Wednesday, November 25, 2015

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.

Thursday, November 5, 2015

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.




Wednesday, November 4, 2015

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.



Monday, November 2, 2015

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.