Sometimes It All Get’s A Little Too Much

“Sometimes it all gets a little too much,
But you gotta realize that soon the fog will clear up,
And you don’t have to be afraid because we’re all the same,
And we know that sometimes it all gets a little too much.

She would always tell herself she could do this
She would use no help it would be just fine
But when it got hard she would lose her focus
So take my hand and we’ll be alright

And she knew that she would be okay,
So she didn’t let it get in her way.”

(A Little Too Much – Shawn Mendez)

I’ve been extremely behind on updates and I’m really sorry that I’ve been neglecting this page for the last 6 months or so. Life has been, well, extremely hectic. I’ve been really sick with new and increasing symptoms, and I’ve been learning how to manage a number of new diagnoses, new treatment plans, and new specialists. Not to mention school, family, pets, disability cases, social media pages, and of course, the Undiagnosed Warriors Support Group that launched last summer and continues to grow in numbers day by day. While this all of this has been pretty exciting, I have to admit that I completely and utterly exhausted. With an ongoing, steady decline in my cognitive functioning and a ridiculous amount of writing assignments and research papers to do school, my motivation to write anything has been minimal, to say the least. However, I haven’t forgotten about this blog and the chronic illness community – in fact, it’s on my mind almost all the time. Luckily, there is light at the end of the tunnel and there is so much that I want to share with you all. I honestly can’t wait to get back to writing again and on a regular basis. I just wanted to let you know how much I appreciate every single one of my readers and I want to thank you for hanging in there with me. Everyone has been so patient with me as I try to get both my health and my life back in order, and I can’t tell you how much I appreciate it. In the meantime, please follow along with my social media pages because they are far easier to keep updated with all kinds of really good content, including research articles, infographics, chronic illness awareness items, inspirational quotes, and various tips/tricks for living well with an invisible, undiagnosed, or chronic condition.

Undiagnosed Warrior Facebook Page: 

www.facebook.com/UndiagnosedWarrior

Undiagnosed Warriors Support Group:  https://www.facebook.com/groups/UndiagnosedWarriors/

Undiagnosed Warrior Instagram:

https://www.instagram.com/undiagnosedwarrior/

Undiagnosed Warrior Pinterest:

https://www.pinterest.com/UNDIAGWARRIOR/

 

When your online chronic illness friends just get it

I have some really amazing friends in real life, don’t get me wrong. I have a lot of love and support coming from both my friends and family who have been quite patient with me as I navigate this uncharted life of chronic illness. However, the one good thing that comes with being sick (perhaps the only good thing about it actually) is all of the amazing people I have connected with online, both in the support groups on Facebook and here on my blog page.

Seriously, I’ve been so lucky to have the opportunity to talk to some of the strongest people imaginable… that have fought for everything in their life. I’ve heard stories from other patients that were anywhere from awe-inspiring and uplifting to ones that tore me apart with sadness, but I am grateful for them all because I find a piece of myself in each and every one of them.

Still, the other night I was again reminded how important my online friends are for me in learning to cope with the life I’ve been handed. I know my friends and family try to understand what I am going through, and for the most part, they do get it as much as they can, but as the saying goes “no one really gets it until you get it.”

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For instance, I was actually feeling a little lonely the other night and was in a lot of pain from trying to eat earlier that day. While I can’t say that the following two conversations I’m about to share actually made the pain go away, they did, however, lift up my spirits and reminded me that there are so many people out there that just understand how silly, crazy, and ironic the “sick life” really can be – and humor goes a long way these days.

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After discussing the possibility of going back to work if I can ever get myself better, the first conversation went as follows…

Conversation #1 

Me: I don’t have one to quit currently so…

J: Well then you have nothing to lose

Me: Exactly. Or maybe I’ll join the circus. My options are wide open at this point lol

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J: You could become a wrestler

J: The Undiagnosed Warrior!!

Me: I’m too short I think lol but I did belong to backyard wrestling in my heyday

J: That’s where most of the pros start

J: Your finishing move could be the Nutcracker lol

Me: Oh my God! Yes. I’m going to make a promo video asap

J: Lol I can’t wait to see it!

Me: That’s too funny

J: You could be like “Don’t make me go May-Thurner on your ass!” Lol

Me: That’s why it would be so funny!
Me: It world be a good awareness project maybe
J: Exactly
Me: Not sure how long of a career I’d have
Me: I’ll just do one cameo
Me: Then a horror film based off of the Nutcracker ballet
J: Then after you get everything fixed you can be The Ultimate Diagnosed Warrior.
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J: I‘m telling you this could make you famous lol

Conversation #2 

(You may have seen the comments on my previous post)

E: I’m so glad you got that radiologist to look at your scans!!!!!! Take your husband with you and that fantastic image printed out in an 8×10 to put on the last page of the radiologist report as an “oops how’d that get there?”😉 just kidding, but it’s fun to think about those things sometimes!
I’m sorry your doctor’s abuse you so badly, but now hopefully you can get the help you need.
Love and gentle hugs!!

Me: Thank you. And actually, a poster size print out is not a bad idea. Maybe I’ll make a presentation image by image to prove my diagnosis lol

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E: Print it on the back of a tee, it’ll be a great “mic drop” effect as you leave her office!😛
Walking into a Dr office with one of those tri-fold poster board things would be so funny, or a flip chart. Totally retro. Just to make sure you don’t lose them with this crazy new thing called technology since they obviously don’t know how it works (hence missing the blatantly obvious scan results). I’m dying! Just “listen here doc, I flipping told you so, and this appointment that I paid you for is going to be me proving it” LOL!

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Me: Oh my God! I can’t breathe. That would be epic, right? I’m pretty sure they sell flip charts at Office Depot, no? Ohhh, I can even bring in those fancy smelly markers from back in pre-k and draw pictures. Maybe even a Lazer pointer? Okay… The Lazer pointer may be too much… but still.

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E: They definitely still sell flip charts and scented markers!!!! Do it! The laser pointer may be a little over kill unless the office is massive, but the rest is perfect! If she’s gonna be such a jerk and waste your time and money like she did you should totally do SOMETHING hahaha😛
OMG I’m dying. Man. If you even make it just as an art therapy thing, even without actually taking it, I totally want photos!!!! Priceless

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Me: Haha maybe that’ll be my art project for my week off of school 😀


At the end of the day, having someone who’s been there and really gets it is necessary when you have a chronic illness. Sometimes it’s the little things, even something as simple as funny or silly conversations, that make even the difficult times much more bearable and a heck of a lot less lonely. Plus, if other people “don’t get it” or they think you’re just being weird, you can always both blame it on the meds, right?

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I shot for the sky, I’m stuck on the ground…

The sadness always follows a hard blow.

I know these feelings won’t last forever,

but it feels like it’s never going to get better. 

I feel like I am never going to get better.

It doesn’t help that I have been green with envy lately. One of the support groups I belong to for the compression syndromes has had multiple members just recently complete surgery or are scheduled to have it done soon. Despite the long recovery time, not to mention the pain and time spent in ICU, I can’t help but feel a twinge of jealousy. I’m happy they have doctors that listen to them and are willing to do research. And that they will hopefully be getting better. But I can’t help but WISH that was me.

Yes, I said it.

I am in fact JEALOUS of other people who are sick

and having surgery.

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Am I absolutely crazy or what? 

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I know I shouldn’t compare myself to others, but really, though, I am just sad that I feel like my doctors aren’t concerned about how this illness is affecting my whole life and that it seems to be getting progressively worse. Maybe that’s unfair to say, but it’s how I feel.

I mean yes, they’ve finally run some tests and tried medications, but nothing has made a difference in how I feel. There has been no improvement or relief thus far. Not everything is being documented in my medical records, according to the notes I am perfectly fine (just like my blood work). When I do get abnormal tests, they are blown off as insignificant. How can I not be sad?

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I had to put my rabbits up for adoption (still searching for a home) because I can’t clean their cages adequately anymore. My hands are so raw from all the rashes, they hurt to hold anything (even typing on the computer causes pain). My joints are so stiff and I’m too weak to carry the giant cages outside to the trash. I feel like I am falling apart.

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All I  want is to feel better. I’m willing to do or try anything to have one day of comfort. I just keep feeling worse each day that goes by, but no one besides me seems concerned about this. I’m so sick every time I eat. The pain, especially tonight, is so horrible it HURTS to breath. With every inhale I take I feel like I am going to throw up. I’ve only eaten a handful of tortilla chips today because nothing else will go down. How is this ok? or normal?

Must just be in my head then, right?

I’ve tried to take my mind off my sadness by attempting  the tricks the cardiologist recommended to help with the POTS, through water and salt loading (drinking tons of fluids and eating/drinking large amounts of sodium), and low-grade exercise. So far, I haven’t noticed much a difference, but that could be due to the fact that my stomach doesn’t seem to want to cooperate with either food or water intake these last few days. I’ve also been “running” on the elliptical for about 15 minutes a day. Even though I am not “pushing myself” too hard, my heart rate exceeds 200 b.p.m in less than 5 minutes. Shortly after, the pre-syncope comes and I have to lay on the floor until my heart rate goes back down. Today, I decided to check my blood pressure after working out. I waited until I had sat for 10 minutes or so, and my blood pressure read 28/26, with a heart rate of 135. I’m pretty sure I should be dead, according to the chart. And yes, I ran it twice because I thought it was an error. I am not sure how I was upright then, but definitely I feel the effects now.

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I am not sure if I should keep going with it or wait until my cardio tests come back. I did finally get an appointment with my primary care physician for tomorrow to get another referral to vascular surgery. After three days of calling and getting connected to the answering machine (that has been full since Friday – and yes, it was the voicemail of no return as well), so I drove down to the office to make an appointment. Yes, this is absolutely ridiculous, but at least I finally have an appointment. More testing on Wednesday in the hospital. On the bright side, at least some of the doctors are still trying. I’m just so tired at this point, I”m ready for this all to be over, but it doesn’t look like that will be the case anytime soon.

I’m sorry for the depressing post, but I just needed to get this all out of my head.

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Living with a chronic illness isn’t always about the fight to be strong.

Or motivating others.

Sometimes the hardest part of the fight is just getting through the dark times.

The times you’re in so much pain it hurts to breathe or even cry. 

Luckily, these feelings don’t last forever…

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“Hang on, when the water is rising

Hang on, when the waves are crashing

Hang on, just don’t ever let go…” (Plumb)

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