NieNie

As I picked up the copy of LDS Living, I noted that NieNie was on the front holding her newest baby, Charlotte. I subscribe to NieNie's blog and I've read her book, Heaven is Here.  I was interested to see what she said.  The contrasts in our lives: I have raised all my children, she has yet to raise hers; I have little to no pain, she lives with pain every day of her life; I have a terminal disease, she is at the prime of  her life. And yet we have much in common in dealing with the challenges we both face.

She wrote:
 "There is a divine purpose in all that we do. We can be grateful for what we have and make it into something better. We can gain strength from our experiences rather than dwell on how horrible they were. There is a loving Heavenly Father who wants us to grow from trials and it's up to us to do that. We have all been given the tools and more to get through anything that comes our way."


And this:
"I am so much more than a human going through some problems. I am a daughter of God getting through with God's love and help."


I needed this perspective coming off the cold I just had. She's so inspiring!

Cold: Kicking My Trash

I have a cold for two weeks; in fact I missed Church for two weeks in a row! That's unheard of for me. But when you have a cold, and you don't have muscles to cough, it's an impossible situation.  I went to the ER twice to get suctioned out. I'm feeling better now, but I still get mucous in my throat.

Rich is my hero; he went online and ordered everything that would help in getting the mucous out of my throat.   So far, the drops called Mucous Clear are working well.  And papaya enzymes. So far what works is sticking my finger down my throat (I have no gag reflex any more) and just pulling the mucous out. It's disgusting, but it works!

MicKey

I'm the proud of owner of a new feeding tube!  It's called the MicKey and it's more low profile than the last one with the tube attached.





They just pulled the old one our and put the new one in. According to Rich who was in the room, it made a loud popping sound and there was some blood. It hurt but just for a second.  The MicKey is kept in place by a balloon that it filled with water.

Unfortunately, two days after I got it, the ballon deflated and it came out. Rich rushed me to the hospital and they easily attached a new MicKey.  Of course, my stomach contents came pouring out of the hole. By the time I got to the hospital I was a wet mess.  They put a bigger size in and so hopefully it won't happen again.

I did it!

I learned how to feed myself through the tube!  I'm so glad because I don't have to count on other people to do it for me.  I like being independent!

PEG

On Monday I was the proud recipient of a PEG feeding tube. PEG stands for percutaneous endoscopic gastrostomy. Basically it's a feeding tube in my stomach.  The doctor put a scope down my mouth and punches through from the inside, thank goodness, I had IV sedation!  The good news is that it allows me to get plenty of water without choking.  I can also do food (it's a baby-type formula that comes in cans). Unfortunately, with my weak hands I can't really do it by myself.  My daughters and husband have learned how to do it and they are so kind to help me. I've spent the last week recuperating from the surgery and the subsequent gas pains (they fill you with gas to do the procedure). I can still eat the normal way which is good.  For the curious among you, here's what it looks like.

from the inside

this tube hangs down but eventually I can change it for a flat button type one.

What ALS Cannot Do

This thought was shared from a friend of Rich's that he went to high school with.  Her mother recently died of cancer.  I switched the word cancer for ALS:

ALS is so limited….

It cannot cripple love

It cannot shatter hope

It cannot corrode faith

It cannot destroy peace

It cannot kill friendship

It cannot suppress memories

It cannot silence courage

It cannot invade the soul

It cannot steal eternal life

It cannot conquer the spirit

Thanks, Kathy!

Two More Inconveniences

In my last post I forgot to mention to more inconveniences of my disease:

Yawning ~ seriously, once I start yawning there's no stopping. Both neurologists that I saw asked me if I yawned - so it must be a symptom.

Inappropriate laughing/crying/smiling ~ It first started when Michael was leaving on his mission. I would cry and just couldn't stop. I was happy he was going to serve a mission and I couldn't figure out why I couldn't stop crying. Now I recognize that it was part of the disease. I also sometimes laugh or smile at inappropriate times and I can't seem to control it. It is a symptom of the disease. So if you catch me laughing, crying or smiling when it seems out of character, just know that I can't control it.

Diagnosis - Perspective

For the first two weeks after my diagnosis of ALS, I awoke every morning thinking: "I have ALS, I'm going to die." But I could not go on like that and my native happy temperament had to come back. After I made a bargain with God that I would pray everyday to know who I could serve, I came to feel a peacefulness again in my life. I have since revised that prayer to include making memories with my family or accomplishing something important each day. I now awake every morning thankful for a new day and to be able to accomplish things during this day.

That having been said here are some things I can't do any more:

I can't talk well, and I eat slowly - which is sad, because these were two of my BEST things! Additionally, I have to feel guilty about losing weight - that's hard to wrap my mind around!

I can't sing, which is a real sadness to me, not that I had a great voice, but I did love singing in the choir at church and I loved going to the Messiah Sing-in. I'm not sure whether I'll go this year, it might just make me sad. Maybe next year . . .

I send my husband's clothes to the cleaners. I liked ironing. I like taking things from chaos to order. But Rich helped me realize that I could be crocheting baby blankets for future grandchildren was a better use of the time it takes me to iron all his shirts and pants, and so I chose the more important thing. The blankets I make for grandchildren will be more cherished than my hours spent ironing.

I sleep with a mask - so attractive! But my new bipap machine is a lifesaver. I sleep better and get more rested. And a study in Europe said that the sooner patients with ALS get on a bipap machine, the longer they live. I'm all for that!

I have trouble using scissors. Since my left hand is now stronger than my right hand and that's a little weird. But thankfully I'm still able to do most things I want by using both hands.

Every once in awhile I have a day when I'm really sad about the things that I have lost. I mourn for them. But then I remember that there are still so many things that I can do. I can type and use my computer. I can use my iphone to text and keep in touch with people. I can read. I can walk Annie every day. I can work at the temple. I can take care of my home. I can scrapbook and I'm getting caught up on my goals. I can still write even with weak hands. I can hug my husband and family.

It's all good!

One Month

I was diagnosed with ALS on July 21, 2011. On August 21,2011 it was announced that researchers discovered the cause of ALS. I think that's pretty amazing! And now we hope that those same researchers find a drug that can cure/reverse ALS.

It's all good!

Angels

"I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts and mine angels round about you, to bear you up." D&C 84:88

Comfort has come to me in the form of family, friends, and members of our ward and stake who have lovingly visited me and brought gifts. I am so blessed to live among such angels who have come to mourn with me and to share their love with me. Thank you for your love and prayers and fasting and visits and gifts.

It's all good!

Missionaries

One of our sweet missionaries wrote this in an email to all our other missionaries:

Many of you do not know me, but I had the privilege of serving with some of you. This news is devastating for us all, as we all know and love the Rife family and benefitted so much from their selfless sacrifice to take their young family across seas to Korea to serve the Lord (and us). Most of us can only imagine the flood of emotions they are going through right now, and I'm sure you are like me in being willing to do anything to help, but feeling helpless and not knowing exactly how to help. If there is one thing that I have an unwavering testimony of, it is that of the law of the fast. Imagine the power of several hundred returned missionaries fasting together for their "mission mom" and her family. Therefore, I propose that we join our faith and love in fasting/praying next Sunday July 31 in behalf of sister rife and the entire Rife family. No matter where you are, or what your circumstances are, It is something small we can do for this exemplary family who has touched and impacted each one of our lives. Fast for each of the Rife children and their families as they could all use an extra measure of comfort and peace. Fast for Elder Michael Rife as we all remember very well those first few months in Korea and how trying they can be in and of themselves. Fast for an outpouring of faith, comfort, peace, and tender mercies to be poured out upon this incredible family. Fast for whatever you feel guided to fast for.

Our Relief Society President extended an invitation for my dear RS sisters to join in. And we have found out that the Pusan Mission will also be joining. I feel honored and humbled to have so many fasting and praying for me. But I am, oh so grateful, at the same time because I believe in the power of fasting and prayer and I believe in God-given miracles! I pray that my life can be extended, that Michael will be comforted and be able to complete his mission to the Korean people, and that our family will be able to feel comfort and peace.

From the bottom of my heart, I thank everyone who is joining me in this fast. Thank you!

Its all good!

Diagnosis

Since March I have been having some symptoms: slurred speech, weakness in my hands, weak eyelids, excessive emotions. I had a busy March with getting Michael off on his mission and having a new granddaughter in New York. In April I finally headed to the doctor and had an ultrasound of my throat. A nodule was discovered on my thyroid and it was subsequently biopsied and found benign. It didn't have anything to do with my symptoms.

Then I was referred to a neurologist. In the month and a half since then I have been put on two different medicines for myasthenia gravis; neither one helped with the symptoms (but I was privileged to have all the side effects). On July 21st I finally got into the U of U Neurology department to see a specialist and I was diagnosed with ALS, also known as Lou Gehrig's disease or Motor Neuron Disease. It is a degenerative disease that attacks the motor neurons and they just die off. There is no cure. There is a medicine that seems to arrest the development of the disease for a time and I'm starting that today. About 50% of people die within two to five years, but there are also people leaving with ALS for 5-15 years. I hope to be one of those!

I'm grateful to have as my doctor, the leading specialist on ALS in seven states. They have a great ALS clinic at the U of U where people come from all over the western states.

It was a devastating diagnosis - we're calling it a "major bummer!" The hardest part was telling our children and mourning with each one. We were able to talk to Michael in Korea and tell him the bad news. I promised to keep his dog, Annie, alive while he was gone, now it seems I need to keep his Mom alive while he is gone.

I have many things to be grateful for: 53 great years of life on this beautiful earth, 35 years of a wonderful marriage with the love of my life, being a mother to six beautiful children, being Nanajan to seven grandchildren. As I have heard of people being diagnosed in their twenties, I have been especially grateful that I was able to raise my family before this disease struck me. I've had a truly blessed life! I'm not afraid to die, but I will miss being with my family.

My new favorite scripture is Mosiah 24:15

"And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord."

If I had a "bucket list" it would be the last fourteen words of that scripture. In the mean time I'm going to live my life to the fullest every day!