Tuesday, January 5, 2016


(Don't miss other blog posts! Click "BLOG" in the header above!)

Sunday was mostly normal.

I dyed my friend's hair pink and purple.

We all had dinner, laughed until six.

Rick and I went to bed at 8pm.

I woke up soon thereafter coughing so hard I couldn't breathe. Over and over and over. I felt like I needed oxygen and I was starting to have a panic attack.

Rick ran out that Sunday night to a 24-hour drug store to find anything to help. He came home to my crying incoherent gibberish.

Every joint and muscle hurt, undoubtedly from doing what to others would be normal...standing, bending, moving all day. But spend the majority of three years lying in bed, taking this medication and that medication and you lose muscle tone and strength. Some people, like me, lose their appetite. Some people, not like me, lose a ton of weight. I've lost. Gained. Lost. Gained more.

Humiliation is a side effect of long-term illness no one talks about much. Being fine one hour and wanting to die the next -- no one has time for that. I know. I've lost friends who just "couldn't deal" with the crazy fun house of mirrors and yo-yos that is Lyme Disease.

The disease so many doctors and nearly ALL insurance companies says does not exist, even when given concrete medical proof from advanced medical tests. Yeah, that one. The disease that turns a common cold into "do we need to go to the hospital or not."

Things were worse throughout the night and Rick stayed home late enough to get Zack to school. That alone told me he was scared, because he gets up at 3am. At 3am I was screaming in pain. I'm pretty sure that freaked my stoic husband out.

When he came home, he said my two-doctor GP office couldn't see me for at least two days. Rick decided to take me to an Urgent Care facility instead of the ER. The ER would have cost a cheap copay. It's also a lousy hospital, with one doctor on call in the ER. Rick called our insurance about Urgent Care. I needed a referral, which would take a few days. Unless I wanted to drive 45 minutes to the first "approved" one.

You see a pattern here? My insurance company does not believe I am sick with Lyme, regardless of proof by top doctors in the country, if not the world, yet can't say what I have. My insurance company prefers I sit seven hours in the ER (the last amount of time I spent waiting when I went) when I waited only ten minutes at Urgent Care three miles away and chose to pay out of pocket rather than wait days for a referral.

I barely remember the visit. I was weak, half asleep yet in deep pain, but I do
remember a nurse asking kindly,

"Does she need a wheelchair?"

In my mind, I rebelled. I've had to use a wheelchair once, but I didn't want to do it again. I don't like staggering, being unable to drive at times, but I'm afraid if I got in a wheelchair...

I'd never get out.

Zack's 13th birthday is the 10th. I had big plans for his Friday school snack and his Saturday party. Zack has no idea the extra things I wanted to surprise his party with. But I do.  I have one child, one 13th birthday.

I am absolutely going to do this. A friend has picked up Zack for school all week thus far. I get about an hour or two after sleeping like the dead to get things done. Maybe a wheelchair would be good, keep me from falling. I don't know. I've fought it. I was getting better. I AM getting better. But I push too hard, and maybe, just maybe, a wheelchair would keep me from hurting myself so much and setting my progress back.

Do they come in pink?


  1. Sweet Lori... I can't even pretend to imagine all you go through to get through a day...and if a wheelchair would give you some mobility, conserve some energy, and especially keep you from falling? then maybe it's time to consider... not forever, but until you don't need it. And I am sure they come in pink! Or you could could deck it out that way! Much love,

  2. If I lived near you I would make you the pinkest sparkliest chair imaginable! I'm surprised my M-I-L has not asked us to spruce hers up.

  3. Oh, Lori. My heart goes out to you. Hugs, my friend.

  4. You are a woman of remarkable spirit, strength, creativity, and mad hair painting skills. My heart aches for you when you are feeling so low, and sings when we giggle like school girls. A neighbor of mine told me not too long ago that I should be ashamed of the fact that I wasn't working, because I didn't look sick. I replied that just because my illness wasn't on the "Top 10" of feel-sorry-for-someone diseases, that didn't mean it wasn't absolutely real and incapacitating. My insurance won't pay for a medication that would very possibly reduce my symptoms to the point that I could have at least part-time employment. Instead I'm forced to fight the system for disability pay. It just doesn't make sense. So, we support one another and do out best. It's going to be a great party, I just know it.

  5. I don't worry that you wouldn't get out of the wheelchair. It's like medication. You take it til you don't need it any more. Plus, I can imagine yours would get bejeweled and be a wonderful accessory while you had it. I follow someone on FB called The Girl with the Purple Cane who advocates for inclusive fashion and fashionable assistive devices. This post reminded me of that. I hope you get to do all the special things you want for Zach's birthday and feel well enough to enjoy them. I know you do everything you can to make those things happen and I send you good vibes and strength to keep on doing it!

  6. You, of all people, would get back out of a wheelchair. I'm sitting in a borrowed one right now, with the extra cushion it came with from a friend's house. I normally hop behind a walker, but some days, I am just too worn out and if I want to get something done, a wheelchair is helpful. Otherwise, I only use the wheelchair away from the house.
    Your strong desire to get things done without wearing yourself out worse could be helped with a wheelchair -- and yes, they do come in hot pink, and you can definitely bling it out! I'd like to slap insurance companies upside the head for their willful ignorance (and a few doctors, too).
    May you be able to do what is most important to you -- and may there be local friends who help you make those dreams come true.

  7. I felt the same about the humiliation (I gain weight!!) that results from long term hidden disability. Even my husband occasionally quips '...then you could get a job' when he knows I miss my job and fought to keep my nursing license from changing to retired status. They will never get it no matter how hard they try. Be we have to respect the effort! I also have fought against going out in a wheelchair. My mom used to say we'd just use one so I could do X or y but I'd rather just skip whatever it was. Which was silly! Use it if you must and only when you must and you'll be fine. Your kid loves you for you not for how awesome a party is so only do what you can without falling in the middle or it or waking in the night feeling like you are dying. Best wishes.

  8. Oh honey, use what you need when you need it. That's my motto. You have the fight to not stay in it. But we all need a helping hand now and then.
    I use a walker. I have friends with the simalar balance issue
    Ues I have, but they won't use one. Some will use a cane, that doesn't help much when your head is spinning, so they fall a lot. They end up with concussions, broken bones. ..ect. because walkers are for old people. Well my walker is bright red and looks like it should be on a race track, it has big wheels and I can jump a curb! I'm always having people stop and ask me about it. Yep, I'm the envy of the walker crowd. But do I use it if I'm having a good day? No. But I'm not afraid of it. Some days I do need a wheelchair when I'm very bad, but that's always been at the hospital, on those days, I've thanked the stars for them. My point. Don't be afraid. If there is a tool that will make it so you can spend more time with your family, use it and be happy. Ad happy birthday to Zach. I know it will be special no matter what.

  9. I cannot relate, personally, to what you are going through. I do, however, have the utmost empathy. I have a very good friend, for 30 years now, who suffers from the worst type of multiple sclerosis. It took nearly 10 years to diagnose. It has been about 18 years now that I have watched her try to deal with her constant regressions. Loss of eyesight, mobility, clarity with thinking and forming words, sleeping for 18 hours a day, daily injections....the list goes on. She refuses to use a wheel chair. In the past 11 months, she has tripped and fallen...and cracked her skull twice. Now, she has to wear a helmet when she is outside, as one more crack could be the final demise. If she used that wheel chair, she would not have fallen, not have suffered through the massive concussions, etc. please use the wheel chair as needed! I equate them to hearing aides, or eyeglasses....an aid to enjoy life to the fullest the best way that we can! Peace and prayers to you!!

  10. You know that if someone can feel your pain I am it. After the car accident everything has gone wrong or at least much less than right. The bruise inside the left arm is not apparently a problem since it has not "internally" healed as the surface is as bloody as the first day. But I keep and trying to do things and like you I refuse to give in to the either the pain or the frustration. So, added to all the other things I told Mary last night that I think than in the ancient Japanese tradition, maybe it is time to take me to the hight mountain :)

    Did Zack get his card? check your email otherwise. The first one was sent back because I could not remember if he had his own email so I sent it to Zach at your email and of course it came back. So yesterday I sent the other to your email please let him know in case he wonders what was I talking about but do you remember that when he was a little thing you sent me a video of him dancing but the refrigerator? I have kept it all these days and when I was looking for something on the old laptop I found it; it made me both smiled and cried a bit, how fast the years go by and how many memories we have woven into this friendship that could never be repeated or forgotten.

    Feel well, you are in my heart and tell my godson that I love him dearly and that I wish him the best of everything with much love, to you as well as he. His Mimi A.
    send him a big hug and please give him that hug from me.

    I love you,


  11. You know, we could get some of that glittery tape like we used to use in marching band on the flags and rifles and tape up a wheelchair in hot pink and any other color that makes your heart sing...


Thanks for taking the time to read and comment!