Being a Lab Rat

It's been a long couple of weeks, of being poked, abused, and every last ounce of me examined, or so it seems.

I had needles going in my arms, in my spine,and in my hip bone.  I had MRI's and CT scans, and of course the numerous ultrasounds that seem like nothing now.  I've had so much of my fluids drawn that I'm surprised I have any left.  I've test I can't pronounce and test I never want to do again.  My life has been spent being a lab rat.

Good news, I don't have cancer.  Bad new, my doctors have no idea why my ovaries are enlarged, why I can't fight the simplest of infections, why I feel like I've been run over by a train 98% of the time, or why my migraines no longer respond to any medication.  They have no idea what to test or what to give me to help me. Honestly I just want to be given an IV in my arm hooked up to a morphine drip and just left alone to sleep all the time.  Instead I attempt to have a life.  I try to go out with friends.  Friends who have kids and are pregnant and talk to me about how tired they are and how unwell they feel.  I have to sit there like a good friend and just take it when all I want to do is cuss them out and tell them the shut the H up! Yet I don't.  Instead I tell them I'm sorry and ask if I can do anything to help.  WTF is wrong with me?

I now spend much of my time wishing we have never begun TTC.  My health was never great before, but now it's ruined.  What did I do to myself, all because I couldn't let go of my desire to have a biological child.

I have no idea where I'm going from here.  All I wish for are days that I can get out of bed.  As long as I can force myself up I can at least pretend that I have friends and a life.

Ovaries, Eyes, and Pain

Here is a short update, since I'm not into writing on this time.

Things have been crazy for me.  It all started with a cyst on my right side that wouldn't go away, had to get it checked out, turned out it was also an enlarged right ovary.  After much testing, u/s, poking, and prodding my doctor is still fairly clueless what is causing this.  His best guess is an infection.  I was put on hardcore antibiotics and steroids. Things started to calm a little.

I came home only to discover I also had some weird (and still do) issue with my right eye.  All symptoms are that of a sty  but there is nothing visual to point to one.  It's just another weird thing my body does that makes now sense.

My eye is getting a little better, except at night.  My right side is still painful, but not as bad and I have been able to move a little better, but now my left side has kicked in, exactly like my right side, but seems even worse.  I'm not sure if that true, or if it's just became I just tired of it all and don't want to deal with it.

So that's where I'm at, dealing with my stupid ovaries and my doctors have no clue what's going on.  I'm stuck in bed and not able to have a life again.  Though I have been doing badly at staying in bed, mostly because I'm just so mad I don't care what happens.  Yesterday I took some time to photograph an amazing sunset, and today and I had fun playing around with them and doing some fun and crazy edits.  You can check those out here.

Post-Op

I've been dragging my feet about sharing my post op.  Mostly because I just don't feel any better about any of this.  I'm so bummed that even after all this I can't find any hope.

Dr. S showed me my pictures of my messed up insides.  I had so many dark cyst it was crazy.  He showed me my poor left ovary.  It was covered in a mess of scar and endo tissue that has glued itself onto my bowel and pelvic wall.  He explained that this was probably what was causing all the "pulling" sensations.  After he had removed all the tissue he added a weird mess device around the ovary to hopefully prevent it from reattaching while healing. The device is suppose to dissolve, in fact should be gone now.  That does worry me a bit, because what will prevent it now since most of us all know that endo doesn't stop growing just because of a lap.  We also know that I won't just magically stop having cyst rupturing.   My tubes looked great, which was a relief.  It was nice to know that the on tubal ectopic I had was just a random fluke and not because of my tubes being destroyed my endo.

My uterus was different story.  Dr. S told me that there was barely a spot in my uterus that was not covered in endo or adeno.  Crazy.  It's been no wonder I've felt so terrible and had so much bleeding.  He removed as much and as deep as he could, but he was trying to be careful because while removing it is good, it does also create more scar tissue, which just provide a welcome mat to growing endo.

That really all he did. It was good, but I don't feel it was enough.  He didn't search outside of these areas, which I know shouldn't effect my infertility, but I'm thinking about my quality of life as well.  I know in my other surgeries Dr. N had looked everywhere and had found stuff on my bowels, stomach and intestines.  I have no doubt I have some back, but I don't think that was taken care of.  I know I pursued this surgery in hopes of helping us in having a child, but I did also want to have some time of feeling better, and now I'm sure that is going to happen.

Dr. S went on to explain that he thinks that I'm still no ovulating.  I was like um, how is that possible?  Clearly I have since I've been pregnant.  He then went on to explain that yes technically I've been ovulating, but they have been chemical/clinical pregnancies, which basically means that while we had implantation issues, we also may not have had fully mature eggs.  This confused me because all my follies have been of good size.  He went on to explain that when monitoring everything is guess work.  He said that while I've had good follie sizes there may not be an egg, or a good egg inside.  My body is going through the motions of getting pregnant, my HCG raises, and I've even had a sac, but other then our first, we are not sure that anything was really there, or at least anything truly viable.

Well this was a lot to process.  It made me feel like the children we lost were suddenly nothing.  I felt like I shouldn't feel sad for them.  I know that's not true.  I know the chemical doesn't mean there wasn't something there, but it makes me feel like the loss of them is suddenly less important.  This in itself was a lot to take in.  I'm still trying to process what this all means.  How am I suppose to have hope that things could work now, when really nothing has truly gotten better?

Dr. S is ready to rush forward with trying again.  I was on birth control before and after surgery.  Today is suppose to be my last pill . Then I am suppose to wait for AF and start with my base scan.  I've been spotting/light flow since my surgery so I know it won't take long for AF to show.  Once the base scan clears me of cyst I am suppose to start 5 days of fermera, a oral pill normal used to treat breast cancer, but in different dosage is good for treating endo, or helping to stimulate the ovaries.  Once that is complete I'll start gonal injections, and start monitoring with ultrasounds and blood work.  Our hope is that with the blood work we can have a better idea if I'm really ovulating or not, or if it's good quality or not.  The idea is to do this cycle, get results, and depending on what happens, repeat one more time.

The crazy part is that he only wants us to do this 2, maybe 3 more times and then go straight into IVF, he doesn't want us to waste time with an IUI because he doesn't feel it would help, since it's not a male factor at all, it's an ovulation and implantation issue.  I haven't been able to share fully with this doctor that my husband and I are not really for IVF, but I have to say, now that we've made it to this point where IVF looks like it may be our only hope, I'm wavering in that choice.  I even sense that my husband is. Money may be the deciding factor anyway, but I'm not sure what to do. Dr. S holds more hope with IVF because we can actually see quality, and know that it's got a real chance of survival, but then there is still implantation to content with.  Though with being freshly cleaned out there is some hope that it could happen.

I'm not sure how to feel about any of this.  I've been stuck in this weird funk.  I haven't wanted to go hang out with anybody, it doesn't help that my friends around me all have kids and, while they try, completely fail at understanding.  I have no idea what to do.  I don't yet feel recovered from my surgery, but I'm suppose to be deciding if we start the journey of TTC again.  We haven't decided if we want to try, or wait another month.  This means more time for endo to grow, more time to lose even more eggs.  It means that we have more time to heal from our last loss, my surgery, and time to think and make more knowledgeable choice. We have until tomorrow evening to make a choice.

I'm losing hope, I'm losing my peace, and I have no idea what to do, what to think, or what to feel.  Why does the journey for children have to be so hard, why are the the most undeserving incompetent people able to so easily conceive and birth healthy babies?  I'm angry, sad, and so tired.  I'm so tired of having to pretend I'm happy all the time.

The Date is Set

I'm not sure why I've been putting off updating and letting you all know that my surgery date has been set.  There is no real reason.  The only thing is that I've been busy trying to clean house, get ready for a garage sale, get frozen dinner prepared for recovery, and rest because I've been exhausted.  The garage sale won't be happening until after my surgery, but I need to be ready for it, and won't be able to do much.

My surgery date is July 20!  Friday the 13 is my pre-op.  Not sure if I should be worried or superstitious about that day, but for now I'll hope it means good things to come.  My husband has take the 20-29 off of work.  I'm really glad he will be around for everything, to help during recovery as well.

I'm trying to get a lot of things done before my surgery to make it easy for him.  This is his only vacation this year, and he's spending it taking care of me.  I want to make it as easy for him as possible so I've set goals.  My goal is to deep clean the house completely, to have everything that we sale at his parent's garage sale set aside, and to have easy meals he can pull out of the freezer and set in the oven or cock pot and not have the think.

It's funny.  I've had some friends tell me to make him do the cooking, but he only BBQ's, so I don't think I want learning while I'm on almost bed rest, and like I said, this is his vacation time.  We've even played around with the idea of going to the beach for a night, or up to our old camp for a few days.  We've been wanting to go, my husband has really wanted to go volunteer some time, but we know we were going to have a surgery to work around, and my brother from Seattle is planning to come with his 3 kids, so his vacation time has had to be worked around them.  We are not sure, because we don't know how I'll feel.  My husband thinks I won't be up to, but I think I'll be fine.  If we go up there, I won't have to cook.  My in-laws will take care of my dog. All I need to be able to do is walk, which should be able to do, even if it's slowly.  I may just have to take an hour to walk to a meal, instead of 10 minutes, but I'll take that.  It would be nice little getaway for us, and this may be our only chance.  My brother is coming in august, and hub's will not have a lot of vacation time left, so the days he takes off will be like a  Friday and/or Monday with a weekend in between to utilize the time well.  I'm looking forward to my brother coming.  I only see him about once a year (which is more than my other two, which is never) and the last time I saw his kids he only had the oldest twins, who were about 14 months, and didn't have his youngest girl.  He will also be bringing his girlfriend, who I only had a short meal with once, so I'm looking forward to getting to know the girl who has helped him to love again after the lies and hurt his ex-wife put him through.

I've been busy in this yuck heat trying to get everything ready.  My meals has been pretty easy.  When I cook dinner, I know just double everything, and easy have leftovers to freeze.  As I dish them up to be frozen, I write out the directions for cooking and put them on the dish for easy reference.  It should be fool proof (knock on wood!)  Now that my pre-op is not too far away I've started to get a little jittery feeling.  I just need to keep distracting myself.  The date is set!

Remembering

Just when I think that my endo vomiting is more than I can handle, OHSS rears it's ugly head and I've been awake since 4 Am vomiting every ounce of food, or liquid I take in, and then some.  I'm doing my best to fight it all.  I'm fighting the nausea in hopes of holding down at least liquid.  The last place I want to end up in is the hospital.

Thanks to my exhausted state of my mind, I can't help but think and become overly emotional.  What is today's thoughts? For once during this cycle, I'm not freaking out about all the possibilities of what may be, I'm taking it a day at a time.  I'm not hoping, but I'm not bracing for the worst either.  I just am. Today instead of worrying about what will be, I'm grieving for what never was.  The other day I was chatting with a friend.  I was sharing about my first miscarriage and suddenly I realized the date marked a milestone in what would have been our first born son.  He would have been 18 months.  I know imagining what life could have been is just as unhealthy as "what  if's" are; yet, that is what I have found myself doing.  It's been so hard to imagine that I would have an 18 month old.  I've imagined what his most current milestone would have been.  Would he be walking on those unsteady legs, having finally taking his first steps.  Would he have been practicing with walking to mommy and daddy in a fun little game?  It's so hard to imagine that I could actually have a child.  How different my life would be.

It amazes me how just when I think I'm making progress on this grieving thing, one thought can send me miles back on this journey.  There are days I feel I'm worse then when it all started.  Today, in between trying to hold down my liquid and vomiting, I remember the babies I mothered, but never got a chance to meet.  I wish I could bring them back, but my love for them will keep them alive in my heart.

Distractions

This week while dealing with the unknown of my future ability of children I've been attempting to keep myself busy, to do more with life.  I'm trying to remind myself that I'm more than a women with endometriosis.  I'm more than a women unable to get or stay pregnant.  I'm a women who has talents.  I needed that reminder, so I've been busy this week.  I've been trying new projects and practicing old talents.  I have been doing a lot with my photography.  If you want to see what I've been up to with that, take a look here.

I did finally try making fudge for the first time ever.  I've never been a fan of cooking or baking, but I would rather cook than bake.  Fudge really doesn't fall under either one, so I don't know why I avoided trying it.  I got a peanut butter fudge recipe from my friend and tried it out first as it was, and then made a chocolate and peanut butter version.  They turned out so delicious and I'm rather proud of myself.  It was nice to know that this messed up body could manage to do something good.

I've been trying to decide a new look for our bathroom.  We had a mix of blue, but no real theme anymore in out bathroom after moving in.  I thought I wanted to keep my dark blue and just add silver to that, but it was becoming hard to find, unless I wanted to spend a lot of money, which I didn't.  In the end I decided on something that was no where near what I thought I would like, but it's perfect because it blends perfectly with the bedroom set.  So someday when we buy a house and have a master bed and bath room it will go perfectly.  This new color though meant I needed to change some of the knickknacks in the bathroom, and I wanted to this without spending a lot of money.  A few years ago my husband got me hooked on the Bawls energy drinks. I ended up falling in love with the bottles as well.  They were the prefect color of my kitchen decor, so I spruced them up a bit and added them to our house, nobody the wiser to what they really were.  When we moved into this little place they fit better in the bathroom, and when well with the dark blue shower curtain I had, and I was planning to change the color scheme to fit.  I have no decided against that so I did some work on some new bottles and got a new plan for them.  I'm rather proud of what I did.  

This is our bedroom set

This was the non matching shades of blue bathroom

This is the new one (ignore the towels, I have matching pretty ones now)

This was what I started with

This was my first creation

This is the new one for the bathroom!  I'm proud of how it turned out.  

 I was not able to fully ignore our situation these last few weeks, but it was nice to try to plan other things.  It is all catching up now.  My experimental stims don't seem to be working that well and we have to figure out what we want to do.  We don't have a lot of information to help us figure out what to do.  When my husband is back from his business trip we will be having to talk and make decisions we have been avoiding.  Right now I'm fighting with either a cyst about to rupture on my left ovary, or more endo growth.  If it's endo growth its going to be hard to figure out what to do.  Right now it creates bad pain so stand straight, or to sit in most positions.  It's so frustrating.  Before this pain hit me though, I was so ungraceful when getting energy drinks at BevMo last Friday.  I had a bag full of glass bottled drinks when I stepped off a curb and rolled my foot and fell landing on my elbow as my brace (without spilling or breaking my drinks!)  It felt fine at first, so the walk back to the car was fine, but half way home my foot was in so much pain and swollen.  Thankfully I had an appointment in a few hours anyway for my allergy shot.  I was concerned about being able to drive there, so when I got home I put my foot up, took ibuprofen, and iced it.  It felt a bit better, but just walking to the car and driving to the doctor ruined it all.  They ordered an x-ray and I had to wait for results.  By the end of the weekend I was hardly able to walk.  Monday my results came in, not broken, but I had bruised the bone.  I was told to rest it and come back at the end of the week if still swollen and in pain.  I am, so tomorrow I'll go in and probably have at least a soft cast of some sort.

The photo does not do it justice

This weekend we are headed up to my in-law's cabin to help them make their fire break that is required every year.  I'm not really looking forward to the work in my current condition, but I'm looking forward to getting away.  It's going to be the whole family.  My husbands parents, brother, sister, and her fiance.  It should be fun despite the work!