Wednesday, March 22, 2017


    As chronically ill people, we go through a lot on a daily basis and depending upon how old we are and when we were first symptomatic, we could have been experiencing this poppycock for decades now. This constant crap shoot day to day can affect our personality. That being said, most of have and awesome sense of humor! Except for the fact that it’s just a bit off center. (OK, Mine is WAY off center!)

                                 With this in mind, I introduce you to:


  • Feel Good Fishing: We start off old school with a game based on the childhood favorite ‘Go Fish’. For this game, you need to call your fellow sickies with matching diagnoses because medication similarities are a must. You will also need the deck entitled “The 13 Most Commonly Prescribed Meds For Autoimmune Diseases 2017” plus the “2017 Chronic Pain” expansion pack. (The “Herbals and Supplements 2016” expansion pack is ok as well if mutually agreed upon. The 2017 edition will be released in early summer.) Edit the decks to reflect each player’s current med list (or wish list) and shuffle. Proceed as you would for classic ‘Go Fish’ but at the end of each round, everyone wins whatever medications are depicted in the matches they make. *Reduce the stress of going to the doctor and reduce co-pay costs while having fun!

  • Side Effects BINGO: Another favorite that’s been around forever, BINGO can be fast paced and a lot of fun. And considering the unusually high number of warnings and side effects that go with autoimmune medications, there should be enough combinations to create quite a few BINGO cards for hours of play. I suggest collecting a small donation from everyone at the door to hand out to the winners. (To offset the cost of the medications causing all the side effects mentioned on the cards.) *Absolutely NO choosing cards based on preferences of side effects. You get what you get just like in real life ladies!

  • Med Match: Played like the old tile based game ‘Memory’ where little kids flip a tile and then flip a second tile to try to find matching photos, this is a modernized video game that exercises poor memory and identification skills by having players match “tiles” on which one has a brand name and the other has a generic name for the same medication printed on them. It can be played as a two player competition game or as a one player timed game against yourself. Bonus rounds feature ‘Spell That Generic!’ and ‘Name That Med By Photo’.

  • Betting For Body Parts: An offshoot of the immensely popular Texas Hold’em poker game, ‘Betting For Body Parts’ utilizes standard chips that feature the joints, muscles, and organs most commonly affected by autoimmune disease and chronic pain. Game play is strictly poker based: a pair of aces beats a pair of twos, a straight beats a flush, four of a kind beats anything… The key is in the way you place bets. Players bet by ‘asking’ for something they need as featured on a chip. (I need a T10 vertebra. I fractured mine and it's just not going to be the same again.) A player calls a bet with a need (chip) of their own. Winners get the part they need. (Doctors are standing by.) *These events usually have very limited seating. Book your tickets in advance!

I encourage all of you in the chronic illness world to check out these awesome new games-made with us in mind-when planning your next social event!

Monday, March 20, 2017

The Day I Decided To Ride The Elevator Sitting On My Butt


    Being Chronically Ill is not easy. It's a constant fight. When that sickness is an autoimmune disease, it's that much harder because the illness itself is actually attacking our body. We are constantly tired from fighting. And to top it all off, autoimmune diseases can cause their own special kind of weakness and fatigue. So much so that there are days we don’t leave the house. There are days we don’t even get out of bed. But what happens when one of those days coincides with one of our many doctor’s appointments? Especially if it’s one we can’t, or don’t want to cancel.
This is the story of one of those days.

    First let me say that we never know when these days will hit. There is no rhyme or reason to how our diseases work. I feel like there are little aliens running amok in my bloodstream purposefully crashing into stuff to set off my white blood cells. Then they sit back and watch the show while I deal with aftermath. Anyway, since we can’t predict when our little aliens will act up, we all go to bed the night before an appointment crossing our fingers and toes that we will wake up feeling well enough to get ready, maybe even shower, and get ourselves to the doctor of the day.
    That’s how this story begins. And where it quickly started to slide downhill. For one thing, as much as my disease can cause mind numbing fatigue, it can also cause ‘kitty brain’. You know: racing around in the middle of the night for absolutely no reason what so ever! And I take a sleep med. Go figure! But once a kitty starts going nuts around the house, there’s no stopping them. (Ask a cat owner) So, I got no sleep, though ironically, my three cats did.
    As my appointment was later in the day. Apparently, the one thing I can’t do is nap to make up for lost sleep, so I rested. But sometimes, even while resting, I can feel the weakness growing in my muscles. It’s an annoying feeling almost like oversensitive skin but deeper. So now I’m tired, my muscles are annoyed, and I still have an appointment to get to.
    At this point, showering and stretching would be my go tos for relief. But showering is a double edged sword as it can sap strength as much as it can perk you up. Then again, I hadn’t showered in 4 days. (No judgement, it happens!) It was a necessity. So I got it done and left for the appointment. Still very tired. A bit out of breath. But clean and wearing actual clothing. I even managed some make up.
    Here is where I mention that I own a cane and that I took it with me. I don’t like falling. Better safe than sorry right? “Sure.” (Said with much sarcasm) You can prepare all you want but if your cat darts in front of you, you’re gonna to trip over her.
    Which is kind of what happened on the elevator. When it jerked to life to take me to the second floor, my legs gave up for the day. I went straight down, and I’m tall. Even my cane wasn’t any help. Fortunately, I have a very strange sense of humor though I wonder what people would have thought seeing a 6’1” tall woman sitting on the elevator floor laughing hysterically!
    I ended up sitting there for a good ten minutes or so. I didn’t have the strength to get up and there were no people around. While I sat, I tried to figure out why, when I fall in front of people, I get angry, and when I fall alone, I don’t. It’s not necessarily embarrassment, it’s anger. Am I angry at the disease? Its effects? My loss of control? And wouldn’t all that be the same whether in front of people or not?
    I now think it's the fact that after all I did to get myself here, the rest, the stretching, the preparation, I still fell down. And when that happens in front of people, I feel helpless. Alone, I can do what I need to to recover, like just  sit there for ten minutes. But around people, there’s a fuss that I really don’t want to deal with. There are also questions I don’t want to bother answering because I don’t want to try explain my disease at that moment or deal with the fact that there will probably be people there who won’t believe me. But on the elevator alone, I got to sit and recover as long as I needed to. I even got to laugh. Whether it was at the fact I had so much go wrong that day, at how pathetic I felt, or how hysterical I must have looked, I was laughing-which never happens when people are around. And let’s face it, it’s good to laugh at ourselves. Even when we are sick and miserable.

Come to think of it, that may be the best time to laugh at ourselves!

Tuesday, March 7, 2017

Struggling With My Good Days As A Chronically Ill Person


    Most people hear the words “Chronic Illness” and think about all the bad stuff we associate with being sick: pain, fatigue, weakness… And it’s very easy for those of us who are diagnosed chronically ill to lose ourselves in that side of our lives, after all, it is the most prominent thing about being sick. But the truth is, no matter how few or far between, we do have good days. Days when we have energy, when we mercifully feel no pain, and when we feel productive and, dare I say, normal.
    BUT, these are days when we face special challenges that you may not even realize. You see, when someone spends most of their life compensating for effects of a disease that has caused in them develop a certain mindset, that mindset is very hard to let go of. So on days when we have no disease effects present, and nothing to compensate for, our minds can still hold us back. Here are some of the things we don’t discuss on our good days:

  1. (And this is a big one) What will everyone think? You see, as chronically ill people, we spend many hours trying to convince others that we are sick. That our illness actually exists. This even includes doctors at times. (There are still doctors that feel Fibromyalgia is all in the mind) We get accused of faking it all the time. So what is going to happen if we suddenly hop up out of bed and say, “Guess what? I feel awesome today!”? Those accusations will only increase. This is why too many of us don’t mention their good days. Which is sad because we all deserve to take advantage of any good day we have to take a break from the constant weight of these diseases.
  2. The next step, though, would be actually taking advantage of our good days. Say we’ve accepted an invite to lunch or shopping with friends. It will take us extra time to prepare. We take every precaution we possibly know to get through the day with no issues. Remember, we are feeling great that day and we really don’t want anything to ruin it. This includes the fact that there are probably more drugs in our purse than at a Colombian raid! But we won’t tell you we’re packing. And we’ll do anything not to use any of those meds, especially not in front of you. Even if you know all about our illness. Because it will kill the illusion: Normal For A Day…
  3. To continue with the ‘Normal For A Day’ theme: most of us will push to keep up. OK, lunch isn’t a push inducing activity, though I’ve been known to have a drink or two when I shouldn’t, some other activities are. Walking around shopping or at craft shows or nature walks can be quite difficult. And on a good day, we are essentially free of our disease. If not forever, at least for that day. So we will do our absolute best to keep going ALL DAY LONG. Even though we know there may very well be consequences tomorrow. And if we are starting to feel bad, we won’t tell you. Because we don’t want to. Kill the illusion and all, remember?
  4. Now comes the hardest for us to overcome. Understanding how much we just want to feel normal, when we actually do have a good day, many of us feel guilty. The reason is easy to understand: we live needing so much help from others that when we end up having a day when we don’t, we feel like we need to make up for it all. You see, none of us wanted to be sick. We’ve collectively lost jobs, or the ability to take care of our kids properly, to cook or to clean, to walk… We now rely on help to complete daily tasks. Which we accept, but which we really don’t want to need. So we feel guilty about that. So when we wake up to a pain free day, yeah, all we want to do is go out and have fun and forget we’re sick. But we feel like we should repay all that help and support we’ve been given throughout the rest of our illness. It’s a catch-22.

    So what are we actually supposed to do on our good days? I say we truly need to put our diseases behind us. I get that it’s not easy to do. It means not only letting go of our personal attachments to what our lives have become, but to also letting go of what society has programmed up to think. We are what and who we are. We are chronically ill. We are fighters. We overcome. And we deserve joy as much as every other human being on the planet. So when our disease takes a break, we should too. Others who are not sick will never truly understand us, so don’t expect them too. Allow your mind to put aside any ideas of judgement or repayment. Just take what relief your illness gives and run with it. Fulfill yourself. Do something you know you couldn’t do in pain. And be happy.

             You deserve it! And you have an entire community of people supporting you!


Thursday, March 2, 2017

Suggesting I Get More Sleep Isn’t Always Helpful


    We have all experienced a time when others have had advice for us. Whether it’s about our diets or our laundry, it seems there’s never a shortage of people who want to tell us what to do. I realize that most of them are trying to be helpful and without people sharing all these little hints, we wouldn’t have the smash hit “Hack My Life” would we? But when it comes to dealing with a chronic illness, the advice train seems to spin out of control with all sorts of hints that will cure us because ‘Aunt Edna did it and she’s all better now’. Obviously, if there was something that would make us ‘all better now’, we’d be doing it.
     But I’m going to put the big picture aside for now and concentrate on one of the most common health tips I’ve ever been given: Just Get More Sleep. It’s catch all advice for every illness in society. Got the flu? Get more sleep. Got migraines? Get more sleep. Constipated? Get more sleep. Someone even told me to get more sleep when I was pregnant and having the worst morning sickness ever. I ended up in the hospital, but I’m sure had I managed to get some shut eye, I’d have stayed home and finished knitting those booties! I want to share why this popular tip doesn’t always work for those of us with chronic illnesses.
    I’ll start by explaining, very generally, how our diseases work on the brain. Somehow, they chemically interfere with our ability to fall into the type of sleep that’s the deep restorative kind. So when we sleep, we don’t go into the deep REM sleep that helps us heal. I don’t profess to understand how this all works, but I can tell you that it’s true. I now take medicine to help me sleep and fall into this deep healing pattern. If I don’t take it, I wake up in pain. So for many of us, simply getting more sleep isn’t going to help unless we can get the right kind of sleep.
    But, even getting the right kind of sleep might not help us because our muscle weakness and fatigue are not actually caused by being tired. You see, at a VERY basic level, autoimmune diseases work in the same way the common cold or the flu work. Our bodies produce cells that attack the infection. But in some of us, these cells attack healthy tissue. It’s that process that makes those of us with autoimmune diseases overwhelmingly fatigued. And if it happens to be our muscles being attacked, we get very weak as well. The problem is that sleep won’t help this. Unlike a cold or the flu, which are both processes with a beginning and an ending, when the body attacks itself, there is no end. Sleep is meant to divert energy to the fight at hand-kill the invading organism-and then continue life as normal. But there is no invader in autoimmune cases, just a never ending fight. There are pauses in the battle, but no ending, and no return to normal.
    Finally, and probably most overlooked by well wishers, is quite simply-our pain. Most people don’t understand the pain these diseases often cause. I don’t even tell the whole truth about it anymore. What’s the point? I passed the point of having pain free days long ago and who really wants to hear someone say they are in pain every day? And the only options I have left for controlling it are to start a regimen of narcotics or not. But with pain during the day comes pain at night. And this is what most others don’t understand. That people in pain have trouble sleeping because of their pain.
    I know it seems intuitive to say if you sleep more your pain will lessen. But it’s because when a person is injured, that’s how it works. The body relaxes as it goes to sleep and the injury can ‘unswell’ and start to heal. But in a body that’s always in pain, movement can help keep us loose and mask our pain. The lack of movement at night can highlight our pain. Our muscles tighten more. And we get fidgety trying to get comfortable. Add to that the fact that many of us have tender points on our bodies, or areas that hurt to be touched with even small amounts of pressure. Like laying on a bed. Even those nice pillow topped ones can feel like cement. Sometimes, it’s just easier to sleep in a chair. But we all know how great that sleep is.
    So all in all,I understand that the idea of getting more sleep is usually very good advice. And most of us with chronic illnesses do max out on our sleep. We have to. But also keep this in mind: If you have a friend or loved one who is chronically ill, they may be experiencing one or more of these issues. They may be trying to get more sleep already and it might not be going well. So maybe next time just ask them “How are you sleeping?”