I hate stress.

I don’t even know how to begin this post.  I am tired of being tired.  I’ll start there.  17 years.  Seventeen years.  Maybe it doesn’t sound like a long time.  I don’t know. Skin that burns in the sun, genetic blood disorder that causes organs to fail if iron levels get too high, autoimmune disease that causes food to act like tiny attackers as well as a host of other issues, virus that flared every bone in my body to pain, and then finally, the diagnosis of perpetual pain without a cure.

So tonight, my invisible disease friends, my brethren who look young, happy, normal and perfectly fine on the outside, but are dying on the inside daily, I wish you patience.  Because I know that I need it in my life and lack it.  I lack the ability to find anything remotely nice to say some days and can’t seem to help it.  Today is one of those days.  It is one of those days I wish everyone I come in contact with, I could touch like some sort of cool X-Men power and they would feel what I feel.  Everyone.

People who sound frustrated with me because of my questions don’t realize that I have to plan everything out according to my level of pain.  I have spent the last year weighing what was most important and trying to do that first.  I would like them to know how I feel on any given day.  People who ask me questions even though I have explained everything and sent them copies of things to read, yet ask me the same thing, they need to know that stresses me out.  Lastly, people who don’t have their stuff together, yet expect me to.  They stress me out.

I would give all of the above people a good ole’ magical touch.  How do you like me now?  Oh.  You get it now?  Okay then.

This ridiculous rambling tonight was brought on by the letters W, T, H.

Suck it up

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Circumstances…

In life, things happen.  Good things.  Bad things.  Things beyond our control.  I want to share with you a story about circumstances lining up quite nicely for me tonight.  Many of you have been with me for a while and know of my conditions.  For those of you who don’t know, I have hereditary hemochromatosis, porphyria cutanea tarda, and Hashimoto’s thyroiditis.  If you would like to know more, click the words.  During the last three years, what I have tried very hard to do, is survive what could possibly be yet another diagnosis.  Remember when I wrote about the tests I was going through in March of 2011?  It’s hard to believe it’s almost been three years of pain.  Each year, a different level of pain would come out.  The kind I have never, not once, even really tried to describe in this blog.  I couldn’t bring myself to write it for you. 

Tonight, at my business meeting for my It Works! Global business, I was asked what my favorite product was and why.  I almost didn’t answer because it would mean admitting why.  I said New You, because I can fall into a deep sleep after taking it and barely feel the pain which kept me up before.  With possibly having fibromyalgia, and knowing I do not ever feel like I get into deep REM sleep, which is part of that disorder, plus almost every single symptom associated with this disorder, I am quite honestly a hot mess.  I know this, and share with you through my blog only to provide some hope for those of you who suffer with this kind of debilitating pain.  

A lady places her business card at my place and she is part of my team.  It was the first time I met her and she is a doctor of chiropractic care.  Not just any kind though…because remember, I have been that route.  She asked me after the meeting about my conditions, and had not only heard of them, but had one of them herself.  She looked at me and said I think I can help you.  She asked a few questions and one of my other team members was there as she had previously been in chiropractic care herself.  I told her the story of the time I felt every single vertebrae in my spine.  She asked about sickness as a child, and I mentioned tubes in my ears, then mono.  They looked at each other and I could tell they were thinking the same thing, it was really cool.  She asked if she could press on a few places, and if you know me now, you know I no longer allow anyone to touch me anywhere for fear of pain, but I said yes. 

My friend got chills as Dr. M said what she thought was going on and I nodded too as I had briefly researched that route, but then stopped.  It all made sense.  The coolest thing ever is that she said she wanted to write a paper about me and I believe she can connect these dots that I have been trying to connect for the last 3 years.  She seemed to know how I was feeling because she said “It’s hard when your kids want to hug you, and it hurts.”  Of course, I got teary eyed.  It is hard.  It has been hard.  But perhaps things will get easier after this. 

Guidance

Tumble…

Last year was very difficult for many of my friends.  With January coming to a close, I want to say we are still keeping our renewed spirit.  I know how difficult it is to be around people who are projecting negative energy.  You use your energy to lift them up.  Unless you are like me, and go into hermit mode so as to keep the energy supplies you have left available so you don’t fall flat on your face.  I am not going to lie to you and say that 17 years of trying to keep my energy up has not drained me at times.  With each new diagnosis I face a time of “mourning”.  I go through a period of time where I feel  like each disease/illness/condition is trying to kill a tiny bit more of who I might have been.  I retreat a little bit more.

I finally decided to come back out of the “shell” I had created for myself after this last bout of pain.  When I think of my future, I no longer think of the pain.  It’s still there.  Trust me.  It’s still there.  I researched until I was blue in the face and found countless other blogs saying the exact same thing.  They lost themselves.  They gave up their dreams.  One even quit the path to her PhD.  I get it.  Some said they lost girlfriends and did not even know how to get them back.  I say to you, simply say I’m sorry.  If your friends don’t understand that you took a tumble, then they were not your true friends.  If your family doesn’t understand that your path is not theirs, then how can love come with conditions?

I am one of the luckiest people I know.  The friends who check in on me, I know you are there and I thank you.  The family who stands by me, I know this is not easy on you, but I appreciate your efforts to help me.  And most importantly, the best husband in the world.  You catch me.  So, this is my new favorite quote:

Tumble

 

 

 

“Support” groups…

Many of you know that I have been in a battle with genetic illness for a while now.  Some days are better than others which is why I started “Motivational” Mondays this year.  It is not only to motivate you, oh no, it is to hold myself accountable for the advice I give.  I have a hard time doing that.  Don’t tell anyone.  Anyway, I have to take deep breaths when I encounter people who make me mad just like you do.  But last night, I jumped in a battle that was not entirely my own.

Let me tell you why.  I believe that we are all here together whether we like it or not.  You do not have to like me, but you should always show some respect when you are speaking to me or others even on the internet.  It is not an invisible wall for you to shield yourself and hide your true character.  On the contrary, that’s why I said “invisible”.  You think because you are not known and standing in front of me that you can mouth off to people and no one will stand up to you.  You are sadly mistaken my cyber-bully, no manners, wanna-be a big shot guy (random angry man, not you now).

I don’t know how you were raised, maybe in a barn, but men should be taught to respect women.  Your cussing ladies out in my “support” group was not needed even if one of them always has to have the last word.  Believe me, I know how irritating it can be when people think they are right, and perhaps they aren’t, but you sir, only called them names and provided no logical reasons.  If you noticed the long-winded rant a few weeks ago between myself and lady who has to have the last word, you will note sir that I did not cuss her out.  Not even once.  What I did instead was to use 3 articles from different journals of medicine.  I quoted my doctor’s advice, and reminded her I said this was not about other people, that this was what worked for ME.  So in conclusion, remember, this quote I posted last night:  “People do not seem to realize that their opinion of the world is also a confession of character.” ~Ralph Waldo Emerson

So thanks for leaving after I called you out on your ridiculous manners.  It’s sad you are much older than me and appear to have a granddaughter.  Not sure how you would feel if someone resorted to name calling of her, but try using research to back your intolerable rant next time.

“It takes 20 years to build a reputation and five minutes to ruin it. If you think about that, you’ll do things differently.”  ~Warren Buffett

Painful talk…

I was just asked how I stayed so positive when I write.  The truth is, I am not always positive.  I am angry.  I am in pain.  I have issues just like everybody else.  I have too many doctors and wish that one of them, just one of them, understood the implications of living with “invisible diseases” because they sure as hell aren’t invisible on the inside.  I snap at people just like you do.  The difference is, I have learned to watch for signs since I have been known to make mistakes when in pain.

I have a support system.  One that hopefully forgives me because they are the ones I snap at.  Chances are, if you are my close friend, I have done this to you.  It is because I feel safe with you.  I hope that you will forgive me when I do this and know that I don’t mean it.

I have my parents.  I get on their nerves as much as they sometimes get on mine.  I rant.  I am a Scorpio.  They later forgive me as well.  We tell jokes.  We laugh.  I like to talk to them.  Sometimes I have to remind them that just because I am telling them my problems does not mean I expect them to fix it.  I just want someone to listen.

I have had the same best-friend for a long time.  Long enough to know who I was before I was diagnosed with HH/PCT.  Long enough to know that laughter is the best medicine and I need frequent doses.

Lastly, I have the best family.  My husband and children take care of me.  Without them, I would fall apart.  No doubt.

So the truth is, I try not to talk when I am in pain, but I am just like everybody else.  I make an effort to focus on what is left once you take away my pain.  My diseases do not define me.  I have to remember that.

“The secret of change is to focus all of your energy, not on fighting the old, but on building the new.”  ~Socrates

Building the new