Tuesday, January 24, 2017

Ideas...

Go figure, I'm slacking and haven't been keeping up with my entries. Ugh. Finding out baby number three wasn't much of an option hit harder than I expected and Curly Bones took a major backseat. I didn't want to write about all of it and now that I am ready to write again, I feel like I'm at a loss for words. I really don't know what to say or if I should bother writing at all. I started Curly Bones as an outlet for our infertility woes, a place to vent, a place where others could visit and realize they weren't alone. It helped me through a lot and I hope it helped at least one person but it served it's purpose either way and now I'm not sure what to do with it.

I've considered taking things in a completely new direction, I still have Arthritis and a major part of Curly Bones revolves around my Arthritis. I'm done trying to get pregnant, done having babies but I'm still a Mom with Arthritis, raising two toddlers and realized maybe I can still help other mothers. Mom's search out parenting advice all the time and mom's with Arthritis aren't any different but we definitely have a different experience when it comes to nurturing our children and maybe sharing my experiences as a mom can help.

I've come to realize there are a lot of mom's out there with Arthritis and other Autoimmune Diseases that don't have anyone that can relate to what they go through on a daily basis. There aren't a lot of resources for advice on the physical aspects of caring for a baby when you have Arthritis or recommendations for tools that can make life as a Mom easier and less stressful. Maybe the few years of experience I have can help those new moms that are searching for any advice they can get. So, for now Curly Bones will stay active and I'll still be here for those of you who have infertility questions or just need someone to talk to. I'll also try my best to decide what's next for this page of mine and I'll do my best to make it happen before another four months passes.

Saturday, September 17, 2016

I'm back!

My husband surprised me and bought me a new Chromebook so I can get back to writing again! Now my son can officially take over my iPad, my daughter can nap and I can blog in peace. Well try to anyways. heehee

So much has happened since April that I'm not sure where to start. At the end of July we met with our fertility specialist in hopes of having another FET. We had 5 embryos left and always wanted 3 kids, so the time was right. After discussing my past pregnancies and miscarriages, our doctor suggested we have our final 5 embryos tested and see how healthy they were and if they possibly had any unexpected issues. We weren't excited about the additional cost but agreed it was the safest thing to do and would save me from the possibility of another miscarriage. Our doctor was pretty confident that we'd have at least one healthy embryo but sadly after weeks of waiting and testing, we found out all 5 had chromosomal issues. Our hopes of having another child flew out the window and we felt lost. We always planned on having 3 kids. My husband even had 3 boy and 3 girl names picked out, never expecting that it wouldn't be possible.

We started the entire IVF process with the fear that we might not even be able to have one child but our hopes were lifted when we found out we had 13 embryos. One child seemed possible again, why not 3! I even joked with my husband that 3 was the limit, I wasn't having an entire football team! Now, suddenly, we're done. No football team. No reason to save the countless boxes of baby clothes and gear that have taken over our garage. Nothing. We're suddenly done. But not by choice. We ran through our options, risk trying to conceive naturally at the age of 38 and 42 years old, risk creating more embryos with serious chromosomal issues, risk more miscarriages or just stop and remember how blessed we are to have two very healthy and happy kids who we love beyond belief.

I felt like such an ungrateful ass for being so upset that a third child wasn't possible, we're lucky to have two considering everything we've gone through but like my friend reminded me, wanting more children to love is never a bad thing or something to feel bad about. Loving and caring for your kids is the most rewarding thing in the world and we wanted to share it with another child, how could that be a bad thing. I kept reminding myself that we're lucky to have two kids and a boy and girl at that but even two months later, the want for another baby is still there. My husband wanted to immediately clear out the garage, sell the baby gear and old clothes, try to move on and move on as quickly as possible but I'm still not mentally ready to do it.

It shocks me how hard it's been to let go of it all. My husband hasn't let it go either. He's researched adoption and even the risks of having more children naturally. And then it hit me...we have an option, a fairly safe option...adopt an embryo! We considered the idea of adopting out any healthy embryos we had left, why couldn't we now adopt one ourselves? It's basically an option for people like me who can safely carry a pregnancy full term but can't create a healthy embryo of their own. Similar to traditional adoption but you can experience pregnancy and childbirth and you have control over your pregnancy and health care, unlike traditional adoption. The idea opened up an option but also left us with more questions. So we're asking questions and considering the option.

Tuesday, April 26, 2016

Birthdays, D&C and still recovering...

Happy Birthday Ladybug!
My baby girl turned 2...I can't believe it! She's smart, stubborn, confident and best of all, the comedian of our little family! There are days that she makes me want to pull my hair out and the next, she's all smiles and wants nothing more than to make us all smile and laugh. Luckily, she keeps us smiling more than anything and no matter what, at the end of the day, she's perfect and I wouldn't change anything about her. A month later I turned 38, I can't believe that either! It's been a rough 6 months but my birthday made most of it fade away. I had an amazing few days with family and friends, eating, laughing and even enjoyed a day at Disneyland with my family, it was perfect. Then a few days later, reality set in again.

My HCG never made it to zero. It finally made it to 8 and then BAM, back up to 32! My Gyno was shocked and at a loss for words. We were so close! I was still not feeling well, still having irregular bleeding and feeling like this was never going to end. It was time for a D&C. Things had taken their course long enough, it was time to end it once and for all. It wasn't ideal but I'd had enough.

My Gyno decided it was best if I had a Hysteroscopy to get a better look at my uterus but agreed that it would be followed up by a D&C even if we didn't find anything. I didn't want to go through any of it and I couldn't believe I was going down this path after all these months but feeling so miserable was even worse.

When the time arrived, my husband drove me to the hospital. I was given some anxiety medication, signed consent forms and then waited for the anxiety medication to kick in, which thankfully didn't take long. A doctor I'd never met was taking care of me and she seemed very thorough and calm, something that was very reassuring. Unfortunately, everything after our short talk seemed to take forever and the pain kept coming. Vaginal shots, cervix dilation and what felt like countless scopes and tubes being prodded and no amount of talking or words of encouragement helped. I've heard how horrifically painful D&C's can be and frankly, it was the easiest part! My husband was sitting next to me the entire time, comforting me and at times his expressions gave me a sort of heads up for the pain I was about to experience.

We watched everything on a small TV. Found the opening to the fallopian tube on my right side, the scar where the opening for my left tube used to be and then nothing but a very healthy uterus. Nothing to indicate why my HCG wasn't going down, nothing to explain why I was still feeling so miserable...nothing. Everything looked healthy and perfect. Usually that would feel reassuring but this time I felt exhausted...there weren't any obvious answers. I needed answers and quick solutions. We proceeded with the D&C anyways, at my Gynos request, followed by more prodding, more severe pain and a cup filled half full with blood that we hoped would solve everything. The doctor left me with some comforting words and sent me home to rest.

A few days later I received an email letting me know I was completely healthy...no cancer, no precancerous tissue or even leftover pregnancy tissue was detected. We followed up with another HCG test the next day and finally...zero! It's only been 11 days and I guess I'm slowly feeling better. Even with the results, my Gyno is convinced that there was simply a tiny piece of pregnancy tissue leftover from one of my recent miscarriages. Even the most microscopic piece can linger and cause problems. Through all of this, we still have to wait. Wait for my periods to normalize again, hope all of this worked and then in 3 months, if I'm crazy enough, we can try again. For now, I'm taking things day to day, enjoying my family and doing what I can to feel "normal" again...the rest will have to wait.

Saturday, February 13, 2016

Another miscarriage...

After a month of bleeding from my miscarriage in November, December passed by quickly with a celebration for my friend's wedding in New York and then back to California for Christmas. No complications or serious bleeding. Then January 8th rolled around and things started to change. I started bleeding again, more than 2 weeks before my expected menstrual cycle. More headaches, drowsiness, bloating. At first I thought it was just the "irregular bleeding" my OB had warned me might happen over the next few months and when it slowed down, then stopped a week later, I let it go. Then 3 days later the bleeding started again. After another week and a half of bleeding and severe headaches, I called my OB, I'd had enough. His nurse said the irregular bleeding could last up to 6 months but when I'd told her I'd been going through this for several months before my miscarriage, she agreed that I needed to see the doctor and possibly have a biopsy to make sure there wasn't something seriously wrong.

On January 29th, my husband left work early and drove me to the OB. You have to take a pregnancy test before any biopsy, standard procedure but what threw us for a loop was that it came back positive! We were speechless, even my OB was shocked! I'd only been back on birth control for 2 months, so we all agreed it wasn't 100% but I'd always used it to control my hormones, I never actually needed it to prevent a pregnancy!

Instead of a biopsy, we were now being prepped for an ultrasound. You hear stories of people getting pregnant "naturally" after going through years of IVF but I was on birth control, I only have one fallopian tube to get an egg to my uterus and sex wasn't exactly at the top of our "to do" list after a miscarriage, traveling and the holidays...it didn't seem possible. And then we saw it, a sack! "Oh shit!" was literally the only thing I could say. It was overwhelming! Joy, fear and shock were running through my body, followed by a million questions. Was I seriously pregnant or was this leftover tissue, was this pregnancy going to be healthy...I'm almost 38, holy cow did my eggs finally soften enough to really be pregnant...what next?!?

"This is either a VERY early pregnancy or you were pregnant but it's abnormal and you're going to miscarry again. Let's run an HCG and progesterone test and we'll go from there," was my OB's response. We went straight downstairs, drew some blood and told our parents what had happened. No one knew how to react...mostly we didn't want to get too excited. Blood work came back the next day confirming that I was pregnant but chances that it was a healthy pregnancy were low because my progesterone count was almost nonexistent. We ran the test again 3 days later and it was clear this wasn't a healthy pregnancy. My counts had only risen to 197 when they should have been well over 300, not a good sign.

The next day I was back at the hospital, this time for another ultrasound to find out what was really happening. They only confirmed that there was something in my uterus but it was time to find out if it was leftover tissue from the previous pregnancy or if it was in fact a second abnormal pregnancy. Finally, on February 3rd my husband and I were back in my OB's office for a biopsy but for completely different reasons. I never expected a biopsy to be easy but I never knew how uncomfortable it could really be and I'm glad it didn't last any longer than it did! The only good news was that the irregular bleeding should stop soon enough and we'd essentially be giving my uterus a bit of a fresh start. The next day my OB's diagnosis was confirmed...it was an unexpected abnormal pregnancy and all of the bleeding was the beginning of another miscarriage.

Now, 10 days later, I'm still lightly spotting, headaches come and go but it's the pure physical and mental exhaustion of a miscarriage that is knocking me on my butt. I still have to have my HGC count checked every week until it hits zero...last Monday was at 99, so I'm hoping zero isn't too far off. I'm trying to rest and move on but I can't help but think of the next step. Clearly we CAN get pregnant naturally now but should we? I'm almost 38 and my husband just turned 42...what are the possible complications that come along with our age? Do I even produce enough hormones to sustain a natural pregnancy? Do we try to get pregnant naturally and possibly face another miscarriage or wait until May like we'd planned and try another embryo transfer that's closely monitored? Maybe this was all a one time thing, maybe we'll never get pregnant on our own again but at least we know there's even the possibility of "maybe." We have options that we've never had before and it feels confusing and a little overwhelming but exciting at the same time. For now I need to rest, let my body heal and when the time comes we'll decide what feels right for us.

Sunday, January 3, 2016

No replacement, miscarriage and a 3 Year Old...

It's been so long since I've written anything on this page, I even forgot my password!!! Luckily I figured it out, so it's time for an update!

Going all the way back to April, my doctors decided that even with all of my shoulder pain, a replacement would be a bad idea. Unfortunately, shoulder replacements don't last as long as other joint replacements and when one wears out, another has to take its place. Every time you replace a joint, you have to cut away at some of the existing bone and the more often you have to replace a joint, the more the bone is cut away and ideally I'm going to live long enough that I'd take the chance of cutting away too much bone until nothing is left to work with. You also take the chance of losing a little mobility every time you have surgery, something I'm already having trouble with. So it was recommended that I take it easy, don't lift too much and keep my shoulder as loose as possible. Keeping my mobility has been tough but taking a break from lifting did help with some of the pain. For now I'm trying to keep as much mobility as possible and eventually I'll be working with a physical therapist to retrain my muscles and ideally gain even more mobility. Easier said than done but I'll get there.

Even with all of my shoulder issues, my husband and I decided to try for baby #3 this past September. The transfer was successful but sadly I had a miscarriage in early November. Nothing traumatic happened, the baby simply stopped growing. I knew something was wrong pretty early on but we kept holding out hope. My HCG counts weren't increasing as quickly as they should have and by our second ultrasound we realized the embryo stopped developing. It hit harder than I expected but we're doing better now. It was a long process but fortunately I didn't have to have surgery this time. I had to take Misoprostol, a medication that assists by helping the tissue pass more quickly. I had to take it twice because some of the tissue didn't pass the first time but eventually it did it's job and I didn't have to have surgery or stay in the hospital, I was able to let everything pass at home. I was fortunate enough to go through all of it without much cramping and pain but it all took it's toll and drained me of any energy I had. My family was extremely supportive through all of it and helped out even more than usual. We can try another transfer at the end of this month if we want but I think I need more time to recover, work on my mobility and strength and just feel healthy again.

I decided to give Enbrel another try. I've been on Prednisone for about 5 months now and I've had enough of the puffy face, short temper and countless side effects that come along with it. There's always a love, hate relationship when I take Prednisone but unless I'm pregnant, the benefits aren't worth it, so back to Enbrel I go. I've only taken the Enbrel for 2 weeks and I've noticed a little improvement bu I know it will take some time for it to really kick in. I'm still weening off of the Prednisone and it's going to take longer than I'd hoped. My doctor wants me to take a full 4 months to ween off of it...not going to happen but I'll take it slow so I don't completely crash and burn. I'll probably ween off of it in time for another embryo transfer and have to start the Prednisone again but even a tiny break from it is appreciated.

On a more positive note, my little man turned 3, I can't believe it!!! We had a great day celebrating with family, friends, Thomas the Train, Lightning McQueen and Minions. He could decide on one theme, so we combined his three favorites. He's trying so hard to gain his own independence but still wants to be the baby as well. He has a hard time balancing it all some days and tests our patience along the way but we're all learning together and trying to keep our sanity as much as possible. He's still the sweetest little guy I know and even the craziest days are worth it...especially when he lets me rock him to sleep. The last few months as a parent have been completely exhausting emotionally and physically but I wouldn't change a thing...we're beyond blessed!

Wednesday, April 1, 2015

1 year old and a shoulder replacement...

Our little family
I can't believe my baby girl is already and year old! She's walking, slowly but steadily and babbles 24/7! She still adores Jimmy and loves playing with him but also loves her alone time with her books. She's a crazy little girl and she keeps us busy but she makes us smile and laugh through all of it. I'm so incredibly proud to be her Mama!

Jimmy's doing well, he'll be two and a half this month which is mind-boggling to me! He's an amazing little guy and still such a love-bug. Everyone warns you about the Terrible Twos but so far, he's minor. He fusses about eating but only about having to eat. He'll eat anything you give him, even his favorite, broccoli but he'll take forever to do it or sometimes whine that its on the wrong plate or that you gave him a spoon instead of a fork. Random weird stuff...just because he's 2. He still has trouble sharing some days but Time Out has been a lifesaver and he still wants to be treated like a baby from time to time but he's starting to realize that babies don't have as much fun as big boys.

And then there's me. Ugh. I've been taking Enbrel for almost a year I think and I've had enough of it. It makes me feel better...less stiffness and pain but I hardly ever take it! I started having problems, too many infections and colds, so my Rheumy recommended doing my injections every 2 weeks instead of every week. Started out well and then the kids came down with Croup. I ended up with some form of it and I had to stop taking my Enbrel again. When I finally felt better, I did my injection and a week later I came down with a sinus infection, so I stopped my Enbrel again. Now I've been 2 weeks without an injection, still have a sinus infection and just started my second round of antibiotics which means no Enbrel for at least another 2 weeks. And this is the cycle I've been on since I started taking Enbrel last year. So as grateful as I am that my counts have come down, It's just not worth it if I'm sick more than I'm well. I meet with my Rheumy next month, so I'm thinking we'll just continue with my NSAID's and steer clear of anything else for a bit.

I started having a lot of shoulder pain last month, this time in my right shoulder and just found out yesterday that I tore a muscle(s) in my shoulder and that a total replacement is in my near future. Not the diagnosis I was hoping for, especially with two little ones to look after but that's the joys of having joints like a 90 year old. The specialist I met with wants to consult with a couple of other surgeons before we make any plans but he's pretty confident that they'll agree with him. I'm pretty confident they will too. I have to take it easy, stop lifting heavy objects (mostly my kids) and let my muscle(s) mend as much as possible and then in a few weeks we'll try a cortisone shot. My doctor is hoping that my Enbrel will wear out by then and my chance of infection with the shot will be a little lower. If all goes well, he's figuring we'll wait for the muscle(s) to mend, try physical therapy to get as much range of motion as possible and then surgery. I lost a lot of mobility when I had my left shoulder replaced, so I think they want to keep my right moving as much as possible before they do anything. I'm praying for the same. Anxiety set in with the idea of having another replacement but what can you do. It has to be done and the sooner the better.

Monday, November 24, 2014

So tired...

Things have been so busy lately that I feel like I'm falling behind on everything, especially updating things here. My little guy turned two last month! I can't believe he's already two! There are days that drag on and I wonder if I'll ever get through them and then in a blink of an eye, days and weeks have passed. I remember being so nervous the first night we were home alone with Jimmy and now he's running around like a little man, talking, trying to make his little sister laugh, he's everything I could have hoped for and he reminds me everyday how blessed we are to have him.

Little Ruby is doing well too. She's been doing an army crawl since she was 6 months old and now two months later she's taking a few strides on all fours and can sit up on her own but doesn't do it very often because she's too busy trying to keep up with her big brother. I can't wait for her to start walking but I know she's going to follow Jimmy everywhere. Fun when he wants to play with her but I know he'll have a hard time with it too. He loves her but is quick to let everyone know when he's had his fill of her and needs his space. Ahh, the joys of siblings. hee hee

Ruby's increasingly harder for me to keep up with but she doesn't wander as much as Jimmy did because she wants to be wherever Jimmy is, so that helps. It's also been great having family with us during the day to help out because things would be very different without them. I always knew the first couple of years with a baby would be tough physically because of my JRA but it will pass and it will be worth it. Do I want a third child like we'd always planned? That's still something I need more time to decide.

I'm finally getting used to my finger being fused and there's no pain but it does get in the way from time to time still. Nothing unexpected though and I don't regret having the surgery. My Arthritis has been doing pretty good with random days of discomfort but mostly days that I saw coming. We took Jimmy to A Day Out with Thomas for his birthday and even though I felt great the whole day, I paid for it that night and the next day. After a day of walking and standing, my right ankle just throbs with pain. It's sharp stabbing pain along with what feels like severe cramping and no matter what I do, I just can seem to escape it. The pain lessens over a day or two but it's enough to keep me off my feet until it goes away completely. I'm still taking Enbrel and Nabumetone and they seem to be enough to get me through a typical day but it might be time to take a closer look at my ankle and try to figure out why it can't keep up with my other joints.

Aside from the everyday pain that comes with JRA, I've been exceptionally tired. I'm sleeping well at night and fall asleep almost as soon as my head hits my pillow but it seems like no matter how much sleep I get, it's just not enough. I visited my doctor thinking maybe my iron was low or I had something going on that I wasn't catching but everything came back normal and my doctor just put it off as lack of sleep. Luckily my husband has been very understanding and after we put Ruby to bed, I go to bed too and my husband stays up a bit longer with Jimmy and then puts him to bed. I've been going straight to sleep without trouble, sleep solid through the night and nine hours later, still wake up tired. I feel like something is off, something is going on that we're not catching but I have no clue what it is. So for now I'm resting when I can, sleeping when I can and hopefully things will get better. Maybe it's is lack of rest, maybe it's too much rest and not enough exercise, I don't know. It's just one of the joys of JRA I suppose.