i have had a LOT on my mind lately. a lot. i don't even know if i have the time or energy to recap it all right now, but i'm sad i haven't been better about blogging, since lord knows poor noah's baby book is empty, save for a handful of the "easy" pages.
2010 has been a struggle. i didn't expect this to be such a challenging year. my goal for 2010 was to get pregnant with baby number two. you'd think after two years of infertility and two rounds of IVF i would have known it wasn't that easy. but i would have never guessed all the twists and turns the year would take and the emotional toll that the sadness of others would wear on me.
long story short, my arthritis has been flaring up since around february, and i have felt the worst these past few months as i have entire my entire adult life. i have struggled to take care of myself, let alone noah, and unforuntately, when i'm in pain, my temper surfaces and i am easily angered and frustrated.
i thought doing an IVF cycle in june was a good decision. in my mind, we would do it, it would work, and i would be pregnant and therefore, feel better. when i was pregnancy and nursing, i felt fantastic, and i thought - man, if i could just be pregnant... on the contrary, the IVF hormones made me feel worse, and the failed cycle pushed me to move on changing some things in my life.
i switched rheumatologists. same clinic, different doctor. i switched from a ho-hum, laid back, wait-and-see doctor, to a young, female, osteopathic doc who i hoped would embrace my concerns and tell me she had so many ideas to help me feel better. let's just say, she didn't embrace me. don't get me wrong. she has responsive to my concerns, and i feel like just making the change is a psychological fix, if only for the short term. she put my on some meds - namely prednisone, a steroid, which is meant to be a quick fix in the short term. it is helping a lot, but i no it won't last because i can't stay on it indefiniely. we talked about possible other drug options, but she didn't want to try anything if i am considering getting pregnant anytime soon. she said she would want the drugs she had in mind to be out of my system for six months - my eff-ing clock is ticking lady! i don't have six months! i may run out of eggs and options in six months! *deep breathe* she ran some tests, and determined that i was significantly anemia - moreso than usual. i did follow up bloodwork which confirmed that it is an iron-deficiency anemia, and she referred me to my primary.
now i don't have a primary... i'm always just used my rheumy as a primary, and gone to the clinic to see whomever when i've had a cold. so i went to my mom's primary. mom highly recommended her, and i thought, if i can just find someone who will hear my concerns, and tell me it is something more, and they know what will help. nope. she referred me to a GI doctor, put me on iron supplements, and something to protect my stomach from the meds the rheum put me on. she said the anemia could be caused by internal bleeding, a possible side-effect of a med i'd previously been on, and the GI may want to do an endoscopy.
now let's back up a minute. on top of physically feeling like shit since february, having been on an emotional rollercoaster with stacy's loss of her twins, other friend's and acquaintances losing their babies, and my own BFN from my IVF cycle, we had our open enrollment meeting at work in mid-july, where i found out that my premium is going from $500/mo (blue cross PPO for the entire fam) to $740/mo, and my specialist co-pays are going from $20 to $40, which is fucking fantastic since practically every doctor noah and i see are specialists..... seriously? they offered a secondary PPO option, that was $600/mo but has fewer in-network providers, one of which is missing is noah's pediatric group. EHHHHHH! big no. not switching. not when i ***LOVE*** the pediatrician. ***LOVING*** a doctor is a huge deal to me, and i am not willing to switch.
anyways, so i saw the rheum, i saw the primary, i have an appt with the hemotologist, which i may cancel because i'm so FUCKING busy this month, and the doctors have assured me my anemia is of the iron-deficiency sort, not the hereditary spherocytosis, you-need-a-transfusion-and-your-spleen's-about-to-burst kind.
i also saw the reproductive immunologist, dr. coulam. she is one of the best known RIs in the world, and totally acknowleges the (obvious to me) correlation between auto-immune diseases and infertility. i went to her basically knowing that given my medical and fertility history, she would want to run a battery of tests, bloodwork that i was 100% prepared to do that day. however...
the lab they use does not work with insurance, the doctor and nurse tell me. insurance might pay a portion of it, but you have to contact them to find out, submit the claim, and so forth, they say. oh and the testing costs $1350, plus $50 shipping and handling, and you have to pay up-front, cash, check, or credit TODAY.
wait, what?
i can't ask that many questions, i suppose. RIs are NOT a dime a dozen, and i'm on my last leg if i want another baby. but shit! $1400 up-front that insurance MAY cover a PERCENTAGE of??? yikes.
i haven't done the bloodwork yet, though i know ultimately i probably will, and should do it soon. i called the insurance company today, and they told me what info they'd need to have to tell me whether or not they would pay the claim. i am waiting to hear back from the billing department at the RIs clinic.
so that said, i am finally feeling better this week, thanks to the prednisone. for the first time in months, i can make fists with both hands. i don't cry because of the pain when i get out of bed in the morning. but my mind still races with the thoughts of what to do next. i do not know what my next move should be, and the primary made a comment that i can't get out of my mind.
she said it's hard to live with arthritis, and it's hard to care for a small child, but both of those things together are very hard. she said do you work? yes. full time? yes. if possible, you might think about going down to part time. (choking back tears) okay.
i say okay, but i really mean, well my job can be stressful, but it's very different from most jobs. i can come and go as i please, and i don't necessarily always work 40 hours.
but still. she's probably right. am i burning the candle at both ends? am i wearing myself down to the point that i'm causing more harm?
i worry constantly about getting old, not because i'm worried about wrinkles or saggy boobs, but because i'm afraid of what arthritis will do to me. i have had this disease for 30 years, and i am only 31 years old. most people who've had arthritis for 30 years have a foot in the grave. i want to live at least another 30 years, but i don't think longer is asking too much. but what kind of life will it be when i'm 61 and have had arthritis for 60 years? if this is the state of my body now, i'm terrified, T.E.R.R.I.F.I.E.D. of what it will be like when i'm older.
it's something above and beyond what most people can begin to comprehend, which is why, with what feels like the entire freaking deck stacked again me right now, i am contemplating a nervous breakdown.
but not until after i get back from vacation. :)
1 comment:
I'm so sorry to hear all this. You are in my thoughts and prayers!
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