Say What...?

I know there have several posts about what not to say to those who are chronically ill.  While I agree with most of those, I have a few more that I hear ALL the time that really get under my skin.

I apologize in advance because this is a bit smart-assy.

You’re too young to be sick:

No. I’m not. This is just ignorant. Babies get sick, children get sick, and I got sick.  You are never too young to be sick. I have heard this so many times and I’m about ready to scream.

It could be worse:

Yes, you’re right, it could be worse, but it also could be a lot better. Telling me that there are starving kids in Africa helps no one. It doesn’t diminish my pain, and it doesn’t feed them.  All suffering is relative.  What hurts one, may kill another so there is no hard and fast rule about what is bad and what is worse. Yes, it could be worse, but it’s bad enough and I’m allowed to be sad about that every now and then.

Have you tried…:

Yes. I have.  Have you tried closing your mouth? As a spoonie, I am more than aware of the new medications and trials out there. I research them religiously. While your advice is appreciated, it’s not wanted. 

I know you’ll be better soon:

Do you know what chronic means? Seriously? I know people like to have hope and remain optimistic, so do I; but I am also realistic and it is actually insulting when you look me in the eye and say “you’ll be better soon,” Chances are, I won’t.

I think I might have that! / Oh, that happens to me!:

I’m sure you do get stomachaches and have acid reflux now and then. I’m truly sorry that anyone has to experience any type of pain. I’m sure you do get a little dizzy upon standing up and I know that can be scary, but you should see a doctor before you compare your fight to mine. You have no idea what I go through; just like I have no idea what you go through so don’t assume you can diagnose yourself based on the limited knowledge you have of my symptoms.

This is not directed at anyone in particular and it is not meant to offend anyone. I know people mean well but words, even well intentioned ones, can have repercussions and they can be hurtful and insulting. Please, just think before you speak. 

The Whole Picture

It’s amazing the support you get when you go through a tough time or a change. Its also very eye opening the support you DON’T get. 

I have had prayers said all around the world for me. I have had cards, flowers, candy, and stuffed animals sent to me. I’ve had people cry in the hospital for me, but...

I’ve also lost friends, been stared at, judged, told I was faking for attention, and said I have let my illness define me.

Yes. I DO talk about my diseases.

Here’s the thing; there is so much to who I am.

 I am a daughter, a sister, a best friend, a fighter, an unconditional lover, an advocate for animals, a believer, an athlete, an artist, and a little bit crazy, but I am ALSO sick; and I probably always will be.

I refuse to hide any part of me because it makes other’s feel uncomfortable. I refuse to be silenced because my posts or rants are “annoying.”  My WHOLE self is beautiful. EVERY part of the puzzle fits together perfectly to make me who I am.

A Little Fun

Here's some humor for your day! These sayings are from myself and fellow spoonies. Enjoy!!

You know you have a chronic illness when…

Your wifi automatically connects when you step through the hospital’s doors

You can’t remember the last time you were well enough to shower

You have a packed hospital bag ready at all times

When someone says “you look good” and it actually makes you feel frustrated; not flattered

The pharmacist brings your medications to the counter without you having to give him your name. . . and then asks how the kids are and tells you about his vacation.

Your spelling has improved dramatically, especially on words like “fibromyalgia” and “osteoporosis.”

Your friends on social networks have no idea what you actually look like anymore because all you post as your profile image are awareness ribbons

You know every scripture about healing and can finish people’s sentences when they try to quote them to you

It’s more fun to find “cute pajamas” than actual clothes

You actually enjoy talking to telemarketers because they can’t really hang up on you and you can use them for a therapy session

You spend more time in PJs than in real clothes

You know where every bathroom in the tri-state area is

You start getting junk mails sent to you at the hospital

You can go 0-90 in a heart beat…literally

Update

Okay, so I realize it's been over ten days since I last posted. I apologize for that!!

Since we last spoke, several things have happened. So here is a quick update!

I saw my neurologist who FINALLY put me on something to stabilize my blood pressure! It has helped so much and I am so grateful to that little pill. I don't pass out nearly as frequently and my blood pressure is no longer scarily low. 

I also was supposed to have another Gastric Emptying Scan, which unfortunatley, I could not complete as I threw up all the medication.

As ya'll know, I've been losing weight and my ER trips were becoming more frequent so I made a plan with my GI for TPN. (IV nutrition) Unfortunatley, my disease progressed so fast that I had to be admited to the hospital to start TPN early. I am now home and doing well (fingers crossed it continues) on TPN at home. 

I have several upcoming appointments and will share with ya'll when I know more!!

Now for the fun stuff! I decided to start a little charity called Tori's Happy Pills. 

What I am going to do is send out my homemade glitter pills to people suffering from illnesses. If you or someone you know wants some, here is what you do:

Message, text, or kik me their name and address and BAM, (in a few days) they will get some sparkle into their lives. 

THIS IS A CHARITY SO IT IS COMPLETELY FREE AND WILL ONLY SURVIVE ON DONATIONS. 

I only ask one thing, share to spread the love! I can't wait to start! 

Patient Profiling: An Ugly Truth

Earlier today I came across an article on patient profiling. I had long since known I was a victim of this practice and decided it is time to speak out.

My doctors have profiled me as an anorexic, a bulimic, and severely mentally ill.

As a young child I struggled with depression and an anxiety disorder. These struggles were constant and real for a very long time. When I started throwing up daily and losing a scary amount of weight, my doctor was quick to slap the big and scary "eating disorder" on my file and refused any further medical treatment for me.  I respected her thoughts but knew there was something else going on inside of me.  I consulted a specialist and was finally taken seriously. After a myriad of tests, I was diagnosed with gastroparesis.  When I continued to lose weight, I was sent to the hospital for more radical treatments. After several failing feeding tubes, the doctors, obviously frustrated, claimed my disease was now "in my head."  They refused to give me pain medications and threatened to send me to the psych floor. After weeks of this degrading treatment from so called "professionals," I wised up and asked for a new doctor. Two hours after visiting with this new doctor, I was being scheduled for an emergency surgery. This pain was NOT in my head, it in fact, was in my gall bladder.

Later on in the year of 2013, I was in the middle of a massive gastroparesis flare. I wasn't holding down anything, including water. After a few days of suffering I went to Kid Med to get fluids and IV nausea medications. As soon as the doctor came in to see me, she suggested I go to an eating disorder clinic and discharged me without any sort of medical treatment.

One person can only take so much. After that, I started to doubt my gastroparesis diagnosis, I started to think that maybe I was, in fact, sick in the head. I even let one of my doctors talk me into going to an inpatient eating disorder clinic. (that's a story for another time)  After I walked out of there AMA, I think my doctors finally started to realize the seriousness of my physical disease.  However, at this point I had began treating myself because I no longer had any trust in doctors.

To this day, when I walk into a clinic, ER, or doctors office, I know for sure the first thing they think is "this skinny young girl cannot be this physically sick, she must have an eating disorder." I can see how it is easier to send me off to psych without any medical treatment, but it is not right.

Now, I am in no way belittling eating disorders or those who suffer from them. I imagine it is a special kind of hell, it's just not my hell.

So, let me end by saying this; to all of those who suffer from an eating disorder, you are in my thoughts and prayers. To all of those who have been a victim of patient profiling, I encourage you to stand up and speak out.  This will remain a problem so long as it is covered up and ignored. Let's change the way doctors judge us. Let's end this now.

Pain

"Pain. You just have to fight through. Because the truth is, you can’t outrun it. And life always makes more."

Chronic illness does not end.  It does not get easier; but you mature and you strengthen and you learn how to cope with the never ending uphill battle. Pain, no matter what form it comes in, whether it be mental or physical, is stronger than all of us. It will knock us on our butts EVERY. SINGLE. TIME. What I have learned is that if you let pain overpower you, if you succumb to it, it becomes easier to ride out. Make no mistake, all pain ends, but it is ALWAYS coming back. In another form or another time, you will come face to face with this monster again.  The thing is though, everyone can live with pain, and most people are.

  It seems to me that a common misconception, at least among my community, is that the more pain a person lives with, the stronger they are.  This is simply untrue.  I have had so much pain in my life, but that is not what makes me strong. I am not strong because I don't give up. I am not strong because I fight with a smile on my face. I am not strong because I get up and live despite my overwhelming pain. I am not strong. God is strong. His strength flows through me. His strength and love powers my every move. His grace is sufficient for me and it is for us all. We have to learn how to accept it and show the pain of this life that the strength of our God is unbeatable.

SHE'S BACKKKK

I have been avoiding this for quite some time now.
A few of you know that a couple months back I was given some terrifying news. I was told that if I didn't return to artificial nutrition, it was unlikely that I would live to see 21. I felt in my bones that this couldn't be MY truth, so I fought it. I went into what my doctor called an "unexplained, miracle, disease remission." Even though I still relied on a mostly liquid diet, I had more energy and was slowly gaining weight. It was fantastic.

Over the past few weeks though, things have been regressing to my pre-diagnosis stage; when I was so ill that I was living on TPN and confined to a hospital room. Remember that? Yeah. It sucked.

Today, what I feared the most has been confirmed; the belly monster is back, and she is PISSED.

Due to my bodies inability to tolerate any sort of gut tube feeding, the recommendation is that I start back on TPN.

Keep on sending me all the love, prayers, and good vibes you have!!!

Love you all so very very  much!

"When you stand and share your story in an empowering way, your story will heal you and it will heal somebody else." ~Iyanla Vanzant