Friday, April 9, 2010

OK, so I saw my neurologist on March 30th. That went well, she did bloodwork for everything under the sun to rule out different things that could be the cause of the exhaustion and that could possibly be caused by my Rebif shot before she sent me for another MRI. She says that this is a bad time of year for me. Well, of course I haven't heard anything yet. So here it has been like 5 weeks of exhaustion with basically no relief and no help as to what is wrong. When you have MS do you just have to live with these things? I mean, this exhaustion right now is affecting my life in a major way. I basically have no energy to do anything and I KNOW my work is suffering. I even told my neurologist this so that maybe something could be done. I called the office today and left a message for the nurse asking if the results to my bloodwork was in. she called me back a few hours later and said that they were and everything looked good except my vitamin D and my Sed rate. Well, if my sed rate is up doesn't that show inflammation somewhere in my body and couldn't this inflammation be some sort of flare up or relapse or something? My doctor is not aware of the results yet but she was going to pull my chart and leave it for the Dr. to review. I am desperately hoping that this sparks something! Tjhe way I see it is if these blood tests ruled everything else out couldn't it be some sort of flare up that she needs to be treating! Here is hoping she responds soon!!!

Tuesday, March 23, 2010


I need a break from this disease called MS.. I am tired. When I say tired it is the mind numbing can barely stand up kind of tired. You all with MS probably know what I am talking about. It is near impossible to get a hold of anyone when something is going on with me. By someone I mean my neurologist. What is this??? When I feel the worst I have to work the hardest to get a hold of anyone to help me out. I have placed 2 e-mails to her because she has been out of the office on ward duty for the last 3 weeks and I have heard nothing. What is this? Is this normal? does anyone else have this same problem? I know that this probably isn't a big deal to her but it is to me. WHAT TO DO WHAT TO DO?!?!?!?!?!!?!?!!?!?!?!?!?!?!?!! I'm kind of sick of chasing her down so I give it one more try then I give up and I'll just wait til my next appt.

Friday, March 19, 2010


Well, I have been feeling terrible lately. It is unnatural the amount I have been sleeping and my feet are tingly. I really think that I am having a reapse or something but my neurologist hasn't been in the office for 3 weeks and getting through her secretary and nurse is like pulling teeth. I am in a funk and am trying to get out of it because lets face it -
That is my motto and I need to pick up my chin and grin and saaayyyy - THE SUN WILL COME OUT TOMORROW SO YOU GOTTA HANG ON TIL TOMORROW COME WHAT MAAAYYYYY! (JUST KIDDING). Well kind of. I really need to get out of my funk because it's like spring here and I should be giddy with spring fever.
Now that I have that off my chest I feel better. This is like a place to rant and rave and know that people understand what I am going through and don't mind a little whining1 Right?!?!?!?!
Anyway, not much happening here. it can't I have been sleeping. Tata for now!

Thursday, February 18, 2010


For the past 3 weeks or so I have had this really ithcy ear and then I get a deep ear pain. It is intermittent. So I went to my GP yesterday. Well, I saw a nurse practitioner because my Dr. had retired as of Dec 31st. I liked the lady and it turns our she lives on my street but I really didn't get anywhere with this pain/itching. This same thing happened last year and I was sent to a specialist who couldn't find anything wrong with the ear. And he believe that it could be my MS. This new NP that I saw didn't really even entertain the thought of MS and she actually said I was too cute to have MS and looked at me like I was joking. Now first things first, I am not that cute and I DO have MS. Before she even looked in my ear she told me what was wrong and that I was too old to have an inner ear infection that it was just an infected ear canal. It didn't look too bad just a little roughed up. I'm sure that it was roughed up because I have been sticking everything under the sun inthere to itch it. She gave me some drops which turned out to be the same drop I had already been using that the specialist gave me last year that didn't work. So I am back to square 1. Is this and MS ear thing? Is it possible? Is there such a thing? It is an intermittent stabbing pain and an intermittent terrible itch? I see my neurologist again next month if it doesn't let up I guess I'll ask but what a pain.

On a sweeter note, I had a big Valentines dinner on Saturday night. It was a sit down dinner for 12. It was so great. I rented 2 round tables all the dishes and silverware and linens. I made beef wellington, asparagus bundles and twice baked potatoes for the main entree. Appetizers were brushetta, grilled shrimp cocktail and rumachi. Dessert was heart hasped brownies, chocolate mousse raspberry parfaits and Red velvet cupcakes. It was awesome. 16 bottles of wine were consumed by the drinkers of the group. After dinner we just hung out around the table and played apples to apples and it was just fun! I haven't had fun like that in a while. It was great.

This weekend I am going to Belhurst Castle with my husband and my best friend and her husband. It is a combo Valentines Day, Anniversary and Birthday get away. It was mine and my husbands anniversary this month and my BFF's husbands birthday. It should be a really good time. I can't wait. Well, that's all for now.

Monday, February 1, 2010

Hello Again!

Well, I'm back! I haven't written in some time and I'm not sure why. I guess I'm just tired maybe. Lots has happened since I last wrote.

My rescued dog Lola had her surgery. It was much more extensive than we originally thought so we ended up taking her to Cornell to the animal hospital. My vet had her knocked out on the table and realized he couldn't give her the care she needed so he called me and said he was calling Cornell and getting us an appt. with them. Cornell did a soft palate resection , removed some laryngeal sacks that were swollen and covering her trachea and then cut a little wedge in her nasal passage to open up the flow of air. She is FANTASTIC!!!!!!!!!! She also saw a dietitian and opthomologist while she was there.

We also had our annual Halloween party. We're getting famous for these parties. They rock. Iturn my whole house into a halloween haven and all the food has a gross name or shape or something. It is so fun. We were the Teenage Mutant Ninja Turtle along with two of our close friends. It was a blast.
Christmas was not the greatest this year. My husbands father passed away the week before x-mas very unexpectedly so it was a rough one. New Years was subdued so here we are.
My husband and my anniversary was the other day. We got married 02/02/02 at 2:02 in the afternoon. 8 years!!! Time goes so quickly. We have certainly been tested in these eight years.
I feel like we could weather any storm and be just fine. We lost my 2 grandfathers, my grandmother and my father all within 3 years of each other, I got MS, and now we have lost his father. This relationship will last forever.
Other than this all seems to be well. I had an MRI of my head a few months ago, met with my neurologist and she said no new lesions but then she did her examination and I had no reflexes on my left side so she sent me for another MRI of my spine. There is a new lesion on my spine but it wasn't inflammed anymore so we'll see how things are in a few more months.
Other than all this things are swell. i feel OK. Just tired (what's new) I'll write again soon

Tuesday, October 6, 2009


My husband stopped off to see our tattoo artist the other day to give him our sketches so he could work with them and make the necessary changes. I am so excited!!! I haven't gotten a new tattoo since all of this MS business started so it has been almost 2 years. We go back the 17th to get them done!!!! I can't wait. It usually takes a while to get an appt with him so I was so glad it was as soon as it was They are not kidding when they say that once you get one you want more. It is so true.

When I was in college (about 17 years ago)I got my first one - A very tiny one- I came home one weekend with my roommate and best friend at the time and we got the same one. I was dating my now husband who HATED tattoos back then. He didn't talk to me for 2 weeks.

About 6 years ago I begged and begged because I wanted another one and didn't want him to be mad at me and he gave in. (marriage made him soft) So I got one on the top of my foot. He came with me and I think that might have been his turning point. I think he tought it was cool. After that I talked him in to getting one with me for Valentines day and he did and now he's addicted too. It is kind of fun getting tattoos together. They are not the same designs or anything but it is nicer having someone there to do it with you.

It is nice having something to look forward to.

Monday, September 28, 2009


She called yesterday (Sunday) Yea!!!! She'll make me feel better.