They won't make me feel negligent

1. Arianna's reflux is still a serious problem
2. My neck, apparently, can't be helped without serious neck surgery
3. My leg surgery is a much bigger deal than I thought
   

Yesterday morning as I was feeding Arianna breakfast she was gagging. She does this on certain textures but then she threw up the entire 6 oz. of granola. This is not a good thing. Her reflux is still a problem - she's out grown her Axid dose and her pediatrician says she's at the FDA limit and now has to go on something stronger. I figured that much but he does not feel comfortable handling her reflux and wants her to go back to GI. This is fine, they should be 'in the loop' regarding her slow weight gain/loss and reflux. The bigger problem was that I didn't feel they were 'good'. They dismissed her at 5 months old, taking her off all her reflux medication. Two weeks later she stopped eating (this was last September) and for the next 4 months we struggled to get her to gain weight as we adjusted her Axid dose (as prescribed by her pediatrician). It'll take weeks to get an appointment and I hate to stall her progress but that seems to be the preemie time line... wait for nothing to happen. sigh.

Yesterday afternoon I had an appointment with my orthopedic surgeon regarding my compartment syndrome. I had my mom drive the 30 min. to my house to watch Arianna and then I drove the 45 min. to the appointment. I arrived a few minutes before 11:30 and filled out paper work. I told them my daughter had played with my wallet and I accidentally left it at home (this is the truth) so I didn't have a way to pay my copay. They told me they couldn't see me without my copay and needed to reschedule. They needed to reschedule for a freakin' $10 copay?? It took 3 weeks to make that appointment. I was so mad I just told the secretary that I'd make an appointment with someone else and walked out before she could say anything.

I called up another orthopedic group and got an appointment for 3 o'clock that afternoon - AWESOME! The most ironic part is that they are just one block down from the other office I was at that morning. I arrived about 15 minutes ahead of time and filled out paper work and waited an additional 30 minutes in a room for someone to show up.

The male doctor I met with was OLD. I have a thing about doctor gender. All of the experiences I have had with male doctors (with the exception of 2) has been extremely negative. The two cardiologists I saw that completely missed my Long QT syndrome and refused to treat me could have cost me my life. It wasn't until a FEMALE cardiologist stepped in that I got the treatment I deserved. The cardiologists I had after her were both male and both excellent, but on a whole I have not had good luck with male doctors. When I make appointments I try to make them with female doctors.

Anyway, this doctor even told me he wouldn't be following me because he's retiring soon. I explained my compartment syndrome and showed him my legs - which I always thought looked fine. He started by saying I had to be the worst case of compartment syndrome he has seen outside of leg fractures and that he couldn't understand why I had let years go between the surgeries on my legs.

I explained the delays; 1. I've had this for years and am used to it, its not urgent to me. 2. After my first surgery I left my job to return to school full time and lost my insurance. My husbands insurance wouldn't cover the surgery. 3. After I had a full time job and planned on having the surgery I became pregnant and the surgeon wouldn't do it while i was pregnant despite several pleas from my maternal medicine doctor.

He then said he wanted another doctor to meet me so I waited for another 20 minutes for a new doctor to arrive who looked at my calves and said he'll see me in two weeks at the office that was closer to my home (ya!!). After he left the old doctor was there filling out some paperwork - I used that opportunity to ask about my neck. I explained how the problems happened, two car accidents (not my fault) and my skydiving and how I treated it (chiropractic).

Well, boy did I open the flood gates. I've been dealing with my neck problems for 3 years - too long he said. I probably did more damage to my neck by going to a chiropractor and at this point there is probably nothing that can be done outside of major neck surgery and I need to decide what is more important, my leg or my neck. He said they'd have to do an MRI and I said I can't have one because of my defibrillator and his eyes got big and he said then we'll do CT Scans.

The way he was saying this was so crude, I could feel the anger building up inside of me - the way he was talking to me was like I was 3 and had been very negligent to my body. After the other office that morning I wanted to just get up and leave but kept my composure.

He finished it with the comment that made me cry: "You have a lot of things wrong with you for such a little girl. Yes, a little girl". I think he knew what he said was wrong as he just got up and left without saying a word.

I had to pull my jaw off the floor after he left and tried to hold back tears.

Quality of life is a HUGE facet of my life - I do my best to make due with what I have.

Yes, I have a heart defect that could kill me - I'm reminded of it every day I check my defibrillator with a magnet to ensure its still working. To keep me 'balanced' I stretch the boundaries of my disorder by skydiving and exercising regularly - things many people with LQTS refrain from doing. I went through months of group therapy to try and keep me thinking positively about my disorder rather than dwelling on my possible death.

Yes, I have compartment syndrome that makes walking painful - but I can do any other exercise that doesn't require the flexing of my foot - so I ride bikes and use an elliptical machine regularly without problem. I know what I can and can't do as a result of my legs and don't let that stop me.

Yes I get daily headaches and my neck is a total mess but I take ibuprofen once a day and it helps. I don't do a lot of head twisting unless necessary (I rely on my car mirrors heavily). I've resigned myself to not being able to have full use of my neck shoulders for the remainder of my life - seriously.

But to be told that I'm super messed up for someone my age? I don't think so.

I had a conversation with my cardiologist about this at my last appointment. I told him I was having trouble getting life insurance and he told me he'd be more than happy to write a letter to the insurance company telling them that I have a regular full life expectancy.

Does that mean its a compromised life? I don't know.

A lot of this aligns with our decision to not resuscitate our preemie if they are born before 26 weeks. We get a lot of flack for this but I have too much experience with compromises to individual lifestyle to take that risk. I have the added bonus of understanding what its like to 'grow up being a preemie'. My mother has bi-polar and will never live on her own - I know that when my father dies I will be left with taking care of her. I am already far too involved in the decisions she makes but I understand without my input she would make bad decisions that hurt her (like her having several drinks at my grandmother's birthday party this weekend and getting hammered). People born prematurely are at a higher average of having mental problems which are not handled well by our society... It's not that we wouldn't deal with it as parents either. We would and could because they're our child. The majority go through a lot of pain and suffering and I would hate to see them go through all of that and still die. Just the thought brings tears to my eyes.

Thankfully the majority of 'pregnant after preemie' moms that I've met have had their second child either later than their first or full term. I can only hope...

I think I'll take my battered and broken 28 year old body back to work now...