I'm trying to come up with our list of questions to ask the RE at our consult. The few sites I've found proclaiming to be guidebooks aren't very helpful, at least not to me. I already know that we will have to do some form of IVF due to the severe MFI. That's a given. I know that they prefer single embryo transfers. So this is my list so far...
Do you offer clinical trials? What are the requirements for participation? What is the likilhood that the trail will be cancelled?
3 or 5 day transfers?
Difference between Natural, Mini, and Conventional IVF? Are we a candidate for all three varities? Do you practice
all three at this clinic?
Judging by our previous testing what problems do you forsee?
What tests will need to be repeated?
If we proceed directly to IVF will I need to have an HSG
since my tubes are not in play?
What additional testing will be required?
Do you ‘batch’ cycle?
What would you envision our success rate to be?
Do you cancel an IVF cycle if the patient produces less than
so many follicles?
Do you have a self-pay or pre-pay discount?
Do you freeze eggs or embryos?
What is your Fresh vs Frozen rate?
Do you use vitrification?
How much does it cost to freeze?
Looking to cycle in July or August. What would be our plan
of action/calendar?
Cost of one cycle with drugs?
How much monitoring will be required?
Is there a way to have monitoring done at a different
location?
I'm also thinking of creating like a table to put all the info about the three types of IVF together. Maybe something like this...
Natural
Ivf
Mini
Ivf
Conventional
Ivf
Total
Cost
Success
Rates
Drugs/Protocol
Minimum
Monitoring Visits
Recommended
Number
of Eggs expected
Help me build my list of questions, pretty please with sugar on top? I want to make the most out of this visit.
I feel like I'm on a roll. I made my second doctor's appointment yesterday, this one for my poor stupid foot. My appointment is exactly one week from today. Unfortunately my husband won't be able to come due to work, but on the plus side my mother has agreed to come with in his stead. Which is good, because I don't know how ready I am to face a foot doctor on my own.
A few random foot related thoughts...
I always found it funny that the doctor who delivered me was Dr. Cripp. Cripp...cripple. Okay maybe I have a slightly twisted sense of humor that skews toward irony.
My mother had no clue that I had a club foot til I was born. She tells this heartbreaking story of when they finally handed me over and seeing my foot for the first time.
Even though doctors are pretty much on a consensus that clubfoot is genetic, there is no one else in my traceable family line that has the defect.
My mother is convinced that two things happened : 1. that she almost lost me early on in the pregnancy and 2. that my bad foot was 'stuck' under her ribcage for the majority of the pregnancy. According to her it was a constant pressure and pain and that you could even feel something solid there.
The doctors thought they could fix my foot with the Ponseti method, which includes a series of castings, stretchings, and massage. It didn't work and I had surgery before the age of 1.
I learned to walk with a cast on.
My family tells another story about how I didn't cry as a baby. I simply stuck my casted leg out through the slats of the crib and pounded it on the wall until someone came.
I had arthritis by the age of ten
One summer I spent my vacation trying to bulk up the bad leg in hopes it would take care of some of my pain. I stepped up onto a stump, kicked trees, rode bicycles, and skipped rope. It didn't really help.
I didn't own my first pair of regular sneakers until a year ago. Until then I always wore boots, for the ankle support.
I can not wear heels...period. Even though I not so secretly long to.
At one time you could visibly see the misalignment of my knees, hips, and even my rib cage. Most of which has all but evened out as time has went by.
When I was younger my hip used to pop out of place randomly for a few seconds. It was incredibly painful but brief.
The last time I saw a doctor for my foot I was a freshman in high school. Gym was a requirement and most days I had to have help from friends to reach the school bus after glass. I saw the doctor who did my original surgery. He was pleased with how things had turned out and didn't recommend further treatment and wrote me a note to get out of gym. Which was so worth the dr.s visit.
That summer one of our horses stepped on my foot. It didn't hurt much at first and I was planning on limping it off....til I looked down that is. I almost went into shock. In the maybe half a minute I tried to ignore it a peach sized lump had grown on the top of my foot. Everything started to go black and I almost fainted. That was until my mom hit me like a linebacker, then I was back to awareness if not more than a little nauseous. We didn't go to the doctor then. I regret that now. Two months later it still hurt and I spent my entire summer pretty well laid up. The weight of water in the swimming pool even hurt.
Before I started working this new job, my foot was the best it had ever been. I could do fancy yoga poses on it, I was developing a wonderful sense of balance and strength, I was even working on the ability to stand on my tip-toes. Sadly that's all lost now.
And finally, when I first joined The Bump I remember posting about how I was afraid to postpone having children any longer due to the worry of not being able to run and play with them, or falling while holding them. The ladies (and GM,lol) pretty well reamed me and told me I was vastly over-reacting. Though I wasn't certain then, I am now that they were wrong and my condition is serious and it's progression is definitely a factor in my future whether as a parent or just an active woman. The next time something like that happens I'll remind myself that they don't live my life and don't understand the problems associated with my condition anymore than they know what its like to be a unicorn, and that I should never feel silly for taking my health seriously.
A true baby step, a step towards our baby. Finally, after months and months of either Hubby putting it off, not being able to afford it, or not having time to schedule it, we finally made our appointment with a RE (Reproductive Endocrinologist). We go on April 9th to see Dr. Murray at Tennessee Reproductive Medicine. It will be a two hour drive with an hours time difference that will make it feel like three. I'm going to start putting together a list of questions to ask at our consultation so if anyone has some suggestions let me know. Now that the ball is finally beginning to roll again, I hurried up and got with both my dr. and Dh's dr. and had our medical info sent over so that they will have everything pertinent at that first visit. I just couldn't wait anymore. I'm sure the next two weeks are absolutely going to crawl by.
I don't know what to do with myself. My bad foot is acting up something horrible. To say that it scares me would be an understatement. I panicked on Monday. Full fledged, took my sock off and started to cry, panic. My foot has never been something pretty to look at. I remember very specifically this one time my mom and I went shoe shopping. I was a teenager, probably looking for dress shoes. I was sitting down with the socks off while she went to go get me a different size and I happened to look down at the mirrors. I stared almost stunned at how ugly it looked, I'd never really thought about it, never really looked, never been subconscious until that moment. By the time she came back my eyes were filled with unshed tears and I was shaking. 'It looks so different," I mumbled, "So bad. It'll never be normal. Why can't it be normal?" My mother, usually so composed, broke into full blown sobs right there in the shoe store. I was so shocked by her reaction and my very basic need to have her be happy that I stomped on the feelings I had at the moment and tried to console her. "It's okay, don't cry. I can walk, at least I can walk. It doesn't have to be pretty, just as long as it works. And it does okay, so don't cry."
Remembering that day and the fear I feel now brings those tears back. When I took my sock off Monday night after a day of hobbling on it, it looked worse than it has ever been with one exception. A huge blue black bruise circled my 'knot' spreading down towards my big toe out as far as my third toe and halfway down the foot. Darker purple ribbons of color snaked throughout and it was swollen everywhere. The pictures do not show the full extent of how badly it looked and they certainly do not capture my panic. For you see I didn't do anything to it, but walk. I didn't bump it, stub it, or drop anything on top of it. It appeared with no seeming cause or correlation. And the pain that comes with it is nothing to scoff about it. A heavy blanket on top hurts. The new orthopedic shoes I bought last weekend. Yeah you can forget about it, I can't wear them. I'm so lucky I bought three pairs of shoes on that last trip, because only the very last pair I picked up the ones I almost didn't buy are the ones I can wear.
I have been icing it every day twice a day, once after work and once before bed. As you can tell it has improved significantly, but its still swollen and there are still those odd dark ribbons of color on my toe. And it's still very tender. And that knot isn't the only place it's hurting, it isn't even the worse place it hurts. My ankle is so stiff and painful. The tendon that goes down the outside of my ankle is where I feel the most pain and its so swollen there I can't even see that tendon anymore. I limp constantly, wincing from the pain. But most of all worse than the pain is that I'm still scared. The thought of going to the doctor for it scares me. The thought of surgery scares me. The thought of amputation being suggested scares me. The thought of a wheel chair scares me. The thought of never being able to walk scares me. I am so scared right now, I don't know what to do. This development is making me question so many things. I wonder if I can keep working. I wonder if its even right of me at all to want children, what if this is genetic and not positional as my mother's doctor suggested and I pass on this terrible burden to a child. What if pregnancy is the straw that breaks the proverbial camel's back and I can no longer walk? What if there's a reason we're infertile? What if by the time I'm 30 I'm stuck in a wheelchair? Ontop of all this, Dh's doctor bills came in. He owes a little over a 1,000 dollars. It's going to have to come out of the Fund. In a few days it will drop from almost 5k to 4k. If I do have to go to the doctor that will also have to come out of the fund. I'm never going to reach my goal. The more that has to come out, the more I have to work, the more damage I do, the more scared I get that something is going to have to give and I don't know what it'll be. My body or my heart.
Yesterday I dragged myself out of bed on my day off, worked the stiffness and pain out of my feet, and headed out shoe shopping. The day before I'd spent no less than 5 hours online researching. Researching what type of shoe would be best for my club foot, what brands and models I should be looking at, and how much each of the ones who made my short list would cost at various online retailers. I have to be one of the few if not only people in the world who makes a spreadsheet to go shoe shopping.
So with my list in hand of my top 25, I confidently set out on my excursion. An hour and 30 minutes later I was in the first shop on my list. Where within 10 minutes I crossed out the first two hopefuls. Both were Timberland Pros and were at the top of the list because I used to wear Timberlands non stop. The Pro version has a very solid unmovable heel cup and since my foot/ankle doesn't bend very much I couldn't get my foot into the shoe at all.
Already feeling a little daunted, hey it doesn't take much to get me down when it comes to shoes, we headed to the largest shoe store in town. Instead of browsing for an hour, I handed the guy behind the counter my list and asked him if he had any of the ones on it or a comparable model with a heel to toe rocker sole. Less than 5 minutes later and he tells me they don't have a single freaking shoe on my list. Crap! We browsed around anyways hoping to find something I hadn't done research on that would work, but no luck. We asked a few of the employees if they knew where a medical grade shoe store might be in town, they didn't know but referred us to a scrub shop on the other side of town. The drive there easily took ten times as long as I actually spent in the store. Nothing there either.
At this point I'm getting pretty whiny about everything. We checked online and discovered two orthopedic shoe shops. One of which is closed on the weekends. Gah! So we went to the other not feeling very hopeful because once upon a long time ago I'd been there before with no luck. The Good Feet Store had one of the shoes on my list but could order the others. The lady who greeted us started on her spiel and even though I told her I wore a 7.5 to an 8.5 most days she insisted on measuring my feet. Which came up to a 5.5 on the bad foot and a 6 on the other. I could hear her in the back lamenting how they didn't carry shoes that small. I rolled me eyes and sent my mother back to tell them yet again I usually had to wear a bigger size. She came out with a 7. I barely got it on before I ripped it right back off again from the pain. She insisted that it shouldn't be too small and I insisted that it was. Length is never the issue when it comes to my feet. I finally had to take my sock off and show her my foot. She couldn't hide the gasp. Well that made me feel good. 'Oh you poor dear.' Yeah yeah yeah my foot is f-ed up. I know that thank you. Finally she brought me a larger shoe. Which was sadly too large because it was an 8.5 in a D width. It felt nice actually very roomy, but I know from experience in a few months they'd be way too roomy. She called the manager over who also immediately started on the sales pitch. The original lady nudged her and told me to take my sock off and show her, almost as if to say' you shouldn't be pitching to this one'. Sigh. Really. Again gasps. She immediately fixated on my oddly placed bunion. Telling me I needed this and this to help my joint pain there. I told her there was no joint pain. But its so red and inflamed! No its red from friction and pressure. Its not inflamed and its always at least a little red. She continued and finally I had to put the proverbial foot down, "That's actually the one spot on my foot that doesn't hurt' I said quite loudly. So probably for the next hour or so she's doing everything in her power to get me on their 'system'. A system that might be fine for other people but isn't right for a club foot sufferer or anyone that's had actually surgery on their foot. Geez lady I just want a freaking shoe. Finally with an upty tone in her voice she says in a way too loud aside to the other lady, 'well I think she's made her mind up'. Ya think?! I've lived with my condition for 27 years I know whats going to hurt and whats not. Despite all of this I was still seriously considering buying their $138 shoe even though it wasn't in the color I wanted because it fit and felt good once they got the sizing right, an 8 by the way, just so I would have something different by Monday. We had one more shop to go to.
Marti and Liz, they buy outlet shoes, store closeouts, returns, and occasionally name brand seconds and second hands. Within minutes I was in heaven. They had the shoe! In my size! In the color I wanted! For a hundred dollars less! I was freaking giddy. Feeling on cloud nine I tried on a few others and found two more shoes that fit very nicely. I knew I was getting the orthopedic ones but I was hesitant about the other two. My mom pointed out that I had budgeted a 100 for one pair of shoes and that if i bought all three I was still right on the money. Thats a good point. And that i wouldn't have to buy shoes for quite some time. Hmm that's another good point. In the end I wound up buying all three. New Balance 928 (8B), New Balance Encap990(7D), and an Easy Spirit 360 PumpUp (7). Each one a little different, the 928's for work wear, the Encap for work wear on a good day or a day where my bunion is a little sore, and the Easy Spirits for just running around. Heavy duty, medium, and light. Perfect. Now maybe I can start to phase out my hiking boots a little. Then my mom surprised me with a pair of dress shoes she had ordered for me. So cute and strappy with a wedge heel in a wide width. The only problem is my ankle is as of yet a little too weak to tell if I can wear them or not.
Its hard to believe I came home with four pairs of shoes! That's unheard of for me. Now hopefully I can get a little less pain and little less worry out of work.
Oh and I added another 364 dollars to the Fund what with my first full paycheck and all.
It seems like anymore every day is a struggle because if it isn't one thing its another. My hubby's health seems up in the air as always. After a couple of weeks of fluctuating symptoms that could have been an UTI he finally went to the doctor. After discussing his symptoms she threw out a couple of possible diagnosis, uti, kidney stones...cancer. He told me on my lunch break and it was hard as hell to keep it together and hide from my new coworkers that I just wanted to run away kicking, screaming, and bawling my eyes out. After a few very tense days and way too many tests we got the verdict back. Thankfully he's cancer free and uti free and kidney stone free. In short they don't have a clue what's wrong with him. However the doctor noticed he had an abnormal amount of red blood cells. She thought that perhaps that might have been the cause of his wacky symptoms. Tonight he's spending the night away for a sleep study due to suspected sleep apnea. I've been telling him for years that it seems like he stops breathing in his sleep and that it worried and scared me. He's always dismissed it out of hand. I hate that it takes a doctor telling him something for him to take it seriously. When is that man going to learn that I'm (almost) always right, lol. The good and the bad of the situation is that we've now met his deductible and everything for him from here on out will be covered. The bad is that bill or bills is just hovering out there in limbo waiting to flood our mailbox. Poor Claire has started pulling her hair out again. Try as we might we can't get her to stop. While we wait for his doctor bills to come in we can't take her to the vet to get a steroid shot. I feel bad for my sweet furbaby.
As for me I'm struggling too. The new job is putting me through my paces and I'm afraid I'm coming up wanting. For the first time in a very long time I'm truly feeling like my surgically corrected club foot is a real disability. Not just frustrating but really disheartening. I haven't had a pain free day in weeks. I searched out a club foot group hoping to get some insight into others dealing with the condition. What I've learned scares me even more. So many members of the group have opted to amputate. They claim that it was the best decision they ever made, that they have no more pain. A fair portion of the others are wheel chair bound. While I always assumed that might one day be my fate I suspected it would happen in the later years of my life, 60's or 70's or so. Instead I'm seeing a lot of 40 year olds who can no longer walk for the pain. It is so scary. I worry that I will lose my ability to walk if I continue working this way, but I can't reach the IVF fund goal without working. One problem feeds off the other like an oroborus. I worry that the damage I do now will haunt me even if we succeed on this hell bent course. What if I can't pickup my child or run and play with them. I'm thinking of finding a good orthopedic doctor but so few have experience with the problems of a post club foot patient and that's more money that will get taken away from the fund which in turn means more time that I have to work. Vicious vicious cycle. My grandmother gave me $150 for the fund this past weekend. My mother added in another $50. They keep turning the problem over and over in their minds thinking if they can just get up the money I'll give up working and go back to being almost pain free. They know I won't give up otherwise. I am so grateful for their support. I've also put in my first portion from my first paycheck into the fund, $197.
One small positive on this roller coaster ride is how much we are enjoying our little 'break'. I like not temping, not obsessing, not scheduling. We still haven't gotten our 'groove' back but without the pressure I feel like its only a matter of time.
