Sometimes it’s an uphill battle

“Struggling Uphill Man With Ball Showing Determination” by Stuart Miles

The link above is to the protocol I’ve been following for eight months. I haven’t written a post in quite a while. Yesterday I had a mini crash and realized the high dose of d that I have been taking is too high for me. This morning, I will lower it a bit.

The overview of health on the protocol is good. I have been able to get up and go through the hygiene routine, dressed and out the door, for four weeks. I probably haven’t done that in years. I did have one day at home when Nick was sick. Otherwise I’ve been looking like a normal person. I have made reference to our upcoming move here and there but didn’t want to jinx anything. Now, things are sufficiently in place and I’ll tell you what I know.

We have lived in FL for eleven years in a house I thought I would live in for the rest of my life. However, next month, we’re moving to The Waterford which is independent living with a health center and rehab, when needed. Some places call what we’re getting assisted living. Technically, if I need true assisted living – help with hygiene, etc. or a 24/7 aide, I will need to bring someone in and pay them for the time being. We had a meeting and that assisted living piece will be added in the near future. There are many good reasons for the move not the least of which is a healthy meal every day. Also, I cannot get long-term care insurance due to ms and The Waterford contracts to take care of me for the rest of my life. There are medical requirements to be eligible and since we are healthy enough and could pass them, we did. As Nick says – better a year too early than a year too late.

We’ve been busy with the big and small decisions that go into new construction. The apartment we will live in was occupied for more than five years so it was gutted and we had flooring, kitchen, baths, paint color decisions (this was NOT a real estate transaction – we own nothing which feels good sometimes and unsure at other times). We’ve been dining there for a month and every day we meet more pleasant and interesting people. Names? Well, that’s another story but we’re getting there. And everyone there understands. We had a leg up knowing many people from church who live there. It’s a friendly, happy place.

You’ll hear more about that as time goes on and I learn what living there really means. They do the ‘flat’ laundry. Basically, sheets and towels and clean your apartment once a week. There are many activities on site. There’s a couple of vans with scheduled outings and runs to things like churches, doctors, etc. They cater to the dietary restrictions of the protocol.

Here’s the latest update on how I have been feeling. The fatigue is still with me but many days I make it through without a nap. I have not yet started the exercise portion of the protocol. The Waterford has a fitness room and a part time trainer. I can’t wait to get on the treadmill which is my usual and comfortable way to walk a few miles. I can get off if I need some water or a bathroom. And, when I’m tired I don’t have to walk back.  When I was younger, I walked four miles every day on the treadmill. It would be great to get back to that routine.

The past few weeks, the chiropractor and I noticed my back was tight. There were twinges of sciatica and a dull pain down the gall bladder meridian (link below). Notice how the points include those that trigger the ms hug which I have not had and will do everything to avoid.

First I upped the Klonopin. That only lasted two days before I was sedated without any improvement. I cut back on that and upped the gabapentin which helped. However, I do not like to take more than I’m used to taking. It’s expensive (I have it compounded to eliminate the fillers which were giving me arthritis-like symptoms.) and I tend to put on weight which is a negative. I’ll be vigilant as to how the lower dose of d let’s my back relax. A year or so ago, I wrote a post on being my own clinical study and here I am. At this point, I don’t need the doctor to tell me what to do. My body tells me and I trust it.

My autonomic nervous system seems to be improved. My blood pressure which used to read 100/70 or sometimes 90/60 – when they could get a reading at all – is now normal. 130/80. And maybe I should cut back on the salt? My pulse, too, is findable these days. If you’ve followed my journey, you’ll know I had nurses in doctors offices who could get neither a BP or a pulse with me sitting there in front of them! Not at all dead.

This morning was a bit of a cold snap. I used to feel the change through the walls and I’d have restless, sweaty sleep. That doesn’t happen any more!! I think I’m sleeping more soundly and for longer periods of time. I am reminded in the middle of the night that I drink three liters of liquid per day. I’ve never slept through the night without getting up to go to the bathroom at least twice. I’m not too aware in the wee hours but I think I’ve had a few nights with just one time up. That is remarkable!

I’m not having trouble getting the liquid into me. I drink a lot of tea now. The warm water is easier to get down. At least half the time, the tea has caffeine with some non-caffeine ginger tea in the evenings. I haven’t noticed anything from that but maybe I’m just not keyed in to what those side effects might be.

A wart appeared on the inside of my forearm a few weeks ago. Last night, I had a boil on my posterior. Seems like my immune system is hyper and I’m going to lower the d to see if there is an improvement. Luckily, I have a good supply of my daughter’s frozen breast milk and used it last night on the boil. This morning, it’s not as hard or big or painful. Thanks, God! You give me the medicine I need and it doesn’t come from the pharmacy. Thanks, Karen. You’re the best mother. For your daughter – and your mother!

I’m taking it slow today. My nervous system was on high alert and needs some calming. I’m disappointed I can’t take as much d as I’d like. D is the sun vitamin/hormone and I pointed out to the doctor that I can’t take the noon day sun, either.  I might have to go lower yet and then toggle back and forth. Playing it by ear is my specialty.


This post was written by , posted on January 25, 2017 Wednesday at 9:47 am

Leave a Reply

Your email address will not be published. Required fields are marked *