Health

I woke up this morning with a little bit of a sore throat, sore joints, and a bit of a sore attitude thank you very much. I know that when my attitude stinks, generally there's something looming around the corner.

Toward the 2pm mark today, I was feeling more sore in all the places that I was just a little bit sore earlier in the day. I decided to go home and finish my work in the comfort of flannel.

Now my joints are so sore that it hurts to even type. So, with that, I bid you a fond farewell for the evening. I must now keep company with my new lover, the flu.

Good thing I bought mistletoe today....

I think I was practicing being a zombie this weekend. Or maybe a newborn. You decide.

Friday: Awake 16 hours, alseep 11.5 hours

Saturday: Awake 14 hours, asleep 10 hours

Sunday: Awake 7 hours, asleep 17 hours (several very sound naps during the day).

So in three days I was awake for 37 hours and asleep for just under 40 hours.

Thank goodness I have Prince Charming to wake me up....

I was stressed over nothing. My doctor was just telling me things I already knew. She just didn't know that I knew! She believes that I'm only liver affected, but there is a small chance that my lungs could be affected as well. Frankly, I'm thankful for that because the idea of emphysema scared me to death. I always kind of assumed the liver disease would continue to progress, so cirrhosis doesn't scare me as much.

My doctor told me that she's never had a patient with this disease (it's pretty rare) so she's sending me to a liver specialist to whom she's already consulted about my history. She thinks that he'll probably schedule a liver biopsy. But I'll know more in October when I see him.

This may sound silly, but it's kind of a relief to finally know what's wrong with me, even though it's pretty serious. It's been 20 years of not knowing; so I never knew if it was something I was doing, or what I could possibly do that would make it worse. That's pretty hard to live with. Now I know. That's a relief.

Amazing that a small town doctor found this, after I've been to some of the best gastro's out there, huh? I gave her a hug and thanked her for being so thorough. She seemed very pleased that I recognized her efforts. She wants my kids to get tested, especially after asking about their health history. It makes me sad that I've potentially passed this on.

I think this is the last of these scary posts. Now I can move on to being my normal smartass self.

I finally got real with my husband tonight. I broke down (I sure hope I don't have swollen eyes for work tomorrow... ) I've been holding back what scares me about this whole thing. What scares me the most is not being the person he fell in love with. I feel that he fell in love with a vibrant, independent, happy person. I told him that right now I wish I were single and had not brought him into this mess. He hasn't been with me long enough to have to deal with *this*. I want to give him a "get out of jail free" card. He won't take it. I pray that I don't push it.

One side of me knows that I'm just borrowing trouble. I mean, the doctor hasn't even talked to me yet. The other side of me is like a boy scout. Always prepared. I want to prepare my husband for what could happen. I want to prepare myself.

I think I've run through every scenario in my head. It doesn't help that his dad has emphysema and is hooked up to oxygen 24/7. It doesn't help that I see his dad struggling to just go from his car to our home. I am very familiar with this *thing*. I exchanged email messages with his dad today. I asked him how he found out about his disease. His came from smoking. I've never touched a cigarette in my life. Ok, once I did- but I didn't light it. I was cruising with my roomate and we thought it would look cool if we had cigs in our mouths. Silly 17 year old girls!

He told me he'd rather have the lung thing than the liver thing. I told him that I'd rather have the liver thing than the lung thing. I'm very familiar with with the liver thing. I've lived it for 20 years. I've experienced as much physical pain as I think one could possibly have. But at least I could breathe. I can't imagine not being able to breathe. It makes me claustrophobic thinking about it even now.

I remember being a little girl living in Los Angeles. The smog got to me so bad that I could only take short little breaths. I laid on the couch and worked very hard to breathe on those smoggy days. I can only imagine that this is what it'll feel like. I can still rememer it enough to know that I just don't want to go there. I don't want to live like that.

I've been having small panic attacks the last few days. I can't take a full breath when I have these panic attacks. This happens when I'm very stressed out. Yeah, I know I could alleviate the whole thing by allowing myself to put work second. I should have gone to the doctor on Tuesday.

Know what? I think I intentionally put this off. I need to quit being a work martyr. Part of me is avoiding the truth. One of my friends gave me an ostrich beanie baby one time. She said that it reminded her of me. I'm always burying my head in the sand. Maybe I was an ostrich when the nurse tried to schedule an appointment the next day.

Two more days. Breathe...

I am glad that my day is full of meetings tomorrow. It'll keep my mind off of things. I'm good at that. I had a therapist that told me that I have lots of boxes in my brain. Put *this* away in this box and pull *this* out of that box. That's how I cope. I guess living the life I've lived has been a gift in times like this. I've learned some great coping (or should I say ignoring?) skills.

It's late. My husband is asleep. I can't sleep. I wonder why.... I should at least try. Tomorrow will be a long day.

This isn't going to be one of those "risible" posts. I'm having anxiety over the unknown.

I've had this liver "thing" for about 20 years now. When I was first diagnosed I was told that they didn't know what caused it, but I'd feel like I had the flu all the time, then told to go live my life. I wasn't very satisfied with that. I was on the internet searching for something to explain this for days and days. Some things fit, some things didn't. I'd give up after a while.

Then, when  I'd have to get a new doctor (I moved, doctor moved, doctor referral, etc.) and the new doctors would test for things and I'd go through the internet research process all over again. The new doctors would always come to the same conclusion as the first one.

One doctor even took my galbladder out thinking that would solve the problem. It didn't. So, 20 years of this. Fast forward to now.

I've just recently gotten over a 3 week liver flare-up. Worst I've had in years, and I ended up in the ER 3 weeks ago. The ER doctor recommended that I follow up with my doctor. This is a new doctor to me because I've moved. So, she ran labs. No surprise, they came back bad. Ran more labs, this time wanted me to fast.

I was kind of rolling my eyes at the whole thing because every new doctor I get has to run all the tests for themselves. She noticed something in my labs that has never been looked at. I have an extremely low level of something called Alpha-1 antitrypsin. Nobody has ever looked into this before or even done a fasting blood test. I'd never heard of it, so came home and looked it up.

I'm literally stunned at how obvious this seems. There is a disease called Alpha-1 antitrypsin deficiency. It was very easy to find on Google. In a nutshell it's a genetic defect that causes liver and lung disease. If bad enough it can eventually cause cirrhosis and emphysema. According to everything that I'm reading, my health history fits this to a T. I have never associated my liver problems with lung problems that I've also been plagued with. Now those pieces of the puzzle fit together.

The doctor ordered a genotyping test. This is the test that will show what my chances are of developing cirrhosis or emphysema or both. That was almost three weeks ago. I started to relax because I thought since I hadn't heard from the doctor, it came back ok. Not so.

The doctor was on vacation all this time. The nurse just called on Monday and said that my doctor wants to discuss my results with me in person and discuss my options. She didn't want to discuss over the phone. She wanted me to come in the next day, but I have huge commitments at work that I couldn't get out of. I can't come in until Friday. So, now I wait.