Ramblings, musings, and attempting to find humor and joy amidst the frustrations of life with Crohns Disease and Infertility.
Wednesday, March 20, 2013
It's been a while...
So much has happened since my last entry. Some good... some not so good. I'm trying my very best to roll with the flow and live with a more positive outlook and expectation, but I've gotta be honest... sometimes old habits die hard.
When I last wrote, I went into the insurance bombshell that was dropped on us and we've since had to let our COBRA go. It was hard to do and really heartbreaking for me. Even though we didn't have enough coverage left to pursue IVF, it was just hard to let go of what little bit of coverage we did have left. It felt like watching sand slip through my fingers. I think that really took a lot of the remaining wind I had left, out of my sails.
I felt really depressed about it all... like my last shot had just gone up in smoke. I pretty much withdrew... I stopped going to my message board, I stopped commenting as much in Facebook groups with TTC friends... I just kinda disappeared. And the thing that made me feel more depressed was that it appeared as though hardly anyone noticed.
If I'm being completely honest... the vast majority of them have been blessed with pregnancy, so their lives are certainly filled with lots of other things. Diapers, bottles, strollers and for some... second babies and even surrogate babies. I get it. infertility, if it was even a part of their journey, is now in their rear view mirror and while I'm happy for them, it still feels sad and lonely to be left behind and never even get the occasional email or text to say "You're not forgotten" or "We remember"...
I still haven't gone back to the message board... Part of me wonders if I ever will. It just isn't the support for me that it used to be and after 4 years, you get a little tired of reintroducing yourself and retelling your story every few months because the folks who knew you are in Due Date Clubs now.
Danny has since moved on to a new job. It's really excellent and his future looks so extremely bright, I couldn't be happier. The company is European and his benefits package reflects it... lots of vacation time, sick time, personal time, Bank Holidays, etc... and he's really respected, which is the most important.
As it stands now with regard to our TTC... any further procedures will be on us. We no longer have any insurance coverage for our infertility. It's a pretty horrible feeling to know that you've got a disease, are insured and can't get treatment for it. Maybe because infertiles live, we don't have visible signs of disease, you can't tell by looking at us how riddled we are.
We know it's likely IVF or nothing for us. I would love a surprise natural baby, but after crossing the 4 year threshold, it's time to wrap my head around it. We were thinking about pursuing Shared Risk, but by the time we'd have the funds available to do it, it looks like I'd be past their cut off age for using my own eggs. Since they guarantee you a baby or your money back, they have an age cutoff. I don't know if that's something that is determined on a case by case basis... like if I had rockin' egg quality at the time if they'd let me use them or not... But at this point, I'm going to take them at their word (39 or over only with donor eggs).
It looks like our best bet is going to be a Multiple Cycle option. This has no age restrictions, but there are also no guarantees. Basically, for the Multiple Cycle deal, you get 2 fresh IVF cycles, unlimited FET's and the freezing and first year's storage of any snow peas. The thing that has me most hopeful is the fact that their FET success rates are almost identical to their fresh cycle rates. There are a couple of great things about that... 1) we wouldn't feel compelled to transfer a higher number of embryos in an effort to "maximize our chances", 2) we wouldn't have as much worry about multiples and 3) for argument sake, say after our 1st fresh cycle we had 4 snow peas... we could, theoretically, do 4 FET's for FREE before even beginning the 2nd fresh IVF.
I haven't gotten any numbers or costs yet, because I don't believe we'd be financially ready to go that route this year. We're trying to lower our outgoing bills to free up some savings; changes to where we buy food, more fuel efficient car with a lower payment, etc and Danny's job is bonus eligible... so we've earmarked his first bonus for IVF.
We wanted to take a trip somewhere, but have decided to keep it local to help with the savings. Instead, we'll do trips to the beach, Hershey Park, Great Adventure or Dorney Park. I'm hoping to make a trip to Washington, DC for the RESOLVE Advocacy Day on May 8th. It's a day full of training, information and appointments with your senators and representatives to let them hear the voices and see the faces of infertility, to ask for their support with The Family Act which would provide tax credits for out of pocket IVF costs & fertility preservation for those with cancer or other fertility threatening diseases as well as the Women Veterans and Other Heath Care Improvement Act, which would provide access to fertility treatment for severely wounded veterans and their spouses by the VA. These folks put their lives on the line to defend our dreams, the least we can do is help them realize their own.
I haven't registered yet because I want to be certain I can make it. I don't want appointments in my name to have to be cancelled because of an oversight or something. I'd also like to see how many points we've earned on our Amex and if I might be able to use some of them for the trip.
I'm also thinking of attending the Walk of Hope on June 22nd.
I think it might be really good for me... Remind myself that I'm not as alone as I feel and that I might be able to make a difference.
Thursday, September 13, 2012
One Prairie Outpost...
Just when I thought everything was finally going smoothly... the rug, is once again, yanked from beneath my feet. It really makes it difficult to retain an optimistic mindset at times. Much has happened, so you may wanna get a drink and a comfy spot or just skip this altogether. It's gonna be lengthy, so it's your call. I know there are some folks who actually have been wondering what's up with me and I've also made the decision to start trying to write more candidly about this experience. I find the act of associating honest words to the feelings coupled with the physical act of weaving those thoughts and feelings into a coherent literary tapestry quite cathartic. This is MY journey and I need to claim it. That being said... here we go:
So Danny and I decided, after meeting with our RE and coming to the decision that our next step would indeed be IVF, we would take the cycle after our IUI off. We were told I'd have to undergo yet another hysteroscopy and do a Mock Transfer beforehand, so we thought taking a cycle to absorb everything would be a good idea.
The days got away from me a bit, what with my mom having knee replacement surgery and family visiting from out of the country, so by the time I called the IVF Administrator, I was already on CD 4. I wasn't terribly bothered because I knew we still had our IVF consult to do yet and there was no way they'd be doing anything with this cycle before that was done.
So I have my first call with Janice (IVF Admin) and she sees that I have Aetna insurance. She informs me that Aetna follows a "lesser then greater" rule; meaning that they require a patient tries less aggressive treatment before moving on to the more aggressive. This is news to me, as my previous RE's office certainly never informed me of this fact, but it makes sense.
She sees records from my most recent IUI and I tell her that I'd done 3 others with another practice. She asked if they were on injectables as well, to which I replied "No. Two were natural and one was on Clomid."
Silence.
She finally says "I'm gonna be perfectly honest with you... they may not accept that. Generally speaking they want to see 3 IUI attempts with injectable meds before granting approval for IVF." My mind starts to race. She says she'll call Aetna on my behalf, see what they have to say and call me back.
While I'm waiting for the return phone call, my face starts to burn. I start thinking about the 2 natural IUI's we'd done and how it appeared they weren't going to "count" in the eyes of my insurance company. I started to feel angry with my previous RE's office for not being as thorough as my current one.
I thought back to the appointment I'd made with my previous RE after our failed IUI with Clomid, where I specifically asked about adding injectable meds to the next IUI... and he dissuaded me telling me it wouldn't help and that IVF should really be our next step.
Well, if we'd stayed in his care with the intentions of following his advice... we'd have been S.O.L. because Aetna would NEVER have approved an IVF cycle after 2 natural IUI's and 1 on Clomid... as I had just learned during the FIRST phone call with the IVF Admin BEFORE she even made any phone calls. It was literally like she looked at my file, saw the name Aetna and her brain said "Ah, they have blah blah blah requirement" I mean, why didn't anyone at my previous RE's office know that?
Janice called me back about 10 minutes later. She told me that she'd explained my situation and Aetna wanted to see my medical files. She asked if Danny had a semen analysis done, to which I said he had. She asked if it was normal and I said it was. She asked if I'd had an HSG, to which I said I had. She asked if it was normal and I said it was not.
I explained that my first HSG revealed a blocked right tube which led me to have laparascopic surgery, during surgery my left tube was found to be tangled and folded over on itself as well, so all of that was corrected before we began with our IUI's.
She told me this could possibly work in my favor, as they have a tendency to make exceptions to the treatment requirement if there are or have been other "problems". Um, Yay...? She said she was sending my file over and that she'd have an answer for me in a day or two. The next day, I received a phone call telling me that Aetna had determined that I'd been through enough and that they had approved my IVF cycle!!
She scheduled us for our IVF Consult on Sept. 7th at 9:30 am, told me the contracted rate for IVF is $7950 and that our portion would likely be about $1500 (20%). I was so elated and happy!! My spirits soared and I felt the mixture of excitement and anxiety beginning to build. I thought about the increased shots I'll be taking and how sore my ovaries felt after our last IUI. If I felt that sore after that little bit of stimming... I knew I was gonna be in for it with IVF.
But as has been the fashion with this journey, hopes are often built only to be dashed in the blink of an eye... Two days later, I received a phone call from Janice. She was looking over our coverage and was concerned that I thought we had more coverage than we did. NOT what I wanted to hear.
I told her the Aetna rep told me we had $10,000 in coverage for IVF when I called to change practices... She was seeing that we had a little over $3000 left. She said she'd email me what she was looking at so that we could call Aetna and find out what was what. I was so depressed, I couldn't even bring myself to open the email and call the insurance company for another 2 days.
To make a long story short, our coverage wasn't explained to me properly... until a few days ago. Naturally. That $10,000 IVF benefit? Yeah, that's a lifetime pool of money for ALL Assisted Reproductive Treatment. So all 4 of the IUI's we've done...? Including the 2 stupid natural ones... they've all been coming out of that $10,000 all this freakin' time!! So instead of being able to do IVF for about $1500, we're now talking about closer to 5 grand!
I know there are plenty of women out there who have to pay all of it, and I'm glad to at least have coverage... but to see what you think you had evaporate right before your eyes...? That's a kick in the teeth. Add in the fact that I'm angry because, had we known our insurance had a treatment requirement and that all ART procedures were coming out of that $10,000, we would NEVER have consented to two natural IUI's. Period.
Can nothing about this be easy? Have I not been poked, prodded and dilated to high heaven? Have I not jumped through quite enough hoops? Can't I catch a freakin' break?!
We had our consult on Friday and got the entire breakdown of what protocol my dr. is prescribing for me. The list includes birth control, Lupron, Gonal-F, Menopur, Estrace, HCG trigger & Crinone... so at least we know what meds we're looking at.
We discussed cryopreservation of any extra embryos, which would be $1000 for the initial freeze and first year of storage... she thought it's about $850 per year after that, but said she'd double check on the exact figure for us.
Should we decide not to use them in the future, she said we could have them thawed and discarded. I asked about embryo donation and she said that was also an option... that we could donate them to an embryo bank, which would be my personal preference. I always wanted at least 2 kids, but at my age... it's likely our family would have to be complete with 1 child, and I would love nothing more than to be able to give another infertile couple a chance at their dream.
We discussed some of the insurance problems we've encountered and talked about a few options. Danny will be a permanent employee at the end of October, which will entitle us to new benefits. We decided that he would look into the insurance options at work and find out if they offer any ART riders with their policies.
If they do and the coverages would be an improvement to what we currently have, then we'll likely drop our COBRA and wait for the new insurance to start. I'm aware that Blue Cross might have some "requirements" as well, but I'm hopeful they'll look at my medical records and factor in all that we've done already. If not, at least we'll be working with a fresh set of funds and an RE's office who will actually monitor my coverage, not just my ovaries.
It was suggested that we consider ordering our meds now. Since we've already paid our COBRA payment for the month of September and won't really be using it for anything... she thought it might be worthwhile to at least use the prescription benefit, since the meds can be stashed in the fridge and saved for our cycle. We agreed and she said she'd make some calls.
I'm hopeful that December could be our IVF month... but at this point, I'm really hesitant to put any dates or expectations on anything anymore. I mean, just when I think we're moving in the right direction, we run smack into yet another road block. When I think about everything, I go from seething anger over the information I wasn't given and the choices we made based on the information we were given to such disappointment about where that has left us now.
If the new insurance doesn't offer any ART riders, then we're stuck keeping COBRA. We'll need to save up the 5 grand or so that the cycle is gonna cost us, all the while continuing to make the nearly $1000 monthly COBRA payments. As if the prospect of IVF weren't overwhelming enough... throw in all of this.
I haven't had it in me to get on any message boards... in a way, I kinda feel like almost everyone I had established any kind of bond with has moved on in one way or another and I just feel out of place. Everywhere I look, literally, I see bumps or full on bellies; every TV show finale is someone else being pregnant and it's a twist of the knife every time.
So yes... one prairie outpost you are how I feel, alone in a flatland 'tween the dream and the real; the irony, ask me "where have you been?" I don't know, I don't know... because I don't know where to begin.
Saturday, November 19, 2011
Falling into Fall...
Sometimes it's good to stop, look around and find the beauty in your "every day". It's hard as hell to do sometimes... especially when you're among the ranks of the IF. It's hard not to dwell on that giant elephant sitting in the middle of living room. And we're about to enter that lovely time of year when the elephant dons it's jingle bells!
The holiday season has become increasingly... sensitive. All of the commercials, the displays, the Photo with Santa line... constant reminders of what I'm not doing. I'm not seeing the magic of the season in the eyes of my child. I'm not standing in line for Baby's 1st picture with Santa or buying Baby's First Christmas onesies.
Instead, I'm watching everyone else pass by as if I'm behind a sheet of glass. I can see the smiles on their faces... the joy in their eyes. I can see them making memories and I wonder what their lives are like. What that feels like. I wonder if they are as happy as they seem... If I'll ever be allowed to be that happy.
Tuesday, July 19, 2011
One down...
My digestion has been... in a word... FANTASTIC!! No pain, no bloating, no diarrhea... I am ready to say, it has been my miracle! It has done for me what nothing else could. The tests, the pills, the diet changes, the digestive enzymes... None of it was able to do what Dr. Gong has been able to do for me in no time flat! It's amazing.
Now we wait to see if it helps with the baby stuff as well! :^)
Everything is looking very good on that front. My entire cycle has been a mass improvement from the last few months. Things had always been fairly regular for me since we'd started TTC, but things kinda went wonky around October/November of last year. I started having trouble getting good + OPK's, my temps were looking paltry and I was starting to ovulate really late. This cycle I had undeniable + OPK's, felt ovulation pains for the first time in MONTHS, ovulated on a normal cycle day...
The acupuncture is the most wonderful thing I've ever done. I recall reading about experiences of people who had undergone acupuncture and I couldn't wrap my head around how anyone could fall asleep with a bunch of needles in their skin. Now... I don't know how you couldn't. I love the fact that I basically have an appointment for an hour nap once a week!
I had also heard of people feeling "high" after a session. I hadn't experienced that until this past Friday. Based on where I am in my cycle, it was time for me to lay face down so that she could place needles in my back. This session was uber-relaxing! Usually, when my time is up the "stim" machine plays a little tune and that's what wakes me. I usually feel a touch groggy, but by the time I've gotten off the table and put my shoes on, I'm good.
This time, as I was walking down the hall... I literally felt myself listing to the left. It was like someone was leaning the hallway on me. I'd say that "high" feeling lasted for about 10 minutes or so... It was pretty wild. I'll be having the same treatment again tomorrow morning, so I'm curious to see if I have the same reaction or if it was simply because it was my first time having that type of session.
I know Dr. Gong told me TCM isn't magic... but I went to her with two problems less than 2 months ago. She's knocked one down... now there's only one to go.
Tuesday, June 21, 2011
What's old is new...
At the urging of a very good friend, I made a book purchase. The Infertility Cure by Randine Lewis. I finished the entire book in a matter of 2 days. Upon closing it, I decided finally, that I was going to make an appointment with the Traditional Chinese Medicine doctor just down the road. It was time I made this a priority.
Last Tuesday I met Dr. Xiaoyan Gong. She was Chief Dr. in Shanghai with almost 30 years of experience. I explained all of my digestive problems going all the way back to my gallbladder surgery in 1998. I handed her all 28 charts of temps that I had and we went over the fertility stuff.
She took my pulse and told me it was very weak. She explained that my problem was stomach/spleen. The stomach takes food in, the spleen distributes the energy from that food throughout the body. She stated that my stomach was taking food in, but with my spleen not moving it around, it just leaked through my body. This, she said, explains the diarrhea, malnutrition, poor appetite, lack of energy, etc. She also noted that my tongue had a thick white coating with scallops on the sides from my teeth.
I was then set up in a room for my very first acupuncture session. I'm a needle freak, but was totally calm and for good reason. I didn't feel a single thing! She set an electromagnetic therapy device over my mid-section and hooked various needles up to an electric pulse machine before leaving me to rest for a few minutes. After checking in less than 5 mins later to make sure everything was okay, I was left for the rest of my session.
I was given a week's worth of raw herbs to brew into a tea and take every day. She warned me that they would smell and taste bad, which I already knew from my reading. We went over the herb instruction sheet, I paid her and made an appointment for that Friday morning.
Friday morning I had a wonderfully relaxing hour long acupuncture session where I actually fell asleep. By the time I got home, I was buzzing with energy! I was in a wonderfully upbeat mood, I had a great appetite and both the smell and taste of my herbs had become less unpleasant. The herb instructions say that if you have the right herb formula, the taste and smell will become more appealing and the body can crave them.
We met up again this morning and I had tons to tell her! My appetite over the weekend was fantastic. My food stayed in my system until the following day, the diarrhea has stopped, all of my movements have become solid, no stomach pains, no bloating, no gurgling and my gums have stopped bleeding when I brush my teeth. These, she said, are all good first steps as my body has begun "retaining".
All I know is that I feel better than I've felt in years. What's old is new again!
Sunday, March 20, 2011
Smacked with a shamrock...
Friday, March 18, 2011
Wednesday, March 16, 2011
Another Month...
Wednesday, March 9, 2011
An Apple a Day...
Tuesday, February 8, 2011
It's a new dawn...
Monday, February 7, 2011
Through the Medical Looking Glass...
Friday, January 28, 2011
A new year with new ideas...
Tuesday, December 14, 2010
I Will Be Better...
I have longed and waited. I have cried and prayed. I have endured and planned over and over again. Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams. I will notice everything about my child. I will take time to watch my child sleep, explore and discover. I will marvel at this miracle every day for the rest of my life. I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to take another temperature, pop another pill, take another shot or cry tears of a broken dream. My dream will be crying for me.
I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain. I know disillusionment as my own body has betrayed me. I have been tried by fire and hell many never face, yet given time, I stood tall. I have prevailed. I have succeeded. I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs. I listen. And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.
And yes, I will be a wonderful mother.
Monday, November 22, 2010
Another failure...
Monday, November 15, 2010
Ring experience…
I'm 37 years old and have had paranormal experiences my entire life. I've never really been afraid because it's always been there and nothing has ever seemed intent on harming me. I acknowledge it's presence and it tends to be satisfied with that. Barring a few experiences at my old house in Harrisburg.
Now that we’ve just moved into the new apartment and D got all of our entertainment stuff hooked up to the internet, so I've been getting caught up on the last couple of seasons of Paranormal State via Netflix streaming while unpacking, doing laundry, etc.
Because I've been watching the show, D and I were discussing our own experiences over dinner a few nights ago. Since then, we've noticed the lights in the ceiling fan over our dining room table have begun to flicker on occasion. I checked to see if perhaps the bulbs were loose, but they were in tightly.
Saturday night we went to bed as usual... nothing out of the ordinary. Until I woke up in the middle of the night because I could feel that my wedding rings weren't on my fingers any more. I opened my eyes enough to see my engagement ring dangling on my ring finger, but my wedding band was completely missing. Upon waking fully and checking the bed, I found my band hidden under my pillow.
Okay, here's what makes this weird:
My rings are not easily removed. I have to wiggle the rings and stretch my finger just to get them off. So I'm hard pressed to believe that I wriggled out of them in my sleep. I've also been married and wearing these rings for almost a year now and they've never come off before.
Also, the order in which I wear my rings. I wear my band first with my engagement ring second. I'm at a loss as to how I could have removed my engagement ring to get to my band, left my band under my pillow and then put my engagement ring back onto the tip of my finger... all in my sleep.
I wondered if one of my rings possibly caught on the pillowcase while I was asleep. But if that's the case, then I would think that I should have woken with my band on instead as that's the ring I wear closest to my body, or both rings should've been under the pillow.
Things had been moderately quiet, barring the things at the house we just moved from… but people died there, so what do you expect? I found myself wondering if I was still sensitive.
Seems I may have gotten my answer.
Saturday, November 13, 2010
Test
This is a test. My husband setup Windows Live Writer for me and this is a test post to see if it works.
~N~