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Category Archives: Living with Multiple Sclerosis

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MS Update: I Went to the Liver Institute and All I Got from it was a Red Solo Cup

Quilt Therapy Posted on August 3, 2014 by TK HarrisonAugust 3, 2014

As I alluded to on Facebook last week, I had to see a liver specialist at the Liver Institute in San Antonio.  My liver enzymes have been elevated that past two times I’ve had labs drawn and the new MS therapy the MS neurologist wants me to go on affects the liver.  So, they need my enzymes to be in the normal range and not elevated.

MS

My GP (general practitioner) already had me go through a liver ultrasound, adding to my gazillion other diagnoses by showing that I had a fatty liver.

This hepatologist that I saw has plans for my liver – good, bad or indifferent.

First, he had the phlebotomist draw nine vials of blood.  Owie!  He said that he wanted to test for a number of things that involved the liver, including my emzyme levels.  These were not the be-all, end-all of his plan but he needed to make sure I didn’t have some other liver issue that was causing my elevated liver enzymes.

Next comes a liver biopsy, scheduled for August 11th.  THOSE results will then be considered as the be-all, end-all of my liver situation.

And then the MS neurologist will have to decide if it’s safe for me to take the new MS therapy or not.  It could be that my fatty liver is what is causing the elevated enzymes.  If that’s the case, I should be fine to take the drug.  Or it could be that there’s something wrong with my liver…which means I could not safely take this last-ditch effort at the MS therapy.

Thus far, it’s been quite a year – I have been on NO MS therapy since January.  Am wondering what (if any) damage has been done to my brain thus far, without a therapy.  I know that with the four failed MS therapies I have already been on, there continued to be lesions in my brain.  I also know, based on the last MRI, that the lesion that sent me to the hospital on Christmas day in 2010 has finished desalinating but the white spot it left behind (dead brain matter) continues to grow bigger.  And since it’s in my left cerebellum, I continue to have problems with the right side of my body…with dizziness…and with my balance.

I fell again over the weekend.  No warning.  Just fell.  And it woke three of my daughters up as it was late at night.  I am fine from the fall, only a little rug burn on one knee.  Balance issues are a big deal these days – I fall a lot.  No fun for me and it breaks my heart that my children have to see me and/or help me up when I fall.

MS

Guess we’re still in a wait-and-see position.  So, I shall wait and see what the liver results will be.  But, in the meantime – I do have this red solo cup to remind me of my visit to the Liver Institute!

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MS and Balance Issues

Quilt Therapy Posted on June 19, 2014 by TK HarrisonJune 19, 2014

First, please note that NO TWO people diagnosed with MS have the same symptoms.  Many folks with MS appear to walk like they’re drunk.  I usually don’t have that problem – at least around our house.  And when I am away from home and in public, I hold onto my husband or one of our kids to keep my balance.  Or a grocery cart.  Or a wall.  Whatever it takes.

MS

One thing that some MS’ers have is neuropathy in their feet.  I do suffer from this and it’s been a bit of a bother.  When I needed some podiatry work done a few months ago, the doctor tested my feet and told my husband that he was surprised I could even walk with the lack of feeling and the inability of my brain to tell my feet to do what he was asking of me.  Luckily, my knees still work so although I occasionally walk like I have club feet (or foot drop), it’s mainly because I have little or no feeling in my feet.  Case in point – I stubbed my little toe on a chair last night and except for feeling pressure, I felt no pain.

People with MS get lesions in their brains where the myelin sheath decides to go on a holiday and it kills whatever nerves it’s protecting in the brain.  The first lesion (even though I had two prior to that but I did not feel any symptoms with those) that sent me to the hospital on 12/25/2006 and the subsequent diagnosis on 12/26/2010 by the radiologist, happened in my left cerebellum.  Which is the control center for many things – including your right body functioning, your balance…and in my case, some serious dizziness.

Those of us with MS are definitely broken – hence my use of this great image:

MS

But just because I don’t walk like I’m drunk, it doesn’t mean I don’t have balance issues – and they’re happening more and more often the further I get into this autoimmune disease.  I fell in my office a couple of months ago while trying to sit in my chair.  Last week, I fell twice – once into a prickly pear cactus (OUCH!) and once while just walking out to help put our chickens in their coop for the night (no damage, minor pain).

Then, I fell out of my office shed a few nights ago.  It took me a couple of tries to pick myself up after that ordeal.  Only minor grass rash and a bruised forehead above my hairline but the next morning, when trying to figure out why my right hand was itching so much, I realized I had also fell in a fire ant bed (OUCH again)!

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But also, because of that white spot in my cerebellum where the lesion killed off those brain cells, my right side isn’t ‘normal’.  It’s basically like a person who has had a minor stroke – I cannot use a cane, a walker or even propel myself in a wheelchair because the right side of my body doesn’t always do what I try to tell my brain to do.

But, this falling?  We are NOT happy about it – and I’m especially not happy with the way it’s increased lately.  But fortunately, I can still get in some quilt therapy as long as my right hand can cut my fabric with a rotary cutter!

Posted in Family History, Living with Multiple Sclerosis, Stupid Tammy Tricks | Leave a reply

Ready for my Longarm Quilter!

Quilt Therapy Posted on May 28, 2014 by TK HarrisonMay 25, 2014

I snapped this photo of the finished quilts that I have ready to send to my longarm quilter, Meloney!  I still have a few to make before sending these off…but am waiting on my mother-in-law as she has a quilt she wants to send to Meloney and then I’ll send this stack and any others I finish before my MIL is ready with her quilt.  I love to see these stacks of quilts, knowing that I have been able to accomplish so much despite my disability.  It may take me longer to get quilt projects done…but, this stack is proof that I have made some quilt therapy progress!

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Posted in Family Therapy, Living with Multiple Sclerosis, Quilt Therapy, Quilt-Spiration, Quilting by Mel | Leave a reply

MS Cooling Box

Quilt Therapy Posted on May 7, 2014 by TK HarrisonAugust 16, 2026

MS

My loving husband presented me with an early anniversary gift this past weekend:

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What is it, you say? It is a cooling box. Really! Most people who suffer from multiple sclerosis (MS) have an exacerbation of symptoms (some painful, some not painful but uncomfortable) in the heat. And we do live in Texas, so heat is always my enemy. And because of my severe skin allergies, I cannot wear a cooling vest because they do not make them out of 100% cotton, or any other natural fibers. And because of the children, we cannot turn the air conditioning down any lower than necessary.

So, hubby did a little research and used his ingenuity and came up with this fabulous cooling box! What you see in the photo above is a Styrofoam box that one of my medications used to come in—a PVC elbow and a fan that needs electricity to run—but the fan is barely noticeable as far as its noise level.

This is what is inside the cooling box:

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It is probably difficult to see what is inside the box but it’s a plastic container filled with ice! Yes, that is it. The fan blows through the ice and then the cool air flows out the PVC elbow. He also has a different piece of PVC that will make the cool air blow in any direction on me at a 90º angle. And because of its simplicity, I can take the fan anywhere I need to, as long as they’re is electricity to run the fan!

Oh yes—that hubster of mine—he loves me.

Posted in Family Therapy, Living with Multiple Sclerosis | Leave a reply

Quilt Studio Dream Design

Quilt Therapy Posted on March 31, 2014 by TK HarrisonMarch 31, 2014

My quilt studio still isn’t ready for action but I am impatiently anticipating and dreaming of the finished space.  All of the walls and ceiling will be white – I wanted a totally blank space so my fabric colors aren’t affected by any tinting in paint colors.  The floor tiles we chose are not quite white but pretty close.

So, time to put my mad designing skillz to the test.  I already have most of the furniture and appliances that will go into my studio, but it doesn’t hurt for a quilt girl to dream now does it?  Mind you, as a person with MS, I want everything on wheels (that lock and unlock) so that if I reach a point where I cannot walk very well, I can move items around to fit myself in a rolling desk chair or a wheelchair.

If I had unlimited funds, these are the items I would add to my studio to make it quiltastic:

Kangaroo & Joey Cabinet from Kangaroo Kabinets

Dingo Open Teak Cutting & Storage Cabinet

I would not use this as a cutting table as it’s too short for me.  However, it would make a great spot to put finished quilt blocks, waiting to be sewn together.

Tasmanian Height Adjustable Table

This is the table that would be used for cutting as it extends tall enough for my height.  Plus, the table top unlocks and rotates vertically for easier storage.  AND, by tossing a bit of batting over the top, this piece could also double as a design wall!

Impulse Reclina-Rocker® Recliner

Impulse Reclina-Rocker® Recliner

There is a little alcove with a window where my foster mother reserved as her special spot.  In that space, she needs a recliner, in case she wants to grab a quick nap.  The splash of color that this lounge chair would bring to the studio would be perfect!

Sandusky Heavy Duty NSF Certified Chrome 4-Shelf Wire Shelving - 86"H x 48"W x 24"D

Sandusky Heavy Duty NSF Certified Chrome 4-Shelf Wire Shelving – 86″H x 48″W x 24″D

I already have one of these shelf units and our plan is to purchase two more and then put casters on the legs.  The shelves would be placed side-by-side (by width) and with the casters, they can be moved back and forth for easy fabric access from either side.

Vero Floor Lamp

Vero Floor Lamp from OttLite

We have already decided to go with task lighting and not overall lighting, and with a couple of these OttLite floor lamps, mobile pure lighting is the name of the game!

Although this doesn’t totally outfit my studio, it does give me a great perspective on what would and wouldn’t work in the space I have.  And there are many items I already have in my current sewing room that can be re-used…such as open plastic baskets for the shelves, thread spool holders, ironing board, etc.  I am perfectly happy with these things, no matter where they will be placed.

What about you?  How would you design your quilt studio dream?

Posted in Living with Multiple Sclerosis, Quilt Studio, Quilt-Spiration | Leave a reply

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