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."

Saturday, October 7, 2017

The Visible Tag Team

I went in to town the other day to get my flu shot for the year. Hard to believe it is that time of year again but here it is.
I've gotten a flu shot  3 or 4 years now. Our son, G, has gotten one since the age of 5 to help combat any adverse effects the flu may have on his diabetes.
We've Thankfully dodged the flu these years. Either the flu shots have worked or we've been more careful washing up, or our homebody lifestyle, one never knows. Maybe a combo of all. However it is, I never want to risk getting sick (er). Why risk  compounding the ever present malady with something one can possibly avoid?
I was asked once my reason for getting a flu shot. I replied,  that I simply have two reasons.
1. I never have trouble with the flu shot.
2. I always have trouble with the flu.
That pretty much boils down my reason.

My locale grocery store is where I've been getting my shot. (G gets his at his general practitioner's office)

 We've been shopping at this grocery store for years. It is not one of those huge supermarkets. (thankfully)  It's got a hometown feel to it and it's reasonably close to our home. We've grown to know what to expect there and like the staff. G is comfortable there and that is paramount. They are kind to him.

This day I asked him to do the lion's share of the shopping while I got my shot. He agreed and got the cart. I gave him the list and the bags as well as a reminder not to leave the building without me.  We parted ways and after a time he joined me at the pharmacy as I settled my bill for the shot.

It was then that I received one of the kindest compliments I've ever got. At least I took it as such.
The gal at the register told us that she has worked in the pharmacy a very long time. She remembers G when he was really little and has watched as he has grown up. She told us how she has seen the way I've helped him do the shopping and sees how it's changed over the years.  And now she sees how he helps me.  I was so touched by her comment. I smiled and simply said it has worked out well for us. We "tag team" the days. And truly it has and we do.
I thank God for G. And I am grateful that this gal told us (me) that.
It blessed my heart and made me feel less invisible.

Thankful to The God of All Wonders. Who directs are path. 

Saturday, September 2, 2017

September 3rd - Never a Happy Unnaversary

unnaversary

the day that commemerates the beginning of life after ending a relationship that made your life miserable

"It's January 15th!!! Im celebrating my first unnaversary!!!!"

#marriage#break up#split#anniversary#divorce

by ljtm January 15, 2009




This definition shows up on Urban Dictionary but I found myself using this concerning my MS diagnosis after the first year.
I was surprised that it was in use by others. Though my "Unnaversary" definition is different than what seems to be a common usage for a celebration of a spilt up relationship.
I never celebrate my unnaversary. Never! But I find it hard not to note the day my life changed.
So, today is my 7th Unniversary. 7 years of learning how to live with an unwanted partner that I am unable to split from, break up with, or divorce. 
Though this is a fact of life now I am willing to say I'm doing o.k.
I don't like this new life but I'm surviving it. MS  has stolen a lot from me but it has brought me to a place of more reliance on God. A great trust in Him.
So on this day. This unnaversary I won't say Happy.
I will say. Thank you Lord for being nearer to me, dearer to me. I'm alive and doing fine.

Tuesday, August 1, 2017

Of Loss. Loosing one's identity.

I have been mindful, as of late, of loss. It's been on the front burner for some time. I have been dealing with variations of loss since my diagnosis.  7 years, next month. I can't say it's been easy but, there have been times of acceptance.
Over these years there have been other forms of loss as well. They don't seem to diminish the loss already experienced. They just seem to add to it's weight. However, This year has dealt the biggest blow thus far.
So I admit, I've been more depressed than what is usual. Though depression isn't the right word for it. I'm in mourning.
I think I've talked about mourning on this blog before. Something about finally coming up out of the cognitive mud. Just up enough to realize what's been happening, that I've burrowed in, for sorrow's sake, for mourning's sake.
This passed couple months I've been dwelling on loss. I've been reminded of other losses endured as well as the current. Ones of my own and ones of others. It's like I've been trying to recall the losses to try and glean from them. To try and learn how it was gotten through. How did they make it through that time? How did I make it through those times? How are we going to make it through this time? Is there any bits, tiny morsels, any wisdom from the past that can aid us now?
I rely on prayer and the help of my Lord and Saviour. Truly an every present help in times of trouble. (Psalm 46:1 KJV God is our refuge and strength, a very present help in trouble.) I rely on the passage of time. I cling to the Blessed Assurance like it is a life boat. Because it is.

My analytical mind searches for the "why" of loss though. Why do we feel it in so many different forms? Loss has so many different aspects to it. One's loss is sometimes not like an other's loss at all. And we wonder why that effects others and not ourselves. Or why doesn't that effect them but is so profound for me?
I think this week I caught a glimpse of this "why" for me. And after much pondering I have been able to boil it down to one thing. "Identity".
The loss I seem to mourn mostly is the loss of my Identity. Wow. Does that sound selfish or what. But it is true for me. My identity, one's identity, is really all we have. Who we are is all we have that is truly our very own.
So it seems to me that when we lose someone, something, some anything that affects our identity, it hurts. It hurts! Mourning is the protective action that helps us until we can regain our identity. Or in most cases, until we can assimilate the hurt, the loss, into a piece of our new identity. I honestly can only speak for myself.

Consider this.
When you lose something, one wonders how can I live with out that? The thing being small or large is mourned over. One  goes threw the process of figuring out how to live with out it. If ones identity is wrapped around it, I believe,  the loss has a greater impact.
An object can be replaced. The identity can be restored. Or the item doesn't get replaced one accepts life without it and one's identity is altered. Largely or minutely. Maybe the loss forms a stronger identity, one that doesn't need that item.

Consider this.
Fellow MSers or those with cronic illness may relate. When one loses an ability. An ability that allowed one to do a favorite hobby, job, or life skill. The loss is great.  It involves identity is a huge way. On a personal level. I was a waitress. I was a motorcyclist. I was a dogsledder.  I was a hiker. I still mourn the loss of these. My identity is/was shattered. I still haven't figured out how to get threw some of this. I am reliant on my Lord and Saviour to guide me. I am clinging to the Solid Rock as my identity. Child of God. Follower of Jesus Christ.

Consider this.
When you lose some one you love dearly. Mourning replaces everything. Everything. The loss is too great. How does this fit in to my idea of identity? You indeed miss the person. Deeply so. One grabs on and hangs on to every precious moment of time with them. To try and retain the feeling you had when you were with them. Who you were when you were with them. Your identity is wrapped up in it all. The identity of who you were with them. You have not only lost them, you have lost that part of you. The mourning, the sorrow runs deep.

Not one person can honestly say they have not experience loss to some degree. It is a consistent factor in this life. I don't have an answer to how one should get threw any of it. However, I trust in God, The Father, and The Son, Jesus, and I thank God for The Comforter, The Holy Spirit. I am trying to ground my identity in Them. The Holy Trinity.

Lord God, Comfort those who mourn. In Jesus Name, Amen

Identity.
I am a Child of God. A follower of Jesus Christ.
I am a wife. 
I am a mother of two grown men. One who has a lovely wife (I am her mother-in-law)and a beautiful daughter (I am her Gma)
I have MS. I hear people often say "I have MS but it doesn't have me." I can't seem to agree with this statement. MS is a huge part of my identity now. Not a good part but a part none the less.
I am a daughter of a wonderful woman. Though she is no longer my counsel. I am unable to confer with her to benefit from her kindness, her wisdom, and her life knowledge, but I can use the things I've gleaned from watching her throughout my life.
I am a daughter of a wonderful man whom I am able to share with and learn some lessons of loss together. 
I am a sister. By blood to some and by circumstance to others. 

I am a Beekeeper.
I am a reader and a writer.
I am a shadow of who I was but am trusting in The Lord to see me through this life. Trying to wrap myself into His Identity. So help me God.


Romans 12:15
New International Version
Rejoice with those who rejoice; mourn with those who mourn


Ephesians 4:32
King James Bible
And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ's sake hath forgiven you.

Thursday, February 2, 2017

Groundhog's Day.

Happy Groundhog's Day.

It's been a long winter already and no matter what -we have until March 20th before it's over. Don't know how this tradition started but that's o.k. I don't know how a lot of things started. (Google it.)

I've been waiting to post here for some time now. But really haven't had much to say. I'm in a kind of "Groundhog"  scenario. I've kind of stalled out.  Our days are slow moving because I'm slow moving now. (MSers well understand this.)

Back when I was able bodied I use to call these slowed down winter days "the Horse Latitudes" or just "horse lats". (Google it.) I would kick against, buck these times like crazy. I hated these times. Now I live in the "Horse Lats" year round. Can't hate 'em now.

I'm hoping I'm not sounding like a whiner. This is just the way it is. (MSers will understand this. Actually, Anyone with chronic illness will understand.)

I am doing reasonable well. My Neuro calls my type of M.S. slow progression. I call it linear. Even. I feel the same daily. Things I've lost remain lost. Not so worse. No better. I am grateful for that. If I'm having flares, they are hidden. The latest M.R.I. Will be the judge of that. (My husbands says it's not so invisible anymore.)

Back to my Horse lats, I've been living here year round.
I woke up this Groundhog's Day remembering the movie of the same name. You know the one. With Bill Murray. He gets in some kind of time loop where he lives the same day over and over and over. (kind of how all our lives can get sometimes,  my horse lats*)

Anyway. It's humorous. Bill Murray.
 I don't believe in the time loop belief,  or any metaphysical events. I just don't. It just doesn't  match up with my Faith.**  But I have taken a couple "gems" from this movie that have served me well.
1. Try not to hate your situation. (Murray's character made some really bad choices concerning this.) 2. Don't waist  time. ( Even though the days seem the same and endless, do what you can. Even if your world seems small, there is always something to do. I read, I study. I try to learn. (It's not great big studies but, they help me.)

For example, In the movie, Murray's character learns piano, French, medicine, he studies the people around him and ends up helping them through their day. O.k. he has lots of time to do these things. Lots of time!

Well, me too. "Horse Lats"

Please don't be sorry for me. I'm not sorry for myself. I am using this time. To learn. To try and be kind to those who I'm around.

Happy Groundhog's Day!



* Here. the horses are never tossed overboard or hurt in any way.


**My Faith is in God.
Genesis 50:20 ... but God meant it unto good, to bring to pass, as it is this day, ...