Friday, May 29, 2009


OK, Enough already, I am still exhausted. I am sleeping well but I wake up as tired as I went to bed. It is that overwhelming tired where you feel like you have no idea how you are possible going to make it through the next 5 minutes let alone the rest of the day. The tired where you are driving home from work trying to stay alert and by the time you pull in the driveway you just sit there trying to get enough energy to walk in the house. I HATE this kind of tired!!!

I am still doing way too much. I am the Matron of Honor in my friends wedding and have been taking on too much and work has been extra stressful lately.

Tomorrow is the Bachelor/Bachelorette party for the soon to be married couple. The big bash is at my house. So, of course, I have been shopping and cooking and cleaning and doing yard work. All of which is too much for me right now being as tired as I am. I keep pushing myself and everyday I am feeling worse. I can't wait for this party to be over so I can rest for like a week.

On a positive note, I received a call from the nurse who is going to train me about Rebif and I am meeting with her bright and early Monday morning before work. I'm guessing that it will be exactly like Copaxone so it won't be hard to learn. Maybe starting on this new med will make me feel better. I'll keep my fingers crossed!!!

Monday, May 18, 2009


I had a rough weekend this weekend. I think it was because Friday was very stressful at work. I was just so exhausted this weekend and instead of resting I did gardening and housework and all kinds of things until I couldn't do any more. Basically, I over did it. I knew I had to take it easy but I had so much to do. I feel so lazy and useless having to rest all the time. I am so tired of being tired!!!!

Fatigue is the thing in MS that I have the hardest time with. It is so hard to describe the feeling. It is overwhelming. Sometimes you cannot fathom the thought of doing the simplest thing. I have always been a really busy person with endless stores of energy. I now need to budget my energy and I find that I am really bad at it. I take on too much. I know this and yet I still do it. Call me a glutton for punishment. I just need to smarten up!

Friday, May 15, 2009


Well, I never got up the courage to call my neurologist again. I didn't have to, they called me and said the Dr. reviewed my MRI and wanted to see me the next day. Cool, right? You can look at that one of two ways. 1. It is bad news or 2. She is very thorough and wants to go over the test with me. I choose the latter. What is the worst they could tell me? You have MS? Been there, done that, no biggie.

So, I go and meet with her and I have new lesions. I am not surprised because I haven't been feeling the greatest and I am SSSSOOOOO tired lately. She doesn't feel that the Copaxone is working for me and wants to put me on Rebif. Fine by me, but I had just ordered another 3 more months of Copaxone the night before. I went home and called immediately to see if I could cancel it. Luckily it wasn't too late.

I really like this Doctor. She seems to really enjoy her work. The first time I met with her and was giving her my medical history, I told her that I had cancer as a baby she asked me what kind and I told her Neuroblastoma, she said "You're a keeper". She is just really fascinated by the science of it all. I guess that is what makes a good doctor.

Wednesday, May 13, 2009


I made the decision to switch neurologists like 2 months ago. I just wasn't thrilled with the office staff at my old one. The Dr. was great, but the staff ( a whole 2 people) were always changing and not for the better. Last summer I had some issues with numbness, tingling and anxiety so I would call and leave a message and he would get right back to me to see what was going on. A few months back I called for 2 weeks trying to get ahold of him. The phone was consstantly going to the answering leaving messages that my Trigeminal Neuralgia was worse and that I was in alot of pain and I never heard from him. I really don't think he was getting the messages.

So, in April I went for an MRI ordered by my new neurologist because I will have been on Copaxone for a full year. I called more than a week later and left a message asking if they have gotten my results. I haven't heard anything yet but I am not sure if I am being impatient or if I should call again. I do not want to be annoying at all. I am just anxious to see what the results were.

I am so bad at this stuff. I am always worried about being nice and not bothering anyone. Everyone tells me that I need to take control of my health care and that I am the only one that is looking out for me. Guess they are right.


Tuesday, May 12, 2009

IT'S A HEADACHE!?!?!?!?!?!?!?!?!?!

I was having headaches. Nothing new. Just more frequent than normal. I had grown up having more than my share of headaches. So, I went to my Dr. thinking she was going to give me some new migraine medicine. Well, she gave me some new medicine but also ordered an MRI and referred me to a neurologist and told me to return in 2 weeks for a follow up.

During these 2 weeks I go for my MRI, set up an appointment with a neurologist, and develop an excruciating toothache that painkillers won’t touch. So, off I go to my dentist who cannot find anything wrong with my tooth. So, they set me up to see an endodontist. Then, I receive a phone call from my Dr. with the results of my MRI. She says that there are lesions on the MRI indicative of MS but it is probably nothing because headaches can leave the same sort of marks on an MRI. She’ll see me on Friday and she knows I am seeing a neurologist in another week anyway. I don’t give it another thought. Meanwhile, my tooth is still killing me!!!!!!!!!!!!!!!!!!!!!!!!

Friday comes and my tooth still kills so I start looking up tooth pain on the internet during lunch. I find something on Trigeminal Neuralgia. I think, HOLY CRAP, I have this. Then I read that if you are under 50 years of age (I’m 33) and you have this you most likely have MS? HOLY SHIT!!!!! What the hell is MS??? I print out the article and bring it along with me to my Dr.’s appt. She asks how my headaches are and I tell her they are fine especially compared to my tooth. Then I show her the print out and tell her what I think. She says, “Jennifer, I think you have just diagnosed yourself.” Yippeee!!!!!! Do something to take this tooth pain away!!!! So, she gives me a prescription for Tegretol and tells me to call her Monday and tell her how the pain is. I am not kidding when I say that I felt somewhat better by bedtime. By Monday my tooth pain was just about gone with an occasional shot of pain here and there, but nothing I couldn’t handle.

The next week I have my appointment with the neurologist. Literally, I walk into his office sit down and he says that I have MS, he wants me to get aonther MRI, start on Copaxone and go to Rochester to the MS clinic for a second opinion from one of his colleagues but he is sure that I have it.

WOW!!!!! I just had a headache. Now I have MS?!?!?!?!?!?!!?!?!?!?!?!?!? Where the hell did this come from? What the hell is it???

Well, god doesn’t give you more than you can handle so here I am. I better call and tell my mom.