Sorry for the long post… I just have so much to say…
A dear long distance friend asked for the “real” scoop. So here goes...
I hesitated with this post, not for what others might think, it’s just that it is hard to talk about…
Many people think that I am an extreme extrovert, and while that is true; I am also very private. When I say private, I mean I don’t always share all of what’s in my core. I have written about it for sometime now but, it’s important that I talk about the real toll this disease has taken on me…
I am not sad, angry or in the corner licking my wounds. My spirit is strong, that’s why it’s a good day to share the pain, because I can go back to living when I am done writing. As I share this post, I write it mainly for the future. For the grown up Ian and Norah. For their future selves, of their lives filled with adventures, joys, pains and roads not traveled, as an insight into what is real, what their Mom was battling as she did the best she could for them…
For some of you this post may be too hard to read, or too “real”. I get it, but I need to put voice to my truth…
I am sitting on the couch listening to Nanci Griffith and Norah is quietly singing and she doesn't even realize it. She is playing with a gift from her birthday, an adorable stuffed animal from my amazing friend Jess and her beauty Eve. The song is so appropriate, “Across the Great Divide”. If you have never heard Nanci Griffith, you are truly missing one of the greatest singers ever. She sings folk, but its more than that, she tells stories with her voice. I hear her sing and I hear prayer, it speaks to my soul. She has too many albums to pick my favorite, but if you don’t know her, you should... But, back to my road...
Having a chronic disease is a betrayal, it’s personal, it’s DEEP, because your body has unintentionally done it to yourself, and that is hard. You weren't stung or bitten, you weren't hurt by someone’s negligence…
Your body has just thrown in the towel on you…
Now this disease has given me gifts; I never would have known, but today’s writing is about loss and pain…
Today is about what I can’t do…
Severe cold urticaria means I can’t take food out of the fridge without gloves, 10 seconds of holding a gallon of milk can make my hand double in size, I have multiple episodes a day, the worse my attacks, the worse the pain comes. My pain today is excruciating, my lungs feel like I ran out in the cold all day and then threw myself down a marble staircase. My ribs hurt, bone pain, when I take a deep breath, it not only hurts, but it makes me cough, so my breath is short and trying. Days like this are often and can really sap your spirits, but they come when they come, or when I over do it.
What is overdoing? It’s what you call living.
Yesterday, I got up for the birthday girl and brought it for her. I took a nap, but by dinner, it was obvious I was done. Attacks brought on by the cold feel like bee stings on whatever is exposed, and the pain gets worse as I warm up, and then I get bone pain and my body swells up everywhere. You feel like you drank the whole bottle of tequila, mixed with PMS, and then throw the hangover on top. I just feel pain everywhere because the inflammation is given gasoline by the histamine response, the body’s ADT alarm system… It’s that someone beat me kinda pain, and my normal pain tools aren't providing the cover they usually do and the side effects suck, after a certain point I may slur my speech from my cocktail of meds or I just sleep the afternoon away. That’s hard, no one wants to waste a day, and I am much too busy!
Bad days mean my legs are wobbly like jello or stiff uncomfortable so it’s hard to walk, I shuffle and some days my balance is off. My words aren't always easy to come, sometimes that’s from the meds and sometimes it’s the disease, brain fog is a BITCH and I’m not getting any younger. I fell in Ian’s room today looking for dirty socks. That’s just the pain and early morning lack of mobility.
I wake up every morning in pain, the more my core body temp changes the more chances I will sweat which triggers the events again. I change my clothes three times a day, due to the full body sweats. I have taken to buying multiples of the same outfit so people don’t notice my costume changes. When I go to the doctors office they have to take paper towels to my body to remove the excess sweat when I take my shirt off… I carry undi’s, Bras and tshirts in most of my purses, because when I sweat through, I then get the chills horribly and have to start all over again. I have this problem all year round, no temp is perfect anymore. The sweating causes hives as well. My doctors have forbidden me to exercise. Who has a doctor that tells you not to exercise?! But, when it can send you into anaphylactic shock, it’s a problem. All of these changes make me very nauseous. So I throw up often from the cocktail and other times I just puke from body weariness of too many temperature changes…
So sometimes, I get frustrated when people say, “Oh, if you could get the weight off you would look/feel so much better.” Or, “why don’t you do more”. Or, "why don't you get out of the house, it will do you good". It doesn't even make me angry anymore; it just hurts… Hurts to my core, the place few get invited…
Prednisone is an enemy to women. It helped me pack on the pounds. But, currently I don’t eat any gluten (that’s been for 6+ years), and now I’m not doing dairy, soy or sugar, to hopefully reduce the inflammation. We’ll see if it helps.
So it’s not like I’m sitting down to a gallon of ice cream. Nope, ice cream makes my throat close from the cold, internal hives really suck and you can’t breathe.
And as my final aside, I have a handicap parking permit, and I use it when I’m by myself or with the kids. So if it is cold, I can get inside as quick as possible before the hives, coughing and full blown cold urticaria attack begins. A short hike across a cold parking lot can be killer. Please don’t look at “normal people” using handicap parking permits as slackers or jerks, you really can’t see all disabilities. When I have makeup on and run into Target, you have no idea what I went through to look this good, so don’t judge... OK thanks, I needed to say that!
That’s why when I say this disease is killing me, it’s not from a place of fear or depression, it is a fact. My attacks are getting worse, they come more quickly, I’m constantly in fight/flight mode. The disease has more gas than ever and the experts are stuck…
Harvard told me that there have been numerous emails flying around discussing me and my case from the top EXPERTS. Where Harvard said, ”I had to look stuff up that they are talking about, it isn't even in textbooks...“ One expert says, “o’ I have seen one like this, to which someone else said o’ I've only ever seen 4 or someone else says I've never see that..” Harvard said, ”they are talking about such unbelievable diseases and they are talking about your symptoms.”
But, most importantly, Harvard told me, ”these experts are interested, invested and motivated.”
I can’t ask for much more… but, I am…
So to my beauties, please know that I fight for you both and Daddy every single day… We will find answers, I will be well and I couldn't love you any more than I do…
To all of you on team Fergie; I love you, thanks for holding my hand on this journey.
I must get well, because I have some people who need me to play…
Namaste… the divine in me, bows to the divine in you….