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.

Friday, September 25, 2009

Still nothin!

Still haven't heard from the neurologist.

Has anyone seen my life?

I seem to have lost my life. I feel consumed with this disease and I am tired of this. I am more laid back , I am not this type of person but it seems that my life revolves around MS? How did this come to be? I am ashamed that I have become this. I need to straighten things out and start being me. I used to go get pedicures (more often than I would like to admit) and I never even feel like doing that. I am fine with having MS and I know that it will affect my life in certain ways but my life shoud not revolve around it. I can't tell you the things that I haven't done since I have had this disease. The things I am just too tired to do. It really is pathetic. I used to be this independent always on the go, take care of everything type of person and now I'm more of a one thing at a time person. I know that people love me and want the best for me but I am sick of them trying to go easy on me and take care of me, worry that I'm tired or I'm over doing it. I used to take care of everyone. I miss that. I want to be the taker carer again.

Thursday, September 24, 2009

I called

OK, so I called and left a message for my neurologist. I don't know why I am hesitant to do that. She always says that it is better to contact her through e-mail but sometimes she doesn't answer me and other times she answers right away and I cannot figure this out. It bugs me because why does she think I'm telling her? Just to tell her? I really would like an answer even if she just says wait a week and see how you feel. Just some acknowledgement that she has seen the e-mail. Give me something.

Wednesday, September 23, 2009

WHY OH WHY?!?!?!?!?!?



So I am driving to work Monday morning and I am petrified! It is like there is too much going on around me and I am only able to concentrate on one thing at a time. It is terrifying! What the hell is this feeling? It is a confused out of body type experience that I can't even describe. AND my lips are numbish. Like the feeling when you have novacaine and it is wearing off and it is kind of prickly and itchy. That's the feeling! Honestly, I kind of like it. Well anyways, I haven't driven since. My coworker (and BFF) drove me home (Bless her soul) from work and has driven me since. Thank god! Even though it is not like she lives close or anything. She drives me out of the goodness of her heart. What love!!!! So I have been dizzy ever since and unaware of what is going on around me. Yesterday during the day my whole body felt tingly and strange. I don't like this feeling. It is hard to describe but I was walking down an aisle at Rite Aid last night and I look at the products on the shelf while I was walking and almost fell over because there was too much to see so quickly. It is weird. It is like my brain has slowed down all of a sudden. My legs feel weird too. My husband says it is because I am so tired but I really don't think so. They almost feel weak but not really. Kind of tingley. I don't know. I e-mailed my neurologist on Tuesday and I am waiting to hear from her. We'll see.

Tuesday, September 15, 2009

Feelin pretty good!

I finally got in to see my neurologist. I love her. She gave me a new med for the stabbing headache and it seems to be working. She also said I could try to go off the tegretol and baclofen and see if the neurontin will be enough for the trigeminal pain. So far so good! I am way less unsteady without those two drugs and I seem to tolerate the neurontin pretty well. In general I am feeling pretty good lately which totally rocks!

The weirdest thing happened to me last night. I read in bed everynight until I get so tired that I am reading with one eye shut because I have double vision, and just when I was putting the book away to go to sleep I noticed that everything was really dark when I looked out of my right eye. So I went back and forth covering each eye to see what I could see and it was definitely way way darker out of my right eye. this is not the first time this has happened but I ignored it a couple times before and chalked it up to tired eyes. Should I be concerned about this? Is this an MS thing or were my eyes just tired? My eyes are fine right now. I have never had any eye trouble. I think I am going to pay better attention to this and see (haha) what happens!

I went to Cirque du Soleil Alegria! this past weekend. It was awesome! I love all the Cirque shows. They are just amazing. The things that the people in them can do are so unreal!!!!! If you ever have a chance to go to one definitely go!

Thursday, September 3, 2009


I woke up really early Monday morning with what felt like my normal headache from my Rebif shot the night before just a little worse than normal. Well, as the day wore on, the headache got worse and worse until I literally couldn't take it and I'm not that big of a wuss. I can usually take a fair amount of pain. This headache has lasted all week. It is a bit better now and I actually went to work on Thursday and today. I contacted my GP and they didn't help me at all. They told me to contact my neurologist. So I contacted her and she is trying to squeeze me into her schedule because she is full up. She did seem concerned though so that is a bonus and perhaps she'll give me some relief.

Because of my headache, I have not been to the fair yet and I am dying to go. Speaking of the fair, my brother opened for The Fray at the grandstand. I guess their opening act cancelled so the promoter or whomever had to scramble to get a replacement so they called his band. Cool right? He was psyched!

It is supposed to be a great weekend and I so hope my head is better and I can go to the fair. Keep your fingers crossed!

Wednesday, August 26, 2009

The Fair!

The NYS Fair is coming. It starts tomorrow. I love the fair. I am hoping to go on a cool night so I can just "chill" and have fun. It is only like 5 miles from my house so that is a bonus too.

It seems though that I always used to have much more fun at the fair than I do now. Maybe it is because of the drinking that used to be done but I hate to think that alcohol would make it more fun. I mean, I'm fun and I don't need to drink to be fun or have fun. Who knows. I still love the fair.

I always have a list of food I want to eat at the fair. First there is the Gyro (no onions). They are the best at the fair. Next is butterfly chips with vinegar and ketchup. Then is fried dough from The Villa. It is like 2 foot long strips of fried dough covered in sugar. And that is usually more than I can handle.

The above mentioned food is the reason why I will be joining Weight Watchers in a couple of weeks. Til then eat up!

Monday, August 24, 2009

Feelin Peppy!

I woke up on Saturday feeling awful. BUT, I had asked my BFF to go to lunch the night before and I really wanted to go. Well, I had a great time. We went to lunch and a couple of stores. I had forgotten how much fun I have with her. I have realized that I need to get my head out of my butt get back out there and do stuff.

When I feel bad I hibernate. NOT GOOD!!!!! I need to stop this behavior, It's bringin me down. I'm generally a peppy person but lately I have been melancholy and monotone. I need to brighten up . So I am going to pop a provigil and have at it!!!!

P.S. Provigil is a wonder drug. It makes me talk a mile a minute and gets me through tough, tired times. I love it!

Thursday, August 20, 2009

FYI: feeling good rocks!

I've had a few good days lately. Feeling pretty good and not nearly as tired. I think I forgot what it felt like to feel good. FYI: Feeling good rocks! It has been so long since I have felt good that when I do feel good I am like a crazy person running around doing everything, kind of scattered, jumping from one chore to the next. Ultimately I end up doing too much, making myself tired but Hey, at least I got done what I got done. I think I have even been talking faster(if that is possible).

Thursday, August 13, 2009


Yesterday was my mom's birthday!!! YAY MOM!!! She turned sixty. She requested to go to the casino. We go like twice a year, my mom and I lose, my sister usually wins and then we leave. We also went to The Inner Harbor in the evening for a free concert, The Marshall Tucker Band, my brothers band opened for them so that was cool. It is also good that my mom got to see my brother play because she misses most of his gigs.

My mom leaves tomorrow which sucks because it is pretty fun having her around. I don't remember her being funny as a kid but she is hysterical! Funny how things change as we get older. I hope she moves here soon because we all miss her and want her around all the time.

Tata for now, gotta get back to work

Thursday, August 6, 2009


My mom is here visiting from Florida!!!! Hurray!!!!! She is bound and determined to take care of me. She constantly wants me to take a nap. She is so funny. You should see how clean my house is. She IS the Queen of clean! In one day she cleaned the entire house stem to stern. It shines like the top of the Chrysler Building! It is AMAZING! She rocks!

I totally overdid it on Wednesday and I am so paying for it. My husband is going to the NASCAR race in Watkins Glen. He goes every year. They always leave on Thursday and come back Sunday night. They rent a huge winnebago. I make all the food for all of them. This year there is 5 guys. There are usually 4. It was just too much for me this year. I really like to do it for my husband because he works all the time and this is his weekend to just relax and hang out with his buddies, no girls, lots of drinking. But holy crap am I wiped out!

Good thing my mom is here because she can baby me and I can sleep! I love that woman!

Friday, July 31, 2009


I'm out of pain! YIPPPEEEE!!!!!! I emailed my Dr. again and she adjusted a few more things with my medication and it worked! I am still a little out of it but my friend is picking me up and taking me home from work so that I don't drive until I adjust to the meds. Which is extremely above and beyond nice of her. Now I can chew again and eat! I love eating!!!!

Tuesday, July 28, 2009


YEEAAA!!! My Dr. e-mailed me at 5 Monday morning and told me to increase some of my meds to help the trigeminal. So I did what she said.

Eureka!!! Finally the right cocktail of drugs to relieve the pain!!!! YAHOO!!! Except, I am dizzy and my body feels fuzzy. Like when you go to the dentist and get nitrous oxide. I feel like that all day long. Which is kinda cool except I am at work and I have to drive home. Not good!

She also told me to go back to my original dose if I experience any side effects. Damn! Well, I did this today and I am back to the pain. Help! Somehow, you get used to the pain so when it subsides and then comes back it seems worse. What the H am I gonna do now???

Friday, July 24, 2009


So it is now Friday and I truly am miserable. I am in so much pain. My neurologist upped my Tegretol and gave me a prescription for Baclofen and I am already on Neurontin. Nothings working. My tegretol ALWAYS helped the pain in the past. My neurologist wanted me to e-mail her last night to update her on my status. I am just waiting to hear back from her. I have no idea what could be next. She has to do something because I want to go to the hospital and ask them to knock me out for a week or two. I wonder if they would do that? Now that it I say it out loud, it really sounds like a good idea. Maybe I'll propose it to my Dr.

My husband has been researching all kinds of treatments. I have been calling him House because he seems to know more about this than me lately. He found this Gamma Knife thing that is a radiation treatment for Trigeminal Neuralgia and a bunch of other things and they do it right in the hospital that my neurologist works from. Maybe she'll know about this. Well see I guess.

Well, I am going to go read. It seems that if I can get myself absorbed in some fiction world I can somewhat ignoe the pain and I feel temporarily better.

Monday, July 20, 2009


I had my wisdom teeth out and now I am in excruciating pain 6 days later. I have been since Saturday. It is horrible. I went back to the oral surgeon thinking I had dry socket or something and he says - "Everything looks great, good color, healing nicely. I removed a couple of stitches that hadn't dissolved yet you are probably having a reaction to the stitches. I flushed the area. You should feel better in 20 minutes or so." Well, I DO NOT feel better 8 hours later. So I am pretty sure this is my trigeminal neuralgia. This is the worst pain ever. I had this pain when I was first diagnosed with MS. I had forgotten how much it sucked. I guess I must have blocked it out because this pain is unforgettable. I am miserable and unable to eat or sleep or anything!!!!!! I have e-mailed my neurologist so we'll see what happens. Let's hope for a quick fix.

Wednesday, July 15, 2009


My wisdom teeth are gone. I look like a chipmunk. My face is so swollen and it hurts. I guess it was a bad idea to add pain to my current state of horribleness. I AM a glutton for punishment. It is official. What was I thinking. I even went to work today. I am so swamped at work I had to go. Everyone was wondering what I was doing there. I guess I must have looked really crappy.

When I was at the dentist on Tuesday my neurologists office called and said the DR. wanted to see my Friday at 8am. WOOOHOOOO! I'm sure she will make me all better. At least she'll figure out what is going on with me. Can't wait!

Monday, July 13, 2009


The vacation is over. I went back to work today. Not that it was much of a vacation since I basically slept through it and felt yucky the whole time. I'm feeling a bit better. At least I am able to stay conscious for hours at a time and function.

I actually missed being at work. The activity, the people. I always think that I want to quit working and stay at home but then I have time off and realize that I really don't. Besides, I have great insurance and that is so important!

I get my wisdom teeth out tomorrow. Yippee!! As if I didn't feel bad enough. I swear I am a glutton for punishment. I have been waiting so long though. I just want to get it over with. I'll give an update of how goes.

Thursday, July 9, 2009

SLEEPING IN TORONTO! and ever since

I haven't written lately because I have literally been asleep. I finished with my last steroid treatment last Friday just in time for a trip to Toronto with my husband for my birthday! I was very excited! We haven't seen enough of each other lately. Well, I made it up there on Saturday and then Sunday morning we went to The Hockey Hall of Fame but after that I was asleep. I slept from like 2 Sunday Afternoon through to 10 Monday morning. My poor husband was left alone to hang out in the hotel while I napped. Then we drove home and I slept through that and I have pretty much been sleeping ever since. Is this a steroid crash? I have had steroids 3 other times and have never been affected like this. Is there something else going on with me? It is now Thursday and I have slept at least 18 out of 24hours a day everyday this week. This is so unlike me. I am not a sleeper like this. I have everything I can do to stay awake. I am so tired that I just really don't feel good. I tried to e-mail my Dr. but she is on vacation until the 14th and I really haven't been awake enough to get a hold of anyone else. I am very glad that I took this week off from work so I didn't have to feel guilty for all of this sleeping or for calling in sick to work because I know that there is no way I would have made it into work feeling like this. I am forcing my self awake right now because I need to go to the store to get some floor cleaner and a few other things I have not gotten all week that are on my list of things to do. This is a horrible feeling. I had huge plans for this week off and I haven't accomplished anything.

Friday, June 26, 2009


Ok so I called the nurse and left a message to find out about my steroids and she called me back and said " Thank god you called, they should have called you by now! Apparantly Lincare said that they never received the fax. So the nurse refaxed and then called to make sure they received the fax. When I got home from work there was a call from Lincare on the machine to set up my schedule. YAA HOOOO!!!!

Wednesday, June 24, 2009


OK so I am still waiting for the steroid treatment. I called on Friday to see what was going on and the nurse said that Lincare should be contacting me anytime now. How long should I have to wait? I feel like a pain but I really want to feel better. It was last Tuesday when she got all my bloodwork back and decided to give me the steroid treatment. I guess I'll call again today even though I feel like a jerk bugging them.

Sunday, June 21, 2009


My friends wedding is over. My Matron of Honor duties are over. It was a beautiful wedding. The bride was beautiful. The bridesmaids were beautiful. The groomsmen were handsome. It went off without a hitch except that it poured all day. But she didn't care so no bid deal. It only affected pictures.

It was a long tiring weekend for me. It started Friday morning and ended Sunday afternoon. I couldn't wait to get home and collapse. I just kept my game face on and never let anyone know that I was ready to fall over from exhaustion. It is so hard for me in situations like these where everyone is going going going. It is so much easier for everybody else. My husband thinks it is amazing how I can be ready to keel over and then just put a smile on my face when other people are around like I feel like a million bucks. But it is all an act. It takes a toll. So by the end of a weekend like this past weekend I'm ready to crash.

Most people don't understand the MS kind of tired. They think they do but they don't. They can't unless they have it. It's horrible. But I think what is worse is that I am getting used to it and it feels normal now!

Wednesday, June 17, 2009


I feel horrible. No new news there! Last night, well, this morning at 3:00, I was awoken by this horrible burning/throbbing awful pain in my legs. I have never experienced this before. Now, I don't think of myself as a wimp but OMG it was so uncomfortable! I did everything to get more comfortable but it wasn't happening.

When my husbands alarm went off at his usual 4:00am, I was like "good mornin!" I scared the sh** out of him. I'm usual comatose at 4am. I was still up at 5 and 5:30. I couldn't sleep it was bothering me so much! I just got up and went in to work really early. Now it feels better moving around but not normal. I can't wait for the steroids!

Friday, June 12, 2009


I heard from my neurologist. See, I freaked out for nothing. I always forget how much I like her until I see/hear from her the next time. She is awesome. She totally reminds me of Ziva on NCIS. She has an accent. Not so that you can't understand her but her phrasing isn't always perfect. I just love her. So endearing.

Anyway, she is putting me on a round of steroids, AND she is setting it up so it is in my house. cool, right? I've never had that before. Lets hope it works.


Our friends mother just died. She was 98 years old so it wasn't a shocking loss but sad all the same. She was living on her own just 2 years ago and had a few falls so they had to put her in assisted living and then just a couple of months ago they had to put her in a nursing home because she needed more assistance and it has been down hill since then.

It's strange when you look at the different lives around you how everyone is at different phases. I mean, my friends just lost their mother, one of my co-workers has a brain tumor, my other friend is getting married, my brother and his girlfriend are buying a house, my husbands friend from high school is battling ITP, someone else is having a baby.

I also find it amazing how some people in their lives have never really experienced any misfortune while others have had a lot of misfortune in their lives. Why is this? I believe that god doesn't give you more than you can handle. Is this why?

I would love to believe that it is dependent on how good a person you are but I know too many great people that have suffered horrible losses/tragedies in their lives. I also know some not as wonderful people that have never really suffered any great losses/tragedies in their lives. So who knows.

It is also amazing how certain people deal with certain things. I mean something that is a mind blowing a tragedy to one person can just be a bump in the road for another. I know people that cannot deal with the smallest set back while others cope with life changing events as if they handle it every day.

I guess it is the differences in people and personalities that make the world go round.


So, I e-mailed my neuro yesterday morning. I can't take it anymore. I feel horrible. I am exhausted beyond exhausted. I don't know if this is the Rebif or a lesion or what but I asked her what she thought was going on with me. I haven't done anything lately except go to work and then come home and crash. I am a barrel of fun, fun, fun. A regular riot!

Now I am obsessed with my e-mail checking it every 1/2 hour to see if she has responded. Now I'm even thinking that I must have typed in the wrong e-mail address. Any excuse as to why she hasn't responded yet. Hello.....She has other patients and other things going on. I think I have issues!

Tuesday, June 9, 2009


I don't feel good. I was driving home from work last night and this wave of exhaustion came over me where I could barely hold my head up. I'm not exaggerating. It took everything I had to make it home from work. This is the first time I have actually contemplated pulling over and calling my husband to come get me.

I can't stand feeling like this. It puts me in such a funk. Has this ever happened to anybody else? Whenever I am this tired for any length of time I seem to get sad or depressed. I don't deal with it very well. I have to work on this. It's awful!

Monday, June 8, 2009


I have the greatest husband in the whole freaking world. Seriously! He is so nice to me. I mean, he knows how tired I get and he totally understands and he doesn't even have MS. He knows when I am not feeling good just by looking at me and he UNDERSTANDS! I'll even hear him on the phone with his friends like " No dude, she gets tired like you or I have have never felt"or "She has pain like we have never had". He totally gets it. He rocks!


I just found out that someone I know has a golf ball sized brain tumor. OMG. I feel horrible. I can't stop thinking about her. She has a husband and three adolescent age children. What is going to happen to her?

I feel lucky that all I have is MS. Not that having MS is a good thing but at least it isn't life threatening. Granted, it does change your life and make everything more difficult and it can be uncomfortable and painful, but it doesn't end your life. I mean, don't get me wrong, MS sucks especially if you are younger and haven't experienced any of your life without MS.

I was so lucky when I was diagnosed with MS. I didn't have to go through years of tests and doctors telling me that nothing was wrong with me. I was told immediately that I had MS and I never suspected it or anything like it. I thank the trigeminal neuralgia for the quick diagnosis. I thank god not have gone through what most people go through on the way to a diagnosis.

My mom is always worrying about me now and saying it is just not fair that I have MS. She says that I already had mine with cancer as an infant. It is so not like her to be like that. When I had cancer she was so strong. She was one of the people who started the Ronald McDonald House in this area and later became the President of the house.

Not to downplay MS because it is seriously crappy at times but when times get rough just remember that somebody is always worse off than you are.

Friday, June 5, 2009


I woke up in the middle of the night with an excruciating pain in my jaw. It's BAAAACCCKKK!!!!!! The Trigeminal Neuralgia is rearing its ugly head. It hasn't hurt this bad since I was diagnosed with MS. I am going to wait a couple days to call the neurologist to see if it still hurts. Hopefully this doesn't last too long. It is the worst pain in the world. It hurts so bad you just feel ill. I'm hoping I'll be so busy at work that I won't have time to realize how bad it hurts. Here's hoping!

Thursday, June 4, 2009


I started on the Rebif Monday morning. The nurse came to my house and told me a bunch of stuff I already knew and we did the first shot. I didn't feel a thing. It was great. Much different than my Copaxone where I would get a giant welt instantly that itched.

Monday night I felt terrible. I had a headache and my body ached all over and I was really really tired. I just thought that I was over tired. So, I just went to bed early and when I woke up I didn't hurt anymore. Still tired but I didn't hurt anymore.

Last night (Wednesday) my husband woke me up at like 10pm and gave me my next shot. I went right back to sleep, didn't feel a thing. I got up this morning and I feel horrible. Achy all over, headache, and I am ssssoooo tired. Is this the medicine? Are these the flu like symptoms they talk about? I hope I get used to this medicine in a hurry. This kinda sucks!

Tuesday, June 2, 2009


I have been trying to give up drinking soda lately which shouldn't be that hard since I only drink Diet Pepsi and Diet Mountain Dew and I usually only drink 1 can of soda a day. But Yeah right it is sooo hard!!! ! Water gets really boring. I love water but not as much when I don't have the option of drinking soda.

Isn't it always the way. Like if you are on a diet, all of a sudden you will crave something that you haven't had in 10 years just because you can't have it. (like peanut butter and fluff sandwiches) I think I'll just give up giving things up!

Monday, June 1, 2009


It's over. The party I threw was a success. The Bride and Groom to be were happy. Everyone loved the food and had a great time and it is OVER!!! Thank the sweet lord!!!!!! I am whooped!!!.

I woke up today as tired as when I went to sleep and my whole body hurts. What gives? AND, I got sunburned yesterday at 10 am!! In CNY? A sunburn at 10 am?!?!?!? It wasn't even hot! It was sunny but I was freezing. I had a hoodie on (with the hood up) and capri pants and I was cold. I sat in a lawn chair for like 45 minutes reading a book and the bottom half of my legs are scorched. My freaking ankles are swollen that's how burnt I am. What the H?!?!?!?!?!?!? I am super sensitive to the sun all of a sudden?!?!?!?!?!!?!?!?!? So along with my normal aches and pains I am dealing with a killer sunburn. SWEET!!!!

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.