Wednesday, March 28, 2012

Busy Day

Just wrapped up a busy day. Shopping for an anniversary gift for hubby, then the last night of Lent bible study. Rushed home to run protocols. Still learning to balance running programs with life. Missed my 1p.m.  time as I wasn't home. So I got home at 4:30, ran a program, went to home and just finished running more programs. Payng for not keeping to the schedule. My back pain is worse than it has been for the past week :(  My own fault though.

Thanks to Muff for the author suggestions! Wish you could make it to Texas. Hopefully someday this treatment will be widely available to everyone AND covered by insurance! I know it's turned out to be an absolute blessing for me in regrds to my pain, sleep and MS symptoms. TIme will tell if it helps prevent exacerbations....but you can bet I'll keep you posted!

Tuesday, March 27, 2012

Another Day is Done

Another day is drawing to  close. I just finished running my last protocol of the day. The new machine is working wonders for me. I wish you each could come over and try it! I have found it takes care of my left leg neuropathy better than any dose of Neurontin. My right knee pain is almost non-existent. I'm sleeping MUCH better and even my back pain is more manageable. 

It's doing a great job of managing the SYMPTOMS of my MS. Of course the real test will be determining if I have fewer exacerbations while using the machine. I've been experiencing exacerbations about every 4-5 months. I just had one right before I went to Texas to get the machine.  Wouldn't it be wonderful if the machine is actually able to help control the actualy disease process of MS. Time will tell.

I'm still learning how to juggle my everyday activities and running the machine every 4 hours. Seems there just aren't enough hours in the day to get everything done.  It can be a bit frustrating to have to plan everything around running my protocols, but the benefit far outweighs the frustration. 

Another thing the machine forces me to do is RELAX. It means that at least three ties a day I am forced to be still for 1.5 hours. I Read, doze or watch TV while I'm running the protocols. So, if anyone has read any good books lately let me know!

Sunday, March 25, 2012

Home Swwet Home

Yeah to being home! Although yesterday wasn't much of a day of rest. We had too many errands to run after me being gone for a week. Today is Church and more errands. At least I was in bed early last night and got to catch up on some sleep.

Learning how to manage my time with running programs three times a day. Set the alarm for 6 this morning so I could get one program in before 8 am mass. Will run another when I get home and before I go to Vestry. Then we have errands to run. So it will be evening before I can catch up.

My knee feels great. Minimal if any pain there at all. My back pain is there, but much more tolerable than without the machine. My balance is better as well. I'm seeing huge strides as week one comes to a close. Can't wait to see how I'll feel at the end of next week!

Saturday, March 24, 2012

Travel Day

Yesterday was my travel day home. So, no time to blog. Left the hotel at 7 am Texas time and didn't get home till 3 am Texas time. LONG flippin day. Only programs I ran all day we're the ones at the clinic in the morning. Needless to say by the time I got home not only was I totally exhausted, but hurting as well.

Ran programs as soon as I woke up this morning which helped take the edge off the knee. Going to work on the back this afternoon. I''m so glad to be home! I'm very tired today so I don't have any plans to do anything but rest.

Will keep everyone posted on how the tretments go now that I'm home!

Thursday, March 22, 2012

Treatment explanation

OK...I'm going try to  explain what the treatment is I'm getting in short, sweet terms.
The VT-200, or Vecttor system, delivers electrical stimulation, through electrodes, on accupressure points on my hands, feet, arms and legs to provide symptomatic relief of chronic pain.The machine determines the right stimulation intensity by automatically measuring my body temp through two specially designed Thermistors that are on my fingers during testing. The Thermistor monitor my skin temp. The VT-200 delivers four channels of current through the two treatment leads and 8 electrodes that are on my hands/feet, arms/legs according to whatever treatment protocol I'm running. They do not stimulate muscles. They stimulate nerves. It is completely painless. In fact I don't feel ANYTHING during my treatments. I doze, read or chat.

Day 4 of Treatment

Day four over and done. I feel pretty darn good. Doc added two more protocols to my treatments. Means I'll be running the machine three times a day instead of just two. Fine with me. It's working and I feel SO much better. He evan gave me a protocol to run next week after I see the dentist! WOW!

I've asked Doc to give me a written explanation of exactly how the machine works so I can post it on here. All I know is it's working and I feel like a different person.

Tomorrow we'll be re-doing some of the testing we did Monday so we have actual numbers to measure my improvement. I'm especially interested in the Vibration Perception Threshold (VPT). (This test indicates whether or not the large sensory nerve endings in the feet are functioning within normal limits. Elevated VPT numbers indicate dysfunction of these nerve endings which will cause problems with balance, coordination, and walking. The VPT numbers are always out of whack with MS patients). My number we're seriously messed up. Will be interesting to see if the VPT test shows what I think it will. My balance is starting to improve!

I'll keep you all posted!

Wednesday, March 21, 2012

Treatment day 3

I feel better today. Everyday I see an improvement. The neuropathy pain in my leg is now down to a level 3/10 pain. That's INCREDIBLE. It's there but now it's more of an annoyance than something that affects the way I walk. I actually woke up this morning LAYING on that leg. Usually when I roll over on it in my sleep the pain wakes me up and I have to get off it. My back is better as well. Still have pain there, but it's better.

The sleep program I ran last night before turning in was pretty effective as well. I was out by 9 and didn't wake up until 4. For me that's amazing.  got 7 hours of solid sleep! That NEVER happens.

Today we concentrated on my Right knee and my MS. I still find my body forgetting where my feet are but I don't think it's as bad as it was on Sunday.
All in all a big improvement in several areas after three treatments. The best part is I get to take the new machine home with me so the treatments will continue.

Tuesday, March 20, 2012

Treatments going well

I didn't blog yesterday because I just wasn't feeling up to it. The treatments kinda took the wind out of my sails and my blood sugar got to be a bit on the low side. I'm feeling better today and after talking a length with the Doc I added more protein into my diet in order to help keep my blood sugar up. He also wants me to add a little Rocky Road Ice Cream to my diet EVERY evening. My kinda Doc!

I wish you all could come to Texas with me for this treatment. It's non-invasive...absolutely painless and it works!  In very basic laymen terms you simply hook yourself up to a machine with electrodes and temp. monitoring gadgets and read or watch TV for 80 minutes. Piece of cake. Of course due to the changes it makes in your body it tends to make me feel "off" for a few days, then I feel absolutely wonderful. Already I'm sleeping better and I didn't have any leg cramps last night! My back pain is down from a level 7/10 to a 5 today as well! For me that's simply awesome!

So, day two down.....several more to go before I return to home sweet home and hubby.

Sunday, March 18, 2012

Travel Day...and leg cramps.

I made the right decision by coming down to Bakersfield last night. Hubby say we got lots of snow and as it rained Not good for driving.

My evening was uneventful and the night quiet. Until 4 am when I was awakened by the worst leg cramps. PERFECT. I hadn't had leg cramps in months and as I'm on Neuontin I was hoping I wouldn't have them anymore. WRONG. Damn, they hurt, and on a travel day no less. Walking can be awkward at the best of times let alone when your legs hurt and the muscles are fatigued from cramping.

Gonna be a long day today. Other than the muscles aching in my legs I actually feel pretty good today. My energy level is good and my mental attitude is positive. I'm really looking forward to my treatments in Texas, although I will miss my hubby!

Saturday, March 17, 2012

MS is "Lucky"??

I'm sitting alone in a hotel room. Big snow predicted for home and I couldn't risk being snowed in and missing my flight tomorrow morning. One thing that I absolutely refuse to lose to MS is my independence. I may walk like I'm drunk at speech can often be confused and I may have to use braces and a cane to get around, but I do everything that I can independently. I have a great husband. He knows when to help and when to step back and let me try.

I know he wasn't exactly thrilled to let me go to Texas to see Doc by myself. Especially since I am recovering from an exacerbation and he knows any stress can throw me back into another one. (Everyone knows how stressful just getting through airport security is). However, he also knows how important it is to me that I am as independent as I can possibly be.

I'm very lucky so far with my MS. I'm still mobile, and if one overlooks the leg brace and cane no one would think I have MS. Those of you who know me and my MS history might think I'm out of my mind to say I've been "Lucky". "They" think it was the MS that took my hearing leaving me 100% deaf. Who can call that lucky? I spent time in the hospital, rehab and in a chair three years ago due to the worst exacerbation I've ever had.  I typically go through and exacerbation ever 4-6 months requiring IV steroids. That's "Lucky"?? Who would call that 'Lucky".

I would. You see I have a powerful force on my side. God. Without my faith and the strength God gives me there is no way I would have been able to overcome the obstacles MS has thrown in my path. Through the struggles I've had with MS there have been lessons learned and blessings received. I've met wonderful people BECAUSE of my MS. I've had opportunities and doors opened BECAUSE of my MS. So, while yes, it's true, having MS sucks, I choose to focus on the blessings I've received as a direct result of having MS. Don't get me wrong. There are days when I get frustrated because I can't grasp things, or talk right...or hear or walk without stumbling.  However, I believe it's how you handle those challenges that tells the world who you really are, what your really made of. For me, those challenges also bring me closer to God. Those challenges are a reminder of how much I need Him in my life for strength. I can't "do" MS alone. Even with a husband who is behind me 200% and family and friends with unwavering love and support it's the strength God gives me that keeps me going. So yes, I would say I've been "Lucky" with my MS.


Finally...a decent night sleep. Not a perfect one, but at least I was able to sleep for a few hours at a time. My Doc increased my Neurontin dose yesterday to 600mg TID. We had to do something for the neuropathy I was having in my left leg. It was so bad I couldn't stand anything to touch it, let alone roll over on it at night. As much as the Neurontin helps I don't like the fog" I find myself in until my body adjusts to the increased dose.

Ahh the joys of MS. Just coming off an exacerbation I'm hyper-aware of everything. Working to keep my stress level under control and doing everything I can so my body heals. I still have some additional weakness on the left that wasn't there prior to this last exacerbation, but I also know it will be weeks before things have the chance to heal and come back. One step at a time!

Friday, March 16, 2012

Another Leg of the Journey

Ahhhh...the wonderful world of MS. Just experienced another exacerbation and went through a round of 5 doses of IV steroids. Not fun to say the least. I've come out the other side...a bit weaker but without any serious residual neuro effects. It's a no brainer as to what caused this exacerbation. Stress...pure and simple. In the midst of a bathroom renovation that had more problems than not.

I head to Texas on SUnday for medical treatment for my MS and my back. Getting a new machine (New generation) and am looking forward to seeing what kind of difference these treatments make this time around.

Sunday, February 05, 2012

Been awhile

Wow. Can't believe how long it's been since my last post. Life has a way of speeding up and moving at warp speed. Things have been going pretty well. My MS has been under control. With the exception of a few bumps in the road (usually during times of stress) things have been pretty steady. Yes, I have to watch how I walk and I certainly have to watch my stress level, but things are GOOD! It's been a few months since my last round of IV steroids and I've lost 26 pounds. WOOT!