Wednesday, April 14, 2010
Anytahoo, how is it going, well the Ampyra has been going good. . . not great (as I, of course expected) I have a little more energy, my leg no longer drags, I don't really know if I am moving faster but I am able to go further distances. I tested it by taking my dog for a walk (a shih tzu, he can't pull too hard). The stiffness is what is kickin my butt. I tried the 5-loxin for the inflammation, don't do it. It caused my stomach to go wacky and it was not a fun experience. I stopped taking it and I'm all better so I have to find something else natural to help with the spasticity. If you have an idea let me know.
It has been 2 weeks since I started and I am improving. My expectations on the rate of improvement were much higher, but I am happy with what improvement I do have. I will soon be done with the tax season and will hopefully fill that time with a business venture I am working on but I promise not to allow so much time between posts.
Have a blessed life, I know I am!!
Monday, April 5, 2010
I go back for a 3 week eval with my neuro on the 21st and we will see what he has to say. I must say though I have the best neuro in the world and he will not push for me to do something that I am not comfortable with or that isn't working just because it is supposed to. He generally gives me what I ask for and encourages me to do the healthy all natural first. Dr. Berger you're awesome, thanks for being mine!
I am going to have to figure out this video thing on here and post a video b4 and after.
I can't wait to start reading some of what others are saying about Ampyra, Good bad or indifferent I wanna know other experiences.
Thursday, April 1, 2010
I feel like a kid in a candy store. . . Until tomorrow. . . .WOOOOOOOHOOOOOOOOOOO
Wednesday, March 31, 2010
Sunday, March 28, 2010
Wednesday, March 24, 2010
As I said before, I try to cleanse and live all natural, this is gonna change that but I still won't take the muscle relaxers. Is there anyone you know that is 'holistic' or someone out there that takes Boswellia (Indian frankincense). For those of you who don't know what it is, it helps with the inflammation, rather than a constant supply of ibuprophen (pure chemicals). The inflammation is the reason I am so stiff. If I could find something to reduce the swelling I would be in GREAT shape!
In other news. . . .my new shoes should be here today! YAY!! I cannot wait to get a great sunny day to wear my dress and my new wedges. . . .woohoo!
Tuesday, March 23, 2010
Saturday, March 20, 2010
Thursday, March 18, 2010
Back to hitting the books. I don't envy high schoolers. . . . My kids are happy I have homework tho. . .lol
Just got off the phone with patient support and they are falling further and further behind. I don't envy them right now either. They do have a tough job and I do understand that really.
Know me a little better. This new med is to improve walking speed. In my mind I take it a little further than that. I see it as a therapy that can help with a load more than just walking speed. Let's think about this logically, if it fills the gaps (holes) in the myelin and allows signals to go from the brain to their destination then. . . . .(here's where my brain starts clickin) If this works it should help more than just the walking speed right. I mean if the gaps in my myelin are causing the stiffness and everything why wouldn't it help it all. I know I have to build up the muscle that I've lost but that's not difficult with discipline. So let me show you what I bought. . . .
Ok, I know what your saying they are a lil high but I currently wear 2" heels and I attempt my 3" peek toe boots with a slightly wide heel. I mean look at them they are cute and I already have a dress to wear with them. I'm not completely illogical, I have 4 daughters that could be a candidate for them IF and only IF I absolutely cannot wear them. Plus I am no stranger to wearin heels and walkin with my cane. And my hubby has restricted me from using ebay for a while (I like my hair and shoes what can I say). Love me as I am. . . .lol
Wednesday, March 17, 2010
Well at this point I am getting more and more anxious while the process is getting slower and slower. Because this med is brand spankin new the company developing it is being overwhelmed with prescriptions to get approved by insurance companies and processed then shipped. I am in the approval stage. Because I have medicare there isn't a problem with the insurance it's just the waiting that's killin me right now. I understand they are swamped with responses for the med but I think preparation is key. If they knew this was a possibility I think they should have hired a ton of people and if the it turned out the work wasn't there then hey let's get rid of some of them. And now that they see the response is overwelming they are hustling to get the work done and of course like everyone else I feel like I am the most important one and they should work on mine first. (i'm really not that cynical, honest i'm not)
Where are we in the process you ask well here's what they told me. Last Tuesday was my appointment the nurse faxed the script in Thursday I called the Ampyra people and they said I was in the system and I would hear from my case manager within the next two days (business days of course), well I didn't hear from anyone Monday so I called them on Tuesday. They said they are super swamped with all the requests for this med and they are working as quickly as they can. I know patience is a virtue but I am anxious to get started. According to my neurologist I will know within five days if this is for me. I have waited for this stuff for 2.5 years it had better work!!
Other than the waiting game nuttin is really goin on. I start an online course today for grant writing. I am hoping to be something like a consultant. So that is exciting for me. I will keep posting daily with my saga but for now,
Monday, March 15, 2010
Today was a pretty average day. I can't wait for the weather to warm up though, the stiffness is kickin my butt. My husband (Prince is his first name but don't tell him I told you he hates it, we call him Andre) and I ran some errands in his truck. Try this image: Me with a pronounced limp and an extremely stiff right leg hoppin up into this pick-up that's a jump of bout 3 ft off the ground. Funny, I know I laugh every time I get in it.
I figure since my day was pretty uneventful I'd post some pics of my family. I mean unless you wanna hear bout how I cleaned 1/2 the fridge and some of the dining room. Oh and watch 2 episodes of House on the dvr. Anyway above is my hubby and I and the there's my 16 yr old Tatiana on vacation countin her tickets after hittin up the arcade. The other is my brother Danny and my youngest Kayla at Kalahari. Below is my 15 yr old Latania chillin by the fireplace in the hotel. Also below is my 19 yr old Kanisha on the ride home from Florida.
Sunday, March 14, 2010
I go home and called my parents, who are in Pittsburgh, PA. Hysterical I tried to explain what was going on. I ended up returning to the ER and getting admitted for a 5 day run of steroids. Now I'm feeling great and just know that dr was wrong so I call my cousin, Dr. Gates, he tells me to go to the neuro clinic in Pittsburgh for a second opinion. I mean this was shortly after Montel Williams went public with his bout and he said it took years for dr's to diagnose him, and I get diagnosed the first time I see someone. Yep, the dr's were wrong about me. A month later I go the the neuro clinic in Pittsburgh and they tell me it's definately MS, but it's manageable. That settles it, I'm moving back to PA. I took their injections for 7 yrs and in that time I progressively got worse, and consistently too. I mean every year in Jan or Feb I was on IV steroids. That just didn't seem right to me so I finally made the decision that the injections weren't doing their job and I quit. I began to do research and find things out for myself. If the injections were supposed to slow it down and I wasn't EVER feelin good then maybe it's the wrong course for me. Right? I thought so. I began to take lead in my care and stop following. I read books and the comonality in these books was all natural. I did this for 2 yrs and it helped some but my legs still got worse. I'm sure part of that was my fault, I did the diet, vitamins and supplements as well as the Candida killing thing but the exercise was just not as frontline as it should be so the consequence of that is week legs. Today a symptomatic drug has been approved for the first time and I have anxiously awaited its arrival for 2 yrs. Fampridine-SR is here! Of course they changed the name to Ampyra but I'm gonna try it. I thought since I planned to try this you might enjoy the ride with me. For those of you who don't know what Ampyra is let me explain. It is a drug that has been experimented on for nearly 30 yrs for its effects on MS. It is said to help speed the walking. I call it a jumper or a filler, depending on the mood i'm in. As I understand this med it is to fill the gaps in the myelin to allow the signals to go from the brain to where it's supposed to go without shorting out along the way. Jumper the holes or filling the holes. I am starting this med sometime this week and I am very nervous because the biggest side effect is seizures. Now they don't just come from taking the med but they come from messing up the timing of taking the med. Here's what I mean, it is a slow release med so I MUST take it diligently every 12 hrs. This does not mean every 12.5 hours then 11.5 to match, it means every 12 hrs. I have talked with my girls and they are on alert that if my alarm goes off to take it, get me and give it to me immediately! My neuro says I will know within 3-5 days if this is going to work for me. So here's what I would like from any follower of this blog, prayer and support. And occasionally nudge me to exercise. Thanks for reading and I'll try to post daily