Wahls

Wahls

You could probably say that I didn't try hard enough.

I was leaning into this diet.  I am not able to make food for myself, or even feed myself half of the time these days.  I am not able to use the NMES machine myself... my partner does this for me, but there is not much point in it for this MS body.  (The physical therapist who made this machine available to me told me just that in the beginning, but I was determined to try this).

It takes up valuable time.  I feel like it is valuable to move the muscles for a few minutes but .. I am already paraplegic practically, so it is probably not worth it).

I am still eating meat (chicken) though I would rather not.  I am taking "desiccated liver," my idea as a compromise… since my partner does not want to cook this, and like most Americans, (and vegetarians) I do *Not* want to eat organ meat.  It isn't going to happen. Eating the standard muscle meat that I, and most Americans, have grown up on, grosses me out to chew on, enough already.  Dr. Wahls does not recommend a vegetarian diet.  I just cannot stick to this diet.  I want *sugar* ... I want MorningStar bacon.

The protocol designed by Dr. Wahls worked for her.

Dr. Wahls was not confined to a wheelchair... not at all, and not for years (like I have been).  She was in *Very* good shape.  She did not get out of bed at 10am like I do (my partner has a bad back and cannot get me up early, and going through the range of motion exercises that he does with me in the morning before he gets me out of bed (I am very grateful for this!) takes long enough).  

She was able to make herself food.  

She had chemotherapy.

It feels like suicide to not go full force Wahs.  And maybe it is still possible to get 9 cups of veggies per day.  That will limit my information.

& Both 6

But I can't stop eating rice, thin crust pizza (light cheese) or give up sweets completely. I am progressing, losing function every single day.  If I weren't taking Aubagio, I'd be drinking chablis ...

LDN

LDN

Upon my asking, my neurologist prescribed me LDN last year.

It wasn't long before my spasticity grew much worse. And I have a baclofen pump...

Then, I learn that LDN stimulates the immune system.

My Walk-In Bathtub

First of all, a walk-in bathtub was a BIG mistake.  Because I cannot  WALK. DUH! A rol-l-in shower is the direction I should have taken.

Here you can see the drain knob.

It is roughly the same size as a baclofen pump.

You can see why for months I was hesitant to start the ball Rolling to put that inside my body.

But in the end,, it turns out that it does not stick out at all.  It is placed under the fat layer.

Here, I have a butterfly decal in the top right corner. This is to remind me to reach up and stretch my arm.

You can hardly see it, but I thave a bar of Zest sitting on top of some of the controls that I never use.  It fits perfectly.  Also there, is my crystal deodorant.  I have had that thing for a few years now… It works so well and makes the issue of deodorizing when you don't bathe every day so easy.

This is the product I use.  The plastic case has fallen away, so I wrapped up the Crystal with masking tape.  I then put a colorful sticker on that, so I would be able to see it easily.  It has lasted me three years so far!  I originally purchased this product because I learned the ingredients in regular deodorant as breast cancer causing.

Ana (pixies) Lullaby & Solumedrol Insomnia

Ana (pixies) & Solumedrol.

The beautiful song by the PIXIES was the only thing that would sooth me before bed.  It was the only lullaby that I tried, that I needed to try.

The last time I had a Solu-Medrol treatment, my doctor asked me if I wanted to try a once–a–month course.  I went ahead with this.

Taking doses of Solu-Medrol so close together was a big mistake. I had a very bad reaction to the second dose of Solu-Medrol, after I got home.  I would park myself into a corner, where I would sit and just stare into space for hours, for example. I had seen a horrid sick image in a stupid book of death scene photos from the 1940s… this image haunted me.  This, along with the insomnia caused by the Solu-Medrol… I began listening to this short song by the Pixies every night before bed.  To relax me before bed, and give me something to focus on while I waited for sleep to come., and sang this in my head.

Another thing, I discovered herbal calms.  These tablets are chewable, so I would keep a bottle under my pillow.  I am losing function in my hands and arms these days, so my husband gives me one as he is getting me into bed, every night now.  I love them!

How I decorate December 2015

I reuse old cards.

Also, this year I will be sending a Christmas card to the little girl who survived fire because her father laid on her and perished.  She is six, and lost her left foot and right hand.

"You can send a card to Safyre at this address: Safyre P.O. Box 6126. Schenectady, NY 12306. "

&

How we decorate...

Baclofen & Supra

I am 36 years old, and I am under weight. I am also lying down, baby faat is distributed the way that breasts fall under armpits when laying down.
The pump has changed my life in so many ways already. It's been a year since I started this journey, I was afraid to do it.  The MISINFORMATION or out-of-date Information that I read about it on the Internet. I was reading about the side effects, the POSSIBLE side effects, and I was looking at the message boards.  II realize that this procedure has come a long way in THE 20 years or so that it has existed. This was a breeze, a piece of cake. It does not stick it out at all. The photo I had seen on the Internet was of a pump on a baby, and I had thought that is probably what it was (a baby).  But I have also seen pictures of the pump by itself, uninstalled. So, I was afraid of how much it would stick out and afraid of it slipping out of the pocket in my body. The doctor told me that he is seen only one case of this, where a man who wore his belt too tight, the doctor also told me, I could always have it removed. I was not told that I would barely even see the pump. I was afraid of the weakness I would feel. And I definitely have a higher mountain to climb since I have either, but it gives me a true baseline to work from interns of the weaknesses in the body. But it is not that much different in terms of the great mountain that I must now climb.  Of course, I don't have to climb the mountain. But I want to. I want to try and be all I could be, like I am in the army. ((just kidding).  Iam very tired, and the 50 is a different issue for me. I wanted the pump so I could not only manage my spasticity, I wanted to come off of the pills. I can now write what I posted exercise bike, the "Ex N Flex passive exercise bike to my heart's content. So, the first day, I had wrote it for 40 minutes, 20 minutes each way (forwards & backwards).  As a result, I was very spastic the next day. And so, I have learned my lesson. BUt it was so nice to be able to (passive) bike again. It had been a few years.
Why the procedure, (and it is a procedure, not surgery, but an operation).  Why the procedure has been pushed back was because I was afraid until about November, of last year. I was ready to do it. I needed it very badly. I had pushed it to the limit. But the doctor was moving offices. BAD TIMING!   I was told this would push it back to JANUARY.  I did not make a lot of noise when they did not call in January. Or February. It was the end of March before I was called. I did not make a lot of noise because I was afraid still. And I figured if I become the nuisance and make a lot of noise they would push it back even further, because they hate me. So I patiently waited, As Beck would say, like an an ashtray for the butt. No, I was waiting patiently and I'll leave it at that.  The doctor had moved to the new place along with his nurse and scheduler. Since
the surgery, I mean OPERATION, I get the feeling that they are either feeling bad about pushing me out so far or that they might be araid that I'm going to try and bring a lawsuit upon them? I have been told twice about how disorganized they are since moving to the new surgery center. But, they have been so kind to me. When I had went in for the trial, the doctor said something to me about gratitude. This impressed me and made me feel and know that this doctor really cares about his patients, he cares about people. And I love him. As it turns out, I had a great surgeon.  I had a great doctor for my  SUPRA pubic operation also. Dr. Walker has done a wonderful job, and I think it does partly due to a procedure in the operation that he developed himself. Both operations have made my life so much better. I would recommend that anyone having spasticity as an issue, to get the pump while they can still walk, if they can.    It is wonderful! I don't need to worry about bladder leakage, though I do where a bladder protection pad, I can drink to my hearts content now !  All I have to worry about now, is that I drink enough. I drink quite a bit compared to when I have trained myself to drink to avoid bladder leakage.

Who would've thought that there is so much miss information on the Internet?
There is a lot of miss information out there about the pump. A lot of it is just out of date.

I was put on antibiotics after the procedure, for 10 days.  I have a competent doctor, so there is been no problems and it stick out after all… It is really barely noticeable. And I am underweight.

I can lay completely flat now. And for a long time.  And I write this, every post, using the voice recognition on the iPad 3, which I use extensively now: I can ZOOM IN to read some websites. Other websites have gone to the "mobile" version… I can't use those websites because I can't zoom in.
"AW,  SHUCKS!"
LOL

Get To Steppin'.

S

Get To Steppin'.

If you can still walk, WaLK!

This Is what I would say to my self in the past: get off your butt, get off the computer, and get on that elliptical machine, walk around the perimeter of the house, get outside… Walk to the end of the street and back, walk around the block… Walk to the nearest bus stop and take a rest then walk back home… Just walk.

 Run, if you can.

Dance.

Use it or Lose it.

I lost it, and now it's gone. Forever.

Not walking means stagnant blood.

Not walking means PAIN.  

Pain in your hip, pain on your rear, pain in your knees, and major pain in your feet.

 Being wheelchair bound means a few steps closer to being bedridden.

Being bedridden means Death is near.

MS is no joke.

My Walker (It looks just like this he… But with more stylish wheels!  And stickers all over. )

sits unused in the 

corner.  oh, the adventures we could've had!"

EDSS