The Bubble Girl

This morning I woke up and read a disturbing article.  The FDA has issued a warning about four major medicines for asthma (Advair, Symbicort, Serevent and Foradil.).  I take one of them currently and I have at one time or another been on all of them.

I have chronic serious unresponsive asthma.  I do not respond to the normal asthma protocol, so I have, for the past 12 years, been living on half of the oxygen normal people do.  I have a chronic cough and I am often exhausted.  The medicines I've been diligently taking do nothing but make me fat.  I have gained twenty pounds since I started taking these medications and as I continue taking them it becomes more difficult to keep the weight under control. The FDA has just issued a serious warning on the medicine I  take because it's dangerous and people are dying from taking it.  Not only does it make me fat, it just might kill me.  Fabulous.

My asthma doctor threw his hands up in the air recently.  We've tested for everything he can imagine and we've tried all of the available medicines for asthmatics.  I have seen lung doctors and specialists and had endless tests.  No one has answers.  Nothing is working.  So now, finally, we are trying to get me to the top asthma and lung center in the country.  If we can work it out, I may discover what is really going on with me and although that may not mean concrete solutions, it will feel good to finally be able to point to something and say, "That's it." and then to be able to visualize 'it' disappearing.  If we can't work it out, I'm simply not sure what comes next, but I'll be damned if I'm going to give up seeking answers.

I have learned a lot on this journey and most of what I have learned is that if you want to get better, you simply can't rely on your doctors.  You have to do research, you have to be engaged, you have to show up with questions, you have to fight every day for better answers.  Having a chronic illness is like going into combat, if you're not willing to fight for your life, you're probably not going to survive.  Though none of us is getting out of here alive, I've got far too much to do for an early check out.

Having this condition presents challenges to me on a daily basis.  It's harder for me to do most of the things that other people take for granted. I can't run anymore, ride bikes anymore...just a regular hike or a climb up a staircase leaves me winded.  I cough often, which makes other people incredibly uncomfortable and nervous. In fact, this chronic cough is the worst part of my illness. It creates a barrier between me and the people I love and with people in general.  It makes it tough to chat on the phone, because I'm often having to rush to hang up so I don't start coughing in someone's ear.  It means that I sometimes feel incredibly depressed and alone and I have to grab my pom poms and cheer myself back up. It means that a whiff of perfume or a scented candle or a walk past the detergent aisle at the grocery store sends me into an instant asthma attack.  It means that my favorite season of spring attacks me with the ferocity of a sex starved tiger because I've got a host of allergies too.  It's like having an invisible handicap, because I look fine and people are baffled when I suddenly and inexplicably go into full blown asthma mode.  Just call me Camille.

I joke with my husband that I need a plastic bubble.  We play the REM song The Wrong Child about the bubble boy a lot around here.  "I'm not supposed to be like this...but it's okayyyy."

Hell if you can't laugh, what have you got?

It means that as a professional craft industry designer, I can't work with many mediums because they can not be in my home.  It's frustrating because I'd love to work with resins and spray paints and smelly adhesives, but I can not.  It means that going to the big trade shows becomes a stealth mission.  I have to avoid any booths with odiferous or airborne products or I'm scouting out the restroom and hoping no one recognizes me as I beeline for a stall so I can hack up a lung.

I don't talk about this much.  I don't whine about this much.  I don't want to give it that much power.  I don't want people to think I can't perform or produce, because I can and I do as anyone who knows me can attest.  I have an iron will.  I refuse to give in to this.  There are far worse things in the world.  It's just an incredibly frustrating situation and it's scary when the drugs you're taking are so dangerous the FDA is nervous about them.  I've tried alternate medicines too, so please don't start listing them.  I have tried them all.  I have meditated, medicated, breathed deeply, removed heavy metals, taken endless supplements and potions and oils and drops...bent, bowed, prayed and hoped.

So now, maybe, if all goes well, I'll finally get some answers. I want my life back.

Yes, it's perhaps risky for me to share this here.  Perhaps this is too much transparency, but perhaps it will help someone else who also struggles on a daily basis with a chronic condition to know that they do not have to give into it and that even though it may feel like it, they are not alone.  That if you keep making noise, eventually someone will hear you.  We can create joy and abundance and success and we can survive anything.  Everyone of of us is stronger than we know.

Love
Madge