Thursday, January 18, 2018

"This"


It's winter here. Sometimes this season, being the best for me as far as temperatures go, can be the most challenging as far as mobility goes. Snow and ice are not kind friends. Knowing this and preparing for this has been my theme since the cold winds started and the disappearing of  the leaves occurred.
Earlier in this season I purchased some boots with good tread. I was thinking of keeping my toes warmer this winter. My Converse are seldom up to the task. I also had been saving Parmesan cheese containers. Not to keep my feet warmer of course, but, to keep them under me.  What does that have to do with the snow and ice? Well, They make wonderful containers for rock salt or some sort of di-icer. I would imagine even sand or cat litter could be used. Anyway, I try to have one container in each car I drive. It's handy to sprinkle some out onto the road or parking lot  before I step out of the car. I've even been known to sprinkle along my path clear to my destination as I walk. (even helps the back trip) On the same note: a small Mrs. Dash container serves well as a pocket container for the same usage.
I've also purchased some traction devices for my boots. They are slip-on. They work well on ice and in the snow. Providing me with a surer step. One precaution however, don't wear them into a building that has wood, tile, or linoleum flooring. These cleats seem to slide really well on these types of surfice. And "NO" I didn't learn this the hard way. Thankfully. Deductive reasoning came into play for that bit of wisdom. Oh, most likely imparted wisdom.
I've also purchased an ice claw for my cane. It's a nifty device that one attaches to a cane shaft. When flipped down it rides on the cane's tip to grip the ice and snow to aid the cane from slipping out from under it's user. When indoors one can flip this device up so it doesn't mar the floors or slip away on hard services. It's worderfully handy. A favorite aid to be sure. When it came in the mail I pondered (out loud) which cane I should put this on? My husband replied, with a "duh" in his voice "your clear one". Yes, I have a clear cane. I purchased it a couple of years ago and dubbed it my Icicle. It's perfect for winter and now it's equipped for winter too.
Even though I feel well equipped for this winter my limitations still dictate my activities. We still hold to a strict schedule (this started for G's sake but, has become lifestyle) and I must needs live according to my allotment of "Spoons".  I still find myself "kicking against the pricks" though instead of life goading me along, it holds me in place.
I am doing well, I think. I have been holding well with no visible progression of symptoms since my last neurology visit. I am doing well even though I am not currently on a DMM (disease modifying medication).  This life ISN'T what I planned it to be for sure but, I am doing well. This is how it is.
The days aren't without comforts and joys though some times they pass slowly and with difficulty. This is life.
One day, this passed week, we (my husband, myself, and our son G) were out for lunch with some other family members. It had been awhile since we've had lunch out with a group. It was very nice. Getting caught up on some family news. Trying out a different restaurant. Getting out of the house. All very nice.
During the visitation part of the outing, one of the attendees asked us "So what are you up to today?" We (my husband, myself) both answered at the same time, in the same upbeat way. "This." I don't know what the person thought about our response but, the look on her face had a questioning aspect to it. Or maybe I just thought it did cause I am sensitive about this.  I know I shouldn't be but, I am.
We live in a time when people are on the go. Always. Scheduling their days to fit in everything they need or want to do. It's the course of life in these times. Or maybe it has always been so. The busier one is the better it seems. Having full days is a blessing. Having things to do  and being able to accomplish the things needed is a blessing. Thank God for these blessings. I need to remember that. I need to remember this.  My row to hoe is in a different part of the garden. I'm still working at this. My process is slower. My progress is slower.
When we were leaving the restaurant, saying our good-byes. As I was walking back to our car I heard my Dad say "This was fun." In my heart I agreed with him.
"This" was fun.


Saturday, November 11, 2017

Changes

A few changes have happened in my life recently  and there are more on the way I am sure. Such is Life.

Some of us don't like change. I am in that camp. I have never liked change. O.k. so for  the past seven some years "Change" has been pretty much on the front burner. Though, basically,  all in one aspect of my life. That being my MS life.

I haven't had many bad flares or exacerbations, just a constant slow progression. Symptoms remain relatively the same as they have been since diagnosis. With the exception of the double vision that got me the diagnosis. Thankfully that hasn't revisited me. *T.Y.J.

I've had three DMM changes. That's changes to my Disease Modifying Medicine. The three that I've tried at the suggestion of my much trusted Neurologist ended up not working well for me. Though the only way you can know this is to do a MRI to see if any new lesions show in the images a MRI provides. The DMM's don't make one feel better. I fact some of their side effects can make you feel worse.

The first MRI I had was my diagnostic MRI. The base line imaging. It proved my double vision was all in my head. Haha. Just a little humor I like to say on occasion. It is in my head but, No, I mean.  The MRI proved my double vision was because of lesions in the optical region of my brain. As well as in some other places. At that time my first Neurologist, Dr. James L, suggested that I opt to be referred to another Neurologist that specialized in MS. I thanked him and agreed.

The new Neurologist was a fount of information and help. Much trusted. I called her my fire hose of information. She got me going on my first DMM. Copaxone. I was a couple years on that one before my next MRI. One may wonder why I would wait so long to do the next MRI. It wasn't because I fear them. On the contrary. I don't fear them at all. I rather like them. Solitude. Granted Loud! solitude. But, I just pretend it's a rock concert and rest.

Well, this second MRI showed some new lesions. Though I was tolerating the DMM o.k. my Neurologist thought that a different DMM might do better for me. So I agreed to change and she got me going with a new DMM. Rebif. A couple more years pass until my next MRI.
Why so long again? Well, I don't have insurance. I self pay for my office visits. My Neuro has been a great asset with providing me with information to get on the free drug programs available as well as MSAA's help with paying for my MRI's. Though at that time MSAA only would help every other year. No problem for me. Most grateful for their help.

Well you have probably guessed. This third MRI showed more new lesons. So change comes around again. My Neuro suggests a different DMM that has shown better success rates to slow the progress of  MS in clinical tests. So I agree and changed again. This time at least it is one that doesn't require me to shoot myself.  Which by the way became another joke I would use. I don't mind shots. No fear of needles. They've been a major part of Life here.

Onward. I started taking the new DMM . Tecfidera. It's tolerated by me pretty well. A couple of side effects but not unbearable. Hair loss. Weight gain. This DMM does require blood tests at least every 6 months though. Watching for a drop in blood cell counts. If they drop below a certain number my Neuro will pull me off this medicine.

So after two years guess what. My blood counts drop to an unsafe level.
My Neuro doesn't pull me off with hopes that they will rebound before the next blood draw. She suggests if I need to do a different DMM it should be one of the new infusion drugs. These are reported to be very effective at slowing the progression. I tell her, point blank, that infusion drugs are off the table. I won't do those.

Well, six month later my blood counts haven't rebounded. Even though this current DMM has halted my progression, according to the latest MRI, if I stay on it I will need to do blood draws every three months and I run the risk of getting a serious infection that would set off a major flare. One of these infections could involve a life threatening brain infection.

So, last year, was my fourth and latest MRI. It showed that the DMM I was on arrested my progression. It also show an anomaly in my lesions that I still haven't got to talk to my Neuro about.  That might need to be a different post to this blog. Maybe. Might couple that with a blog about my last non-appointment. I've had some changes. I am not as patient as I use to be.

O.k. enough history. In this post I've tried to give a base line explaination for the next change.
 After my last blood draw, and last appointment with my much trusted Neuro, more than one change was poised to take place. I found out, or rather, came to the conclusion that I would need to go off my current DMM or continue with it at a higher risk. I would need to have blood draws every three months to watch for lower blood counts and infection.
Oh, By the way, Point of note. Because of this DMM's side effect potential, my blood counts might never rebound completely.
Through a series of phone tag conversations my Neuro relayed her position of getting me off my current DMM and getting me started on an infusion drug as soon as possible.
She must have forgotten I don't want to do an infusion drug.
Among the phone tag conversations I discovered that my Neuro would also be going on sabbatical in December and was suggesting other Neurologists to her patients. Her office would gladly refer me to one. For my case Dr.L suggested Dr. P. She's not in our immediate area but, 30 some miles west.

Change number one.
So, after a few days of stunned shock, I decide to go off my current DMM. I am not staying on it to see if it drops my blood counts even farther. Dr. L,  during our phone tag conversations, relayed that this would need to happen in a timely fashion so the Tecfidera could leave my system before I started the infusion drug or an infection could happen. She must have forgotten I am not doing an infusion drug. Be that as it may. I went off my DMM and currently letting it get out of my system

Change number two.
I made arrangements to see Dr. P. She will hopefully fill my need for a new Neurologist. Dr. L's office gave me the referral I needed and Dr P's office has been very helpful getting me set up for a visit next week.

Change number three.
At this point in time it is my decision not to take another DMM. 
I was going to try and explain DMM's in this post better than I think I have before. Suffice it to say. DMM's are not cures. There is not a cure for MS. They do not make one feel better.  The name Disease Modifying Medicine explains what they are. They don't cure though they can slow or even arrest the progress of MS. The disease is still with you. The symptoms and the damage already done stay with you. They still have their effect on one's life.
Some or all of the side of effects of these DMM's are frightening. One needs to weight the costs.

So I am waiting for my new appointment with my new Neurologist. Waiting for any new changes coming my way. They are coming. They always do. As always. Prayerfully. Hopefully.

Trustingly in my Lord Jesus. He never changes.



"Jesus Christ the same yesterday, and to day, and for ever."  Hebrews 13:8 KJV




* that's "Thank You Jesus."