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15 September 2012

My Unusual Invisible Illness with Betsy Allison Tant ~ Learning to Live with Transverse Myelitis ~



This week is National Invisible/Chronic Illness Awareness Week.
If you are just catching up, begin here!

~ ~ ~
About 5 years ago I began following a blog 
written by a woman who lives in east Tennessee.
I also follow her on Facebook. 
Through this blogger I met her sister, Betsy, who also lives 
in east Tennessee.
Although Betsy does not blog, we became Facebook friends.
And last spring, when Betsy became so ill, I wrote to her.
Sharing about my life with Invisible/Chronic Illness.
Since then, we have formed a wonderful friendship. 

Here is Betsy's story...so far.






I have an invisible illness. 
It causes me terrible pain, fatigue, weakness in my left side and other problems that are too embarrassing to discuss. 
I'm on numerous medications to control symptoms. 
At times, some of them help. Other times the illness is stronger than the medicine. Some days I sleep all day or just spend the day in bed writhing in pain. 
Other days I can handle a trip to the store or a couple of loads of laundry. 
If I want to accomplish more, than that it is like running a marathon. 
It exhausts me and I pay for it for days. 


What is your guess about what my invisible illness is? 
MS, Lupus, Fibromyalgia? 
I would guess one of these too. 
That's because these are illnesses that alter or even ruin the lives of millions of people every year. 
They are usually undetectable just by looking at the person who has them. 
I have an invisible illness much like these but it is one that is not common, not easy to explain and not easily treated. 
I have Transverse Myelitis. 
Or TM, as it is nicknamed.


Betsy's 3 gorgeous children!

Before April 12, 2012 I was a healthy 42 year old woman with a wonderful life.
 I run a non-profit, Henry's Fund, part time.
I have a husband and three kids aged 5, 10 and 13. 
Life was great. Not perfect, but great. 
Then one day I was driving to pick my kids up from school and out of nowhere I felt a horrible electrical sensation throughout my entire body. 
It felt like what you would imagine it would feel like, if you stuck your finger into a light socket and a strong electrical current started flowing 
through the core of your entire body. 

I picked my kids up and drove home.
When I got there, I immediately crawled into my bed. 
I was writhing in pain but I was trying to act ok for my kids.
 I had fought a bout with the flu two weeks prior but had been feeling well for the last few days.
 I started thinking that I must be having some sort of relapse. 
By the time my husband got home I realized that something was going on with my
body that required medical attention. The first thing I said to him was that I was pretty sure that I needed to go to the emergency room.

 Let me clarify something. I have a very high threshold for pain. 
I've had three babies with no drugs. 
I've had many painful surgeries and fought back with a vengeance. 
This was unlike anything I had ever felt. I decided to call my friend who is a doctor. I described what was happening. She was baffled. 
She called her friend who runs the ER I was planning on going to. 
He said to come in immediately. 

You know how 90% of the time when you go to the ER you get sent home? 
That's what I expected. But when I got there the doctors seemed very concerned. They said something about Guillaine Barre Syndrome. 

They finally gave me some IV morphine. 
I had morphine when I had a gall bladder attack and 
I remember that it took the pain away completely. 
This time it helped but the electrical pain was still there underneath 
a blanket of morphine.
 I also began to have weakness in my left leg and arm. This terrified me. 
After hours of poking, prodding, and discussions, the doctor came in and said that they were admitting me for more tests.

 I was relieved. 
The thought of going home was terrifying to me. 
I thought I might die from whatever this was. 
 Over the next 6 days I had 21 vials of blood drawn, 5 hours of MRI tests, X-rays, 
a spinal tap (not as bad as I expected),
 a nerve conductivity test (way worse than I expected) 
and countless other tests I can't remember. 
On the 2nd day they had ruled out Gullain Barre 
and were moving on to other possibilities.


By the 4th day my team of neurologists were leaning toward 
a diagnoses of post viral acute Transverse Myelitis.  
When I had the Flu or Virus 2 weeks before all this happened, my white blood cells had attacked the germs (good job, WBC!).
But after the germs were gone my white blood cells got confused and started attacking the Myelin around my spinal cord (bad job, WBC!!!). 
Myelin is an insulating layer that forms around nerves, including those in the brain and spinal cord.)

 Over the next 2 days they did more tests. 
My neurologist informed me that he saw a small lesion 
in the cervical region of my spinal cord. 
This meant that the damage was in an area of my spinal cord 
that affected my entire body. 
But there was good news that came with that.....
most people with cervical lesions end up paralyzed. 
Every day since hearing that I try to remind myself of that gift.  

On day 6 I got to go home. 
After much discussion my neurologist and I decided that we would try a course of injections of a medicine designed to produce natural steroid hormones to reduce inflammation in the spinal cord.  
Other than that all we could do is treat the symptoms and the pain.


I thought that I would be thrilled to get home. 
I wanted to be with my family and in my own bed. 
But when I got there it hit me that I had no idea 
what was going to happen with my life. 
I was sent home with a bunch of prescriptions for medicines that might or might not help with my symptoms and pain. 
I climbed into my bed and, except for medical appointments, I pretty much stayed there for the next several weeks.


I was, and still am, incredibly lucky for the wonderful family and community of amazing friends that I have.
They brought meals, drove my kids to and from school, visited me and drove me to doctor appointments. 
Eventually though, as I realized that this wasn't going away, I began to force myself to get up and move around more. 
It wasn't easy because nothing much had changed with the pain or weakness on my left side, but I had 3 kids who needed me.

Nancy just turned 5! Look at those blues eye, just like mom's!

I was still in terrible pain and was easily fatigued.
All I wanted to do was get in the bed and wait for this to stop. It's when you start getting up and forcing yourself to do more that people
assume that you're doing better.
The more you do, the less people ask how you are.
The less people ask how you are the more you force yourself to do.

As I began to force myself to do more I began to have more interactions with people who either didn't know I was sick or knew I was sick but thought I was better because I was out in the real world.
They often ask the polite "How are you?" when you run into them.
Here begins the dilemma.
Do I answer with the expected "Fine, how are you?" or do I answer honestly?
The truth is that I'm not fine.
I have a debilitating chronic illness and I feel terrible.
If I do that then I have to explain that I am not contagious. You see where this is going, right? Awkward pause.
They usually don't really want to hear about it and I usually don't want to have to explain. It's bad enough to have an invisible illness but mine is one that no one has ever heard of.
So sometimes I explain, sometimes I don't.

This brings me to the last issue I have the energy to cover.
How does my invisible illness affect my kids?
Before TM, I was a super involved mom.
I drove my kids to and from school, attended all of their sporting events, took them to do fun stuff on weekends, traveled periodically,
 and all of the other stuff moms do.
After TM that all changed and it makes me feel incredibly sad and guilty. I've explained my illness to my kids and they say they understand but sometimes they get sad and frustrated too.

So to close I'm going to ask my kids a few questions about how they feel about my invisible illness.

 Betsy-"How do you feel me being sick?"

Nancy(5)- I'm tired of you being sick for so long. 
McLean(10)-Sad.
Eleanor(13)- I don't like having to figure out ways to work around things so that it doesn't cause you to feel worse. 

Betsy-Is it hard to explain to people what is wrong with me?
Eleanor(13)-It's hard to explain it to my friends because you don't always look sick. 
Mac(10)- Yes, because it's so complicated and it's such a weird disease.

It is basically "wait and see" where I am at now.
Thank you for taking the time to read about my Invisible Illness.
Please feel free to ask any questions in the comment section!

Betsy Allison Tant

*To learn more about Transverse Myelitis

http://www.ninds.nih.gov/disorders/transversemyelitis/detail_transversemyelitis.htm



Thank you for sharing your story, Betsy.
I appreciate your friendship so much!

I will be back here tomorrow sharing my story. 
 J will sharing his thoughts on being the spouse 
of someone with Invisible/Chronic Illness 
and how life has changed for us in the past few years.
He is a little nervous about his first writing gig!

And remember how much your comments are appreciated!
Feel free to ask Betsy any questions in the comment section :))
xo, 
misha

17 comments:

  1. i'm going to say what i have learned from a young age ... find close friends & family who wish to hear how you really feel. but on a every day basics i'm afraid that most folks really don't wish to hear the truth of how you feel. so i usually just say I'm fine, thanks. which makes me sad ... because i really wish people would be honest & tell you like it is. so you can be there for them & them for you.

    i can only imagine growing through life & remembering how it use to be & now being unable to do what you wish or want to do. be there for your kids. i pray that they will understand. but i know it is tough for you & them as well.

    thank you for sharing your story. such a big learning experience for me & so many others. big hugs!! (:

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  2. you're right - most people have never heard of this disease. at least some of the others have been featured on ads for drugs and treatments. and the fact that your own body turned on itself due to a virus, people must take a step back about the presumed contagiousness. i can only imagine how you are still trying to adjust to your new existence - for you, your husband and your kids. thank you for sharing your story. it cannot be easy.

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  3. I'm typing this and crying, Betsy. I hate that you're going through this and that it causes so much pain, physical and emotional. I don't even know you IRL, but I feel like I do know you via the Internet. I hope that your post teaches people compassion and drives home the point that not all illnesses are visible. I send thoughts out to the universe every day to let you have some healing and peace.

    ReplyDelete
  4. Betsy,
    It is great to meet you. I am happy you are sharing your story with us and happy you are connected with Misha. Her genuine kindness and understanding is stellar.

    I can't imagine your pain, what you are going through. I for one appreciate it when someone answers the question, "how are you" with accuracy. You are right, not everyone wants to hear, but some do. . . so I encourage you to be perceptive to those that do.

    It helps us to tell our truth to others.

    I haven't experienced your kind of devastating "Invisable and isolation" although at a very young age I experienced a tremendous loss. The grief was horrendous and in time, . . . "no one wanted to hear about what I was experiencing." It didn't take long before I began to not answer the question, "how are you" and instead it was easier to say "fine" which contributed to more Isolation for me. I encourage you to continue to talk about what has happened to you, just like you have in this piece.

    I am proud of your courage as you face this daunting diagnosis . . . . I hope people read this and come forth to let you know they have done so, just as Elzabeth and Theresa did before me.

    Support from others is paramount when we feel alone in our experience. I hope you continue to speak out and "tell others" what you are going through . . . there are those who will listen and support.
    Love,
    Lynne

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  5. I came here via your sister's blog, Betsy. I'm so sorry you are having to deal with this. I went to one of the links to learn more about TM and it is truly an awful disease.
    In the midst of all this pain and limitation, I hope you can somehow experience a peace and comfort and joy that is beyond understanding. How I would love to learn that you are better again and make a full recovery!

    Thank you for sharing your story. Grace and peace to you and your family...

    ReplyDelete
  6. Maybe instead of saying "fine" to people or going into great detail you can just say you are getting by or that today is one of your good days and you could get out and about. That gives the the reminder that you have a disease still without going into too much detail.

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  7. Misha, this is so wonderful, for a lack of a better word, that you are making us aware of these diseases that attack so many people. When my daughter was diagnosed with MS a few years ago, I didn't know anything about it or just how many people it affects. I even found out her piano teacher, she had when she was in school, has MS. My daughter got MS in her twenties, pretty young for it, but we think it was exascerbated by a shot if steroids she had gotten at the hospital when she was sick. She looks perfectly healthy, but there are days her legs won't work and she tires easily. She has two little boys four and three and tries so hard to be active in their lives although I think it does take a toll on her at times. This has become quite lengthy, but I hope you continue this and have others who are going through these invisible diseases to tell us what they go through and how they deal with it. I am interested in reading your husband's blog. He must be a very special guy as is my daughter's husband who has stood by her side through all the tests, tears, pain and uncertainty. God bless you.

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  8. Thank you for sharing your story. I hope that you find with time your symptoms diminish or you find a treatment that gives you much relief, and you are able to do all the things you want to do again with your life and for your children.

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  9. I am so so sorry you are in so much pain Betsy, Misha and all who have shared here. You are such brave warriors.

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  10. Thank you so much Misha for offering such a warm, welcoming place for patients and their families to get together and talk and learn.

    Love to you for all you do and for who you are,

    Katie (Betsy's big sis)

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  11. Betsy,

    I can honestly say I've never heard of TM before and I'm so thankful to you for sharing your story so I can educate myself about it!

    It's funny you should mention Guillain Barre--When I first got sick with Lyme, they thought I had GB as well and treated me as such (much later, they took that diagnosis away).

    You are such a brave and courageous woman! I know it doesn't feel like that because you're just doing what needs to be done to take care of your family, but it's so TRUE!

    Have you tried looking into holistic pain management? Massage, acupuncture, etc?

    Lots of love and healing energies on their way to you and your family! :)

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  12. Hi Betsy I found your site by chance it was so sad to read your story and the pain you are going though i have scolliosi twisted spine maybe i may write about how it has affected me.
    i will continue to read the other storys other people have wrote i do have a blog but it is for cards
    Love Margaret from England

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  13. Betsy..I wish I could give you advice on how I am dealing with the pain, but it looks like my situation was different. Yes, I had a cervical lesion and yes, I had become totally paralyzed twice at the age of 16 and 19. I never told you but that was a part of Encephalomyelitis so I couldn't tell you my total story. But you are dealing with this so very well. And because of that, people will perceive you as a fighter, a survivor because you have come this far. I only wish great health in your future. :)

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  14. Betsy,
    Thank you for sharing your story. I did't know much about TM until reading your story. My heart goes out to you and your children. When a family member is sick it affects the entire family. Your children are beautiful and I know you gain strength from them.
    Thanks to Misha for letting others share their stories who cope with invisible diseases.
    Hugs
    Donna

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  15. Dear Betsy,
    Thank you for sharing your story. I hadn't heard of TM before reading about it and about your experience on your sister's blog. It takes a lot of courage to get up when you're not feeling better. It takes courage and guts to keep on going when you don't know if it will ever end. I too live with an invisible chronic illness. I'm not in constant pain, but I do understand how you can be healthy one minute and then you're not. One thing I read by the writer Dr. Rachel Naomi Remen, who lives with Crohn's Disease, is that it is possible to heal even if you are not cured...And I believe this.

    I wish you healing and peace.

    Alison from HMB, CA

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  16. Thank you for sharing your story Betsy. I can not imagine the shock you must have gone through when you went from being healthy to ill so quickly. Your comment about those not always wanting to hear how you really are remind me of dealing with grief. It can be a very lonely time when you feel like everyone has moved on and your still in the same place. I am glad you have Misha to share this with and a good network of friends and family, and of course your kids, they can always help us enjoy the bright spots in our days.

    Hugs
    ~Andrea

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  17. Oh Betsy I am sorry I just found out about Misha's blog and just read your story. You are lucky to find a friend like Misha who you can bounce your frustrations, accomplishments and tears off of we should all have such a caring friend
    I am so sorry you are going through this and I understand most of it as I have been living with Fibro for ten years or more it was diagnosed then, I am positive it has been longer.
    I am so happy you have a husband that understands and tries to do what he can, your kids are honest and I like that.
    I also have a husband and two great adult kids who do there best. It is a little more difficult to farm but so far I am managing. I dread the day which is apparently getting closer that I will not be able to help my husband.
    I have great support but it is very hard for people to understand something they do not see.
    I am so glad I found this I admire your strength and honesty. Take care Hug B

    ReplyDelete

Thank you so much for coming by.
I Love your reading your comments! They make my day :)
Often, putting together a post is all I have *in me*!
I run on very limited energy and some days are better than others for me. I try to reply to all comments but an icky day can prevent me from having good blog manners!
I do hope you understand...

Happy Almost Spring!
xo, misha

1missmisha@gmail.com