To Breathe or Not to Breathe

People with ALS (PALS) , at some point  wonder about their mortality,   how the disease will  "take them". Will it be lack of ability to breathe? Or  are other organs going to shut  down? Or a heart attack? It's odd to have a fatal disease but not know how, or when life will end.
That's the natural order, we are not supposed to know.  The fatality of ALS is 100%, but those are the percentages for everyone on this earth.  Psalm 139:  16.  your eyes saw my unformed body.  All the days ordained for me were written in your book before one of them came to be.   Our responsibility is live each day with love for one another,   grace and mercy.   Relying on  the knowledge that God has a plan for each one of us and we can trust the plan is good.   That's enough preaching, .

  As a person with ALS, breathing is eventually an issue. The lungs can be healthy and strong but the muscles surrounding the lungs are weakened by the disease. The diaphragm is  the primary organ for breathing,  also weakened by ALS.  If the diaphragm can still respond to some electrical stimulation there  is a  new procedure that will prolong or negate the need for an invasive tracheostomy. The NeuRx Diaphragm Pacing System (DPS) passed FDA approval (9/11) as a  non invasive procedure that will supplement a non-invasive BiPAP breathing system. http://alsn.mda.org/news/neurx-diaphragm-pacing-system-approved-als
 Unfortunately it was not an available option when I  needed it.   When your  lungs/diaphragm are
 strong you are a good candidate for ALS trials. Once they go, you don't qualify for many.  My plan was to   participate in a trial, I was positive that was my purpose, to be part of the solution.       .

My Story:
In late '07 I had my usual appointment at UCLA. It was very uneventful and my lungs were still good, voice still strong. I get my first case of pneumonia.

Halloween '07. I have a tradition of cruising the neighborhood with the kids, checking out the sights, visiting with the neighbors. This was my first year in my wheelchair, with my monster size glass of cabernet and my blinking spider headband, no gloves (stupid). FINGERS WERE FREEZING but I was not going to stop my annual ritual of wine tasting with the neighbors. Within weeks I started with a never ending cold. By January the pneumonia set in and  my breathing was affected. February we realized my breathing was not going to improve. We treated the pneumonia at home with a home health care agency administering iv's. My room had to be freezing for me to be comfortable,  my poor family had to wear gloves and coats in their own home to keep  from getting sick themselves. The family all thought this was the end, I was unable to get a deep breath, unable to sleep because I couldn't get enough air in my  lungs and unable to eat because I could not get enough  breath  to chew. This was the first scare of a few. No air is a scary feeling. Ashton left a soccer  scholarship in Hawaii to come home and be with me. I  was thrilled to have the kids close, but not thrilled about her decision to stay and not go back to Hawaii. When she makes up her mind about something there is no arguing. An ocean is just too far away. But there was  immediate relief   once we knew the right questions. The next step when your breathing weakens is a non-invasive B-pap machine, this is also used for people with sleep apnia. RESPIRONIX is a   good supplier. There are many designs  and you must do trial and error to find one that fits. This method works very very well. Once I started getting air I got better quickly and we were able to warm up the house. With a B-Pap I was able to eat and drink as long as I could open my mouth long enough, and hold my breath,  to  chew and swallow. Diet became very important. I had lost a lot of weight from being sick, that's not good. Wanda and I  became obsessed with getting enough calories in me with the least amount of effort on my part. Food still needed to be organic. I had been eating organic for so long I was not going to add processed food now. We became juicing experts. That was great for a while but my ability to eat was beginning to get harder. Not in drinking or chewing, but holding my breath long enough to get enough food in me.

The time came when we were faced with THE BIG DECISION. To get a feeding tube and tracheotomy? It was recommended that I get the tracheotomy sooner then later. The feeding tube was easy but if we were going to do one, we should do both. The g-tube was done 8/14 and the tracheotomy 8/15.
HAPPY 4TH Anniversary!
I want to share with you some of the trials we have experienced having a trachea put in but I will do that in the next post.

The feeding tube is the best invention ever!   EVERYONE should have one.   No obesity and I don't really miss food.   I still watch Food Network and I don't mind people eating in front of me. Eating is now a no-brainer. The only time I miss a certain food is when it is close to eating time.

That's  enough for tonight. Getting an invasive breathing apparatus is a life changing event,  not to be taken lightly. I have no regrets for doing it, It has prolonged my life 4 years,which I am thankful for.

Things That Crawl in the Night

My Quadriplegic nightmare

 

Ever since a little girl I have been wary of bugs. I love snakes but creepy crawlies, never.

Maybe it was too many Twilight Zone episodes. Tiny 6- legged creatures nesting in my nose or ears has been a key scenario in my terrified, head under the covers nighttime ritual.  If camping, I am the one burrowed down low with the zipper all the way up and the drawstring tight. 

I know that there are many of you that share my squeamishness, whether you admit it or not. Once I lost my mobility, my fear turned into terror. If there was a spider in my room, it was soon to be dead. Sorry, I am not a believer of sparing the lives of creepy crawlies.

Summer of 2010 there was a spider nest in my bedroom. We didn’t know until one night several babies were making their first solo flight down from the ceiling, right over my head. Luckily Steve was here and could see the frantic look on my face, followed my eyes upward and saw the mini-brigade of dive bombers.  He called my son in, because killing things is a guy thing. They assembled their weapons from a golf club and my walking stick and attacked the ceiling. I still have the marks above me to remember that fateful night.

Well, it gets worse. A few weeks ago I had a run in with an earwig. I never thought they could hurt people but I learned otherwise. Half asleep I feel creepy little legs on my cheek.My caregiver is asleep and I don’t want to open my mouth, or move for fear it will walk into my mouth. I feel the body intruder walking across my face.Skinny little legs just cruising along my cheek. If I knew how to close my nose and ears, I would have. Visions of Twilight Zone filled my head. Then the movement stops and I figure it’s going to go away. No,I feel and hear it CHEWING on me. CHEWING!! It seemed forever but was just seconds I imagine. Talk about feeling helpless. So, I just waited until it sated its thirst. Once it was full it walked it’s creepy little legs down my face. I didn’t feel it anywhere else so it must have gone somewhere to digest it’s big meal.  Chewing!!

The next day I awoke with nasty bite marks on my cheek. When Wanda changed my sheets we found the bloated earwig snoozing between the sheets. Boy that sucker did not want to die.  She pinched and pinched, he squirted out a lot of my blood but still didn’t die. The only burial for it was the porcelean flusher, it was going to a watery grave.

Sorry to those of you that believe in preserving ALL life. As a completely dependent, immobile, defenseless human, I will show no mercy to creepy crawlies.

 Zoom in on the sucker

Scars of Proof

Below are the pictures of 

Miracles and More

Hi friends,
I have been working on a post for 2 months and it just ain't coming together. So I decided to set it aside for a bit and share with you some other things that have been going on recently.  Below is a piece I entered into a contest last month. It was to be spiritually based and could be a testimony or story. I did not make the cut but I really enjoyed doing it. There will be more contests. I am anxious for your opinions so don't be shy.

Miracles and More 

Hindsight is 20/20.  An employer said that to me over 15 years ago and it stuck with me.

7 years ago I was diagnosed with ALS, aka Lou Gehrigs. I am 52, a quadriplegic and on life support, I have had time to reflect and see God’s hand directing my life. People say God doesn’t do miracles in modern times. That’s just not true! You have to open your eyes and quiet your mind, you will see them. By the way, I am typing with my eyes, miracle! 

Have you ever had a task or an event you were trying to accomplish and every way you turn you hit a wall, an obstacle? That’s God telling you it’s not His will; time to change course. God wants what’s best for us and He knows before we do. If we don’t obey, He will make us obey!

I have a great family, 2 wonderful kids, a loving husband, but God was not first, more like last. I was in control and I could fix any issue that came my way. I am surprised He didn’t give up on me; never forsaken, just like He promised. God gave me several hints that my priorities were not aligned correctly.

We moved to a small valley north of Santa Barbara when the kids were 4 and 9, for a more wholesome upbringing. As a family we were active in the community. Both kids were enrolled in Christian schools, not because of our faith but it was a better education. This is a faith based community, all faiths. When I got sick the whole community came to help and 7 years later they still are.

God didn’t cause the ALS but He allowed it and He can miraculously cure me but I have some serious refining still to do. The Lord has tested me, changed me, opened my eyes and heart, and He isn’t done yet.

Our friends organized a ministry. The “Meal Angels” are a group of families that bring us dinner twice a week; they have been ministering to us with meals for almost 4 years. My girlfriends come every week to chat and read, these are angels that God placed in my life. Medically the Lord made sure I was surrounded by the best doctors and caregivers. When I started to need help at home He brought me Wanda. A solid Christian woman that has been with me now 5+ years, has journeyed with me, adapting as my body deteriorates. My other caregivers are all very spiritual, surrounding me the Word and the Love of the Lord. The biggest miracle God gave me was my husband. Only He would have known that Steve would be the right man for me in times like we are going through now, 25 years later. He has taken care of us, even financially. Two family members passed and even though we miss them and wish they were still with us, the money they left behind came at a time when we didn’t know how we were going to afford the looming medical expenses. So many miracles! My Lord has a plan, the plan is good and it is not done. Miracles are always happening, whether it is obvious or the subtle transformation of my mother, husband and children coming closer to God. Miracles are alive and well in these modern times. We just need to be quiet, watch and listen. Hindsight is 20/20.