When I started my blog a year ago I had this aspiration to be a regular and frequent writer. As we all know, life is known for complicating things and changing our plans for us. Also, when I started writing, I was still in a deep depression and had decided pouring my thoughts out of my head would help me cope with what I was dealing with. I had mentioned before that my depression was induced mostly by years of living with undiagnosed celiac disease, causing a wrecking havoc inside my body and mind. It’s been a tough ride but I have managed to get that beast tamed enough to function on a day-to-day basis. Having that said, I wasn’t always in a good state of mind or physical capability to continue my writing simply because resting was more important to me. I would give in and let one illness or the other get the better of me and take over for few days. Because when you’re dealing with serious neuromuscular issues, most often fighting back will only make it worse. If your body can’t deal with walking around the house or even simply lifting your arm to reach for a glass in the cabinet over your head, that’s its way of telling you to stop and slow down, not to keep going. In case of Fibromyalgia or Lupus, non-excessive exercising like swimming, stretching, yoga and such, will definitely help keep your muscle tone and strength in place and give you the much desired energy boost. Even when you feel you’re about to have a flare up, you can try warming up your muscles & joints with some delicate stretching and it might come handy at the end. Unfortunately, when simultaneously you also suffer from MG, those activities can only take place if you’re in remission or currently are not experiencing any major symptoms.
Having MG means letting your muscles rest whenever they tell you it’s time. And they will communicate that to you that every single day, especially if you overdo with something. If you’re anything like me, once you feel better you want to catch up with everything that’s been piling up and you do all the shopping, chores, cooking, errands in one day. And then you realize what a stupid idiot you are for doing so, since now you’re about to pay for that, big time. Meaning, you’ll probably be immobilized for a day. Or two. Or more. You can’t know for certain because MG is not kind enough to produce a schedule it has planned for you. One week you need a walking cane, then next week you’re standing on a ladder picking sour cherries from a tree just to have a flare up few days later. You’re an Olympic Champion on Monday and then Tuesday your title is upgraded to an extra word, making it Special Olympics this time.
Yes, I do have a walking cane and I’m not ashamed. I’m a 35 yo woman with a walking cane and I’m owning it! I see peoples stares, sympathy and disbelief in their eyes. Some of them simply stare, the others try some small talk like ‘Your hips?’ or ‘Ohhh, my grandma was like that’ (errr, thanks…?) to which I always say ‘No, it’s a health condition’ and I cut it right there. I also have a handicap parking tag as of recently and while I had never seen myself applying for one, it has come to the point when I just had to. I don’t require a walking cane every day, only during really bad flare ups, but it’s not just about my compromised mobility. Having Lupus and having to walk through the entire parking lot of a supermarket in a full sun is the last thing I should be doing. Being able to park closer, on a designated spot, will now help me cut both the distance and the exposure time. That parking tag is not a privilege, it’s a necessity.
When I saw my rheumatologist few weeks ago, he kept reminding me I should be wearing a big floppy hat. I was covered shoulders to toes, but my head remained uncovered. There are 2 reasons I don’t wear hats, especially floppy ones:
- I overheat when my head is covered. In NY heat and humidity I’m covered in sweat in a matter of seconds without a hat. Add a head cover and I’m drowning in my own sweat. As disgusting as it sounds, sadly it’s just what I have to live with. And overheating with MG is a big no no, since it can trigger the symptoms.
- CCS – Can’t See Shit in hats, even the ones with small rims. My balance is funky, I have inner ear issues so if I lose my peripheral vision due to a head cover, while it simultaneously covers my ears, I don’t hear (hearing issues as well) or see cars in parking lots. I have that same problem with hoods in rain coats and it’s a miracle I’m still around. I should have been run over by tens of cars by now, lying dead in a puddle in Target parking lot, LOL.
So I explained that to my doctor, to which he said – why don’t you try a parasol then? Well, where do I start?:
- I’m already walking with a cane (and that said cane is sitting next to me in his office, bluntly staring at him, almost hitting him in a face and he still seems to not notice it) and I have only one available hand left.
- When I have my son with me, and a walking cane, I cannot hold a parasol at the same time unless I grow a third hand which I will hold my 3 yo tornado with. Simply – making sure my son doesn’t jump in front of a car is my priority right now.
- I’m not capable of holding my arm up for more than 3 seconds at a time. I gave up blow drying my hair for that reason, so my hair looks like a bird nest, cause I’m still debating which compact hair dryer to choose – the cuter one or the more powerful one? Sadly, I can’t afford a $499 Dyson sonic hair dryer that weighs less than those five $100 bills I would have to use to pay for it. I know, right???
So, that being sad, my doctor didn’t really have anything else to offer. He’s a very nice, well mannered, old school Jewish doctor and I know he’s only trying to help but I need to weigh the risks myself. I cover myself with a 100SPF sunblock every day, before leaving the house. I wear long sleeve shirts, long pants and covered shoes in a 85F weather. I stay away from the sun as much as I can and I don’t leave the house if I don’t have to. I took on a new hobby, taught myself how to sew and recently made few long sleeve shirts myself!
I hate every single day because I can’t even take my dog for a walk and by the end of the day, when the sun is not as strong, I’m usually so drained I can barely move, so the walk is off the table anyway. So my dog spends majority of her days outside, in our backyard, which she loves and doesn’t mind but whenever she hears a word ‘walk’ in any conversation, her head turns sideways like her spine had just snapped, she gives me a ‘sad and cute’ puppy look and assumes it’s time to go. While my dog is outside, my cat sits at the door, yanking at it, crying and desperately trying to claw his way out of here, out of jealousy for the dog and also because he’s a cat, that doesn’t need an explanation. So, being a good mommy, I got a cat harness with a leash. And I taught our cat how to walk on it in front of our house and in the back yard. Streets scare the bejeezus out of him and who can blame him? So now, whenever the dog comes in or goes out, the cat is there first, ready to blast off through the screen door if he has to. It so happens I had to grab him by his back legs and drag him inside few times, as he almost made his way out. We do not keep our cat confined in a dungeon, by any means, but he’s a shelter-raised cat since his kitten days. We got him when he was 5mo and he’s never known wild and he doesn’t know what his natural enemies are and how to win a fight with another cat, or skunk, or racoon or even a stupid squirrel. Or a bear, cause that’s the type of a neighborhood we live in. Not to mention we live in a close proximity to a major highway.
OK, so putting aside my random rant about my animals :), I have recently done the math and it came to 70 doctor appointments in the last 16 month! I feel like I basically live at doctors’ offices. There are months, like this past June, where I had at least 2, if not 3, appointments each week. It’s exhausting, frustrating and, most importantly, costly. In 2 weeks I’m seeing a neurologist at New York Presbyterian/Columbia, in NYC. I already have a thoracic surgeon lined up there (for thymectomy) and just need to get a pre- and post-op neurologist care from a doctor who works in that hospital, so she needs to get familiar with my case first. I hope the surgery can happen soon after. I desperately need to give it a shot. I refused taking steroids and I’d rather have the surgery, than put that crap in my body. I gave up dairy and refined sugars and all processed foods but so far I’m not observing any major improvement from that. Damn, how I want chocolate right now!
Peace,
E.
What The Fibro?! 