So, it's been a couple of weeks since I last posted.
I used to post at least every time I went into infusions, and the last couple times I got infused, actually stayed busy! My nurse is awesome, and introduced me to a wonderful woman who has *one* of my diseases, and we were able to talk about all of the "joys" of being chronically ill.
It's nice to talk to someone that knows what you are going through. Maybe not exactly, but pretty close!
We each have our own way of dealing with the downside. I, for one, use multiple methods to cope, mainly because I haven't found the perfect answer. I probably never will.
I've had a great couple of weeks on the "mental" front, which tend to make the "physical" part a little easier.
Stiff Person Syndrome has an AWFUL way of attacking you when you are "overly emotional". So, any kind of anxiety ridden task, or situation can PHYSICALLY hurt me.
That SUCKS when you are as passionate of a person as I am. I am the type of personality, that when I am happy, every knows. I spread love, call people, go above and beyond to make other people around me feel the same way. But when I am upset, sadly, everyone knows that as well. It gets magnified by the pain in my body that manifests from the trigger of being upset! It's a vicious cycle.
I am learning more and more about this horrible disease, mainly from Facebook support groups. I was more than surprised, and incredibly happy to find a couple of groups, one open, and one closed, full of people like me. *When I say "FULL", I mean a little over 100 people, from AROUND THE GLOBE, some of whom are caregivers for people with SPS. It's a place I can go, albeit virtually, where I can be surrounded by people that know what I'm dealing with. We all have different treatments, ways of dealing with things, different levels of the disease, but anyone can post a question, comment, or just vent, only to be answered by people that have been there, and have REAL advice. It's kind of cool that "Google Translate" exists, so people from all over the world can speak to each other.
Please don't get me wrong, I have a strong support network at home, but when it comes down to the details of THIS illness, when I talk to someone in my life about it, it's a one sided conversation. It's usually just me, telling them what's happening. I feel like a broken record sometimes. Once you realize you have to explain your disease to a lot of different people, you end up with a VERY efficient paragraph that includes all of the pertinent information, hopefully without leaving a ton of room for questions, and you try not to make it sound too bad, because you HATE the looks of pity when you are finished.
But, when I am able to answer someone else's question about the side effects of a treatment, or random things that happen after and infusion, or have someone KNOW what aseptic meningitis is, and compare stories with me...it's kind of nice.
I compare taking advice from "non-sick" people to the "one friend" (we all have them) that has NO KIDS, but just LOVES giving out parenting advice.
To drive my point home, my OWN MOTHER keeps giving me advice, because she doesn't understand the complexities. Things like "Well, it's probably just stress, those doctors don't know what they are talking about." and "Have you been tested for Lyme's?, I hear that has the same symptoms as what you are experiencing..."
Yes, I have been tested. FOR EVERYTHING. When I finally get frustrated enough, I go into the "anti-GAD, GABA, and CSF" findings, and usually people stop trying to"Sidewalk Diagnose" me. Because they have no idea what these tests even are, they tend to stop and take my word for it.
I understand that your sister's friend's uncle's girlfriend's father-inlaw's brother's mother had SOME of the same symptoms, but NO, I don't have MS, LUPUS, LYME'S, STRESS...etc. Thank you for your input.
And if someone tells me their "FRIEND" has Celiac Disease, and thinks I have a WHEAT issue ONE MORE TIME, I'm going to explode!
Although frustrating, I HONESTLY understand where most people are coming from. They just want to help. They have no malicious intent in the advice they are trying to give you. They want to know, so they can figure out a way to help. But there is nothing anyone can do to change my diagnosis. Believe me, I tried.
I'm sorry, but 99% of everyday people just don't understand. You CAN'T understand. I PRAY you never will. I very honestly wouldn't wish this kind of pain and torture on even my greatest enemy. (well, maybe one or two of them...)
So, due to these groups and the wonderful people that run them, I am able to gather REAL information, instead of speculative statements from doctors that had to "Google" SPS just like any other layperson!
REAL life stories. Some good, most bad. The uninsured and underinsured are the worst stories.
Then, there are the pictures, and the videos. I'm thankful for them, but won't let myself watch any more of them. My spasms can be pretty bad, but I still try to hide them from my husband, and my kids, and wathcing some of the videos on the page let me know that, 1) I am not alone, and 2) It's going to get worse.
The pictures and videos on the closed SPS group were scary, but, not to sound odd or anything, I FINALLY felt better after watching some of them. I had that "Ahhh..." moment. So, THAT'S why my foot does that, or, THAT'S why I am hunched completely over, or have to stand up straight, when I attempt to walk. I was able to inderstand my OWN disease that much better.
Usually, it's the caregivers that give out the most detailed information, because it isn't as stressful for them to type the symptoms they see. When WE describe them, we have to re-live the experience with every sentence. And, we HATE pity. Especially face-to-face pity. The worst is the friend of a friend, who heard it from a friend, that runs into me out in public. I'm used to stares. They don't bother me. But, people in general don't like to see someone, as young as I am, in a wheelchair or walker. So, as they approach, I get the "face". The turned down lips, the slightly cocked head, and the lifted up inner eyebrows, and before a word is even spoken, I can tell they feel SO sorry for me. UGH. So, usually, I just smile bigger, bring up a happy subject, crack a joke, *The "That's how I ROLL" joke works 90% of the time* ANYTHING to make "the face" go away. (The only thing worse than "the face", is the "I can barely speak, teared up, lean-over-my-wheelchair, half-hug")
It's easier to deal with the person who DOESN'T know. They are my favorite, especially the people that don't realize how silly they sound when they say, "What happened to you?" The reason it's my favorite? I can answer with one sentence..."It's a random neurological thing..." Most people will just let me leave it at that, because they were expecting an easier answer, like "car accident" or "back surgery". They don't want the details.
So, this post was spawned by a quick stop to the High's on Muddy Creek and Galesville Road. My husband had a gig that night, so, I had to skip my afternoon meds in order to go pick up my youngest. If I know I need to drive anywhere, I don't take any of my muscle relaxers, so, I have to be VERY efficient in grabbing the kids, and making sure the ride home is "happy", so my stress level doesn't go up, and I don't get caught in a spasm. Fun, right?
So, I picked her up at her daycare provider. I love the drive into South AA county, the daycare is run out of a home, and WOW, does she love my daughter! My husband and I drive 25 minutes just to bring her to this ONE WOMAN, because of the love, compassion, and discipline she shows our kids.
So, in a great mood, My little one was thirsty. No biggie! I wasn't going to make her wait the 25 minutes to get home! There is only ONE gas station on the route I take, and since I used to live in Galesville, I know most of the employees. So, I struggle to get Mello out of her carseat, and I see a large man in an Excursion driving around the parking lot in circles...thru the pumps, around the few spots available, and back thru the pumps again.
So I did what ANY mother would do. I held my daughter as close as I could, grabbed my cane, and locked my doors 4 times! (Because sometimes, we need to hear the "double-beep" more than once to feel comfortable that the car is locked!)
Anyway, as I hobbled into the store, Mello wanted DOWN, because she wanted to pick her own snack, while I grabbed a chocolate milk. I didn't care WHAT she got. All I needed was a guarantee that she would be entertained on the way home, and NOT scream for any reason. So, she wanted donuts for dinner, and paired with a chocolate milk, I figured it was better to have a happy child in the car, due to my condition, and I would just have to pump her full of healthy food when we got home, and I would deal with the sugar crash later.
As I checked out, Mello happy with her "loot", I hobbled back to the car. That's where it got weird. I dropped the bag on the front seat, and let her crawl into her own carseat. (I can't lift her anymore)
She got distracted by some toy on the floor, and as she went to get it, the "Excursion guy" pulled in front of my Subaru, threw it in park, and got out of his car.
Then, HE LEFT IT THERE. Parked me in. He HAD to have been out in the parking lot for a good 10 minutes while we were in the store...but WAITED until I was going to leave to park my car in.
Confused, and with my blood pressure climbing, I snapped Mello in her carseat, handed her a donut, and waited for BIG BOY to come out of the store. He didn't.
I was in a handicapped spot. I had a handicapped TAG. I was using my cane, (nice to be out of the wheelchair!)
So, I noticed he had a RED handicapped tag in his BIG truck, and thought maybe he just needed to be close to the door, because of his disability. But, even though there is only one handicapped spot in the parking lot, there were plenty of closer places he could have put that thing.
So, I made sure my car was locked up, daughter was happy, and went into the store to ask him to move his truck.
He was READING A PAPER at the paper stand. UGH! So, as I approached him, he had a smirk on his face, like he was looking forward to this confrontation. I obliged. Not my first rodeo either, pal.
"Excuse me, sir, could you move your truck? I need to get my little girl home."
"As soon as you learn not to park in MY spot" -he says...
"I'm sorry?"
"You're parked in a handicapped spot."
"I know that. I'm handicapped. I'm LEGALLY parked in that spot."
and then he says...
"You know DAMN WELL that's not your tag! You're just one of those mothers that wants to park closer, because you got kids to wrangle. People like you should be towed just for shits and giggles."
OKAY, I agreed with him.
The worst thing in the world, is when you finally have a good enough day to get out of the house, (after MONTHS of not being able to drive myself) and then some PERSON is parked in a spot you need, because of how impossible it is to walk long distances. I've parked in my fair share of nasty women that needed to just grab a Starbucks really quick, and used a handicapped spot to do it!
I smiled at him.
I pulled out my driver's license, and disability card that came with my tag, and handed them to him.
Then, I leaned in an whispered, "If you don't move your truck, I will call the police, and let them know how SCARED me and my baby were...Just imagine, PAL, when a cop shows up, and my daughter and I are crying because some nasty old man was keeping us here against our will."
As he fumbled for his keys, I added.."Let me tell you something. If I didn't HAVE to have a close spot, I wouldn't park in one. I don't WANT to be sick, but I am. Just because I am young, doesn't give you the right to choose who IS and isn't disabled. I HATE THAT TAG. Oh, and YOU, sir, were lucky enough to live a long life before disability, I was NOT."
He was still an asshole, but he moved his truck. I was shaken as I put Mello into her carseat, but at least he moved.
As for my SPS, I was able to drive about a mile before the spasm got my left leg. VERY grateful it wasn't my right leg. I used my husband's breathing trick to get my blood pressure down, and made jokes with my daughter until I could get the spasm under control.
Gonna be a while before I am able to confront someone and drive again, but I REALLY want to be okay enough to drive!!!
I hate being driven everywhere, but am working on moving up to a baclofen pump, and completely OFF of pain medication, unless I really need it, so I know that my brain is working properly!
My point for this WHOLE long ramble?
Don't judge a book by it's cover, or a person based on what you THINK is wrong with them...
And PLEASE, if you know someone is dealing with an illness, make sure they ACTUALLY want your opinion before you give it to them!
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