What's up with chuck?

I know the title of this blog is a little confusing, but I didn't want to title it "What's up with my puking 3 times a day?", LOL!! I didn't want to scare people off, ha ha! Now, vomiting isn't necessarily a symptom of RSD as far as I know, but it can happen due to high pain levels and high stress levels. I've been experiencing a lot of digestive issues as far as appetite loss, abdominal cramping, nausea, and tushie issues (I'll leave it at that!).

I've lost almost 80 pounds this year and that's with Lucy's pregnancy. Normal women gain 30 pounds during pregnancy and I lost that. But she still came out with a very healthy weight of 7 pounds 9 oz. As of January I've lost another 40 lbs which is when RSD starting effecting me. My body has changed so much with all of this weight loss. I've gone down over 4 pant sizes. There are quite a few people in my life that are so excited about my new figure. And they are wondering why I am not. I think it's because I didn't go on some new fad diet and I didn't start exercising 5 days a week. I lost all of this weight due to excruciating pain. Pain that makes it so I have no desire to eat. I have to force feed myself a granola bar or a piece of string cheese before I take my meds in the morning. Even drinking water can send me into a fit of vomiting. It's gotten to the point where I have to carry "puke bags" in my pockets or in my purse, because of the instantaneous need to well, puke.

My body is also changing so much to the point where I can feel bones that I quite frankly didn't know existed. It's so weird to touch the side of my torso and feel my rib cage or put my hands on my hips and have them actually be on my hips. Usually my hands were on my love handles, lol. But as I have navigated my new body I've found some new discoveries besides bones. I've found lumps. One lump at the bottom of my rib cage, 2 lumps underneath my knee and a very large baseball size lump at the base of my neck.

The skin on my hands are peeling off in sheets as well and I am still experiencing a lot of what they call "allodynia" which is extreme sensitivity to touch. I try to hold out the majority of my pain tolerance for my kids. What I mean by that is that it hurts so bad to be touched so when I know it's time to do something with the kids, I let them touch me, grab me, hold on to me, kiss me, whatever they want and I just grin and bare it. But I only have so many of those moments before the pain becomes overwhelming.

So I go to see Dr. Hess again tomorrow to figure out if there is something else going on that is also adding on a plethora of illnesses. I plan on talking to him about all of the above. I am hoping this time he hears me a little more clearly because last time, I felt that he was going so fast and being such a goofball (which a big part of me, I did enjoy!). But I want to be heard, this is my life, this is my future. And all of these new symptoms are very scary. So please pray for me that Dr. Hess will be very understanding and open to listening to me tomorrow.

Hope you all are well!

Love and Hugs,

Chrissie

The Letter to Normals

This is a letter I found on the internet (auther unknown), but I edited it from my perspective:

Hello family, friends, and anyone wishing to know me,

Allow me to begin by thanking you for taking the time of your day to spend time reading my blogs and getting to know the "new" me better. A person's time is their most valuable asset and yours is appreciated. I want to talk to you about RSD and other chronic pain disorders. Many have never heard of these conditions and for those that have, many are misinformed. And because of this, judgements are made that may not be correct. So I ask you to keep an open mind as I try to explain who I am now and how RSD has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who's attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won't see my scars as you would a person who, say, had suffered a car accident. You won't see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain could be more destructive because people can't see it and do not understand...

Please don't get angry at my seemingly lack of interest in doing things; I punish myself enough, I assure you. My tears are shed many times when no one is around and usually only when I am at my limit. My embarrassment is covered by a joke or laughter, but inside I want to cry....

Most of my "friends" are gone; members of my family are starting to tire and I fear they too will abandon me. My illness has been questioned. I have been called unreliable because I am forced to cancel plans I made at the last minute because of the burning pain in my arms and legs, so intense that I can't put my clothes on and I am left in tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. I may not remember what i promised to do for you, even though you told me just seconds ago. I do not have selective memory. On some days, I just don't have any short-term memory at all. As I try to maintain my dignity the demon assaults me at every turn, please try to understand....

Sleep, when I do get some, is restless and I wake often because of the pain the sheets cause to my skin or because I twitch uncontrollably.

And just because I can do a thing one day, that doesn't mean I will be able to do the same thing the next day or next week. I may be able to take my kids to the park on a sunny day; the next hour I may not be able to walk to the fridge to get a diet pepsi because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say "but you did that yesterday!" "What is your problem today?" The hurt I experience at those words scars me so deeply because I fear I have let my family down again; and still they don't understand.....

On a brighter note I want yo to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another's face light up and smile at my wit. I love my babies and shine when they give me hugs or greet me with their infectious smiles. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you guys and want nothing more than to be part of your life. And I have found that I can be a strong friend in many ways. I am your friend, your cheerleader and many times I will be the one to make sure you have the appropriate gifts on farmville or make sure to reach out when you are having a rough day. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals...and also this demon...Do you have an unseen demon that assaults you that no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, I promise you that. I will not let you suffer alone. I will be there in ways that I can and probably ways I shouldn't. I will give all I can as I can. I promise you that. But I do have to do this thing my way. Please understand that I am in such a fight myself and I know that their is little hope of a cure or effective treatments, at least right now. But I will hold on tight to that little bit of hope, I will hold on like hell. Please understand...that I am just like you...Please understand.....

The Great Escape

Well it finally happened, I knew it was gonna happen eventually. I am only human and can only take so much. I've been like a ticking time bomb, and I finally exploded. The only way I can explain it to help people to understand from an RSD standpoint, is that one thing you experience with your sympathetic nerve, is a "fight or flight" sensation and also explosive amounts of adrenaline. Well the combo hit together at once on Saturday and I couldn't handle my surroundings and I ran. I got into my car and started driving. And once I did I realized, I have no place to go. Driving was hell, very painful to my legs and they started to go numb, so I needed many breaks. I know I am not supposed to drive, I know it puts myself and others at risk, I do know this....now. But not in the moment, there was no logic, no reasoning, no real explanation.

So as I was driving I started to panic because I knew I needed to take a break as I was balling heading down the road. I couldn't find a single empty parking lot anywhere. I wanted to find a peaceful park or a place by a lake. But they were all crowded with people. So I found an empty church parking lot, I pulled in and started balling. I did call my mom to let her know because she was planning on being back to the house at 5 to relieve Chintan so he could go to work.

What I ended up doing was driving to see a friend of mine that I've worked with at a salon for a couple of years (when I could work, that is). I was going through a major heat wave and still going on adrenaline, I had her shave my head. I had her get out the clippers, put on a #6 and go to town. I had my haircut 2 weeks ago and it had already grown well over 2 inches. I wanted it gone. So she calmly obliged and when she was done had me sit in the backroom with an US weekly (one of my dirty little obsessions that she knows all about from work, lol). She was about to close and then took me over to Target because I was in no position to go home. She pushed me around in a wheelchair while we shopped and talked and helped me to calm down.

Usually my "fight or flight" attacks only last between 10 and 30 minutes. But I couldn't escape it, probably because it was mixed with so much adrenaline. I knew by driving and going to Target I was risking people thinking "she's not that sick, she can drive, she can shop" and I was right. I need to reiterate that with pain disorders a harmful assumtion like this can really hurt someones feelings. Just cause I can do something one day, DOES NOT mean I will be able to do it the next. And in this situation, I wasn't driving and shopping because I felt good, it was pure adrenaline that was keeping me going. Adrenaline, anger, frustration, sadness, etc. But in no way was it because I was having a good pain day. In fact the stress from the past week has gotten me so sick that I've been having non-stop migraines, throwing up constantly, insomnia, and horrific pain. I know in my head that "to just get over it" would be a wonderful idea, but when you are dealing with the amounts of pain I deal with on a daily basis, your thought process is completely screwed up. RSD is in the brain, it effects everything. Logic, reasoning, emotions, stress, thoughts, pain, mobility, everything. And I know now why my dr. is very passionate about me not stressing, because this is what can happen. Now I know that it is a very rude assumption to ask the people in my world to try not to stress me out. They all have their own worlds and lives and I would never want anyone to tip toe around me. I WANT so desperately to be normal and to be treated as such.

I know that running away wasn't a good idea, but like I said, I am human. I can only take so much. I am so busy fighting for my rights as a mother and a human that I have nothing left for RSD. My mind is wrapped so heavily around the state of guilt I constantly am in, I have a hard time expressing my feelings and wants. Well this week was horrible because I am starting to always express my feelings. My "happy face" has left the building. I was raised to shove and bury my feelings and put on my happy face all the time. Don't say a thing, it could hurt someones feelings. And as wrong as that may sound to some people, I miss those days. I miss my happy face.

On Friday I go see the pain psychologist, thank God. I know my mom and husband are ready for this as my depression starts to rear it's ugly head and I start to not be able to control what comes out of my mouth. They want to old Chrissie back the one that smiles and says "whatever". The laid back Chrissie that could be talked into everything, she was so much easier to deal with. I covered everything with a joke or a smile. I miss that girl and want her back. My relationships were so much easier, I wasn't a burden then because nobody had to "deal" with me. Hopefully the psychologist can help me find her again. I want 90% of her back, I need 10% of this Chrissie so I can stick up for my time with my kids. But other than that I want to go back to caring about everything and everybody else. I want to be the caregiver, not the caretaker. So hopefully in a weeks time she'll be back. Hopefully in a week I'll have the strength to just sit back and enjoy the ride. In the passenger seat where I've always done best with.

Man, I'm gonna need more than an hour with this guy, lol!!

Lots of love and hugs,

Chrissie