Thursday, March 31, 2011

And the Hits Just Keep Coming

So on Monday my great-aunt Tommie passed away. Then on Wednesday my great-aunt Nora had heart problems that put her in the ICU. Then last night, my dad called and told me that my great-aunt Clara had a stroke and was also in the ICU. Two of my Grandma's sisters in ICU and her sister-in-law passed away. My Grandma is 93. I am really worried about how this news will impact her. My Aunt Clara and my Grandma are very close. Aunt Clara lived about a mile from my Grandma her whole life. They go to the same church. Aunt Clara and Uncle Harold (who passed away a few years ago) always sat in the pew right behind us. I think this news right after the first two tramatic events may be too much for my poor Grandma. She is my last remaining grandparent. If I loose her it will be like loosing my Grandpa all over again.

And the thought that keeps going through my head is that if I loose her now, she will never get to know any babies that I might have in the future. One of my big reasons to push for having a baby now was so that my Grandma would get to know our baby. I can't stand the thought that it may not work out that way.

Bad things happen in threes right? We have had our three (and in 3 days no less). Please let us be finished!

Tuesday, March 29, 2011

Still waiting...

Not much is happening here in my IF world. I'm still waiting for AF. I don't like being in a holding pattern.

In the rest of my world, things are not so good. My great aunt Tommie passed away last night. My family is one of the few left out there that stays in touch that far out. My grandma is the oldest of nine kids. Aunt Tommie is her little brother's wife. Leon and Tommie have been married for over 60 years. She is one of the sweetest people I have ever known. We will all miss her. I hate that I live so far away from my family, that I will not be able to go to the funeral.

Friday, March 25, 2011

Ambushed by Infants

I spent the evening at a friend's bbq. I know that bbqs are family things and babies aren't uncommon, but my friend is not a kid person (ironic since she is 6 months preggo). Apparently since she is now pregnant, all of her work friends decided to bring their kids. Usually at her house, its adults only. We drink wine and play fooseball (in this house fooseball is a bigger deal than religion. There is a bracket and your standings are saved from previous tournaments). This time it was tea and kids. I walked in expecting around 15-20 adults, wine and games. Instead I was ambushed by infants. 6 of them! Plus 3 preggo ladies! I had to get out of there. But shes by best friend around here. So I had to stay for several hours. It was torture. The people without babies had older kids. There was a table of few non-parents. I know for sure that at least one couple has had IF issues. I couldn't help wondering if she was having as hard of a time as me.

So now I'm home with my wine (didn't even open the bottle at the bbq). The hubby gets back from Utah tomorrow. I have an appointment at a salon to get a new hair cut. And we are gonna start rebuilding our back fence so we can get a dog. I keep reminding myself that lots of people have full and happy lives without kids.

Hurry UP!!!

I am very impatiently waiting for Aunt Flo (AF). I took Provera for the 5 days ending this past Sunday. In the past I started two days later. But I am on day 5 now. I really want to hurry up and start. I want to move on to the next step. I can't try Letrozole til I get my dang period!

I am not optimistic about Letrozole so I want to hurry up and get it overwith. The waiting around for you body to do what it should do on its own is by far the most frustrating part of this whole process (but I reserve the right to be most annoyed by something else tomorrow).

And on another note, thank you all for your lovely comments about my future step-mom's comments. I got lots of smiles from them!

Wednesday, March 23, 2011

Hmmm.....

I was sitting here trying to come up with something to blog about when I realized "Wow, I feel physically good and I'm not weepy or angry!" Who knew it was possible? I'm actually having a pretty good day. It feels so strange.

I never realized how boring my life can be when I am not grumpy or upset!

I called my dad last night. I don't talk to him that often since I have to talk to his fiancee (we will call her K) everytime I call (unless I time it just right so he is in the truck on his way home from work). Don't get me wrong, I don't really dislike her, I just don't have the energy to talk to her very much.

I wanted to let my dad know that K may think I was a bit abrupt with her in an email I sent recently. She send me an announcement for the birth of her daughter's (we will call her S) newest son. I didn't take the announcement well so my response was "congrats" and thats it. K takes things personally. So I wanted to prevent hurt feelings by telling my dad whats going on in our lives and letting him know that baby stuff is hard to take right now (especially babies that I know won't be well cared for).

He knew we were having trouble, but didn't know the extent. So I filled him in. He was speachless. He even sounded a bit choked up.  Then of course he wanted me to tell K all about it. And whats the first thing out of her mouth? "Relax, it will happen when God wants it to happen." Cause God wanted your loser kid to spawn before me? That makes me feel so much better (insert sarcasm here!).

But at least I don't have to call them again for a couple of months!

Monday, March 21, 2011

"No there is too much. Let me sum up."

Welcome ICLW'ers! If you caught the Princess Bride quote give yourself two points! So here I go with the summing it up.

The hubby & I have been TCC for about a year and a half. We had originally planned to do IVF because as a child I was diagnosed with Charcot-Marie-Tooth's disease (a terrible disease that is related to Muscular Dystrophy). We chose IVF because we could have the embryos screened for CMT. This disease gets worse each generation and our kids would have a 50% chance of having it. So I did genetic testing and found out that I had been misdiagnosed 20 years ago. No CMT.

But I do have PCOS. So after a year of trying on our own we went to an RE and started the long process, beginning with Clomid. I don't react to Clomid at all so now we are on to Letrozole. I just finished Provera and will start Letrozole in a few days.

So there is the summary of my TCC journey so far.

Aside from that, I am feeling quite crummy. Provera & I don't get along. Plus my hubby is on his way to Moab, UT for a jeeping trip with his brother & grandpa. So I am alone for the week. Normally I don't mind being alone for a little while, but my current state of mind is not so good. Provera seems to give me lots of doubts. I know its just the hormones, but even knowing that, its hard to think positive. So its a good week for ICLW. I can read lots of new blogs and keep myself occupied!

Sunday, March 20, 2011

Dangers of the Internet

I am having a lot of trouble with the internet today. Facebook brought the birth announcement of a friend from college (I'm very happy for her because she lost a baby a few years ago and I know how much she wanted this baby), but it is still hard. My cousin posted the first picture of her baby girl. And I got a birth announcement from my future step-mom for her new grandbaby. Her total loser daughter just popped out her second. The first two things gave me a twinge. But the third really hurt. The first two babies are both little girls who have been wanted for a long time. The third (a boy) was an accident due totally to the face that this girl can't be bothered to take birth control and seems to lack the ability to keep her legs together. The father is married to some other woman. What kind of lives will her two sons have?

Its this that makes me so frustrated!

Saturday, March 19, 2011

Hubby's 30th

So the hubby turns 30 tomorrow. He is taking it very well. We are having a get together tonight to celebrate before he heads off to Moab, UT with his brother and grandfather on Monday. I'm pretty sure I just burned his birthday cake. I'm not sure that being alone this next week is going to be a good thing. Luckily I finish my Provera tomorrow. Its making me terribly grumpy and keeps messing with my stomach.

I just want to be done with the meds and find out if the Letrozole will actually work. I'm not feeling very happy or optimistic at the moment. Can you tell?

Thursday, March 17, 2011

Costs for Infertility Treatments So Far

11/17/2010 Baseline Ultrasound $198.18
  Ins. Covers Part Pre-diagnosis with IF  
2/9/2011 Metformin $8.00
  Ins. Covers  
2/11/2011 Ultrasound for Follicle Check $271.30
  No Ins.  
2/11/2011 Bloodwork $50.01
  Some Ins Coverage  
2/11/2011 Clomid $9.00
  No Ins.  
2/19/2011 Ultrasound for Follicle Check $236.25
  No Ins.  
2/19/2011 Clomid $18.00
  No Ins.  
2/21/2011 Ultrasound for Follicle Check $236.25
  No Ins.  
2/22/2011 Insemination $273.75
  No Ins.  
3/9/2011 Metformin $8.00
  Ins. Covers  
3/9/2011 Ultrasound   $45.50
  Ins. Covers  
3/15/2011 Provera $2.50
  Ins. Covers  
4/11/2011 Ultrasound $203.93
  No Ins.  
4/15/2011 Ultrasound $45.50
  Ins. Cover  
4/29/2011 BCP $15.00
  Ins. Covers  
4/29/2011 Doxycycline (Antibiotic) $2.35
  Ins. Covers  
5/18/2011 Halo S/A & Hysteroscopy $274.36
  Ins. Covers some of Hyst, but none of Halo  
7/1/2011 IVF Meds - Approx. May Change $2,385.00
  No Ins.  
7/6/2011 IVF & ICSI - 1 Fresh & 1 Frozen Cycle $14,766.63
  No Ins. - Financed through ARC  
     
  Total So Far $19,049.51

Helpful Friends

I am very thankful for some wonderful friends who visited us this week. The lovely H&G came all the way from Texas (I know its a neighboring state, but if you know TX & NM you know that can be a 2 day drive). It allowed me to have a few days where I didn't have to think about IF or any of the stuff that goes along with it. Now that they are back in TX, I started my Provera to get ready for my upcoming cycle with Letrozole (aka Femara).

As usual with Provera, I can barely keep my eyes open and my stomach has decided to rebel against my body. Glad its only for 5 days! I am hoping that Letrozole will have less side effects for me than Clomid. I have discovered that if a side effect is listed, I will likely get it. My RE says that Letrozole has less side effects than Clomid. Clomid messed up my stomach and made my terribly moody and weepy. I even burst into tears trying to pick out an outfit to go to a hockey game. A t-shirt would work, but with the Clomid in my system, I just couldn't handle it.

I am used to the stomach issues, since Metformin has been messing with my stomach for years. Its not as bad as it used to be now that they have the extended release pills.

My RE wants me to come back on CD 12 no matter what, just to see if the Letrozole is having any effect. Since Clomid didn't, we aren't sure if Letrozole will.  If not, we may have to jump straight to IVF. I'm really hopeful that we don't have to do that. But while I'm thinking about it, I am going to make a chart with the costs of treatments so far. I think having a better idea of the costs going in would have been super helpful. So I'm off to make a chart!

Tuesday, March 15, 2011

Thanks to all of you IF Bloggers

I want to take a moment to say thanks to everyone out there who has any type of Infertitlty/PCOS blog. It is SO wonderful to know that I am not alone and that I am not crazy. I feel completely obsessed with all of these issues. I find myself spending hours studying research papers. Hours reading blogs. I am very glad to know that lots of other women do the same thing.

So thanks and keep up the great blogging. Thanks for helping me feel a bit more normal.

Monday, March 14, 2011

Surrounded by Pregnancy

I feel as though I am surrouned by pregnancy. Am I just noticing it more because I can't seem to make it happen for myself? Am I just at the age where all of my friends are getting pregnant? I'm almost 29.

My dad's fiancee's daughter is about to pop with her 2nd. She didn't want or plan either. I have no clue if they have the same father. My dad & his fiancee will probably end up raising both kids. She openly says that she wishes she was able to have her tubes tied, but in Texas you must have 3 kids or be over 25 (don't get me started on the idiocy of this rule!). She isn't even 22 yet. She doesn't have the mental fortitude it would require to take a pill each day. I am to the point of offering to pay for one of those implantable birth control devices. Someone has to stop this.

I also have a cousin who has two already. She is only 6 months younger than me so 2 kids doesn't seem like a big deal til you learn that your oldest is almost 11. She is schitzophrenic. It would be best for all involved if she didn't reproduce. I cannot even imagine the horror of having her for a mom. The last time I saw her was when I went to my aunt's (her mom's) house to pick up my Grandma. It was her nephew's birthday. My grandma came over for the party. She and her sister got in a fight because she couldn't handle the fact that she wasn't getting all of the attention. She was jealous of a one year old. The fight got physical and she pushed a table at her sister, but my grandma was in the way. I had to take my grandma to the ER. She had the very thin skin of the elderly and the table scraped her arm so she had a big open sore. It took MONTHS to heal. How can someone who would be so jealous of a baby that they would hurt their grandma (even though it was not on purpose I still will not forgive her. My grandma did, but I think its unforgivable) be allowed to have babies? It is so unfair!

I have come to fear getting on Facebook. It seems like everyday another friend posts a picture of their pregnant belly or their smiling baby. My best friend here in New Mexico is almost 6 month preggo. Its her first kiddo and she has no clue what to do. She is relying on me since I have worked with kids forever. On Saturday I went to a giant Resale (huge city wide garage sale for kids stuff) with her because she wouldn't have gone alone. It was REALLY hard! Every other woman I saw was pregnant or carrying a baby.

I am trying very hard to be supportive. I know its not her fault that she managed to get pregnant so quickly (she started trying about 6 months after I did). I don't want my infertility to ruin her friendship, but she keeps telling me to relax and it will happen. I want to hit her everytime she says that. She is being very supportive and always wants to know about my doctor visits and whats the status of my treatments. But seriously if she tells me to relax one more time, I may loose it!

All of these things are happening around me. All of them make me angry. Angry at the people involved, angry at the world in general. I am having trouble keeping the anger inside. I am afraid the anger is going to spill out and end up hurting one or more of my relationships. Anger at my dad's step kid would easily hurt our relationship or at least my relationship with his fiancee. I am hoping that by letting some of the anger out here I can keep it from leaking out.

So to anyone reading this, sorry if the anger comes out a lot here. I feel like this is the only safe place to let the anger out.

Friday, March 11, 2011

Lack of Ovulation, PCOS and South America

Test result so for sure that I didn't ovulate. So we spent the night with some wine and tv from hulu. I have known for many years that I was likely to have trouble getting pregnant.

I was diagnosed with PCOS at 17. I was a smart enough kid to realize that if the only way I can have periods is to be on birth control, getting pregnant would be hard. I asked my mom about it at the time and she told me that I would probably have trouble, but that was a long way off and science is a great thing. Who knows what they will have come up with by the time I'm trying.

My mom also gave me some very good advice. She told me not to obsess about the diseases I had (at the time I still thought I had CMT). She asked me not to get online and start scaring myself with peoples horror stories. I managed to do what she asked until the hubby and I started trying unsuccessfully. That was almost 10 years of ignorant bliss. I knew in the back of my mind that it would be hard. But everything has always worked out in some way.

I have had my share of problems, but they always seem to work out in the end. CMT worked out. I was always terrified that because of my weight issues (which caused lots of self-esteem issues), I would never meet a guy. I had one actual boyfriend before my hubby. Tom. He was such a jerk. But at least I wasn't alone. Then I met the hubby. At first it didn't seem as though our relationship would be able to go anywhere. He was just coming out of a failed marriage. He needed time alone to figure out what he wanted. But I kept at him and eventually we moved in together and once we moved from Texas to New Mexico, I knew that we would eventually get married.

So even that worked out in the end. But for the first time, I am facing the possibility that I may never be able to have a baby. I still have numerous options to try before that possibility becomes a reality, but I want to be prepared.

Next step try Letrozole for at least one cycle. If it gets me to ovulate, we can do several cycles of it to try to get preggo. If it doesn't make me ovulate or if I don't get preggo after 3-4 cycles with Letrozole, we move to either injectable meds or IVF. I am hoping to do at least one cycle with injectables before IVF, but my RE said he is hesitant to do injectables with a woman as young as I am. The worry with injectables is that they work TOO well. It is easy for ovaries to over stimulate. There is about a 20% chance of multiple births with injectables. So to control that I would get to to to Abq every other day during the first half of the cycle. What fun, especially with gas at nearly $3.50 a gallon. After that we would try IVF. We most likely can't afford more than two cycles of IVF. Luckily only the first one is super pricy. Both cycles would be expensive, but the second wouldn't require egg retrieval. IVF would only work if my ovaries can form eggs. And if those eggs are healthy. I have no clue if that is true at this point. If my eggs are not healthy or viable, we would move to egg donation. I'm lucky enough to have a friend who told me she would give me some of her eggs if I need them. She is a gorgeous and brilliant woman so I would be very lucky there. But I know how hard the process is and how invasive so I would never hold her to that offer unless she is totally comfortable with the process. After all of that comes adoption. Not my top choice obviously, but there are lots of great kids out there that just need a chance. But man is it EXPENSIVE!!!

So that is the worst case scenario path. We discussed it last night and the hubby & I agreed that if we haven't got a baby by the time I turn 35 (I'm 28 now) we should give up and move to South America. This decision was inspired by 2 bottles of wine and several episodes of Off the Map (like ER in the middle of the rain forest). We may change the location, but even in the sober light of the morning, I think that if we don't have a baby by then, I am going to need a major change of scenery. We almost moved to Barcelona a couple of years ago. I could handle that or France or who knows where.

Thursday, March 10, 2011

Preserving Sanity Through Home Improvements

If we keep getting bad news from the RE, our house is gonna end up being super awesome! BFN (Big Fat Negative) on a preggo test = Tear up kitchen and put it back together in a better way. No ovulation with Clomid = Massive reorganization of all fabric in the house (for most that would be easy or no job at all, but for me it took around 3 hours, 5 boxes and several episodes of Bones on Netflix). Today I should get test results to know for sure if I ovulated. I'm guessing no. That will probably end with me reorganizing all the office supplies and sewing a table skirt (to hide all the crap under a table in our extra room).

Maybe next round if we get a BFN we can remodel the bathroom?

And the Verdict is...

I never ovulated. We are waiting for lab results to confirm this, but my RE is pretty certain. So now I move on to Letrozole. Another pill to try to get me to ovulate.  I'm not optimistic. But then again I'm never optimistic. Letrozole is supposed to have less side effects than Clomid so I'm hopeful that at least I may not feel so crappy this round.

If this doesn't work, the RE wants us to do IVF. I am really hoping it doesn't come to that. We have been battling down our debt and IVF will put us right back in a huge amount of debt. I'm in major research mode today. I'm looking at cost of IVF and financing options. I am also looking into adoption. That is a long way down the road and IVF and possible egg donation come first, but I want to know what the options are and how much they cost. Realistically we can't afford more than 2 rounds of IVF so if it doesn't work in 2 rounds we need to be prepared.

I feel like I am jumping the gun a bit, but I like to have all possibilities listed and organized. I feel like the more out of control my life gets, the more I try to hold onto control of little things.

We have a spreadsheet with our credit cards and various bills. We have chiseled them down a LOT! Thanks in part to our tax refund this year and also to buying our house. We cut our rent/mortgage by 200 bucks! We probably spend about an extra $100 per month on house stuff, but its still a savings.

I really want this to work. Please, someone give my stupid ovaries a pep talk or something. All of my trash talk doesn't seem to be working.

Wednesday, March 9, 2011

Back to the Doc Once Again

I'm headed back to the doc today to sit down and discuss what the heck went wrong with this past cycle. 

After they gave me the double dose of Clomid, I had another ultrasound (this was a Friday). Still no big follicle. They sent me for blood work again (my poor arms are starting to get scar tissue that makes it hard to get blood easily). So we headed home, from Albuquerque to Los Alamos (1.5 hours one way). Then we get a call on Saturday saying that based on my estrogen level, I would ovulate in the next two days.

Back to peeing on a stick.  Sunday I got a positive on my Ovulation Predictor!  We were very excited. So we called the docs office and set up a time for insemination on Monday morning.  Back to Abq. They do another ultrasound! I am getting so used to this that when I went to my allergist this week and saw a doctors office that didn't have stirrups I was a bit surprised! Ultrasound showed no big viable follicles again!

The doc (not my usual one, but the other one in the office) thought that I had a false positive. More blood work. More needles digging around for a usable vein.

Got a call that afternoon that it was not a false positive so we had to turn around and go back to Abq the next day for the insemination.

I had little hope that it would work this time. Too many issues. And what do you know, I was right. After the IUI (aka insemination) I got to wait 2 weeks which puts us at Tuesday morning. So I did a test and no luck.

I wasn't expecting it to work, but I was not prepared for how much it would hurt to find out for sure. I have discovered that digital preggo tests are the devil!!! One line instead of two is far less hurtful. Having the test say "Not Pregnant" just pissed me off. So no more of those til it works. I'll use one once I know I'm pregnant just to see it say "Pregnant."

To deal with our disappointment, the hubby and I deconstructed our kitchen. It was great therapy. We got to use a crowbar! I highly recommend use of a crowbar to handle disappointment!

So I'll head back to Abq here in a few minutes and we will see where we are. I am armed with my list of research and questions. So here I go.

Lissie's Luck

I chose the name of my blog because I have found that my luck is an interesting thing.  Something wonderful will happen, but it will have frustrating consequences. This has repeatedly been the case with my fertility issues. No CMT, well boom - no ovulation either. I know that it is a crazy thought, but I can't help but think that if I had CMT we would have done IVF over a year ago and maybe I would have a baby by now.

I am not so delusional as to think that CMT with a baby would be better than no CMT with no baby. But its really hard to get past the no baby part.

We have been trying on our own for over a year. Hoping that diet & exercise along with the Metformin would help my cycles (or lack there of).

So December 2010 found us back at the RE's office. After an ultrasound (not the cute kind that has a little wand on your tummy, its a bigger wand and its a bit more invasive if you get my drift) the doc said that Clomid would help me to ovulate. We decided to start the Clomid cycle in January (we had a cruise planned and I wanted to be able to eat & drink lots on the cruise :).

January arrived and we started the wonderful (insert sarcasm here) process of trying to ovulate. This began with me taking Provera (aka Progesterone) for 5 days to try to kick start my body into having a period. I have discovered that I should read the possible side-effects listed very carefully for all meds I take because I will likely get most of them. And that is exactly what happened. I was moody and weepy and had a really messed up stomach and nearly constant heartburn. What a fun 5 days. Then when that stopped that, I got the lovely PMS stuff and before that was even over, I got to start the Clomid. Let me tell you, Clomid is NASTY!!! It kept the upset stomach going the whole time plus it added more moodiness. I just felt crummy. I keep reminding myself why I'm doing this. It helps for a bit.

So after the Clomid, I got to use Ovulation Predictor Kits (pee sticks, like a preggo test) to see when I was about to ovulate. I was to use these from cycle day 12-16 (cycle days start on day one of period). By CD 16 I had nothing. So back to the doc we go. I didn't respond to the Clomid. So they doubled the dose and I try again. Go back to the doc and still no big follicles (that's where the egg is).

More soon.

Tuesday, March 8, 2011

The Beginning Continued

Flash forward to October 2009. At the time, my hubby and I had been married for 6 months after dating for 4 and a half years. We knew that having a baby naturally might be hard because on top of the CMT I have Polycystic Ovarian Syndrome (PCOS). We also knew that our kids had a 50% chance of having CMT. My case didn't seem too bad, but each generation tends to get worse. Most cases of CMT are very serious.

We decided that instead of running that 50% chance, we would do IVF and have the embryos screened for CMT. I know that this may be a tricky topic for some people, so I won't go into it anymore than that.

We set up an appointment with a somewhat local (1.5 hours away) reproductive endocrinologist (RE).  He told us that I would have to be genetically tested to determine the type of CMT that I have. Apparently there are many types CMT, some much more severe than others.  So off to a Neurologist I go. Did I mention that CMT is a Neurological disorder?

After some testing the doc said she didn't think that I have CMT so she wouldn't prescribe the genetic testing. We were stunned and didn't believe her so off to another doc in another state who has more experience with CMT. HE also said he didn't think I had it, but since we wanted kids, he prescribed the genetic testing. Without insurance, this would have cost $15,000!!! Thank goodness it was covered!

The results took 3 weeks! And it turns out that I DO NOT have CMT!!!  Can you say "Holy life changing news Batman?" We no longer had to do the IVF. I no longer had to look at a future that probably includes a wheelchair. All I can say is that my life changed in an instant, with one email from my hubby. He called the doc and got the results. I had trouble believing it. I called my family and they were all happy, but no one seemed to understand what it meant to me. Their lives hadn't changed so they couldn't understand. My hubby understood. His life had changed too. I told him long before we got married that I could end up in a wheelchair. I could end up completely disabled. He knew the fear that I had been living with. I am an artist. I may never have my own art show, I may never have a piece in a museum, but art is still my life. What if I lost the use of my hands because of CMT. That was all gone now.  For almost 20 years I worried. 20 years of worries erased in a day. 


It was the best news of my life and yet it left me questioning everything.

But since we didn't need to do IVF, we started trying for a baby right away. No more birth control pills for me. I had seen my endocrinologist (regular, not reproductive) and she said my testosterone level and insulin levels looked good.  They were both in the normal range. For someone with PCOS, this is a big deal! I had been on Metformin for about 6 months (this time) and it seemed to be helping. So I was optimistic that I would start cycling on my own after I went off the birth control.

Once again flash forward to October 2010. Almost a year with no cycles. Maybe the Metformin wasn't helping after all.  So back to the RE we go.

How This Journey Started

My journey into the world of infertility began quite differently than most women's. I started looking into IVF long before I knew for sure that I had any fertility issues. The reason for this goes back almost 20 years.

When I was around 8 years old, I was diagnosed with Charcot Marie Tooth's disease (CMT). CMT is a degenerative muscular disease that mostly affects the arms/hands and legs/feet.  It is related to Muscular Dystrophy. Check out the CMT Association if you are interested in more info about CMT. As a kid I thought that was not a big deal. I got to sit out in PE. I didn't have to run the track. That was great since it hurt my feet. The docs told my folks that all they could do is have me sit out in PE and wear some ugly inserts in my shoes.

I didn't wear the inserts for long. They were this horrible barbie-skin colored hard plastic. They gave me terrible blisters. So I wore them out of the house in the morning and as soon as I got to school, they were in my backpack. I hated them. And now years later I found out that those stupid things were found to be carcinogenic. So good for me!

As I grew up, I learned more and more about CMT. When I was 12 we changed insurance so I saw a new doc about my feet. This doc took CMT seriously and within a month of my first appointment with him, I had surgery on both feet to lower my very high arches. Otherwise, everything else continued on as it had been. Someday I'll post about the fun of being in a wheelchair for 2 months at 12 years old.

I'll finish this story in the next post.