Monday, April 25, 2016



When Chronic Illness Makes Me Question Myself as a Parent







   I just turned 50. That is such a huge number to look at. 50 years old. And I’m not handling it well. I know they say age is just a number or you are only as old as you feel, but the truth is, I am really upset by this. You see, I am sick. I have been for 20 years. But I always believed I would beat the disease. Not necessarily in the traditional sense, like a cure, but certainly by being able to contain it and live with it. And I mean live a normal life. But this year as my birthday approached in mid April, all I could think about were the things I didn’t do, and the things that I would never be able to do.
    I know this is something I did to myself and I know that concentrating on the negatives in life isn’t good, but it’s what happened and I didn’t know how to stop it at the time. But here’s the surprising part: turns out this derailment of thought was necessary. And in the end, it changed my whole outlook.
    We all question ourselves at some point in our lives. I have 20 and 22 yr old active sons. I have been sick their entire lives. There is so much I wish I had done with them. So much I wonder about. So much in their lives now that I think about. I constantly ask if it would be different had been healthy. If I had been able to take them to the park every day or had more energy to help them when they were doing school outings and projects. When they wanted to learn instruments and I couldn’t keep up or when they joined Scouts and I forgot and fell asleep after work. I wasn’t “that” mom.
    Would things have been different if I didn’t work while I raised them so that my energy was all for them. Or would they have learned more from a mom in a different career. One that hadn’t been looked upon as a liability and bounced around from job to job as my illness became too much for my employers to handle. If I had been able to ignore my pain and fatigue and push through the numerous infections my debilitated immune system allowed into my body. But I wasn’t that person either.
    Would they be different if I had been able to keep a cleaner house and cook more handmade meals. If I could have baked cookies weekly - and I love to bake - or been better at making them lunches every morning rather than depend on the school system. (A system I frequently forgot to pay as a side effect of my illness but a system that always fed my children none-the-less.) I wanted to be the cool mom on the block whose kids had friends over after school without worry that dishes would be overflowing the sink or snacks would be sparse. I did NOT want to be the embarrassment on the couch in PJ’s because standing in the shower hurt that day. But that’s who I was.


                                That’s who I WAS. And this is who I AM.


    I am the mom of two young adults who actually care about their friends and family. I am someone who raised two amazing young men who work 40 hours a week at physically demanding jobs and pay their own bills. I am someone who worked to better the lives of countless individuals with developmental disabilities and TBI without giving in to agency pressure to set aside the desires and beliefs of those individuals. I am someone who survived being hit by a drunk driver, being attacked at my job, a near fatal blood reaction, natural childbirth, 4 surgeries, and 2 fractured backs. I am someone who has been through stitches, IV’s, and ER visits, and have held my children through the same. I am someone who has travelled to Europe and flown a WWII warplane. I have travelled by train, plane, boat, and bus and seen awesome things. I am someone with Sjogren’s, MCTD, Inflammatory Arthritis, and Fibromyalgia. I am Someone...

And I am someone who is living my own life, no (more) questions asked.

Sunday, April 3, 2016


Don’t Touch Me Your Hands are Cold!…

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    I will try to type an entire post today, but honestly, my hands are just not cooperating today. They are cold. They are pretty much always cold, but since my hometown in Upstate New York has taken an overnight trip in a time machine back into winter and snow, my hands are especially cold. And that makes life difficult. (Or hilarious, take your pick...)
    You see, as well as Sjogren’s, I also have Raynaud's, which is basically autoimmune induced terrible circulation in my hands and feet causing my fingers and toes to turn lovely shades of purple when they get cold. (Or whenever they feel like it.) It also causes them to swell, stiffen, go numb, or react quite painfully to touching anything cold. In other words, I’m not someone you want on your team in a snowball fight and typing is slow going.
    Of course, typing isn't the worst of it. Having Raynaud’s is like having fingers that literally turn into hot dogs at the worst possible times. It makes things like writing or handling small objects really tough. You should see how shaky my handwriting has become. Sometimes even hanging on to things is hard. We do not own drinking glasses in my house. They break too quickly. Translation: I drop them. A lot! Not all the time, but enough to figure out that I do much better with mugs and things with a handle. This way I don’t have to worry about my manual dexterity or whether or not I can feel my fingers that day. Even frozen, purple fingers can hold a mug when the handle is jammed up onto my hand!
    Then, there’s the issue of anything sharp. Such as knives. Yup! I own ‘em and should never, ever use ‘em! Forget that my wrists and hands are weak. There are plenty of things even a weak person can slice up, especially with a nice sharp knife. But when my Raynaud's kicks in and I go into sausage-finger mode, controlling any sharp object is impossible. It’s like putting on a hand puppet then using its hands, controlled only by your fingers, to direct the knife with. Try it! I’ve actually sent knives flying across the room trying to slice cheese. I could be a circus side show… (Although the worst was trimming my rose bush and severing a tiny artery in the tip of my finger because I couldn’t control the clippers. I had to get one stitch. Just one. Who does that??)
    But with all broken glass and knife throwing, the hardest thing to deal with is actually cooking with Raynaud's. I know, sounds odd. But it’s true. Here’s why: I cannot touch anything cold. Not just freezing cold, but any cold. So taking chicken out of the fridge to rinse and bread or eggs out to crack and bake with ends up being painful. You should see me make meatloaf! It’s like watching a quirky contestant master a new challenge on Hell’s Kitchen. There’s hand flapping, hot water, winter gloves, and lots of jumping up and down while “chanting”. It’s also a riot, takes way longer than it should, and usually involves tears.
   One final example: I was at my brother’s house last winter. He has a raised area next to his steps with bushes surrounded by a low brick enclosure. It was full of snow. We were just dropping something off, so I had my gloves off. I slipped on ice walking past those bushes and fell with my hand going elbow deep into the snow. I wasn’t actually injured, but the pain I felt from the sudden cold was so intense that my reaction and discolored hand caused my brother and his wife to believe I had broken something. (though my asking for a towel and screaming ‘get it off’ confused them!)  And it’s just getting worse. So I never put my gloves away. Even in the summer, I can be seen wearing wool gloves in public... But hey, better that than being mistaken for a circus act!

I’m entertaining enough as is...