Aug 23, 2012

Warm Yoga

I have officially lost my mind. I have joined a 'hot yoga' studio for three months!

Before I got sick, I used to be a regular at yoga classes. Once, about a year and a half ago, I had a private yoga lesson in my home to see if I was anywhere near ready to go to a class. It was embarrassing!

But last week, something inside of me 'clicked'. I've been feeling so much better for the past six months, and I've been very careful not to push too was time to give it a try again.

Let me tell you about hot yoga. It feels like exercising in a sauna.

I went into the room a few minutes ahead of time to put my mat down and get comfortable. Lying on the mat, I started to feel perspiration pooling around my lower back. The class hadn't even started yet!

The poses weren't especially challenging, certainly within my range if I modified them slightly, but the heat. Wow.

I longed for air conditioning...I silently cursed myself for trying this hellish endeavor.

And then it was over, and a funny thing happened: I got home and noticed that I felt great. I was so energized that I went for a 5 km walk. (so much for taking it slow)

Since then I've been back twice, and I'm planning to make this an every-other-day routine.

The heat still gets to me, but it's not so bad as the first time.

More than anything, I'm loving the feeling of building strength in my body. I love that my body is capable of holding strong poses. I love feeling my heart rate climb.

I'm looking forward to this three-month adventure!

Mar 4, 2012

New York City

According to my Body Bugg, I've walked 30,000 steps in the past two days. Wow. I must be feeling better.

Feb 24, 2012

My annual physical - the good and the bad

Here is a summary, as I remember it, of what my doctor told me:
  • noticed that my ferritin level is still very low (up to 28!), advises I increase supplements and repeat labs in 2 months. [note: I've been on supplements now for 5 years]
  • believes I have Chronic Fatigue Syndrome and that I need to learn to pace myself,  live with my limitations and treat the symptoms.
  • was very resistant to my questions about the genetic test for MTHFR, telling me a story about a patient she did not authorize a genetic test for who went to the US and paid for the test...apparently she felt this was irresponsible; whereas I think if you have the money, why not?
  • Told me that MCH means "red blood cell height"....height? (I am envisioning a long, tall blood cell at this point). But not to worry, because lots of people are over the reference range for this test. Thanks to my blogger friends, I knew that one.
  • Suggested that an ANA of 1:640 was not uncommon (despite my research showing that a titer of 1:80 is found in less than 5% of the population, 1:120 in less than 3%...)
  • Has trouble believing that a TSH below 5 could make much of a difference clinically (but agreed to continue treating anyway, thankfully)
  • Thinks that giving me access to my lab records may be harmful to me, presumably because I will research the results online and come up with new theories. (but agreed to continue sharing them, with a longer turn around time).
  • Did not seem to fully accept that their office sent outdated lab results to the endocrinologist (after declining to send me my most recent copy records in preparation for the appointment), leading to the specialist choosing a potentially inappropriate course of treatment.
  • Is concerned about me continuing to seek explanations for my fatigue and bringing ideas and research to her for discussion. (I think she feels I won't value her opinion).
BH attended the appointment with me and shared his reflections when we left, saying, "I don't think either one of you is listening to, or understanding the other."

Here's how it looks to me: I feel like she is telling me that I have to give up hope of finding an explanation...if given the Chronic Fatigue diagnosis, I'm afraid I'll get put in that box and forgotten - never getting back to work or to school. 

BH says he doesn't see it that way, he thinks she is trying to manage my expectations.

I know that there may not be an answer, but if I'm not the one looking for it, who will?

In the end, I think we got to a fair understanding, I just wish that I could communicate more effectively with her from the start.

Feb 21, 2012

Penelope 1 - Depression 0

What does it feel like to fight depression?

It was an agonizing effort to push my body forward, despite having no neurons supporting my decision to move.

During the very worst of the dark, ugly feeling,  I forced myself out for a walk. The sun was too bright, the air was too cold. My legs felt like leaden. My heart was pounding.

But then a funny thing happened...about 40 minutes into my walk, I stopped noticing how crappy I was feeling and started noticing the trees, the ice on the walkway, the was like the world outside my head suddenly started to materialize. I started feeling alive again.

In fact, I felt so good that I came home and did another two miles on the treadmill, logging in at over 10,000 steps!

And that is how I fought depression and won this round.

Feb 17, 2012

It's back.

Depression. I'm pretty sure it has come back.

Today's feeling of tiredness isn't the usual, more physical feeling of fatigue that I'm used to. This time it is a sense of deep getting up sounds nice, but staying in bed is just easier.

I've been trying to go for a walk now for the past four hours. I haven't even made it to my shoes yet. The heaviness feels unbearable.

We've had some stressful issues to deal with lately, and when I think about them, my eyes tear up and I feel overwhelmed.

Where did this come from?! I was doing SO well. I was back on the treadmill, even running for up to 15 minutes. This time last week I was thinking I might be able to get back to school again soon. 

Is it even remotely possible that the T3 has triggered this? I know it seems unlikely, but that's the only change I've made recently.

Now I just want to lie down in a dark room and close my eyes. 

I hate, hate, hate depression.

Feb 14, 2012

Day 3 on T3....zzzzzzz

If I thought for a minute that T3 was going to give me a 'kick' of energy, boy was I wrong.

I've slept almost non-stop since starting my T3 dosages (half a pill, twice a day).

Brilliant Husband says I need to give it a chance, but sleeping around the clock - especially when I was actually ON the treadmill last week - seems like a step in the wrong direction.

Feb 11, 2012

Adding T3

Despite my reservations, my visit to the endocrinologist actually went quite well.

The resident who took my history for the better part of an hour was excellent. She quickly picked up on my anxiety and skepticism from previous medical encounters and assured me that she would cover everything possible during my exam. Her presentation of my case to the specialist was impressive - she summarized everything I had shared with her into a complete profile, highlighting the issues that she most felt related to thyroid. Her future patients are going to be fortunate to have such a thorough and caring physician.

The endocrinologist told me that adding T3 made virtually no difference for most people - the only notable exception being people with depression. Because of my history of depression, he thought it would be worthwhile to try adding T3 at 25mcg/day (half in the morning, half at night).

The theory is that in some people, T4 does not effectively convert to T3. I pray that I am one of these people. What a joy it would be to feel like my 'old self' again.

One interesting aside - both the endocrinologist and the resident noted my high ANA level (1:640, speckled), saying that it was suggestive of 'some other process' going on in my body. They took blood tests to look for markers of inflammation; which I should hear more about soon.

So this morning I took my first dosage of T3...and I screwed it up! I took a whole pill in the morning instead of half. Here's hoping all goes well today.

Feb 9, 2012

Seeing an Endocrinologist today

In three hours I will be seeing an endocrinologist to address my fatigue.

I'm in a state of anxiety. All of my fears are triggered. I am worried that I'm in store for another humiliating consultation. The problem, I think, is that I don't look sick.

The clinical question my doctor has asked him is if T3 should be added to my T4 treatment. But I'm hoping that he will look a little further. Maybe, just maybe there is something else that he can identify.

Perhaps if I show up in my sweatpants with no makeup I will look more like a patient? Nah, then he would just write me off as "depressed"... *smile*

Feb 2, 2012

My dog has hives

My dear sensitive dog is covered in hives. The poor little guy. He was up all night scratching.

I have no idea what he got into, but I suspect it happened during our walk last night (as he was fine before that).

This morning I gave him Benadryl, coated him in 1% Cortisone cream & spritzed him in Benadryl spray. I'm holding off on oral steroids, mostly because I am stretched to pay for another vet visit (all three of them have needed treatment in the past month) unless I'm sure I can't control the hives myself.

This afternoon we are going to try an oatmeal bath.

I'm open to any suggestions if my dog-owning friends want to chime in.

Update:  His hives were worse today, so I ended up taking him to the vet. He was given a shot of steroids and is now resting comfortably. Still no idea what triggered this allergy attack.

Feb 1, 2012

Access to lab test results

Dear Penelope, 
...regarding copies of tests: we're wondering if you wouldn't mind
collecting copies of records once or twice per year (consolidating the
requests).  Dr X or I will call you if there is any concern with
reports that come in.  This would make requests for lab copies more
efficient for both of us. 

- Concierge Medical Clinic

Well, it would certainly make it more efficient for them.

But when I'm paying almost $3,000/ per year to have improved access to my physician (email, 24 hour appointments, etc...) I don't think copies of my lab tests are unreasonable.

They also didn't take into account that my recent surge in TSH was missed by the doctor because it fell within the 'normal' reference range.

Perhaps for some people that isn't clinically significant, but for me, I was feeling dreadful until my Synthroid was increased.

Most of all though, having access to my lab tests gives me some measure of control.  Having lost my career, and holding on to the promise of a PhD by a thread, there is very little I feel in control of these days.

I need help communicating with my doctor.

Jan 30, 2012

What is MCH and why is mine always high?

Looking back through four years of lab results, I noticed that one test has almost always come back flagged as "high" - MCH.

Now, I admit, it hasn't been very high, just one or two points over the top of the range, but given that we've turned over just about every rock looking for the source of my fatigue, what if this is the one we've missed?

So I asked my family practitioner why she thought it was constantly elevated. She said that it was likely due to consuming alcohol. *rolls eyes* As anyone with fatigue will understand, drinking alcohol is strictly a special-occassion-one-glass kind of thing, as it puts me to sleep almost instantly.

"Honestly, Penelope...We can't follow every trail you find in your lab results", she said in her usual annoyed voice, "some people just have a higher level than others".

Well...OK, but when I feel AWFUL for years, do you think we could just consider that it might be meaningful?

So, other than knowing that MCH means Mean Corpuscular Hemoglobin, what does it indicate (other than alcohol abuse) and is it really normal to be out of range for years on end?

Is it wrong that I'm pissed off at her non-answer?

Jan 25, 2012

I fell asleep in the middle of my workout.

I'm not even exaggerating.

In the middle of what was supposed to be a 45 minute walk on the treadmill, it hit me like an attack. A sleep attack. If I don't get off this machine right now, I am going to keel over sleeping and kill myself.

I get off the machine. Only 14 minutes walking and two minutes running, damn.

I get down on the floor. Ok, this isn't so bad...I can do some yoga stretches while I'm down here...zzzzzzz.

Thirty minutes later I wake up to find my face stuck to the carpet with the treadmill next to my nose. This is not going to look good on my bodybugg daily workout chart.

I briefly ponder getting back on the machine and realize it's hopeless. Must sleep. Right now.

If it weren't kind of funny, I might just cry.

Jan 23, 2012

my bodybugg (TM)

I have a bug living on the back of my arm; monitoring everything I do for 23 hours a day. Yes, I am under constant surveillance; and I have signed up for this voluntarily.

It's a Bodybugg, a small gadget worn on the back of the upper arm that will be counting my calories burned day in and out. 

Our physician - knowing how much Brilliant Husband and I like our computer gadgets - has recommended that we order Bodybuggs to keep better track of our fitness and food intake.

The bodybugg took a little time and effort to register with the system, but once activated, it is an amazingly easy system to track energy input and output. The program relies on the user to input food intake using a well developed food database. The armband sensor...well, it is all very technical, but apparently is able to track calories burned to a very high degree of accuracy. Users are encouraged to wear the armband 23 hours a day for optimum tracking.

Once the daily information is uploaded into the program, charts are created which illustrate the number of calories burned per minute throughout the day. Graphs display the number of calories eaten & burned, and give you the numbers to aim towards to reach the desired goal.

Yes, the bodybugg is expensive (BH tells me that it costs less in the US, but that Canada's only distributor is pricey at approximately $300 per unit), and requires a subscription to their online program once the first complimentary six month subscription expires; but if you are like me and LOVE information, this is the ticket.

Since putting it on two days ago, I have already become aware of opportunities to increase physical activity in my daily activities...and as for food...Does peanut butter really have that many grams of fat!?

I've set a goal to lose twenty pounds. My bugg informs me that on a sensible plan, we are looking at end of April to meet my goal. Wish me luck!

Edited to Add:
That darn bug is a nag. It coerced me into 50 minutes of unintended treadmill time (walking, slowly) that I hadn't planned on...all because it told me that I hadn't met my targets for the day. I think this means that it's working.

Jan 22, 2012

equal time for my cat

Since yesterday's post was dedicated to my little snow bugs, today I thought I would give equal time to my beautiful Ms Kitty.

Ms Kitty has not been feeling her best lately. Actually, while BH and I were on vacation two weeks ago, she took quite ill and required a visit to the emergency veterinarian. She was diagnosed with a bladder infection and given 21 days of antibiotics.

(21 days, twice a day....have you ever tried giving a cat a pill?)

Besides that, she is feeling the hands of time, with arthritis slowly taking over her hip joints. We have relocated her litterbox to the main floor, as the stairs have recently become too much for her little body to manage. We have also installed a staircase to our bed so that she won't need to jump up and down anymore.

(Tramadol, twice a day...forever)

With her pain under control and her bladder infection treated, she is beginning to look like her old self again. Which is good, because I can't imagine life without my cat.

Jan 19, 2012

The one where I play House, MD. (and it doesn't go well)

Throughout the past few years, while I've been fighting the mystery illness, the only doctor I've felt has been on my side has been my psychiatrist.

I find it ironic that the only physician to advocate a physiological explanation for my symptoms is my psychiatrist, while the internal medicine specialists have brushed me off and made me feel like:

a) a hypochondriac
b) a malingerer
c) suffering from a conversion disorder,
d) I'm wasting their time.

So it pains me that during my last appointment with the doctor I trust the most, I pushed too far and took his comments way too personally.

I've been feeling a lot better since my thyroid medication was increased, but still, not well enough to return to school or even go for a long walk.

I am frustrated beyond belief and have made it my mission to diagnose myself. You see, my thinking is that if I don't do the legwork, and something gets missed, I'm the one who will live with the consequences.

It's not good enough for me to know that my thyroid is suddenly tanking again. I want to know "Why??"

With my ANA still sitting at a hard-to-brush-off 1:640, I am looking for clues to what's going on in my body.

I've been told the most likely culprit is Hashimoto's, but a test of thyroid auto-antibodies came back negative.

So I asked if there was any chance my symptoms could be pituitary. I've looked into adult growth hormone deficiency and the symptoms all fit. Apparently, a 2007 study found that people with thyroid disorders have a reasonable chance of having anti-pituitary antibodies.

This theory would describe my high positive ANA and the symptoms of crushing fatigue and periodic depression.

So when he looked at me warily and told me I was taking this too far, I felt like I was losing my only ally.

After seeing tears start bursting from me, he told me that he would look into my theory with a growth hormone test (but not the stimulation test; which I understand is the 'gold standard). He promised he would stick with me, but I feel like I've pushed the relationship too far by coming up with a far-out medical hypothesis.

He assured me that such a disorder would be very rare. But then again, I argued, so is WPW, so is Factor V Leiden, so is Malignant Hyperthermia - but being rare hasn't stopped me before from being diagnosed with some uncommon disorders.

The appointment ended with me in tears and him looking frustrated and saddened. I'm not sure where to go from here.

Do I apologize?
Do I send him a card and thank him for his support?
Do I just wait until my next appointment and bring it up then?

I feel alone on this journey and I'm afraid I've lost the support of the only doctor willing to travel it along with me.

Jan 16, 2012

Jan 12, 2012

Heaven, I'm in heaven...

Actually, I'm in St. Kitts, but close enough...

and, amazingly, wonderfully & surprisingly - I feel GRRreat!!!

Swimming, lazing about, snorkeling, eating delicious fish, making Vitamin D, what more could I ask for.

Jan 9, 2012

Catching Up

Hello and Happy New Year!

Sorry for the hiatus, but when I'm not feeling well, I hate talking about it, even on my blog, which I created so that I could talk about it...

When you last heard from me, I was in Florida with my family. I did my best to keep up with everyone, but it was a slog. Shopping trips were cut short so I could get back to the condo to nap, swimming (which started strong) fell down to a crawl until even the security guard at the pool commented that I was looking tired.

Mostly I wanted to be alone, as I felt I was always disappointing my mother with my persistent fatigue.

But if Florida was tough, coming home was worse. I watched my energy nose-dive until walking up and down the stairs left me collapsed on the floor, trying to catch my breath.

"Maybe you're just out of shape", mom offered.

"But Mom, I was just swimming 80 laps a day, three weeks ago", I hissed.

"Well, yes, that's true..."

"I walked with you up and down the beach for miles." Why does no one else see that this doesn't make sense?

"Well, yes, I see what you mean," she said, but she didn't. She really thought I needed to just hit the treadmill.

I suppose secretly I hoped myself that maybe my cardio just needed some work. I hit the treadmill with a 5 minute run. It was heaven. I felt refreshed and more alive than I had been in months. The next day was fabulous, I was full of energy and thinking of getting back to school.

The following day I did not leave my bed. Nor the day after. Nor the day after that. Standing up made me so dizzy that I couldn't even make it through mass. My heart would pound and beg me to sit or kneel.

My doctor ran blood tests and called me back to say everything looked fine. I asked for a copy of the report and scrutinized every line of reference ranges.

I noticed that while not flagged, my TSH was 4.2, much higher than the usual 1.0 to which I had become accustomed. Could that small a change make me feel this miserable? Clearly the answer was yes.

Oh yes, and my ferritin was back down to measly 45, despite daily iron supplements.

And lastly, my fasting blood sugar was one point away from hypoglycemia at 3.7 mmol/l (64 mg/dl). A look at my A1c showed that low blood sugar was at least a three month trend.

Low thyroid, low iron, low blood sugar. No wonder I felt eight shades of miserable. But since none of the tests were 'flagged', everything must be good, right?

And the mystery ANA? It remained a 'high positive' at 1:640.

While my concierge-family-physician thought everything looked good, my psychiatrist (who was also copied on the tests) called me a few days later and walked through the results with me; confirming that my blood tests were odd, even though still technically within range.

I find it ironic that my psychiatrist seems to be the only physician who believes that something is wrong with me...physically.

A little extra Synthroid and 2012 would be off to a better start, right?

Well, maybe...