So sorry

I am very sorry for those of you who have been waiting to hear. I am a tax preparer and as you know April 15 is the deadline so I have been swamped.

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!!

Feelin' pretty darn good!!

I have been on the Ampyra for 4 full days and I feel like my walking is beginning not to look so drunk. I know that the core helps with the balance but just walking from the porch to the van seems slightly easier. If you could have seen me walk at home where I just let it loose you'd know what I mean by drunk, in public I fight it so it doesn't look so drunk but in any case it has become easier. It's like when you try on that summer outfit after the winter has come to a close. . . OMG it doesn't fit. You didn't notice the weight gain but it's inherently obvious when trying on clothes YOU KNOW should fit (I know cause it's a problem I'm also dealing with). But I am noticing since I'm looking for it. Anyway, it is actually working. I have however always had back pain I do think it is slightly different though. That is a side effect, but it is one I can deal with.

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.

It's here!!!!!!!!!

Ok so I finally got the script!!!! I'm gonna do the 8 and 8 time frame so I just took the first dose. I am sooooo super excited to finally be on it. I will keep everyone updated daily on how things are going and how I am feeling . . . The only side effect I am looking forward to is the insomnia. . . maybe I won't feel so ready for a nap 24-7. . .lol

I feel like a kid in a candy store. . . Until tomorrow. . . .WOOOOOOOHOOOOOOOOOOO

WOOOOOOHOOOOOOOOOO

It is on the way. So I spoke to someone at Accredo 2 minutes ago and my script is being shipped TODAY to arrive TOMORROW!! It has officially taken 3 weeks and one day to get a confirmation on the actual shipment. Now that I know it's coming I'm slightly more nervous but excited. Kinda like when I was a kid and we were goin to bed early cause we had to get up extra early for a road trip to Cedar Point. I was always a little nervous about riding the Demons Drop even though I had rode it the year before. Then while in line for the first time of the day the butterflies were doin loop-d-loops in your belly. WOOOO

Updates to come. . . . .excitement to last. . . . . .check back soon

Just when you think. . . . .

Just when you think the wheels are turning in your favor you find out they turned the wrong way. Yes the Ampyra people contacted me and said they checked my benefits and I am covered so they were forwarding the script to the pharmacy. That process took 2 weeks. Instead of them forwarding the benefit approval to the pharmacy, the pharmacy now has to verify my benefits. They said they have no information approving the med and they have to verify for themselves. Okay call me crazy but if your working hand in hand with another agency to get a product out don't you think the two agencies should swap that kind of information so time is saved. . . .NOOOOO not these agencies. Now I have to wait for Accredo to verify what has already been verified then they will contact me to verify my info then and only then will they send me the med. . . . .UGHHHHHHHHH Americas medical system hard at work!

FINALLY!!!!

I just received a phone call from Acorda. Her name is Lisa and she said 'your benefits have been approved, you copay is $3.30 for a 90 day supply and your pharmacy is Accredo'. I am one step closer to acctually receiving this med!! I have had some extra time to think, I am not rethinking taking but I am rethinking taking it. Here's where I am at. My neuro says I'll know within 5 days if it works. . .okay. . . extended use MAY allow it to work better but I think if I don't see something almost immediately I will stop.

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!

I am beginning to wonder. . . . .

I am beginning to wonder if the rumors are true! I have searched far and wide (on the net) for a discussion board or some type of banter about Ampyra. I found NOTHING! I have, however, been hearing that Acorda lied about the meds readiness. I am beginning to wonder if that is true. If this is true it is one of the problems I have with drug companies. They don't really care about us, it's their bottom line figures they care about. . . . .Hmmmm. Here's my theory. . . .I think they said 'Okay it's ready' so they could get a count of people ready to try it. Meanwhile they are in production but just not completely yet. Anyone with me? I believe once they have a good number of patients then they will begin to distribute the drug. Conspiracy theory. . . lol. . . I know!

My frustration levels are increasing for this reason. The process is supposed to go like this. . . .Dr faxes script to Acorda, Acorda enters it in system and assigns a case manager, case manager gets insurance approval, case manager assigns specialty pharmacy to prep and ship, patient receives drug and begins taking.

Here's the steps I have completed. . . .Went to Dr for eval on 3/9, Dr faxes script on 3/9, Acorda enters script on 3/11, Acorda assigns a case manager on 3/12. . . . . . . .WTF

If this takes much longer I'm the type of person that'll say God put this delay in front of me for a reason and maybe I am NOT supposed to take this med, and I will continue doin as I have been with a few tweeks here and there. So if you know where there is someone, anyone who has begun Ampyra I'd like to hear (or read) what they have to say, direct me to their site please. . . . I will continue to keep you all updated on my path but for now . . . . . .The saga continues

Productivity

Today was an excellent day!! Church meeting went well, a number of conflicts were put on the table and discussed. The test is to see where it all goes from here. The one thing that keeps entering my mind is 'why is it always up to the younger adults of the church to bring about change'. I know the 'seasoned' members can see the non-progression of the church or are they so set in their ways that they are just comfortable enough to see right past it? God made sure I went to that meeting today. He has a way of putting us in the right place at the right time. Ain't he good yall!! You know the saying 'he was in the wrong place at the wrong time' God never lets that happen, it's always RIGHT! Anyway, I was really at the point where I was weighing whether or not my girls are getting their fill of the word or are they just doing as I say and being obedient? Then at the meeting the elephant in the room was discussed! There is nothing going on in the church for the youth. Where is the church going to be in 15 years if we have no one prepared to take on the responsibility of 'havin church'! Thank you Steve for letting your words open eyes.

On the home front we were able to get some yard work and painting of the fence done. Well, the fence isn't done 2 gallons was just not enough. Most of the outside got done and then. . . . .I think I broke the paint sprayer. LOL I was just tryin to clean it. I took it apart and cleaned all the parts then put it back to gether in the same order but something is off. I really hope Home Depot is as friendly as they claim cause tomorrow after church I am heading right down there to ask for help. Otherwise the kids will have to finish by hand and I know that'll be a fight. . . .Oh well. I hope you all have had a productive day and enjoy your weekend. Write to ya soon!

Anticipation

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

Slow process

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,

Have a wonderful St. Patty's day!!

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.

Here's where I start

Since this is my first blog, I suppose I should give you some background about me. I am 36, married and a mother of 4 daughters. I was a average healthy 26 yr old woman in 2000 living in NJ with hubby and daughters when I started seeing double and my balance was WAY off. I am stubborn with myself, everyone else was always more important so I didn't complain or worry about goin to the dr. I mean if I had a headache I took a nap, but if one of the kids felt bad it was time to get to the bottom of it. Well finally after about a month of this double vision I went to the dr. With an odd look on his face he told me he wanted to admit me for more tests. I know you don't get admitted for 'testing' so I told him to tell me what he was thinking or I was going home. He grabbed my toes and pushed my foot straight with slight force and when he did my foot began to shake uncontrolably. He said that isn't normal and I think you have Multiple Sclerosis. I didn't know what that was but I knew I didn't want any part of it so I disagreed and told him I wanted to go home. Please get me disconnected so I can go I asked.
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