Day One Update: After the Dr. Visit

Well, day one is over. My appointment was for this afternoon and we got there a bit early. We had a short wait in the very cool (temperature) and very unscented waiting room. It was amazing! I met with the patient coordinator, Sue, and she took us back to be roomed. Sadly, that part of the clinic was very hot since the air conditioner was broken. After having my vitals taken we were taken back to the exam room to meet Dr. Rea and his assistant Trep. It was a little warm, as the room was small and there were four people in there. By the time we were done, my hair was wet from sweat, and my face was really red. The Dr. even remarked about it, and I explained that it always gets red when I am hot.

I was asked a LOT of questions, and it was amazing to hear Dr. Rea asking questions in the way he did. It was like he already knew the answers. I guess that he did. He asked me to stand on my tip-toes, and then do it with my eyes closed. Then he asked me to walk a straight line, and then do it with my eyes closed. I was so glad my son was with me there, as I needed someone to steady me, and Dr. Rea (just turned 80) is very frail. John was able to really contribute to the conversation regarding my symptoms and reactions as well.

I think the most validating thing was the conversation we all had later. I really feel like I now have this whole wonderful team of people on my side. They believe me when I talk about my reactions. They shook their heads when we talked about how I have been scorned by other health care professionals. They knew what I wanted to accomplish and I was able to talk openly about that with them, and not feel any shame about needing extra help. Dr. Rea understood that I am on a budget and only ordered a few tests, but they will be key. So tomorrow I go back in the morning and we start the testing. Bloodwork first and then the skin testing. It also looks like I won’t be here the full week, but that all depends on how I do with the testing tomorrow. Each person is different, and how long it takes depends totally on how my body reacts to the substances. Sue mentioned something about Thursday. I know it won’t be tomorrow. But Wednesday would be nice. We shall see. I am already calling tomorrow “The Day of the Needles.” Your prayers are appreciated. I will try to update tomorrow again. And perhaps upload some video and pictures from the road. Thanks for supporting me! I do appreciate it.

Day One: Morning, From the Hotel Room

So, here we are, in our hotel room. It is really nice! It has pretty much everything that I would want in a "safe" house. It was really nice to be able to relax and not have to worry about whether or not something is going to make me sick. The one exception is the water. It is NASTY! It smells like plastic. There is a filter for drinking water in the kitchen, and a filter for the shower, although I can still smell the plastic in the shower. I still used my own counter top filter for my drinking water, but I did use the filtered water to fill it.

I finally got settled in my bed. It just took a bit to get used to one that is level and straight. LOL And it is taking me a bit to get used to this space. It is hard to explain, but I am never at ease unless I am in my room or in my chair in my living room. Even within my own home, like in John's room or a different chair in the living room makes me food off. I think it is just my body's sense of my surroundings and I don't do well with anything else. I am getting used to a couple of spots here so that is getting better. Once the man-child gets up I plan to make a video of our room and y'all will get to see what I mean.

My appointment with the doctor is for 1:00 this afternoon so I would appreciate more prayer. I am working on my list of questions for him, so I will be prepared. And the only other thing I want to do today is get some groceries. I want to go to the local Whole Foods store, which is in our "neighborhood". I am really craving a salad after yesterday's lack of veggies from being on the road. Ciao for now. I will try to post something later on today once I have a better idea what is going on.

T-minus two days... is that right?

Hey! It is just a couple of days before I leave to go see Dr. Rea in Dallas. He is an Environmental Illness specialist. It is a six to seven hour drive for us, and in all honesty I am really nervous. I thought that I should try to vlog about it and take videos each day so I can keep everyone up to date on what is going on. Thanks for watching!

Let the countdown begin!

I just made the appointment for the clinic visit and so now I begin my countdown to the appointment. (Five weeks FYI) I am excited and nervous and just glad to be getting this done. I don't like being poked and prodded, but I do hope for answers and a possible cure or at least a way to manage my life. So, on the off chance that anyone is actually reading this, and doesn't know about the Go Fund Me page I have, here is a link. There is also one on the right side of my home page here on Blogger. My whole story is there, in case anyone wants to read about it. Thanks for being here, and reading my blog.
God bless you and yours
Deb

Today I had the privelidge of being interviewed by my local ABC affilliate. I got to meet two really nice men that genuinely seemed interested in my story. I have the link to what was on the TV, so if y'all want to see the extreme close ups, here you go!

Here is a link to a blog that expresses very well what it is like for us canaries to try to maintain friendships and family ties.

https://fergiemoto.wordpress.com/2013/03/05/human-canaries-and-friendship/

Day 3 of MCS Awareness month.

May is MCS Awarenss month!

Happy May everyone! I am working on some finals for school so I will make this quick. May is MCS awareness month. There are several people that are working to distribute facts about MCS, so that everyone can be more aware of what it is, how it might affect them, and how their choices are affecting people around them. More to come, so keep checking back here to see what wonderfully creative ways people are getting the word out.
God bless you and yours
Deb

My Experiences in a Couple of Hospital Settings this Month.

So, here is my take on how scented the two hospitals in my hometown were when I had two loved ones have hospital stays recently. Something that I didn't mention in the video is that my son also has MCS and on the last day he was in the hospital he finally spoke out to the nurses and told them that the Purell was making his headache worse. He was on Morphine for the headache, and the Purell was making his head hurt worse! One thing that I noticed was that once we got home, that headache went away with no medicine. While we were there he had to have Morphine every four hours to keep it down to a dull roar, but once we came home where it is relatively unscented, and chemical free, he was much better. By the next day it was gone, never to be seen again. Interesting, no?

So I wanted to continue with the educational videos, but I have been both busy and sick. Being busy with finals in two classes caused me a lot of stress, and then I had to help with some health issues for two people in my family. So, all that to say, I have been out of commission. I did make a couple of videos showing the effects of going out to some scented places, and I will put those up soon. But for now, I thought I would put up the very first video I ever made. This was a persuasive speech I wrote for one of my college classes. Because I didn't come on campus to give my speech I had to do it in front of an audience of at least three people, hence the heavy movement at first showing my "audience." Please forgive the number of times I say "UM" in the video, I was nervous. In fact, I have created an "Um-a-thon" on my Go Fund Me site, so if you are interested, please check that out as well, here. 

Here is my contribution to the #Dear Me thing going on today.

What's in a name?

So I thought I would share some of the different names for MCS. I hope you find this video educational!

So it has been a couple of rough days for me, and I thought I should make a video to share a bit about that.

Woo-hoo! We have made it to the 25% mark of the fundraiser! I am so thrilled, and honored for all of the help. Thank you all so very much and let's keep with the prayers, shares and donations!
God bless you and yours
Deb

Well folks, I thought I would make a quick stop by here to let any of my readers know that I am going to have to push the date of the trip to Dallas back by a couple of months. I am now aiming for June. The fundraising was not going very quickly and I would still have school to try to power through while sick if I went in March. So it just made more sense to move it to June. Thanks for reading my blog, and please keep me in  your prayers.
God bless you and yours
Deb

Now for the June videos:
It looks like I have three days in a row showing the before and after of going out in the public.

WATCHED

Then the next day:



And the next day. Boy, do I have some interesting expressions on these stills!

So this is the very first video I made back in May of 2014. My goal with the videos was to have some that showed me feeling normal and some that showed what it was like for me to be triggered. I will probably not upload all of them simply because I doubt that most people want to see that much of my boring life. *GRIN* I know I sure don't. So, on to the first video. It is very shaky and there is a lot of movement, and I apologize about that right up front. If you have any questions, please let me know.

WATCHED

And here is the next day. I can see a bit of difference, but it isn't too drastic.

WATCHED

Now, this one is five days later and I can see a BIG difference between this one and the first one up above.

WATCHED

I find it very interesting to look at myself when I am triggered. I remember looking kind of like that back during my wild mis-spent youth...back when I smoked pot. That is kind of how I looked. Just a note here: I have 22 years of sobriety this year, so while I don't celebrate my past, I don't hide it either. So that is kind of my disclaimer there. In any case, these are the videos from May of 2014. Thanks for watching!

Hi and welcome to The Girl in the Bubble, a blog about what it is like living with Multiple Chemical Sensitivities and all that entails. I hope to talk about my day to day life, my Go Fund Me campaign trying to raise the money for me to get to a medical specialist in Dallas in just a few weeks, as well as some videos showing what MCS does to me. Just the title of the disorder alone sounds like I am just "sensitive" like I break out in a little rash or something. I wish that was all there is to it. The name is very misleading and there is talk within the MCS community of changing the title to something else, but that is a post for another day. For now, please take a moment to go to my fundraiser where you can read all about what happened to bring me to this point, and how we are doing on the fundraiser. (The link is below my name.) More to come, soon!
God bless you and yours
Deb

gofund.me/g5y7iw