Life kept me from updating for another year, but now I'm waiting to have surgery and thought it might be a nice opportunity to revive Curly Bones. I've been struggling with pain and discomfort in my right ankle for several years now and I finally found a surgeon willing to help. In August I will be having a "Hindfoot Triple Arthrodesis" that will help align my right leg with my foot, fuse multiple joints and if all goes well, keep me pain free! Anxiety has kicked in, but I know it needs to be done. I'm hoping to spend this Summer running around with my kids and having as much fun as possible because recovery is a minimum 6-8 weeks non-weight bearing and life will quickly come to a standstill. We plan on renting a recliner that I can sleep in, have several pieces of medical equipment from previous surgeries and I'll have plenty of entertainment from books to revisiting old TV shows. I even bought a loom in the hopes that I'll enjoy learning how to loom knit. I loved posting about our experience with IVF and had some great responses from other families who struggled with fertility, now maybe I can be a bit of a support for others going through tough times with autoimmune. I'll do my best to update about my experience as much as possible and hopefully it'll be therapeutic along the way.
Living with JRA
Monday, May 30, 2022
Friday, February 5, 2021
Hoping this works!
So I decided it was time to give Curly Bones more of my time and attention but in the meantime, I've changed my email, had surgery and am now trying to recover. Recover from surgery and a change in email address. I lost Curly Bones for a bit in the middle of the change and I'm hoping things are back to normal again! Let's see if this works!
Sunday, January 17, 2021
Almost four years
So much has changed since my last entry, especially in the last three years. We've spent the last 10 months staying as close to home as possible to avoid COVID and the two years prior to that we were caring for and grieving the loss of multiple family members including my Grandma, my Dad and my Aunt. I often thought about Curly Bones and whether or not I should just let it go all together but I can't bring myself to do it and would love to find a new direction for it. It all started as a form of venting about and celebrating our journey through IVF but that time in our lives has passed and raising two kids took over any free time I had. I've considered writing about raising kids with my JRA, tools I use a daily basis or even just a public journal about living with JRA. Because of COVID, my husband is now working from home, the kids are doing Distance Learning and my alone time is almost completely nonexistent but I find myself needing a project. So maybe Curly Bones can help fill that void. I'm still not sure where I want to go with it but I'm hoping I'll slowly figure it out.
Friday, May 19, 2017
I'm horrible at this...
We had family visit from out of the country on two separate occasions so we've spent a lot of time at Disneyland, the zoo and which every mall we happen to be passing by. The last couple of months have been a blur because of it but we had a great time. My oldest is finishing his first year of Preschool next week and then both of the kids will start attending school together in the Fall. Summer break will be welcomed in our house but I'm sure the time will pass quickly and it'll be school time again before we know it.
My health in general as been better but a bit of an experiment for almost three months. I've been testing for ovulation every month because of hormone issues I was having and so far we've figured out that I'm in fact NOT going in to early menopause. Good news for a 39 year old and so far stopping birth control has fixed some issues I was having. I've taken birth control for years to help regulate my hormones but it seems it was causing more problems than benefits since having my kids. So for now I'm off birth control and my husband and I are debating whether or not we take advantage and try naturally for baby #3. Whether we try or not tends to be determined by how our kids behave that day. We had a great day, let's try...they we're out of control today, 2 kids is enough and we're done. hee hee
I've also worked hard to change my diet and I do my best to stay true to Ketogenics. It's not always easy but because of it I've been able to stop taking NSAID's completely and am able to get by on a weekly dose of Enbrel and the occasional dose of Tylenol. When I stay true to it, I feel more energetic, stronger and I can get out of bed in the morning without having to stretch and move around for an hour, something that's hugely beneficial with two toddlers to take care of. Because of Ketogenics I'm also able to take care of my kids on my own without help while my husband works. It's been a great feeling of accomplishment and even though I appreciated the help from family, it's been a relief to everyone to see that I can do it on my own. I don't always get enough done or at least everything I'd like to do but I'm working my way up to it. I've encouraged a few friends to start Ketogenics as well and they've seen huge improvements in their inflamamtion and one friend has even made huge strides with her MS. It might not be for everyone but If you're struggling inflammation and autoimmune diseases, I highly recommend it and have a few resources I'd be happy to share with you. I'm done sounding like an infomercial now. I hope everyone is doing well and enjoying life.
Tuesday, January 24, 2017
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
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 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.