BEING HOME IS GRADUALLY GETTING BETTER.

I am gradually getting better, now having picked up the ability to move from bed to bedside commode to wheel chair using a slider board.

Since my bedroom is going to be remodeled with new flooring and new doorways, I am temporarily using a hospital bed in the living room.  The hospital bed is most uncomfortable, in which I get stuck and unable to move, especially my legs were are like a ton of weight!

The home health nurse is still dressing my left cellulitis leg every other day.  Physical therapists and occupational therapists are now coming out two to three times a week.

At least I can move around my house and get into the kitchen and computer study with my wheel chair.  There is still talk of of a powered wheelchair.

Biggest job at the moment is removing clutter, which has always been one of my handicaps, but now is a necessary challenge

HOME AGAIN ... . . but with mixed blessings

I came home from Silver Stream Rehab on Saturday, October 19, 2014.  At first, all seemed to go well.  Transferred into and out of the SUV with the wheelchair and used the wheelchair ramp for the first time.  Then on Sunday morning, I fell trying to make it to my wheelchair from my bed; had to call 911 for them to get me off the floor and into the wheelchair.

Since then, my leg muscles have gotten weaker and weaker, now to the point that any transfers are impossible.  As a result, all my time is spent bedridden.  The home health agency has completely dropped the ball providing me with NO physical and occupational therapy during the past two weeks.  Nurses have come out every other day to change my left leg cellulitis bandages.  The home health agency has decided to "drop" me because they feel that I am "unsafe" in my own home.  I am appealing that decision.

In the meantime, I am asking my primary care physician about sending me to Duke or Chapel Hill for  intensive muscular dystrophy clinic  intervention.

Each morning from 10 to 12 am, I have CNAs come to my house at my expense, to help with toiletry, bathing and dressing, as well as minor chores such as doing laundry.

I am stuck between the proverbial "rock and a hard place."  Suggestions, anyone???

A Bit of a Setback this week . . .

With a return of the infection, I have been back at NHRMC for a week now.  Today, they inserted a PICC line for the continuing IV antibiotics.  So I should be returning to Silver Stream Rehab tomorrow.

Where I have been . . . .

in a word -- the hospital.  New Hanover Regional Medical Center [NHRMC].

21 March: to the ER for the cellulitis in my left leg, but was not admitted.

25 March -> 2 April: Cellulitis.  Irregular ventricular heart rhythm noted. 8 days.

14 May -> 30 May: Admitted with a heart rate of 171 bpm and had to be shocked [cardiac conversion].  Then had pacemaker/defibrillator implanted in my left chest wall.  16 days.

3 June -> 20 June: Severe infection in left leg with sepsis - staph. Admitted to CCU.  Became delirious for several days.  First PICC line had to be pulled due to blood stream infection.  IV antibiotics given via second PICC line for 14 days.  17 days.

Total NHRMC days so far this year = 41 days.

20 June -> present:  Silver Stream Rehab

When I was admitted to the hospital on June 3, I was ambulatory with my walker and able to get around inside my house using my chairs which are elevated.  Now with the help of two therapists, I can stand from my bed when it is elevated to a very high position.  Still cannot take any steps.  Very discouraged! Lost a lot of strength while in the hospital and my limb girdle muscular dystrophy seems to be taking over.

Limb Girdle Muscular Dystrophy

For the past 15 years or so, I have been suffering with limb girdle muscular dystrophy (LGMD) which has slowing become worse.  It is a genetic disease that runs in my Moore family tree primarily involving those muscles at the junction of my limbs and trunk, such as my low back muscles, hips, upper legs, and shoulders.

Fortunately, it did not start until after age 50 and has been slowly progressive.  Ambulation is now becoming more of a problem, and I have begun relying on a walker for balance and using my arm strength.  My walking distance is also limited by my shortness of breath, a holdover from my pulmonary emboli.

Driving is still possible however, because my lower legs and arms are still strong, so I can steer, accelerate, and brake without difficulty.  My Mitsubishi Endeavor SUV is a big help because it has a high center of gravity, and the seats are at the perfect level that are even with my backside for sitting down and getting out of the vehicle.

The longest ongoing problem has been arising from chairs and sofas, which are usually too low for my weak muscles.  Fortunately my bed happens to be very high above the floor, so it is not a challenge.  My favorite leather arm chair in the living room is a Bob Timberlake "Gentleman's Chair" which I have elevated on four inch blocks (bed risers/lifters).  For cooking, I have an armless drafting chair in the kitchen which is on casters, so that I can scoot around from the refrigerator to the counters and stove easily.  It has a hydrolic lift post that elevates it nicely.

For the past 10 years, I have been using an "Old Dollar" leather office chair in my small office at the back of my house.  It is so old that the hydrolic post would not go high enough and I kept adding cushions to the seat for height.  Though, it has been so comfortable and still looks good, it just had to be replaced with a new office chair that is more practical.

I have been shopping at Big & Tall Clothing stores for years, so imagine my surprise when Office Depot advertised a "Big and Tall" leather office chair.  I went into the store for a test drive, and discovered its hydrolic post rises to a very good height, and the seat is wider and deeper than most other office chairs.  It is even rated for 500 pounds!  It was on sale for $150 off the list price at $250, plus I could spend an extra $8 dollars to have them assemble it.  I hate assembling anything, and the reviews said it took two people and was very difficult to assemble because the pieces were so heavy.  So now, I am comfortable at my computers again.

Big & Tall Office Chair!
(Carpet is beige -- don't know where the green came from.)

For more information on LGMD, click on this link:
http://mda.org/disease/limb-girdle-muscular-dystrophy