Invisible

Invisible. Shrouded. Hidden. Veiled. Unseeable.

Sometimes I wish I could wear my illness. Yes, I have a trach, but that could be from cancer, which most people assume is the case. I used to wear an eye patch because of double vision, but prisms in my glasses fixed that.

When I go out of the house, unless I am going to the hospital, I do my hair, put make up on, try to look presentable. Even if I don't feel good. Even if I have to stop 23 times from putting my hair up because my arms give out. Why?

I. Don't. Know.

Pride I suppose? Just because I feel like crap doesn't mean I have to look like crap?

So what would I wear if I could wear my illness? A sign that says, "I'm not drunk I have Myasthenia Gravis, that's why my speech is slurred and I sound like I have marbles in my mouth, and I may walk unevenly."

Another that says, "If I'm riding with you in a vehicle, please accelerate and break gently. Too hard and my head snaps back and forth because my neck muscles are too weak to hold my head up properly."

Probably should have one that says, "I can't breathe because my muscles are severely impaired by neuromuscular weakness, I'm not just out of shape. I also have an unfiltered hole in my neck, so you can imagine the yuck that lives in my lungs."

And, "Please don't make "Arrrr, matey" sounds when I have a patch over one eye. If I’m wearing a patch I have double vision, probably a severe headache from the double vision, and I'm exhausted. Unless I take the lead, I'm probably not in the mood for jokes."

I would have a sign that says, "Don't judge me for parking in handicapped just because I look okay now. When I'm done walking through this store, I may have to stop three times on the way to the parking lot."

And of course a sign that says, "Please don't say, 'But you look so good!' For what? Someone with an invisible illness who struggles every day of their life to choose to live and fight instead of give up and die?"

We are out there. We are someone you know.

We are out there. We are sisters, daughters, wives, mothers, friends, aunts, grandchildren.

And we don't want to be invisible anymore.

Please take the time to be kind to someone today.  You never know the difference you may make in an otherwise very difficult life.

²² But the fruit of the Spirit is love, joy, peace, patience, kindness, goodness, faithfulness, ²³ gentleness, self-control; against such things there is no law.”  Galatians 5:22 ESV

“Judge not, that you be not judged. ² For with the judgment you pronounce you will be judged, and with the measure you use it will be measured to you. ³ Why do you see the speck that is in your brother's eye, but do not notice the log that is in your own eye? ⁴ Or how can you say to your brother, ‘Let me take the speck out of your eye,’ when there is the log in your own eye?” Matthew 7:1-4 ESV

A Spectacle of Glory: A Book Review

What a remarkable book.  What an incredible woman!  Joni Eareckson Tada, for those who are unfamiliar, broke her neck diving into a lake she had dove into hundreds of times growing up.  But the last time, it was different.  She was only 17 years old, broke her neck, and immediately became a quadriplegic. Joni went from being on the cusp of all that life has to offer to the brink of death in one dive.  One action that she had done so many times before.

Now, Joni has been wheelchair bound for about 50 years, and she is my absolute hero.  She has inspired me on so many days when I didn't want to get out of bed. But I think, if Joni, who has to wait for someone to help get her out of bed, to help her use the bathroom and get dressed, and can still sing for joy to the Lord, I certainly can.

From the book on December 10 on page 371: "Christians often try to forget their weakness; God wants us to remember it, to feel it deeply. We want to subdue and free ourselves from weakness; God was us to rest and even rejoice in it!"

Now I can see resting, even though it's very tough to do, but rejoicing because I'm weak? That's a tough one. I used to curse my dependence on my husband and others, but slowly, I've realized that it's only when I'm weak, when I'm dependent on God that I am at my strongest.

Joni helped to teach me that. This is a daily devotional with a Scripture reference, a devotion from Joni, and a prayer.  I would highly recommend this book for anyone with a chronic illness.  It is available now in stores, or on amazon.com and other book vendors.

The prayer from Dec. 10: "Father, you know my heart. Even after all these years of weakness, it never becomes easy to accept. It never feels natural to have someone do for me what I would so much rather do for myself. Even so, I praise You today for every weakness that keeps me leaning on the power of Your Mighty Son, who loves me and gave Himself for me."

Wonderful reminders that God is always with us, and He always loves us.  Great devotional!

The Plan For Now

Well, I'm doing a little better. Wednesday was BAD. I couldn't hold my head up...I had two appointments, and Doug had to take me to the second one, and I had to lean my head against the wall while I talking to the doctor. Nice. He is a very compassionate man, though, and super nice. He's like, do you want to do this later (annual exam). I'm like, no, let's just get it over with. Doug had to help me get dressed and stuff. It was HILARIOUS though...you know how the gowns they give you are always "this much" too short, or don't quite close? Well THIS thing...I wrapped it around Doug after I had it on and there was still room for another person. I was like, DANG....Where did you get this thing?? Omar the Tent-Maker?

Anywho. My neck is doing better after a good day and a half of rest...Jacob started going to my dear friend Shawn's house on Wednesdays, and she took him yesterday also, so I could rest. It made a WORLD of difference! Thank you Auntie Shawn! I couldn't talk very well yesterday though. Ask Joanna how I sound after eating something cold...let's just say I literally carry a card with me that says, "I'm not drunk I have MG." I slur reeeeaaalllly bad when I get weak, or eat something cold, especially when I'm talking a lot (like when Joanna and I get together!) Today I woke up at 5:07 and couldn't get back to sleep, so we'll see what today brings.

Anyway. I digress. The plan right now is to do 3 plasmapheresis treatments in 9 days. So we'll be doing a 280 mile round trip (actually 2 of those will be more like 320 because we bring Jacob to Doug's parents) on Tuesday, Friday and the following Wednesday. If that doesn't snap me out of it, they will probably raise the prednisone. I'm so glad my doc didn't immediately go to that. He knows how I feel about it, and if possible he does what I ask...that's why he's such a good doctor!

So it will be a lot of driving, needles, treatments, weakness, blah blah blah. All that good stuff, but hopefully it will snap me back. They are checking with my insurance about the Rituxan. It works at a cellular level, literally stopping your antibodies from producing. It takes 6-9 months to take full effect, and it's.....(hope you're sitting down).....$15,000 per infusion. The treatment is one infusion a week for 4 weeks. Um, yah. Thank you, Mr. President, I'm sure I won't be getting that.

The neuro. nurse told me I had to remove all stressors from my life. I had to chuckle. I'm like, dude. I'm married and have a 3 year old, not to mention more than one chronic illness. Yah. No stress here. So....I'm asking for prayers once again! Thanks much.