Friday, February 25, 2011

decisions, decisions, decisions

I thought I'd write up a little update on everything that's been going on with my health recently.  There have been many doctors appointments, tests, tears, prayers, sleepless nights, and days full of confusion, frustration, and gratitude.  I am sure there are still more to come.

I did a phone consultation with a doctor in Illinois who specializes in thyroid disorders and diseases.  She cured her own Graves' disease and had a lot of insight and advice for me. She was very caring and seemed very passionate about her field of work and helping others get better without having to resort to the options I have been offered so far: drugs, radioactive iodine, and surgery.  She seemed to feel like this was triggered and worsened by stress, which sat well with me because I am a big believer in the mind/body connection, and around here there has been far too much stress for far too long.  She also had a lot of insights into nutrition, which I am also passionate about, so it was right up my alley.  I asked the doctor today to order a few extra tests she recommended, and he complied with all but one.  I was told to cut gluten out of my diet, minimize dairy and starches, and to eat lightly steamed, broiled, or sauteed foods for now and begin reincorporating raw foods into my diet starting in about 4 weeks.  She said I should go gradually back to how I normally eat in the course of 8 weeks or so.  She also said that there was a good chance my allergies could improve too, which would be absolutely fabulous since that is a bog part of why this has been so debilitating for me right now.  There is more talking to do, tests to run, and decisions to weigh out.  It sounds like a long, expensive (since I am sure insurance won't cover this) process and although it really appeals to me, I am concerned about the cost and the effect my taking this gentler, more gradual route will have on our family.  I want there to be room, but I am not sure if there is.  All I know is that this doctor was extremely insightful and caring....I felt she was looking at me and my situation as an individual rather than a textbook case.  She actually alerted me to another thyroid issue I have going on, which was confirmed by the new endocrinologist I saw today.

This morning, Wes and I dropped the kids off at my mom's (thanks SO much, Mom) and headed to a new endocrinologist.  The previous doctor we had did not feel right to either of us, and she didn't really want to hear or answer any of our questions, and she definitely didn't like us challenging her treatment protocol of an anti-thyroid medication.  We decided to get a second opinion, and an ultrasound (which to our surprise looked completely normal), and I am SO glad we did.  This doc was a little eccentric (he quacked "hello" when he came through the door, among other things), but it didn't bother me because he was clearly enjoying what he was doing, willing to answer any and all questions thoroughly, and helped us weigh our options for me individually, which really made me happy.  He also confirmed what the doc yesterday said, and that's that I have two autoimmune thyroid diseases, Hashimoto's and Graves' disease.  Apparently, it's rare, but it can happen.  It's probably part of why it went undetected for so long.  I had symptoms of both hypo and hyperthyroid, so my symptoms didn't completely match up to either disease, and possibly the other developed over time since I wasn't being treated properly.  He also said I definitely have the beginning stages of thyroid eye disease.  It helped knowing that while discussing treatment options, and now I know I have to go back to the opthamologist (another appointment, sigh) to get that under control.  I am hopeful that it will disappear as I begin whatever treatment I choose.  I also feel now like I need to get back in touch with the Illinois doctor to see what her recommendation would be.  Right now I think Wes and I are both leaning towards removing my thyroid and then following the natural treatment protocol, but we will see.  There is one more person I want to see and more information to gather before we make a decision.  My heart rate was back to normal, my blood pressure was great, so aside from the stress and anxiety of it all, I've got some time to decide what to do.  We made an appointment for next month at which point we will begin the process of treatment, whatever that may be. 

In the meantime, more tests were ordered along with a sleep study.  Apparently, if you have an autoimmune disease, you run the risk of developing another, so I was tested today for a slew of other things just to be on the safe side.  If I did have something else and they caught it early enough, it may not turn into anything as serious as this has been.  My fingers are crossed that most labs come back normal.

Yes, I said most.  I asked to have my vitamin D levels tested, because Illinois doctor said that there is a HUGE correlation between vitamin D deficiency and autoimmune diseases.  I am hoping it's off, because maybe that would mean it could improve with just some good ol' sunlight (further proof that I really need to live somewhere warmer  and sunnier than here, at least in the wintertime).  We'll see what happens.

I won't go into too many details, because unless you are me, it's probably very boring.  We are feeling hopeful that the Lord is leading us to the right people that can help me, and that we will be inspired and guided as far as what to do.  I know Heavenly Father knows me and my body, and that he will help me get through this and figure this darn thing out. 

In the meantime, I feel grateful for all the love and support I have received from my family.  Especially my parents and siblings.  They have really rallied around me and done everything they can and more to help me.  I have spent many days and evenings wearing out my welcome with my three darling but rambunctious bundles of joy and they have been so understanding and patient and accommodating.  It's been a bigger help than almost anything else.  Not to mention my mom's willingness to babysit - without me even having to ask - for every doctor's appointment we've had.  That's no small feat.  It's exhausting and I know on those days nothing else is getting done, and she's very worn out and probably very relieved when our car is pulling away, but I hope she knows how much this has meant to me.  To be able to focus completely on what people are telling me instead of the constant interruptions and demands of three little boys.  Thanks, Mom.  You are amazing!

Making decisions like this are tough and scary and all-consuming.  I feel SO burned out and at times, very discouraged.  But I was advised when I was young to "flee from discouragement" and I am trying my best to follow that advice.  Finding hope can be really hard, but it's always worth looking for.

The hardest part is trying to deal with "real life" in the midst of it all.  There is still family drama, obligations, upcoming birthdays and baby showers and callings and just life.  Wes and I have decided to put the cruise on hold until my health is under control and for now, steal away a few weekends to rest, talk, recharge, and stay connected and strong throughout this process.  I think a family vacation at some point will be good also.  But for now, we need to get away so we can face these challenges head on and be in a place where we can discuss, deliberate, and decide what the game plan is going to be and how we are going to make it work in our lives.  Hopefully soon. 

All the mumbo jumbo aside, I truly am grateful for this experience and what it's teaching me. (more about that later)  I am so grateful for the prayers and support I have received.  I have heard people say before that you find out who your real friends and family are when you go through trials and it's so true.  I am grateful for those who have really been there in one way or another and have felt your prayers and love from far away.  They have been much needed and have brought so much peace and comfort.  Thank you from the bottom of my heart.


Hall5 said...

I am so happy that the doctors are finding answers for you. I am amazed at all of the patience you have through it all. I will keep you in my prayers.

Megan said...

Thanks Michelle. It's truly a blessing to find good doctors. Can't wait to see you!


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