Wednesday, March 18, 2015


Over a year has passed since I initially became sick.  No diagnosis yet. I am sleeping 12-14 hours a day to get maybe 4 hours of activity which includes a lot of sitting down, walking with a cane or shopping in my wheelchair.  I noticed that I had a sliver that turned into a freckle on my finger tip, Nurse Practitioner told me to make an appointment if it got bigger, then I noticed when I removed my nail polish that the same splinter like marks are under one of my nails.  So I looked it up on google.  Now before anyone *eye rolls*. Let me assure you that as a medical advocate, I know the difference between reliable and unreliable web resources, I also own medical textbooks with which I cross reference my Internet findings.  The markings are identical to splinter hemorrhagesas sign of severe cardiovascular disease, unless you have received trauma to that area recently, which I have not.  Now, had I not been experiencing extreme fatigue, tremors, weakness, shortness of breath, chest pain, among many other symptoms for over a year I simply would have shrugged it off, however taking into account that I have no diagnosis and we have not investigated my cardiovascular system as a possible culprit, I decided that it would be important to show these markings to my Nurse practitioner as quickly as possible.

This is what happened:  I didn't get her, I got a student. Who promptly told me my red rash was not a concern.  "What red rash?" I asked him.  I pointed to the "slivers" under my nail, which I had already told him was my concern.  "We look for infection, or strange growth, these are fine." he told me in a very patronizing way.  He gave me the same neuro exam I get every time, listens to me breath a briefly listens to my heart, asks about my chest pains. I explain them to him.  He takes my blood pressure and says it is good (this is important to note for later). Here's the deal, we are both bias.  I am bias in that I have been dealing with the medical system for 8 years as both patient and patient
advocate.  I have watched many a Dr and nurse overlook things out of being too busy, too
inexperienced, too arrogant or all three.  I have watched life threatening complications arise from these mistakes, the good nurses and doctors recognize explain and apologize for their oversights.  Some lack the ability to realize that there was
an oversight, or the strength of character to admit it.  This student has dealt with patients who no doubt have freaked themselves out by going to numerous healthboards and other unreliable sources of information, he wants to help people with real health problems not waste time on ones prediagnosed by Wikipedia.  I knew this by his patronizing manner.  I would not be an active participant in this medical appointment, he would push on me what he thought, he would report to my nurse Practioner how the slivers were fine as they did not look cancerous or infected.  So it went, the stress question, then the stress comment, the anxiety questions, I assure him, I know what anxiety is, I have had anxiety.  I'm not suffering from an anxiety disorder right now.  "But your symptoms can be caused by anxiety."  He insists "I want you to have a psych consult." He tells me.  Then he wants to up my fibromyalgia meds which are mild anti
depressants.  "No." I tell him. "I get really sick when you guys up or change my meds, cymbal ta is working on my pain right now with very little to no side effects.  I am not upping it."  Then he
assures me in a once again patronizing tone.  "There is always an adjustment period when starting new meds."  This is when I began to get angry. "I dropped 2 dress sizes in a week last time. I'm already sick, I'm not doing that again." "Your choice" he tells me shaking his head.  This student is talking down to me, ignoring my observations of my emotional/mental state and he doesn't even understand the use of basic body language and it's effect on communication between caregiver and patient.  He left to talk to the nurse and I started to cry, out of pure frustration.  I don't want to be sick I am sick of being sick.  I'm missing out on important things with my children. This is the first non-vague symptom I get, and I can't even tell him what I think it is or why because all it will do is reinforce his diagnosis of general anxiety disorder.  He came back with a questionaire for GeneralAnxiety Disorder,  which is like 9 questions.  Really?!? That's all it takes to diagnose GAD?  Plus the questionnaire leaves no room for disease symptoms, as if the only reason I could be possibly
be irritable would be anxiety, not the fact that my legs are sore and I am unexplainably exhausted, not hiding to stay in bed but actually diagnosed by my sleep specialist as truly fatigued.  Then he wants
to put me on a larazapan type anti anxiety med.  "It makes me lethargic." I told him. "I spend too much time in bed as is. I'm not taking those."
"But it will help with your anxiety."
*face palm*
Finally he asked me what I am worried about.  I explained that my symptoms are worse, that I need a wheelchair to grocery shop because I get so tired, dizzy and my knees give out.  I'm worried that there is something wrong with my heart, with the way my blood moves, I'm worried that I am sick and we are not looking at all the possibilities and I am missing out on time with my family.  I don't want to be sick.  I want to get better. Then we went back over how tired I am, Scott mentioned my iron was low, then the student said he would put together some blood work to look at that, he left, spoke with my nurse Practioner and had ordered an ECG, a mobile ECG for a few days a cbc, a test
for diabetes and a few others.  I agreed to the psych consult to prove once and for all I do not have an anxiety disorder, so that we can move on to my real diagnosis. An hour and a half, that is how long that took.

He was so sure that I had anxiety he overlooked the proof that I do not have it:  My blood pressure was normal. Let's take a look at this situation from the view of a caregiver who has read my notes.  History of sexual and physical abuse by men in positions of authority.  Trauma caused by male doctor cutting into genitals without pharmaceutical pain relief, a preference to female caregivers.  She arrives to see that instead of her nurse she has  a male she barely knows,  he is examining her,  touching her  and her  blood pressure is fine.  Her heart rate is fine.  Someone who is suffering from GAD with my background would have a rush of epinephrine in a situation like that, her bp and heart
rate would jump considerably, as cymbalta is not a beta blocker.  While I was putting on my boots my
nurse practitioner came out, part of me wanted to show her my finger nail and talk to her about it, but not her part of me thought; What's the point? Here's what I learned, if they are going to treat me like I'm  crazy anyways, I might as well just tell them what think it is right away rather than waste so
much time.

Monday, November 24, 2014

Nothing a Little Pat on the Head Can't Cure.

MRI clear.  Should be jumping for joy right?  So why didn't I feel awesome hearing that?  Because we can't treat without answers, because thank goodness I don't have a tumor, but it doesn't mean that I am suddenly healthy or the dis-ease is going to just disappear because a photograph of my brain says it's not hiding there.  I'm getting frustrated.  I started feeling sick last January.  It's been almost a year and no diagnosis fits and I am only getting worse.  I got an appointment with a neurologist, who basically told me when I walked through the door, that he read my file, he's sure that I'm fine, he's usually right about these things.  Way to be objective Dr...  He asked me to list what was wrong after each symptom he interrupted me to tell me why or how that symptom could be "nothing".  I mentioned a family member who had developed involuntary movement then he diagnosed said family member right then and there (never having seen them or their tests and taking the description from a non-medical professional)  having a benign "tic" then told me that must be what I have because it runs in the family.  WHAT?!?  Worst part?  I went to see him on one of the best days I've had in months.  I told him that, that my symptoms were minimal, he jokes "Look, just having an appointment with me healed you" HAR fucking HAR buddy, may your jest keep me in light spirits while I miss yet another of my children's birthday parties because I'm in so much pain I'm bed ridden for the afternoon.  He was so busy interrupting me and telling me how fine I am that I didn't even get to tell him all of my symptoms.  His examination?  The same one my Nurse Practitioner did except he listened to my eye balls and he skipped a few things she did.  Then he goes on to talk about how surprised and impressed he was with her knowledge of examining for neurological disorders, I told him that Nurse practitioners can do almost the same amount of things that a GP can except they can't prescribe certain narcotics, but every other drug they can.  I said they simply refer patients when something is beyond their scope. The he says "Well if little Johnny has an ear infection, I guess they can just send him to the specialist." He also kept referring to sending my sleep specialist, Dr so and so, my new prescription. I told him that he needed to send it to My Nurse Practitioner. "Yeah, Yeah" he says, "I'll make sure she gets copies, So Dr. So and So will take you off that prescription and put you on this prescription okay?"  Me: "No, he will not, my Nurse Practitioner will, I will see her sooner." Him incredulous: "They can prescribe medication?" I wanted to bang my head off his desk.  I had just told him of the NP's experience and that they have to go back to university, however, he's made an assumption and he's usually right.  Ahem, but if you are the "expert" and people don't/can't go any further up then you then of course you are going to be right, there's no one to check it out and tell you you were wrong.  By the end of it he tells me it's probably stress.  I tell him no, I've lowered my stress levels and I'm feeling great emotionally.  So then he asks me if I've ever suffered from anxiety. I said yes in my early 20's for a year and for six months after my daughter was born.  Then he tilts his head and does that hand motion, you know the one that says: "Well, that's normal." At which point I had to tell him that it was by no means normal, it was extreme.  However, I was not feeling very stressed at the moment, I quit my stressful job and was enjoying my volunteer work.  My good days and bad days do not co-inside with times of low stress or high stress.  At the end of it all he tells me this: Your MRI is fine, it's just familial benign tremors, you need more iron, take it at night with vitamin C (the only new thing he taught me was to take the iron at night, I had been taking it in the morning) don't eat processed crap (anyone who knows our family knows I make almost all of our food from scratch and use honey and maple syrup in place of refined sugar) and get this: EXERCISE VIGOROUSLY.  He knows that I have fibromyalgia, tremors that cause my legs to give out from under me, dizziness and blackouts and he wants me to VIGOROUSLY EXERCISE.  Is he trying to kill me? Then he says he's going to get me an EKG or ECG or both for my heart, but he's sure that is fine too.  Oh great, if you're sure. "You're Fine" he smiles at me as we leave the exam room.  I can't walk without a cane because my tremors cause me to fall, my involuntary movements are so abrupt that they wake me in the night,  I have pissed my own bed, I have collapsed in the shower because I could not control my all over body shaking and 1 hour out in the cold leaves me bed ridden in pain for days. Yeah I'm in peak physical condition buddy.  In the end I felt like I got a pat on the head and should have been waiting for my lollipop at reception.  Speaking of reception, his receptionist was rude, not just then but when she called to book an appointment as well.  Needless to say I will be asking for a second opinion.  But I did get to see my mother and that made the trip to Toronto through the blizzard worthwhile.

Wednesday, November 5, 2014


So here's an update, it's been a while, as there has been much emotional turmoil over the last couple of months and I did not want to stir the pot because I was still really upset.  We have lost the support of some of Scott's family during my illness.  There have been accusations that I am only with him because I need his money to support me while I'm sick.  I am no longer hurt by these accusations because I know that they are coming from a place of negativity and fear and not reality.  My family has rallied around us, my mother drives from Mississauga to give us a hand or to watch the kiddos during my tests, Scott's father and step mother as well as uncle remain supportive and offer to watch the children for last-minute appointments and hospital visits. My sister, whom I had a falling out with a few years ago, called and has become a great listener and supporter during this time.   People are contacting me and Scott to offer any support they can, I find myself overwhelmed and tear-full at their generosity and genuine care.  Someone offered to exchange their MRI appointment with mine so that I could get mine sooner, it wasn't possible, but just the fact that she was willing to do that shows me the beauty and kindness that exists in this world.

The reality is this, I have developed tremors.  My tremors are the worst in my knees, they get so bad at times that I cannot walk, my cane barely holds me up.  I can no longer shower (even with assistance) because the tremor takes over my whole body, I lose the ability to control the majority of my muscles and I collapse.  I have begun to have involuntary movements or tics.  From small eye twitches to full out leg kicks. I am losing control of my body, quickly.

I went into the nurse practitioner's office and she called and pushed for a sooner MRI.  I went to the sleep specialist and he agreed an MRI must be moved up and promised to get me a closer appointment with a neurologist (mine was set for April).  So within 5 hours, between the two of them, I got an MRI the next morning and they are getting me an appointment with a Toronto neurologist.  For which I am grateful really, but knowing that I should be feeling relief, I'm feeling fear.  Things didn't seem so worrisome when we were taking our time, just checking things out.  Now we are rushing, there's this feeling of there not being enough time.

During my appointment with my RNP, she asked me: "What are your main concerns?"  I told her what I had told Scott while crying in his arms a few nights before: "I am scared that I am going to lose my ability to walk, already I am having a hard time.  The winter will come and  I will be stuck in the house, I have stairs up to my front door and a hill that will be impossible for me to get down.  I'm losing my freedom."

You see, I always thought that you lose what you take for granted, that it was the karma or the lesson that you were meant to learn in that life.  I felt so cheated, so angry because it wasn't fair. I never took walking for granted, I LOVE walking, running and swimming.  I didn't get my licence and I was happy to walk everywhere.  People would ask me which part of my body I liked best and I always said "My legs, they take me where ever I need to go."  I don't need this to be taken away to learn to cherish it, I already do.  I see now that I had programmed myself to believe in this pattern, I have forgotten that God/Universe works in mysterious ways that to my little human mind will still be perceived as chaos.

Yesterday they messed-up and I had to go in twice for the MRI, which is fine, mistakes happen.  We got to stop by Micheals and grab Solstice craft stuff, so no complaints there.  The Radiologist said they would get the info to my nurse practitioner today.  So now I get a horrible rush of butterflies every time the phone rings. I usually rely on my positive thinking to get me through times like this.  But here's the deal, if they find nothing it means that they don't know what's wrong and we can't start treating it.  If they find something, that means
there is something wrong...with my brain.  It's kind of a sensitive organ to be messing around with, being that it controls ummm.....everything.

So though I'm not necessarily believing in the idea of direct karma anymore, I still believe that every life experience has a lesson.  My current lesson is this: Learning to just let the future be.  I do not need to manipulate my emotions by thinking either negatively or positively about a possible outcome.  I shall feel what I feel when I feel it and be okay with that and let it pass.

Thanks for lending me your eyes and ears. I'll keep you updated.

Wednesday, August 6, 2014

It's not you, it's me.

I use a cane when my legs feel weak, or when my joints complain when I'm putting too much weight on them.  I need to have it with me, because I never know when my legs are going to say, "Nope, not doing it anymore."  I talked about the freedom the cane gives me, it gives me a feeling that I can be okay, I will not be stranded in the supermarket or downtown should my legs become ornery bastards.

There's a draw back though, people see me and they want to know what happened.  "What did you do to yourself?" they ask. "Did you hurt yourself?"

Before this goes any farther, I know they mean well.  I know they are concerned about me. I know they are coming from a place of love. Which is why I feel like a dick writing this, but these are my feelings at the time that they ask:

Them:"Oh my God, Is that a cane?  Are you okay?"

Me in my head: Smile Amber, Don't look tired. Be positive.

Me outloud: "Yep it is, I'm fine though."

Me in my head: Please don't ask anything else. keep smiling Amber, oh wait, does my smile look unnatural? Crap my leg is starting to hurt. Damn the meat section! It's always so cold here.

Them: "But you have a cane!"

Me in my head: They are going to make me explain, my legs hurt, I need to finnish shopping, oh god they look so concerned.  Why is it that I'm great if people are apathetic, but when they show general concern I feel all weepy.  Don't cry in the super market Amber, they might hug you and that would be the dam breaker. Smile.

Me outloud: "Yep, it's hard to walk sometimes.  But the cane helps out, I bought it at the antique store."

Me in my head: Please don't ask what's wrong, because I'm not sure what is wrong, I know what theory we are working on at the moment but I feel like a fraud because there's so many other things we are looking at.  I don't want to say we don't know yet, because that sounds so pathetically dramamtic.  They are bound to ask more questions about my symptoms, my tests (insert images of tests and proceadures, nurse and dr.'s offices, bad mornings etc).  Shit they are tilting their heads, not the empathetic head tilt, you guys are killing me here. Switch cane arms, this one hurts.

Them: "What's wrong though?"

Me in my head: Shit.

Me outloud: "It's looking like fibromyalgia."

Them: Gasp, Oh no!

Me in my head: SMILE.  Explain that everthing is fine, you know lot's of people who have it, it's just about finding balance, taking breaks when you need it. Don't look scared, don't look upset and don't look like you are trying hard to look happy.  Don't mention that it may be something else, you'll just have to explain that too. My legs are really beginning to ache now, I have to get moving, would it be rude to cut off the conversation right now?  They are asking because they care but I'm tired and I feel so drained talking about this.

Me outloud:  "It's okay, really.  I have met other people who have it, they lead relitively normal lives, it's just about learning to read my body, to take a rest when I need to."

Them:  "Oh, is it just in your joints?"

Me in my head: (immediate full body and memory scan of where and how it hurts) I feel fuzzy, crap I don't even know how to put this into words.  

Me outloud: "Ummmm, sometimes in my joints. It's really kind of everywhere. (that sounds aweful, not looking for sympathy, really) My skin sometimes hurts... like I'm bruised, and my muscles, they  ummm get...achey, tired sort of." (I'm having a hard time finding words again, I'm getting tired, get out of this conversation before your stutter, Amber.  It's so embarassing how they look at you when you stutter)

Them: "Oh, I'm sorry to hear that you are going through this."

Me in my head: I know you are, thank you for caring.  My throat is tightening, Smile and be positive.

Me outloud: "Thanks, but it's really not that bad.  I'll be fine. (smile). I'd better get shopping now."

Just to let you all know, again, I know that everyone who is asking me this is doing it out of love and concern for me.  But it doesn't change the reality of it for me.  Over the internet or facebook messages is easy for me, no one sees my face or hears my voice, I can answer at my leisure.  There is no pretending and I can cry if I feel the need, in the privacy of my own home.

Yesterday was a bad day for me.  I was exhausted, in more pain then usual and struggling with medical choices and possibilites.  Stress makes it harder to cope with the pain, the fatigue makes it harder for me to form sentences.  The more I stutter, repeat and start over my sentences the sadder I feel about the loss of my communication skills.  I used to pride myself on my communication skills, well we all know what happens before a fall, don't we?  Yesterday, a friend approached me and asked me about my cane.  She is a good person, we've had many a personal conversation.  I, however, was tired and weepy. So I just turned to her and said exactly what was on my mind, rather than drain myself with a conversation that I simply did not have the energy to keep myself positive for: "I don't want to talk about it right now."

She looked hurt.  I didn't mean to hurt her feelings if I did.  But part of learning to take care of myself, is learning to say "No."  I was making myself feel obligated to do something that is draining for me.  I am a grown woman, who needs to make choices that are best for her, I can't let the thought of someone else getting their feelings hurt, stop me from taking care of myself.  Eventually, I won't feel guilty about that.

I love my friends and family, I know they want to show their support.  I feel loved and supported.  But if I seem aloof when you ask me questions in person, it's because it's painful and draining to talk about and frankly I don't know the answers.  I hate showing emotion in public (other than cheerfullness), and somedays I am hanging on by a thread.  Everyone wants to know how they can help, sending me messages is awesome, reading my blog to understand what is going on is great. Prayers are welcome. Perhaps, if you see me in the super market, you could just smile and act as if the cane isn't there, because normality is one of the greatest gifts I could recieve at the moment.

Tuesday, August 5, 2014

Big Girl Panties

I went for my follow up for the sleep study expecting to be pressured into purchasing an oxygen machine for apnea.  I even practised in my head how I would tell him that I was going to  take stress reduction courses before I purchased one to see if that would help. That is not what happened at all.

According to my sleep study, my sleep was good, I had REM when I was suppose to, deep sleep when I was suppose to,  I slept for a great amount of time, I moved my legs around quite a bit (but that probably has something to do with my pain) and I had very mild apnea otherwise he said I had a great night of sleep. The day tests however were concerning, day tests mean you get up for an hour and a half then sleep for 20-30 minutes, rinse repeat 3 more times, apparently I fell asleep in less than 5 mins or so each time and stayed asleep until woken.  That is very rare, especially in someone who recieved a good night's sleep.  The Dr. thinks that there must be something wrong in order for me to be that tired, he noted my extremely low iron and that, that may cause some of it.  I talked to him about prolactin levels at night being higher and that I have begun lactating, does that mean anything to him as a sleep expert?  He said "yes, it does." Turns out he was one of the main researchers that discovered that prolactin levels were higher at night (this is cool to someone who gives breastfeeding support).  As such, he said he wanted to be the one to test for my prolactin levels, at night.  He is concerned that the problem is in my brain, he asked if they have set me up for an MRI, I said "No."  He said that he believed that the problem is central, that he will go for the more invasive proceadure if it means getting the answers sooner. He dictated a letter to my NP stating that he wanted to do a night-long prolactin level test, that he recomends that I go see an endocrinologist asap, and suggested an MRI.  I'm pretty sure I know what he is talking about, he's concerned I may have a tumour on my pituitary gland, these tumours can grow and shrink and release hormones like prolactin.  They can also put pressure on other parts of my brain and cause other symptoms that are not hormone related. These tumours respond well to oral medication and rarely need surgery or radiation treatment.  He was vague though, in his explanation, which could have something to do with my kiddos who were sitting on the floor doing word searches.

Never walk in to a Dr.s office expecting something, it's like a slap in the face when it's not what you think it is.

Today is the day that I have to call and make my ultrasound and mamagram appointments and I'm really not feeling it.  I feel like once I commit to these tests I am admitting that this may be more than low iron and a pain disorder.  I don't want to do that.  I don't want to make the calls alone.  I want to be strong, it's easier to look strong and to sound strong when there is someone in the room watching me.  My children make me strong, Scott makes me strong, I want to be positive for them.  I'm so tired I'm finding it hard to be positive just for myself.

Truth of it is, it's time to put on my big girl panties. I don't even know if there is a tumour. I recognize that it is good to admit that I have fears and to not supress them. It's okay to admit that, yes, I'm tired. I know it's time to get this stuff done.  Knowing that you are reading this is another way I stay strong, you are my witnesses, I find positive things to think and write because of you, I look for lessons so that I can pass them on, so that this whole experience isn't for nothing.  So, thank you for being my sounding board, my support and my friends.

Wednesday, July 30, 2014

HOUSE MD, Hospital Vacations and Southern Vampire Novels.

Remember how I was looking forward to there being no more appointments after my sleep study? I forgot about follow-up, but that's no biggie.  I was beginning to think that we've got all this figured out... Until I watched House.  Never watch House when you are experiencing symptoms and waiting on a disease diagnosis.
This show is evil, and awesome and evil.
So anyways, Last month my breasts were swollen and very painful, this month too, it felt as sensitive as when I was pregnant, but I thought, hey fibromyalgia makes stuff hurt so... why not my boobs? I didn't even consider telling my NP at our appointment because I figured it's just another symptom of Fibromyalgia.  So this is when House comes in to the picture. Watching House when you are not feeling well is worse then googling your symptoms, you will have convinced yourself by the end of the show that you either have lupus, sarcoidosis or complete liver failure and that you will begin to vomit blood any minute.  So anyways, There was a show where Dr. House mentions a man having a high prolactin level.  Then I remembered prolactin headaches (I've been having some whopper headaches) then I remembered that my breasts had been tender and swollen. I decided to try some hand expression and low and behold I am lactating.  Yep, I am lactating.  Not a lot, just a few drops.  So the next morning I sent Scott out for pregnancy tests (which is a long shot considering that I had a tubal ligation) both negative.  The next day I stop in at the NP office, and they squeeze me in that afternoon because my sleep study is that night and all of the next day.  Long story short I could only produce a drop or two for the nurse, (it's a bit nerve racking having someone stare at your nipple while you squeeze your breast) not enough to test.  So blood work for prolactin levels and pregnancy as well as a mammogram and ultrasound coming up.   The idea of a mammogram scares me, they look very painful.  She assured me that it is probably nothing to be worried about, that I had no lumps but it would be a good idea to see what is going on in my breasts.  From there we went home for 20 minutes then packed and headed to the sleep study.

Scott and I had a heart to heart on the way there, it was just over an hour drive.  It's hard to take care of someone in pain. He's had to take on more of the house work and deal with my mood swings.  I'm not bringing in very much money because I'm not working a steady job at the moment so he is supporting us more financially then before.  His anxiety has increased, our arguments have increased.  However, our ability to talk about them afterwards has also increased. We have more compassion for eachother's circumstances, we forgive quickly.  At the end of the day in which we have argued, I can take his hands in mine and say: "We've both had a rough day."  We are able find solace in holding eachother realizing that this situation is not easy for either of us, and that we are still learning. 

So, I was nervous when we got to the hospital.  I'm always nervous around hospitals.  We were lead into our private room that had two adjustable hospital beds, a sink, a lamp and a chair.  The first thing I thought about was bed bugs.  With so many people sleeping here, how do they guarantee no bed bugs?  I realized that I had to let go of that creepy thought, there was nothing I could do about anyways.  I filled out a questionaire about medications and emotional significance.  Scott brought his guitar, I brought a novel by Charlaine Harris, something I had already read so it would be easier to put down when it was time to sleep. Scott and I cuddled up together in one of the tiny beds and he read a poetry book while I read my smutty vampire mystery.  It was explained that I was to go to sleep when I normally would, I wouldn't be disturbed unless they needed to adjust some sensors, then I would be woken at 7am. and sleep for 20-30 minute intervals over then next 5 hours.
Scott had apparently forgotten to call ahead and ask the beds what they were wearing:
How Embarassing

So I had also gotten my idea of what a sleep study looked like from House. What a sleep study looks like on House :

This is what is really looks like:

It took an hour to get "The Full Montage" as our tech Jim called it.  Obviously we laughing and having a good time.  I try to find humour in situations that usually would make me anxious.  My nervousness only slipped in right as they showed me the nose tube, but I breathed and smiled and said my nose felt tickly. At least I didn't need and iv.  At bedtime I fell asleep easily but had a hard time staying asleep, new sounds and such. The wires didn't bother me as much as I thought they would.  In the middle of the night some strange dude opened the door and said "Sorry." and left.  Apparently he wasn't in the sleep study, he got in through a door that was suppose to be locked and was wondering around the hospital looking for the er. That was a little creepy.

The next day they woke me at 7am, I was irritable, dazed and stiff.  I read my book, ate veggies for breakfast, Scott got me decaf coffee and then I was told to go to sleep for 20 minutes.  I kind of slept.  Then the same thing again, and again, then lunch.  I stumbled down to the cafeteria with Scott.  My brain was so fuzzy I couldn't order or think straight.  I had the perogies, not bad.  Then one more "nap time." And we were done.  Tooks, one of our techs mentioned that we should enjoy our "hospital vacation".  You know what? I kind of did.  There were no dishes, no having to tell the kids to do things, no reminders of things I had put off. There was something very relaxing about that, even if I was covered in wires and sleepy as sh*t.

The thing is that they attached the sensors to my head with sticky conductive stuff that dries hard and gets stuck in hair.  They have a shower there to try to get it out, but my fibromyalgia makes showering very painful to me, so that was out of the question.  I told "Tooks" that I was just going to cover my hair with a scarf and go to Walmart (the only place with a hair salon that you don't need an appointment for) then get it washed out.  She says to me, "No, no you just wait.  I'll get some rubbing alcohol and try to get out as much as I can before you leave."  She came back with rubbing alcohol and guaze pads and scrubbed every part of my head that had a sensor on it (I believe there were 24).  It was painful, but she was trying so hard to be helpful.  At the end, I told her thank you and now the hairdressers would have a much easier time at Walmart.  Then she's like: "Oh, you are not going shopping there?"  "No." Then she started to laugh. "I was trying to get this out because I thought you were going shopping with your hair like that and I was thinking I couldn't let you do that."  Tooks has an infectious laugh. 
My hair after Tooks cleaned it with rubbing alcohol:
I am facing the camera
We ate a pretty good meal at a blue restaraunt on the Bay, then headed to Micheals on Main for Scott's gig with Jamie Oppenheimer.  I was pretty tired when I got home.  But not too tired to read the last chapter of my Sookie Stackhouse book.  Since I came home, I have reminded myself to find that space again, that feeling I had on my "hospital vacation".  I don't have to feel pressure of things to be done, simply acknowledge that they need to be done, but not right now and let it go.  That or actually do them of course. The sleep study was meant to be a diagnosic proceadure, but it ended up being both healing and educational. It reminded me that there is such a thing as peace, to get things done as they need to be done and leave it be until that time.  

Friday, July 18, 2014


So it's not Lupus or Autoimmune! Blood work came back looking good, my iron is up, not where it should be but definitely an improvement.  We discussed treatment for fibromylagia, a low dose of a specific anti-depressant shown to reduce the pain of fibromyalgia signifcantly, gentle exercise and a chronic pain course.  We are testing for lymes disease as well, based on a very severe reaction my body had to what looked like a bug bite a few years ago.  My sleep study will be on the 28th then if everything goes well with the blood test and sleep study I should be appointment-free for a month :).

I remember wishing it wasn't fibromyalgia, because there is still so little known about it, and it flares up so suddenly, but after hearing that my symptoms may be from an autoimmune disorder...well I breathed a sigh of relief when my nurse said that it was looking like fibromyalgia was the culprit. At least with fibromyalgia you know the pain isn't signifying injury or sickness, with autoimmune, you are acutely aware that your own immune system is attacking your organs.  Pain sucks, but pain with fear is much worse.

I have more hope now.  Now I have a plan.  The medication is suppose to take 4-6 weeks to really work, just in time for my online courses to start.  I was getting scared to commit to anything, and there's still going to be things that I can't commit to for another month or so just in case I  have a "bad" pain day.  I'm also going to have to learn to say "No." to more things in the future so that I don't stress myself out and cause another flare-up.

Thanks to everyone who has offered me help, massages, an ear to listen or eyes to read.  I still may need to call upon you while I wait for the treatment to kick-in.