Here's to a better week

I do have my appointment now for the Tysabri infusion for this Thursday, January 15.  I had to get my doctor's OK to start this drug as Palmetto Infusion Services. the company setting this up for me, did not want to consent to the new drug infusion without having the doctor give his blessing.

I don't fault them for being cautious because many people are "Let's Sue" happy.  I was just frustrated that I had to go through another hoop to get this done.

I have also wanted a new wheelchair and asked about getting a new one back in July 2014.  It is now January 2015 and it is still trying to get through the insurance maze.  I only have until January 24 before I would need to go for another evaluation and start this process all over again.  I am hoping for some good news in a few days.

Of course, I am being told by my better half that I don't need a wheelchair now.  I am doing better because I have used my bike.  I have only used it maybe 3 times so far.  When I get off, I am not as steady as someone should be without any difficulties.  I enjoy the bike and Frankie enjoys riding in the basket on the front.  He doesn't do this until he has walked pretty much the whole route and hopefully done his business.  It amazes me how much faster he walks when he is following the bike.

My days can be either good or bad or even somewhere in between.  I don't walk straight but I still walk.  I can't go for long walks but I do a little.  My memory (short term) is really bad.  Don't rattle off a bunch of things to me and expect me to remember everything.  I usually will have to ask you again and again what was said.

These are just frustrations I deal with daily.  I try to make my day as normal as possible.  There are days when my legs will show me that this day is not going to be a good one and I have to change my plans.  I also have the problem of pushing myself to far too.  I also pay that price too with exhaustion and problems with movement.

I don't know if Tysabri will help me.  I am going to give it a shot, though, in hopes it will stabilize things for me.  It won't cure me but with the hope it will just slow progression down.  I am not in a wheelchair now and I am still able to get around.  This I am very grateful.

I thank everyone who has given me suggestions to help with this disease.  I take all the information and really do further research.  Do I expect a cure soon?  No I don't.  That is OK because I will just keep going the best I can each day.  I try to laugh as much as possible and to not get too stressed (easier sometimes than other times).  If someone wants to talk about this, I do not have a problem talking about my MS.  I know there are fears of the unknown.  I have had many myself.  Knowledge and being able to communicate what you are feeling and thinking, is the best way that I have found to get through the day.
 

Part II Of this a Week

I checked with the fusion center and I have to reschedule my Infusion.  Because I am on an antibiotic from the oral surgery, I can't be put on the Tysabri yet because  it lowers my immune system, which is not a good thing when trying to fight any infections.  Maybe the end of next week I will have this infusion. It is just so frustrating after waiting so long to get this process to this end. I started this whole thing the beginning of December.  I was happy to finally have a date now I wait again. I have handled it this long so what's another week.

We are having a couple of pieces of wood floor fixed this evening and Frankie and I are hanging out in the second bedroom away from all the noise.  This repair was unexpected but appreciated by the builder.  The builder could have said No because we are out of the warranty period.  Maybe having the wood floors has a different time limit.  Whatever the reason, we are glad it is being done.

This will be A week...

It is a little cool this morning but not like others have been dealing with lately.  We are expected to get that Artic blast here by Wednesday night and wake up Thursday morning to very cold temperatures with a high of about 39 degrees.  Brrrrrrrr

This morning/late afternoon I saw an Oral Surgeon to have two implants put into my mouth.  (I know obviously...).  

The surgeon said it shouldn't take long to do and I will be sedated, thank goodness but awake. No pain until the very end when the numbness was starting to wear off.  I did my research and checked it all out on the Internet beforehand so I kinda knew what was going to be done.  Maybe too much information.  It went very well.  I am so, so, so glad I went this way and not by a regular dentist.

On Thursday, I will be going into Port Royal (Beaufort) to have my first infusion of Tysabri.  This is a very powerful drug for MS to help slow down progression.  I had a visit with my nuerologist last month and I was told I was starting to decline and he wanted to stop things.  So, I will start having this infusion, that will take an hour and then I need to wait another hour to make I don't have any major side effects, every 28 days.  My biggest complaint is with my legs and balance.  Memory issues are present and was shown on the MRI films, so when I ask for you to repeat something just said, I do so because of this problem and not because you might think I didn't pay attention.  I have had some brain atrophy which means I no have some of the grey matter around the inside of the skull.

We changed our living room layout again.  We removed one of those green chairs by the slider and it really makes the room feel larger and more open.  We will keep it this way for awhile and may get another chair that is narrower than what we hand.  You will never know what will happen next...

CHRISTMAS TIME HAS ARRIVED FOR 2014

This will be the first holiday that Sam and I will be staying home for the holidays.  It is strange to think we will be here instead of going through all the hassle of airports and airplanes.  We figured it has been at least 10 years without staying home either Thanksgiving or Christmas.  We spent the time going to see Tony, Abby, Gabe, and Sophia and Jon, Michelle, Elizabeth, Katelynn, and later Logan for Thanksgiving.  We would then go see Jennifer, Noah, and Madilynn for Christmas.

Things took a change when Jon and family moved to Denver, Colorado.  We made the change to traveling to Maryland for Thanksgiving to see Tony and family, and then Jon and family and Jennifer and family for Christmas.

2014 became our turn to stay home.  We have a tree up (even though artificial) plus whatever other decorations we still had.  We usually bought a dated ornament each year but for the years we traveled, this tradition did not take place; we finally did this year.  Actually we bought two ornaments.  One represented Hilton Head's lighthouse and the other one for 2014.

It will be a quiet few days around the neighborhood because most of our neighbors will be either driving or flying to see family.  They will be back for New Year's and the celebration will begin for 2015.

We will miss being our around our adult kids and grandchildren.  The grandchildren are growing up so fast, at least that is what is feels like.  We never had the chance to really be around them as they grew.  This is a regret that we wished was different.  We hope they all know how much we love them, and are very proud of them.  The parents have done a wonderful job raising them.

New chapter to our life

It is official...Retirement has arrived.  There wasn't a party or anything, just some handshakes and good wishes.  The time arrived after spending 3 weeks in California working on two jobs.  One was undecided to bid, the other postponed.  Sam saw his way to get away early and he did but not without saying goodbye.

This goodbye does not mean he will never be back to California or with Clark for that matter.  He has already told them what his consulting fee would be and what items he expected them to pick up.  Sam has already heard from them.  The bid that was postponed originally was set to be bid the week before we were seeing Tony, Abby, Gabe, and Sophia for a visit.

We are flying to California in a couple of days for the 4th Annual Betty's Builders Golf Tournament at Pechanga Resort and Casino.  Actually that is the place we will have a room, Journey is the name of their golf course.  Pechanga is an Indian reservation.  It really is a beautiful place in the high desert.  Temecula have so many wineries that you can spend the whole day visiting and sampling and still not get to all of them.

We will be going to two of them to get wine for the raffle prizes and gifts.  Who knows, maybe we will get some to send back home.

Where I was going with all this was this:  we were going from June 11 (Wednesday) to returning on June14 (Saturday).  Sam was asked to head back to California on Tuesday and be there until the 24th of June.  Tony was arriving on the 25th.  Well, we never make plans when it comes to bids.  This bid has once again been moved to the first week of July.  It may even move again, who knows?

The second big item we have had:  the mortgage has been paid off!  We have never done that - EVER!  We still have all the other stuff to take care of but no house payment.  We have worked very hard to get to this point.  So we now have the house and car completely paid for and do not have to worry about making payments.

Now, we need to stay here!  I don't want to move anymore....

New doctor

We had an appointment with my neurologist  several months ago, discussing the need to be on a medication for my MS.  We were having a disagreement about being placed on a drug called Tysabri. Tysabri is a drug that has a possibility of causing death if you should develope a problem called PML.  This is a brain disease that can cause death.  I have known about this drug since it first came out about 7 years ago.  It has not changed.  So, this was a BIG concern on my part.

It has been said your chance of developing this problem is very small, especially if you are JC Virus negative. This virus can be the trigger to having PML if you are positive.  I was checked for this virus and was negative.  I still didn't want to take that chance.  I really was not offered too many other new drugs that did not have some side effects but I felt Tysabri was not for me.  I had read and researched this drug and what I had read, this drug was given to those who were having big problems with their MS.  This wasn't me!  So, we asked for a second opinion.

The office referred us to a doctor at the Medical University of South Carolina (MUSC).  MUSC is located in Mt. Pleasant, SC, which is about a 2 1/2 hour drive for us.  It is just a little past Charleston.  It really isn't a bad drive.  We have done this drive for other appointments and Charleston was were I had surgery for my thyroid.  The doctor I saw, Dr. Aljoeson Walker, was fantastic and confirmed our thoughts about being on Tysabri.  He said I didn't need it as it was the most powerful of the MS drugs and he usually gave it to his patients that were having a lot of problems.  He told us that he had a patient in a wheelchair, who was able to walk after taking this drug.  (This did not happen immediately).  Dr. Walker did suggest another drug called Rebif.

Rebif has been on the market for at least 8-9 years.  It is taken three times a week.  The shot is taken under the skin, with a small needle, compared to the large needle I had with Avonex.  Dr. Walker said, to me also,  that Avonex will be coming out in the fall with a little stronger version of the drug that is only taken every two weeks instead and very similar to Rebif.

For now I will start Rebif.  I am just waiting for the drug to be sent to me, arrange for the nurse to show me how to take it, and start the routine.

We were so impressed by Dr. Walker and the professionalism of his demeanor and knowledge.  He  is at a teaching hospital so he needs to stay very current and have that quality of dealing with so many different people.  We both said WOW after we left the appointment.  He took a full hour with us discussing everything.  It wasn't a quick in and out as some doctors handle their time.  Dr. Walker was funny and put you very much at ease.  What a change from what we had been dealing with my other doctor!  We made the decision to change doctors on the ride back home.

The call to my original doctor was not an easy one and when I did it was not meet with a positive attitude.  I am sure they were unprepared to hear I would be changing doctors as this second opinion was supposed to be just that - a second opinion.  I just had to do what was best for me.

One more other thing I learned.  When you have secondary progressive MS, there are no drugs for this.  The doctors will label you with Relapsing Remitting so the insurance companies will pay for your drug.

It looks like it will be a go for Disney

I will be having the stitches out on Tuesday.  My ankle is not doing too bad.  It just depends on what type of day it is, whether it is cool or rainy.

I had physical therapy last week and it looks like I will only need a couple of sessions.  I have been doing many of the exercises at home remembering what I had to go through when I had to start from new.  She also didn't think I would have a problem going to Florida but I should still use either a wheelchair or scooter to get around.  I was going to do this anyway regardless.

It had warmed up the last couple of days into the upper 70's to low 80's but we just had a cold front come through again so now the temperature is in the 60's during the day.  I know, some of you Northern people see this as a heat wave, but it can be chilly enough for a sweater when you aren't used to it on a daily basis.