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! :(

long week

So it's been a long week. C came home from DC and we were supposed to go to my brother's shore house, but things with his job became complicated and we didn't go. :( I guess all the stress attributed to how I felt this week. Legs felt like a ton of bricks and the numbness in my feet felt like I was walking on a hive of bees. Lots of pain in my joints too!

Thursday S left for SI to meet her bff J because the 2 of them were jet setting off on Friday to Miami to spend some time with Aunt C and Uncle J. She won't be home until Wednesday and I miss her already! But she needed some time away and with Aunt C and Uncle J she will have a blast.

C starts another work detail away from home. I think I'll do my shot on Monday and then head to the beach with JackAs long as V doesn't mind and Mom and Dad are still there. And as long as I feel good.

Have a good week everyone! I know I'm hoping to.

The Weekend

Had my niece and nephew for the weekend and even though they are older, what a toll when you're used to being by yourself! I forgot that they should actually eat breakfast, lunch, and dinner! When I'm by myself, I just eat when I'm hungry, but with kids, you have to remember to feed them! When S is home a she wants something she just gets it herself! So I guess I won't win Aunt of the year. So around 3 I took them to Applebee's for something to eat and told them this is what I call Linner, and that when we got back to the house, I had their favorite ice cream and we can make sundaes, with oreo's, hot fudge and caramel, so that gives me some brownie points! Hopefully they won't bitch about me to their mom and dad too much! So now I am going to try and rest and get my strength back for tomorrow is shot day! Have a good one!

Disease Diagnosis In Just 15 Minutes?

Hello blog land. It's been a while. Feeling OK. Can't tell if the new solumedrol treatment is working or not. Have to wait to talk to Dr. on Monday and tell him how I'm feeling. Until then I just keep trudging along. C has been busy traveling, Philly last week and DC starting tomorrow. DC is a long trip - 10 days - and he'll be away for his birthday! But when he gets back, it's the beach house for us for 3-4 days! :) Can't wait. S is going to Miami to visit her favorite aunt and uncle for some R & R with her bff J. Going to miss her, but she needs some quality time for herself.

On other news I found this article on one of my MS blogs, thought it was interesting. Wonder if it'll ever happen?!

Disease Diagnosis In Just 15 Minutes? BiosensorBiomarkers
Technology Uses Antibodies To Detect Much Faster

ScienceDaily (Oct. 1, 2008) — Testing for diseases such as cancer and multiple sclerosis could soon be as simple as using a pregnancy testing kit.

A team led by scientists at the University of Leeds has developed a biosensor technology that uses antibodies to detect biomarkers – molecules in the human body which are often a marker for disease – much faster than current testing methods.
The technology could be used in doctors' surgeries for more accurate referral to consultants, and in hospitals for rapid diagnosis. Tests have shown that the biosensors can detect a wide range of analytes (substances being measured), including biomarkers present in prostate and ovarian cancer, stroke, multiple sclerosis, heart disease and fungal infections. The team also believes that the biosensors are versatile enough to test for diseases such as tuberculosis and HIV.
The technology was developed through a European collaboration of researchers and commercial partners in a 2.7 million Euro project called ELISHA. It features new techniques for attaching antibodies to innovative surfaces, and novel electronic measurement methods that need no reagents or labels.
ELISHA was co-ordinated by Dr Paul Millner from the Faculty of Biological Sciences at the University of Leeds, and managed by colleague Dr Tim Gibson. Says Dr Millner: "We believe this to be the next generation diagnostic testing. We can now detect almost any analyte faster, cheaper and more easily than the current accepted testing methodology."
Currently blood and urine are tested for disease markers using a method called ELISA (Enzyme Linked Immunosorbant Assay). Developed in the 1970s, the process takes an average of two hours to complete, is costly and can only be performed by highly trained staff.
The Leeds team are confident their new technology – which provides results in 15 minutes or less - could be developed into a small device the size of a mobile phone into which different sensor chips could be inserted, depending on the disease being tested for.
"We've designed simple instrumentation to make the biosensors easy to use and understand," says Dr Millner. "They'll work in a format similar to the glucose biosensor testing kits that diabetics currently use."
Professor Séamus Higson, Dean of the Faculty of Medicine and Biosciences, Cranfield Health, and one of the partners within the ELISHA programme, says: "The speed of response this technology offers will be of great benefit to early diagnosis and treatment of many diseases, and will permit testing in de-localised environments such as GP's surgeries."
A spinout company – ELISHA Systems Ltd – has been set up by Dr Gibson, commercial partners Uniscan Instruments Ltd and Technology Translators Ltd to bring the technology to market.
Says Dr Gibson: "The analytes used in our research only scratch the surface of the potential applications. We've also shown that it can be used in environmental applications, for example to test for herbicides or pesticides in water and antibiotics in milk."

Wow...a week?!

I can't believe it's been a week! It's been an exciting one! After my treatment last week and feeling like I was flying on energy, C came home on Wed and said that since his boss didn't need him on Thurs & Fri, and he wasn't scheduled to work over the weekend, why didn't he utilize the condo in Palm Beach and take me away for a few days. Well, Thurs morn he got up, called the kennel and they were able to take Jack for the weekend,



and I went on the Internet and got us a super cheap flight and off we went. We flew out of the rain and into 5 wonderful days of relaxation and sun. We also saw 2 movies, (which we never do at home) The hangover, which was hysterical and Pelham 123. I love John Travolta! He played such a sicko! We layed by the pool and went shopping. All in all it was a great time. The only thing that would've made it better was if I had been able to see my brother, but he had just come back from a business trip and I didn't want to take him away from his wife. Although he probably would've come or I go to see him, I knew how much C misses him when he is away.

Then back to reality...when we landed on Monday afternoon, guess what? It was raining!

But today the sun is out, got my shot and so far feeling good. :)

Feeling OK

I got everything that needed to be done yesterday. Even had my mani/pedi but was there for almost 2 Hours! talk about being relaxed! My nails had to be soaked due to the wraps being on for almost 5 months! They started to lift & she asked if I had time so what the heck. It was the best 2 hours I've had in a long time, plus C had to take my car today, so I'm glad that I was able to accomplish so much. On an MS note - feeling a little better today. Not so much of a energy boost. Didn't get to sleep until 1 am but slept til 6...so not to bad. Bones are a little achy and stiff but I'm hoping with time the steroids will help. Spoke with S yesterday, having a great time on her little mini vacay with her girls. She sounded happy and I'm glad. I love that girl so much, it breaks my heart to see her down. When she smiles and laughs, my heart leaps! <3. Well, since I have no car, I guess I'll suit up and lay in the sun ( even though the heat's not good for me!) but I gotta work on this tan so it looks like I went on a vacay!

Sleep

Sleep is highly overrated! By time I actually feel asleep it was around 5am and then I only slept til 7:15. Boy is it gonna be a long day with so much to do! Hopefully my body will let me get some things done and the rest I'll just save til I'm up to it. I think i'll treat myself to a mani and pedi. That will give my body time to just relax whil I'm being pampered!

Steroid effects

Now I know why I hate steroids! It's 1:10 am and I can't sleep. I feel like I just drank 3 cups of coffee and am pacing back and forth. C keep s telling me to come to bed and I tried but all I did was fidget and the man has to work in the morning so I got back up. Now I don't know what to do with myself!

Steroids

Well, Went for my first steroid treatment today. Forgot the funny taste that you get. All I want to do is eat ice cream and chocolate. OOH fat clothes here I come. LOL Also forgot the energy boost it gives me. Feel like I could go all day. My husband said since I was feeling so good I should scrub all the floors! told him I'm feeling good but not that good! Til tomorrow - remember laugh and laugh deeply.

I do "Shots"

So today I'm off for my shots. One is a regular weekly thing, the new one is going to be every other month. (So I guess I'll only gain 1/2 the weight!) I just hope this cocktail works! Let you know more later.

So this is how i figure I can write down how I'm feeling on a day to day basis. I live each day with Multiple Sclerosis. It's not easy. Not knowing from one day to the next how I'm gonna feel is depressing. There are some days I feel like superwoman and can get almost anything done. Then there are the days I can hardly move, but I go on because that is what I've always done. Then I pay for it later! :( My body usually tells me when it's had enough. It just shuts down. Then I'm good for S***. So anyhow, I wasn't feeling particularly well in may so I called my neuro to make an appointment. After seeing him, he ordered MRI's of brain, neck and spine to see if anything new had developed. Three weeks later...he tells me that all is good. No new lesions and no inflammation. Yeah, but why do I feel so crappy? He adjusted my meds and said if that didn't work, we'll try something else. So I go home feeling all good, and the Dr. calls me 3 hours later. There are new lesions, and they are inflamed! :( He's so sorry he missed them, and that his nurse is setting up for solumedrol treatments! Great so not only do I have to have my weekly shot now I have to have steroid treatments for 1 hour a day once a month! FML. Time to take out the BIG clothes again. I just don't understand this disease sometimes. I do everything the doc tells me too and still it progresses. OK enough.