M.S. Awareness Day and What I Don’t Really Want You to Know

 

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Today is Multiple Sclerosis Awareness Day. To be honest, a part of me does not want you to know everything  I experience. Some of you, my friends, have Relapsing Remitting M.S. and some may only have a few attacks in your lifetime. I am so thankful for those who have that experience.  Others of you deal with your own battles in the trenches, M.S. related or not.

I happen to be one in the 10 – 15% of M.S. patients that have Primary Progressive. So, in spite of being only thirty eight years old my body has been aggressively attacking itself for over eighteen years. I did not get a diagnosis until at least twelve years into the attacks. I can relate to feeling like an elderly individual more than I can to a woman in her thirties. Yeah, sure, it is hard to believe. You see my size 6 body, my appearance somewhat neat and orderly and my rather large smile. I love to smile and love to make eye contact. It is sure hard to believe something is wrong.

What you cannot see is the inner battle of the constant unknown. Seasons, and temperatures, stresses, sounds and lights, almost anything can change my ability to move, ability to think clearly and so much more.  I have been doing amazing since beginning the Immune Therapy. I have been able to drive, stand up for longer periods in the kitchen, clean a little more and I am more emotionally stable but nothing is normal. Touch and I have a love-hate relationship. I love to hug and show physical affection but to hold my hand for long or rub my arm or leg can cause pain, numbing, and spider crawlies up and down my whole body. It’s a load of nerve craziness. Sexual intimacy is wonderful and still a priority with my spouse but it is like a delicate dance. I am fragile and can easily be injured. It is wonderful and exhausting.

          I may be walking well when you first see me and as soon as the sun is shining on me, my body warmth increases or any other number of irritations or stresses come my way I may be fighting to lift my legs and I may show signs of instability.   You might not be able to tell  unless you can read me really well. On my harder days and seasons, it is all over my face and body.  Keeping my legs strong has helped me to keep moving but strong muscles cannot totally overcome a nervous system that won’t send messages. My arms are strong because I exercise but holding them up to clean a window can cause incredible discomfort.  Something so simple can wipe me out. I actually enjoy cleaning so this is not something I like to hand off to other people. 

Struggles with my bladder and bowels have been going on since I was a child. It has only gotten worse over the years.The immune therapy and some natural aids  have enabled me to have normal bowel movements. Without the medicine my system is sluggish and what should be normal for a woman who eats as clean as I do, is nothing like normal.

Sleep is a battlefield too. Falling asleep is difficult when spiders are crawling up my legs-at least that is what it feels like. I use Cedarwood oil to ease that and it works. I wake up from sleep feeling like someone is pushing different parts of my body down into the bed-it’s really just heaviness from the warmth of my body. Pain pierces parts of my body and wakes me up. While on the Immune Therapy sleep comes, pain disappears and I awake much more rested.

M.S. hug is not a friendly name. It is really a horrible feeling. It may be around the knee or leg for me but more often it feels like someone has tightly wrapped a bandage around my ribs  and pulls it tighter and tighter and then loosens it just long enough to make me think it is done. At odd times it constricts making me feel like I cannot breathe. It can stir panic and fear and I have to choose to breathe deep and think calming thoughts of truth.

Oh, there is much more but really, I don’t want you to know everything. I just want you to know enough to pray that my immune system no longer attacks itself (which I believe we have accomplished  with the Immune Therapy-I will share an update on that later). I want you to pray the inflammation settles in my body so I do not have to live on this medicine. Most patients only have to be on Infeperium for a short period.  And please do not assume you know how I am doing just because you see me walking, smiling and appearing normal.  Normal has been stolen away from me by the dysfunction of my own body. I don’t really want you to know that I am insecure and sometimes worried that people think I am lying or misleading. I am learning to not be so worried about what other people think. I cannot always be reliable because I just do not know what tomorrow holds for me but those who truly know me and truly love me know I am sincere. I cannot worry what others think.  I am choosing to live for God and God alone.

If you want to know more about M.S. feel free to read this article that the Mayo Clinic  created.  

Please pray for all M.S. patients. Being diagnosed with a supposedly incurable chronic illness is very scary. Pray they make healthy changes so they can thrive and possibly correct their immune dysfunction early. Pray for their minds to think on things that are good, true and lovely. Pray for healing in the body, mind and spirit.  Pray they know the eternal hope of Jesus Christ. We have eternity to live without pain and trials. This time on earth is minimal in light of eternity. M.S. is not a death sentence but it can definitely change the person who battles it for good, better or worse.

“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary , but what is unseen is eternal.” 2 Corinthians 4:16-18

Praying for you today,

Charise

MRI Results–Bad and Good

A rush of emotions comes flooding over me with every  neurology appointment. This week it was the dreaded MRI follow up and news. It didn’t start  out well when the doctor shared that I had six plaque spots in 2013 and the most recent MRI taken in June shows that I have TWENTY. I experienced a sudden desire to melt into tears.

She quickly explained that this recent MRI was done with better technology and was able to “cut” into more depths of my brain than the last MRI. We really don’t know how many of these twenty were there in 2013. The radiologist was able to confirm that I have not had any recent relapses/no new scars. And this was very pleasant news.

This darling and gift of a Neurologist proceeded to break down where the damage is and where and how it is effecting me. It all made sense to me as I know full well all the areas of weakness, discomfort, pain, etc. She then told me, ” Keep doing what you are doing. What you are doing is working”. WHAT???? Yes, read that again. “Keep doing what you are doing. What you are doing is working.”

 She is absolutely in awe that I don’t experience more pain, less bladder control and more issues. My body is creating its own detours around all my damaged nerves. Honesty. I wanted to cry for joy! This is the first neurologist to encourage my natural efforts to battle this disease and she was smiling at me with awe.

She proceeded to look at my chart and upon remembering that I began M.S. symptoms when I was 20 or 21 she told me that she thinks I have experienced the worst of this disease. It won’t get worse. She gave me the first official diagnosis I have ever received of the type of MS she thinks I have. It is Primary Progressive. Only 15% of M.S. patients have Primary Progressive. Leave it to me to be one of the rare ones. :^)

This was the very first time I left a neurologist office without loads of fear, angst, frustration and anger. They usually look at me like I am an odd ball for  doing things so “against the grain”. I knew God was leading me from the very beginning. He lead me to get off Copaxone. Now that we know I have Primary Progressive MS, we know that the  Copaxone would NOT have helped me. I am so thankful for God’s guiding hand. He gives wisdom to those who ask. He gave me wisdom and in spite of the many naysayers I experienced in the journey, I am so thankful for the Holy Spirit guidance.

I am praying for you in your journey. Trust Him in the process even when you feel alone and weary. He is your strong tower.

” From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe.  I long to dwell in your tent forever and take refuge in the shelter of your wings.” Psalm 61:2-4

In my next blog entry I will share what I have been doing that doctor says, “Keep on doing!“. ;^)

Why I Don’t Go To An M.S. Support Group and Why I Might Need to Start My Own

I soaked in every word of a book on women living with M.S.. Line for line I read other women’s experiences, trials, battles, ups and downs and more than I needed to know. The negatively left me wanting. Wanting more of what I have had without reading such a book. At times tears filled my eyes and the entire portion of this ink filled tree left me dry and burdened without hope.

Is it bad to know I am not alone? This strange buzzing elecrtricity in my body and the heat senstivity and numbing and stares of strangers when “such a healthy looking young woman” would use a handicap spot or a walker or an electric cart? Oh, in all that comes with this illness, it helps to know I am not alone. Yes. But there is this great battle of the mind. How well am I protecting my mind if I only surround myself with sick people only getting more sick and negative people only growing more negative?

“He who walks with the wise grows wise, but a companion of fools suffers harm”, Proverbs says.

Could it be said, “She who always hangs out with sick people and reads about sickness and thinks sickness will be sick”?

If I were trying to lose weight but I only read books about food and hung out with other people who lack self control with food and went to places that had all the food I struggled with I don’t think I would succeed in losing weight. I would find myself in a losing battle.

I must be honest, I have a limited experience with support groups. I have never been to one. Laugh at me but every invitation I receive to a local meeting is supported (a.k.a. paid for) by a drug company. Yup. It is a big, fat opportunity for the drug company to push their drug and for doctor to get a hefty kickback for encouraging/telling his/her patient to take that drug. Every few weeks THE support group dinner invitation arrives in my mailbox and it quickly finds itself ripped to shreds and tossed into the trash. Those type of meetings are not for me. Not a meeting that tells me if I am not taking their drug then I will not do well. (My family attended one of “those” meetings while I was in the hospital right after diagnosis. Not so encouraging.)

I have been so blessed to meet other beautiful women who are fighting the same battle as I. We share and talk and encourage one another. We share some of the difficult things too and help each other work through it or pray through what we don’t understand. It is a beautiful thing. I never walk away from these encounters feeling discouraged and disheartened. I feel in awe, blessed, joyful that we get to walk this journey together. We don’t take joy in griping or dwelling in the negative. We speak life!

Life! Not death or dismal. We share Hope! Hope is what a real support group should bring.

“The tongue that brings healing is a tree of life.” Proverbs 15:4

“The lips of the righteous nourish many..” Proverbs 10:21

“The lips of the wise spread knowledge..” Proverbs 15:7

“The tongue has the power of life and death, and those who love it will eat its fruit.” Proverbs 18:21

Proverbs 15:23 says, “A man has joy by the answer of his mouth, and a word spoken in due season, how good it is!”.

How good it is to be with wise people who speak life into your soul! How good it is to choose to speak life to your own soul and how good it is to speak life into other souls!

Who will you surround yourself with? What goal are you reaching towards? Are you surrounding yourself with people who will cheer you on and pick you up and dust you off when you fall or people who will shut you down, and stomp on your dreams? Are you surrounding yourself with people who will love you in the raw and through the nitty gritty and speak hope into your todays and tomorrows?

You are worth it! Choose your friends well and be the friend you would like to have. Whatever support group you join, make sure it is a group of people who speak life into your mind and your soul!!! Their words have power to give life or death. Choose life!

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This dear soul (on the left) is one of my life giving friends. I am so very thankful for my soul sister Joanna.

If you do not have life giving people in your life, pray and ask God to bring them to you. He will! I believe it! I am praying for you too!

 

With joy,

Charise