Tilt Table Test

So you’ve been referred to Hamilton for a Tilt Table Test? Be prepared to wait!

Wait .. and Hurry Up. As far as I know, they have the only Tilt Table in the province, so it’s a long wait. It took a year for them to call me with an appointment, and when they did, it was with only a week’s notice.

On the Day of the Test, Wait Some More. The email advised arriving 30 minutes early. Upon arrival, I was promptly given an ECG and ushered to a waiting room. It was before 11:30 when I arrived in the TTT waiting room for my 12pm appointment. When I finally checked with the receptionist to see  if they had forgotten about me, I was informed that they were on lunch. I settled in for the long haul.

(Don’t ask me why they booked my appointment for their lunch hour.)

Test Prep. Hours later, the nurses came and prepped me for the test. Dressed in a hospital gown, I lay down on the bed. They put a strap around my legs, another around my waist. These would hold me to the bed when they tilted it upright. They put in an IV lock so that they could take blood during the test. They put a blood pressure cuff above the IV. Onto the other arm was strapped another blood pressure machine… this one was strapped on, because it was quite heavy. It was attached to a cuff through which the nurse pulled my hand and fingers. It would take its readings from the fingers.

Get a Baseline Reading… And Wait.  The blood pressure monitors do their thing for a few minutes while supine (lying down), getting a baseline reading with which to compare the orthostatic (standing) results. After getting the baseline, we waited for the doctor for quite some time.

Consent. When it became clear that he wasn’t coming, the nurses called for another doctor to take my consent. He explains the procedure: they will tilt the bed up and monitor me until I pass out. If 15 minutes goes by and I haven’t had symptoms, they will give me some nitroglycerin to induce symptoms, and then continue monitoring for another 15 minutes. If my heart stops, they will restart it. This is a very rare occurence.

The Test. The bed is tilted up. It’s kind of a groovy feeling in the stomach, a little nausea-inducing. And then I am standing, but not holding up much of my own body weight. The straps are doing most of the work, and all I have to do is hold my legs and hold up my head. After 30 seconds or so, this feels uncomfortable. I am taking deep breaths, trying to calm down. I don’t feel good. I’m very tired. But I don’t say anything yet… this is what I’m here for, after all. I want them to get a good reading. I can feel the blood pooling in my hands, my abdomen. They are swelling up. They are starting to hurt, they are so full, surely they must be about to burst. I am feeling nauseous now. I am struggling for breath. “I don’t feel well,” I tell the nurses. My head lolls forward, I give up on trying to hold it up.  I hear the Velcro straps pulling as I lose control in my legs. I wonder dimly if I am going to fall out of the straps when I pass out. The world fades to black.

After the Test. The test only lasted 5 minutes. They bed is tilted back again. They raise my legs. I still feel like I am going to vomit. I am gagging, and they bring me a tray. begin to feel myself coming back to normal.

Recommendations: Don’t Stand Up. Drink Water, Eat Salt. I lasted 3 minutes in an upright position before passing out. My heart rate and blood pressure tanked as I fainted, they tell me. I am told not to stand up — to sit or lay down when I feel symptomatic, to  drink a lot of water, and eat a lot of salt. Ha! Thanks, Doc, never heard that particular bit of advice before.

Go Home and Wait. The results will be sent to my doctor, and I am being referred to a specialist in Toronto.

Of course I know that I can’t stand up, and this really has told us nothing new. It has now been objectively clarified that I have only 3 minutes to stand. Within 30 seconds of standing, my body is sending me signals that I need to get down. If I resist the signals, they grow stronger and less tolerable until I pass out. I have thirty seconds of feeling good, then a few minutes of feeling horrible, nauseous, and unable to catch my breath before I fall. Thanks for the assessment, good to know. Funny, isn’t that what I already told them?

 

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How long Lord, how long?

Our joy is in Christ, it is not reliant on external circumstances.
Sure, I know. But it doesn’t help me, lying on my kitchen floor, head throbbing, room spinning. Where is God? How long, Lord, how long?

The last few weeks, I have been in a fair amount of pain, and it’s been keeping me up at nights. I am waking up about once every hour.

I know this, because every time I wake up I check the time on my computer, put on a  30-minute podcast to distract me (Revive our Hearts radio) and then I fall back asleep.

This cycle continues until morning.

How does one get along without proper sleep for weeks? Not very well. I have been tired, cranky, and just dragging myself around. Of course, with chronic illness, this state of affairs is so normal that it just seems like more of the same. More bad days, fewer good days.

But I have been holding onto some hope. A certain specialist I was referred to by the geneticist who diagnosed my EDS. I have really been looking forward to that appointment.

When I met with him on Tuesday, he was dismissive. And I was devastated.

These doctors are not going to help me. No one is going to help me. I am so utterly lost in this illness with its complex set of symptoms, the pain and the dysfunction. How can I live this life? It is horrible. And as soon as I get one symptom under control, it seems that I am hit with something far, far worse.

I spent the day yesterday alternating between doing school and crying.

I cried out to the Lord. I am angry with Him. I know that He gives us suffering to bring us closer to Him. I have been leaning on Him. I have been praying like never before, drawing close in my distress and discomfort. Praying for myself and for others.

But last night, I felt utterly abandoned.

Through the past year, I have largely been able to maintain a positive outlook. My emotional breakdowns have been few and far between. I have suffered through being bed-bound with POTS without really complaining that much. I looked at the bright side; at least I wasn’t in any pain. Ha!

Even after this pain started, I took it in stride, knowing that my life is almost perfect in every respect except health.

I have been blessed with so much: a wonderful, loving husband, beautiful, amazing children, a lovely home, everything we have ever wanted. It is only my health that keeps my life from being perfect. I know that I cannot have everything. So what is health, when everything else is perfect?

I have maintained my trust in Him throughout.

After all, it had taken me ten years after the initial onset of symptoms, just to get a diagnosis. Ten years of fatigue, dizziness, neurological issues, just generally feeling unwell. Ten years of wondering if I was just lazy, less competent than other people. Having a diagnosis was a relief in so many ways. So I could barely get out of bed. At least I had a nameable condition that the doctors could objectively diagnose. That was better than dragging myself around while I slowly felt worse and worse, got more and more worn out, being told it was just normal pregnancy, or normal mothering that was making me so tired. My life in the past year hasn’t really been that much harder than it had been for a long time.

But chronic pain is something worse. It makes it hard to enjoy my day with my children. And almost impossible to sleep. I am just dragging myself through life, and I don’t see how I can possibly keep it up. But I have to, because what is the alternative? Giving up? I can’t do that. I have too much to accomplish, too much at stake. I have children and a husband depending upon me.

So I keep going, even though I am much less of a mother than I want to be. And I cry out to God to help me, because He MUST help me. Surely this is not His plan for my children — to have a cranky, subpar mother who is just dragging herself around all day.

Just how far down this road of ill-health does He expect me to travel?

I hesitate to hit “Post” on this message. It is so very raw. But I posted when I was finding meaning in my suffering, so I feel it necessary to post when I am not finding meaning in my suffering.Otherwise, there is just no truth here.

Suffering is hard. And sometimes, even when we know all the words of comfort within the soundest of doctrine — even when we believe in that doctrine with all our hearts — it somehow, rings hollow.

As an example: My glasses bother my eyes when I have a migraine. So I keep taking them off and leaving them in nonhabitual places. And then, of course, I can’t see to find them, so I wander around the house looking for them on every surface. After one or two circuits, I have expended all my energy and I have to collapse — if I am in the living room when I run out of energy, I collapse on the couch, but if I am in the kitchen when it happens there is nothing for it but the kitchen floor. I don’t hurt myself — I am familiar with the signs and I get myself safely down before I faint. And there I lay until gravity allows my weak blood pressure to get the blood back to my head. It only takes a few minutes. It’s a small problem — but right now, in the midst of everything, it feels unfair.

“Nobody said life was fair.”

“There are always others who are worse off.”

“God is in charge.”

“There is a meaning in suffering.”

“God won’t give you more than you can bear.”

“Focus on  the good.”

“Give thanks in all things — for the bad as well as for the good.”

“Our joy is in Christ, it is not reliant on external circumstances.”

Sure, I know. But it doesn’t help me, lying on my kitchen floor, head throbbing, room spinning.  Where is God? How long, Lord, how long?

Lord, do not rebuke me in your anger or discipline me in your wrath. Have mercy on me, Lord, for I am faint; heal me Lord, for my bones are in agony. My soul is in deep anguish.

How long, Lord, how long?

Turn, Lord, and deliver me. Save me because of your unfailing love.

Among the dead no one proclaims your name. Who praises you from the grave? I am worn out from my groaning. All night long I flood my bed with weeping and drench my couch with tears. My eyes grow weak with sorrow, they fail because of all my foes.

Away from me, all you who do evil, for the Lord has heard my weeping.

The Lord has heard my cry for mercy, the Lord accepts my prayer. All my enemies will be overwhelmed with shame and anguish; they will turn back and suddenly be put to shame.

Psalm 6

The Psalms really are beautiful prayers. There is always a Psalm for everything.  David  begins Psalm 6 pouring out his heart and begging for healing and mercy. It is almost despairing. But he ends knowing that the Lord has heard and accepted his prayer.

David expressed his heart fully, even in great suffering. He did not hold back or “pretend.” And that is glorifying to God, too.

Because if the faithful are to be a city on the hill, glorifying God and lighting up the way in the darkness, we need to be honest about that darkness. God will not always take away our suffering. And He will not always give us the strength to carry on with a happy heart. Sometimes He will seem to disappear, and there is nothing we can do but cry out to Him. That is the moment when we will really find our faith. When we have nothing left, nothing with which to carry on That is when we will find out what faith is.

Faith is the substance of things hoped for.

So much for prosperity gospel!

 

Are you getting better?

It was a quick, in-and-out stop. No problem, I thought. It’s just one item, I know exactly where they are in the store. I’ll be back in the car long before my autonomic system even knows I’m there. I won’t even need my walker.

Big mistake.

Please know that I am not posting this for sympathy, but just to give a picture of what this illness does.

People often ask if I am “getting better,” and I never really know what to say. I have good days and bad days, but I don’t think there is much “getting better” with a chronic illness. It’s permanent, that’s all there is to it.

I know that when I am sitting on a couch at home, it doesn’t look like there is much wrong with me. So people assume that I am “getting better.” Really, it just means that sitting on a couch is within my realm of ability.

On a good day — meaning a day which is not in the middle of a POTS flare, or of a migraine flare;  a day which is not too humid, a day on which I haven’t overexerted either in the morning or on the few days previous — I can manage quite well, within the limited sphere of my “new normal” life.

This life is carefully constructed to minimize standing, raising my arms, or having to sit in a hard-backed chair. These are activities which leave my autonomic system unable to cope, and inevitably end in headaches, vertigo, syncope and exhaustion.

My kitchen is a disability-friendly zone where all of my dishes, pots and food are within easy reach.

My homeschool routines are consecutive couch-run tutoring sessions.

I know what household tasks I can do easily: cleaning the toilet, for instance, is an easy task when seated in a bath seat in front of it. Cleaning the floors is much easier to do on hands and knees than standing up with a mop. I know what I can achieve, and how best to achieve it.

I also know what activities I cannot do — laundry, shopping, and picking up toys, for instance. My husband and children are good enough to take over in these areas.

But today I did something outside of my normal routine. I went to the grocery store to pick up diapers. It was a quick, in-and-out stop. No problem, I thought. It’s just one item, I know exactly where they are. I’ll be back in the car long before my autonomic system even knows I’m there.

I was parked in the handicapped spot, right near the doors. I didn’t even bother getting my walker out of the trunk of the van. I thought it would be more trouble to lift it in and out than it would be to walk without it.

Big mistake.

I don’t use the walker around the house, so I didn’t think I would need it for a quick walk across the store. But room-to-room travel, where there is always a chair to sit on in the next room, is a completely different excursion than a walk across a big grocery store.

I was fine for the first few metres. But as I reached the doors, already panting and dizzy, and saw the sheer vastness of that benchless, seatless, respiteless wasteland, I had realized my mistake. But in for a penny, in for a pound. There was nothing for it but to continue on.

I was extremely short of breath and in terrible chest pain by the time I reached the diaper aisle — and I had to spend more for a much smaller bag of diapers, because there was no way I’d be able to carry a big box. And then there was the journey to the cash register. Thankfully, there was no lineup. I would never have made it if there had been a lineup.

As it was, I crept back to the car, stooped and faltering like a child’s over-the-top caricature of an old person’s walk. (Think Dick Van Dyke’s rendition of the bank manager in Mary Poppins).

I made it to the car, reclined my seat, and waited for my body to recover, kicking myself for venturing out without the walker.

And that bit of midmorning stupidity wrecked me for the rest of the day. I collapsed at home and did nothing but recover until bedtime.

The grocery store fail was a big reality check for me. As my husband says to me so often, “Stop trying to do what you know you can’t do!”

But when the activity in question is no more than a quick diaper run without a walker, it’s hard to believe, or admit, that I really can’t.

Again, this post is not meant to garner sympathy. There are many, many people with EDS and POTS (and other invisible disabilities) in the same, or worse, condition. Everybody has their own struggles, after all. This just happens to be mine.

But I share to raise awareness, for myself and for others with similar conditions. When you see a person who looks perfectly healthy using the handicapped parking, or when your friend with chronic health issues bails out on another activity, just give them a little grace. You have no idea what another person is battling, and we could all use a little more grace.

Diagnosis: Ehlers Danlos

Finally, I know what is causing my POTS. Zebras exist.

Many doctors are uninterested in searching for a reason for POTS. There are so many potential causes, and no doctor is going to test for all of them.

I chose four causes to ask for testing for, those that I thought were the most likely in my case: Chiari, Lupus, EDS and MCAD.

I had brought up EDS with two different cardiologists, but one told me flat out that I didn’t have it (without even performing an examination), and the other thought it wasn’t worth testing for (again without an examination) because Ehlers Danlos is so rare.

But Ehlers Danlos is not rare. It is rareconnectorg-webinar-how-to-start-an-awareness-day-for-your-rare-disease-8-638rarely diagnosed. And if doctors are unwilling to test for it, it will stay rarely diagnosed.

It is actually a very common cause of POTS, Chronic Fatigue, joint pain, and mitral valve prolapse. I had all of these issues, and I was “double-jointed.” But with two different doctors dismissing the idea, I delayed on pursuing diagnosis.

The MRI had turned out normal, meaning that there are no structural abnormalities. Chiari in EDS patients is often positional, however, so it would only show up on an upright MRI. Funny, POTS is positional, too. But good luck finding a doctor willing to pursue an upright MRI without an EDS diagnosis (or even with one!)

The autoimmune tests were inconclusive, but gave no striking reason to pursue Lupus or MCAD, according to my doctor. I started to look into Ehlers Danlos again. I found a geneticist willing to test me, and I asked my wonderful GP for a referral.

After a four-month wait for an appointment, I met with the geneticist, who diagnosed me with Ehlers Danlos. Finally, I know what is causing my POTS. Zebras exist.

The takeaway from this? Doctors are not infallible. Do your own research. And be sure that any doctor giving or denying a diagnosis is actually qualified in that area.

Let a psychologist diagnose psychological disorders, a cardiologist diagnose heart issues, and let a geneticist diagnose Ehlers Danlos.

whythezebra

#Not A Brand

With advocates like these, who needs bullies?

Invisible Disability is an identity, not a brand.

Chronic Illness Vs. Invisible Disability

An illness is something that takes over a person and sends them to bed, debilitated and dysfunctional, while they sip Cup o’ Soup and passively wait for the illness to go away. But a chronic illness, by definition, won’t go away. It is the permanence that makes it a disability.

A disability is a permanent challenge that one must learn to live with. A person with a disability is NOT a person who is dysfunctional, but one who has had to learn and adapt in varied and strategic ways to maximize their functionality.

A person with a disability lives a productive life, albeit with extra challenges than what are typically faced by the able-bodied person.

We are survivors of adversity, meeting challenges head-on on a daily basis.youdbesurprised The fact that these challenges (like walking, or standing up, or even talking and breathing at the same time) do not seem like a challenge to you does not mean that they are not real challenges. It means
that we are that much stronger, because we must battle to engage in almost every activity. Likewise, the fact that you cannot always tell by looking at us that we are fighting this battle (to stand, or to talk, or to think, or to breath) does not mean that our battle is not real, only that it is invisible.

And so many identify as having “invisible disability” rather than “chronic illness.” This phrase, coined by those who face invisible disability every day, has become our identity, an identity that we would not have chosen for ourselves, but one that we embrace as it identifies our challenge and implies our strength and our resilience.

So the fact that the Invisible Disability Association has been granted a patent and trademarked the name Invisible Disability is incredibly offensive. They are now wielding this patent in an attempt to silence us and prevent us from speaking our own identity. They have succeeded in shutting down at least one group on facebook that used the name “invisible disability” and are preventing others from using this term in materials and publications.

Advocacy is supposed to mean giving a voice to the voiceless. By prohibiting those of us who identify as having an invisible disability from using this term to identify ourselves, they are effectively silencing our voices. They are using their voice (amplified by the metaphorical megaphone of the US Patent Office) to speak over us, preventing us from speaking fuFcdkanvoFJfVLs-800x450-noPador ourselves, all the while pretending to speak for us.

With advocates like these, who needs bullies?

#notabrand


Sign the petition

But how do you homeschool all those kids with a chronic illness?

Any person with a disability must learn to function as best as they can given the limitations that they experience. God knew what He was doing when He gave us these five beautiful children, and He knew what He was doing when He put it on our hearts to homeschool them.

Our reasons for homeschooling have not changed just because I have a disability. We still believe that it is our great privilege and responsibility to educate our children to know, love and serve the Lord. Our labour thus far has produced great fruit for each child, both academically and personally, and we therefore see no need to outsource this responsibility.image

Over the past year, I have been bed-bound more often than I have been upright. I have definitely changed the way we do things, and switched some of the curriculum that we use, to better accommodate this illness. But flexibility is part of the beauty of homeschooling, and it puts us at no disadvantage. Over this difficult year, my children have continued to learn and grow and thrive.

My 9-year-old devours any book you throw at him. He has learned how to write in cursive this year, and has completed his math year with high marks.

My 7-year-old has gone from an early reader to way beyond grade level over this year. He has made enormous strides in printing, and has achieved high marks in math.

My 5-year-old became a reader this year, and is so proud that she can do her own Bible reading every morning. What a massive achievement! She is also a very tidy handwriter, and is a grade level ahead in math.image

My 3-year-old is learning her alphabet and her numbers, and enjoys doing school with the big ones.

And that’s just the 3 Rs. When it comes to the fun subjects, my children are genuinely engaged, and insatiably curious. None of them want to stop learning for the summer. History is their favourite subject, and I dare to make the  presumptuous claim that they very likely know more history than you do.They certainly know more than I did before I began teaching them.

They are also learning the value of perseverance, of setting your hand to the plough and not looking back. They are learning the value of struggling hard when something is worth struggling for.110907-1427d

Is it hard to homeschool with chronic illness? Certainly! Does it tire me out? Absolutely! Does it take energy that I could otherwise spend napping or doing something for myself? Yup.

But does this disability mean that I should give up the responsibilities that God has given me? By no means!

This disability may seem sudden to some, but that is what invisible illness means. For me, it did not just start last year, that is only when it finally became visible. It has been a 12-year process of decreasing energy and physical abilities. My POTS was not sudden, it only seems that way because I fought so hard to keep going through those 12 years. I kept fighting for normalcy, wondering if I was just lazy, until it finally got so bad that I literally collapsed.

Educating my children is my most important purpose, and I continue to do a great job at it, by the grace of God. Why would I quit something that is working so well? To nap? I don’t think so. His grace is sufficient for me.

What’s the next step?

My goal is to learn to better understand these patterns, and work within my body’s boundaries, so that I can avoid some of the flares.

In terms of treatment, things go on pretty much as they have before. I am still waiting for the POTS Clinic. The geneticist told me that my experience of such a long wait is not unusual. She has had patients wait as long as four years! to get in there.

I am being also being sent to a few different specialists for various issues I have been having. Ho hum, more of the same. The key difference post-diagnosis, is that these specialists will have  knowledge of how these issues present in connective tissue disorders. I am looking forward to this, because the unusual presentation that some of my problems take will not be unusual to them.

My tendons and ligaments will only deteriorate over time, but I can work on strengthening the muscles to try to slow and hopefully prevent further damage. I will continue to do physiotherapy. My excellent physiotherapist was the first medical person to recognize that I have EDS, long before I was officially diagnosed. Most forms of cardio, however, are not recommended with tachycardia, and weightbearing exercises are also avoided in EDS. Swimming is an excellent form of strengthening muscles in a non-weightbearing manner.

Overall, life carries on as it has over the past year. I do what I can on my good days, and get through the flareups as best as I can.

I have begun to notice a cyclical pattern: severe flareups last for weeks or months where I can barely get out of bed; followed by a period of weeks where I can get up and function at a basic level.

Flares may be precipitated by overextending myself (like when I went to the homeschool conference, and triggered a 4-6 week flare) or just by humid weather (like we had throughout August). Right now, I am still trying to recover from the humidity-flare. The weather has gotten better, but the flare hasn’t left yet.

My goal is to learn to better understand these patterns, and work within my body’s boundaries, so that I can avoid or at least minimize some of them.