Sweating my Stripes off!

Wow! It’s been so long since I last wrote! It has been hectic.

But I’m back! So…

I’m just going to jump right in here…

I work… I’m fortunate to be able to work. I’m lucky I can leave the house to work. So many people in my position, with these illnesses, are unable to leave the house for work, and many of them are unable to work altogether. Don’t even get me started on the SSDI process! – I’ll get to that later.

So I work… I wake up every morning at 4:30 and I’m at work before 6:00. Granted, it’s only a part time job, but it’s work. And I enjoy it! That’s probably all I could really ask for! But working while dealing with two illnesses still comes with its difficulties; even if I’m physically stronger than many of my friends.

You see… A lot of the time I’m a bit embarrassed about my illnesses. I just started my job back in October, so I haven’t been here for very long. Now, I have some decisions to make: tell everyone (probably one by one) about each illness – in detail; keep it all to myself and try to save up sick hours and work all of the extra shifts in case I need time off to go see a doctor or have a procedure done; or I can wait until a day when I’m sitting at work in so much pain that I need to go home and then try to explain with just enough, but not too much detail. It’s impossible. It’s frustrating. It’s embarrassing. I see the same 2 looks, but never from the same person. Look number one: “okay, so you’re not dying? Then get over it. That doesn’t sound that bad. It sounds made up.”  Look number two: “Your HEART doesn’t work!? You might pass out!? Oh dear god! Go! Go! Get out! Get better!”

As you might have imagined, both of these looks make me feel absolutely insane and usually right afterwards, I want to (or do) cry.

Now, you might be wondering why I would ever feel embarrassed. Well, first of all, I work at a Rec. Center, so the amount of physical activity I can survive is a little low and at times humiliating. Don’t get me wrong, I still work out and try very hard! Second, and yes this really happened, I have blacked out and smack my head on my desk. This hasn’t happened at my current job, but it did happen at my last office job. It was loud, my face turned red, my head turned purple and I got sent home. It was unbearably humiliating! Last… I have mentioned that I almost always feel pain, so I always have a heating pad with me, including at work. The number of questions and comments I get every day is incredible… “not feeling well?” “did you hurt yourself?” “oh… You cold?” All I ever want to respond with is (in order): never, of course, and always. But this would never go over very well, so my response is always along the lines of “oh yeah… Just chilly!”.

So, riddle me this: a girl has a sickness that is not seen, heard or contagious… How can she get a sick day? The answer: by sharing all of the most intimate details of  her life in order to explain the unseen, unheard, and non-viral sickness. What does she risk in doing this? Sometimes nothing. Other times, her pride… Always getting too much sympathy; 20 questions… Explaining what, when, why, how, where and who is not just for 3rd graders anymore!

Please understand, I am so happy that I can work, but man… It’s not easy when you are always tired or sick, or in pain. And everyone has advice, but no one understands.

So why not get disability insurance?

I’ll tell you why… Not only is it ridiculous process, to me, it’s not worth risking my integrity or reputation if I CAN continue to work. I have heard horror stories from my friends about being denied several times, fighting judges who don’t understand because of doctors who don’t seem to care, or just aren’t educated enough to offer an opinion on these illnesses. The last thing I need is a doctor announcing to the government that I’m a crazy whiner!

So that’s how it is. And it’s frustrating, and maddening, and irritating and embarrassing and sometimes confusing. But once again, it’s part of my life… It’s my job, and I love it!

Zebra hugs and love to you all!

My Vibrams

What to write about today? Well… I will be honest that I feel like I barely made it through the week. It’s not even that it was a bad week. It was actually a great week! Things are going really well overall! But this week was quite a symptomatic one for me. I have a shoulder that dislocated 2 months ago, and for the most part, I was able to get it to go back in. Unfortunately, it slid back out, but only partially. It has been stuck and popping non-stop since then. It hasn’t really been killing me until this week. And now it’s just throwing everything out of whack. It has my whole arm, my hand, and even my fingers in pain! And then there’s just the normal pain in my right hand, fingers, arm and shoulder. So… With the stuck shoulder, it seems that my neck is also off kilter. Then there’s the intense nausea, stomach pain and exhaustion. But wait! For a limited time only, my body and brain are throwing in palpitations, chest pain, a high heart rate, muscle spasms and dizziness with black out spells…. All a value of an ER visit, absolutely FREE! That’s right… I hold on to my sense of humor, because otherwise it’s just sad and pathetic. But it’s my life and I still love it! 🙂 

Anywho… Man… This arm… It’s gonna be the end of me! 😛 I recently got a new tattoo on my back… Yes I have tattoos, four in fact. Judge me in 3…2…1…

 

Alright, that’s all we have time for. Anyway…I just got the color on it done, and now it’s starting to itch. Now… The problem that is slightly advantageous with joint hypermobility is that it is super easy to put my own lotion on the middle part of my back. I have been a bad zebra this week, because I have been using my left arm, since the shoulder is already partially out of place, allowing me to reach all the way across my back with great ease! Obviously, this has seriously irritated the damaged shoulder. I really must stop! But it’s so easy to reach “that place” when it itches! 

Moving on… Have you ever been kicked in the stomach by a horse? Yes? Well… You might need to consider a new profession. No? Well… That’s how I have been feeling this week. Now, for me, this is typically an indicator of kidney stones. So… I’m crossing my bits on that one! 

Today at work, I tried to help a coworker put up the cover on our children’s climbing wall… Bad idea. I didn’t let her know, but my right hip totally went out of place! That bugger always gives me so much trouble! Of course, now I feel crooked. Haha! 

Apparently I am also dealing with a bit of a brain fog this week as well. I just finished a 30 minute touch-up cycle on the dryer with no clothes in it! I really hope this won’t damage my year-old dryer! 

Anyway… Spring is making its way to my beautiful Valley! And that means WIND!!!! This also means cold wind, since it is stil, in fact, winter. All of this mixes together to mean a Raynaud’s-y day. All day yesterday,  we had severely high and cold winds, so my hands went ice cold, turning a lovely shade of grey, with cute little scaly spots of red and purple! Yay! No really… It hurt. It sort of causes my skin to burn a little bit and tingle a lot. This means that my ears, nose and toes have also been tingling, with feet hurting. Boo… I vote no, thanks! 🙂

Today was met with snow! Snow! Oy… Don’t mind snow at all. In fact, I love it when my whole body is not already in pain and I’m wearing appropriate shoes! Ever heard of Vibram Five Fingers? If not… You should look them up. I wore those today. A coworker who also has them, was asking me how they do in the snow. At the time, I did not know. Now I do. They do not do well. They do not do well at all. My toes are still cold. Lol 

I know that this is a short update and that it is all about me, but I have really enjoyed writing here! I have learned so much! Not just about myself, but about my own disorders as well as so many others! I hope I was able to show you a little bit of of what it’s like in my shoes and that it wasn’t completely boring for you! I promise to have something fun and interesting tomorrow! 😉 

Zebra hugs!