So finally today I feel as though a human still resides within this body. The last few weeks have been filled with a tired mind, body, and soul. So much so, that I haven't even logged on to check emails... Yikes I say!!!! Anyone who knows me, knows this is huge. The constipation issue, brought on; limited food for a week and a continous weakening overall.
The lightheadedness is an insignificant symptom compared too the numbness of my tongue and throat. I told Rodney yesterday, how ironic it would be if my voice was lost. The one who talks the most should lose the ability to speak.
It has been an incredibily hard couple of weeks. My children are at odds with themselves. They want me to get up and be better. Jordan is acting "crazier" in school. He has had such a stellar year, his teacher doesn't know what to do. Out of the blue, he walks into class like another kid. He grieves for me and doesn't know how to vent his feelings to let others understand. I am what you would call a translator.......
I do worry for him when i am no longer here. I hope I get enough things in order for him so he transitions decently.
Joce on the other hand is going to be lost....... She is soooo attached, I really do feel my heart break at the thought of not being here for her. She told me tonight "when I go to college, will you cry"? I said yes. True. Even if its from above. Not much tonight as I have been sitting too long and need to lay down.
More soon.
B & L
T
28.3.07
18.3.07
A Sunny Sunday
My clinic appointment Friday went extremely well. I have lost 12.8 pounds and my breathing is back to 82 up from 74 in October. Even though my left leg is declining and now my back is getting increasingly tired and fatiqued, my overall evaluation was stellar. My friend Carmen took me so she could experience clinic for her grant writing position with the ALS Association from a caregiver's perspective.
So Saturday, March 17th 2007, St. Patrick's Day around the world, will be a day engraved in Carmens mind forever. The green clover day will never be experienced without a memory of me in it for her. Yep, it was that kind of moment. I did not say day, because the "day" was great. She picked me and the kids up so Joce could interview John for yet another 1st grade project at 10am. We arrived to the Police station and got ready for my reporter to conduct her interview, but alas I have been drinking so much water to deal with a constipation issue that I needed to pee. So I made them wait, I had to video the interview so we could make sure we got all the necessary info for this damn project. I knew missy wouldn't be able to write everything down that John would say and basically I wasn't taking notes......
So, Carmen took me to the restroom. Feeling strong and enthusiastic I felt I didn't need the handicap bathroom with the rails on the walls. Stupid, stupid, stupid. I couldn't get my arse off the toilet!!!!! Yes, it was great. At one point I was laughing so hard, I nearly fell off the damn thing. finally with the wheelchair positioned directly in front of me I leveraged myself to a stand with Carmen holding the chair in place.
She had to pull up and place my thong (I don't wear full panties any more due to the fact I can't get them out of my ass when they ride up). Then she got my pants up. It was by far another vanity check for me. It was quite something to realize I had no choice, and thankfully she was my friend and apparently wasn't too freaked.
Never again will a bathroom unequipped with hand rails be used, unless of course the only other choice is to pee my pants. But I will not be able to get off alone...... Note to caregiver, friends and family, keep Tami near accessible bathrooms at all costs.
It was a good day.
My potential renters emailed today. They want the house, but won't know for sure about their finances until June. Do I wait, or do I advertise???????
I will meditate on this one. It will work out the way it is supposed to, I do believe there are no mistakes.
B & L
T
So Saturday, March 17th 2007, St. Patrick's Day around the world, will be a day engraved in Carmens mind forever. The green clover day will never be experienced without a memory of me in it for her. Yep, it was that kind of moment. I did not say day, because the "day" was great. She picked me and the kids up so Joce could interview John for yet another 1st grade project at 10am. We arrived to the Police station and got ready for my reporter to conduct her interview, but alas I have been drinking so much water to deal with a constipation issue that I needed to pee. So I made them wait, I had to video the interview so we could make sure we got all the necessary info for this damn project. I knew missy wouldn't be able to write everything down that John would say and basically I wasn't taking notes......
So, Carmen took me to the restroom. Feeling strong and enthusiastic I felt I didn't need the handicap bathroom with the rails on the walls. Stupid, stupid, stupid. I couldn't get my arse off the toilet!!!!! Yes, it was great. At one point I was laughing so hard, I nearly fell off the damn thing. finally with the wheelchair positioned directly in front of me I leveraged myself to a stand with Carmen holding the chair in place.
She had to pull up and place my thong (I don't wear full panties any more due to the fact I can't get them out of my ass when they ride up). Then she got my pants up. It was by far another vanity check for me. It was quite something to realize I had no choice, and thankfully she was my friend and apparently wasn't too freaked.
Never again will a bathroom unequipped with hand rails be used, unless of course the only other choice is to pee my pants. But I will not be able to get off alone...... Note to caregiver, friends and family, keep Tami near accessible bathrooms at all costs.
It was a good day.
My potential renters emailed today. They want the house, but won't know for sure about their finances until June. Do I wait, or do I advertise???????
I will meditate on this one. It will work out the way it is supposed to, I do believe there are no mistakes.
B & L
T
6.3.07
Another Experiment
My neuro doc has requested my spinal fluid..... How do you say no to that one??? Considering I am one of only a handful (living) with the SOD1 mutation, the type of ALS that runs in families. Add to that I am the genetic carrier for Down Syndrome, of which my son has. Both genetic dysfunctions happen to appear on the 21st pairing of chromosomes, puts me in some what of a freakish category.
They want to study my plasma to try and determine if a link between the two can be found. If so, genetic altering in the future maybe a solution for high risk individuals. My daughter also is a genetic carrier for Down Syndrome. I found this out while pregnant with her after an early amnio revealed results.
I still remember the day October 15, 1999. It was 5pm on a Friday. I couldn't wait any longer and called the Dr.'s office one last time in hope that an answer would end my racing mind.
He said, yes Mrs. Kidd, your baby is going to be fine, however is a carrier and shares your same genetic makeup. I knew then, the baby was the girl I had always dreamed of having.
She has a 50/50 chance of also having the SOD1 mutation. She can not be tested until she is 18.
I am doing the best I can by leaving enough information behind for her so that she will understand (if that's possible for anyone) what her genes mean. I pray that by the time she is ready to start a family that genetic altering will be a common practice so she will not have to face a decision that I was going to make. I already had one child with Down Syndrome, I was not willing to have two.
I made my mind up early in the pregnancy that if the results were positive, I would terminate the pregnancy have my tubes tied and never have to face this horrible life altering decision again. But the Divine had other plans for me and mine. I recieved a precious daughter, who loves me endlessly and sadly enough will loose me long before I am ready to say goodbye.
I developed symptoms while pregnant - over 7 years ago now. I struggle with the fact she never knew me well. We never got to run through the sprinkler together as Jordan and I did when he was younger.
So this all brings me back to my appointment on friday. Yet another procedure that won't heal, help or bring hope to my immediate future. Only the possibility it may save my daughter. I told my husband yesterday that I didn't care if they ripped my arms from my body if there was a chance she wouldn't have to experience this disease.
An extreme analogy he says..... but truthful. I would and will die for my children, to keep them healthy, safe and alive.
After all what's one more spinal tap at this point.... I have already had 4. Gross. Life continues, and we must be grateful and thankful each day we get the opportunity to wake up and enjoy it!
B & L
T
They want to study my plasma to try and determine if a link between the two can be found. If so, genetic altering in the future maybe a solution for high risk individuals. My daughter also is a genetic carrier for Down Syndrome. I found this out while pregnant with her after an early amnio revealed results.
I still remember the day October 15, 1999. It was 5pm on a Friday. I couldn't wait any longer and called the Dr.'s office one last time in hope that an answer would end my racing mind.
He said, yes Mrs. Kidd, your baby is going to be fine, however is a carrier and shares your same genetic makeup. I knew then, the baby was the girl I had always dreamed of having.
She has a 50/50 chance of also having the SOD1 mutation. She can not be tested until she is 18.
I am doing the best I can by leaving enough information behind for her so that she will understand (if that's possible for anyone) what her genes mean. I pray that by the time she is ready to start a family that genetic altering will be a common practice so she will not have to face a decision that I was going to make. I already had one child with Down Syndrome, I was not willing to have two.
I made my mind up early in the pregnancy that if the results were positive, I would terminate the pregnancy have my tubes tied and never have to face this horrible life altering decision again. But the Divine had other plans for me and mine. I recieved a precious daughter, who loves me endlessly and sadly enough will loose me long before I am ready to say goodbye.
I developed symptoms while pregnant - over 7 years ago now. I struggle with the fact she never knew me well. We never got to run through the sprinkler together as Jordan and I did when he was younger.
So this all brings me back to my appointment on friday. Yet another procedure that won't heal, help or bring hope to my immediate future. Only the possibility it may save my daughter. I told my husband yesterday that I didn't care if they ripped my arms from my body if there was a chance she wouldn't have to experience this disease.
An extreme analogy he says..... but truthful. I would and will die for my children, to keep them healthy, safe and alive.
After all what's one more spinal tap at this point.... I have already had 4. Gross. Life continues, and we must be grateful and thankful each day we get the opportunity to wake up and enjoy it!
B & L
T
4.3.07
It's March.... I am, will U?????
I can't believe March has arrived. Time seems to be flying by as my body is growing very tired. I knew this disease would speed up when, when I slowed down. Afraid to sit for very long has kept me energized thus far. However, my body is now not complying. The less active I have become, the harder it is to move. I watched the movie "Million Dollar Baby", again last night. So sad. I feel her pain and frustration of laying in a bed unable to move. And as she begs "boss" (Clint Eastwood) to help her die. I have had the same conversation with Rodney. He says he will do whatever I ask. I decided the day my mother died that I would not be hooked to any device to prolong my life.
While I do believe my mind is stronger, it is not strong enough to live inside a paralyzed body. I have a machine called a Cough Assist that pushes air into my lungs to keep them from collapsing. I should use it everyday. I do not. Purposefully. I want my body to die all at the same time.
I don't want to breathe if my body can not move. I do not want to move if i can not breathe on my own.
I will continue to March to my drummer as i always have.
On a lighter note, the renters from San Diego will be here Thursday to view the house..... I am so excited. I know they will love it, who wouldn't?!!!!!
I have found so many great housing communities, it is thrilling me to "pick" my families next house.
Breathe like you mean it. Feel the precious air fill your lungs and be grateful for another day to share your life with the ones you love. I do.
B & L
T
While I do believe my mind is stronger, it is not strong enough to live inside a paralyzed body. I have a machine called a Cough Assist that pushes air into my lungs to keep them from collapsing. I should use it everyday. I do not. Purposefully. I want my body to die all at the same time.
I don't want to breathe if my body can not move. I do not want to move if i can not breathe on my own.
I will continue to March to my drummer as i always have.
On a lighter note, the renters from San Diego will be here Thursday to view the house..... I am so excited. I know they will love it, who wouldn't?!!!!!
I have found so many great housing communities, it is thrilling me to "pick" my families next house.
Breathe like you mean it. Feel the precious air fill your lungs and be grateful for another day to share your life with the ones you love. I do.
B & L
T
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