thoughts

I've been meaning (quite sincerely!) to post more often, but am usually deterred by two things: either my fingers and wrists hurt too severely and are too stiff to type much, or else I'm feeling self conscious over repeatedly posting about how bad I feel.

Today I am hindered by both of the above. But alas, I really should try to at least post something a bit more often...

I am still struggling with pain and fatigue. A great deal.

It's incredibly discouraging to see so little improvement or relief. Especially after spending a large amount of hard earned dollars to see several physicians, have extensive testing done, and buy vitamins, medications, and supplements. All the while sticking with an incredibly restrictive diet for months and months. I am continuing to diligently stick with the diet, supplements, medications, and other instructions from my doctors. We are trying to remain hopeful and patient and keep pressing on as best we can, but it is disheartening to see such little change or improvement.

In all honesty, we are both very discouraged. Just when I experience a glimmer of improvement and we begin to get excited about it, I am knocked back down by something else. The past few days have been immensely painful for me, reducing me to a state of writhing around, crying out like a wounded animal. I am desperate, wishing there was a way to escape my body to get away from the relentless pain.

I hate to complain or sound like a downer, but I am TIRED of trying to tough it out and put on a "I'm okay, I'm hanging in there" face. I am not okay. 
 
Despite this rather depressing description of what things are like for us, Spencer and I are learning and growing during this painful time, being refined by our loving and merciful Maker. We are repeatedly humbled and amazed at how God gives us the strength and grace to get through each day - this has been such a painful time for us, but He has proven Himself faithful, trustworthy, and kind, blessing us with exactly what we need to endure the trial. That's not to say that there aren't days that we grumble and cry, shaking our fists and wondering "why us?" We struggle a lot with discouragement and frustration, so please do pray for us.

Our Lord is sovereign, and we trust that He is doing this for our good, and better yet, for His glory. We take comfort in realizing that He is using this suffering to draw us near to one another and ultimately, nearer to Him. Our marriage has been a storm-tossed one thus far, but we continue to fall further in love with one another as we weather these trials together. We are far from what we ought to be, and I am ashamed to say I have not endured this trial with the grace, trust, or patience that God so desires. Despite our hopeless number of flaws and failings, He has never forsaken us and is with us through it all, guiding, protecting, sustaining, and refining. To Him be the glory.

The LORD will guide you always;
he will satisfy your needs in a sun-scorched land
and will strengthen your frame.
You will be like a well-watered garden,
like a spring whose waters never fail. - Isaiah 58:11

Do you not know?
Have you not heard?
The LORD is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.

29 He gives strength to the weary
and increases the power of the weak.

30 Even youths grow tired and weary,
and young men stumble and fall;

31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint. - Isaiah 40:28-31


a beautiful day from back in November

butternut squash

I'm eating some. Topped with coconut oil, cinnamon, and a bit of agave syrup. It's yummy :)

I've been meaning to post sooner, but well, I've been feeling truly awful and really haven't felt like there's much new to say...

Here's some of the highlights from the past 2 weeks:

- I said goodbye to my dear, sweet family who graciously allowed me to stay with them for 4 weeks. I miss them and am so thankful for the support and compassion they have shown to Spencer and me.

- I flew back home to my beloved! It is SO good to be back home with Spencer :) We are both ridiculously giddy to be under the same roof again. What a blessing.

- Spencer is faithfully plugging away at school and work. It has been a very full, stretching semester for him, but he is doing well in his classes and is really enjoying the content. We are looking at his potential schedule of classes for spring and praying that he will be able to get the classes that he needs at the right time.

- I had a good day last Sunday - I had enough energy to make dinner, take a shower, AND do dishes. It's literally been months since I've had the strength/energy to do all 3 in one day. Seriously. It was so nice to feel productive and useful.

- The rest of the past 2 weeks I've felt absolutely terrible. The same way I've been feeling for months and months, so no big change so far in my overall health status. I'm trying to remain hopeful though! I've spent this week either confined to bed due to the severity of the pain, weakness, and dizziness, or else curled up on the bathroom floor debating whether or not throwing up might help somehow.

- My husband is wonderful. He's such an encouragement to me and I respect and admire him so much. He just keeps pressing on and is joyfully and patiently accepting our painful circumstances, lovingly serving and nurturing his sick (and often ridiculously emotional) wife, reminding her that God WILL take care of us. Not that this is "news," but I just wanted to share how thankful I am for this man :)

- My biodfeedback contraption is currently making its way to our home via a fedex truck... stay tuned!

- I never thought I'd say this sort of thing, but I ♥ my prescription pain medication. It doesn't take the pain away, but it takes the edge off and allows me to sleep a little better, which is a huge blessing.

- I'm feeling discouraged about the diet I've been on for the past month. I've been avoiding gluten, soy, and egg for months and months because they definitely make me feel worse - I intend to continue avoiding these items indefinitely. I have additionally eliminated potato, tomato, peppers, eggplant, citrus, sugar, and limited dairy and legumes, per my doctor's suggestion. I've noticed little to no change in my symptoms. Of all these foods...I REALLY miss tomato the most. In a couple of weeks I have an appointment by phone with my doctor, so I definitely want to hold out at least until then to see what he thinks.

- I'm faithfully taking the vitamins and supplements recommended to me. So far not noticing much change, but these things do take time, so I'm trying to remain patient and diligent.

- My dear, sweet sister-in-law Heather (Spencer's brother Matt's wife) was actually diagnosed yesterday with fibromyalgia herself! She has been struggling a great deal with her health for quite some time now. We've been commiserating over and comparing our similar symptoms (debilitating fatigue, severe pain, sleep issues) for the past couple of years, but it is still rather funny (and quite sad!) that we both actually have fibromyalgia. Please, when you pray for me and my health struggles, remember to pray for her too.

Well, that's all for now. Thank you so much for your continued prayers. Overall we are hanging in there, but there are days we are discouraged and frustrated, feeling like there is no relief in sight, both for me as the sick person, and for Spencer as the caregiver.

I've been dwelling a lot on 2 Corinthians 4:16-18...
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this LIGHT MOMENTARY affliction is preparing for us an ETERNAL WEIGHT of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

update

I'm not sure how to keep this simple, so bear with my ramblings... here's what happened at my two doctor appointments yesterday:

Lupus and rheumatoid arthritis were ruled out - yay!
I have MAJOR problems with my autonomic nervous system - boo!

Okay... so here's a little bit of physiology regarding my problems:
The autonomic nervous system consists of 2 parts:
- parasympathetic nervous system (PNS) - "rest and digest"
- sympathetic nervous system (SNS) - "fight or flight"

During sleep, the PNS is activated and it helps to restore or "recharge" your body by maintaining basic, yet essential functions:
digestion and absorption of nutrients, restoration of the immune system, support of the production and release of hormones, you know, all the "rest and digest" functions that are essential to keeping your body going each day.

Well, my body pretty much completely FAILS to activate the PNS at all during the night. A normal person should experience a 1763% increase in PNS activity during sleep. My test results revealed that I had a 87% increase. Ha!

No wonder I've hardly had any energy and have felt terrible the majority of the time for the past 7 years. My poor body hardly gets a chance to "recharge" each night. I'm missing out on the majority of restorative sleep night after night, which means I have little chance build up and replenish energy reserves.. For years I've felt like I'm surviving off of little emergency bursts of adrenaline, and well, it's true - I have no reserves, so I'm pretty much solely depending on help from my SNS 24/7. It makes me think of a little hamster frantically running in its wheel all the time without every getting a break :)

So, to sum things up, basically there is a major imbalance going on in my autonomic nervous system, which is a common problem associated with fibromyalgia. An overactive sympathetic nervous system, and an under-active parasympathetic nervous system. This can be a huge contribution to the severe fatigue and pain and numerous other difficult symptoms that fibromyalgia patients suffer from.

It's not known exactly what causes this imbalance in the autonomic nervous system, as the root cause(s) of fibromyalgia is unknown, but now that we have found something that is clearly "broken," we can at least work to manage it and thus lessen the frequency and severity of future flare ups. Praise God for some answers!

Management will include:
- using biofeedback to train my nervous system to function properly (lots of times doctors just prescribe drugs to help with sleep issues and pain, so I am thankful that my rheumatologist wants to try this approach first)
- pain medication for those days that are especially bad and I need to be functional
- various vitamins, herbs, amino acids, and other supplements to support my nervous system
- supplements to help boost my adrenal function

I'll continue to deal with my food/environmental allergies and chemical sensitivities as well, as they are other likely factors that aggravate and trigger my flare ups. So, I'll continue to go without egg, gluten, and soy (and a few other random foods). It's a bummer, but my doctors agree that it's a good thing to do for now.

I'm very pleased and thankful with how well my 2 doctors have worked together in such a complementary fashion and how they both want to keep me off of drugs as much as possible. I have an appt on Monday to talk more about the biofeedback thing with the rheumatologist and THEN, I fly home to my beloved that night (yay!!!!).

Well, I am exhausted, so that will have to be all for now. It still blows my mind that it has taken 7 years to figure out that this is going on. Crazy. I am overwhelmed by everything I have learned and have much to research, but immensely thankful that we've gotten some answers and that it's stuff that can be managed somewhat.

If you have read through this entire long, rambling post, you are very kind :) Spencer and I are incredibly thankful for and appreciative of your prayers throughout this difficult time. I still am feeling quite awful, struggling with immense pain and fatigue, and it will take time to see results from the treatment, so your continued prayers are definitely appreciated and humbly requested.

My, what complex and amazing bodies we have, eh? Reading up on the nervous system sure has been a neat reminder of how wonderfully God has designed us!

fibromyalgia

Looks like I have a label. Still waiting on additional test results to rule out a few other autoimmune problems, but my rheumatologist felt quite confident in diagnosing me with fibromyalgia during my first appointment with him.

I am incredibly exhausted and in pain and must confess that I've been putting off making a post on this blog. I think there's part of me that hasn't wanted to make this public just yet, as I'm still trying to come to grips with this diagnosis. Fibromyalgia isn't degenerative thankfully, but it's something that doesn't go away, so it's taking time for me to process that. Thankfully there are things I can do to at least optimize my health and make the most out of the few spoons I have :)

Since 2001, I have been labeled with chronic fatigue syndrome, as it best seemed to fit the many difficult, mysterious symptoms that I routinely struggle with at varying degrees of severity. Over the years, many doctors told me I didn't have fibromyalgia, despite the overwhelming fatigue and near constant pain I experienced - the pain was draining and difficult to cope with, but not severe enough to prompt anyone, even me, to seriously consider fibromyalgia. I had taught myself early on how to partially tune out the pain in order to function and it honestly became a *normal* thing for me-if someone were to ask me how I felt, I'd tell them I felt nauseous or dizzy, but the pain didn't even occur to me any longer as an *abnormal* symptom. Now that I look more and more into fibromyalgia, I'm amazed that no doctors up until now gave it any serious consideration, seeing as I have nearly ALL of the many symptoms...

It's been over two months now, that the pain became so incredibly severe and excruciating and it still has not let up (thankfully I have had a couple "not too bad" days sprinkled in these 2 months). A dear, sweet, wise friend shared, "maybe God is allowing [me] to have such severe symptoms so that the doctors can better diagnos what [I] need." I think she just may be right :)

When I have more energy, I'll try to write out a more thorough update. Thank you so much for your continued prayers and support. I have two more appointments next week and then God willing, I will be heading back home to my beloved husband!

Southern California

I'm not quite sure where to start, as I'm very fatigued and in pain, lacking the stamina to write out as thorough a post as I'd like.

I headed down to southern california yesterday. I'll be staying with my parents and have appointments set up to see several doctors, including a rheumatologist.

Over the past few weeks, it became increasingly evident to both me and Spencer that we weren't going to get the care I need in our rural medical community. My symptoms have also gotten increasingly severe and distressing over the past couple of weeks, forcefully prompting us to be more aggressive in our search for medical attention. So, after a good deal of prayer, counsel, and tearful conversations, we decided it would be wisest for me to spend some time in southern california, where excellent medical care is readily available.

Our hope and prayer is that the doctors I see in socal will be able to help figure out what is making me so sick, and once we have a diagnosis/some answers, I can head back up to northern california, where we can collaborate with them through correspondence as well as work with local doctors to manage and treat my illness.

It was an incredibly difficult decision to make, as we were greatly saddened and discouraged by the thought of being apart, but we believe this is the right thing to do, considering how sick I am.

Thank you so very much for praying for us. It is such an incredible blessing and encouragement. Your prayers and support mean such a great deal to us. We also want to thank you for the encouraging comments, emails, phone calls, letters, care packages, etc. There have been dark, difficult days that have been significantly brightened by a sweet card showing up in the mail or a simple email reminding us that someone is praying for us. Thank you so very much. We cannot weather this painful time alone, and we thank God for blessing us with such sweet, thoughtful friends and family :)

I have my first appointment this Friday morning (9/26). Please pray!