Category Archives: Chronic Illness

Things I love, and hate, hearing

“I don’t know how you do it”

I keep hearing this statement lately, and while I really do appreciate it, it tends to stir up frustrations. It feels so good to have other people recognize how hard things are for me and how much I do in spite of that. The problem is that I have no idea how I do it most days either, and when I’m really struggling like I have been lately it just kind of sucks to be reminded of that fact.

“Why don’t you go on disability?”

This is nice to hear because I feel like it is acknowledging the fact that I am very sick and struggling to keep up with life; but it sucks to hear too because it’s just not that easy. First of all, most people have no idea how difficult it is to get disability because they’ve never had to worry about it. Second, something about applying for disability feels like giving in to me, and I don’t give in. Also, I am not the type of person to just stop, I don’t know how to just not do things. No matter how sick I’ve been I’ve always made it to work, paid my bills, taken care of what I needed to (even if it was only the bare essentials), and no matter how badly I want to stop doing all of that…I don’t know how.

“But you’re so young!”

Again, this feels like you’re acknowledging that things suck for me…but really, I’m not too young, no one is ever too young. Five year olds get cancer, 19 year olds have massive heart attacks, newborns are born with heart defects; bad things can happen to anyone at any time, and they don’t ever stop to ask your age before they happen. Life just sucks like that. If you’re lucky enough to have never experienced a situation that you’re “too young” for, then count your blessings. So please, don’t say this to me…every time someone does I have no idea how to respond, “uhm, thanks?” Being young doesn’t change the fact that it DID happen to me, that it IS happening to me every single day, and when I hear this all I can think about is how there are so many people younger and sicker than I am.

“You need to live your life”
“Stop focusing on being sick all the time”
“Why don’t you ever just do what other people your age do?”

I heard all of these recently from someone very dear to me, who I know meant really well, but I still got mad. These are nice to hear because (most of the time) I know there are really good intentions behind them; these usually come from older family members or friends who are concerned that I am missing out on life and experiences I will regret not having some day. The problem is that I am living my life, as best I can anyways. I DO see my friends, when I feel up to it; i DONT focus on being sick all the time, just as much time as it takes to take care of myself and hopefully get better; and I AM living my life, this is it.
You don’t think that given the choice I wouldn’t rather be out having fun, having a career, having hobbies, being “normal”?! I am painfully aware of all the things I cannot do, please do not remind me of them.

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Validation

So I’m going to try to write, but I warn you it may not be the most coherent thing ever. My brain has been slightly better the last couple of days, but still pretty dumb. :/

I’ve been thinking lately, what a very strange feeling it is to finally be recognized as being as sick as I feel. For years I have sworn that I feel like I’m dying, but every blood test/scan/etc comes back normal, or at least “just a little off”. Not lately!

The last month has just been a deluge of abnormal tests, new diagnosis’, and things to deal with.

First, the diagnosis of a heart conditions and scheduling a pacemaker implantation (coming up in 2 weeks!! Ahh!)

Then, results of my thyroid/iron panel labs; despite being on high doses of thyroid hormone my levels are still low! What to do about that, I have no idea at the moment. My doctor says raise my dose age (again!) but I’m not so sure about that…

My iron panel is so freaking confusing…
Ferritin (storage iron)- VERY low (but my Dr says it’s ok?)
Total Iron- normal
Binding Capacity- low
% Saturation- high
So do I take an iron supplement or not?! Ughh.

Then, because I am not responding much to antibiotics (not much herxing, and not feeling better either…actually I am worse than when I started treatment) my doctor wants to give me a picc line. (This is essentially an IV, that is surgically implanted, and you use to receive IV meds in your home). This is very aggressive treatment, and tends to make people herx very badly. I agree that I need it, but I have a life! I have to work! I can’t get that sick! So we agreed to postpone this discussion until my next appointment.

At my doctors appointment she drew some blood, for a couple of different things:
1) to send to Igenex for another western blot test (the best testing option available at the moment)- still waiting for results 🙂
2) to send to a researcher at a local university who has developed his own method of testing that is said to be very accurate and reliable- he found “multiple positives for Lyme” in my blood. I definitely have Lyme disease!
3) to run a C4A test (this tests inflammation caused by Lyme or toxic mold exposure)- *3 1/2 months ago my results were 2437 with a normal range of 0-2830* Now? 21,311!!!. To quote my doctor this result is “astronomical” and “the highest she has ever seen”.

Finally, an explanation for why I have been saying for months that something is really, very wrong…and for why I have been steadily feeling worse since starting treatment.

It’s weird, really weird. For instance, this morning I saw my cardiologist, and I mentioned to the medical assistant that I was feeling pretty crappy today so she did an EKG. When the doctor walked in the room, she took one look at the EKG results and said “well no wonder you feel like crap!!” I thought I was dreaming! A friend heard my C4A number and texted me last night saying “I think you might technically be the sickest person I know…no wonder you are having such problems”. I am now *that* person that my doctor uses as anecdotal evidence for her other patients…you know, when they say “I have a patient who…”…that’s ME. (I know this because a friend of mine saw my doctor yesterday and told me that she was telling him a story of one of her patients who had a C4A level over 20,000…he said “I wonder who that could be?”)

So weird. So so weird. But really nice too.

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I want to write

I want to write. I’ve been trying to days but I just can’t. I have ideas galore bouncing around inside my head, but as soon as I sit down to write them I just can’t. 

I hate my brain lately. I don’t think my brain fog has ever been like this. I can’t even focus enough to hold on to a thought in my head. I feel like my brain is on drugs, or has attention deficit disorder or something. Just when I think I’m actually thinking and functioning ok, a little while later I catch myself staring at the wall for who knows how long, and realize I’m just kidding myself. (I’ve stopped to stare at the wall a total of 4 times in writing this post so far). 

So for now, I will try to calm my mind and be content to stare…and you all will just have to wait for my brain to settle down long enough to let me write a real post. (Hopefully soon, I have a theory as to what caused this so I’ve changed my supplements to try to fix it…let hope I’m right!)

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Anti- everything!

It’s been a rough few days (surprise surprise right?). About 10 days ago I started a new pile of different antibiotics that includes some antimalarials too (used to treat coinfections that come along with Lyme disease and can also make antibiotics more effective), so when I woke up at 4am on Sunday morning in horrendous pain I rejoiced! I said “finally! A herx! I’m so excited!”…I know, this sounds totally crazy but with Lyme disease you hope for stuff like that because it means that the treatment is working, just trust me.

I did what I am supposed to do; I called out of work, spent the day in bed, slept a TON, drank a ton of water, and did as much detoxing as I could manage…which wasn’t much since I was so weak that a trip to the bathroom meant another 2 hour nap, but hey, I did my best. I was in massive amounts of pain in my muscles, neck and lower back; I had a migraine that was blinding if I tried to sit up; I had a sore throat and a low grade fever and no appetite. By Sunday night it had eased up and I figured “cool, it’s passed”…until I woke up Monday morning. I woke up feeling fatigued but pretty much like my usual self, except for a rash all over my hands. It was like little bumps, which I had had before but never more than like 3 at a time and I counted 27 first thing Monday morning. By the time I got off work Monday evening it had spread to cover the palms of both of my hands, all my fingers, and the soles of both of my feet, and I still had a sore throat and sore tongue (with red dots on both of them too).

It was excruciatingly painful…like being covered in blisters and fire ant bites at the same time (for those of you who don’t know what fire ants are, they are little demon ants are everywhere where I live that bite you and leave poison behind that burns and hurts terribly).

I said “if this isn’t gone by tomorrow I’m calling the doctor immediately”, and went to bed to research the crap out of it (naturally, what else would I do?). I determined that it appeared to be a viral infection and when it wasn’t better I got in to see the new nurse practitioner at my primary care doctors office.

That poor woman, it was like her first week on the job and here I am, a super complicated case to begin with, and now covered in some mysterious and very painful rash that she had no idea what it was. It was like bumps, and blisters, and red dots, all at the same time. See?

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After all the doctors in the practice had a big meeting about me, it was decided that I should start an antiviral medication and do lots of labs to check things like white blood cell count and inflammation levels.

The theory is that this is a reactivation of a virus that has probably been laying dormant in me since I was a kid…like how adults get singles from the same virus that causes chickenpox in kids, only it’s much worse in adults.

Wonderful, I really can’t catch a break. 😦

The fun part is, now I am on:
Antibiotics
Antivirals
Antimalarials
And antifungals!

I’m just anti- everything!

I guess that’s a good thing? I hope I’m covered now!

I can’t say for sure if the antiviral med has helped or not; I’ve taken 2 doses so far (it’s for twice a day for 7-10 days) and I’m slightly less miserable at the moment…but I also took a crap ton of ibuprofen this morning. :/

The sad part is…it wasn’t a herx :(. Just when I thought we had found an antibiotics protocol that would produce results…nope! Just kidding! It’s just one more thing to dump on the shit pile. Great, what’s next?

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Awesome Awesome awesome article.

I often am told how amazing it is that I deal with so much at such a young age, how hard it must be and don’t I wish I had a normal life like everyone else my age. Short answer: yes, sometimes…long answer: read THIS

 
If I’ve learned anything through this journey, it’s that while we may not get to change the facts of our story, we get to dictate the way that it’s told. We get to decide the role we’re going to play in it, how we’re going to interface with each chapter, and whether or not we’re going to be the victim or the heroine of the saga.

So give me a cape and call me a superhero, because I’m not the victim of this story.

 

Through the experience of regaining my health, I’m learning that we’re all served our set of monumental challenges. My life may (unfortunately) look wildly different from the lives of my peers, but each has its own set of challenges.

 

They may not involve ambulance rides, surgeries or medical anomalies, but I think we’re all given a set of obstacles that shape us into who we’re meant to be, and guide us toward where we’re meant to go. Whether it’s the loss of a loved one, destitution, or a broken heart—sometimes we need that detour that launches us onto a path we wouldn’t have otherwise found, and a guide to teach us how to walk down it.

Some of my favorites of the lessons listed:

9. It is indeed humanly possible to consume more than six servings of vegetables without it completely ruining your day. A vegetable rule of thumb—if you hate it, then roast it.

 

10. Sign up for Amazon Prime. When there’s only two pills left of your favorite supplement and you’ve forgotten to order more, 2-day shipping will be free (also good for chocolate flavored almond butter emergencies).

 

16. You are not The Hulk. Don’t start at full dose. Invest in a pill cutter, and for a while, decide whether or not it’s going to be a “little half” day or a “big half” day. Feel like a rock star when you pick the bigger half.

 

17. That inexplicable funny feeling that you sometimes get about things? It’s your intuition. Trust it. It’s smarter than your heart and less biased than your brain.

 

20. Study ingredient labels like it’s your college major. And if you can’t pronounce it, don’t eat it.

 

25. Make peace with your sweatpants. The world is lucky you got dressed.

 

29. Your body loves your gluten-free diet. Just give it some time to prove it to you.

 

32. Try not to underestimate yourself. Your body may be somewhat unreliable, but your spirit isn’t.

 

Some of these are my favorites because they are sooooo true…and some because they are ones I have yet to master!

 

35 Unexpected Lessons I Learned from Late Stage Lyme. ~ Candice Mitchell

 

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July 4, 2014 · 5:26 pm

Akhilandeshvari- no my cat did not just walk across my keyboard

So I’ve had kind of a negative attitude lately (ok, a really negative attitude)…especially this week since it’s been kind of a rough one; well today I read this post on Elephant Journal, and I decided that I am going to try to change that.

 

Akhilandeshvari:

“Ishvari” in Sanskrit means “goddess” or “female power,” and the “Akhilanda” means essentially “never not broken.” In other words, The Always Broken Goddess. Sanskrit is a tricky and amazing language, and I love that the double negative here means that she is broken right down to her name.

But this isn’t the kind of broken that indicates weakness and terror.

It’s the kind of broken that tears apart all the stuff that gets us stuck in toxic routines, repeating the same relationships and habits over and over, rather than diving into the scary process of trying something new and unfathomable.

Akhilanda derives her power from being broken: in flux, pulling herself apart, living in different, constant selves at the same time, from never becoming a whole that has limitations.

 

This goddess has another interesting attribute, which is, of course, her ride: a crocodile.

Crocodiles are interesting in two ways: Firstly, Stoneberg explains that the crocodile represents our reptilian brain, which is where we feel fear. Secondly, the predatory power of a crocodile is not located in their huge jaws, but rather that they pluck their prey from the banks of the river, take it into the water, and spin it until it is disoriented. They whirl that prey like a dervish seeking God, they use the power of spin rather than brute force to feed themselves.

By riding on this spinning, predatory, fearsome creature, Akhilanda refuses to reject her fear, nor does she let it control her. She rides on it. She gets on this animal that lives inside the river, inside the flow. She takes her fear down to the river and uses its power to navigate the waves, and spins in the never not broken water. Akhilanda shows us that this is beautiful.

 

 

I love this so much. Somehow it was exactly what I needed to read today.

Between my divorce and recent health discoveries and frustrations I feel so broken. I feel like over the past year that crocodile has dragged me into the river and spun me around over and over and over until I don’t know who I am or where I’m going anymore. I am so afraid; of where my life will go from here, if I will ever get well or rather just continue to get worse and worse until something kills me, if I will be alone forever, if I am too sick and stupid to accomplish anything with my life. Those are just the ones I can vocalize, I feel like there are so many more fears hiding under the surface that I don’t even understand enough to be able to describe them.

So today I have decided to be a goddess; I will get on my crocodile and ride my fears right to something beautiful. I will be never not broken, and it will be amazing.

Akhilanda is also sometimes described in our lineage like a spinning, multi-faceted prism. Imagine the Hope Diamond twirling in a bright, clear light. The light pouring through the beveled cuts of the diamond would create a whirling rainbow of color. The diamond is whole and complete and BECAUSE it’s fractured, it creates more diverse beauty. Its form is a spectrum of whirling color.

Image

With brokenness comes great potential not only for change, but for refining and smoothing and shaping.

 

So now is the time, this time of confusion and brokenness and fear and sadness, to get up on that fear, ride it down to the river, dip into the waves, and let yourself break. Become a prism.

All the places where you’ve shattered can now reflect light and colour where there was none. Now is the time to become something new, to choose a new whole.

 

Read the full article here: http://www.elephantjournal.com/2011/06/why-being-broken-in-a-pile-on-your-bedroom-floor-is-a-good-idea-julie-jc-peters/

Pictures from the article, and google, respectively.

 

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By loving I am staying alive…

“Here I am, rumbling along in my pigpen of emotions, lost on my sofa for eons now, feeling inadequate in so many vital ways. I’ve lost a sense of myself. It’s unnerving to feel adrift and unmoored from the natural grounding forces of my work, marriage and society. Many hours waffle by where I am reeling in confusion… Loving is about all I have left that I can do. Or so it seems. Patiently, I listen to all that goes on in their days. I listen to what is in their hearts and on their minds. This I can do readily and in peace… By loving I am staying alive… If I can’t trust that I’ll get well, if I can’t trust that I’m a valid person by the mere fact of just being me, at least I can trust that I’m still good at loving.” -Out of the Woods, by Katina Makris Pg. 131

I have been reading this book for a month now, and I’m only halfway through. Partly due to how foggy and full of cotton my brain has been lately, I find it almost impossible to read most days and end up just setting the book down and staring at the wall instead; but also partly because it has been a very tough book for me to read.

The book chronicles the authors battle with chronic Lyme disease, and is so well written that it is physically painful for me to read at times. I’ve been there. I’ve felt that. I remember how much that hurts. I feel that way right now. I am all too familiar with that dark, fearful despair. I know that hopelessness.

I feel as though I am feeling every pain and emotion through the pages of the book. Don’t get me wrong, it’s a wonderful book, and I think anyone who knows someone with Lyme disease should read it, as the author does such an amazing job of painting the picture of just how isolating and hopeless and scary this disease is. But be forewarned, if you are ill yourself, it’s tough.

For some reason this passage got to me, in both a happy and a sad way. It says exactly how I feel, only much more eloquently than I could ever say it.

I don’t know who or what I am. I don’t know what I’m doing with my life. I don’t know if I’ll ever get well. I don’t know if I even exist outside of this disease. But I do know that I am good at loving .

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Pity party time

I don’t do this often, but tonight I am going to let myself.

This sucks.

I’m sick of feeling this way.
I’m sick of spending my evenings boiling coffee (see here for an explanation of that statement) and taking pills instead of out doing fun things like people my age should be.
I’m sick of spending more time in doctors offices than I do with my family (my ex husband used to hate that).
I’m sick of the pain. So much pain I don’t have words to describe it. The best I can do is brain numbing, gut wrenching, cant think about anything else, pain. It makes me want to cry, and throw up, and lay down right where i am and curl up in the fetal position and die. <—- I’m sick of that.
I’m sick of my body tic-ing uncontrollably, at the most inconvenient times.
I’m sick of worrying.
I’m sick of being scared to go on with my life; sick of doubting my abilities to do what I want to do.

I’m just sick, and tired; and sick and tired of it all.

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Desperate Detox Measures

I have sat down several times in the last couple of weeks to write this post, and somehow it just never gets written…I guess it’s a weird topic to write about!

As part of my lyme disease treatment I have recently started doing some things to help with detox…namely, coffee enemas. (I know, I know…)

I won’t go in to the details, you all know how google works, and I will put some links at the end of this post if you really want to know. Or you can always email me if you want an actual explanation of the nitty gritty details, or help with how to get started doing them yourself.

What I do want to tell you, however, is my experiences with doing them.

I started doing them because I knew I was killing (or hopefully killing!) lyme buggers, and needed a way to make sure they were getting out of me! (If the dead buggers and the neurotoxins they release don’t get out, they cause awful herx reactions, which are quite unpleasant to deal with, to say the least!) Other, perhaps more popular, methods of detoxing are epsom salt baths, dry saunas, etc. Well where I am staying at the moment I do not have access to those things. So that left me with the enemas, and since detoxing is so so SO important, I figured it was worth a try.

The first few times I started slow (less coffee then is recommended), and didn’t really feel any different afterwards. So I got frustrated and gave up for a couple of weeks. But I have a friend who swears by them, and she insisted that I needed to give it another try, so I did.

After doing one daily for a couple of weeks now, I feel comfortable saying that they DO help. The biggest thing for me is that I can literally be in a lot of pain, have a headache, and just be feeling really crappy, and after an enema I can go to bed without needing a pain killer or headache medication or anything. That is essentially life changing when you deal with the amount of pain I deal with on a daily basis. Now, it is not a miracle cure, this does not mean that I have NO pain…it just means that it lowers the levels from “OMFG kill me now!” to “I can handle it”.

I also have noticed that my “IBS” symptoms have been much much better lately. I am not sure if this is due to my recent diet changes, the guns blazing attack I have been waging on candida, or the enemas…or all of the above. But regardless, I’ll take it! Being able to eat a meal without running for the bathroom is a wonderful thing :].

I am pretty confident that the enemas are part of the reason that I have not had too many issues with herxing over the last 4 weeks. I have had a couple of doosies (yes, I said doosies, don’t mock me), but nothing nearly as extreme as I have heard of other people experiencing, or what I expected to experience. We shall see, however, if this continues to be the case when my doctor switches up my meds in a couple of weeks!

The downside is that the enemas are a huge energy suck. I do mine right before bed, because once I do it I have no choice but to go to bed and lay down. I have absolutely zero energy, often so little that I can barely stand or walk for more than a few seconds. I see this as a plus, however, it means my body is working hard on getting me well and getting rid of toxins and buggers!

So for now, all grossness aside, I guess I’ll keep doing them. I can’t argue with decreased pain, and at this point if it’ll help me feel better, I’ll try it!

 

Information links:

Click to access How_Coffee_Enemas_Work.pdf

http://www.thewellnesswarrior.com.au/2011/11/wellness-warrior-tv-how-to-do-a-coffee-enema/

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JUST FAT

I learned the most miraculous thing this week, that I am actually not *just* fat and out of shape!

I was recently diagnosed with something called POTS, which stands for Postural Orthostatic Tachycardia Syndrome (A mouthful, I KNOW). What’s THAT, you ask? “Postural Orthostatic Tachycardia Syndrome (POTS) is a form of dysautonomia. POTS is a subset of orthostatic intolerance that is associated with the presence of excessive tachycardia on standing. The current diagnostic criteria for POTS is a heart rate increase of 30 beats per minute (bpm) or more, or over 120 bpm, within the first 10 minutes of standing”.

I have been researching this condition some lately, as mine seems to be flaring up, and is making me quite uncomfortable. Every time I stand up I get so lightheaded that I have to hold on to things and wait for it to pass, and several times my vision has gone black and I have nearly passed out (passing out is very common in people with POTS). So in my research I came across this symptom list…

“Many POTS patients also experience fatigue, headaches, lightheadedness, heart palpitations, exercise intolerance, nausea, diminished concentration, tremulousness (shaking), syncope (fainting), coldness or pain in the extremeties, chest pain and shortness of breath” I have SO freaking many of those symptoms (fatigue, headaches, lightheadedness, heart palpitations, diminished concentration, tremulousness, pain in the extremities, chest pain and shortness of breath!), although most of them could be caused by any number of the 20183273 other conditions I have. But what got me was the “exercise intolerance” thing, what the heck is that!?! So naturally, being the research junkie that I am, I looked it up…

Exercise intolerance is a condition where the patient is unable to do physical exercise at the level or for the duration that would be expected of someone in his or her general physical condition, or experiences unusually severe post-exercise painfatigue, or other negative effects” 

Hmm…that sounds like ME!

For years now I have complained to doctor after doctor that I just can’t exercise, that every time I try I feel absolutely awful and nearly collapse, and of course I get told every single time “well it’s not easy for anyone at first”. Yeah, I say BS. I have literally been unable to function after 8 minutes on a stationary bike at physical therapy, that’s NOT just being out of shape. I once, at age 15, had a cardiac workup because I kept having spells of nearly passing out and heart palpitations at school (hmm…sound familiar?). The doctor sent me for a stress test, a test that involves walking on a treadmill at a gradually increasing speed and incline. During this test my heart rate skyrocketed and they had to stop early…the doctors solution? I was “overweight and needed to join a gym”. *Note, I know most of you don’t know me in person, but I am most definitely not obese, and at age 15 was at an incredibly healthy weight for my body type and DID workout quite frequently! (This doctor ended up blaming my issues on my use of “Xanax” which I have never taken in my life. Idiot.)

So last summer I requested a heart rate monitor for my birthday, as I wanted to begin attempting to work out to lose a little weight (taking 124532 meds for years which ALL have side effects of weight gain will really mess up a girl’s body) and felt I should keep an eye on my heart rate. I was already on a beta blocker at the time, since a while before that my resting heart rate (heart rate after sitting still for at least 15 minutes) was consistently around 115-120 (normal should be 60-80) and it was extremely uncomfortable. So given my history of heart rate issues I wanted to keep an eye on it while working out.

I began lightly jogging a couple of days a week and wore the monitor every time, and every time it would record strange things such as drops down as low as 40 beats per minute while walking, and spikes up to 220 beats per minute when bending over to stretch. I told my doctor and she said the monitor was probably inaccurate. After that, due to increased pain and back issues I was told not to jog anymore, so I started going to the gym to do the elliptical machine. Low and behold, every single time I got on the machine it’s built in heart rate monitor would record my heart rate as 160-170 beats per minute in the first MINUTE I was on the machine. According to The American Heart Association my target heart rate for during a workout is 100-170 beats per minute. Something told me that I should not be hitting the top of that range in the first 60 seconds of a work out…so I asked my doctor, “I have no idea” was her reply. Keep in mind that all of this time I have been on a blood pressure medication designed to lower my pulse, imagine what those numbers could have been like without that pill!

I can’t explain how angry it makes me to know that no less than 5 doctors have missed this, relatively simple to diagnose, condition and instead have chosen to destroy my self image rather than do a simple test. The records I recently received from the first cardiologist 10 years ago indicate that he was heading in the direction of a POTS diagnosis when he randomly decided it must be due to my “xanax use” and told me I was fat and did not need to come back to see him.

The more I read about POTS the more I realize it has been causing a lot of issues that I was writing off as normal with chronic illness or even normal for normal people for years. And needless to say, the more relieved I become to finally have an explanation besides “you’re fat and out of shape” Now to recondition my brain to actually believe it…

 

 

 

http://www.dysautonomiainternational.org/page.php?ID=30

http://en.wikipedia.org/wiki/Exercise_intolerance

http://www.heart.org/HEARTORG/GettingHealthy/PhysicalActivity/Target-Heart-Rates_UCM_434341_Article.jsp

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