Thursday, November 6, 2014

It's November now...

Well, It's another month.  I wanted to post more frequently than that.  I don't know how all these moms with little kids post on their blogs so frequently.  I could probably post a little more, but I fall asleep at the computer quite frequently, which makes it difficult to type up a blog post.  Since I took a long nap this morning during my IVIG infusion, I feel pretty awake right now, so it's a good time to post.  Plus, I can't really do much during my infusions because when I do, I get a headache and my BP goes up.  It kinda sucks.  It drives me crazy to have to lay in bed for 2 days and have someone do everything for me.  I'm way to independent for this.  It took me about 6 months total before I really let my home nurse start doing a lot for me and then it wasn't until I got my second nurse that I started to give in.  My 1st nurse really didn't try to do much for me.  My second nurse really had to start insisting that I allow her to do things for me.  She wore me down though.  Now she does everything for me for the 2 days I get my infusion and we have become very good friends.

Sleeping for me has been really off lately.  I never sleep longer than 2 hours at a time at night before I wake up to either go to the bathroom, or because I am in pain, or because of muscle spasms.  I posted about that in detail in my last post, so I won't go into that any more, but to say that I had my consult with the specialist.  She is concerned I may have central sleep apnea from my MS.  I had a sleep study last week.  I'm still waiting on the results of the study.  It wasn't as bad as I thought it would be.  I didn't think I was going to be able to sleep with all the stuff all over me, but I was so tired that I fell asleep as soon as she left the room.  I'm still waiting on the results though.  It's been a week as of today so I hope to get them soon.  If there is any apnea, then I have to get another study done with the machine on to get the settings correct.  I'm hoping there is actually something they found that can be easily fixed.  Nothing else I have can be fixed.  Maybe this can be.  I'm just not confident that it can be helped.  I guess I've become cynical.

Wedding preparations are coming along.  I can't believe the wedding is in only 2 months now.  Rachael is starting to get really stressed out.  School is a lot busier this semester.  Tapestry didn't give her any classes this semester, so she had to get a job at Joann and they don't pay as well, so she has to work three times as many hours to make as much money and doesn't get off until 10pm 3 nights a week.  On top of that, she is planning a wedding.  Her photographer fell through the day before their engagement photo shoot, which pushed back their engagement photos getting done, which meant they can't get their engagement photos on the back on their wedding announcements since they need to get those ordered ASAP so they can get them mailed out by the end of the month. Today, I created an alternate back for their invitations so they can get them ordered.   Everything else seems to be going ok though.  Once they actually get their engagement photos done, I'll post a few photos from their engagement photos.

This Sunday is the primary program.  We have had 3 week of practice and the kids sounded pretty good last week.  I'll post on Sunday afternoon and let everyone know how it went.

Monday, October 20, 2014

Spiritual weekend

This weekend was a wonderful, spiritual weekend.  We had stake conference this weekend.  For those of you who are not LDS, stake conference is a conference for  a group of congregations, also known as wards, that make up a stake.  Stakes are kinda like a school district.  There is usually about 10 wards in a stake.  We all meet together and listen to our stake leaders speak to us.  We have them twice a year.  This conference, we had a visiting general authority from Salt Lake.  He was a member of the Quorum of the 70's.  His name is Elder Hamula.  He is an excellent speaker.  The  purpose of a 70 is to testify of Jesus Christ.  He did exactly that when he spoke and I could feel the spirit of the Holy Ghost testify to me so strongly of the truthfulness of the gospel.  I'm so grateful that I have the gift of the Holy Ghost to be my constant companion.  I am also grateful for the knowledge that my Heavenly Father loves me.  It makes these challenges I have to endure a little easier at times.  I'm not as likely to lash out at God even though I get frustrated at the never ending pain.

My most recent frustration is lack of sleep and daily fatigue.  I fall asleep all day long while I try to do things around the house and in my daily like.  Many of the things I fall asleep doing are not very safe to fall asleep during such as driving my wheelchair, cooking showering, washing dishes, sewing, standing and just about any other way you can imagine.  I broke my ankle on January 1st by falling asleep on the edge of the bathtub and falling over.  I rolled over with my entire weight on my foot and bent my ankle in half.  I had to have plates put in my ankle.  I spent 4 weeks in the hospital after that fall between complications after surgery and rehab.  I broke my ankle on my good leg, so I had to have a lot of rehab.  I'm not anxious to repeat that again.

My neurologist referred me to a sleep specialist last week.  I think I see 7 specialists on a regular basis now.  .On Wednesday, I had a 45 minute consult with the sleep specialist.  She is going to test me for sleep apnea.  She thinks I might have central sleep apnea from the MS.  I may not be breathing deeply enough to be getting enough oxygen at night because the proper signal is not getting from my brain to my airway.  She said it is a little more challenging to treat but it is treatable.  I have to have a sleep study done.  I am just waiting on insurance to authorize the sleep study.  She also put me on some medication during the day to keep me awake so I am not falling asleep in unsafe situations.  I"m still working on finding the right dosage, but I noticed a big difference even with the dose not being right.  I hope she can figure out what is causing my sleep problems.  I'm tired of not sleeping well  I rarely sleep more than 2 hours at a time at any given time.

Saturday, October 11, 2014

Gaga Ball Game!!

It's been a while

I haven't posted in 2 1/2 years but I decided I'm going to give it a try again.  Someone said I should start writing about my life and I told her I used to blog and I thought I should document all that I go through since I don't keep a journal.  This will just be a public one.

The last time I posted, I talked about being in a wheelchair and possibly getting a baclofen pump.  Well, I am still in a wheelchair and can only walk a little bit.  I was able to walk around the house without any assistance this time last year, but on January 1st, I fell and broke my left ankle.  I had to have surgery and ended up spending 4 weeks in the hospital between the regular hospital and rehab.  I also had another flare to my right leg that took away all my work and weakened my right leg more.  I'm just now starting to walk a little better but I still have to use the chair in the house.  I'm progressing a little bit each week.

I got a baclofen pump in July 2012.  It has been the best treatment ever.  My spasticity is under control for the most part.  If at any point I have increased spasticity, I just have to go to the doctor and he adjusts the pump dose and then my spasticity is under control again.  IT IS AWESOME!!!  I have to get it refilled every 6 months, which means going to the hospital and having it filled with a needle under x-ray.  The pump battery will last about 7 years then I will have to  have the pump replaced.

I'm not going to update anything else about my MS.  I'll add things about my MS as I post more as time goes on.  There is too much to update in one post.  It will take me hours, plus it will depress me.

Now for the big news of the year.  Rachael is getting married.  She and Zack started dating in March I think.  They got engaged over the 4th of July weekend.  They will be getting married January 9th with a reception on the 10th.  Their wedding will be held in the Texas San Antonio temple.  She is also in her senior year of college and will graduate in May with a bachelors of Fine Arts in Dance.  She plans on getting a job as a professional dancer and teaching on the side.  Zack is currently in school working on some kind of computer degree but is thinking about changing his major to chiropractics.

The boys are doing well.  Andrew is working on his Eagle project now.  He is going to make a Gaga pit at the church in the picnic area in the back.  Andrew learned about this game at scout camp and it is hugely popular among his fellow scouters.  He will have plenty of volunteers to help him if he can ever get it done.  My kids have inherited their fathers procrastination.  There is a video about Gaga in the next post.  Andrew also got his license this year.  That is a huge help to me.

Jeremy is in boy scouts too and he is still in Tae Kwon Do.  He is a purple belt now. He loves it and plans to go all the way and continue with it for the rest of his life.  He is one of the happiest boys I know.  He always has a smile on his face.  He loves everyone and everyone loves him.

Stan is still bishop and he is doing a great job.  He has gotten big time into board games.  Our family room has a big shelf that looks like a shelf in a comic store.  They are a lot of fun though.  Way better than spending the evening watching TV.  I prefer to play the cooperative ones with him.

There is more to me that just my MS, so here is a little about what I have been doing.  I haven't been able to sew as much this year, but I have been doing some.  Still mostly bags.  I have some Christmas tree skirts I started for Christmas last year that I need to finish but I haven't touched them.  I still make one or two things a month.  I've also been called as primary president, so that keeps me a little busier.  We start practicing for the primary program tomorrow.  I had no idea that the presidency had to write the entire program themselves.  That was a lot of work and I'm still nervous about how it's going to turn out.  I hope it's long enough and I hope it flows together and makes sense to the congregation..

My goal is to post every few days during my rest time in the afternoon.  I hope I can do that.  This would be a good way to keep a record of my life.