A Letter From Your Friend with MS

Dear friend,

I hope this letter finds you well. I know that you have been wondering about me – specifically, about my MS.  As I share some struggles, please know that I am happy and healthy in every other way! My every day is filled with JOY! and peace, and God truly is my strength and comfort.

People say, “I have MS, but MS does not have me.” That was pretty easy to say the first 21 years. At this point (year 26), every single movement screams MS has me! As I sit still to recover from any slight activity (like making a sandwich), even the sitting screams, I have MS!  I’m not sure I have a moment of thought that doesn’t hold in the background the fact that this disease is present in all aspects of life.  Friendships, weddings, church, work, housecleaning, grandbabies…nothing in my life will not be touched by this disease.  But I believe there will be joy and victory in it without a doubt.

The past 5 years have been a gradual, but steady progression of disease. I believe my MS is fairly typical in its resulting disability, my extremities being affected first. Thankfully, mostly one side has been affected, the right side. I say thankfully, because my strong left side has been a blessing. I have learned to eat left handed. You can quickly become left handed, if necessary, to eat!

Not walking well has been difficult. Without a brace to correct severe “drop foot”, I cannot walk. However, not being able to use my hands and arms is worse than struggling to walk. Fine motor skills are exhausting. Our nervous system must work very hard to send those messages!

All if this is old information, but now we come to what you really want to know. How am I today?

Well, in June I had an exacerbation. My neurologist says it was a “breakthrough” of activity despite being on a disease modifying treatment. Phil and I had some scary, sleepless nights as the disease was attacking me in new ways.

Dear friend, I truly believe this is harder on him than me. I weep for that fact and pray for his strength, as I simultaneously give thanks for the true heart of a caregiver which belongs to my husband. 

My biggest fear in the midst of this exacerbation was the thought, “what if this is the (rare) side effect” of my tecfidera? I had headaches, joint pain, new weakness… all listed warning signs of a terminal brain infection…(also pretty normal symptoms of MS…go figure). I tossed in bed for a few nights, praying for God to protect me from this disease, and its treatment.

The worst passed, and I am thankful to the many who prayed me through, and for those who pray on a regular basis (I kept this one close to the vest, sorry if you didn’t know the specifics).

My MRI showed no new lesions in my brain (huge praise!), but an increase in areas of my spine which explain my symptoms.

So, again, how am I today? I am facing a new “normal”. After this exacerbation, I am weaker. I tire quite easily. I am experiencing new numbness and tingling on my left side (previously not effected). My face and lips tingle if I do too much. My right hand would rather not be bothered and lets me know. I have graduated from cane to walker – which is a relief, really, and easier on my back. We are working toward getting me set up on the ground level. Stairs are too hard.

I have faced a new “normal” before. After the initial complaints from our bodies, and struggles, we find new ways to do things. We adapt. We find our victories, and find the strength to do more than we thought possible. I will get there. Until then, Phil has been waiting on me, and I kind of like that. Maybe you could send me a bell to ring? He would love it, don’t you think?!

God bless & keep you, my friend.
All my love,
Your Friend with MS

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
2 Corinthians 12:9 NIV

 

Advertisements

Retreat!

I haven’t updated you yet. Retreat was the first weekend in May. You knew I would have a wonderful time, didn’t you?

It was nice to be a part of such a wonderful group of friends for the weekend.  Everyone took turns helping me.  I used a wheelchair, or rather, I sat in one while someone else muscled me to wherever we needed to be.  All of the food was buffet style, and the girls served me at the table. I didn’t complain to my waitress or send anything back!

Saturday afternoon was free time.  I kind of wanted to ride a horse, but it was downhill and I didn’t want Kelly to have to push me back up the hill in the wheelchair.  (At some point I realized we could have driven up and down the hill. Maybe I will ride a horse next year!) Instead, we explored the grounds trying to find the pool and the thrift store. It was not paved, so the going was rough- mostly on Kelly, and maybe a little bit on my backside.  Mission accomplished! Thrift store shoppers rejoice!

Let me tell you, that girl took a good nap when we got back to the room!

Sometimes you need to get away with your friends. Even if you have MS. Even if it might be hard to navigate.  Even if you are weak most days and wonder how this will ever work.

I relaxed with my friends. I was able to save my strength because we used the wheelchair and did not try to navigate through a buffet with a walker. It was a relief to let them help me. It was a relief to not spend my energy trying to walk. The teaching was good, the time together was amazing . We laughed (and laughed and laughed) and enjoyed every minute. These women are the hands and feet of Jesus. The love they showed me was literally my strength for the weekend.

How often over the many years have these women been my strength and I had not even thought about it? They are faithful to love. They are faithful to pray. They are faithful to come alongside. I am so thankful for them.

How can we be someone’s strength today?  God bless you, my friends.

 

Vulnerable

My son is getting married. For about a month, I have been really wondering what I’m going to wear. I’ve been shopping online, not finding anything. Purchased one possibility only to return it (and still miffed at spending $9.50 shipping). Ventured out on my own one day to Fred Meyers and used a scooter. I went around the outside edges of the women’s clothing department, eyeing the racks in the middle, trying to spy out an item that I would be willing to walk in for. Probably should have brought some binoculars! Luckily I did find something pretty on the outer perimeter.  Shopping is a big effort for me. Trying on clothes is avoided. I decided to just take the one top home and try it on there. I like it, but it’s not exactly right.

My neighbor Charlene and I often go out to lunch and get our nails done. I shared with her, of course, that I had not found anything to wear to the wedding yet. She suggested that I go shopping with her. My first thought was how difficult that will be, but I am feeling somewhat desperate, so I agree. We planned to go on Monday. Her daughter Julie can come that day. Charlene tells me that Julie picks out the best things. (Turns out that is true!)

Shopping.  I used to enjoy it.  It was never a passion, but I enjoyed it.  Now?  Quite honestly, I find it hard to even move hangers in a rack of clothes, and having too many options in front of me is overwhelming.  A whole store full? – Oy!  My hands go numb, and it is difficult to stand or hold myself upright after awhile. So having Charlene and Julie with me to pick out a few things eased the burden. We quickly found seven beautiful tops.

We had spotted a wheelchair when we first walked into Kohl’s and kept that in mind. It seemed like a trip to the restroom might be a good idea before I started to try anything on. Now you know, the restrooms are always ALL THE WAY in the back of the store. I started walking with my cane and about halfway there, the beautifully squeaky clean floor was my nemesis, threatening to trip me up with each step. I continued on, but sent Julie back to grab that wheelchair.

Now, on to the dressing room! The first top I tried on was beautiful (Julie’s pick). I walked out to show my friends. The second top was beautiful (again, Julie’s). I showed them that one. This is going to wear me out… Luckily the handicapped dressing room opened up and I asked Charlene and Julie join me so I wouldn’t expend so much energy. And I was glad that I did because it turns out two tops is my limit. After I slipped on the 3rd top, I could not take it off without help. My arms would not go over my head and I could not feel anything with my hands. Oh, and there are some complicated tops out there. Attached camisoles, Fly Away outer shells, all attached and creating quite a puzzle! Julie had to find arm holes and keep cami straps in place for me.

So there it is.  My vulnerability.  I need help. I know it is safe for me to ask my friends for help, but this is certainly nothing I had ever planned on or prepared myself for. It was terribly awkward for me to admit that I couldn’t even take a shirt off without help. That’s a little bit too much vulnerability.  Knowing how difficult shopping is, I had already opened myself up in just accepting the offer.  They did not go shopping that day for themselves, they were there for me.  They even brought me a coupon!  I would be safe in my vulnerability with them.

No matter how much I didn’t (and don’t) want to be vulnerable, there it was, it was obvious. I needed help.  I needed to ask for help.  I needed to let myself be helped.  I needed to let myself be vulnerable.

More adventures in vulnerability coming in May. I have signed up for a women’s retreat. What am I thinking?!  My maximum away from home has been 3 hours, not 3 days for the past few years.  I’ll let you know how that goes.
Writing this blog is also an adventure in vulnerability. One that I have avoided for a couple of years, but here I am.  Being willing to be vulnerable.  Somewhat.

New Dragon Naturally Speaking Software for this Girl

Today I set up my Dragon naturally speaking software. This is my first try at using it!

I’ve been hesitant to write anything as my MS has progressed.  I have found typing for more than 15 minutes to be almost impossible.  I’ve also been working the past couple of years, so, you know, I have been busy.   I had the privilege of teaching algebra for the 2012-13 school year (one of the best years of my life). Then this year I started as Office Manager for my husband’s company(eh, it’s a job $$).  It is just a few hours each day, but I have a limited supply of energy. I am ready to start blogging a little bit more again especially if I don’t have to spend any energy typing.

It will be interesting to see how I write while dictating. It seems foreign to think out loud with my voice. I often write in my head, but it is transferred to paper, or computer.  When I write I have always loved putting my pen to the paper. The process of actually writing something down has always been the way I thought things out.  As I would write and rewrite, my thoughts would come together as something I would like to share.  This voice thing might be easier, but I need to get my story straight before I start talking!  I can feel myself rambling already…

So forgive me if my writing does not come together quite as well. If I ramble, if my thoughts seem disjointed, if I miss more punctuation, or if I am adding words in places where they should not be! It is my learning curve!

I have wanted to share some things about MS again, and specifically about my MS. So now I have no excuses. I will work on posting more often.  See you soon!

A New Purpose, from Our Daily Bread 8/12/11

Our Daily Bread

Friday,
August 12, 2011

A New Purpose
Read: Acts 9:1-9
I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope. —Jeremiah 29:11

A 60-year-old hotel in Kansas is being renovated into apartments. A rusty ship that is docked in Philadelphia is being restored and may become a hotel or a museum. Hangar 61, an admired piece of architecture at the old Stapleton Airport in Colorado, is being transformed into a church. Each structure had a specific use that is no longer viable. Yet someone was able to see promise and a new purpose in each one.

If structures can find new life and purpose, why not people? Think about these men in the Bible whose lives took an unexpected direction. There was Jacob, who wrestled with the angel of the Lord (Gen. 32); Moses, who talked to a burning bush (Ex. 3); Paul, who was temporarily blinded (Acts 9). Their stories were different, but all had a change of purpose when their encounter with God sent them down a new path.

We too may experience circumstances that change the course of our lives. But God reminds us of this: I loved you before you loved Me. I want to give you hope and a future. Give all your worries to Me because I care about you (1 John 4:19; Jer. 29:11; 1 Peter 5:7; John 10:10).

As you cling to God’s promises, ask Him to reveal new direction and purpose for your life. — Cindy Hess Kasper

  God has a purpose for your life, So what you have to do Is follow Him, believing that He’ll keep directing you. —Sper  
  Keep your eyes on the Lord and you won’t lose sight of life’s purpose.  

Staring

It’s not polite to stare.   Don’t stare at others, it makes them feel uncomfortable.  It is rude.  But, people don’t always notice when someone is staring.  Is it okay to stare if I don’t get caught?  People are so busy, maybe they are too busy to notice me staring at them.  I find myself watching people walk.  I notice if they walk slowly, or if they are using a walker, yet seem kind of young for it.  I stare because I wonder what they are struggling with.  “Do you have MS,”  I want to ask? 

I like staring.  I don’t stare only at people.   Maybe it is the photographer in me.  I am always looking at everything.  I stare at the clouds, or at light playing through the leaves.  There is contemplation in a stare.  I stare at a flower.  I fix my gaze, and looking intently with my eyes wide open, I take note of everything.  As my thoughts deepen, my eyes glaze over, and I am no longer looking at the flower, but almost looking through it.  I stare, and the flower goes out of focus.  Like looking through a veil, no longer a crisp image, it becomes soft color and dappled light.  I am inside my head with thoughts that swirl all around that flower. 

Lately, I have been staring at my life.  I look at my leg, the one that has lost muscle.  It is my nemesis, my own body fighting against me.  I feel like it doesn’t belong there, not the way it is at least.  I stare at it, contemplating how to conquer it, how to gain strength and maintain health.  My answer is calf raises and stretching.  I could do 30 or 40 raises at a time on the left leg – pop, pop, pop, up strong every time – but the right leg struggles for 15 slow movements.  My left side is literally unaffected by this disease. 

I am staring at myself, staring at my life, trying to find the will to get out of the chair and attempt exercise or do a little housework.  Am I really that tired, or is this depression?  I never use that word.  No, not depression, I really don’t believe that for a second.  The possibility flits in and out of my thoughts, but, no, that is not me.  When I saw Dr. Kita, she told me that lesions in the spine tend to cause fatigue.  Is tiredness a good reason not to push?  Am I being lazy?  Just look at yourself.  Really look.  How do you feel?  This isn’t laziness.  I am weak.  Why is it that my nervous system not working affects the strength of my body to such a degree?  I guess if  my brain can’t get the message across to the leg to move properly, strengthening will be difficult.  Everyday, I try to stand on my right leg more, hoping that will help.  I do a little exercising, but I have overdone that in the past and experienced set backs, so I am tentative.  Exercise puts my nervous system on edge.  Every neuron starts firing, it is as if they are working overtime trying to get my leg to move.  Then when I am done, I am exhausted.  Is 20 minutes of exercise really going to make a difference if I need a nap afterward?  It has to help.  Right?  Right. 

There are problems with balance.  Not horrible, and some days are better than others.  Standing in line at a church pot luck the other day, I was glad my friend was there to hang onto when I suddenly lost my balance just standing there.  I needed a person or a wall for a second to regain balance.  Do I need to use that cane?  I tried it one day.  (Hated it!)  A walker would be easier for exercise.  I am way too young to use a walker.  Besides, then people will be staring at me!  But if I had one, I could take a nice walk in the neighborhood.  Wonder if they make one with bigger wheels for hiking?  Silly girl, you are not going hiking.  I like going to the grocery store.  The cart is easy to hold on to, so I can stroll slowly around without advertising my unsteady gait.  Maybe I will get a grocery cart for that walk in the neighborhood.

What is life going to look like if I can’t walk?  I know I am not there yet, but so much of life is wrapped up in our physical ability.  Even I kind of define myself by what I can accomplish.  What’s my definition without my physical ability?  What will accomplishment be for me?  Well, it won’t be yard work.  That is for sure.  Do I write?  Do some accounting?  Paint?  Photography?  Even my photography is limited by the MS.  Unless I set up a nice studio here at home….now that might be something.

Staring into my life with MS becomes a constant conversation about the what ifs, and how to overcome, and what if I can’t overcome?  The truth is, there is not a way to “overcome” MS physically, but I can have a positive, overcoming attitude, and realize that I can trust God even in this.  The difficulties I am having are more than I had anticipated at this stage, and my thoughts about it are never-ending, but I know I can’t keep staring at the leg.  I need to take my eyes off myself and focus on new possibilities, possibilities I never would have considered or explored if I were relying on my own strength.  Trusting God means moving forward, not just sitting and staring. 

“Do not fear, for I have redeemed you;
   I have summoned you by name; you are mine. 
When you pass through the waters,
   I will be with you;
and when you pass through the rivers,
   they will not sweep over you.
When you walk through the fire,
   you will not be burned;
   the flames will not set you ablaze. 
For I am the LORD your God,
   the Holy One of Israel, your Savior;                                                                                  ~Isaiah 43:1-3

Reality Check

MS has been easy, definitely not a huge struggle for these 20 years.  I am getting my first doses of reality now.

When I started this blog, I had thought I would be following my progress as I fought to stay physically strong.  That process has a definite ebb and flow…  with emphasis on the ebb.  I was quick to think I could do anything in my own physical strength.  What do you do as that diminishes? 

I am losing my balance much more often.  I am wondering how cool I can look sporting a cane – even checked some out online.  It just seems that this wave of the disease is coming at me with tsunami like strength, seeking to drown me.

Oh, that is so dramatic!  Normally, I am a terminal optimist.  I hate the way I am feeling about this.

This past week, I did a regimen of steroid treatments.  Dr. Kita tells me that many people do this on a monthly or quarterly basis for the physical boost it gives them.  I have done steroids in the past for a few exacerbations with no problems at all.  This time, it really affected my sleeping.  Horrible insomnia.  I was prescribed Ambien to get rest, but it left me feeling very wiped out.  Exhausted yesterday, I gave in and took Ambien again last night, and finally got my first good night of rest in a week.  Maybe it wasn’t the Ambien that was making me feel so weak.

On a side note,  steriods give you the munchies.  I like that part of it.  I have a bag of fritos to demolish today.

Keep me in your prayers.  I will return in my next post as the indomitable, terminal optimist.  I am learning a new thing about trusting God.  He has always proven his faithfulness to me, and I know that I will find my strength in him.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  ~ Jeremiah 29:11

“Here…I can fix it…”

What are you trying to do?  Do you need some help with that?  Ok, you figure it out….  

Then I wait patiently until they need me.  I love to fix things.  I am good at it.  (I just need some more tools, and maybe a book on wiring & plumbing).

When I started the Ampyra, I really thought it was going to be a great help to me.  Walking faster would equate to gaining strength.  If I can walk faster, I will certainly be able to walk further, right?  Or maybe not.  This past month or two, I have had increasing trouble with balance and walking.

I need to fix this. 

In thinking it through, I realized the correlation between starting Ampyra and having more trouble walking.  Yes, it is summer, and warm weather can cause MS symptoms to worsen, but we have not had a lot of hot weather.  What plays over and over in my mind is the small percentage of people who experienced relapse or balance disorder in the Ampyra trials.  Maybe that is me.  I am one of the 4- 5%.  So for now, I am going to stop taking the Ampyra.

Ampyra doesn’t do anything to slow the progression of this disease, so I think it is a good idea to just stop taking it and see if that helps.  I will let Dr. Kita know that when I see her again (soon).  Phil accuses me of thinking I know best, and of being stubborn.  Of course I do, and I am.  Usually, we have a pretty good read on our bodies, and we should think for ourselves.  I am not saying that I won’t try Ampyra again after I talk to my neurologist, but for now, I will try a few weeks without it.

Amped!

I have been on Ampyra for 2 months now.  This medication is really making a difference. 

I saw Dr. Kita last month and I did the same walking and coordination tests that I did back in April.  I knew the medicine had, at the very least, improved my energy levels.  When I was seated in the exam room to wait for the doctor, I was surprised at the memories that came to me from that day back in April.  In April, I walked in on weaker legs.  At that time, putting one foot in front of the other seemed like a skill that I might be in danger of losing.  The walking test was just a simple timing of my pace up and down the hallway.  The coordination test required placing pegs into holes and then removing them.  As I considered how I felt that day in April, and compared it to this day, I realized how much difference the Ampyra had made in such a short time.  I had only been on the medication for one month.  Having MS, you just don’t expect a medicine to make such an impact.  You get used to the idea that your body may fail you at some point.  In that short stretch of the walking test, I improved my time by 2 seconds (and it is a short hallway)!  I had not even known that my hand-eye coordination had been affected in April, but the time for that test improved as well.

The other thing I want to tell you, if you do try, or recommend this drug to anyone is about the side effects.   The first month, I did experience headaches and insomnia.  Getting the timing down for taking this medication twice a day helped with the insomnia.  I take the doses 11-12 hours apart, and I always take the first dose right when I wake up.  If I miss that evening dose by more than an hour, I skip it.  Sleep is important.   Also, the increased energy that I now have has gotten me up and moving more, which helps me actually be physically tired each day.  So now, I am getting even better sleep.  The headaches also went away after that first month.  Maybe they were caused by that lack of sleep!

Those first few weeks, I could swear that I felt the Ampyra coursing through my body.  I do have a vivid imagination, but I also felt physically “amped.”  That actually is what the medicine does,  it speeds up those neuron transmissions; I think I could actually feel that working.  I am Amped!  Not only physically, but in my spirit as well.

Ka Me Ha Me HA!

Ka-me-ha-me-HA!

I saw my neurologist, Dr. Kita, a couple of months ago.  I made an appointment to talk about difficulties I am having with walking.  She assured me that I was doing well, but I pressed the issue.  I understand that my disability is not very severe, but I wanted to know what can we do to strengthen my body and keep me moving for as many years as possible.  I want to remain strong, and walking for exercise is going to help me stay healthy.  She began to tell me about a medication called Ampyra.  It is a new drug, just approved by the FDA in January 2010.  In explaining how the drug worked, I got a little science lesson from Dr. Kita.

In short, our neurons gather a charge and send it out to the intended target.   The MS patient has lesions or scarring in the myelin sheath which insulates the axon and nerve endings (the path on which the signal is carried).  The demyelinating areas slow and weaken the transmission.  Our nervous system initiates these transmissions in the brain and spinal cord, so the longest path the transmission has to travel is to the legs.  The farther the charge has to travel over scarred areas, the weaker it can get, and sometimes it will even fail to transmit completely.

Dr. Kita explained that Ampyra helps the neurons gather a larger charge before transmitting the signal.  That larger charge allows the signal to power through the scarred areas.

I was fascinated with the science lesson, but when she said “gather a larger charge,”  my mind immediately went to “Dragon Ball Z,” a cartoon I used to watch with my son.  All I could think of was the character, Goku, putting his hands together to gather his Ki power, which he is then able to release in an explosive beam of energy.  As he gathered this power, he would chant, “Ka-me-ha-me- HA!”

So that is where I am.  Gathering neuron powers to summon my legs to do as I wish, with the help of Ampyra.  I just started taking this medication on Monday.  I will keep you posted.

Ka-me-ha-me-HA!

« Older entries