the team. the plan.

bc66843f88de7e921d7b2e1748aa716ba23205bcwith beckham’s first birthday in sight, i needed to create a plan for ‘after nursing‘. if it were up to my doctors, they would have preferred i quit nursing & start on my meds at 3 months (if not before). however they do support & respect my decision. a couple times this year i reached my max, the pain was more than i could bare. i threw up my hands and said i’m done. but both times God was so faithful, the next day He filled me with just enough strength & perseverance to do one more day. and here we are a week from beckham’s first birthday & as i think about just how much God has absolutely carried me through this last year- three years- six years since i have been without meds, my eyes well-up with tears and my heart is full of gratitude. i do not regret a day, baby #1 & #2 were 100% worth all of it. with that said i cannot tell you just how ready i am to find relief. i now have peace that i have given my best effort to help my body naturally, between diet, exercise, etc… and now i am at the place where i am so very thankful that i have access to medicine that can help.

imagesmy first step was setting up an appointment with my primary doc. she focuses exclusively on women’s health & specializes in internal medicine. she is an absolute GEM. i call her my ‘puppet-master’, she oversee’s all my specialists, because they are just that, specialists and sometimes they do not account for the whole picture. i lucked out in getting connected with her almost ten years ago. she no longer takes new patients but focuses whole-heartily on her current patients, and that she does. she is one of the most thorough doctors i have ever met. and the thing that baffles me to this day is that she really really cares. she cares so much i will get follow-up calls at 9pm. she finds my pain unacceptable and has made it her personal mission to find me relief. not to mention she is a genius and just stellar at what she does. i seriously could go on & on, but you get it, a GEM, we will call her H.

in november i had my first appointment with H (remember i am a planner, so i wanted to make sure i met with all my docs and we had a ‘plan’ in place for after beckham’s first birthday). we obviously talked about many issues but i will give you the highlights. first up, my period arrived when b was 6 months old. each cycle worse than the next, so between needing to get my endometriosis under control & find a very reliable contraceptive due to the risk of birth defects that my RA meds can cause she suggested a follow up with my obgyn to discuss an IUD. she also felt with the hormones & painful monthly cycles at bay it would be easier to address the RA & Fibro. so on the agenda:: appointment with obgyn, RA doc, a dexa scan to evaluate my osteopenia, blood tests, and surgery on a cyst in my thumb and report back for a plan. whew… exhausting right, well to be honest the worse was the inevitable convo about future babies. still such a sensitive subject for me. i will post more on that soon.

so off i go…

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RA appointment. he is also a very thorough doctor and takes my care very seriously. a year ago he actually moved to his own private practice in order to set his own pace with his clients. he values quality over quantity. this has always impressed me. he seriously takes all the time i need, making sure i have all my questions answered, and best of all he values my opinion and choices and encourages personal ownership over my health and trajectory, we will call him E. and true to form he lays out all my options and allows me to come to a final decision. we decided to start Cymbalta first, i used this drug pre-babies for a short time and found relief from the fibromyalgia. it is however not safe in pregnancy (or trying) or nursing, so it has been a while. then a month later i plan to start a DMard (disease modifying antirheumatic drug: used in RA to slow the progression of the disease). i have tried hydroxychloroquine in the past without much relief and not wanting to jump to methotrexate at this stage in the game or any infusion type drug, i plan to give sulfasalazine a try.

dexa scan. it has been several years since i have been scanned, so both E & H felt it was time. it is seriously so quick & painless… they scan your back & hips… takes like 30 minutes in the door & out. I was diagnosed with osteopenia (BMD, bone mineral density, is lower than peak BMD but not low enough to be classified as osteoporosis) when i was 19. E called one evening (apologizing for the late call… i was just blown away he didn’t want to leave the results on my answering machine or head home without getting me the results). my back was about the same but my left hip has increased bone loss, even still he recommended not going on any meds at this time. the osteo meds only deliver benefits for five years, so at my age the risk does not outweigh the benefit. they also feel with my celiac diagnosis & GF diet my absorption of nutrients will improve & hopefully slowing the loss of bone in the years to come.

Working-togetherobgyn. she is my gift. when i was diagnosed with endometriosis & had my first laparoscopy i had a doc i really liked. he had the hard job of telling my husband (at the time boyfriend) we may not be able to have children of our own, and if that was in the plan, sooner than later would be best. he walked through that year of trying to conceive baby #1 with us, he celebrated and prayed with us in the ultrasound room when we saw the miracle God had given us. he loved the lord, and out of all my docs it has always been most important that my obgyn aka baby-catcher love the lord. so while that moment was joyous, i also found myself very anxious because he no longer delivered babies. but because he knew my wishes and how hard this was on my heart he personally asked another doc in his practice that was not taking new patients to take me. and she said yes! i am very comfortable with her, she is an opinionated feisty lil thing, patient, kind & to the point, a mom of three & even goes to our church, & best of all loves the lord. she is truly a gift, a match made in heaven. and while this lady has been through two difficult pregnancies and all the in-between, she has actually never ‘caught’ one of my babies (funny stories::: #1 & #2). but never the less, she has been there for me during the hardest of hards, and five years later i am fortunate enough to call her friend. MY GIFT, lets call her G. and in chatting with her, G agrees with H that an IUD would be the best option. so we set an appointment for the ‘install’ and well it has been a crazy crazy process, but that deserves its own post.

surgery. seriously this was just more annoying to deal with than anything. i had a ganglion cyst at the base of my thumb. mostly ‘hurt’ (relative to my other pains it was more of an irritant) when i exercised, rocked the baby to sleep, chopped veggies and well– texted. those happen to be a decent part of my daily duties so it needed to go. but because of my crazy response to the IUD I actually had to reschedule the surgery for the following week. i was in and out in 3 hours. i had a small cast to immobilize my thumb for two weeks. it really wasn’t bad. made cooking, changing diapers and picking up the baby a bit more difficult. but it was just another thing i could check off as complete.

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the final plan. i returned to my primary, H. with a full report. she reviewed blood tests & all the specialist input. she agreed with the RA medicine recommendations. she also agreed to forgo any medicine at this time for the osteopenia (but plans to rescan in two years). she was very proud & thankful i stuck it out with the IUD, she still feels it is the best choice for me. she did say it was a very unusual response but wasn’t surprised my body reacted the way it did. as far as my celiacs disease she didn’t feel it was necessary to visit the gastrologist at this time, as i have maintained my gluten-free diet. my blood tests were mostly on the up & up. except my vit D levels. this has been an on-going challenge, even with supplements. vit D can effect so much so she placed me on 5000 IU’s a week.

all and all it is a good plan. one i am truly looking forward to. i am hoping for major relief in the coming months. however, i would be lying if i said it was all great. my heart is breaking a little bit over how fast this year went by and that my (mostly likely last) baby will be one next week. I adore that guy, he has my heart in his hand & i would move mountains for him. and he may get older but he will always be my baby boy.

if you are struggling with some major health issues of your own, be diligent and fight for a great team of doctors that work well together and invites you to be a vital piece of that team. your voice has value, you are the one who ultimately carries out your care plan & you want to be comfortable. most of the time we do not have control over getting certain diseases but for the most part we do have options & control over how to manage.

teamwork

3 thoughts on “the team. the plan.

  1. Thanks for the blog post! I like the plan too and hope it gives you the relief you need and deserve. It’s nice to read all this information in one place – seems like our conversations always get cut short these days by those amazing grandchildren (of course I wouldn’t have it any other way – their interruptions are true blessings!!) Thanks for your transparency and honesty…..

  2. Pingback: it’s back… | rheuminate

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