MIA

OMG...I have been MIA for so long! So here's a quick update...still on Tysabri..feeling OK. Dr did new set of MRI's. no new or inflamed lesions, but old ones still there and still the same. Told him about left side being all out of sorts lately. Took x-ray of shoulder, trying to see if maybe bone spur or torn rotator cuff, but he said knowing me, and my history of things not looking like they are part of MS but doing all other tests only to find out it is, we will take it as it comes! Other than that, feeling OK, not great, but I keep my spirits up as much as I can. It helps to have a loving hubby and a daughter who keep me laughing and smiling!

Tysabri

I started my treatment yesterday. Came thru with flying colors! No side effects, just a little headache at night but nothing so bad that I couldn't handle it. C came with me so that I wouldn't have to handle sitting by myself for 2 hours! It was nice having him there with me. We watched TV, talked and laughed. After 25 years of marriage, all it's ups and downs, I love when it's just the 2 of us talking and laughing, knowing that he is right by my side, thru all this crap!

Dr. T stopped in while I was having the infusion and told us that new numbers came out on the side effects for tysabri and that they are saying that now patients should only take it for 2 years, take a 6 month break, then resume, but since I am only just starting, we'll deal with that when it comes.

Told him how I did this past month with no meds, feeling like crap and symptoms being more pronounced, he said that's normal and hopefully now that I've started tysabri, it should get more tolerable! Just what I need, more of that same ole some ole!

Well, that's it for today. Tomorrow is Halloween and I'm hoping since it's a Saturday maybe I'll actually get some trick or treaters! :)

Remember, always laugh out loud, love deeply, and dance as if no one is watching!

New meds for me....

Wow can't believe another month has gone by. In that month alot has happened, new symptoms appeared and the Dr thought it was something other than the MS so another round of MRI's and an EMG told the doc what i told him, it's the MS. So now I have to go off my shots for a month and then start a new therapy, which in a way i better because it's only 1 infusion a month instead of a shot a week, but there is the potential to develop a very serious disease called PML. Although I will be closely monitored while on this new drug. MRI's every 6 months and also blood work. We shall see how this works out. Remember, always laugh out loud, live life to the fullest, and love deeply.

another round of MRI"S

It's been a rough 2 weeks! Thinking I wasn't feeling myself because of the heat and humidity, I just hydrated myself and tried to stay cool. Then last Friday, I got out of my car and fell, went down on my right knee and banged it up pretty good! Thought I probably slipped because it had rained and didn't see the water. But then on Tuesday of this past week, I was putting away clothes in S's room and I went down again, on the same knee except this time I couldn't catch myself and wound up hitting my head. Nice scrap on my forehead, actually looks like I burned myself with the flattening iron! So I called my neuro and went to see him on Friday. He wants to repeat my brain MRI's, there is a tremble in my left arm that usually is a sign of more lesions. Once he gets those results, then he'll see where he wants to go with treatment, meaning a new med. FML I just want to feel semi-normal. I want to be able to go up or down a flight of stairs without wincing in pain. I want to hold a cup of coffee for longer than 2 minutes without my arm hurting, or go shopping and walk the mall without getting tired. I follow the Dr's directions but I never feel any better. Why? Maybe this is just all part of God's overall plan for me. They say he never gives you more than you can handle. I hope he doesn't give me anymore, I'm not sure how much more i can handle. :)

another week

I have been so slacking in my blog, but I haven't been having the best of weeks! First off, the heat and humidity has been keeping me like a prisoner because the minute I do go out, I wither! Secondly, I had a bad reaction to my steroid treatment on Monday. My lips went numb and my face swelled. My Dr.'s nurse gave me benydryl right away but made me stay in at the office for an additional 25 minutes to make sure I didn't go into anaphalatic shock! Told her I'm fine, C was waiting for me in parking lot, but she wouldn't let me leave. Made me call C to let him know what was going on and kept me there! After the 25 minutes were up, she let me leave but made me promise to keep in touch with her. After being in the office for over 2 hours, I just wanted to go home and sleep, but C thought we should do a little shopping, so we did, then I came home and crashed!

On Wednesday, I drove to SI to see my godson A, he was getting ready to leave for college, and my bro was taking him out to dinner, so I went. I can't believe how quickly they grow up! He's become such a fine young man!

On Thursday, S called me from work to let me know she was going to Dr because she wasn't feeling well, turned out she has an ear infection, upper respiratory infection and maybe strep. Poor kid! But I know she really wasn't feeling well because she actually went to the DR! Hopefully she will feel better soon.

So, tomorrow starts another week. Hopefully it will be a better one for all of us!

Live, Love and most of all LAUGH!

Another day!

So another Crappy day in MS land. I've never had the heat and humidity bother me so much! my eyes feel like they are burning. If I was mad at someone I could probably burn them up! My body feels like a steamroller went over me. So another day basically just chilling. I did go for a Mani and pedi first thing this morning before it got to hot, so YEA for me.

On a brighter note (for me anyway) S comes home tomorrow. I've missed her! I know she doesn't want to come home, but who would after 5 days in Miami with her AC and UJ, laying on a beach and catching rays! I know I wouldn't! C if you read this, THANKS THANKS THANKS! She loves to be with you and J and to have her for 5 days means so much. MUCHOS LOVE!!!

So now I'll go make coffee, lay in bed and play some games on the computer because CJ is away til Sunday so I don't have to be uncomfortable on my couch!

HHH

What a crappy day! Besides getting my shot and feeling blah, it is the 3 h's here in NY. Hazy, Hot, Humid...the 3 worst things for a person with MS! So I basically laid on the couch all day doing nothing! I hate when I feel this way especially when I know that there is stuff to get done. but my body did a total shut down so I was useless! Hopefully tomorrow will be a better day! :(