her. She sits in there in that steamy room just in case something goes wrong. She's so sweet. All 7lbs of her, my tough little toy poodle, Abby. Then Tony closes the door, puts baby moniter right outside and goes to office til I'm finished. I'm still washing my own hair and body completely by myself. That may not seem like a luxury to you, but it means the world to me.
After shower, is body lotion, hair, and make-up if leaving. Tony reasembles the bathroom, shower doors and all. Then I'm completely wiped out and back to the bed Tony always has fixed and fluffed for me. I make it back and I tell abby all my secrets and fears. I love her so much.
That's the story of my last dance with indepenence.
Until next time, take care,
April
[subscribe2]
Monday, April 1, 2013
Life Must go on...
I'll first start with, I hope everyone enjoyed Easter holiday whether it be because of a three day weekend or a great church service. I enjoyed some great food with some family.
What I mainly want to share in this post is that not all things in life change because you're terminally ill. It is really hard on a relationship. It can destroy them. Many say it can bring you closer together. I think that is about as true as someone saying having a baby will make their relationship better. I believe a true and stable foundation must be there to begin with.
I've been with my husband 20 years, married 10. We know each other as well as (in some cases better than) we know ourselves. Over the years we've been through some extremely tough times. We've had disagreements and knock-down drag-out arguments while dealing with them. If not, something would be wrong. If you've been in a relationship over 2 years and can say, "We've never had a single argument," You might want to reevaluate the health of your relationship. Keep in mind, I'm talking about an argument, a heated debate, not physical or emotional abuse. but we have always came out the other side together. That's the important part. We walk out hand in hand together.
The thing about dealing with a terminal illness with your partner is knowing that only one will be walking out of the other side. For us, that is never forgotten. It tends to be all the more distressing. One thing I consider an important part of our longevity is we're honest with each other. As we all know, sometimes the truth hurts. It's a necessary hurt and reminder this needs to be dealt with. With all the reminders of my death we have started tip-toeing around each other. He doesn't want to have to live on with a memory of saying something in the moment that hurts me. I don't want to put any undo pressure on him when I know he's trying and struggling.
This leads to a build up of fear, frustration, anxiety and anger. That's what happened to us yesterday. It all becomes so much and then comes the explosion, and everything you've been trying to avoid comes out ten fold. We'll survive it, but it could have been avoided. at least the intensity of it.
My words of wisdom as the dying person in a relationship is don't change your core relationship style. You're both still the same people no matter what, and you both need permission from each other and yourself to be yourselves. No matter what, life will go on. It's up to you and your partner whether it goes as you want.
That's all for now. I will be adding more to the site. It may not be as soon as I would like, but I will make it happen.
Until next time, take care,
April
[subscribe2]
What I mainly want to share in this post is that not all things in life change because you're terminally ill. It is really hard on a relationship. It can destroy them. Many say it can bring you closer together. I think that is about as true as someone saying having a baby will make their relationship better. I believe a true and stable foundation must be there to begin with.
I've been with my husband 20 years, married 10. We know each other as well as (in some cases better than) we know ourselves. Over the years we've been through some extremely tough times. We've had disagreements and knock-down drag-out arguments while dealing with them. If not, something would be wrong. If you've been in a relationship over 2 years and can say, "We've never had a single argument," You might want to reevaluate the health of your relationship. Keep in mind, I'm talking about an argument, a heated debate, not physical or emotional abuse. but we have always came out the other side together. That's the important part. We walk out hand in hand together.
The thing about dealing with a terminal illness with your partner is knowing that only one will be walking out of the other side. For us, that is never forgotten. It tends to be all the more distressing. One thing I consider an important part of our longevity is we're honest with each other. As we all know, sometimes the truth hurts. It's a necessary hurt and reminder this needs to be dealt with. With all the reminders of my death we have started tip-toeing around each other. He doesn't want to have to live on with a memory of saying something in the moment that hurts me. I don't want to put any undo pressure on him when I know he's trying and struggling.
This leads to a build up of fear, frustration, anxiety and anger. That's what happened to us yesterday. It all becomes so much and then comes the explosion, and everything you've been trying to avoid comes out ten fold. We'll survive it, but it could have been avoided. at least the intensity of it.
My words of wisdom as the dying person in a relationship is don't change your core relationship style. You're both still the same people no matter what, and you both need permission from each other and yourself to be yourselves. No matter what, life will go on. It's up to you and your partner whether it goes as you want.
That's all for now. I will be adding more to the site. It may not be as soon as I would like, but I will make it happen.
Until next time, take care,
April
[subscribe2]
Subscribe to:
Posts (Atom)