Friday, June 23, 2017

Really negative blog post


I fuckin' hate ALS. I fuckin' hate that I have it, that other people have it, and that it exists at all. I wouldn''t wish this disease on my worst enemy. It's true. If I were to be confronted with the most evil person in the world, and I got to pick how they would come to their demise, I would not choose ALS. I hate it that much. It is stealing my time. It is stealing my independence. It is stealing my ability to be a productive member of society. I fuckin' hate it.

This has been a pretty shitty week (I warned you about the cursing). ALS, allergic reaction to something (maybe a med, maybe not), hives, excruciating heartburn, not being able to scratch my own itch, my voice changing more, eating like a slob when I try to do it on my own, limiting my eating because it is giving me heartburn and because I am eating like a slob, giving in to having Adam feeding me, sleeping a lot more because of all the fuckin' Benadryl I have been taking, an ER trip, two trips to the doctor, one emergency call to some friends just so I can cry, AND the dreadful consult with the surgeon to discuss my upcoming feeding tube (which turned out to be not so dreadful but did make me sad).

Did I mention I fuckin' hate ALS?

AND there is this: Two people I know said things to me in the past few weeks that have really hurt my feelings. Don''t worry - it's not any of you. :) I am sure that they didn't mean it. I am POSITIVE they didn't mean it. And maybe I am ultra sensitive because, you know I have ALS and 50% of my time I am on the verge of tears. But the words. They were said. And now I have to decide if I want to tell my friends "hey not a cool thing to say to a person with a terminal illness" or I just want to let it go. I think people don't know what to say...

There are days when I feel like I can handle the big stuff - like ALS - and it is the little stuff that gets me all pissy and cranky. This week was like that. ALS okay. Heartburn throws me over the edge. Having an ostomy - okay. Having hives all over my body. I want to throw myself over a cliff. Knowing that a bunch of men are sitting around in a secret meeting making decisions about Healthcare reform without the input of the representatives that I voted for - that makes me sick to my stomach. I think many people are like that. It's the straw that gets you in the end.

Talking about my ostomy...June 22nd was my one year anniversary with "Consuela". It was my one year Consuela-versary. We had a little party, she wore a little hat...No, not really. REALLY, she has served me well and I thank G-d every day that I made the decision to have my colon removed and eliminate UC from my life.

Okay. I must admit that this week was not all bad. I did go to a fancy breakfast to support my friend Stephanie as she was honored with a Women In Business award from the Princeton Chamber of Commerce. I am so proud of her and was touched as she chose Adam and I to be her guests.

As I was getting in the van yesterday two baby birds were learning how to fly, and one got so tired it landed on my wheelchair. It just sat there, gathering up enough energy to take off again. We both froze - the bird and I. Finally it took off.

Adam and I took a jaunt around the neighborhood and got really close to a deer. It was a young buck. He was so still that at first I thought he was a lawn ornament. He wasn't scared; kind of looked at us and trotted away.

My cousins Alice, and Bonnie and their families are walking in an ALS walk on Saturday in my honor. They are going to be wearing cool t-shirts and carrying a big, blown up picture of us. I love them all so much.

So here it is, Friday. The last day of a pretty crappy week, that had a few good things mixed in. I'll pray this weekend that the meds, shots, home remedies will make me more comfortable, that they will find a cure for ALS, and that the upcoming days days will be filled with more good than bad.

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