Cold Hands, Warm…muscles? by Sam

One day last week, while I was making dinner, my hands suddenly turned bright red and felt as if I had poured bleach all over them. Thinking I must have come in contact with some allergen, I immediately stopped what I was doing, and thoroughly washed my hands. The redness and irritation greatly subsided in 15-20 minutes, but my hands remained irritated, and the skin was peeling, as if I’d had a severe sunburn. Over the next few days, the symptoms recurred, so I contacted my PCP via email, including a photograph of the initial reaction. I supposed there were three possibilities:
a) the CRPS was spreading to other parts of my body (rare, but not unheard of)
b) these symptoms, ‘though not like any I’d experienced with it in the past, might be related to Raynaud’s (to be fair, the symptoms were not exactly like CRPS, either, but it does involve both redness and burning pain)
c) this was something entirely new and unrelated to any of my previously existing conditions
     We played phone tag for a few days until I finally got a call from a nurse on Monday of this week. My doctor felt it was most likely that the symptoms were, in fact, a more extreme manifestation of Raynaud’s than I’d experienced in the past, and that, as my symptoms seemed to be getting more severe, it might be time to consider medication.  Hence, I was referred to a rheumatologist. That appointment occurred on Thursday of this week.
     As luck would have it, the medications used to control symptoms of Raynaud’s Disease are blood pressure meds; and, because my blood pressure is low, my doctor doesn’t want me to take them.  You see, unfortunately, they could cause my blood pressure to drop even lower, and this could result in dizziness and falling. Falling has already been rather a chronic problem for me, and it has been deemed an unnecessary risk, as has dangerously low blood pressure.
     So, I have been given recommendations to step up my efforts to stay warm. These include things that might seem obvious, like using hot water bottles and heated gloves/socks/blankets, warming creams, taking warm showers when I come in from being outside, making sure to keep my hands and feet covered and protected, even when I don’t feel cold, and keeping my core warm. They also include things that might seem a little less obvious, like increasing my salt intake, in hopes of raising my blood pressure, and building muscle mass. The challenge, here, my rheumatologist pointed out, will be striking a balance in which I work out to build muscle mass, but am careful not to accidentally lose weight. This will involve adding protein-dense calories to my diet, which means adding food to my diet.  (I know.  This doesn’t seem like brain surgery.  Stick with me.  It’s trickier than it seems.)  I started working on this as soon as I got home on Thursday. I immediately baked a loaf of peanut butter bread, replacing part of the flour with almond flour.  Then I made myself a peanut butter and jelly sandwich with it.  I figured, that way, at least I am getting lots of protein (and lots of calories ~ yay!)  Because that working out and not accidentally losing weight thing?  Believe it or not, that really is a challenge.
     I know. This all sounds sort of stupid. But…food is hard.  I mean, I have had food issues for a long time.  First and foremost, there are the lingering eating-disorder-related issues, which will always linger; but, on a more basic level, there are all of the food allergies and sensitivities.  I am allergic to milk protein (and elderberries, and echinacea, which don’t come up much, so that’s okay, really.  Oh, and shellfish ~ which never comes up, because I’m vegetarian, but does somewhat complicate eating at restaurants, or buying some prepared foods).  I also have IBS, and, while it seems to be fairly mild most of the time, it can rear its ugly head at any moment, and, at those times, it is triggered by: eggs, white/refined carbs (so, any bread, pasta, or baked goods made with that, white bread, white rice ~ basically, I do better with whole grains and more fiber in my diet), and fried foods.  Then, there are times when I think it is triggered by food.  Oh, also, stress.  It is also triggered by stress.  Then, add to that the fact that I am on a medication that makes it hard for me to keep on weight, even when I am not working out.  So, now, I am trying to eat the right things that won’t trigger my IBS, so I can be sure not to lose weight while doing PT, so my CRPS won’t flare up, so I can then work out enough to build muscle mass to try to keep myself warm ~ but not so much that I accidentally work off any of the extra peanut butter I ate.
     Because then, maybe I will be buff enough to haul in some firewood and build a big fire, and then we will all be warm.  By “we,” of course, I mean me, and all of my fingers.  And my toes. My toes are also cold, but I don’t see them often, because they are very far away, and usually inside several pairs of socks. I miss my toes.
     Ah.  But we have a gas fireplace.  So, forget about that firewood.  I’ll use my muscles to lift more peanut butter sandwiches, instead.
     On Friday, I didn’t manage to do much working out, but I ate pretty well.  I mentioned this to Hallie, adding my concern that, if I keep doing this, I won’t build any muscle, and all that extra protein will just be converted to fat.  “Well…fat will keep you warm,” Hallie responded, quite correctly.  And, so, I guess we’re good.  Because, the truth is, fat will keep me warm, and I really, really need to stay warm.  Nevertheless, I have always dreamed of being sort of buff.  Warm, and buff.  It sounds kind of dreamy.

     I guess I’ll keep working on the muscle-building thing.  To be perfectly honest, I was already working on that.  Which sort of makes me wonder if I should feel a little bit insulted at the implication that I need to build muscle mass.  Except…well, I really do need to build muscle mass, and I know it.

I guess I needed a New Years Resolution or two, anyway.  Y’all watch: by 2018, I’m gonna be stronger than I’ve ever been.  And warmer, too.

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Chronic Illness and Hypochondria ~ by Sam

I decided to tackle this issue today, because it hits very close to home (right smack in the middle of it, actually), and causes a great deal of stress.  Since we talk about strategies for lowering stress in our daily lives, let’s talk about a major contributing factor: chronic illness.  I am chronically ill.  I have fibromyalgia, IBS, Raynaud’s disease, asthma and an assortment of allergies (food and environmental).  My bones are weak, and I am hypermobile (which isn’t really a problem in and of itself, but does leave me prone to injury).  I seem to excel at injuring myself.  (Interesting note: people who have fibromyalgia tend to be more prone to injury, so I am not alone.)  In my life, I have had an assortment of broken bones, sprains, a partial ACL tear, a Type III tear of the Medial Meniscus, and, currently, I seem to have ruptured a tendon in the top of my foot.  I don’t “think” I am sick.  I don’t take my illnesses and injuries too seriously.  I really am sick and prone to injury.  I don’t get bumps and bruises; I get torn ligaments.  It’s different.

Oh, and I have panic attacks.  Hell, wouldn’t you?

But, I am not writing this to say, “Oh, woe is me!” and I am not writing it for myself.  I am writing for the thousands of other people who suffer through chronic illness.  I am writing this because there seems to be a great deal of misconception when it comes to chronic illness.  Some of these illnesses are “invisible,” meaning, when you see me on a daily basis, I don’t look “sick.”  So, it’s hard for people to remember (or believe) that I am.

From the outside, I look lazy, or weak.  So, I am writing to caution you, when dealing with anyone in your life, to remember that you only get to see the outside.  The world only gets to witness what we choose to put on display.   Many of us our very private people, and prefer to keep details of our illness to ourselves (you can Google them all, or ask me questions privately, if you like), and most of us hate being perceived as whiners and complainers.  So, we don’t talk about it.

Except when we do.  Because, sometimes, we DO need to talk about it.  I seek out others who have similar issues, because I know I can vent to them, and they will understand (online forums are great for this purpose).  I rely on the support of my friends and family, who I know love me, warts and all.

When you are tempted to think someone is being weak or lazy, or complains too much, please pause and think.  It’s possible that they have already fought and won numerous battles before they even left the house that morning ~ things you will never know about, like, maybe, that man woke up unrefreshed, feeling like someone spent the whole night beating him with a bag of hammers, but he got out of bed, anyway.  Maybe, that woman cried through her morning shower, because all of her skin feels severely sunburned all the time, and washrags feel like sandpaper; but she showered, anyway, because you can’t just go around dirty all the time.  Maybe, the child had to use a nebulizer this morning, and is jittery and grumpy as a result, because, otherwise, he couldn’t breathe.  Maybe, that incredibly slow walker at the the grocery store moves that way because it feels like she’s stepping on broken glass.  Maybe, your friend is late because he had an attack of explosive diarrhea, and he’s still not 100% sure it’s over, but he showed up anyway, because it’s not like he isn’t used to this.  Maybe your coworker is distracted because she is just in so much pain that she can barely think.  The fact is, we just don’t know what people don’t tell us.

Please, if you know someone who is suffering from chronic illness ~ or even someone who is just “always sick” ~ try to be supportive and understanding.  I cannot count the number of times I was called a “hypochondriac.”  There are two problems with this: a) I am not a hypochondriac, and that person with whom you are irritated might not be, either; and b) hypochondria is a real, serious, and treatable condition.  If you truly believe someone you care about suffers from hypochondria, for God’s sake, help him.  It’s important, here, to caution anyone dealing with a person (yourself, or someone you love) who seems to be “always sick” not to chalk it up to hypochondria and move on.  The fact is, even if no doctor can find a diagnosis, that person may still be suffering from some kind of chronic illness.  Don’t give up.  There are answers.

Lastly, I will offer a few words of caution about those “answers.”  They are just that: answers.  So, now, we know what to call this.  We know how to begin to treat it, and possibly improve the situation.  However, chronic illness is called “chronic” for a reason.  For some people, identifying the culprit means starting on the road toward recovery and improved quality of life.  For others, it means learning to manage symptoms, learning how to live with being chronically ill.  So, don’t hold your breath waiting for a “cure,” but don’t give up on finding one, either.

How do I manage the stress of being chronically ill?  I’ve found this works:

Relax.  Breathe.  Brace yourself.  Soldier on!

Thanks for taking the time to read.