Update on the Lumbar Puncture (spinal tap)

The procedure took place about a week ago Thursday.  It was done a different way and that was having me in a sitting position on the table bending over vs laying down with my knees up exposing my back.

I have endured this procedure on a couple of other occasions in the beginning of my MS.  I knew what was happening.  FOR THOSE THAT MAY BE UNEASY LEARNING ABOUT THE PROCEDURE, PLEASE SKIP THIS NEXT SECTION.  IT IS NOT GORY OR ANYTHING BUT I DO UNDERSTAND THOSE THAT DO NOT LIKE READING OR WATCHING ANYTHING USING A NEEDLE.


I was by myself in the room with the doctor and his nurse.  Sam could not be in the same room with me during this procedure.  I knew this so I was not concerned.  As a side note, he does not like watching doctor shows of any kind; real or fake.

As I had mentioned, the doctor had me in a sitting position, gave me a pillow to lean over and a chair for my feet.  He raised the table up and he began.  The doctor washed the area, put on a protection mat to just have the area in site (it is like what you would see in a doctor show where they are pinpointing the one area to cut and they put a pad down with just the one area exposed).  This stuck to my back.  He figured out where to insert the needle in my spine by using his hands and marked the area.  He then numbed the area so I would not feel anything further. The numbing was like you might have at a dentist; you feel no pain.

The doctor had difficulty inserting the actual spinal needle, where one would normally insert which was between the 4th and 5th vertebra.  He hit bone and not between them, upon his first try.  Apparently, I have a mild curve to my lower back which caused this problem.  The doctor moved to the 3rd and 4th vertebra and was successful.  He took several vials of fluid for the testing.  He sent off two to a lab and kept two-three others for testing at the hospital.

Once he was finished and a band-aid  was in place where the needle was, I had to lay on my back for 30 minutes.  I was told to go home and rest the rest of the day and drink fluids, water in particular.  Before I could leave though they needed a blood test so I was wheeled down to the lab.  ( I was not allowed to walk anywhere but had to use a wheelchair.)  Sam left before I found out about the lab test, to bring the car around to the front of the hospital.  I was worried for several reasons while I was waiting for the test.  One, Sam was now waiting in front and having to stay with the car and not knowing what was taking so long.  Two, he might try to come in and go up to the floor I was on originally on, looking for me, not finding me, and trying to figure out where I went.  If he came to the waiting area for the lab, I would be inside the room and he would still be looking.  I know--such a drama I had in my mind.

It did not take too long to get the blood test and I was on my way out to be picked up.  I could not see the car at first and I was offered a phone to call him but Sam does not answer his phone.  Nor does he have a voice mail box set up.  (I need to take of that problem).  Anyway, I had the nurse take me outside and he was there waiting, along with a number of other cars.

We were on my way home.  I did take it easy the rest of the day and felt OK.  One problem that can occur with a spinal tap is a headache.  Usually it occurs the same day but I found out later it can happen up to 5 days after the procedure.  I was told I could do anything the next day if I felt OK.  So I did my usual stuff... WRONG.  I had a headache for 4 days.  I could not understand why but I could not cough without getting a sharp pain, going to the bathroom, or anything that required any exertion with my body.  I was miserable.  I tried taking 4 Advil at a time or 1 Imitrex and 2 Advil.  Either one worked for a short time but then it would return.  I was OK during the night but I think it was because I was laying down.

I drank fluids such as water and tea but it did not help.  I finally contacted the doctor and was told I was experiencing a low pressure headache because of the reduced spinal fluid.  I was told to drink anything caffeinated such as coffee, or highly concentrated caffeine drinks.  If they did not work, use NO DOZ, which is caffeine in a tablet.  If this still did not work, I was told a blood patch might have to be used to bring the fluid up.  Thank goodness the caffein drinks worked!  Once I started drinking them, I felt so much better.  Caffeine apparently helps your spinal level.  Who knew?

Results are not back yet.  I was told 4 weeks before anything is known.  It takes this long!  So I wait.  I will keep you posted.

The trip....part two and other stuff

Remember in part 1, when I had mentioned that Sam took advantage of two wine tastings, well, he met the maitre' de  of the restaurants, and they hit if off.  They had a common bond, being Italian.  When Sam mentioned to him later that we did not have a chance to drink our champaign we had brought because we wanted it with the strawberries, he explained that strawberries were hard to get and this was why it was not offered on the menu.  This did not mean he did not have any, it just meant the strawberries were not offered to the general population.  Georgio would take care of it.  Later that afternoon/evening we had a knock on our cabin door and in walks a waiter with a tray of chocolate covered strawberries.  What a treat!

I think that might be the reason we are on the DVD.  Georgio was the person who was standing at the the top of the champagne glasses doing the waterfall of champaign.  Anyone who wanted could take a turn and have their picture taken with him and spilling champaign down the glasses.  We did just that - I was able to get up the few steps (with help) to the top and have our photo opportunity.  This same shot was in the DVD.  As I had mentioned before, what a surprise it was to see us on the DVD.

After we finally returned home, reality came back into our lives.  Doctors and dentist appointments once again reared their ugly heads.  I had switched dentists when I had lost a back tooth and it was recommended to me to have an implant because of the way my teeth were aligned.  If I didn't, I could lose other teeth.  The dentist I had, wanted me to do this implant procedure in his office.  He thought I might be able to get away with one if he positioned it in the center.  I was uneasy about that and went and got a second opinion.  I was so happy I did?  The dentist I have now suggested that I see an oral surgeon to have the procedure and then he would take it from there.  The surgeon told me I should have two implants because just one centered would not work.  I would have further troubles.  I was sedated to relax me but not to put me out completely.  I was aware of everything but I never felt anything.

I have since moved on to now being back with my new dentist.  Dr. Reynolds had to do a comprehensive  evaluation on me (being a new patient) to see how my teeth were and what if anything needed to be done.  He saw some old fillings had started to leak causing space to develope between teeth.  I needed three new crowns on the top left, two new crowns over the implants on the bottom left and one on the lower right.  Once all this work was done, I would be good to go.  What fun...not!  I should have three crowns finished next week and the start of the two bottom left (implants) started.  Basically taking impressions for the crowns.  At least the chair has a movement to massage your back while you are sitting/laying there.  It's kinda a neat feature for a dentist office.  The dentist isn't bad looking either... :-)

I had my spinal tap done a few days ago.  Everything went well and I did not have any headache afterwards.  I won't know any results for another 4 weeks.  I did learn that my back has a small curve in it which caused a problem getting between two vertebrae that is usually used.  Instead of the 4th and 5th, I need to remind a doctor to use the 3rd and 4th if another tap has to be done.  I don't see that happening anytime soon.  I did need to have other blood work done at the same time.  So far, all I can tell from the results is that I have MS.  Well, how about that......

We are waiting for our paintings we had purchased from the cruise to arrive.  We are hoping this week but what else can we do but wait.  We will be changing the walls in the main part of the house to the artwork.  We took the family pictures down and have moved them to the other rooms.  We can't wait to see everything again!  We are so excited to see the new look.

I am using my walker more now than before.  Especially shopping or going very far but I have had to use even in the house.  I have taken a couple of falls lately but no injuries.  I catch myself before I completely hit the ground.  MS is such a pain.....more ways than others.

The trip, and....

I didn't know what to call this entry.  Maybe it will come to me as I get into the message.

We had a great time on our cruise the end of April when we went to the Caribbean.  We had great weather and the ship was very large and beautiful.  If you ever get a chance, look at their website and look for the Royal Princess and see a short video about the ship. The Princess Cruiseline staff were very helpful for us because I used my wheelchair the whole time around the ship.  I didn't in the suite.  Yes, I said suite.  We had a mini-suite that was handicapped accessible.  We also had a large balcony with privacy.  We brought a bottle of Almond Champaign with us in hopes of having chocolate covered strawberries with it.  Alas we never saw it on the room service menu or at the restaurants.  We were disappointed.

Wine tastings were offered on three different days and Sam took advantage of two them.  I was on my own and even though it took some effort to get around by myself, I still managed to wheel myself around going. On and off elevators, doing a little shopping or just enjoying watching the activities that were going on.  One such activity was a ring toss around bottles of champaign.  It was the ship's champaign so it wasn't the greatest but OK.  I watched people take their turn and only one bottle was won from three.  People gave up and the search was on to find anyone to continue the game.  They asked me and I told them I couldn't stand to do it but the person told me to come and try it anyway.  I was placed closer than the others.  My first try missed.  My second try missed but was close.  I was successful with my last toss and was able to put the ring around the bottle.  It was fun doing a game but now I had two bottles of champaign.  Ours and the prize.  I had to get it back to the room and drop it off.

We went to an art auction aboard ship and bought 5 pieces of art and a poster by Leroy Neiman.  Whenever we left the action, we were given, along with everyone, else a lithograph print of a painting by one of the artists being represented.  We received two (we went twice).

On one of the excursions we took on St. Thomas, we stopped into a shop to look at some pirate items.  We bought a baseball cap  with a pirate them, a new pirate flag for the boat because, after all, the Black Pearl needs to have her flag.  We also picked up a large map of the Caribbean.

We also did some diamond shopping.  I have a new diamond necklace.  We also bought on ship another necklace to go with one of my long dresses to wear.  There were two formal nights but we didn't dress that formal.  We did dress up but that was all that was needed.

Pictures were taken by us and by the photographers on the ship.  We have some nice ones from the two formal nights and when they did the champaign waterfall.  We also bought their DVD showing things about the cruise and activities that happened during the cruise.  It was a big surprise to us seeing us on the DVD.  First a movie, now a DVD.  We are famous...

Once we returned to the states, we had little problem getting through security or immigration.  We found our shuttle to get our car (we had it at a Park N Go), picked it up and away we went home to South Carolina.

to be continued....

Joke

Why did the boy put peanut butter on the road?



To go with the traffic jam!

New Medication

I have started a new medication.  This one is in addition with all the others I take.  It is called Aricept or by Donepezil (generic).  This is a medication given to people with Alzheimer's or for those people with mild to moderate memory problems.  This is a problem I am dealing with now and have been for awhile.  Until this was confirmed that I indeed had this problem, it caused a lot of hurt feelings and exasperation.  Short term memory has been difficult, especially introductions to new people or even persons I have been around and still can't remember their name when I see them again.  Or if I am in a meeting and trying to remember what was said.  I can take notes but the shorthand usual does not relate to the anything.  It is hard to fill in the blanks.

I am not saying I can't remember anyone.  This isn't the case.  I just have difficulty remembering new things and sometimes things from the past.  It is so frustrating for me and I do get upset about it when I can't remember.  I know that when you age your memory starts to decrease.  The problems I have may be part that, and/or it may also be due to my MS, which is a good possibility.

My concern was raised by my neurologist when he was showing me the last MRI that was done on my brain checking for any progression and stated that my scan also presented the same for Alzheimer's.  My doctor said I was progressing and this was why I was put on Tysabri, but he also told me that when I would tell people I had memory problems and they blew it off as "we all forget sometime", this was an actual problem for me.  I am not making this up.

This problem has been one I get depressed about.  I have trouble remembering how to spell words (thank goodness for spell check) but even that sometimes doesn't work when you are not even close to having the right letters.  I know some do have that problem with spelling, even without a memory problem, but for someone who could spell words without thinking about it, especially being a secretary for so many years, this also has been hard.

I am going to have a lumbar puncture in May (the earliest I could do the test) to see if I have the beginning of Alzheimer's.  Now before everyone gets upset, this can be a long time before anything major happens, IF indeed I do have it.  The memory problem can just be related to MS.  I just need to know!

If indeed I do have Alzheimer's, this will give me a chance to try and do everything I can to head it off as much as possible and to plan for it.  IF it is not, I will still remain on the Aricept for my memory.  I will still work on dealing with the memory problem.

My decision to check for this has been two fold.  For my information and for my children.  If I have it, my children might have a chance to have this as well.  The information might be needed later in their lives as they age.  My hope is that this is not an issue.

Infusion went very well

I arrived at the Palmetto Infusion Services Center a little earlier than my appointment time but they took me right in.  I sat on one their oversized recliners and waited for things to happen.  Because I was new, I had to sign and read quite a few documents as well as having a new nurse in the unit doing the prep work.  Christine wasn't new as a new graduate, she was new to the Infusion center.  She had many years as a nurse and in doing infusions.  She served in the Military and had many years doing the same thing, starting IV's and taking care of personnel.

When it was time to find that all elusive vein, I told her not to go for the hand but the wrist.  Nope, she would not listen to me because she said she had been dealing with many patients and said they always want a certain area all the time for infusions and she new best.  Guess what?  She wasn't successful and had to get a vein in my wrist like I had told her.  Of course she had a reason why it didn't work.  It just left me with an ugly bruise on top of my hand.

I have not had any side effects so far (knock on wood) and I hope that stays true.  I haven't seen any changes in my ability to get around but I don't expect to because this is not a drug to reverse anything, it is a drug to slow down the progression.  Progression will still happen but only at a slower speed.  At least this is what the information said.

Palmetto Infusion Services also have doctors on staff.  I feel better knowing this for that "just in case" feeling.

I really feel pretty well.  I still have my moments but I know how to deal with them.  I get frustrated when I have to decline going anywhere because of my MS at times.  I want to have that normal feeling again.  To be able to have fun without checking myself that I am not over doing and causing more of an issue for me.  Taking a long trip or a long day of shopping without some sitting will usually cause me to need a day to recoup.  The long drive will stiffen up my legs so when I start to walk, it takes a while to get those old legs moving.  I am just not able to go, go, go.  Ah, the trials of MS.  I just have to laugh and continue on.  What else can I do?

Today was the day

I finally had my infusion of Tysabri (tie SA bree) today.  I was a little apprehensive but I usually am when it comes to something new.  I can do research all I want, know how any procedure will go, but actually having something done is scary.  I just want this drug to work for me.  If I can't tolerate it, I do not have many other options to go too.  I am going to take it one day at a time and hope it all goes well.

Tysabri is a powerful drug to help slow down the progression of disability.  It is not a cure.  This drug comes with several side effects as most drugs do but there are a couple of serious ones.

Tysabri may increase my risk of getting an infection of the brain or the covering of my brain and spinal cord caused by herpes viruses that may lead to death or severe disability.  This is called Progressive Multifocal Leukoencephalopathy (PML).  The chance of getting  PML increases if I have been exposed to the John Cunningham Virus (JCV).   Typically, people with JCV are exposed to it during childhood and is harmless but it can cause PML.  A blood test was done to determine if  I was carring the antibodies to JCV.  I tested NEGATIVE, which lowers my risk compared to someone who is positive but there is still a chance of getting PML, which is something the doctors have to say to cover themselves.  Getting PML is very rare.  This drug has been on the market for several years now.

Tysabri could cause liver damage and it will lower my immune system.

Now, I am sure this all sounds very scary.  I was scared about this drug when it first came on the market and said "No Way was I ever going to use this drug". I guess I had a change of opinion because now I have gotten a little worse and I want things to slow down.  This drug is not like a steroid.  When I had the infusion of steroids, it was to stop a relapse.  I do not have relapses but continue with the same symptoms but they can progress.  I will never go back to what I once was.  I deal with that on a daily basis.  Actually, we both deal with this every day.

If anyone have questions or concerns, talk with me.  You can go to www.tysabri.com for further information or just put in Tysabri and it will pull up a lot of web sites to go too.

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.

My blog is finally working!

I haven't been able to post anything for the whole year of 2013.  I can't give you a reason why but now that it is up and running, I hope to post more.

As most of you know, last year was not a great one to start off with because I had fallen and broke my ankle in 3-4 places.  Spent a week in the hospital and another 3 weeks in rehab.  I tried to have a new puppy but she didn't work out.  I can't say that she was the thing that caused my accident but I was being stubborn as I was told Molly was my dog and I would be the only one taking care of her.

I was exhausted that evening but I was so angry at that statement, I pushed myself to stay up with the puppy.  I did have some light on but I still got walking too fast to sit down, could not stop myself, tripped, fell, and heard the crack.  Molly was given away.  It was very hard to but I was not in a position to now take care of a puppy.
As the year went, discussions about my upcoming birthday were talked about and I wanted to go back to Disney World as it had been at least 20 years.  I had gone to Disneyland while in California but DW is so much bigger with so much to do.
2014 came to be and again I had hopes that this would be the year of being free to do things.  We had planned our trip for Disney, arranged for the hotel, had Frankie taken care of for a few days, and we were ready!
It has not gone according to plan.  I had just seen my orthopedic doctor and he decided to keep in my hardware for at least another 6-12 months.  Well...a week later I started to get a lot of redness and swelling.  I had a spot open up and was bleeding a small amount.  Back to the doctor and he said it might be an infection.  Antibiotics given and the decision to remove all the hardware.  Disney is in question once more because I am not able to walk too long as it is sore and hurts.  Ahhhh!  A decision will be made on Wednesday about whether to go now or delay again.

Happy New Year 2013

It is a new year.  What will it bring to one and all?  As we get older, it seems that days get busier and busier and we run out of time.  This happens even if you are retired; from your job, from volunteering, from making a life choice to change your life.  What has happened to us that we run out of time? We used to take time to visit neighbors, to talk to our kids, to see and visit with family.  The economy plays a part, as well as, family and friends being spread across the country.  Why can't we stay connected?  Is our life so busy that we can't just stop to say hello?

I saw our grandchildren for Christmas in 2012.  It was an effort to plan and to travel to do it.  I enjoyed being with my grown and successful children and my 7 grandchildren.  It was still hard to try and fit in all the time needed and wanted by the grown children and still trying to give attention to the grandchildren.  There was such maneuvering and planning, with disappointments included, when one could only be at one place at a time.  You can only do the best you can to accommodate all the plans and needs from everyone.  Sometimes you are successful and sometimes you are not.  Someone will always be unhappy in the end.

I always want to make everyone happy.  I try to see everyone's point of view and need, to work with the time I have to give, and yet I seem to fail in accomplishing the goal I have set for myself; to give an equal amount of time.

I do not have the resources to have a place in each state to accommodate everyone's desire.  I  really wished I did and with it, the resources to cover my travels.  Limitations are always in the forefront of every decision; whether it be travels, purchases, visits, your life!

Is there any answer to this quandary?  What does one do to keep moving forward in life without sacrificing connections?  Do we need to go back to a slower way of life?  Was there ever one?

Surgery

It is 10 days now before the surgery of my thyroid.  I am doing OK with this for now.  I have researched and researched information about the surgery and the types of surgery that are offered.

My surgeon is one that will make a small incision to try and avoid a big scar.  I am also going home the same day, which in the past was not the case.  I am lucky on those two counts.  I am worried and so is Sam/Dad.  He seems to be more this time around then usual or maybe it is because of the type of surgery.

I think he could handle the other surgeries because it didn't involve anything close to my neck.  Now, I will have my neck cut to remove a very large tumor.  I am not sure how much of the thyroid the doctor will take as it depends on what he sees when he goes in the area.  I am not sure if the whole thyroid will be removed but I have heard a good portion of it.  I may or may not have to take medication afterwards.
What is another pill, for me anyway?  I take so much now so an addition will not amount to anything.

The months of November and December are turning out to be quite active.  Sam/Dad will be flying up to Bethesda, Maryland, on November 7 and having a large meeting on November 8.  He will fly back home November 8, but it will be a late flight.

On November 13, I have my surgery.  Depending on how I am doing afterwards, will make our other plans work or not.  We have a couple of craft shows coming up then and we wanted to attend.  Sam/Dad will fly to California on November 26, to work on the bid for an addition to a hospital in San Diego.  The bid is on November 29.

The other function, on November 29, is a retirement dinner for a Clark person that Sam/Dad has worked with while he has been with Clark.  This retirement dinner is in San Francisco.  This will mean that he will finish the bid up in Costa Mesa, maybe by 3 PM, try to catch a flight to San Francisco for the dinner (which is about an hour and a half),  and then return to Costa Mesa the next day to finish up the bid.

We just found out when the holiday party will be this year for Clark and it is December 4.  Sam/Dad was to return on December 1.  The quandary now is whether to stay longer in Costa Mesa for the party.  The party will be on the Queen Mary 2.  It sounds like a neat venue for a party.

We are also thinking that if everything goes right, we could stop off in Denver, before our return, for a few days.

All of these plans, will depend on how I am doing from the surgery.  That is the biggest question we have right now.  I don't have a crystal ball to know that answer.  It will definitely be a lot of flying.  I believe that could be handled but what about Frankie?  The time away will be quite long and I have other doctor appointments already booked.  Doctor appointments can be rescheduled.  I have my indecisions with all of these activities.

We just have to wait and see what happens in a week and half.

October 22, 2012

October 22, 2012, is a Monday, time 3:30 p.m., I will meet with the surgeon.  I hope I will be able to get some answers to the thyroid problem.

I have so many questions about what will happen next.  I am sure a biopsy will be done.  I have a greater chance that it will be benign then cancer.  I still know, from what I have read, that the mass will need to be removed and along with it part of the thyroid.   Just how much will be determined once the thyroid is exposed.

These are all things that I have read and partly been told by the Endocrinologist.  I also was told that this surgeon, Dr. Stanley Wilson, is conservative in his approach in regards to surgery.

Is this on my mind?  You betcha! Are we talking about it much?  Not really as there are so many unknowns.

Dad/Sam has other things to concentrate on right now.  He has a bid at the end of October.  He is flying to California, today, October 15.  He will be there until Saturday and fly back to South Carolina, to be here for the appointment on October 22.  Whatever is decided at the appointment, will determine whether he fly's back to California.  Right now, he has a flight back the next day, October 23.

I have a lot of people praying for me and for good results.  I know I will deal with whatever the outcome, as I am strong and have handled major problems in the past.

"It is what it is".  Can't change things so I just have to deal with it.  It is still scary about the unknown!  I am one that needs to know exactly what will happen, so I can organize it in my mind, research and learn more, have things in place.  I still will get nervous and anxious, but I will know more.

Now to wait until Monday

Changes Part 2

I don't have great news to write about right now.  My thyroid mass grew from 3.4 cm to 3.7 cm.  I am being referred to a surgeon and I am awaiting his call to set up an appointment.  I really don't know what will happen or when.  It is so hard to wait for something to happen as you want that something to happen now.

They say patience is a virtue and I do have patience most of the time.  I can wait in a doctor's office for quite awhile when he is behind, as long as I know, I can deal with traffic, I can wait for that repairman.  I can get a chance to reschedule if necessary.  This other waiting, waiting for that phone call to continue on with a problem, is so difficult.  You can't reschedule something that might be wrong with you.

I don't know why my neurologist in California did not say something to me.  It wasn't his right to dismiss it.  I had the report and yes, it did say that I had a large mass, but I did not know that this was an issue that should have been checked.  What made the neurologist I have here, suggest for me to see someone?  Were they more aware of the necessity?  I really don't know the answer to the question.  I am angry though that I wasn't given the option to decide for myself in California.  What made that doctor decide that this was not something to look at or not to feel the need to even discuss it with me?

I know that is history or as I have said "water under the bridge".  I have to deal with the here and now.  So I wait!  I want to call so badly and get an appointment.  This surgeon may not have all the results yet or hasn't had time to review.  Why can't an appointment be made anyway?  Patience is a tough word for me right now.

I am trying to stay busy.  I have been typing up notes for Sam to take for his bid in California for a hospital. This is another issue, Sam wanting to fly to California for this bid and staying until the end of the month of October.  He wanted to leave this week, but changed and stayed an extra week.  He really needs to leave next Monday and will be there until November 1.  I would like to go but things are so much up in the air.

Life has thrown a curve ball.  How do you deal with the uncertainty?  I guess you have to trust in God, your friends support, and to keep reminding yourself that you are strong and you will get through it.

It is still hard to wait....

Changes

Fall has arrived.  We are having warm temperatures during the day and cooler temperatures at night.  We actually opened our bedroom windows last night instead of using air conditioning.  This has not happened for a very long time.

The electric bills have not been extremely high because our house is very efficient with keeping a good even, cool temperature.  Thank goodness!

I had three MRI's done in the last couple of weeks.  One for my head, one for the spine, and one for my neck.  Everything is stable with the MS but the MRI showed a mass on my thyroid, about an inch and a half.  The doctor reading the MRI or my Neurologist could not figure out what it was showing, so I was asked to go to an Endocrinologist to have it checked.

Being in Bluffton, South Carolina has great advantages with location, easy living, and good friends that were made.  The biggest problem, though, is finding good doctors.  I have had to drive to Savannah, Georgia, for some appointments, which is about 30-40 minutes, which isn't a bad drive.  I have my Neurologist in Port Royal, SC, which is about the same distance from us only going North.

The other issue is finding a specialist that takes our insurance too.  I thought I found one in Savannah, who takes our insurance, said they were taking new patients, and had my Neurologists office send all my information.  I was told I would be called to make an appointment, either on Monday afternoon or sometime on Tuesday of this present week, September 24 or 25.

I waited and waited, but I did not hear from anyone.  By early afternoon, on Tuesday, I placed a call to the doctor's office in Savannah, Georgia.  I was put into voice mail and I left a message with her nurse.  I did not receive a call back on Tuesday and I am still waiting for a call today, Wednesday.  I even called my Neurologist, on Tuesday late afternoon, to let them know I had no response yet from this doctor and they placed a call to get someone but also was put into voicemail.  How can a doctor's office calling another doctor's office, not get a response back?

S o o o o, I let my fingers do some walking on the Internet to find a doctor maybe in Charleston.  Charleston is a longer drive, about 2-1/2 hours but we are willing to go anywhere to get the help we might need.  I did find another doctor in Charleston, who takes our insurance, called my Neurologist's office today, gave them the information, and they were going to try and get an appointment for me.  Again, I have not heard a thing!  If this new doctor I am trying to get, does not respond either, I have another one to call.  Why is this being so hard?  Can't someone understand that the person who has an issue with any part of their body, needs to have an answer to put their mind at ease or for them to determine what their next step would be, to handle the problem?

This is so frustrating!!!!

I have hooked up with a local support group.  I am not actually a leader for the group, but someone that will help them out.  The group is mainly made up with people from Sun City, though there are a couple of us "outsiders".  It has been hard to fit with this group, as conversations tend to go with the doings at Sun City and they want to socialize.  So far, not a lot has been accomplished, but I hope I can help out with this issue.

I have a hard time following conversations when multiple conversations are going at once.  I get distracted, from the main speaker, when people are having "side bar chats".  I have decided now to ask people to not talk while someone is talking.  As I usually say, "One Conversation at a Time".  You would think that this would be common sense but I also realize the need to say something before it is forgotten.  We just have to learn to take our turns.