Health coverage has been a fight for me my entire adult life. I’ve gone from not having any health coverage and wracking up the horrendous ER bills that gives you. To now having health coverage that doesn’t cover my specific health needs. At no point in my adult life have I had health coverage that has actually provided me with the care I needed.
Recently I have reignited my fight for infertility benefits. I work for a company that has over 500 employee’s and offers an adoption credit. So why don’t I have some sort of infertility benefits? I called the third party HR company we pay to manage our benefits, they claim that comprehensive infertility isn’t even an option for them to choose from Aetna. So I called Aetna and Aetna claims it is my company that isn’t opting for it. So I call HR again and ask what is preventing them from offering comprehensive benefits. They again say it is on Aetna.
At this point I drop it for a few weeks because I just can’t deal.
After a few weeks, my annoyance is renewed so I start the circle again. This time I start out with Aetna. They again say it is a choice my HR company is making. I tell them I’ve already traveled this path, so I need this escalated on their end. They decide to 3 way call into my HR company and confront them. After about an hour discussion, the HR company says they have to escalate it. I hear back about 2 hours later from that internal person.
I go back and forth with the internal person. He says they have the option to offer it, but they don’t as it isn’t cost effective. Aetna had since told me that they could offer it for just my personal plan, all the HR company had to do was contact them. After days of back and forth on my end, the HR company finally calls Aetna. Aetna then turned around and said the representatives were mistaken. My HR company has to offer it to everyone.
So now I am back at square one. Aetna lied to me about the ability to add comprehensive infertility benefits to just my plan. My HR company won’t offer me coverage, even if I will pay for it. They also refuses to budge on it or escalate it further within the company.
So for now, I will just be calling them weekly. I’ll remind them that denying me equal access to my needed healthcare will just cost them more in the long run. Right now it would seem they would rather undertake costly cancer treatment for me, then pay for my IVF. Seems downright ridiculous to me.
My weight has always been an issue. Since I hit puberty I have always fit under the category of obese. Activity level made a slight difference, but I’ve never been a size 2. I was so distraught in high school over my weight my Dad sent me to a nutritionist. This is the woman, who told me in the kindest manner possible, that I was just never going to be a size 2. I could be thinner, but never would I be rail thin, as I just wasn’t built that way. Satisfied by the nutritionist I let it go.
All in all (high school not included), my weight has never been a huge issue to me. I like myself, I feel pretty, so I’ve never let it be an issue. For me beauty isn’t about what size I wear, it’s about how confident I feel about myself. I’ve packed on alot of weight since my ectopic and starting fertility treatments. The majority of it is from comfort eating. I like to eat my grief, because it feels better then crying.
In an attempt to change things before my next transfer, I decided I would try something new. Counting calories and going to the gym has just never worked for me. I would follow it for a couple of months and see 0 movement on the scale. So after some research, and speaking to my RE, I decided to try a ketogenic diet. What this means is that I eat a high fat, medium protein, low carb diet. I try to keep my daily carb intake under 50 net carbs.
So far the hardest thing for me to give up has been sweets. I thought for sure it would be pasta or bread, but nope, it’s been the occasional sweet. In particular, ice cream. I do have my bad days, and I just let them happen. I let it go and move on to the next day and just don’t punish myself for it.
The other aspect to this of course is that it’s a mental struggle. Part of the choice for me is that so much of what I want my body to do is out of my control. But, I can control what I eat and how much I weigh. So in a way, this weight loss goal has also given me a way to have some control over my body again. Especially at a time when I feel like my body is failing me.
FitBit weightloss log dashboard.
So far I have lost 31.6 lbs. For the first time in my life I feel like I have found something that works for my body. My goal right now is 200 lbs, and I’ll go from there. This is definitely a lifestyle change for me. I get to eat things I like the majority of the time. I do indulge my desire for pasta or a potato every now and then and I just account for it the rest of the day/week. I’m just working on getting accustomed to the change in what I eat.
Anyone else out there follow a diet like this? What diet related lifestyle changes have worked for you?
In the lead up to Giving Tuesday this year, RESOLVE has invited bloggers to write about a specific topic each month prior to December 1, 2015. October’s is RESOLVE to Give Voice. If you would like to participate, you can find more information at the RESOLVE Giving Tuesday blogger information page.
Giving Voice to my Infertility Story
My story is like that of many others. Since I was a small child I dreamed of growing up, getting married and having a family. I tried for three years with my ex-fiance to no effect- he suspected he had issues, but it turned out he doesn’t. After we broke up, I met the man I was actually going to marry. We decided to throw caution to the wind and to not try, but not prevent. A couple of years went by with nothing happening. I knew something was amiss, but at the time I lacked the coverage needed to see an RE, so we were on our own. A couple of years after that, having finally secured coverage, I got to see an RE, and we started the treatment process.
I got in to see an RE quickly, went over family history, my health history, and my sexual history, had about a dozen blood panels, ultrasounds, HSG, etc. I’d just quit smoking again using Chantix, so my RE recommended I come back in 3 months to finalize a treatment plan. During this time, I got a call from my RE that my husband and I both look great on paper, and he set my followup appointment for May.
When May rolled around, I went to my appointment to get the ball rolling. Upon talking to the RE, he wanted to do an ultrasound, and during the ultrasound he found a large cyst on my right ovary. The cyst was actually so large he wanted me to start birth control with my period which was due any day. He also took several more blood samples to run yet more tests. Later that day I got a call from his office telling me I wouldn’t need the birth control, that I was actually pregnant, and that I needed to come in the day after tomorrow for another blood test. I went in for a second blood test, and that was when things went sideways. Two weeks after that date I was in surgery for an ectopic pregnancy. It turns out the HSG had opened my severely scarred left fallopian tube, which ended up causing an ectopic pregnancy. During surgery I had my cyst drained, and my tube and baby removed.
Three months after that I was back on the horse, ready to go. The plan over the next several months was to use clomid or letrozol to try and force my right ovary to ovulate, then to have an IUI. Several months went by however with only my left ovary responding to the medications. During this time frame I also switched RE’s twice, trying to find the doctor with the best bedside manner for my needs.
I was finally able to do an IUI in February of 2014, resulting in a negative test. At this point my RE told me that my best option was really going to be IVF. So, I stepped back and began saving the $$$ needed to attempt a round of IVF.
‘Insurance’, throughout all of this, has only ever covered appointments, bloodwork and ultrasounds for me. My IVF, IUI, and all medications related to those cycles are all paid 100% out of pocket by my husband and I.
To afford IVF, I started with research and outreach, and through a friend on Twitter I found a clinic in Syracuse, NY that has affordable IVF plans, which also do not require credit. You pay half upfront, and the other half over the next 12 months. My husband and I saved, did odd jobs, held garage sales, and had a GoFundMe page, and in the fall of last year I had my first round of IVF.
Luckily, I respond well to the medications, so low doses work well for me. At retrieval I had 17 eggs, 10 of which were mature and 9 fertilized. We had 2 for a 5 days transfer and 2 to freeze. Sadly my fresh transfer resulted in a negative, just as the IUI had. A month and a half later, I had my frozen embryo transfer, which resulted in a negative as well.
At that point I went back to my RE and we pored over everything. We decided at the time that I would consult with a local endometriosis specialist, as I had symptoms and a family history of endo. We decided to schedule excision surgery before I did a second round of IVF. I had my laproscopy in June of 2015. During my lap, instead of endo they found several serous cystadenoma with borderline malignancy, in other words, tumors. Luckily they were not cancerous, but they were irregular- they were tumors normally found on your ovaries, that were instead on my pelvic wall.
What this now means for me is that it is recommended that I undergo a full radical hysterectomy as soon as I can. These tumors will grow back over time, and have a 30% risk of being cancerous when they do grow back. The only way to prevent regrowth is for my uterus, both ovaries, and my cervix to be removed. Seeing as how I am still trying for children, I have been cleared to continue trying for the time being, so long as I have CA125 bloodwork and an MRI every 6 months.
This leads me to today. Nine long years have passed since I first started trying. Time is not my friend. Even more than with ‘normal’ infertiles, it is my mortal enemy. Whereas most are racing against the standard loss of fertility that comes with getting older, I am racing for my very life. The biggest struggle in my infertility journey is dealing with knowing just how much time each step takes. It would be bad enough even if it didn’t take a year to save enough to afford the cost of treatment. Mentally, it is crippling. Each round still costs anywhere from $10-15,000 (a full year of in-state tuition for the child I might have!) out of pocket including medications and travel. I am now in a financial race to beat the clock, and I’m still losing.
One thing I think I have skirted around since my surgery in June is the reality of my situation. That reality being I am currently at a 30% risk for ovarian cancer. It’s easy for me to ignore in day to day and to downplay the very serious nature of that risk.
Then I go to a doctors appointment and the discussion of what my plan is happens again. I get the stern face when I tell them I have a plan, but that plan still involves IVF. For right now, I know all of my doctors are okay with my every 6 months CA125 bloodwork and MRI. I also know at some point that will no longer deter them. I know that if I were done having children (which counting from when I started trying I should be!) I would have had surgery for a radical hysterectomy months ago.
But I’m simply not ready to give up. I want to experience pregnancy, I want to have the family I envision.
The other sad part in this equation is the fact that there is only one thing standing between me and my next round of IVF, my lack of insurance coverage. Right now $2500 worth of medication is what stands between me and doing another round of IVF.
So at the end of the day, the fact that my insurance company does not cover my current disease gets a large portion of the blame. If they covered IVF, we would have been through all of this YEARS ago and been done by now most likely. But instead I have to wait years between each try, extending the risk further and costing them more in screening me for cancer. Makes a lot of sense, eh?
The above .gif has become my mantra in my professional life. A lot of people constantly wonder what it’s like to be a woman in tech, and it boils down to 1 of 2 things:
- Be assertive and be a “bitch”
And I mean this in the kindest fashion. If that’s possible. Being a woman in a male dominated field, those are essentially your choices. Or at least your choices as I see them. It’s been my personal experience that any time I assert myself, I am initially viewed as being bitchy. But I refuse to be taken advantage of, or to back down. Because of this, I end up being viewed as bitchy. That’s okay.
How do we fix this? I’m honestly not sure. I just know that’s been my experience working in a male dominated environment, and coming to terms with it has been freeing. They might think I’m being a bitch, but they also respect me, and that’s okay by me.