Sunday, October 25, 2015

10/25/15: I Have to Cut Out Sugar?!

I know there's only so much I can write about struggling with my health before people get bored and stop reading, so hopefully this will be the last post for a little while about it, but I think since I was feeling pretty good last year I didn't really feel like I needed the outlet this blog provided for me.  Now that I'm in a lot of pain again, I've turned to writing for therapeutic reasons.  So here I am, to talk about the constant struggle that is life with chronic pain again.  Except this time there's a little more hope in my words because for the first time in months, I feel like we've made another huge breakthrough!

I've been really struggling the last 3 weeks with what I now term "fibro pain" because it just feels like I have the flu, except I don't have the flu.  I've had some good days in there, which is entirely crazy-making because it makes me question whether any of this is real, but I usually wayy overdo it on those "good days" and wind up in bed recovering the next day and then I feel sad, but at least reassured that I'm not crazy.  So, I know everyone thinks that their doctor is the best doctor, but really, my doctor is the BEST DOCTOR.  It took me a few years of searching to find him, but from the first appt. I knew that he was phenomenal.  He's been the one managing all of this for me for the last 2.5 years and he's the most invested, caring, systemic-thinking, doctor I've ever had.  I seriously don't want to leave Utah until this is all resolved because I doubt I'll ever find anyone better.  So he's the one who casually mentioned fibromyalgia last time, but then he called me a week later and told me that he'd been thinking about my case all week and really felt like I should go to this functional medicine guy in Spanish Fork because he specializes in looking at the root of the problem (that's what functional medicine is, basically), and he would look at my diet and exercise, my hormones, etc--just a wholistic perspective on the issue.  The problem was that his next opening for new patients wasn't until February (4 months?!).  But my doctor had his own personal appt. with the functional medicine guy the following week and wasn't going to be able to keep it so he offered me his time slot.  He had already called the other doctor and asked if that would be alright and the other guy said yes.  I, of course, said yes because anytime I can skip 4 months of a waitlist I'm not going to pass that up and I had an appt. with the new doctor for 1.5 weeks later!!

The appt. was on Friday of this week (2 days ago) and it was amazing.  The doctor spent 2 solid hours with me--no other patients in between--just listening to my history as well as explaining his philosophy about how all of this started and why it's progressing the way it is.  I told him I was going to have a tough time feeling hope that this would get better and he told me he was 100% confident that if I followed the plan he could cure me.  I laughed out loud at that, but he was serious.   He said he's never seen a patient he couldn't cure as long as they did their part.  That's a pretty big claim when we're working with something like endometriosis or fibromyalgia.  But I went home and basically haven't stopped researching his explanations all weekend and I'm more and more convinced that he might be right about all of this.  

His basic philosophy is that there is a genetic disposition to auto-immune disorders (lupus, rheumatoid arthritis, Hashimoto's, etc.), and then there are emotional or physical triggers that send our body into overdrive, and then with those two things our GI Tract goes into an inflammatory response for so long that it's starts to tear and we develop what's called "Leaky Gut Syndrome".  He is of the opinion that my initial trigger was probably a few years back when I was on antibiotics forever for chronic sinus infections and my body started getting chronic yeast infections (my parents and I have always thought there was a connection here).  It turns out that yeast is a really common underlying cause of every symptom I've ever experienced--even endometriosis--because my body has learned that it needs to be constantly fighting this infection, and it has caused widespread inflammation nonstop for years on end.  What happens is that eventually with the inflammation lasting so long, you start to develop one of the specific autoimmune disorders (if you have the predisposition) and until you can restore your GI tract health and get the inflammation down, you can't restore balance to your system and you will stay in pain.  Since fibromyalgia is not one of the specific Autoimmune Disorders, the doctor ran a bunch of tests to see which one we think I have, so we can at least have a starting point, and then he also started me on a bunch of supplements to start repairing the tears he thinks I have in my GI Tract and to stop feeding the yeast in my system.  Unfortunately, this also means I basically need to stop eating any and all sugar, since that's what yeast lives on, and I need to be eating lots of protein to keep my blood sugar stable.  

This was all preliminary hypotheses, and he'll call me on Monday with the results from the bloodwork and lab tests we did to look at more specifically what foods I'm having reactions to.  From there we'll craft a very specific food and supplement plan to start the restoration process.  

He was really hopeful (and I actually am too, at this point) that this is totally curable and I just have to be consistent about it.  But as I've done more research, I've found that for a lot of people, the restoration process can be worse than the original autoimmune disorder symptoms because as you kill off the yeast (or whatever bacteria) that's overrunning your system, it releases toxins, and your immune system is already so compromised, it has a hard time clearing out those toxins, which leads to more inflammation and pain.  In the long run, though, it seems to be a real solution to all of this (assuming yeast or some other infection is really the root cause of all of this) and I'm willing to try it.  

I was telling Dave yesterday that it feels really weird to be living this double life of sorts where I go to school and see clients and pretend everything is normal, but then at home can barely lift my arms and need help with something as simple as plugging in my laptop.  And it's weird to try to focus on stats homework, when I really just want to keep reading anything and everything about functional medicine and how cortisol and insulin interact with each other in the face of widespread infection and how that relates to lupus, and how that relates to endometriosis, and on and on and on...It feels like I'm trying to balance these two warring parts of myself that are trying to live in harmony, but the stronger one gets, the more it takes from the other.  I'm praying and hoping that this might be a solution for all of this, but scared as all get out that I'm just setting myself up for another huge disappointment.  Prayers would be appreciated right now!  And thank you to everyone in my life who has been so understanding of my recent flakiness and need to set boundaries for myself to keep my energy levels manageable.  Having loving support and understanding right now has been so meaningful and helpful through all of this.  As always, thanks for reading!  And wish me luck! (especially cutting sugar out...eek!)

Also, here's some of our life lately :) (Sorry, I'll work on taking more pics, and better pics)
Josh and Tiffany (Dave's brother and his new wife!) stayed
 with us last weekend and it was fun to get to know them a little better!

Stake conference with Emma!  We're in a bishopric in her stake and
 so we got to hear her beautiful musical number at the stake
conference where they called a new stake presidency for us!
She did great :)

One of those days I did WAY too much when I felt good.  But it was fun!

Monday, October 5, 2015

10/5/15: Finding Self-Compassion

Lately it's felt like my life is just one big loop that keeps repeating itself.  I can vividly remember a visit to my physical therapist 2 years ago after the first week of my master's program where I was on the verge of tears telling her that I didn't think I could do this.  I couldn't sit in the chairs in class for more than 20 minutes without being in severe pain and it was so distracting that I could barely take anything in.  She gave me a tens unit--a portable stim machine--and it was a lifesaver for those first few months of grad school before we found some medications that helped minimize the pain.  

Since then, we've tried about a hundred different combinations of medications, procedures, surgeries, physical exercises, mental health support, emotional work, etc., and we've seriously diminished my pain to the point where I was almost pain free for most of last year.  Unfortunately, when I started the PhD program, my pain came back with a vengeance.  It's been ramping up all summer, but it got so bad the last two weeks that I decided I needed to go back to my doctor for help.  We're not exactly sure what's going on, except that we know endometriosis spreads when you're not on hormonal suppression, and I've been off for a year now, so there's a good chance there's more endometriosis triggering the pelvic pain.  Unfortunately, it feels different this time.  I've been having serious fatigue and all-over body-aches, which are tell-tale signs of fibromyalgia.  Now, all of the conditions I've been diagnosed with so far (and there are a bunch) are in the same family as fibromyalgia--they're functional somatic pain syndromes--so when I asked my doctor about it he casually said something to the effect of, "Of course you have fibromyalgia--at least you're on the spectrum--but whether or not that's an official diagnosis won't change the way we treat it, because we're already treating you the way we would treat someone with it."  

This was quite a bombshell for him to so casually drop on me.  I think he saw the shock on my face (he's a pretty observant and emotionally in-tune doctor) because he quickly reassured me that even though this might be something I struggle with my whole life, there will be good times with the bad times, and there are things we can do to manage it, etc.  This didn't make me feel any better, though, because I just heard, "You're going to struggle with this your whole life."  That's really different from, "You shouldn't be in this much pain, and we're going to find out why and fix it." which is what I normally hear from him.  

Needless to say, it's been a rough week over here.  He talked pretty frankly with me about making sure I only keep good stress in my life, and cut out the bad.  I've had to seriously consider my schedule and if a PhD is plausible with how much pain I'm in.  It's the most frustrating thing to be limited physically when mentally I have SO much I want to accomplish!

I'm just taking life one day at a time for now, and we bought another tens-unit to help me get through classes and homework, which is helping just a bit.  But mostly I'm working on not feeling guilty or bad for not being able to make it to all of my classes, or do all my homework, or research as much as I should.  I'm working on allowing myself to have self-compassion and sleep when I need to sleep, and work when I have the energy to work.  

Something Elder Bednar said in General Conference (the LDS Church leaders speak to us 2 weekends a year in this conference) really spoke peace to my soul yesterday--"When you cannot do, what you have always done, then you only do what matters most...Physical restrictions can expand vision.  Limited stamina can clarify priorities.  Inability to do many things can direct focus to a few things of greatest importance."  I know that I've seen this happen in my life.  I've seen SO much good come from my physical pain and limitations, it's just hard to remember it in the moments that I can't get out of bed for class, or pain is keeping me up all night, or I'm struggling to stay with clients mentally and emotionally because I'm distracted by my aches.  

Sorry for a tough post today, but this has all been dominating my thoughts for the past two weeks, and while we've also had some great days and fun with friends and family lately, I feel like this is what my life is really about right now--finding the balance.  
At Chalk the Block with my niece and nephew!

Also, as per request, Pepper found a jungle gym and I thought I'd share :) Enjoy!