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!!!!