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

Supra Spa

Supra spa.

 A bladder irrigation at home, done by my husband, sent a

stream of cool Sterile water through my urethra. It was very pleasant.

That area does not get much action these days, after the supra.

He will be performing my monthly catheter change at home this month.

Not either / or, but BOTH (&)

                                       

I see two Neuros, one each at the two major health groups in my city.  One, a woman and the other, a man. I saw the woman last week, and she suggested, or at least threw out the idea, that it would be safe that I double my vitamin D3 ntake....so, I am now taking 6000 IU d3, every day.… So:

• I have TRIPLED my vitamin D3, to 6000 IU daily.
• I've added high dose (200mg daily) biotin, 
• I am leaning into the Wahls protocol  (paleo diet, supplements, electrical stimulation)

I feel a big difference when I forget my vitamins.

A walk-in bathtub for those who cannot walk

A walk-in bathtub for those who cannot walk?

In the end, I love my walk-in tub.  Before getting this tub, I was exclusively bathing in a bathtub for a year or two already (no more shower, or shower chair).  my only regret now, is that it pains my husband very much to pick me up from my wheelchair and place me inside the tub.

The company had financing... And so, with the contract in front of me, I asked myself, "should I be doing this?"  Praying that I was making the correct decision, I signed the contract. When the confirmation phone call came in a few days later, I almost backed out.  Many times since then, I wished that I did back out.
Like many things these days, I depend on my caregiver (my partner) for many things.  This tub seats me high enough that he is able to wash my hair without bending down. Bending down is excruciating for him.  I really need to continue to try and washed my hair myself, so I don't lose that function as fast.

The alternate route I could have taken is, a roll-in shower.  But I have, for now anyway, put this idea behind me. I suppose it would have been the right thing to do to get a roll-in wheelchair with a shower wheelchair, but, only for as long as my arms still work.

My plan for the future is one of those inflatable baths that the bedridden can use, so I can wash my hair (or,  more likely, have it washed).

I am very grateful to have this walk-in tub, so I don't have to completely lose that feeling of being in a relaxing bath. That, and when the water is turned on and it is cold, It isn't hitting my whole body the way a shower would!  So grateful for that! (although, this kind of shock is supposedly good for circulation).

A curveball came when I had the supra procedure, which requires that you don't submerge in water, as in a bath or pool. So, only my legs & hands are in the water.
Another case of bad timing!  I would have not gotten a tub if I had the supra first. That would have saved me a whole lot of money… But in the end, I am happy that I made this decision, except the whole ordeal is painful for my husband.

A note about the manufacturer and tub itself.

The tub comes equipped with about 12 different light settings (but I don't know why anyone would use anything other than the turquoise light)!  Is reportedly made in the USA, and the lowest step threshold in the industry. My complaint nowadays is that the drain knob (which is about the size of the baclofen pump, and so I was transfixed & afraid looking at that thing before the operation!) is too far away, but I figure now, that is only because I cannot fill the tub up the whole way because of my supra.

No More Periods

Stop menstruation with the NovaSure procedure!

I had a heavy flow, was thinking ahead to a bedridden future, and was tired of--just had to
stop– – taking progesterone birth chontrol pills to stop my period (hey have a possible side effect of multiple sclerosist!)

This brings to mind an earlier idea of mine:
At the tender age of 15, my mother had me go on birth control pills. We know that something is happening with multiple sclerosis, where women are more likely to get it, and when they are pregnant, symptoms disappear until after the child is born.

So, perhaps using birth control pharmaceuticals had an effect on my body, as well as the usage of the progesterone pills in the year or two before my MS slipped into the progressive phase.

I am recommending here, for women who are done with or not considering having a child, to look into this procedure. It is fantastic!

The only drawback, for me, has been a pretty good amount of vaginal discharge after this procedure.

But I must say: since the operation, it is Discharge City!  But not to worry, I had several cloth menstrual pads left over in my possession.  From the days when I also used a menstrual cup called DivaCup.

I used the 7-fold.

There is a bit of a learning curve, of course.  But I found help online.  A menstrual cup will give you 8 hours of freedom!  You may forget that you are having your period.

Compare to a tampon, made with bleached Cotton or paper menstrual pads bought at the superstore.

A menstrual cup may seem big and scary, but remember: a baby's head is meant to pass through this opening!  One_tme use cups also exists, but I have not tried those.

Social Security Disability Insurance

Social Security Disability Insurance
I qualify for SSDI (disability) in United States under survivor child benefits…
My stepfather killed himself in the winter of 1991 when I was 12 years old.
As someone who qualifies for disability, I also automatically qualify for
Medicare. I have a Medicare advantage plan, and as low income, I qualify
 for Medicaid.
As someone with a baclofen pump, I do not qualify for most stem cell clinical trials.
I first learned of a clinical trial in Chicago from a nurse, while I was in the preparation room to place
the baclofen pump! Bad timing!
Everything I have, I consider a gift from my dearly departed stepfather.

Biotin for multiple sclerosis?

Like so many other things, from ThisIsMS.com
I learned about high dose Biotin (vitamin B7)
being used in clinical trials for secondary progressive
MS, and the idea of acquiring it for myself from
a compounding pharmacy  (the pharmaceutical
brand name is Cerenday, available in the UK).

So, I got myself a prescription for 100mg, 3x/day of biotin.

We contacted a compounding pharmacy in the
the biggest city in the state for the best price on this, $100.00.

Tapering up to the full dose, I am up to twice a day
and maybe by the end of the week I will go full force!

The high dose B vitamins that Dr. Wahls suggests as
instrumental in forming myelin her TED talk lecture:
B1, B6, B9 and B12, (already taking sublingual 5000 IU
every day) , are next on my hit list.

 I don't want to die.
But I don't want to live like this anymore.
A cripple.  An invalid.
I'm feeling very detached from society right now.
I do not think about suicide anymore.
I am powerless to do anything now,
and I'm fooling myself to think that I ever did have the power.
Should I post this?

I feel guilty because I have it so good.
I just need to ride this thing out, stoically.
It is difficult to be stoic when I feel so hopeless and scared.

It's just part of my psychology...I have been diagnosed with bipolar 2.
It's been an upgrade from straight up depression. But when I start cycling back down, I get like this.
I am in no psychological condition to be writing blog posts right now. It is low quality and I m.ight Erase this later but right now it feels like a valid post, to show you my dark side.

No way, Jose.

I just received a follow-up phone call from the company using stem cells taken from body fat in La Jolla, California.  I found out that mesenchymal cells are what they are using. I was told that the stem cells taken from body fat are 100x more potent than what you could get from bone marrow, and that bone marrow is the "old-school" and "prehistoric" way of getting stem cells.
I was told that a down payment of $2500 is required, and then that I would need a loan of some kind, so I could put down the full amount.  No financing.
I believed that I would be getting a phone call from a patient advocate, a former patient that had good results. But no, this was an employee with the company.  Emails have been sent to me along with the phone call, also.
I hope that everything I'm being told is true…

Now to start looking into other companies that provide this service. A few years ago, not long after we moved to Oregon, I was looking at a place in New Mexico and was excited at the thought of going to New Mexico… But then I came to believe that there was no way that these stem cells from body fat could help me. I was still walking with a walker at that point. I thought of the treatment as something to help cosmetically, like going to a spa or something… but now I really want to believe it. I want to believe that stem cells taken from bone marrow really is in an old way of doing it. I want to believe that the YouTube video I saw of a lady, several ladies, attesting to this wondrous procedure is true. I want to buy some time. I don't want to die young. I came to Oregon partly to see my nephew grow up. More than that, I want to grow old with my husband. I'm not done yet.

And Now...a television advertisement

There are so many advertisements on television these days in America from the drug companies during daytime TV. And today, I see for the first time… An ad for a multiple sclerosis treatment?  Well, there is a first time for everything, as they say. The ad proclaimed that Tecfidera is the number one prescribed medication for relapsing multiple sclerosis. And then, here come the possible side effects: one is PML. I am surprised at this and didn't know about this Side effect… also surprised that a drug with this possible side effect is reportedly the number one drug. I am grateful that this isn't a possible side effect of Aubagio... But also wonder: is Aubagio effective?  My last MRI shows stabilization snce starting Aubagio.  Also, I have slipped into secondary progressive MS.   I learned on the ThisIsMS.com forum that MRI only reads one part of the brain...the gray matter?  While disability occurs in the other matter (for this example, that would be the white matter)

I am also wondering if I should start a chemotherapy treatment, if I am to receive a stem cell treatment.

Supra.

I have a neurogenic bladder.
I've upgraded from intermittent catheter to a suprapubic catheter.
Now, I can (and must) drink and drink and drink and Never worry about where the restroom is.

First thing they did at the urologist was to send us into the bathroom so I could provide a urine sample. Then, an ultrasound of my bladder showed that I had incomplete emptying. So, I was sent home with A few samples of Vesicare. Next time, I was sent home with a intermittent catheter sample package from a company and a prescription for Vesicare.

I could not do the intermittent catheter myself .
I am lucky enough that my husband did this for me.
After a year or so, and having a bladder infection,
I reached out to the urology office and asked for an indwelling catheter.
After six months, an indwelling catheter becomes too painful to continue using, as it is changed once a month.
So, I upgraded to a supra pubic catheter.  Now, I can drink as much as I like, whenever I like and never need to go to the ladies'  room.
(As long as the tube to the bag stays clear).

Clinical Trials

I went to clinicaltrials.gov, and searched for "Stem cell multiple sclerosis".

I have picked out the ones that interested me, and have narrowed it down to ones that will except my level of disability and there are some

that do not except a metal implant (Baclofen pump).

For the latter, I wonder if I only could have access to somewhere where they could check my baclofen pump after an MRI.  If only I could come back home and have the MRI here, and mail the MRI films back to them overseas.

There is a stem cell clinical trial in beautiful La Jolla, California.  

Don't get me started on California Love.  I spent most of my life and grew up in the desert of Los Angeles county. But, I had to leave and came to Oregon to get the home care that I needed, and I knew that the water situation would go bad at some point in the future… I didn't think it would be so soon after I left.

But I digress.
A 3-day hotel stay with medical transport will be paid for.
A "go fund me" campaign was suggested.
In this procedure, the stem cells are taken from body fat.

And it would cost us thousands upon thousands of dollars.

I don't know how much good this procedure would do me, anyway.
Reportedly, an increase in energy, and relief from bladder problems have been experienced. I don't need these. I have also seen reports of repeated procedures. I feel that this is primarily a money making venture. I have also seen a online video of a woman who very excitedly and full of energy, explains how much stem cell has changed her life. I am not aware of what kind of stem cell therapy she received.
Cemotherapy before the procedure to wipe out the immune system is not provided by this clinic.

I don't know how I would fare with chemotherapy.

So, my next step is to learn more about these bone marrow stem cell operations overseas.

And! The Biotin is in the mail to me.  It will be here any day now.  I have read that it could take nine months to show any benefit, but I feel that the benefit will be, even though it may not be seen.

A Happy Update

We have not had to use the commode and the Hoyer Lift more than a few trial runs, because it only complicates things and it hurts my husband to bend down and use the lift, rather  then just picking me up from my wonderful wheelchair (more on that later) and putting me on the toilette.  That's right.  The toilette.

15 Years After

I have heard it said (by a doctor, a young resident at a research hospital) that Secondary Progressive MS is usually what happens with relapsing remitting MS after 15 years.

A few years ago, I had a wonderful, vivid dream wherein I was going to travel to an island nation  for burial when I passed in the year 2015.

One of those graphics where it shows a plane graphically flying from one destination to another with a series of dots behind it was the next step in the dream. My spirit felt very excited and happy about this. Next thing I remember, is being there in my earthen grave and feeling like the earth lovingly cradle my body.

We are 10 months into 2015 now, and I am still here. Though, it seems that I lose a little bit of function every single day almost. And in that way, I feel like I am dying. The dream was a premonition. It was what I knew all along, seeing myself decline rapidly.  Growing ever closer to that stage 10 on the EDSS.

I have BIOTIN  on its way to me in the mail, and am looking into clinical trials of stem cells in in MS, and progressive MS.  I ruled out a few trials because of The EDSS limit of 6.5 (Hi am 8).

 Hope is not lost.

THE INVISIBLE OBJECT: THE BACLOFEN PUMP

The invisible object: The baclofen pump.

My Baclofen pump.

Can't see it?

That's right. It'can not be seen.

What you see is the scar from the operation, and a bit of my. Supra catheter…

 But that is A story for another post.

The photos and scary stories that I read on the Internet kept me afraid for months before 

I decided to go forward with having a baclofen pump placed. With the spasticity the way it was, I had no other choice, than tp get one, really..  My only regret not having this operation sooner… Much sooner!  While I could still walk.

I had the pump placed in March 2015.  The modern age of 2015, where my doctor had already done  hundreds of these operations.

Refills of the pump a piece of cake. The nurse uses lidocaine to numb the area first, before refilling.

PS.… one thing that scared me for all those months was the idea that the pump was placed under the skin. In actuality, it is placed under the fat layer! this object will not pop out "pop out" like I was afraid might happen.

Thank you, Tysabri.

Tysabri.

All I got from Tysabri is this blue fleece throw blanket. 

 I received this in the mail after I signed up to take Tysabri.

But when I was there in the infusion room, I had forgotten to request that I lay down fully: 

I had something called  Vaso-vagal, where my blood pressure would drop and I would pass out (and have a little seizure even) upon any kind of needle play.

But it wasn't the needle I was afraid of this time. It was Tysabri and the possibility of PML.

It turned out that the IV was not yet connected to a bag of Tysabri, anyway. After that little episode, the nurse and a phone call to my neuro, it was decided to abort mission.

I wonder now, for the first time, if I had taken the drug… I might still be walking today.

In any case, I have this blue fleece throw blanket and I use it on a daily basis.

THE EXPANDED DISABILITY STATUS SCALE EDSS)

Kurtzke Expanded Disability Status Scale (EDSS)

I just found out my score on the expanded disability status scale.  I am looking at clinical trials for stem cell on clinicaltrials.gov... Some of these trials, you need to still be walking and rate at the highest, a 6.5 on the scale.

I am 8.0 for EDSS.

The plastic bucket and chain.

So, today a Hoyer lift is being delivered to my home.  It is getting more difficult for my husband, my caregiver, to transfer me because of his back. And so begins a new era of my life with progressive multiple sclerosis.
 A commode was delivered a few weeks ago:
the set will now be complete.
And so this will be my life now, going to the bathroom in a plastic bucket, all because the toilet is not accessible to the Hoyer lift.

For my first post, I will try not to delve into history, but only go forward.

I learned of a treatment for secondary progressive multiple sclerosis on the www.thisisms.com bulletin board.
The treatment is a high dose of vitamin B7, "MD1003", BIOTIN.  I am hoping that my neurologist will prescribe this to me.  It could take nine months before any effect is felt.

This same neurologist sort of reluctantly prescribed LDN to me upon my asking for it.  It wasn't long before I discontinued LDN because it was causing an increase iof spasticity and painful spasms. Then, I learn that LDN stimulates the immune system.

I will be asking for biotin, asking what he knows about stem cell transplants, and what he thinks about the 15 year rule. I have come across the idea that, RRMS goes into secondary progressive MS at 15 years, regardless of treatment.