I wake up jump out of bed. I forget the realities of my body. Every morning it’s the same thing. Hot searing daggers shoot into the bottom of my feet as they hit the floor. Every morning I forget. And every morning it takes my breath away. I wobble as my body adjusts to the fire in my feet.
You are just waking up after a long restful nights sleep. I haven’t slept through the night in ten years. I toss all night as I readjust my body to the pain it feels when laying in one position for too long. If I’ve managed to get three to four hours of uninterrupted sleep I usually wake up with a headache from grinding my teeth at some point in the night. If I’ve actually slept four to five hours? I wake up with horrible back pain and pain upon emptying my bladder. My slowed kidneys having held in toxins, which are now circulating in my system, for far too many hours.
If I don’t sleep? I wake up feeling like you do when you’ve had an arduous workout. Except you find relief once you start moving. It takes me at least 2 days to not feel as if the muscles are pulling away from the bone.
Once up I hobble to the kitchen to start coffee. As I walk the fibroma tumors jab into the arches of my feet. I can no longer digest artificial sweeteners, chemicals or dairy. I measure out the precise amount of stevia and coconut milk I can ingest. I sip my coffee and wait for the caffeine to stimulate my bowels. If it does? Win win! I’ll be able to zip my jeans up today. If the coffee doesn’t stimulate my digestive tract? I’m left unable to zip my jeans and a horrible burning in my gut that will linger for hours. Each morning is a gamble.
Next I make my smoothie. Not because it’s a fad or it makes me skinny. I’m fat from toxins, fluid, inflammation and meds. I drink a smoothie because this early in the morning I will choke on anything heavy. Proteins will cause my esophagus to spasm. Breads and cereals are out because of the celiac disease. Anything with unknown chemicals are not an option for fear of allergic reaction.
Once I’ve finished my breakfast and coated my stomach I swallow two pills for my kidneys, a pill for my esophagus, a pill for my thyroid, a pill for migraines, a pill for nausea, a supplement for hair loss. I then drink 6 oz of straight fiber to keep my intestines moving.
I can now begin my day.
I take a shower. If the hot water loosens up my joints I shave my legs and wash my hair. Although if I stay in the hot water too long it starts a Reynauds attack. This is when my blood vessels over react to cold or hot conditions. The vessels spasm in my feet and hands. The pain is akin to scalding water. Once out of the shower I carefully apply lotion over my wrinkly face and tightening thickened skin. If my arms and neck loosen enough I blow dry my hair before muscle cramps set in my hands, neck and shoulders.
Next I go through a five step process to cover all of the pigmented spots on my face. Cover the open sores on my hands, fingers and top of my feet. I carefully apply lip color in a five fold step. I’ve masterfully learned which colors will work to hide my purple lips. They are purple from lack of blood flow. It doesn’t bother me but I find it does concern people who look at me. If I have lipstick on it’s never a topic for conversation.
Before I leave the house I make sure I have my epipen, migraine rescue meds, nausea medicine, antacid and medicine alert list with me. I’m out the door with several bottles of water to keep my throat moist, to help me better swallow. Water is also my life line–keeps my bowels moving and my kidneys flushed. If my stomach spasms during all of this it’s back to the bathroom I go.
This whole process takes two to three hours every single morning. Every single day. For the rest of my life.
If I go out to lunch I can’t eat a salad if there are anchovies or any sort of seafood on the salad bar. I will go into anaphylactic shock. I can’t eat anything with gluten or I’ll be vomiting and or doubled over in abdominal pain within thirty minutes. I can’t eat a chef salad or any salad that uses prepackaged deli meats or chicken because the nitrates will trigger a migraine and or esophagus spasm. Every single bite I take is a gamble as to whether I’ll end up in the ER. I can not spontaneously go out to eat anymore. Unless I personally know the chef and or staff I just order water.
Every single aspect of my life is planning. Everything. When we travel it has to be within a drive able distance. The pressure from flying causes hemiplegic migraines which mimic stroke. When choosing accommodations I have to research what is closest to the ER. Which hotel has hardwood floors (less likely to have mold). Is there breakfast? Do they serve seafood? Can I get fruit? Can I bring my own blender? Is there a refrigerator in the room that can house my live probiotics? Do they have a walk in shower? Do they have individual heating and air units (mold and mildew) or central air?
I use the “around me” app to figure out where all public restrooms are in case I have bowels spasms. I try to locate a fresh market or whole foods within close proximity to our hotel enabling me to have access to safe food if I cant eat in the restaurants we are dining. If there are none? I don’t eat at all. If I don’t eat I can be guaranteed acid build up and esophagus spasms and a migraine. Not planning is not an option.
Your day probably consists of going to the gym or work. I go to physical therapy once a week to try and keep my muscles and skin fluid. Another session once a week to work out the fibroma tumors that are growing on the bottoms of my feet and wrap themselves in my fibrous tissue of my back. The following day is a weekly massage to work out the pain of the previous two day’s physical therapy. One day a week I have a pedicure and manicure to try and cut away the ever thickening skin on my cuticles. If I don’t do this? My fingertips split to the quick and my cuticles pull away from the nail bed risking infection. I usually have a doctors appointment once a month for chronic bladder infections, bowel disfunction and chest fluid.
I no longer drive out of town by myself unless a family member will be in the town I’m traveling too. Anything can trigger an allergic reaction or a stroke like migraine. Unless it is in town I have someone with me in a moving vehicle at all times.
This is my life. I’ve never shared fully the detailed effects of living with a chronic disease. But it’s important you understand, that no matter how bad life is, someone else is walking through difficulties as well. This has been on my heart recently. The national whining. The new it’s all about me generation. The political garbage of believing everyone deserves to be equal.
Guess what? Life is not far. It is not easy and it is not equal. Instead of whining? Ask God to show you how you can make the best of your circumstances. Get over yourself. What I’ve found these past ten years is that “why” no longer matters. “How can I make it better?” still leaves the focus on me. “What can I do for someone else?” takes me outside of myself. It allows God to do His thing through me.
I no longer can enjoy what you take for granted. I can no longer be spontaneous. I can, however, still bless those I love with kind words, planning, cooking, decorating and writing. There is no self pity. There is no longer anger (okay not completely true somedays I still whine). And, frankly, there shouldn’t be…not from any of us. Life is a gift. Each of us just live it out differently. Some of us unwrap it every day with expectancy. Others overlook the beauty of just being here. Whichever way you approach the package? It’s still a gift that He has graciously and lovingly bestowed upon us.
Ten years ago a sunrise or a sunset were beautiful when pointed out to me. Today? I seek them. I look for Him. They remind me that in an ever changing, complicated and confusing world God is still the same. He’s still in control. He knows the end game. There are no surprises to Him. He knows better than I what the purpose of all this is. He rises with me and ends my day. He is beautiful. He is faithful. He is my alpha and omega.
It is true I am, some would say, trapped in this body. Yet I’ve never been so free. He is the answer people. He is the answer.
“Faith tells me that whatever lies ahead of me God is
already there”-Psalm 119:165