Sunday, January 26, 2014

No Hot Water, Just a Tiny Violin

Notice the steam coming off the water? That was my week. No hot water, sponge baths in this tiny bathroom sink. It was a good reminder that we live in an ease-filled world that our ancestors could not imagine.

I owe everyone at No Longer Quivering a huge "I'm Sorry" because over the last three months I've struggled to update, updated at different times and updated on random days instead of my used to be every day at the exact same time. Dear readers of NLQ I've been a bad admin.

What happened? Once I started working at the children's residential treatment facility my asthma and allergies went into overdrive. If you notice the day time I'm writing this you'll realize I've even skipped church. Didn't go into work one day last week because of the way I felt.

The stupid of it is that I have probably made myself worse by going to work there a few hours a week. I just wanted to bring in a few extra household dollars while we were being pinched by paying for my youngest daughter's last year at university. It's been expensive.

The double stupid is that I probably made myself much much worse by following what I was advised at my old church. I'm sure it's what took my health from up and down to freaking insane. A 'Healer' came to the old church and told me that my asthma was caused by my arms being uneven and out of alignment with my spine. After he ordered my arm to grow and come into alignment I was told to demonstrate my faith in my healing to God by throwing away my CPAP machine and my medications

I did. And it worked, for awhile, like two years. But when it came roaring back worst than ever I was disillusioned with the idea of healing and healers.

Hitting rock bottom physically occurred right around the same time I left the old church. Somehow I ended up in the bushes outside the clinic I worked for throwing up and being unable to breath merely because someone used an aerosol around me. The head doctor, Dr. Norman Maroner of Warrenton, fired me, claiming I was making up 'drama'. He even told my husband that I was 'insane' because no one is that allergic to aerosol sprayers.

That's not what the hospital report says from later that same day. I went to another hospital other than the one he was practicing at on my way home. It was severe allergic asthma, which took me on the journey that ended up with me on Xolair injections for the last six years because they were the only thing tried that actually worked well. Even higher doses of Methotrexate didn't do much good. I'd already run the gamut of traditional asthma drugs and only developed a steroid intolerance/allergy.

This month my critical care pulmo closed up shop because of the requirements of the Affordable Care Act was placing on individual provider practices. I went doctor shopping and found an experienced pulmo in a nearby town, so I wouldn't have to drive all the way to DC or Charlottesville/UVA.

Friday I had my first appointment and walked away with more questions than answers. She was horrified I've been on Xolair that many years since no one knows what the long term will be and wants me to consider having lung ablation for asthma treatment called a Bronchial Thermoplasty. From what I'm reading they insert a scope down in the bronchial tubes and use radio waves to scar the smooth muscle to stay open all the time.  It burns away the asthma-damaged thickened walls.

I'm on the fence about it but I am taking a break from the Xolair injections.

Had a complete physical and many tests while I was there. My blood pressure, cholesterol levels and sugar levels were abnormally normal for someone my age, hee. But my oxygen levels and pulmonary function have fallen to the edge of normal, there's been deterioration of the numbers.

The bad things about the new doctor?  She doesn't give Xolair injections and she's rarely encountered much less treated someone with this type of immune system illness.

The good things about this doctor? She'll keep writing my prescriptions and says that I'm properly medicated for someone allergic to just about everything including meds. Plus I'm being referred to Johns Hopkins for evaluation and treatment of my allergies and asthma and likely will be in one of their research programs. Getting referred to the experts is something that I've needed to have done for a long time now. That can only be good.

I staggered away from the new doctor's office missing nine tubes of blood and with the beginnings of a migraine but I feel hopeful. She thinks that the reason I started having problems three months ago at work is that I've been exposed to dangerous molds. That's the reason for all the blood they took, I'm getting tested for just about every type of mold borne illness you can imagine. I'm likely going to have to leave the treatment center because there is huge amounts of mold there. I personally witnessed the maintenance crew pull up the wooden flooring in two of the cottages only to see the sub flooring was covered with black mold. They didn't remove the subflooring, they painted over the mold.

That can't be healthy for anyone.

We shall see.

I'm really not trying to play the world's tiniest violin here and bore you to tears with my health issues. Mostly I wrote down about my visit to have a place to look back and see what happened that day and what conversations need to happen next with my new doctor. However, if you have any advice on which way I should go with the options please let me know in the comments. I would appreciate some feedback.

Guess I'm stuck with ten thousand dollars in Xolair!





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