Trach Trauma

ARGH. I love the new, bigger trach, but oh my STARS is it horrible to take out and clean every other day. I can pop it out no problem, which amazes me, because before I couldn't even THINK about it...or look at it when it was out...just freaked me out having this hole in my neck! Now with the surgery it looks kind of like an inny belly button. WAY inny. : )

Anywho. Coming out is no big deal. Putting it back in however, OW. Holy Pain in the Neck Batman! Ar ar. It's like giving birth backwards. Or trying to shove a large lemon up one nostril. Or...well, you get the idea. I clean the outside twice a day, but have to take it out to get the inside really clean. Yikes. I just can't put it back in. I tried the first couple of times, but I literally can't push hard enough to get it in. Plus, it's really hard to force yourself to cause bodily harm to yourself...it's like your brain fights against your hand trying to shove it in. My hand and arm were just shaking with the force I was exerting to get it in, yet it wasn't going. So thank God Doug isn't squeamish, cuz he's the one to put it back in.

I have felt like crap the last couple of days...double vision, really tired, a bit weak. Jacob has a little cold, so I wonder if I'm fighting it off. Germs make my antibodies get stronger (like anyone else) but then I get MG symptoms. Grrr.... Stress makes all my symptoms worse, and dealing with a best friend with terminal cancer doesn't help much. We were going to see her tomorrow, but with Jacob having a cold, I don't want to bring ANYTHING to her to get her sick. We'll just have to wait til he's healhty again.

Anywho...that's all for now.

Good friends and bad interpretations

My hubby and I had the best time last night. Since my recent trach surgery, I have been breathing so much better. We went to see friends of ours...they have twins 6 weeks older than Jacob, and a 4 year old son. We always just pick up pizza on the way so no one has to cook, an dit's fantastic. They are true friends. If they say they'll pray, they will. We have so much fun with them, yet they are the most amazing Christian couple. They are terrific parents...terrific friends. We are so blessed to have them in our lives. We met them at a previous church, and we will be friends for life.



While we were there we werew talking about my illness, and my original hospital stay back in 2000. That got me thinking about the first church that abondoned us. Depressing.

This is actually now much later in the day, and I received an e-mail from an elder from the church we just left. I had written them a letter telling them we were leaving and why. I was upset that we had been going there since January, and yet when I had surgery to revise and enlarge my trach, no one called when I got home, no one brought a meal, sent a card, nothing.

Anywho. So this elder wrote a scathing letter back to me about how I can't possibly expect entire congregation to meet every need. (Which is, of course, ridiculous, and I didn't say anything about that.) Because then, "everyone would have to quit their jobs and wait around for a need to meet." Can you say, over-reaching?? She also was kind enough to point out that any time she's heard me talk (which is probably once?) she notices that the first thing I talk about is my diability. Um, yah. Someone stares at the hole in my neck and asks what's up, so I answer. Next time I guess I should quote her and just say I'm not identified by my disability.

There were some other lovely, uplifting (uh, not so much) things she said, but the best was this:

"I sincerely hope you do ponder your expectations as in my humble opinion they are selfish and inappropriately placed."

SELFISH and INAPPROPRIATELY placed. Hmmm....if Christians can't depend on other Christians to help them in a time of need, where do they go???

So, forgive me for thinking only of myself as I was struggling with a neuromuscular disease with no cure (which I am NOT defined by), recovering from surgery and raising a 2 year old without being able to speak because of the ginormous trach in my neck.

I'm upset, I'm angry, but behind all this folks, I'm just sad. I feel so rejected. By the church no less.

OH, and just as an added bonus, my best friend in the world has terminal cancer.
No one ever said life was fair. But they never said it would be so cruel.

Busy, busy, busy

Ya know, I can't believe how much people take on. It's like the busiest, most exhausted person wins! But wins what? Lost relationships? An ulcer? No sleep? I have to admit, I use to be a busy person. My illness slowed me way, way, WAY down. TOO "way down" if you ask me. But it really makes me treasure what's important. I guess if there's one thing I'm thankful for by having a chronic illness is that I try not to take important things for granted. I ask myself.... Will this matter 10 years from now? It may matter an HOUR from now, but does it have ANY lasting value? If something is important enough, you WILL find time for it.

Here's a big shocker, folks, hope you're sitting down. It's not a competition. If you get everything done on your list of 17 things to do today, but had no contact with a true friend, or helped no one, or didn't pass on a kindness to a stranger, then did today really matter? I KNOW I can't be the only person on the planet who genuinely cares about people, and will make time for what's really important. But that's the key. You have to MAKE time. My theory is, if it's important enough, you'll find time for it. You find time to watch your favorite program. You find time to eat dinner. You find time to go shopping. You find time to read a good book. You find time to ______. And I'm still preaching to the choir, because there are many times that I could spend with God, that I choose to do something else...watch TV, read, etc. We just have to prioritize.

Some folks genuinely have busy lives because they ARE taking care of others; a sick friend, an elderly parent, a down-on-their-luck neighbor. And bravo to you. But don't forget that even doing all these "Good Things" you can still be too busy.

In our world of immediate gratification, it is an important lesson to learn to slow down. I have had to by force. But it really has made me step back and see that so many of us are, or were, just like crazy little ants running around and going and going and going.....

So please. Take a minute to stop today. Stop and spend a few minutes in complete silence. Stop and spend a moment in prayer. Stop and drop a card in the mail for a friend, or a shut-in at church. Stop, and ask your pastor what you can do to help.

We area all in this so called life together, and we all need each other, whether you want to admit it or not.

Cheap therapy

Good morning!

Well, my friend Joanna said this is cheap therapy, so here goes. I have no idea who will find this blog or how, but for now, it's my vent. I have myasthenia gravis, a neuro-muscular disease. It's pretty crappy. I've been diagnosed for 8 years now, almost 9. But I've had this disease for about 13 years. I was hospitalized in 2000, and almost died. I have a trach. I also have a fantastic husband and a precious little boy. He (Jacob, my son) is truly a miracle. I didn't think I could get pregnant, but we did, right away, and he is the light of my life. My husband (Doug) is a cross between Davy Crockett, Daniel Boone, and McGuyver. He can do almost anything. I love him with all of my heart. I went into the hospital SIX WEEKS after we got married, and he was there..for better or for worse, in sickness and in health. Amazing in today's self-first, me-me-me society.

I think one of the things I hate the most about this God-awful disease is that is can be so "invisible" to others. I'm SOOOO sick of hearing, "But you look so good!" Except for my trach, I look pretty normal. However, any moment I would have muscle weakness, start slurring my speech, have trouble breathing or swallowing...start choking on my own spit. Lovely, I know. I park in handicapped, especially at the superstores, because by the time I've walked through, I may be so exhausted I can barely make it to the car.

It's so hard taking care of a 2 year old with this disease. He wears me out by noon. It will be a little easier when he gets a little older...but right now it's GO GO GO! My parents are awesome, and come out all the time to help us. They live about 40 miles away, so it's not like it's around the corner either.

So I guess I would encourage you, if you are able, to see if there is someone YOU can help, and dive in.