My life's all tore up...

...well, my house is anyway!

We got this place is September, knowing I'd have to use the power chair once the baby was born, or before, as the case turned out to be.  It's on slab, so one level, with some stairs to a big room up stairs.  Perfect... except the people before didn't need a chair, and the doors barely fit me through.  I'd put a picture of what the door frames looked like from me hitting them half the time from getting a bad angle into the rooms, but they're gone.

I found a place that assists to disabled/handicapped/whatever with making their home accessible.  They have contractors bid on the job that needs to be done, and, of course my husband has been doing this kind of work for pretty much all of his working career and knows that he can do the job better, and for less $ than any regular contractor since he wouldn't have the extra expense that comes with having employees.  SO, we enter into the lovely reality of 'the job will get done by their date, but in my time (weekends)', and our house gets disrupted for about 2 months.  But, when he's done, all the doors and the bathroom will be handicapped accessible.

Love having my house improved, but could do with out the process.  I should have gotten a picture of the hall covered with door pieces, tools and a shop vac.  Maybe when the new doors go in.  Right now, and probably for the rest of the week, we have no doors on the bed rooms or bathroom.  Thank God we have 2 bathrooms in this place and that we're able to make the other small bathroom work!

"Big Pharma Behaving Badly" and why I dislike the NMSS

Big Pharma Behaving Badly (And Making Me Want to Vomit)

Shared off Wheelchair Kamikaze.   Funny that my first neuro put me on Rebif right away, and that I reacted to it poorly and had more lesions. I don't trust any of them. Makes you wonder if CCSVI tests and treatment aren't covered under insurance b/c the insurance companies are paid off by the drug companies!  Now, I'm not a total conspiracy freak, but you have to wonder how much of this goes on when things like this break out.

Always and forever will hate the Nat'l MS Society's slogan 'MS stops people from moving.'!  And if my ms suddenly paralyzes me... I am blaming them for putting that idea into my head.  DEPRESSION is what CAN stop people from moving, and not work to combat their ms!!

I just shared my grandmother's story of being 'bed ridden, blind and incontinent', as my dad explains it,  back in the 60's.  She  (mainly her sister) found a regimen that helped her recover from her ms - before drugs that 'modified the disease', and I knew her as a grandma who, like many others, used a cane and sometimes a walker.  Recover, not get 'paralized' and die, RECOVER - before all the new 'disease modifying' treatments.  Her story can be found on scribd.com.

I, personally, can tell a major difference in my abilities from day to day, depending on what state of mind I'm in.  I just had a baby, and was pretty much confined to a chair during the last trimester and the first few months after he was born.  I started physical therapy and am already, 6 months later, back to where I was before the pregnancy, mobility wise... and am even getting to where I can move him around using a stroller and not only the chair - AND, I was discharged today and declared 'no longer home bound'.  MS CAN be combated if you learn and do what your body needs!  I know that when my job fired me for asking for accommodations to be able to stay healthy and productive working their BS schedule, depression nearly got the better of me.  Aside from telling patients they're 'doomed', the slogan feeds into the already negative misconceptions of MS that helped give reason for my job to dismiss me.  Though, I should add that I have thought of the possibility that the MS diagnosis was just a good reason for them to get rid of me, and that they didn't like having a free thinker who might challenge the status quo, or at least question it.

Having MS does NOT mean your body WILL stop moving, as the NMSS likes to claim.  I called and complained directly to the organization, and was told that 'MS stops people from moving.' just 'fits' with their 'Join the movement' campaign.  My PT who's been visiting me out here usually deals with the geriatric, rather than MS, but she has seen some MS patients over the years, and I went off on her today about the NMSS after she discharged me, while I printed Grandma's letter off for her, and she agrees that telling people their disease will immobilize them will only cause depression and most likely take away all reason to strive to improve. 

Off the NMSS home page:

The National MS Society is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.
We help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

• We are moving research forward by relentlessly pursuing prevention, treatment and cure.
• We are moving to reach out and respond to individuals, families and communities living with multiple sclerosis.
• We are moving politicians and legislation to champion the needs of people with MS through activism, advocacy and influence.
• We are moving to mobilize the millions of people who want to do something about MS now.

How the heck does the society 'make sure MS doesn't stop people from moving'?!  All I've seen from them, is that they educate.  Which they do do well, but I have to wonder also if what they put out isn't just support of the 'Big Pharma' companies' prerogative.  Back when I was first diagnosed, I knew of Grandma's recovery and was(am) on a yahoo group of people with MS (MSers) who are very anti conventional meds and swear by diet and supplements.  I called the NMSS, asking about if there was any specific research into any of this, and if there wasn't, if they would find someone and fund them in finding scientific evidence of legitimate nutritional treatments for MS.  I was practically laughed at and told it'd 'never happen, there's no money in that line of thinking.'

And THAT is why I get a little 'prickly' when the Nat'l MS Society is mentioned.

Being a Mom

I'm a little late with Mother's Day, but I've been thinking how great, and sometimes awful motherhood is.  I got a forward for mother's day, that I got reminded of this morning: located at the end of this post...

This morning, and for about the last week, my 6 month old grabs my figures and proceeds to chew on them.  Poor guy's going to be pushing teeth through any day now, but he's really been handling it well.  This is my attempt at sketching what I picture the photo of us going to Cody's room this morning would look like if there'd been someone else here to snap one.  I used to draw all the time back in school (B.C. - before children! LOL) and you can tell I was able to get up and snap a pic of the chair... Cody and I, not so hot coming out of my imagination.  What had happened was this, I was carrying Cody on my lap (like usual) and had the bottle in my hand.  Cody bent over (I didn't get that captured in my art... oops, lol) and was chewing on my knuckle as I drove us down to his room.

My girl, however, is showing that she just entered the 'Tween Zone'.  And a frustrating kind of Twilight Zone it can be!  Lat week, she spent at least a portion of everyday either yelling at me and/or freaking out over something.  I think we've found the solution though, we'd already been increasing her chores and help with the animals, hoping that would help discipline her, but what seems to be doing the trick is having an hour later bed time.  Go figure?!  It had been at 8 pm since she was younger, b/c she'd freak out in the morning, etc. if she got less sleep.  When we moved her bed time up to 9 this weekend, b/c she's now 10, with the stipulation that any 'flak' and it goes back to 8, she's been an absolute charm.  Oh dear, it just struck me that Cody will (most likely) be in the 'terrible two' phase right when Jayda starts menstruating!  God help us.

Before I was a Mom, 
I never tripped over toys
or forgot words to a lullaby.
I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.
Before I was a Mom, 
I had never been puked on.
Pooped on.
Chewed on.
Peed on.
I had complete control of my mind
and my thoughts.
I slept all night.
Before I was a Mom, 
I never held down a screaming child
so doctors could do tests.
Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at night
watching a baby sleep.
Before I was a Mom, 
I never held a sleeping baby just because
I didn't want to put her down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much. I never knew I would love being a Mom.
Before I was a Mom, 
I didn't know the feeling of
having my heart outside my body..
I didn't know how special it could feel
to feed a hungry baby.
I didn't know that bond
between a mother and her child.
I didn't know that something so small
could make me feel so important and happy.
Before I was a Mom, 
I had never gotten up in the middle of the night
every 10 minutes to make sure all was okay.
I had never known the warmth,
the joy,
the love,
the heartache,
the wonderment
or the satisfaction of being a Mom.
I didn't know I was capable of feeling so much,
before I was a Mom

The letter that was published in Prevention Magazine

This is the best way I have found to share my grandma's letter about her recovery from ms.  Now, mind you, 'recovery' does not mean cured.  In talking to my parents, she would have problems and 'relapse' anytime she deviated from what is laid out in these pages. A little bit like, say, recovery from alcoholism.  Certain steps must be kept up to prevent relapse.

 http://www.scribd.com/collections/3006149/My-grandmother-s-MS

I plan to try a lot of her nutritional regimen.   I have already enacted taking 2000 IUs of D3 a day, and Calcium/magnesium.  I've been taking cranberry tabs for several years now to help advert UTIs as well.  I have not started back in a multi vitamin yet, after getting off the prenatal vitamin after I stopped breast feeding - procrastinating going through what Grandma laid out and what the toxic levels are and ordering one.

Where ms comes from and how to get over it

I don't know the answer to either of those things, but I do have some leads.  MS drives me crazy, and the doctors, and the drugs.  MS, 'Multiple Sclerosis'... literally 'Many Scars'.  What the heck?!  The doctor and the drug companies figure they can treat my 'scars'?  Whatever.  What I have learned in life is that scars can't be healed, they are the healing of damage that has occurred, I can look at my arms and hands and see that -  these now small scars are what is left of a run in with a barb wire fence a couple years ago (look at the lower left hand corner and a still red mark in my hand in the lower right).

So,  why don't I hear about them finding out WHY ms patient's brains and spinal cords have scars?  Because they don't know why.  My grandmother's recovery from the throws of ms prompted me to write about this today.  At the end of this, I am going to attach a letter she had written about her experience with ms and how she recovered from it.  Recovered you say, got back what she'd lost anyway.  When I knew her I would have never guessed she had ms, she was just another old woman with a walker, and my grandmother.  Dad told me she was bedridden, blind and incontinent in the '60s.  I know you can recover from ms, because I feel that that is what I have been doing with my PT, and I need to do more of the diet stuff that she outlined in her letter.

They THINK it's an auto immune disease, so the current 'main stream' (doctor recommended) treatments suppress the immune system... I liked this site that came up when I googled my question for explaining ms: http://neurology.ucsf.edu/msc/faq.htm

I also like About.com:

Causes of Multiple Sclerosis:

No one knows what causes multiple sclerosis (MS). Four main theories have emerged to attempt to explain MS. Each of these theories can explain a piece of the MS puzzle, but none explain everything. It is likely that the cause of MS is a complicated interaction of these four theories: the immune system, the environment, infectious diseases and genetics.

Though no one knows why, most researchers agree that multiple sclerosis (MS) is caused by the immune system attacking the body. Specifically, the immune system’s T-cells attack cells in the brain and spinal cord, damaging the outer sheath (myelin) of nerves. The damage impacts how well those nerves function – the source of MS symptoms and disability. The disease-modifying treatments work by using different mechanisms to prevent the body’s immune system from attacking the nervous system. 
Okay, how do they know it's the immune system attacking the nerves...?

Environmental:

People in certain regions and areas have a higher risk for MS than others. By studying people who move from one area to another, researchers have learned that individual risk changes based on location. They have concluded that some exposure in the environment increases the risk for MS.
MS occurs more in places farther from the equator. Some researchers to believe that vitamin D may be involved in MS. Vitamin D is produced by the body when the skin is exposed to sunlight. In regions far from the equator, the atmosphere filters out more of the sun’s rays which decreases vitamin D production in the body. 
Sure, I was born in SD and spent most of my life there and in MN...

Infection:

Viruses are known to cause damage similar to that seen in MS. Some researchers believe that infections may somehow trigger the immune system to attack nerve cells. Basically, the virus (or bacteria) that causes an initial infection “looks” like a nerve cell. The immune system develops T-cells to fight off the virus. Those T-cells remain in your body after the infection is gone and become confused when they “see” a nerve cell, mistaking it for an invader. The result is that your immune system attacks your nervous system. 
Possibly...

Genetic:

A person’s chances of developing MS increase if he or she has a relative with MS. Researchers believe that certain genetic combinations increase the likelihood of a person to develop MS. However the increase in risk is not high enough to call MS a “genetic disease.” Instead, it seems that genes are one factor, among many, that determine a person’s risk for MS. Your chances of developing MS are:

• 1 in 1000 if you have no relatives with MS
• 1 in 100 if you have a second-degree relative (grandparent, aunt, uncle, etc.) with MS
• 1 in 40 if you have a parent or sibling with MS
• 1 in 4 if your identical twin has MS 

Yep, my grandmother had ms.

Not found in a basic search is the veins and circulatory system being involved, or CCSVI.  CCVSI.org defines CCSVI as "“Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis."  A 2009 article in Nutrion & Life say that

Research is suggesting that blocked veins in the neck prevent blood from draining from the head triggering plaque formations that cause MS.

Multiple Sclerosis is a neurological, progressive disease where the insulating myelin sheaths that protect the brain and spinal cord are damaged, resulting in poor nerve conduction and messaging. Symptoms and disability vary significantly depending upon which parts of the brain and spinal cord are affected as well as the stage of the disease, but eventually sufferers develop cognitive as well as physical symptoms, including decreasing ability to walk, move and see. MS tends to strike young people more frequently than older, and women 2 to 3 times more frequently than men. MS has always been considered an auto-immune disease, where the body attacks itself, but why this happens has not been understood.
Well, Dr. Paolo Zamboni, a physician in Ferrara Italy, may have figured it out. His wife suffered from MS, and after treating her 4 years ago, she has not had another acute attack, and her MS symptoms are gone. Furthermore, he has treated a total of 118 MS patients since then, and 100% of them had dramatic improvements in their symptoms.
What Dr. Zamboni discovered was that all the MS patients that he examined via Doppler ultrasound had blockages in the veins in the neck that drain the brain or in the azygos vein in the thorax. When he looked at people that did not have MS, both healthy as well as those that suffered from neurological problems other than MS, none of them had vein blockages. When he used angioplasty to unblock the veins, right away after surgery his MS patients noticed differences in how they felt. Two years post surgery, 100% of those that did not have re-narrowing of the veins had no MS relapses. If there was a relapse, a re-narrowing of the veins was found. So it appears that narrowing veins are directly linked to the progression of the disease.
Veins are the pipes that return de-oxygenated blood to the lungs and heart. Veins are not pressurized by the heart pumping to keep them open like arteries are (arteries carry oxygenated blood to the brain and body), so veins will collapse with external pressure. If a major vein like the jugular vein in the neck is narrowed or closed and the blood cannot drain properly from the head, a back-flow problem can develop, where the venous blood is actually going the wrong way. So a situation develops where blood is being pumped into the head, but has trouble getting out, pressure builds in the veins inside the brain, forcing the blood into the gray matter, creating damage.
If venous drainage is poor, iron accumulates in the brain causing cells to die, inflammation, immune problems, and the plaque lesions known to be found in those with MS. Dr. Zamboni found in post mortem studies of MS patients that the plaque lesions in the brain all had a vein at its center. And interestingly enough, the plaque lesions developed on the opposite side to the normal flow direction, suggesting that the blood was actually flowing the wrong way.
It is hypothesised that the inability to drain blood causes inflammation, excess iron deposition in the brain causing free radicals which kill cells, damaging the blood-brain barrier, and causing plaque lesions possibly triggering the auto-immune response in MS. For this reason, if this hypothesis is correct, it is vital that MS patients get their veins screened and cleared as early as possible after their diagnosis, so that plaque damage can be minimized.
However, this is still a very new idea, and many physicians either have not heard about this theory, or are not yet convinced that poor brain drainage may be the trigger for MS, so patients that want this treatment are having difficulty finding physicians that will do it.

Full article: Are vein blockages the trigger for Multiple Sclerosis? | Trusted.MD Network http://trusted.md/blog/vreni_gurd/2009/12/06/are_vein_blockages_the_trigger_for_multiple_sclerosis#ixzz1LQBD4VTe
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Research they are doing, and have found a definite correlation, but the doctors, mine anyway, want definitive proof before they'll send people for the treatment - Liberation Treatment.  So, many people are going to the coast, namely CA and FL, to get tested and have the procedure, and paying out of pocket.  What I have seen on Face Book looks promising, but those are the ones who have done it and it has helped.  I've yet to see the statistics on how many the Liberation Treatment has relieved of their ms symptoms.

Stem cells have also been used,  but I do not know to what amount and sucess.  I'm definitely hearing less of them than I did a few years ago.

Now to grandma, and a test of my computer skills in trying to share the 10 pages that I scanned... I don't know how to easily link this, so I will just put the letter here... which I can't figure out either, so more learning to do on my part, and I will share my grandma's regimen for getting over ms at another time.

 

Another ride

Well, I got another ride in this weekend, my 8th since having Cody.  Coming 'back' this time after having a kid has been a lot harder, and slower than my first, 10 years ago.  I'd like to blame the ms, but I am coming to realize that the added time, and age, has a lot to do with it too.  I've been working as hard as I dare on my PT, which is hard when you don't know when your tank is going to be empty... like today, for example, doing some of my exercises AND organizing and going through clothes for my little man.  I'm definitely feeling it in my back!  But, I can tell it's helping and that I'm getting stronger.

Anyway, the ride.  It was a rather uneventful one and probably only an hour long, But I can say that the biggest moment came at the beginning when we were deciding if my instructor should go get my mounting block or not and I just stuck my foot in the stirrup.  Then she made sure it was secure and I got on w/out a push.  I just walked, working more on my horse's roundness and obedience, and letting my instructor figure out where I was, physically.  THEN, I got OFF the best I have since I started riding again!  Most dismounts have looked like 'controlled falling', as on friend who rode with me called it, or required someone pulling me off the horse.  This time, I grabbed the mane up fairly high on the neck and used that to lift myself up and out of the saddle so I could swing my leg over.  It worked!  And lowering myself to the ground went 'easy-peesy' as well.  I now know for certain that I can 'get back' what seemed to have been 'lost', and I plan to start working through riding exercises set up to strength and secure your seat.  I am grateful that if my job had to 'let me go', that they sent me through the instructor accreditation program first so that I was able to learn these exercises, designed for teaching beginner riding students.

This picture is not from Sunday, but is my first ride after Cody on January 10th.  Perhaps I'll remember to bring my camera more places now that I'm writing this. :-)