Just a week ago...

my husband and I were on the phone with Delta changing airline tickets. Tonight I'm sitting in my parents kitchen. Yesterday was the start of a 7 week trip away from home. This may be boring to some and others already know most of it but there are a few who wanted to know more. We'll start at the beginning...

I was 14 and started having some different health problems. After going to a hand full of different doctors and playing guinea pig for a while they found out I had Hyperthyroidism. Due to my lack of knowledge about hyperthyroidism and the naive resolution to just do what the doctor said (and ignoring strong impressions not to) I was treated with radio active iodine and was made to have hypothyroidism (which I still currently have). From that point on my body just kind of spiraled down to what some of you might be able to understand as feeling like I had mono ( a BAD case) or chronic fatigue. But I had neither. Then began the quest to find out what I actually had. So I went to quite a few more doctors and the best answer I got was from an Internist who after taking vials and vials and vials and vials (you get the point, right?) of blood to do who knows how many tests told me that it was evident that I had some sort of auto immune problem and that he didn't know what it was. At my lowest I was sleeping 16 hours a day and still waking up tired. My body ached like sore muscles from a big workout the day before, except all I did was sit around at home and watch tv. My brain was mush. It was just as slow as my body was. It was hugely frustrating. I just wanted to be normal. I wanted to be able to go to school. I wanted to go back to worrying about what I had to wear or what I was gonna do on the weekend. I wanted someone to understand. I spent my days wearing PJs and loafing around the house.

My mom worried about my constantly. I really didn't understand how scary it was for her and I'm just starting to. As much as I wanted to know what was wrong she wanted to know even more. She wanted to fix it for me and she did whatever she could and more.

At that point in my life I remember all I wanted was a name. I wanted a name to know what was wrong with me. When countless people would try to find out all they wanted was a name. They didn't want a list of symptoms and that's all really I had to give. There was and is no short answer (obviously, or there would be nothing to read here). I really struggled for a while with this. I guess I just wanted to be in the mold. The doctors wanted to put me in a mold too. The last mainstream doctor I went to at that time told me I was a depressed insomniac and handed me a prescription for antidepressants and sleeping pills. I went home and decided I wasn't going to be a guinea pig any longer. I knew I wasn't what the doctor said. That's when we started to look for another option.

The first non-mainstream doctor I went to was about an 8 hour drive away. I don't remember a whole lot about what he did and why. What he did ended up not helping but it was great to finally see a doctor that wanted to help solve my problem and not just write a prescription and be on his way. The next doctor actually found me.

I was at a friend's little brothers party and one of her little brother's friends parents were there. When the doctor saw me he asked my friend's mom who I was and what was wrong with me. She knew my story and filled him in. She helped us get in contact with him and he helped me to get better. I don't fully understand what he does but I don't understand how x rays work or how drugs are compounded or how chemotherapy works. I know that it works. After I started getting treated I was soon able to go back to school, to start dancing again and being "normal". It felt really good. It's lasted about 6 years give or take with just a few visits a year after moving cross country. But since January things have gone downhill.

My last visit home I was selfish and chose to spend time with my family instead of going to the doctor. Since January things have slowly gotten worse and I was desperately hanging on trying to wait until my next trip in May. It was all a vain attempt at being "normal". My body finally gave out and my husband saw the worst of it. He realized I needed to make the trip and that brought us to our phone call a week ago. We'll be apart for 5 weeks. I know it's really hard on him to do that. He does not do well alone after a week away. It is a huge sacrifice on his part and I am so grateful for him. I have such a good husband and he has taken such good care of me this past week. I got to the point that I didn't have the energy to take care of my two year old even at the most basic level. All the old symptoms are back.

It's good to finally have it out in the open. Like I said I've been trying to keep it together but it's never worked for me to push my body. It makes me feel really dumb because most people don't understand. Only a few can actually see when I feel bad. To the rest I just look like a dumb lazy mom.

I'm not gonna' lie it's been really hard. I'm grateful every day for the things I've learned through all of this. I'm grateful for all of the love and support I have back home and for all the people who came together to care for me and BL so we could spend an extra few days with BW. I'm grateful for the wonderful parents I have to take care of me and BL. I'm grateful for my special sister stuck in the sandbox with me. I love her dearly. Without her I wouldn't have been able to get through the last week. She showed up on my doorstep on Wednesday afternoon and I asked her "what are you doing here?" (she should have been at work) and her response was "I'm here because you need me (or something to that extent) and I'm coming tomorrow and the next day." I can't explain what I relief it was to have here there and tell me that.

There is so much riding on the line this time. I'm not just a teenage girl anymore. I'm a wife and mother. I can't afford to be down and I'm terribly afraid I won't be able to be a good mom. There is so much on my mind right now and it's been a very emotional week. I love you all. Thank you all for your support.




I hope I don't at all seem to harp on mainstream docs. They are necessary and there are some wonderful doctors out there. I do however feel that they need to learn that it's okay for them to say "I don't know what's wrong with you" or to accept something that's new or different. I'm so glad I found BL's pediatrician. She's actually said "I don't know" at times and I really respect that about her. She respects the decisions I make which is awesome because ultimately we're responsible for our health decisions and not the doctor. We live with it, they don't. I'll leave it at that. I've probably already said too much because my emotions are really raw right now.