Wednesday, October 30, 2013

PFT Results

I'm absolutely exhausted due to multiple nights of insomnia. I'm also pushing myself in my attempts/commitment to emotional healing. The two are related I'm sure. I've been having nightmares and disturbing dreams for the past couple weeks.

I'm going to therapy as well as 12 Step meetings in an attempt to heal how broken the events of the past 6 years have left me.

There is a very strong LGBT recovering community where I live and its been great to meet people. It's also tricky trying to navigate in-person friendships while having this disease. I'm still trying to find the best way to tell people without sounding like a complete nut job or, eliciting the response "of course you're tired...you've been through a lot". No one has judged me though and for that I'm grateful.

The fact that I'm super skinny right now does give more credence when I say I have a chronic illness which limits the amount of activity I can do. I only tell people I have a chronic illness when I've been invited multiple times to events that I've either had to cancel or I simply do not have the energy for, or if the circumstances/environment might mean passing out (i.e. toxic mold, or crowded hot rooms).

The people that accept that and still continue to call or invite me places are the people I'll ending up being friends with. It's tricky and doesn't help that I'm not the most socially graceful person. I'm told my awkwardness and mild eccentricities are endearing. I don't quite see them that way yet but maybe with time...

I'm continuing to lose weight which is puzzling but other than trying to boost my calories I'm not going to worry about it. I've spoken with enough people with M.E. to know this can be part of the disease.

There's an issue I haven't wanted to deal with because it feels like going down another rabbit hole that I don't quite have the energy to tackle right now. But I need to because its a quality of life issue and because I need to rule out cancer given my family history, low NK cells, a poorly functioning immune system, and high Nagalase levels.

I got the results back from the Pulmonary Function Test. Another unexpected twist in this journey. Luckily I'd saved the results of the previous PFT that I'd had back in 2009 so they had a little bit of a baseline to go on.

My lung's looked okay. However, they want me to see an Ear, Nose, and Throat specialist for more testing to see what's happening with my throat.

I had no idea a pulmonary function test had anything to do with the throat so I did a quick google search and it can yield abnormalities in that area of the body.

Now I understand why the woman (technician) looked so sad and concerned when I left the testing that day.  With the weight loss (I look very, very skinny now), the fatigue, and the results she probably worried about throat cancer.  I would if I were in her shoes. It doesn't help matters much that I smoked over a pack a day of cigarettes for about 15 years or that I used to drink a lot of alcohol both risk factors for throat cancer.

The range of possibilities are varied and can include vocal chord dysfunction, autonomic nerve dysfunction, MCS, as well as more grave ones.
Disorders of laryngeal function may arise as a result of anatomical or neurological abnormalities due to a number of causes. Chronic or slowly progressive airflow obstruction at the level of the larynx may be due to vocal fold polyps or granulomas and tumours, particularly invasive malignancies such as squamous cell carcinomas, lymphomas or thyroid carcinomas. Other aetiologies include papilloma formation leading to internal narrowing in the larynx and trachea and subglottic stenosis or benign thyroid tumours causing extrinsic compression. A significant number of chronic diseases can have laryngeal manifestations including rheumatoid arthritis, lupus, progressive systemic sclerosis, Wegener's granulomatosis and relapsing polychondritis.
It explains a lot though. It explains why my throat closed up in that apartment in El Cerrito and why I'm getting hoarse at times, as well as the shortness of breath.

The increase in sore throats, and swollen lymph nodes all up and down both sides of my neck, under my chin, back and front of neck I dismissed due to an M.E. flare up or tooth issues.

It's also more validation to the fact that I'm not crazy or imagining things or exaggerating. At times I think back to my Kaiser doctor who said to me "whenever I see your name on my appointment book I know there's something wrong". Or the neurologist here who said "you are a credible person plus I know people who suffer from M.E. and know how devastating it is" and "I bet you have a really high pain threshold". To that my response was "I used to think it was a good thing but now I don't". He agreed. 

The problem with having a high pain or discomfort threshold is by the time I show up in a doctor's office things are beyond the mild level (if its a progressive issue). 

I need to see an ENT. I found someone who accepts Medicare. I just need to make the phone call. I'm just a bit too tired to right now. 

1 comment:

Koneil said...

I recommend reading stop the thyroid madness. Your symptoms, especially the hoarseness sound like they coud be thyroid/adrenal related, even if your doctors have always said your thyroid is fine.