Tubie or not Tubie

Tubie or not Tubie

A “present” for me?  — May 30, 2016

A “present” for me? 

No. It’s not my birthday, or anniversary. And IT IS Memorial Day. And I pay tribute and will be forever grateful to all of the men and women who made the ultimate sacrifice to protect us and our beautiful country. And to their families, my heart goes out to you today. 

But today…I received the gift of the PRESENT!! I feel very alert today- I am in the here and now, in the present and it feels amazing!! This is the time of the day I get really tired. I am a tired, but still feel alert enough to type this!! Woohoo!!!

Have I told you lately? Scleroderma really sucks? It is a daily question of “what the hell challenge will you throw at me today” and ” will you allow me the energy to deal with it?” Typically the answers respectively are “whatever the “f” I want to” and “a resounding hell no!!!”. Over time, those of us with scleroderma get used to it. But sometimes, it would be nice to get a freaking break. This is where I would classify the past two weeks; tucked not so neatly away in the “please give me a f’n break drawer”. Trust me. It would not be lonely there. That damn drawer is packed so full it could explode at any minute! 

As you start this week, remember to live life in the PRESENT! Enjoy the gift you are given. I know I am. 

Woohoo! My life is a blog! Love and hugs to all! ❤️

Handicap Parking Only — August 24, 2015

Handicap Parking Only

disability

I have a handicap plate. I use handicap parking when I need to, on bad days. Otherwise, I just park wherever I can find a spot. I figure, if I am having an ok day, save that spot for someone that needs it more. This blog will go hand in hand with a future blog called “You don’t look sick”.

So, I pull into Walmart’s insane parking lot. There is not any point in the day or night that this parking lot is not a three ring circus with clowns everywhere. I just need milk and…I really am not feeling well. I park in a handicap spot close to the entrance. As I get out of my car, the elderly gentleman next to me glares at me as if to say “You aren’t handicap!” Why does this bother me so much? Why do I feel like I need to justify my medical condition to this person. I actually ordered a decal for my back window that read -” I do have a right to park here. I have Scleroderma. Never heard of it? Neither had I. Look it up.” But even then, why do I need to explain? I have often thought to myself that I should have a stock answer for when someone says something. But usually, there are no words, just an opinionated stare of disgust and disapproval.

One time while I was still working, I was riding the elevator in the parking garage to the 2nd floor to my car. A very overweight man got on the elevator with me and when I pushed the button for the 2nd floor, he told me that I should be walking up the stairs not riding the elevator. I was floored that he had the cahones to say that to me. I very curtly replied, well, I have pulmonary fibrosis so the stairs are hard on my lungs. But really I wanted to say that PLUS F*@# YOU! I have learned to have a thicker skin (excuse the pun – you know…scleroderma…thick skin) and to use humor to deflect these type of rude people but I have to admit…it still gets to me.

I thought I would blog about this to remind people that you never know what illness or struggle someone is fighting based on their looks. I look “healthy”, maybe even stunning some would say. haha! just kidding! By looking at me, you can’t see my hardening lungs, the mass in my brain, my narrowing blood vessels, the pain that radiates through my body every minute of every day, my paralyzed stomach attached to my feeding tube and many other things.

So, please, the next time you see someone park in a handicap spot, or use a scooter chair to shop, don’t pass judgement on them. You never know what they are battling. And by the grace of God, be thankful that you are not in their situation.

Wow! Today was deep! I had to go there! Sorry! But on the other hand, I am open to things I can say if confronted. I need a real zinger! Hit me up with some good ones! Thanks – I have faith in you guys!!

Woohoo! My life is a blog!

If life gives you a lemon… — August 20, 2015

If life gives you a lemon…

 Call an attorney! 

In honor of National Lemonade Day (who makes this shit up?), I have finally decided to contact a lemon law attorney for my car. It’s sad really because I just want my car to be fixed…or for them to give me a brand spanking new one that won’t shred my tires like confetti as I drive. Is this too much to ask? 

If they think that telling me that they haven’t found a problem and that it is ok would fly with me…they clearly don’t know how much I enjoy playing the consumer advocate for myself…and frankly whoever else would ask. I hate when people are taken advantage of… Or treated like idiots. In this case, I feel like they are treating me like a dumb woman that doesn’t know anything about cars, much less that it ISN’T just a coincidence that the same passenger rear tire keep imploding! Now come on! 

As much as I do enjoy advocating for myself, I have also taken the liberty of contacting the local news consumer advocate for help. I’m thinking between the lawyer and the consumer advocate and my incessant bitching, this just may get resolved.

However, I picked up my car from the 2nd dealership that has attempted to repair it and dropped it off to the 3rd and hopefully final dealership. Ironically, within five minutes of picking up my car to drop it off at the next dealership, the air pressure light came on. Seriously?! Yup! There definetly is a freaking problem! I have a good feeling about this new place. Am I an eternal optimist or what?!

In the meantime, as a wait for THE CALL, I am trying not to get too stressed out. Stress is an absolute enemy to all but especially those with autoimmune diseases. This stupid situation could set off a flare up that could land me back in the hospital if I not careful. So. I am trying to stay as calm as I can and even enjoyed a cold Golden Monkey last night…that helps to keep things in perspective and also…put me to bed by 9:30. I am by no means a drinker. Can’t hang with the big dogs anymore! 

But, I think for today, I will skip the beer and pour myself a tall glass of ice cold lemonade and say Cheers to VW and Happy National “Lemon”aide Day! Salute!

Woohoo! My life is a blog!

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