September 28, 2010

Happy Birthday Craig! You would have been 49 today! Time has gone by so fast, but haven't stopped missing you for one second.....

On September 20th, I was in Phoenix at the AZHI for the testing to see if I did have blockage of my veins. After all the tests were done, I met with Dr. D. and Teresa, and sure enough, I did have blockage in my right jugular, and an abnomality in my left jugular and my agzyoids vein. These were the words I was hoping that I would hear! To go and find out that I didn't would have been one of the biggest let downs I would have ever had. But it was true! I am diagnosed with MS, and my veins are blocked!! Dr. D. asked if I could be there the next morning around 8 a.m. to start my procedure! I was so so ready!! Tuesday morning I woke up, didn't sleep too much that night, and was there earlier than my appointment, around 9:00 Tuesday September 21st, I was on my way! After getting the IV in, I was wheeled into the operating room! Amazing I was nervous at all!! I was awake thru the whole procedure, wish I could have seen the screens a little bit better, but I did see that wire going thru my veins!! My right jugular was blocked good, I felt it and heard it! Wasn't really what I would call painful, just a very weid feeling. Next he went to my left juglar, and I could feel it when he went in there, but didn't have the sounds with it. Then he went to my agzyoid vein, and I really felt that. Must have been something in there too to move out!! After that, he was all done! I went back to recovery, after about 2 hours they took the IV out of my left arm, and said I could go back to the motel. Set up an appointment for 7:20 the next morning to meet and discuss what he had found. That first night, I when I layed down, I had a total rush of heat that went all the way down to my toes. Like I could feel the blood rushing to my feet! That was a bit strange! That Wednesday morning, all I could think about was getting home to my own house! Drove the whole way. Which was way too much for the day after the procedure. The first night home, I still had that rushing buring thru my body as the blood flowed. Thursday morning, I gave myself a panic attack, which made my heart race, scared me!! Called and Teresa called me back and told me this was just my normal blood flow, and my body would get accustomed to in a day or too more! She was right! Friday was the last time I have felt this! Must mean my blood is flowing!! Spent the weekend doing as little as possible, I am still not what I would say a whole lot better, but have to know that I didn't get this way overnight, and it is going to be one day at a time and pray that I will see some little things each and every day! Its been one week today since the procedure, and I still have to make myself get up and just do it!! Mowed my lawn today, and ran the water. Fall is almost here, the leaves are falling out of the trees, and the nights are cool. Life will be good!

September 13, 2010

One week from today, I will be in Phoenix to undergo testing to see if my veins are blocked or narrowed. I am anxious and scared at the same time if that is possible! I had the most awsome weekend, spending times and riding bikes and playing outside with my grandson's! They are so amazing!! Gives me the push to hurry up and find out what is going on in my body!!!

I am axiously awaiting word from a friend I have met on here from Canada, she is having the testing done today! I pray that you find the healing! We all want unplugged!!!

Another beautiful fall day, as I so ready for my trip to Phoenix!!

September 5, 2010

Still counting down! 15 days till I have my scan for CCSVI! I kept my self very busy the last two days to try to keep my mind occupied. I did a lot of painting over the last two days! Will have to go back and do touch ups, but was too hot outside today to do it all! Tomorrow is Labor Day, and I am planning on going to see my grandkids. I sooo miss them, not getting to see them several time a week! Want to spend as much time as I can with them over the next two weeks, and want them to know that I am going to most likely have surgery on the 21st, and that will make grandma feel so much better. I just want all to know that it has been a very difficult time these past 11 years, and I am praying that my fatigue and all the other symptoms I have with the diagnoses of MS, will change, and that it will be a vascular issue, the blood not flowing correctly thru my jugular veins.

September 3, 2010

Today was a good day. Went to the Pavillion and picked up the disk of my MRI I had yesterday.

Have had a very quiet evening to reflect and relax and just imagine how things might change for me by the end of September 2010.

September 2, 2010

Today I went and had my MRI for AZHI. Faxed the records release to local dr. to send to Arizona. Today was a very long day, with lots and lots of anticipation. Spoke with my friend who will be down there the same time I will, and helped to relieve some of the anxiety! It is going to happen!!

September 1, 2010

Today, I received another packet from AZHI, got it all filled out and faxed it back to them. By noon today I had my appointment!! SEPTEMBER 20, 2010!!

I was so happy, I didn't know whether to jump around or cry! So I did both! My countdown is on. In less than 20 days I will know if I have restricted veins and need angioplasty, or if I will just have to live with everything as is, and pray for no further disability.

Motel reservations are made for 5 nights in Phoenix! I won't lie, I am scared. But to have possitive treatment will be worth everything!

Sounding Promising!

I just got off the phone with MEDICARE... this is what they told me.

For outpatient procedures and testing they will cover 80% if it is medically necessary.

No referrals are needed and no pre-authorizations are needed.

And they will cover all angioplasty procedures and testing.

Medicare: 800-633-4227

Having to Make my Decision

Today was the usual Wednesday. But what makes it stand out is I got a phone call frin AZHI and a written prescrption to go have a MRI done of my head and c-spine. Of course the local facility closed about a half hour before I got the call! So now will have to wait until in the morning to schedule. According to the person I talked to, they will allow to bill our insurance for the procedure, and what it doesn't cover, then of course I would be responsible to pay. Asked about the schedule, and looking at mid to end of September! That is not very far off. Even though I am nervous and a bit scared, I know deep in my heart and soul that I am the only one that can help myself, and have to take that big step. There have been several other places that are doing the procedure, and honestly, think they all will be about the same. So will just go with the first one I contacted, and do lots more research before I go! Fall is almost upon us, and I would love to feel like I did back in the day before the wonderful MS Monster took ahold of my life!

Hot and Sunny Saturday

Well, today was my get the yard work done! Mowed the yard, pulled weeds, ran the weedeater, and then watered! Needless to say, it was a lot of work. I honestly think that I feel better when I get out and do things, even if it makes me sweat!



I spent the day doing a lot of thinking and praying that I have made the right decision to go for Liberation. I talked to a couple of Sisters from the Church that came by, and I feel that God is not going to lead me wrong. The closer I get to having the procedure done, the more I find myself saying lots of prayers.

I am happy for my kids to get moved into their new place in the country, lots of work this past week cleaning and getting it ready. I'm gonna miss them living just 10 minutes away from me, I will miss my grandson's coming over just for the afternoon. Colton will start kindergaden on Monday, and will have his 5th Birthay on the 29th of August. Time has gone by sooo fast. He will get to ride the school bus to and from school, so that will be fun for him.

I am in a bit of a sentimental mood tonight, just wondering what the future holds for me. Tomorrow will be better!

Arizona

I finally heard back from Arizona, filled out the application and questionarre, and faxed it back to them. Will now wait a bit longer to see if I am accepted to come and be scanned to find out what really is going on with my jugulars! After that, if there are problems, I will make my decision to be treated. Oh wouldn't it be wonderful to feel good once again. After 11 years this has become the norm... and will take some getting used to be able to say "I FEEL GREAT"! I am very excited, and really hope and pray that this can all be accomplished by the end of 2010. And then a whole new outlook on life for 2011.

My grandson starts Kindergarten this coming Monday, and I want to have the strength and energy to be able to attend and be a part of his fun! To be able to go to school functions with him, and enjoy it without struggling because I just don't have the energy.

My Bubble was Burst today....

Back in July I met Cyn Kohls who had gone to Cabo San Lucas Mexico to have the angioplasty procedure done. How inspiring her presentation was! I was on the waiting list to have everything done at Arizona Heart Institute in Phoenix, AZ. Figured I would wait and get it done there. Not having a passport to go to Mexico, thought it would be better to have it done here in the states. Well, I once again should have gone with my gut feeling, in following up and getting my passport to go to Cabo. After being told for the last few months everything was going to start August 1 in Phoenix, and I was go be #230 on the list for the procedure, today, find out that they are only going to do the scans and will not take any insurance, and then after a study, they might offer the angioplasty procedure! So I have lost another 2 months! Man I have got to start listening to myself, I have to be move forward with my plans, and quit procrastinating about them and do what I know I should do!!

So, now I have my work cut out for myself to get busy on planning a trip to Cabo! Put on a happy face and do what I got to do!!

My Inspration for Liberation!

Hope

I first heard about the CCSVI Liberation procedure back in November of 2009. There was so much going thru the internet it was almost overwhelming! The more I thought about it, the more it made sense to me. I made a personal choice on March 27, 2010 that would be the last injection I did to myself.. I had been on Betaseron for the past 6 years, and prior to that Avonex for 5. When I think back on it now, I never had a good day, always felt like I had been run over by a mack truck, took all I had to get thru my day. After being off all the drugs for the past 4 months, I honestly think I can say I have felt better in general. I have submitted a request to have Angioplast done here in the U.S., and if I am not satisfied with the results there, I will be going to Cabo. The more I think about it, I almost wish that I had chosen to go to Cabo, because I would probably already have a date set, and know when my angio was going to be done. (Boils down to having that much $ to go to Cabo)!! This will give me time to raise some funds in case that I do go to Cabo. I have 2 other friends that I have know for 0ver 35 years that both have MS, and are both schedule to have the procedure done here in the US also, I am to be the 2nd one, so after my first friend has her's done, I will know more what to expect. I met a new friend a couple weeks ago that has been to Cabo and is having amazing results of improvement!! Gives me HOPE that this will at least give me a better quality of life to be able t to do things with my grandson's and family! Time flies by so fast, that I should be hearing the date soon!

Where do I start!

This will be the beginning of my life with my wonderful diagnoses with MS. The last 11 years have been a whirl wind of trying times, many good and many bad. I will start off here, and fill in the blanks for the past decade to where I am now in my life. And all the great things that I have in my life and the ups and downs I have experienced. This is going to take me a while, and I will have to do some real thinking, so that this can all be passed down to my friends and family!