Diary of an MCS Sufferer

Gosh, I hate it when people who should know better come over to my house wearing their smelly stuff. My nurse came over and set off a major asthma attack. It took about 2 hours to get my breathing back under control. The best I can figure it is either her shampoo or her fabric softener. Both were smelly. She has been here before and didn't have a problem, but this time we sure did. Not exactly sure what it was or just the combination of the two. It really drives me nuts to know that people sometimes just don't think. MCS really sucks.

Well, summer is here. What a wonderful time!! I am doing much better with walking again, but let me tell you from experience -- don't break your leg. It really is no fun!! It's really hard to carry things when you have to use two crutches. But enough of that. I am much better and am almost back to the normal I had before I broke it.

Today is a gorgeous day. Had to go to the doctor today. I receive most of my medical care from the VA. It's really nice, except when you have to wait for 2 hours to see the doctor because they were late that morning, or when you never get to see the same provider twice so you have to explain your entire medical history every time you go in. Oh well. At least I have care and most of it is not bad. Today I had to explain (again) why people who have a trach cannot use dry powder inhalers. With a trach, I don't breathe through my mouth like most people. I had the trach put in in 2004 as a last resort. I was having so many health problems and breathing problems we couldn't keep my airway open. I had the trach put in to buy my some time to find a "cure" for my breathing problems. Turns out, the trach was the cure for me. I do not advocate everyone have this done. I worked for me and I am thankful. Before I had the trach put in, my body was shutting down and things (my heart and lungs especially) were starting to fail due to the stress from trying to breath and the allergies and problems. We hoped that the trach would allow me to live at least another year or so and give me some quality of life for that time. As you can see, it has given me a new lease on life. I am NOT cured. I still suffer from the allergies as before -- the difference is that my throat can no longer completely close and a life threatening asthma/allergy attack is actually preventable. It's hard for my throat to completely close with a chunk of plastic in it! After the surgery, when I was in ICU, the doctor walked in and saw me bouncing around the room and said to my mom, "I think I have unleashed a monster." I will be eternally grateful to him for giving me back my life. The best advice I have for someone whose MCS is as severe as mine is to find a pulmonologist and ENT doctor who will LISTEN to you.

Okay, so that is the history of my trach. I have it, it is part of me and I am very thankful for it. But, because of it, certain inhalers don't work. The dry powder just gunks up the trach and very little (if any) get into my lungs to work. Regular inhalers work when I use them in my trach. It just gets frustrating having to explain that to every doctor I see at the VA and sometimes they even think I don't need the trach or I am just being non-compliant with my treatment. Oh well. I know what I am doing and what works.

Ahh, the fun of also having to explain why they have to wash the hand sanitizer off before coming into the room to visit me. I just love new doctors. Maybe, after all is said and done they will actually learn something to take on to their practice after they finish their schooling. Most of the docs we see at the VA are interns on rotation at the VA working under a full-time VA doc. I have yet to meet the full time doc, but have seen lots of students!! The doc I saw today said she had learned more about trachs with me than she had before. My new job -- to teach our new doctors about MCS and trachs.

Wow, two months since my last post!! Sorry, I've been kind of busy -- just a few days after my last post I fell and broke my leg. My femur actually. And the doctor thinks that my broken leg may be related to my breathing problems. Yes, we are all interconnected. Breathing problems lead to heavy steroid use which leads to osteoporosis which leads to other things which leads to femur fractures!! Who would have thought. It really sucks sometimes. I really try not to use that word too many times, but it fits so well with this situation. It SUCKS!! Okay, so let me back up and fill you all in on the past two months.

For most people, calling the paramedics is bad enough, but for those of us with MCS, it can be even worse. Not only did I have to allow a bunch of rescue personnel into my home (I think I counted at least 5 at one time), they are going to take me to an antiseptic hospital!! Just think, if the paramedics had been at a fire and still had smoke on their clothes, or they had on lotion or even strong deodorant it can set off a huge asthma attack. And since my home is my "safe place" where I can control the smells that I allow into it, having a bunch of strangers in my house was kind of scary. Then they had to take me out of the house to the ambulance, where I have to get past the exhaust fumes. Then, they took me to a hospital with all of it's wonderful smells!! Let's just say, it's a challenge when you have someone with allergies as severe as mine. Luckily, the worst didn't happen.

Hospitals present their own set of challenges for MCS people. Not only do we have to worry about all the people who work there, but all the sanitizers and antiseptics they have to use to keep it clean we are allergic to!! It's hard to convince all those nurses and techs and everyone else to NOT use hand santizer before entering my room. I actually found it almost easier to make them all wash their hands in plain water after entering my room. I had a big sign on my door saying: "CAUTION: Do not enter if you are wearing lotions, perfumes, hairspray, or anything scented." Well that cuts down on visitors!! It's not too bad. I guess I am just used to it. It also means that the housekeeping staff isn't even allowed to come into my room. Their shoes and clothes usually smell of the cleaning stuff they are using. It also means that sometimes my nurse or aide had to be changed with another because they had worn lotion or perfume or something. It makes it difficult. At least this time they were really good about finding people who didn't have odors to work in my room.

But, I have survived all the trials of hospitals and such and my leg is healing. I have a rod and pins in my leg to hold me together. The good news is - I can't break this bone again!! Of course the kids all wanted to know if we could put magnets on my leg since I have metal in it!! I had to laugh. Just so you know, I tried, they don't stick! Better run for now. More later.

You know, sometimes I wish I could just live in an astronaut's suit. Then I would not have to worry about all the smells people use and wear. The other day at the office, one person decided the kitchen was dirty and needed cleaning -- with bleach and other chemicals. About killed me!! Sometimes people just don't think, and others just don't care. It really frustrates me. I had to leave the building and stay outside for an hour waiting for the office to air out a bit. And even when the air was clearer, I still had trouble breathing. After an asthma attack, it can take several hours to regain all of my strength and ability to breathe "normal".

Then, I went to church on Sunday and too many people were there with perfume on. So, I had to leave and go home again. Sure wish there were "chemical free zones". With other allergies, people are willing to accomodate you, but when you tell them you are allergic to their perfume or cleaning stuff, they think you are nuts!! I don't know how many people will tell me it's their "right" to be able to wear perfume or lotions. Well, what about my rights -- to be able to breathe!!! So, I stay at home a lot to keep away from smelly people. It sometimes makes me feel very alone and isolated. But, I don't have a lot of other choices. At least most of the people who know me know to not use smelly stuff when they are going to be around me. Now, to train the rest of the world that they don't have to use the strongest perfumes and to use them with restraint.

Gosh, where does the month go? Okay, since the air has been so bad I was sick and I guess time just gets away when you are not feeling well. The air is cleaner now and a few antibiotics do wonders!! It's really hard to explain to other who do not have breathing problems how hard it can be. It takes so much energy to just breathe sometimes that you forget everything. When you have breathing problems, you realize how much energy it takes to do simple things -- like eat and digest the food, or just doing the every day things that people normally do. When you can't breathe well, your whole body feels it . . . you are tired all the time, you have trouble concentrating, sleeping, or just thinking. If you have never been short of breath, then consider yourself very blessed. It really is hard!!!! You think, well, I used to be able to do this, why can't I do it now? Other times, you just feel like you are going crazy. Why can't I remember anything? Then, once you get to breathing better you can look back and realize that is why you were so tired or felt so distracted!!

With MCS, it can be even more challenging because no one believes you are having trouble or think you are just faking your breathing problems. I am lucky because I have a great doctor who believes what I say and listens to me, but getting other people to understand my problems can be hard. My brother used to think I was just exaggerating until he watched me turn purple after being exposed to a small amount of perfume. Luckily, I was in the hospital when it happened. Someone had walked by my hospital room with perfume on and the door to my room had been open. It was then that he realized how serious my allergies can be.

It is amazing how many every day items can be hazardous to my health and those with MCS. This week, my car broke down and I had to get a rental to get around town. I had to have the agency roll down all the windows of the car for an hour and also run an ionizer inside the car to try and get rid of all the smells inside the car. The agency had cleaned the car after it had been returned by the previous renter and even though the smells were not strong, they were way more than I could handle. It really makes it hard to do everyday things. Renting a car can be hazardous to your health -- who would have thought that?

PS Boy was I glad to get my car back!!!

Yeah!! It rained today. The air is not clean, but it is a start. Now, we have fog. Fog is okay, but holds all the pollution close to the ground in the fog itself. It is so hard for people who don't understand allergies that just because it rains, it does not mean I can immediately breathe again or even that the air is clean. But, it is better. It will take a few days after the air is cleaned out before I can get all the gunk out of my lungs and breathe easily. Can't wait!!

Okay, I'm back. The past few weeks have been tough. I live in the mountains where you think the air would be good. WRONG!!! We have the worst air in the country right now. So, not only do I have to worry about all the smells associated with Christmas and holidays, but now I can't even go outside!!! It's amazing how people who don't have breathing problems just don't get it. Everyday on the news they announce that the air quality is poor and unhealthy. In fact, you can see the air it is so bad. And yet, I have people ask me, "Is the air bad? I hadn't noticed." Well, duh! When you look out your window and can't see the mountains, what do you think? When the sky is gray, and the sun looks fuzzy, what do you think? It's great air to breathe? Sorry, I had to say that. I have a bit of cabin fever. I have to go out to work, but am exhausted by the end and come straight home and have to rest, no extras!! It also makes me a bit grumpy.

It is amazing how much breathing affects everything you do. When you have to work hard to breathe, other things suffer. It's hard to carry on conversations. Between being a bit short of breath, I also cough a lot when the air is bad. It is one of the symptons of my kind of asthma and MCS. The gunk in the air is just as bad as fragrances and stuff. Many times, I can't even smell the air when it starts to bother me. I keep an eye on the EPA website to know where the pollution levels are. If the pollution levels are high, my tolerence to even low levels of smells is decreased. It really sucks sometimes!

Well, we are expecting the air to start to clear this weekend. Maybe I will start to feel better soon. Don't want to complain, but waaaaaaaaaaaaaaaaa!!