Tests, Doctors and Results

Today was one of those days I usually despise and for good reason. 9:15 am ( I'm mot a morning person and have never been) Went to a really nice Dr. to talk about My Thyroid nodule, He said its nothing to worry about.

At 11:00 am we went for my Barium swallow, all I can say is that the test didn't look perfect. As I swallowed different thicknesses of Barium, which were all sickeningly sweet and chalky, from a honey consistency to a cracker with Barium spread on it and every thickness in between. It wasn't as bad as the needle and shock test, but I gaged on the pudding consistency. Every time I swallowed, the Dr and Speech Person would say "look, she gets most of it down the right pipe, but a small amount is going down the wrong part" or something like that. It lasted for 15 minutes or so. The bottom line is: Get a feeding tube put in while you still have your health, don't Wait until the last minute. So I'm in the process of scheduling that right now. I don't have to use it, just have it in place in case I wake up one morning and can't swallow anymore.

Then Larry took me to lunch at the Main place Mall food court. Because it was close to our 2:00 pm Dr. appointment with Dr De Silva. We had some time to kill so we went into Penny's Store and bought me 6 pair of "pull-up" old ladies slacks. Yep, I'm now officially Grma Irene!

When we got to Dr Desilva's office, he told us the genetic test was back. SO.....I do not have the common familial kind of SOD1, but I have the rarer kind of familial kind known as FUS, leave it to me to have the RARE kind of ALS!

Thick it

My swallowing is not good with thin liquids, in fact I choke almost every time I drink water! I used to drink about a gallon of water a day, simply because I love water, but since I got sick, I'm lucky to get a small water bottle down!

I have always taken pills by throwing them into the back of my throat and then guzzling water to wash them down, my record was 10 pills at one time, but no more! I was struggling to get down 1 pill at a time and choking every time I took a pill. This is not fun.

Then Larry bought me "Thick-It". At first I told him I don't need that yet. But he asked nicely if I wouldn't try it in some water. So I did!!!!!!!!!!!!!!!!!!!!!!!!! To my surprise it really has no taste and no gritty granules. It just made the water the perfect consistency for me to be able to swallow! Now I am a believer in this stuff, and I won't leave home with out it!

At today's assessment here is how I stand: My left hand continues to loose mobility every day a little bit, it is atrophying or clenching up on me and frustrates me when pulling up my pants.
I still can eat everything under the sun, but I'm slower at eating and sometimes I have to hold a napkin over my mouth because it seems like my tongue doesn't move the food around correctly. My legs still work well and so does my right hand, that is how I'm typing this blog. My speech has plateaued, but at night, when I get tired, I slur more. My end take on life right now it: Its GREAT!

Special People in my life

Wow! We just got back from a wonderful trip! We went 1st to Mt Rushmore, then to Custer's last stand, then to Deadwood where Wild Bill Hitchcock was killed, then we went to Yellowstone National Park. What fun that was.

Some sweet people in my life surprised me when we got home. See my bungied hair dryer below? Great idea, but it always had to be adjusted!
Now look what was waiting for me when I got home!

Whoever did this was really thinking of me! I didn't even know these existed! I have had so many nice cards from so many wonderful people, a HUGE thank you to all who have sent cards of hope and love and those who have given me gifts and those who are going the extra mile in service! You are making my life so much more bearable as I loose my left hand and now my left arm is pretty much useless, the only thing can do now is to walk and swing it. My swallowing seems to come and go right now. The worst thing to drink is water, which I used to drink a gallon every day, not any more! I can still eat, but I don't know how long that will last, I hope until Christmas!

The Nodule

Well, we had the report faxed to us, it looks as if the nodule in question is only 1 cm large, that's not anything to get excited about. We have also checked with a doctor we know back in Brea. He told us, and the internet confirms, that it is not unusual for adults in their 50's to develop nodules on their thyroids. We will check it out when we get back home from our trip. I still have ALS. Oh Well.

Your not going to believe it

We called the Dr. about the Chest CT scan results, he said "It showed a nodual on your Thyroid". OK, what does that mean????????????????? Stay tuned for further info!

Medical update

Today has been an amazing day- my sinus isn't running non-stop! I only used 2 tissues all day! I also had my chest CT Scan today, we get the results tomorrow. I will let you know the results ASAP. They really don't expect to see anything, they are still ruling out other possibilities, this is just in case there is a tumor somewhere.

My left hand continues to deteriorate, but no complaints from me, I'm right handed. And now that I have my blow dryer bunge corded to my pull out mirror, I can still do my own hair!

I still have 2 tests to go, 1 is a Sinus CT Scan and the other is a Berrium Swallow test.

We still have not heard if I have the SOD1 kind of ALS. That's what they think I have, it is the familial kind and supposedly very aggressive, but the pills Rylotek and Pyridostgim have seemed to slow down my disease, at least I had A great day, of course any day without snot would be a down right joy!

Fast Sunday

Wow! what a day today has been. I went to 2 Sacrament meetings, one in our home ward and one in the Singles ward. I bore my testimony in both wards to thank everyone for their prayers and fasting. The whole day has been very emotional. A couple of the Single sisters brought me Sunflowers and I got the sweetest notes from several different people today that brought me to tears. Different people have stopped by and spent time with me today. I am going to publish my Testimony. And then I got e-cards from some of my old genealogy buddies.

My Dear Brothers and Sisters,
I am humbled and thankful for your prayers and fasting. I feel the strength that comes from on high from sincere prayer and humble fasting. I love you all. You have always been supportive examples to me.
Of course I come to bear my testimony today expressly because I am going through the last trial of my life. I couldn't do this without knowing a real relationship with our Lord and Savior, Jesus Christ.
We do not know what trials we will be called to walk through in this life, only that no person is exempt from trials, that’s what we came here for, not to live in a place where we are rested and life goes along as if we were already living in Heaven, as I was doing before ALS hit me. Somehow I knew that was too good to last, seriously, remember how happy I was? Throughout my life I have had many trials, it started in childhood with a dysfunctional family that I was born into, but I conquered that with constant faith that the Lord was always in charge. The secret to getting through this life is to never lose faith. If you have true faith, you will never walk alone. And the only way to develop faith is through trials.
Faith is not a passive word either. Joseph Smith said that “Faith is the 1st principal in revealed Religion, and the foundation of all righteousness and that it is also the principal of action in all intelligent beings”.
Elder Bednar said that you can boil Faith down into 3 words: Assurance of things hoped for (plant the seed and try to believe), evidence of things not seen (look for ways that your prayers are answered, even if it wasn’t the answer you expected or wanted) and action (pray as if you had no talents or bodies, turn everything over to the Lord and live to receive personal revelation). I have and that is why I will be happy through this trial and try to keep a sense of humor.
I KNOW God lives, I know He loves me, I know I must be a special Spirit to have gone through a lifetime of trials and finish that way. I pray you will all be especially blessed for the love and service you have given me and that you will strengthen your faith for the trials you will someday face.
I say these thing in the name of my Lord and Savior, Jesus Christ,