Erythromelalgia

Many of you have asked for an update on my health, and I've kind of put it off, because, well, there wasn't much to say.  My daily update for the last month and a half would have been, "Yes, still in a lot of pain, no, the doctors still don't know why." Not very exciting, and after saying that over and over it becomes depressing and just sounds depressing. Yesterday Todd and I finally got some answers, and came to that wonderful place where in retrospect you are finally able to see the many blessings in your life.  These are the times I like to send out update emails because they are, without fail, more interesting and positive than "Yes, still in a lot of pain, no, the doctors still don't know why."  In typical Heather fashion, this will be long and wordy, because it will end up going in our family blog so I like to include all the details.  Sorry in advance if this is more than you care to know.  Feel free to stop reading now and ask someone for the CliffsNotes version. ;)

One of my favorite hymns has always been Lead Kindly Light:

Lead Kindly Light, amid th' encircling gloom,

Lead Thou me on!

The night is dark, and I am far from home, 

Lead Thou me on!

Keep Thou my feet; I do not ask to see

The distant scene; one step enough for me.

The reason I love this song is because I'm really not good at that kind of patience.  I want to see ahead, know what's coming, and know how long things are going to take, especially during times of "encircling gloom." These lyrics remind me that if I'm just patient enough to take the next step that the Lord puts in front of me, that soon everything will make sense and I'll see how His hand has been in it the whole time.  Yesterday I finally made it to a mini-peak in this journey, where I could turn around and see the handholds and footholds so carefully placed by a loving Father in Heaven to get me to where I needed to be.

A few weeks ago, my friend and visiting teacher, Daralee Brockbank, sent me a text.  Her husband is a podiatrist and had felt impressed to tell her to have me look into a condition called Erythromelalgia.  I did, for about five minutes until it started producing a full-blown panic attack, at which point I closed the laptop and tried to forget that such a condition even existed.  

I went into the lab at Rockwood on the 26th of February (happy birthday to me!) and had 19 vials of blood drawn, some to be sent to the Mayo Clinic.  The girl drawing my blood informed me they'd been calling me the "marathon draw" all morning.  Not a title I'd recommend, in case you were wondering.  I went back in to the doctor a few days later and was happily told by my neurologist's nurse practitioner (Pat) that they had a diagnosis.  My heart ground to a stop for a moment and I felt light-headed.  After hearing "the C-word" once in a doctor's office, I don't think I'll ever be fully comfortable again when a doctor tells me they "have a diagnosis."  Thankfully, no cancer this time.  All of my tests had come back normal, they said, except for my 2-hour glucose test.  My fasting glucose was fine, but my two-hour level was still high.  In the pre-diabetic range.  My doctor told me that they used to believe that it took years of uncontrolled diabetic levels of blood sugar to cause neuropathy, but they now knew that even pre-diabetic levels could cause neuropathy.  So there it was, my diagnosis: Impaired Glucose Tolerance Small Fiber Peripheral Neuropathy. Basically, insulin isn't working effectively enough to remove the sugar from my bloodstream, leaving the sugar there to wreak havoc on my nerves and cause a bunch of pain.

My heart sank.  Not because of the diagnosis itself, but because it didn't sit right. Something in me KNEW that's not what was going on.  The nurse had given me the same diagnosis on the phone a few days before, and I had told the nurse the same thing.  I explained Pat, as I had explained to the nurse, that I just didn't think that's what was going on.  I told her that the two times this had hit me were both during times in my life when I was being extremely healthy.  Working out 6 days a week, eating a low-carb-almost-no-sugar diet, losing weight.  Then, when the first round of neuropathy hit, and landed me in a wheel chair, dealing with unspeakable pain, I soothed myself the way I always had...with food.  Over the next year, I regained weight, stopped exercising -- and the neuropathy got BETTER.  So I started exercising again, started eating right again, started losing weight again. BAM! Neuropathy is back.  It just didn't make sense to me that if pre-diabetic levels of blood sugar were causing the pain, it would get better when my blood sugars were likely at their highest and reappear when the levels were at their healthiest. 

All of this was falling on deaf ears.  I could tell just by looking at Pat.  They had done the tests.  They had the results.  There are many miracles that I believe happen along the way in this story, so I’m going to start numbering them.  Miracle #1: As I’m trying to convince Pat that there is something else going on, I feel my left foot starting to flare.  I know from experience, that I have two options at this point.  I can ask for some ice and try to stop it, or I can be in excruciating pain in about 5 minutes.  I chose to go with option 2 so she could see what I was talking about.  In a matter of minutes, my foot was swollen, red, hot to the touch, and I was crying because the throbbing pain was so intense.  I know what you’re thinking: “This woman has been on too many drugs for too long and has forgotten the definition of the word ‘miracle’!” Here’s why I claim it as a miracle: Pat came over and watched this happen.  Saw with her own eyes what I had been trying to tell them happened.  After examining my foot again, she agreed that she had never seen diabetic neuropathy do that before, and that there was definitely something vascular going on.  She ordered some more blood work and sent me home with orders to see me the following week.

Miracle #2: A couple of weeks ago, my visiting teacher, Daralee Brockbank, hesitatingly sent me a text.  I say hesitatingly because the text was telling me that her husband had felt impressed that he should bring a certain condition to my attention to mention to my doctors, and the condition was not a good one.  Erythromelalgia (hereafter referred to as EM because I still can’t pronounce, let alone spell that correctly.  Plus, in a strange way I feel like I give the condition more power or legitimacy if I don’t abbreviate it.  Maybe I should start referring to it as “the condition that must not be named.”  Or maybe I’ve just read too much Harry Potter.)  Greg (Daralee’s husband) is a podiatrist and is in the bishopric in our ward at church.  I sincerely believe that he was prompted by Heavenly Father to even THINK of this condition, as it is extremely rare.  I’m thankful for good people who choose to live their lives in such a way that they are sensitive to the whisperings of the Spirit, and who follow through on those promptings when they receive them.

Miracle #3: I randomly had to go in for a yearly physical with Dr. Smentek (same doctor who found my thyroid cancer) for our insurance.  During the physical, Dr. Smentek was visibly disturbed by my level of pain and went home to do a bunch of research on my symptoms, even though he’s an OB/GYN and had no responsibility to worry about this particular problem of mine.  More than that, he called Pat at Dr. Carlson’s office (my neurologist) and the two of them spent even MORE time together on the phone trying to go over symptoms and possible causes.  Later Pat informed me that one of the possibilities that Dr. Smentek suggested was Central Regional Pain Disorder.  This is a disease related to EM, and made me remember what Greg suggested.  I brought up EM as a possibility to Pat and she got really quiet for a second.  “You know,” she finally said, “we’ve only ever seen one case of it, but he might really be on to something there.” She promised to go over my case and the literature available on EM as well as the case of their other patient diagnosed with EM and talk to Dr. Carlson before my next appointment yesterday.  Seeing Dr. Smentek, having him take the time to research this pain, and come up with another extremely rare case that reminded me of EM? Having Pat have a patient with EM when only one in about 100,000 people have it? I’ll combine them, but in my mind they could even stand alone as separate miracles.

Miracle #4: I went in to see Pat for my follow-up yesterday, and she got to see another flare, as my left foot has pretty much been in a constant flare for the last 5 days or so.  She said that she and Dr. Carlson had talked about my case, my test results, and everything else and are pretty sure that I have EM.  This was difficult to hear.  Look the disease up and read about it for five minutes and you’ll know why I was scared to death in that moment.  The informal nickname for EM is “Man on Fire” disease or “Burning Man” disease.  Literal hell on earth.  No cure.  And yet, I was peaceful.  If that’s not a miracle, I don’t know what is.  I remembered three separate priesthood blessings (in our faith, we believe in the power to give healing blessings just as Christ did in his time) I have had in the last month that have told me that the pain would get better.  I clung to that faith and was able to feel calm.  Pat then went on to tell me that I would have to have some imaging done on my brain, then meet with a dermatologist, and finally that I would have to be seen at the Mayo Clinic in Rochester.  At this point, my mind was reeling.  She said that it would probably be five or six months before I would be able to be seen at Mayo, and my mind was already going over the logistics of leaving my family, finding a place to stay, the cost of travel, and whether or not insurance would cover it.  Which leads me to miracle # 5…

Miracle #5: When we moved here there was a lady in our ward who offered me a position working with her a couple of times a week.  I didn’t know it at the time, but Julie Craig would become one of my dearest friends and I could write a whole separate blog entry on how she has blessed my life.  In fact, I think I have written an entry like that!  But let’s stay on task, shall we?  Julie’s husband is a dermatologist who owns a successful practice here in Coeur d’Alene.  For a few years, he had been looking for a partner.  Several candidates came close to working out, but for one reason or another, they didn’t.  Finally, last year (I think) they signed the paperwork to bring on a new partner, Ben Ringger.  Also a couple of years ago, Julie mentioned that Steve (her husband) was looking for a new nurse, and our good friend Grant Ely was a nurse looking for a new position.  Julie and I threw the men together, and it ended up being a great fit.  Grant’s sister recently started having some strange symptoms, and Dr. Ringger (the new partner) was able to diagnose her, mostly because of where he spent part of his medical training…The Mayo Clinic.  This all came together in my head and I told Pat about Dr. Ringger.  She said that if he had experience with EM and felt comfortable diagnosing and treating it, she didn’t see any reason to send me to Mayo.  Now, EM is still a very rare disease, so, holding my breath, I called Julie and explained the situation.  She called Dr. Ringger and found out that not only had he worked with EM, but he also had enough experience with it that he felt comfortable saying that he could diagnose and treat me just as well here as they could in Rochester, and that he can get me in as early as next week!  When Julie called to tell me this, I literally burst into tears. 

So that’s where we’re at.  I am still in excruciating pain daily.  I’m managing it with a lot of drugs, ice packs, and cold water soaks.  My right foot feels almost normal again, but if I do not keep my left foot constantly cold, It flares almost immediately.  It's swollen to the point that it looks like elephantiasis.  I sleep in 15 min – 2 hour stints in the recliner chair in our living room, so I am constantly exhausted.  I cannot explain the level of pain when a full flare up hits.  It’s like my bones are being attacked with a sledge hammer while wasps are stinging the surface of my skin repeatedly.  It burns and throbs and makes me go into a panic attack and think that I’m going to pass out.  I don’t leave the house anymore unless it’s for doctors’ appointments, and even then I carry a cooler filled with icepacks.  I braved church last week and found that it was possible as long as I brought my little bucket with me and I went barefoot.  Kept my feet in cool water the whole time, and while I’m sure some thought it was strange, and others might have noticed that I nodded off a few times (no sleep+lots of drugs=tired Heather), it was wonderful to be back at church and feel the spirit and fellowship there.  I’ll try again next week as long as I’m not in the middle of a raging flare.

Where do we go from here?  I have to have some imaging done on my brain.  I know there are many of you who could make some wise cracks here…please do! J Then I meet with Dr. Ringger and we start experimenting.  There’s no one “fix” for EM.  Some people find they can lead a relatively normal life.  Others find they live in an almost constant state of pain.  I’m praying for the former.  I’m looking at these miracles and praying for more.  I’d ask that you please do the same, because I know prayers work.  I am so thankful for a Savior and a Heavenly Father who know me, love me, and are there for me even in my darkest moments.  I’ll keep everyone posted as I learn more.  I love you all and am so incredibly thankful for the support network we have.  I’m thankful for friends who have called or e-mailed, who have visited or brought lunch or flowers, or small gifts.  I’m thankful for people who have done research for me when it was too scary to do it myself.  I’m thankful for people who have taken me to appointments, driven my kids to places they need to be, or brought dinner.  Honestly, the amount of support we have here is humbling and I don’t know what we’d do without our friends and family. 

We love you!

Love,

Heather