Stone Soup

My homecare nurse walked in this morning and first thing she said was in surprise, "this is supposed to be helping you." I was very unsteady on my feet and my vision was worse. She warned me not to drive today...she didn't need to! I slept for hours after being hooked up to the new bag and woke up feeling even worse. I had only a little center vision and could barely stand. Slept most of the afternoon. I couldn't go to the bbq but Craig came over for a while. I liked the shirt he was wearing.

The brain fog began to clear about 6:00 PM but my vision is still not good. I have a little more energy right now. I cannot go to work like this on Monday. two more IVs to go and then I start the pills and the dose will diminish every day. This treatment is going to help me.

Thanks for all your encouragement and kind wishes.

Posted via email from How Heather Sees it

But it will get better, they promise me.

Homecare nurse arrived before 8:00 AM, I went out to meet her in the parking
lot because it is a little difficult to find this place first time. She set
the pump up and gave me instructions and her telephone number in case
anything went wrong. Driving to the office the alarm began to beep and I
went in with the alarm sounding. Called her and she talked me through
resetting it. Air bubbles had collected and had to be cleared. I was
afraid of the pump. Two more calls to the Nurse and 4 hours later, I am no
longer afraid of the pump.

Side effects began to be apparent right away. I lost vision during the day
in the upper regions of my eyes. I was less steady on my feet and knew I
would be unable to drive home. Called my son who said he would be there to
drive me home at 3:30. I got outside at the appointed time and waited
twenty minutes, hanging onto a post but he didn't show up. I went back
inside to call him and he was standing in line at the bank. I fell apart.
I was so exhausted.

Lynda, a friend in the office, came over towards my desk and I was crying.
I shooed her away, sympathy at that time would have made me totally loose
it. I apologized to her later. She understood and was very
encouraging...more tears. Tears just keep coming. Depression is apparently
one of the side effects of this medication and perhaps the reason for the
tears. I have lost 14 lbs on a diet recently. The saline solution used the
past two days has made me regain 4 lbs. Discouraging. I have to see this
through because it will help.

Many people have offered encouragement in the comments at my last post and I
thank each one of you for the emotional support. I am just too tired to
respond right now but I will...it is going to get better here.

Tomorrow I am going to a family bbq at my daughter-in-law's parents
home--after the third iv has finished. I hope to enjoy the day and I look
forward to it very much.

Posted via email from How Heather Sees it

I am still waiting for the second MRI but had to call her last week to let her know I didn't think I could wait to see her at end of June...symptoms were worsening. I feel like I am walking on a boat in rough water most of the time, my vision is giving me trouble and my brain feels like it is in a thick fog.

Sitting in her office this time, she told me the blood tests had ruled out Lupus and another thing. It appears to be MS. Since the symptoms began to worsen, I remembered feeling like this once before, 27 years ago when my son was beginning grade one. Brain fog and staggering gait...I thought the rose dust I had been using did it to me and went with the bottle to my doctor. He sent me up to the hospital and they kept me in.

I was crying because I was missing Craig's first day of grade one...they picked up on that and thought it was the problem...hysterical mom loosing her son. I insisted I wasn't like that but they sent in counselors. So frustrating.

One night, still in a corner of a room in emergency, I heard a woman in a bed telling a doctor her symptoms and they were like mine. They had already diagnosed her with MS. I can't remember how long I was in hospital, it was under two weeks and they took CAT scan, other tests, found nothing. On the day they sent me home they took a spinal tap and did not tell me to lie down for the rest of the day resulting in an agonizing headache that lasted days. They sent me home instead, telling me to eat more, gain weight and relax. Two weeks later I was back for a check up and they told me it wasn't MS. Gain weight, relax.

Over many weeks the symptoms lessened and over the years I forgot about them, mostly. The episode did bring about a spiritual rebirth, I became a Christian, which is another story that I won't tell here.

I thought of all this again over the past few weeks as my symptoms have been worsening and mentioned it to my neurologist this week. She said it was likely my first MS flare up, she took the details and will contact the hospital in Montreal. Even after 27 years, the records will be available.

She told me how they halt a flare-up now, large dose steroids, which I began today. They did the first iv in the hospital this morning and then I went to work. The remaining treatments will be done by a homecare nurse for the next 5 mornings before I go to work... next week I will take prednisone in large doses that gradually diminish. This will stop the flare-up and lessen the damage remaining.

She wants to talk about long term MS drugs when I go back in a few weeks. I want to talk about recent developments in MS research. An Italian doctor, researching MS because his wife had it, discovered angioplasty opens blocked veins that trap iron deposits in the brain which cause the MS lesions. With everyone they perform this procedure on, their symptoms disappear. I want to be part of a clinical study.

The Baxter box arrived tonight, packed with IV pump, and medicine. Homecare nurse will arrive between 7:00 and 9:00 AM then I will go to work and keep my wrist covered. I have seen them terminate many people because they were sick--didn't want to be saddled with the insurance costs or long term disability. Nothing personal, it's just business.

Posted via email from How Heather Sees it