DONT TOUCH ME!

This is a letter my fiance has written up, I am pretty sure he will be giving it to someone at my health insurance or maybe my doctor. Anyways, we all know what its like to live in daily chronic pain but what about an outsiders view in? Are they suffering as well? Sometimes we get so wrapped up in our problems we forget the people closest to us are watching. Anyways here is the letter......

Notes on altered behavior in people with untreated chronic pain

David Kangas

Pain is a powerful force.  In most people, it’s an automatic signal from your body telling you that something is wrong.  It tells you that it’s not smart to put your hand on that stovetop.  It tells you that bear traps probably aren’t the best things to step in.  But in some people, pain is just an aspect of everyday life.

My personal experience with chronic pain comes from my relationship with my fiance.  She has a disorder that magnifies the level of pain she’s in.  Add onto that slipped discs in her lower back, arthritis in her neck, and a hyper-mobility disorder that causes frequent dislocations and joint pain.  Any one of these chronic conditions warrants proper medical treatment and pain management... however, she receives neither.

Since her pain has been gradually intensifying over the past eight months, I’ve noticed a drastic swing in her behavior.  After a while, she started having feelings of bitterness and anger towards her doctor and the healthcare system.  That anger quickly spread out to family, friends, random people on the street.  Then came the depression as she started to realize that her pain was not going to go away.  Eventually, the pain started causing severe stress tension in her back, aggravating her slipped discs and arthritis.  This led to her cutting off physical contact with the people around her... she could not tolerate people touching her for fear of increased pain.  Finally, the lack of physical contact has led her to start cutting off emotional ties.

Today, she cannot connect with anybody around her.  She has no patience for anything or anyone, and the smallest setback in her day sends her into a deep depression.  She actively tries to drive away her support system (including myself), and on her worst days she considers suicide as an alternative to a life in constant pain.  I strongly suspect that those ideations will turn serious if she does not acquire pain management soon.  She is not mentally ill, nor is she seeking out narcotics for a drug high.  She only seeks out relief, and is denied at every turn.  She cries.  She screams.  She threatens.  She wants to die.

My pain

I can show you every medical document and personal stories about what living with multiple chronic illnesses is all about. I can plead with my doctors to understand. But the truth is they never will.....you never will, unless of course you are like me.

I have read so many websites, medical journals, personal stories as well as continuing to talk to others in the medical profession. The truth is the knowledge all boils down to this.

This is my understanding of what living with Dysautonomia is like;

You will suffer everyday of your life. It's like having the flu, only much worse. Everyday is different. Some days you have energy others you are too sick to lift your head up. There is no cure, and no real treatment. And for myself all the "typical" treatments dont work...so i am in stuck in limbo. Everyday i am in pain on a varying degree, if you ever saw me someone and said hi you would have no idea how sick i really am.
I am constantly nauseous.....think of the morning sickness you had during your pregnancy *for the women* or when you had that horrible stomach bug *for everyone else*. Only instead of beginning and end.....its everyday all the time. These are the symptoms I personally deal with pretty much daily


  

• *headache (sometimes migraines, or pressure headaches that leave me screaming in pain)
  *Diarehha (sometimes 10-12 bowel movements a day)
  *stomach pain/cramping
   *Nausea
  
  
  *vertigo (like the room is spinning)
  *dizziness
  *Syncope (passing out, blacking out, sometimes up to 8 times a day
  *breathing trouble (when sitting upright or standing for too long)
  *chest pain (like I'm having a heart attack)
  *trouble concertrating (like ADD)
  *memory issues (often as severe as not knowing where i am)
  *seizures
  *muscle spasms
  *sweating too much
  *extreme fatigue (where i literally feel that if i dont sleep right that second i will die)
  *insomnia
  *vision issues (blurry, double vision, temp blindness)
  *joint pain
  *muscle pain
  *constant dehydration (requiring frequent ER visits to get hydrated)
  *peeing literally every 15 minutes
  *world recall issues (trouble finding the right words)
  *irritability 
  * mood swings
  * joints sublaxing (partial dislocation and yes i put the joint back in)
  * vomiting
  *breathing problems
  *Tachycardia (rapid heart beat the highest recorded was 195)
  *blood pressure issues (lowest recorded was 75/25 highest was 155/120)
  *circulatory issues
  *Acid Reflux
  *tremors
  *pupils changing size randomly (i look high most of the time)
  *Heat intolerant (can't stand anything over 65 degrees)
  
  
  
  
  to name a few......
  
  
  It's a living hell, i wont lie. I got sick when i was 14 (from what i remember) thats when i started passing out. It took 5 years later to finally hear the term 'Dysautonomia'. I am now going into year 6 of being sick and now im wheelchair bound and bedridden....and im only 20 years old
  
  
  I fight with my insurance and doctors more then i socialize. I lost all of my friends and family to this illness. I was misdiagnosed Bipolar before finally realizing that no....I am NOT Bipolar I am in fact sick. I have been treated very badly by many doctors. No one can tell me what caused this, no one can prove to me this won't kill me directly or in directly. Everyday is a new adventure...literally.
  
  
  I am getting completely tired.....this is enough for tonight.....more blogs to come.....
  
  

So young, and yet so F'ed up

Its kinda funny how life changes in an instant. One moment things are great, next you have a loved one dying, you lost your job, your dog died.....and the next things are ok again. Its weird how life works. People always say "live like its your last day", what does that really mean? I mean if its honestly the last day of your life would you still be working at your job? would you stay pissed at your family?  NO you wouldnt, well most people wouldnt.

Or that other phrase that always pisses me off...like more then anything "you have your whole life ahead of you"....people tend to say that when im in the ER with some nasty infection and they look at my medical history and they have nothing better say...i just smile and nod. But inside im thinking WTF is wrong with you???  I'm a 20 yr old medical wreck..and all you can say is i have my whole life ahead of me. I could die tomorrow and thats really the phrase you want me to hear??? Sometimes i wonder where people's logic come from...or if i can even consider it logic.

Today has been frustrating to say the least. On top of having a horrible headache that is possibly serious but no one will really do anything other then say "we will give you a call back", "that doesnt sound pleasant"....to top that off my heart rate has been through the roof and im passing kidney stones...so yay!! sounds like i hit a jackpot today....

Sorry this is short, i really wanted to post something, and ive been having horrible horrible brain fog so this is the best i can do for right now. I promise im more entertaining....just not today

Thanks

Gatorade Whore