Posts Tagged ‘dysautonomia’

Sometimes you can learn a lot about a person by noting what they carry on their person. I thought you might find it interesting to know what items help me get through the day.

My purse and my backpack, which hangs off the back of my wheelchair, seem to contain mostly medical junk. BP wrist cuff, gloves and lube and wet wipes (I said I have slow motility, right? well…I’ll leave the rest to your imagination…and no, it’s really not all that exciting…except for when it is…), pen, notebook, WATER BOTTLE, salt capsules (make them myself), Larabar (only snack food, except some baby food, on my diet I found that doesn’t require a cooler – I make all other food from scratch).

Hmmm, now I have to go digging to remember. Let’s see…. Remote control to my Spinal Cord Stimulator (implant), serious medical ID (on wrist) with 12-card fold-out medical ID in my wallet listing you know…like…everything. Lidoderm patches, pillbox with its goodies, wallet, extra hand wipes, flashlight (I fall over in the dark), chap stick, phone and earbuds (ok, that’s fun), and those little Colgate toothbrush/toothpick with the ball of minty stuff inside thingies. Sometimes a book. That’s all! Fits in two bags.

What do you carry to help you manage your health day-to-day? And how about the guys? Do you use a “man bag”?

Gutsy Girl

I’ve written about the physical problems I am having with the SCS and the possible need for surgery to correct the issues. I haven’t really said much about what’s going on in my head and heart regarding all of this. It is complicated. Easier to avoid, but not especially helpful to do so.

While it can really hold me back from growing when I need to open up and think through my problems, I also admit that it can be quite useful to be able to flip my emotional light switch and shut my emotions down to deal with the facts of a situation.

It’s like when I’m playing my flute for a funeral, even the funeral of a close friend. I have to have only enough emotion to feel the music. The rest I shut down with my ‘kill switch’ and block off so that I can get the task done and bless others through the music. I can flip the switch back on later, but I must turn it off to survive the hardest stuff.

Same here, just a different situation. Flipping the emotions off allows me to ask questions and get data, collect information, without employing a knee-jerk reaction. For better or for worse, the decisions I must make do require some “emotion mind” activation as well, without which I couldn’t really care for those around me simultaneously. “Wise mind,” they say in DBT, employs all three parts of our minds – physical/body mind, emotion mind, and rational/reason mind. Unfortunately, it leaves out the most important part – the Holy Spirit. Slight smile. That is my greatest advantage.

I’ve been very physically exhausted lately, but I think a lot of it stems from emotional exhaustion. Due to dysautonomia (Neurocardiogenic Syncope, in my case), I get very sick when I feel strong emotions, whether they are happy, sad, angry, or all of the above. My autonomic nervous system freaks out. Blood pressure, muscle and facial weakness, fainting, worsening sleep apnea, heart palpitations, GI problems, all those processes your body normally handles on its own go haywire for me and it takes a lot of effort to consciously control them by following the advice of my doctors and using medication, rest, diet, etc. It’s no surprise then that getting bad news about my SCS was a huge hit. That came on Monday.

On Tuesday I had friends over, a couple whose company I really enjoy and who have walked through the valley of infertility together. They are a humorous lot, and we had many laughs and discussion of daily life mixed with the more touchy topic of infertility…the conversation weaved in and out, which was great and seemed natural for a couple who has handled their struggles together for over 20 years. It was a very healing time, a time for me to express my heart and desires and get wise advice and hear their story. They really ministered to me and I felt less alone (and less crazy) because they didn’t judge. They understood that my feelings about the big “i” issue were natural, normal, and that I’d need to keep bringing my emotions to God and working through it now and in the future (in other words, it’s not one of those “oh, now I’m done grieving and it won’t come back again” kind of issues, if those even really exist). So on Tuesday I was still trying to turn off my SCS worries and emotions while turning myself on emotionally regarding infertility, just enough to interact well with and benefit from my friends’ company. It seems I have an emotional ‘kill switch’ for nearly everything painful in my life.

On Wednesday, I met with my GI psychologist, Dr. OE. I had not seen her since before my surgery, and obviously a lot has happened since then. We talked about the SCS and talked facts, and after a while she said, “I’m most concerned about how you’re managing this emotionally/mentally.” Yeah, there’s that. 😛

Getting into that stuff is exhausting. It is not bad. It’s just exhausting. Naps and early bedtimes (yesterday’s was 3:30pm) are needed. Today, after writing this blog post, I’ll be ready for a long afternoon nap. If I don’t sleep after emotions run high, dysautonomia will kick my butt from here to China. It is already doing so and I feel lucky that I haven’t passed out yet. The dysautonomia itself makes it hard to work through my emotions. I have to choose which will suffer more – my physical body or my emotional wellbeing.

I often say and think to myself, “I’ve got to shut these emotions down right now so I can handle all of this. I’ll turn myself back on later so I can think it through and get over it.” But that’s not very rational, as one of my friends pointed out to me yesterday. She told me that life just doesn’t work like that. We don’t get a break between the raindrops – a week to ruminate over some issue and then ‘move on’. “You ARE processing through this, Sarah. You are doing pretty well. I think Tuesday was really good for you. It made you put the SCS stuff on the shelf so you could give attention to something else and it was helpful for you to talk to someone who could be sensitive to your concerns.” I felt like Dr. OE thought I was doing pretty well with what I have on my plate too. Maybe I’m just too hard on myself? Maybe other people, if they were in my shoes, would have an equally challenging time getting through all of this. Who knows?

I’ve needed honest prayer times with God where I lay my emotions and thoughts out before Him. I always feel better when I’m done unbottling what has been so tightly corked. It comes with lots of tears, shed in private. And it might be that I have so much bottled up that I’m letting out at once and doing so is overwhelming…but if I did it more frequently and the list was kept relatively short, it would be easier? …Maybe?

I’ve needed healthy interactions with gracious friends who love me and help me put life into perspective. These are all good and helpful. The downside is that when they come in short succession, they don’t leave me with much time to wind down and filter things through before going on to the next one. Then again, that’s life, right? We rarely get such opportunities. When it rains, it pours, and you’ve suddenly got an ocean in your living room rather than a puddle. You’re swimming with Willie in a pool that’s too small! (I’m really enjoying that mental image. LOL. So true.) Forget the rain slickers – just bring out the scuba gear, why don’t ya!

There are times I may appear stoic or give answers to friends’ questions about how I’m doing with mostly facts and little emotion. It’s certainly not that the emotion doesn’t exist. I just wouldn’t want to express it and lose my cool. 🙂 Besides, if I laid it all out, my friends would be overwhelmed. I don’t have much of a middle-ground. I’m either clammed up or it’s all hanging out and dripping off my sleeves. Truth is…I’m never entirely removed from that pool filled with life issues, taking up my living room space. Willie the whale is like the purple elephant of my living room ocean – hard to forget. Read all the symbolism you can into that analogy. Be assured it is intended.

Last week my friend Mike decided to buy me a helium balloon while we were at the dollar store. The gesture was cute. I told him I didn’t need one – I was just fine. Anyhow, he went up to the balloons and (we were kind of holding up the line, so I was getting a bit anxious) he said loudly, “How about this one? It is pink!” and it read “It’s A Girl!” Lol. I wasn’t quite sure what to say….big smile. “Uhm, well, I think that’s for baby showers, Mike.” He didn’t miss a beat…or maybe he did. “Oh, so do you want that one?” he asked with enthusiasm (of course not thinking anything of it nor realizing its potential relevance…). “Uh…well…” I said, not sure what to say. It kind of plucked strings on a lot of different levels and left me nearly wordless, with a little cringe inside. He bravely tried again. “What about the bear?” “If you insist, I’ll go for the smiley face. That’s fun,” I said. So I became the owner of a very happy yellow smiley face helium balloon with a yellow string. 🙂

Well, a few days ago I decided to get creative. Sometimes I do things on a whim because if I don’t do them, they will just nag me. This was one of them. I took a marker and I drew three tears below one of the eyes on my smiley face balloon. It seemed so right to me, expressed exactly how I’m feeling these days. “Sorrowful yet always rejoicing”.

In many ways I am truly happy and joyful these days. I have more hope than I’ve had for along time and I’m grateful to God. In many ways I’ve also hardly been more heartbroken than I have ever been before. Both experiences are intensely genuine and true. And I felt like expressing that through a little “art” made me feel better. To me, the smiley just didn’t look “right” until I made my adjustments. Who knows…I might just buy another smiley balloon and make a similar adjustment, but keep it (airless) in my bedroom so that on one side of the smiley I can write down things that I’m happy or joyful about and on the other side I can write things that have been challenging and sad, and keep it as a 2013/2014 “visual journal”.

It fits my personality to do things like that, even though these things would have little to no understandable meaning to others. It’s for me, not them. Maybe in a few years I’d go get it filled with helium and let it fly away? I enjoy symbolism, music, analogies and poetry (can you tell?). They help me express and ‘get out’ what is gripping me inside, and I feel a release when I write or create something representative of what’s inside. I’m glad to have even just a few healthy means of emotional relief.

So, that’s the “other half” of me these days.

I haven’t recently told you what big developments my doctors and I have been working on lately to figure out what is wrong with me.  I realize my non-medical friends’ eyes may glaze over while reading this.  Don’t worry; my spell-checker doesn’t know what to do with the medical alphabet soup either, so I guess you’re in good company!  The short of it is…I may have narcolepsy or dysautonomia/POTS and we’re trying to figure out which.  I’m seeking treatment from a specialist in Florida for the possible dysautonomia, and soon I will most likely be undergoing a ketamine infusion in Winston Salem for the CRPS/RSD.  Details below.

Picking My Doctors’ Brains:

My sleep neurologist suspects narcolepsy and/or dysautonomia and has tested me for seizure disorders (so far negative I believe).  I was also sent to a cardiologist, by my primary care, who confirmed my heart is fine (yay – I knew my heart was fine…the cardiologist just thought it was psychological…grrrrrr).  My pain management doctor believes the combo of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) (this diagnosis has been nailed shut, FINALLY, and won’t be changing) and Fibromyalgia (diagnosed at age 18/19) has done a number on my autonomic nervous system, so she is also casting her vote for autonomic dysfunction.  And my gastroenterologist has also voted for dysautonomia. So at the moment, we are down to two general diagnoses for which we can test – narcolepsy and dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS).  I am being sent to two more neurologists (so I have three neurologists now?  Yeah, I think that’s right) for tilt table testing and I have no idea yet what else.  These tests are for autonomic dysfunction (i.e. dysautonomia).

Is It Narcolepsy?

My sleep neurologist thinks I could have narcolepsy because I have many of the symptoms.  A) disturbed sleep and daytime somnolence (sleepiness), B) sudden weakness – could be cataplexy (though if I do have cataplexy, I admit my version is fairly atypical in its duration!), and C) hypnagogic/hypnopompic hallucinations and sleep paralysis.  I’m grateful that there are tests to rule this in or out, though from the brochure she gave me on narcolepsy and some info I read online, it seemed as though getting the proof to show up on tests wasn’t always easy.  Interestingly, my sleep neurologist told me (like my pain management doctor had) that the diseases I have can often cause dysautonomia.  Narcoleptics often also experience autonomic dysregulation.

Is It Dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS)?  (Dude that’s a long name!)

Ok, you’re probably like “dys what??!!”  Me too!  So, you probably remember from high school biology class that the autonomic nervous system controls the “automatic” functions of the body; all the stuff that happens in your body that you don’t usually have to think about.  This includes breathing, digestion, heart rate, blood pressure, temperature control and that lovely word “homeostasis” or the balance of all these systems and conditions within the body.  If an organism’s homeostasis is disturbed (like when your temperature is too high; you have a fever), that organism has got problems, man.  So I claim it – I GOT PROBLEMS, MAN!  🙂  Now imagine many of these “automatic” functions in your body aren’t working correctly and you feel constantly sick, experiencing really “weird” symptoms that doctors and even you yourself can’t explain or understand…after all, this stuff is supposed to happen automatically.  If you want to know more, check out http://dinet.org.

Suffice it to say that when you read the list of dysautonomia/POTS symptoms, I happen to have collected about 3/4 of them.  The diagnosis looks likely.  I hope that if I do have it, the problems will clearly show up on testing (since doctors don’t believe anything they cannot see on paper!!!).

The neurologists at Duke will perform the tests, but as they are not specialists in Dysautonomia/POTS, I am hoping to eventually travel to see Dr. Thompson in Pensacola, FL, who IS a Dysautonomia Specialist…one of only a small handful in the United States.  He and I have been in contact and I am ready to schedule an appointment, though it will be a solid 6 plus months before I can actually see him due to his patient load and his own health difficulties (he himself has dysautonomia/POTS).  I need someone to treat me who has more than just an educated guess about what they are doing!

If I Had A Choice…

If I had a choice in which disease I had, I think I’d choose to have narcolepsy over dysautonomia/POTS because narcolepsy seems easier to treat!  But that choice isn’t mine, because if it were, I would have chosen “D) NONE of the above”.  Perhaps if I could not choose “D) NONE of the above,” I’d choose something fatal because it seems to me that it might be easier to die than to keep living with all the challenges I have in my life.  But I won’t burden or depress you with those thoughts today.  I’m not depressed; I’m realistic, and I know the road ahead (with treatments and management but no cure) is likely to be harder than any road I’ve traveled to this point – I’m realistic and I’ve been around this block many times.

I am encouraged to know, by faith, that God is glorified as I continue to trust Him and share my hope and faith with others.  God has a purpose for both my life and my pain.  He’s making sure my ultimate hope isn’t in this life, but in Heaven, releasing me from my earthly bonds through suffering.  Ironic that the shackles of suffering can make me free from love of the world, but it is true.  This life is such a mix of suffering and gracious blessing through my Lord.  If I did not have God’s sovereignty to ground my heart and remind me of His ultimate plan for my good and His glory, I would have given up long ago.  (Who can survive such hardships without the security of knowing God is in control and that He has a purpose?  Perhaps it’s only the fear of death that keeps the agnostic and atheist alive.  I can’t imagine surviving without God on my side, however; I don’t even want to contemplate that.)  But as He continues to give me grace to endure, I hope to continue to endure for His glory and the wheeling testimony that my life is to others who see my desperate weakness and Christ’s abounding strength.

In The CRPS/RSD Department…

I will be seeing Dr. James North next Friday to have him evaluate my suitability for a ketamine infusion procedure to help decrease the pain and symptoms of Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy (CRPS/RSD) in my legs.  I should know more about this after my first appointment with him.  If I am a good candidate for the therapy and I am in agreement with proceeding (I am the one ultimately responsible for which risks I accept or deny; I’m the one ultimately responsible for my own healthcare), I should be able to start the treatment soon, likely in a hospital setting due to my other medical issues.
I have many questions about the therapy and its risks, but I also have a lot of pain and sincerely desire relief.  While I’m not yet desperate nor willing to accept any treatments that I believe have a significant risk of permanent injury or increasing my longterm pain, I guess it’s not too hard for me to understand why people in chronic and severe pain would become irrational in accepting otherwise unacceptable risks (suicide included) as a last-ditch-effort to relieve their pain.  Pain plays games with our minds.
My hope with the ketamine treatments is that it may decrease the 1) temperature hypersensitivity in my legs, 2) burning fire pains, 3) allodynia (hypersensitivity to touch), 4) swelling, 5) and perhaps some of the myriad of other problems I have due to CRPS.
My fears are that the ketamine treatments may 1) increase my visceral hypersensitivity (ability to feel inflamation/distention/stretching etc in the intestines and abdominal visceral organs…i.e. very painful!) or cause longterm decreased motility adding to my other disorders, 2) cause me to hallucinate vividly or become psychotic, even after the medication has left my body, or 3) not work at all (I’d be very upset and sad).
Given that my pain has been severely increasing in the last few days as the temperatures have risen, I know I’m going to have a very hard time this summer and I’ll need to hermit myself inside to avoid the reactions I have to temperature changes outdoors.  I told my pain management doctor that I expected I’d come running to her in a few weeks begging for pain relief.  Well, I’m nearly at that stage.  In her notes, she said we could consider doing more nerve blocks at that time.  The primary purpose of the nerve blocks is to determine if radiofrequency lesioning (burning the nerves so they no longer work) of the sympathetic nerves in my legs may be of benefit to me.  Yet from what I’ve read about dysautonomia, radiofrequency lesioning is contraindicated (meaning it can go badly or have negative and unintended consequences).  Plus there’s always the possibility of the CRPS/RSD spreading due to the procedure’s invasive nature.

Gutsy Girl’s Domain…

I have had more gastrointestinal difficulties in the past few months.  At this point I don’t know if it is due to the medications I have started like Lyrica, or if it’s just my body being mean.  I am still 100% strict on my diet (the Specific Carbohydrate Diet) and it certainly continues to make my GI problems survivable; it at least brings my problems down to a dull roar.  Sometimes I have a good week, and other weeks it seems like the wheels fell off.  :/
Now I know that almost everyone who has dysautonomia is bound to have either gastroparesis (intestines don’t move food etc along…it’s like they are paralyzed, leading to chronic constipation) or another significant functional motility disorder.  This doesn’t surprise me.  I’ve often asked my gastroenterologist WHY my gut motility was so messed up and she told me it was some problem with the communication between my brain and my intestines.  Now she suspects it’s dysautonomia.  Makes sense.  I just hope someone can figure out how to treat it so that I can enjoy normal motility for the first time in my life – a gift so many people take for granted.
I often feel frustrated because I do “everything right” when it comes to the diet I adhere to for my GI diseases, plus the lifestyle changes I’ve made including frequent exercise, drinking at least 2 liters of water per day, taking my medications and using enough laxatives daily so that most people would be tied to the bathroom for a week.  I do it all, and sometimes my gut still rebels and the bacterial infection (SIBO) gets out of hand.  I’m honestly out of ideas to help myself.  I really have exhausted every avenue I could find.  For now, I’ll just keep doing what I’m doing….  (And no, I don’t want to hear about how your Great Half-Aunt Thelma was cured by bloodletting with leaches while standing on her head and eating snail syrup from a golden spoon. …Just sayin’…)
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So that’s the scoop, and as my Gran sometimes says, “…and I’m sticking with it”!

Prayers Please!

Please do pray for me as you think of me.  All you have to do is pray through my lists of things I’m hoping will and won’t happen as a result of treatments.  Pray that I’ll have wisdom in deciding which treatments to deny or accept.  I also want God to bless me with a strong mental and emotional constitution to accept the diagnoses that are likely coming in the next few months and trust Him with the details.  And faith – I need a whole lot more faith.  I want to be a blessing to others, even though I often feel I have nothing left to give.  Pray I’ll be a blessing.  If you think of anything else to pray for…go ahead a knock yourself out!  Otherwise, if you have the gift of tongues I envy you…use ’em!  😀  Thanks.

The appointment started well, he asked me where I was from and I told him the entire east coast, as I’ve moved many times.  I jokingly told him if my accent changed mid-convo he’d have to excuse it since I’ve lived so many places.  We got a laugh and he said he wouldn’t make any judgments at all.  He asked me why my doctor referred me and I explained that I was there for more than just palpitations and said I’d had cardiac testing before and it seemed to be more my autonomic nervous system.  He sounded open to the idea.  I explained my symptoms, those weird ones (a list I brought with me and just rattled off).

He asked about previous cardiac testing and I told him I’d had a holter (heart) monitor strapped on for 24 hours before, but that they hooked me up on a day when I was having fewer symptoms and of course they didn’t catch the palpitations – I was not having any that day.  I’d also had an echocardiogram in 2010 which came back unremarkable (which is good!).  But I reiterated that if you felt like passing out each day like I do, you’d be somewhat distressed about it!  He agreed.  He asked if I’d actually passed out and I told him I had and that I’d been to the ER a number of times in 2009 and 2010.  He seemed less than impressed when he found out I had not needed stitches after hitting my head, which I found weird, but…  We kept going.

He asked about exercising at the gym and I described my routine there and why I exercise due to the CRPS.  He asked what limits me when I workout at the gym.  I told him it was a combination of things that limits me – I fatigue much quicker than most people, I don’t progress with exercise, burning pain, exhaustion, balance, and muscle tightness.  He asked a bunch of demographic and social questions…you know – family and friend support, employment, drug use, family history.  He asked about the asthma, and I also gave him my normals for resting heart rate, blood pressure and oxygen sats.  I’ve tested these things in the last year myself, trying to figure out what’s wrong since my doctors have all been buffaloed [sic].  I kept hoping each time I bought a new meter (blood pressure cuff, o2 sat meter etc) that it would hold the answers…it never did, but I at least learned my normal ranges and can reassure myself I’m not going to keel even when I feel like I am.  Evidently giving doctors this info isn’t always seen positively, however….

He checked out pulse points and listened to my heart.  I warned him not to touch my legs due to pain.  He asked if I have belly pain.  Really?  No duh, dude…did you just hear me list my GI disorders?  I played along and told him again that I do and here’s why.  I told him about my diet, that I make all my foods from scratch using about 25 main ingredients to help manage the GI disorders.

He asked if I feel like passing out every day.  I said I don’t, some days I’m fine, other days it’s awful, and there’s no rhyme or reason to it.  The longest stretch I had was daily for five months, and now I’m cycling faster than that, but on bad days I have to drop things from my calendar.  Adrenaline can help me for a little while but afterwards I crash.  I told him I perk up for doctor’s appointments due to adrenaline, but when I get home it’s NOT pretty, so doctors don’t tend to see me when it’s really bad.

I was supposed to ask him for a referral to psychiatry because it’s been almost impossible to find a psychiatrist who will take my insurance.  So my doctors and psychologist told me to try to get in at Duke through my cardiologist.  So I did.  Bad move.  Bad, BAD move.  Lesson learned:  when you don’t yet have a rapport built up with a new doctor, DO NOT – I repeat – DO NOT bring up anything related to mental health!!!  Shaking head.  He asked about why I had been on Wellbutrin and I told him I was depressed and had suicidal thoughts because I was in extreme pain every single day, had not eaten for nearly three weeks, not sleeping, doctor’s would not help me, and I just wanted relief.  Of course the Wellbutrin made me psychotic.  I told him I was on Lyrica now and that I was having difficulty at night, so I needed a psychiatrist to help manage the side effects of medications I’m taking for pain management.  I have good reason to be very careful about which meds I choose to take.  He told me to take up the issue with my primary care doctor, and I explained that we’d already tried that and nobody took my insurance.  He said he couldn’t write a referral and there needs to be a “captain of that ship” to steer the direction of my healthcare, that he’s considered a consultant so he can’t consult another consultant (i.e. refer me to someone else because he’s already been referred to by someone to begin with).  I told him my pain management doctor was the captain of my ship and I’d address that with her again.

He said his Gestalt (which he said meant “recognition of patterns” as I wasn’t sure what he meant – think those black and white ink blot cards) was that I don’t have severe cardiac problems.  “I say that not trying to minimize all the symptoms you have; I recognize you have many and that they are really disturbing you and I’m not saying they aren’t there.  But after doing this for 24 years, you get input from what patients describe and what has been done in the past.  You get a sense…is there a major heart issue here or not.  My sense is that there’s probably not.  That said, I would like to help you by obtaining objective data that would support my clinical impression.  Today I’d like to get an ECG and a 48 holter monitor to see if there are any markers for advanced cardiac arrhythmia.  And then finally, even though you’ve had an echocardiogram a few years ago, we can revisit that and make sure the pump chamber is strong, the valves are okay, though your valves sound ok when I listen to you, and make sure we actually look at the heart structure and function.  So what I can tell you is this – IF we don’t see any markers of high-grade arrhythmia and the heart structure appears normal, that your chance of having a serious cardiovascular problem that would explain your symptoms approaches zero.”  I nodded and mmm hmmm’d appropriately as he spoke.  “And that’s really what you’re here today for.  Obviously with that and all your problems, I won’t be able to shed light on things that will get rid of all those problems and you don’t expect that.  My segment here is to come back and tell you and tell your referring doctor is there a major cardiac problem or is there not.  That’s my limitation.”  I asked who would help with circulatory problems, like peripheral issues.  He said he didn’t examine my periphery because I didn’t want him to touch my legs, and that he didn’t hear things that would suggest PVD, and PVD doesn’t come out of the blue.  At this point I thought to myself, “I’m not talking about PVD!” but I realized he’s a cardio and it’s his job to think cardio so he was stuck in his little box.  “PVD usually occurs in older patients who have been smokers and have a lot of other risks for atherosclerosis, so you don’t have any of those risks.  If you wanted me to examine your legs…” and I said, “I can tell you how to do it.”  I asked to borrow his arm.  I touched his arm in several different ways explaining, “You can touch me like this, but you cannot touch me like this…or like this…or like this…” hoping he’d get the point and showing him that using an increased surface area for contact would cause less pain.  He said it made sense and the nurses would get me on the table, we’d do the ECG and examine my extremities.

The whole reason I agreed to have him touch my legs and check the circulation was because my legs turn blue and all kinds of unhealthy colors, especially my left.  I didn’t know where to test the pulses myself, otherwise I would have.  And looking back, I wish I’d asked him to instruct me in doing it myself.

I told him I’d brought two research papers and he said he’d be honest – he wasn’t going to look at them.  I wasn’t quite sure what to say so I thanked him for his honesty though it was a major mark against him in my book that he wouldn’t read solid research.  I mean…really?  They weren’t long studies either (and for the lazy doctor, almost all studies have a Conclusion/Discussion section at the end!).  “This stuff really doesn’t impact what my role is here,” he said.  “Wow,” I thought to myself.  I got the impression that this doctor, while probably very good at Hearts…was just that – ONLY really good at HEARTS, and nothing more, which would limit him even in his own boxed-in world of hearts because EVERYTHING IS CONNECTED.  Those studies might be the very link to the ANS issues I said I was thinking were driving my symptoms.  Anyhow, he left the room and the nurses came in to help me up on the table.  I warned them very sternly NOT TO TOUCH MY LEGS!!!  The ECG was boring, which is good.

The cardio came back to check my pulses in my legs.   My stress level was very high but I was trying not to show it so I took the otoscope down from his wall to amuse myself and check out my wristwatch.  The cool thing about looking through one of those is that close-up objects look magnified, but farther-away objects look smaller.  It helped me pass a few very high-stress minutes waiting with a harmless distraction.  “Are you checking out your ears?” he asked.  “No, just my watch,” I said as I goofily tried to return the otoscope to its home on the wall without dropping the thing.  “Are you hypersensitive from the knees down?”  Yes, I explained.  I reminded him to use a broader surface area when touching my legs.  He talked about where he was going to touch me and took his time.  I understood that he wanted to prepare me but I was already at that point where I was ready to get this part over with!  Femoral artery first…I’m okay with that…abdominal aorta…all’s well.  He asked, “When you’re in the gym, do you ever get on like the stair-climber or anything like that?”  I thought he’d had to be crazy to ask…stairs?  “No,” I said.  I mean, I wasn’t going to tell him I thought he was weird for asking.  He was stalling in getting the leg-touching done; I wasn’t in a mood for any more conversations!  Popliteal artery (behind the knee)…didn’t bother me too badly but I was nervous and tense as all get-out.  He started talking about veinous insufficiency.  Looking at my legs, I knew the color wasn’t bad today because the temperature had been PERFECT for me.  I interrupted him (again to hurry the process along) and said, “My legs often turn gray, blue, purple, mottled, red…but right now my legs are the right color,” and he said “they are” (again…no duh, Shirlock) and I continued “but when I get cold by even a couple degrees they get blue and if I get hot they get red and swollen”.

Posterior tibial pulse…he told me where it was and said he couldn’t use his palm but he’d use the pads of his fingers.  I showed him again what would work.  NOW THIS ONE HURT LIKE THE DICKENS!  I felt mad because though we’d covered adnauseum how to touch and not touch, he forgot about his dumb thumb!!!  He told me he’d use the pads of his fingers, but he didn’t mention his thumb.  His thumb was pushing like a knife into my leg because he was squeezing to feel my pulse and he didn’t think to do it with just his other fingers and no thumb!  I wanted to deck him with all my fingers, including my thumbs!!  I held on.  He still had to do the other leg, so I didn’t complain even though I was mad and wanted to run away.  I felt that trying to explain what he was doing wrong was only going to drag out the process.  Dorsalis pedis…oh crap! there’s another one to test?!!!  Yep, there is, and it’s in one of the worst parts of my legs – just before the toes.  I didn’t say anything.  After he felt there too he said I had very good pulses.  “So what does that tell us?  It just tells us that for one it doesn’t look like you have veinous problems and arterial flow appears normal so it really answers that question.”  He talked to a nurse while I tried to gather myself together mentally – the touching was over though I still had pain from it.

I told him I had two questions for him.  The first was whether he wanted to wait to strap me up to the holter monitor until I was having a bad day so he can see it.  He said when you look at the data on cardiac arrhythmias, if a person has severe arrhythmia, it’s not like there is not going to be a marker for that.  In other words, that you have absolutely nothing and suddenly you have V-tach or a problem that needs to be treated with medication.  I reminded him that on bad days I can have the palpitations happen several hundred times and on good days it won’t happen at all.  He reiterated his sense that I probably have a little palpitation but that just ruling out high grade arrhythmias is adequate and doing at least due diligence.  (I thanked him for that, as I appreciate thoroughness.)  Some people may look at the chart and see it was done before and ask why I am doing it again and I’d say it’s because these things are really bothering you and you’d like to know whether it’s an issue or it’s not an issue.  I explained in a sense it didn’t matter if I agreed or not with him (since he’s the doctor who knows about hearts and I’m not, so I trust his expertise…though I’m not sure he understood what I meant when I said the former), I DO happen to agree that it’s not a heart thing and I’m not especially concerned about my heart in particular.

You see, at this point, I was wondering about the oddity of some of his questions (stair climbers?  – I almost thought that was a joke) and responses (telling me again and again what I don’t have…like…I wasn’t even worried about PVD or V-tach, for example) towards the later part of my first visit with him but for some reason I still didn’t expect he was a big bad wolf.  I was annoyed that he didn’t see himself as being a “team player” in the broader scope of my healthcare management, and I knew his unwillingness to even skim a small research paper was a bad sign.  Yet I appreciated that, all in all, he spoke at a medical level that I understood (not too advanced, not too dummied-down) and he explained himself and his reasoning well.  Whether or not I agreed with him was a separate issue in my mind – he was good with communication as a whole.  I wish he’d left it there, however.

The second question I asked because I realized other than doing some tests to rule out heart problems, he couldn’t help me either because he really didn’t know enough about what I’m experiencing (not necessarily any fault of his own) or because he’s chosen to box himself in so tightly that he could not think any more globally than “HEARTS HEARTS HEARTS” as if I’m just some disembodied heart without, well, a body of parts that work as a whole including that heart.  Anyways, I said “If you’re not the right person for me to get answers from regarding the suspected autonomic nervous system problems, who IS the person whom I need to see next?  What is the next step here?”

He had not been slow in answering my previous questions.  This time, however, he stumbled.  “Well…right…uhm…”  I figured he was just narrowing down the choices and trying to help me get to the best person who could help me with my physical problems.  “How do I get in to see that ‘magical’ person?”  “Uh, right, well…” he continued stammering.  “I’ll be honest with you,” he said.  “Please,” I responded.  (whoops)  He continued, “I’m not sure there is an autonomic issue here.”  “Ok,” I said, curious as to what the alternatives might be.  If he was telling me it was not something that he’s already said wasn’t in his specialty to evaluate or diagnose, then surely he must have some other idea.  “I mean, I’ve been doing this for a couple of decades.  Autonomic dysfunction patients are, in my experience, have a different constellation [of symptoms].”  I thought “Oh great, he’s pulling out his resume, and I have a feeling it isn’t to comfort me in his experience as much as it is to assert his knowingness.  This is either the second or third time in this visit that he’s mentioned how many years he’s been doing this.”  “So you know…this is a difficult…you’re asking me this question and I’m going to be as honest as I can be and you may even think brutally honest, but you had asked me if I could send you to a psychiatrist within the Duke system…and I told you that I would feel more comfortable with you arranging that through your primary care doctor, and I think that’s the right way to go.”  “Ok,” I said, absorbing what he’d just said.  I knew what it meant already.

“So are you telling me that you think it’s in my head?” I asked almost immediately.  “I think that you have a lot of somatization, soma-ti-zation means that a lot of symptoms and a lot of concerns that are focused inward to your body.  You had papers on that and I already know about the pain cycle sort of thing…” OH MY!  NO!  THOSE PAPERS WEREN’T ABOUT PAIN AND IF YOU HAD JUST SKIMMED OVER THEM OR ASKED ME FOR THE 5 CENT TOUR, YOU WOULD HAVE SEEN THEY WERE ABOUT THE CORRELATION BETWEEN CRPS AND AUTONOMIC DYSFUNCTION!!!!!  I didn’t say that though.  “But I think that, uhm, and maybe it’s because as physicians when we don’t understand something exactly, we…” I cut him off to add “blame it on the brain” and he kept going “and I understand that; maybe that’s what this is, and maybe I’m guilty of that as well – I’ll be honest”.  I wanted to say “yeah, you’re guilty alright!” but I didn’t.  “But, uhm, you asked me and that’s my guess.  But that’s not to say that we’re not going to look CAREFULLY at your cardiovascular system and I have today – I’ve listened carefully to your complaints, your symptoms, your physical exam, and you know things look normal from a heart standpoint.”  The tears began rolling down my eyes.  I had stopped saying “ok” or nodding, but I was listening carefully.  I was grateful that he could admit some doctors are butts that blame it on the patient when they can’t figure something out.  I have no way to know how sincere he was in admitting he might be a mugshot doctor as well, but I don’t think I need to know really.  I knew what somatization was before he spelled it out in syllables – while it’s not the same as hypochondria, to most medical professionals it might as well share the same pea pod.  As expected, doctor mugshots came back to my mind – that long list of people who haven’t believed me.

I took the calm approach as the tears rolled and I tried to keep my voice as even as it had been.  “Well, I guess from the patient’s perspective (I pointed to myself), when a doctor tells you it’s in your head, it hurts.  But yeah, I am tired of feeling like I do typically.” “I see that,” he said.  “I had chosen to go into the medical field, in part, because I have worked so hard all my life to manage my health problems and now I work on my diet and exercise, and I WOULD NOT do all this unless I actually HAD to because this really IS NOT the kind of life that I anticipated or wanted or would choose.”  “I understand that,” he said.  “Uhm, but I would, you know, really like you to try if you can help figure out what someone does when they feel like this…what the PHYSICAL causes are as well (rather than just the mental ones) because I really want to be well.”  “I see that, and that’s why I am going to go around this block again to make sure we do what kind of heart and cardio testing we can.”  The tears were really rivers, but I was still keeping it real with him though you couldn’t miss the fact that I was crying now.  “There’s GOT to be SOMEBODY who can help me!”  He said, “It’s hard for me to know who that person it; it really is.  I have the tools that I have to see whether a person has cardiovascular disease.”  I answered, “I understand, like you mentioned earlier, that I can’t expect any doctor to have all the answers.  I didn’t have all the answers when I had my own patients.  But I think the best thing a doctor can do is to do as much as they can, and that sometimes takes them beyond the call of duty perhaps, to try to find the person who can help.”  He said, “If I knew the answer to who might help you, I’d be right there.  I would.  I just don’t know who would have the abilities, the capabilities, the knowledge, to answer your questions.  I’m sorry.”  Though I didn’t say it, I wish I had asked, “Then could you consult with other physicians to see if THEY might have ideas about who can help me?  It doesn’t have to be all about what YOU know!”  He continued, “Sometimes being a doctor means realizing what your limitations are.”  “Right,” I said, because I agreed – we all have limitations and it’s better to understand and accept them rather than pretend they don’t exist.  Sometimes accepting them, however, means we also accept help in our areas of deficiency and we capitalize on the strengths of others…and in this case, I think that means a doctor who doesn’t know who to recommend I see next can reach out to his or her medical social network and ASK.  “But we will check this out, okay?”  “Alright, thanks,” I said, in my squeaky and trying-not-to-bawl voice.

The nurses and doctor left saying they would get me hooked up to the holter monitor.  Once the door shut and I had a few extra tissues, I cried more but I knew I couldn’t let it get out or I’d not be able to reel it back in before they came back, and I didn’t want to be a blubbering mess.  After a few minutes, they returned.  There was a new nurse to help along with the other two.  I couldn’t transfer or step off the table myself without potentially landing on my face, so I really did need some help (respecting my own limitations and seeking help for my area of deficiency!).  The nurses were problem solving the best way for me to get off the table without falling and I was telling them how we could do it when the new nurse suddenly grabbed my legs as she asked if she should lift them!!!  Oh, I nearly had a heart attack and then the cardiologist probably could have done something for me!!!  It’s one thing for me to touch my own legs, it’s another for someone else to touch because I have no control over when or how they will touch but it can be tolerable when I am expecting it…it’s a much worse situation when someone else touches and I wasn’t anywhere near expecting them to do so!!  I shot my hands down to my legs to remove her hands in self-protection as I let out a small yell.  The touch hurt.  “You can’t touch her legs!” the other nurse said hurriedly as she began to apologize to me, “Are you okay?  I’m so sorry, we forgot to tell her…”  I felt a little snappy but said as calmly as possible, “Yes, you sure did forget to tell her.”

And people wonder why I hate being touched, why I hate doctor’s appointments, why I don’t trust doctors or medical staff anymore, why this is so bloomin’ exhausting?

This was just one medical appointment I had last week.  But I have specialist doctor appointments EVERY DAY of the week plus medical tests.  So all the emotion and energy packed up into this one appointment is magnified and repeated many times each week and it’s very hard.

The experience reopened up that can of worms I’ve been trying to seal shut – questioning whether it really is in my head.  So I talked to my psychologists about it last week and this week.  My psychologists, both of them, plus my other specialists confirm it’s not all in my head.  I really am sick, I really am having problems.  There are things I wish I had possessed both the time and mental energy to tell the cardiologist during this visit.  Plenty of things I wish I’d done differently.  I wish I had time to process through all of that, but like I explained in my previous post, the processing doesn’t typically happen when I’m in survival mode.  I just have to move on to the next thing and keep going.  Ditch the docs who don’t believe and get help from those who do (because they are ultimately the only ones who are going to be helpful anyways).

If mental/emotional energy exists for me to write a post about what I think caused this doctor to conclude I was primarily suffering a mental health issue, I’ll write it out.  I also want to write out what I would have done differently and what I wish I would have told him if he still believed it was in my head.

In the end, I wish he had not mentioned the mental health stuff, but I did still appreciate his honesty.  Better to know a doc thinks you’re mental on the front end that to see him several times before realizing he thinks he’s got this inside scoop on your mental health and now you’re surprised.  If he feels that way, then he can’t help me and I probably should not waste my precious energy resources on trying to convince him otherwise.