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.