Saturday, June 25, 2011

A Timely Word

Rejoice in the Lord always: and again I say, Rejoice.
Let your moderation be known unto all men. The Lord is at hand.
Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things. Philippians 4:4-8

During times of stress, sorrow, or unspoken cares, we can find in God's Word a timely word to help us find our footing. A Word to help us in a troubled time. A Word to ease our hearts.
I often find my way to my Bible and try to remember to hide some precious jewels of Scripture in my heart.
For the past few weeks this Scripture has been weaving it's way through my heart and mind. I thought that today I would post it. Praying that it may also be a timely Word to those who visit here. 

Wednesday, June 8, 2011

The Head Doctor

The other day I finally had my appointment with my neurologist. It had been postponed a month because he was called out of town. I had the choice of seeing one of his associates or waiting for his return. I waited.
It had been 7 months since my last visit.
This visit was easy. My doctor asked how I felt I was doing. I said fine but, added that I felt as though I have had a relapse. I explained my reasoning and then showed him my print outs of my symptoms for the passed 180 days.
He looked over the list. As he read through it he pointed to the most frequent ones and affirmed that these were very common ms symptoms. He continued to read the list some more and said the others aren't ms symptoms.  I wonder at this statement.
He then points to  the nausea and tells me it  definitely  isn't a symptom of ms. And says there may be something else going on. He notes that I am having heart burn as well and prescribes omephazole to help with that. He tells me that I will take one 20mg pill a day for a month to see if that will help to end it. We'll see what happens at the end of the course and go from there.
He then had me get up out of my chair and asked me to sit on the table. He did some strength tests and then checked for sign in my reflexes and eyes. Asking me about any reoccurrence of the double vision. I told him it hadn't returned since the first episode. He looked at my eyes and has me follow his pen. At my ability he says "good".
At the end of these tests he said he detected more weakness in my right hand than before. But, given the circumstances I am doing well.
He then took me out in the hall and had me walk down it and back. When we returned to the office he asked me to sit down again. I got back onto the table and he said no, the chair please. Oops, my bad.
Back in my chair, next to my hubby, he sat back at his desk and brought up my MRI images. He was showing us the different slices and the places of my demyelination. Pointing to the different areas he explains in general what they control.
Then he said according to these images I shouldn't be having any cognition trouble. He pauses. As if in thought.  He then mentions that I might be, if I were having brain shrinkage. Then he asked if I had insurance. I say no.  He asks if I would like to take another MRI and I say no, we can't afford that right now.
He tells me that his newest associate is a ms specialist. That I could get switched over to her on my next visit if I wanted.  He had mentioned her to me before at one of my other office visits. Now, I asked him what he thought would be best. Without any pressure in tone he said he thought it would be a good idea but, it was totally up to me. I told him I thought that would be fine. I am glad I did.
My current head doctor is great. I believe he is very competant but, he had told me early on that  he isn't the best choice for ms related issues. He had also said at one point they are very fortunate to have this new associate in their office. I look forward to meeting her.
The visit concluded and the doctor walks us out to the check out desk. He tells the aid to set up my next visit  with the ms specialist in 6 months. He scribbles some notes on his clipboard and hands it to the aid. I thank him as he disappears around the corner.
The aid sets up the appointment and prepares the bill for me to pay. She tells me an amount that is a pleasant surprize to me. It's half of what I expected. I don't question why. Reflecting on it now, I think I know.
Afterward, we run to the pharmacist to fill my presciption. I love my pharmacists. They also save me some expense.
So I've stated the omeprazole. The first day  had no effect. No change. The information says it could taken up to 4 days to start helping. The second day seems better. We'll have to wait and see.
Since the visit I have been trying to reason stuff out. I keep going over and over the visit. That's what I do. Trying to remember what was said that is useful. Trying to figure out what was said and how it was said. Reliving and figuring out the nuances. Gleaning.
After awhile I bounce what I think against my sounding board. My hubby. My voice of reason.
He remembers the visit as I do. He listened to my concerns. It's the brain shrinkage that has my attention. He knows my history and tells me, my cognition trouble could be something else.
The books I've read do say cognition trouble is apart of ms. None of those books mention brain shrinkage as the culprit.
So here is where I am. I have ms. There isn't anything I can do about that. I can just taken care of myself as best I can. The doctors can help me by treating my symptoms as best they can. I can, hopefully choose the best doctors to help me with that. I can, hopefully choose the best disease modifying medication to help me.
Right now I don't have and can't get the best information about my current condition. So, I can, just deal with what I know and wait to see what transpires.
Isn't that what we all do? No matter our status. We use the best information we can get concerning our current condition. And deal with what transpires.
I know I'll be doing some more research. I know I'll be trusting my Lord to guide my steps.

Research:  Since the doctor said nausea was not a ms symptom, I've hit the books on the dmm that I'm currently on. During the clinical trials they found incidences of nausea in 2% of the patients, more frequent with the dmm than with placebo.
O.k. if  it isn't something else, it must be that. I may not know for sure, but it's something. The nausea and heartburn have been the biggest trouble as of late.

Friday, June 3, 2011

Life Upside Down - Nine months in

Here we are, through our ninth month with ms. I must say not a lot has changed from last month. Which can be termed as good and bad. But, that is life. Some good. Some bad. Right?
We continue to roll through the Status Quo days. They are a bit different now. We have had what I called a relapse last month. We do have a slight softening of those symptoms. Though they do remain as part of my ms now.
I still have the normal dizziness and balance issues. They are so common now and show themselves at the same time that they have been listed in my Symptom Tracker software together as one symptom. That simplifies logging for me.
I still have cognition trouble which seems to flare mostly when I'm under stress. I try to not have stress in my life but, we all know that is not realistic. Even just a chat with someone can bring stress into your life. One or two misspoken words can load the stress pretty well.
The up side of some of my cognition trouble is the sheer comedy of it. Laughter is a great weight lifter.
The nausea has been the most unpleasant. It is still with me. Thankfully it doesn't stay solid nausea all day and night long. It comes and goes throughout. No rhyme or reason. Peppermint and the like are still most helpful.
I am still having weakness trouble. It's been the same for this past month. I am usually fine in the morning. Though some days it arrives early. Mostly now in both arms and hands. I still comes and goes.
The evening still arrives with the heaviness in my legs. I've realize that this is probably spasticity. Some evening they are heavier, tighter than others. Some times if I get up and stretch them or work them on the stair stepper that will relieve them some.
I've had some mystery symptoms show themselves. I was going to call them voodoo symptoms but, though that is what it seems like, I don't like connecting that term to me. So mystery symptoms won.  O.k. all symptoms connected with ms are mystery symptoms. But, I'm talking about the ones that aren't common, the ones that don't seem to make it on a list of common symptoms, those I call mystery symptoms. Actually they are just plain weird.
In previous months I was talking about hot spots.  I haven't had those quarter sized spots on the bottom of my feet for awhile. Thankfully. I have had  just my left foot tingly. Not like it has fallen asleep. Just tingly. And my lips have gone numb a few times with the same tingling. I've ended up biting my lips on these occasions so I try to be careful not to chew while this is happening.
The weirdest mystery symptom is visual. Out of the corner of my eye I think I see something. It differs in subject. Some times I think it's an animal. Some times I think it's a bug. Some times I'm not sure what it is, it just is.  But, when I look again it's gone. Other times I'll be looking for something and be totally missing it while looking right at it. For the most part I believe there is nothing wrong with my vision optically speaking. I believe I am just having difficulty registering what my eyes are seeing. I am learning not to react strongly to these things.
These mystery symptoms are rare, but they do happen. And they showed themselves last month and this month.
A couple of things happened this month that I am a little unhappy about. They are not ms symptoms related but they are ms related. They are my reactions to my symptoms. To be more pointed. They are my reactions to my relapse. A couple weeks before this relapse my son was fighting a bad cold. It really hung on a long time. I was mega doseing vitamin c to try and keep it from hitting me. I ended up with a light cold. Though I am not sure, I can never be sure with ms, I think that triggered my relapse.
This has set up a fear or a caring in me that I am struggling with. I am concerned with germs now. To the Monk stage. O.k. maybe not to the Monk stage. But, more than I have ever been. O.k. this is probably a good thing to some degree. But the trouble I am having is in the making my concerns and needs known to others. I am having a little trouble standing up for my self and at the same time not putting my needs over others.
I'm probably not saying this well. So I try to paint the picture.
Grandview  photo by JC-thanks
My son and I went for a drive with some of our family. We went to place some flowers on some loved ones' resting places. It was a wonderful drive and a great time. Everyone seemed to have a nice time.
After returning back to town, the driver of the vehicle wanted to stop and pick up her granddaughter before going to her house. My son and I where still in the vehicle because our car was at her house.  I remembered that her granddaughter was just recovering from a cold and had had an ear ache the day before. So I asked her to take us to our car first. She was very gracious and gladly took us to our car first. I was so sad that I had asked her to do that. It put her out of her way by several miles. But, I felt like I couldn't take the risk.
Again, a couple days later, my son and I were at worship. They had prepared a beautiful Communion service. It was set up a little different than what was usual. The wine was in a communal cup with which we would be dipping our bread into. I mentioned to my son that I may not partake in Communion this time but, he should feel free to if he wanted to. I explained my concern to him.
His loving concern for me is so touching. He asked one of the associate pastors to put some of the wine into a separate cup for me. The associate graciously put several individual cups onto the table, one for me and any others that did not want to use the communal cup. I was thankful to my son and pastors for their understanding.
O.k. maybe dipping a piece of bread into a communal cup is no different than dipping a chip into some dip at a super bowl party (aside from the spiritual level) But, believe me I'll be rethinking that too.
There it is,  my concerns about weighing my health needs against others needs. I pray the Lord will help me find the right way to make my needs known without asserting them over others needlessly.
So that's been the past month. I continue to learn about my ms. I continue to experience it daily. Physically and emotionally. I caught a glimpse of acceptence this month. I felt a small change in me concerning my ms. I'm still not sure how this will all play out and I probably never will. I will walk this life and I will never be alone. My God walks with me.
Thanks for listening.