Today is a hard day. Not in a spilled my coffee, yelled at my kids, stuck in traffic, late for work kind of way. More like woke in horrible pain from not really sleeping; ran to the grocery store because I only have my dad's car for a few more days; somehow touched something perfumey (could have been as simple as someone who used the cart before me having a stinky hand lotion on) and got so sick I could barely make it home; carried the groceries in and down the stairs even though I really can't do that anymore; stripped all my clothes off; showered and could still not get the smell out of my body; opened one of our two windows and the farm smell mixed with unknown sickening sweet floral scent brought me to my knees, fell in bed sick and weak; checked email and Dan wrote our one car has a rusted frame that needs fixed before we travel again to Maryland, cancelled Twixy's surgery to be spayed tomorrow; can't cry even though I need to, and it's only 2:20 pm kind of day.
For the first time in my life I have a name for why so many things in my environment cripple me without warning. It is called Mast Cell Activation Disease. I encourage you to link over to this research in entirety or just Google it when you have time, but I will hit the high points here. What I knew before this diagnosis is the fact I am exquisitely sensitive to even small amounts of chemicals. I now know mast cells discharging histamines and other compounds are the reason I develop a hot, red face, a racing heart, erratic emotional behavior, and a metallic taste in my mouth and PAIN. Even one simple exposure can leave me in bed and sick for days. I understand why taking a shower or washing my hair makes me sick. (I can literally taste the shampoo and soap I use, no matter how "unscented" it is.) I understand why someone's kitchen floor they swiffered a day ago can leave me breathless and running to the bathroom. . . I could go on and on. It also explains why living in this basement in a relatively new house built on what was farm land has broken down my body over the past 9 months to the state I am now in.
Mast cell activation disease comprises disorders characterized by accumulation of genetically altered mast cells and/or abnormal release of these cells' mediators, affecting functions in potentially every organ system, often without causing abnormalities in routine laboratory or radiologic testing. (This is code for "There is nothing wrong with you, your bloodwork looks fine, you are crazy.") . . . MCAD is first suspected on clinical grounds, based on recognition of compatible mast cell mediator-related symptoms and, in some, identification of typical skin lesions. The clinical presentation of MCAD is very diverse, since due to both the widespread distribution of mast cells and the great heterogeneity of aberrant mediator expression patterns, symptoms can occur in virtually all organs and tissues. Moreover, symptoms often occur in a temporally staggered fashion, waxing and waning over years to decades. Symptoms often initially manifest during adolescence or even childhood or infancy but are recognized only in retrospect as MCAD-related . . . Patients with most types of MCAD often initially enjoy symptom-free intervals interspersed amongst symptomatic periods. Over time, symptom-free intervals shorten, and finally symptoms become chronic with intensity which fluctuates but with an overall trend toward steadily increasing intensity. (This explains why people can only remember you looking well, active and healthy even though you know you have been VERY sick for as long as you can remember.)
When Dr. Tinkle explained that Mast Cell Disorders very often go hand in hand with Ehlers Danlos Syndrome (which makes total sense when you consider their origination in skin and connective tissue) , POTS (my next post will be about this additional diagnosis) and yes, ENDOMETRIOSIS. (Endometriosis is the insidious disease that ate away my female organs and bowel (This explains why endometriosis can continue to grow even after hysterectomy!) I felt like someone had turned a light on in a room that has been very dark for a very long time.
The above video explains mast cells, how and why they go rogue, and also details about some of the many symptoms. There are two additional videos in this series posted on You Tube that give even more details. I cannot tell you how scary but also relieving it is to have these experts talk plainly about the ways I have been feeling on and off for years and now chronically.
For so long I have gotten weird itchy skin lesions after showering. I have had IBS for a very long time which I now know is probably a combination of gluten intolerance and other food allergies exacerbated by mast cells. I have had what I always called "flash fevers", the facial flushing after being exposed to a trigger which could be as "simple" as stress, hairspray, a baby wipe, a flower or more complicated like foods which cause all kinds of anaphylactic symptoms such as my tongue swelling, throat getting tight and choking, rashes, etc. These food reactions seem to never stay the same so avoiding them can be very difficult. After I eat something that causes a reaction my stomach swells like I am six months pregnant. Every single place I have an incision also begins to sting and hurt during flares. (And that's a lot of my body at this point!) I have periods of tachycardia following a trigger. I have increasing brain fog which I always called "fibro fog". All of this leads to extreme weakness, fatigue and pain. It's disabling and no one can see it . . .
I planned to share more links and information, but it is now 8:06 pm, and I am swollen, shaky and done. Most days I push and I push through. I hit a wall before my Laney and Dan even get home, but I still try to make dinner, fold some laundry, call the insurance company, call the neurosurgeon, have a conference call about a claim, make a plan of action to appeal . . . you get the point. Tonight when Dan came home from what I'm sure was a long, hard day especially in light of the car news. His dinner was waiting. I tried to do laundry, but there was a load in the dryer still. And I tried to cry to get him to understand I am really finished. My face and body were screaming I can't do anything else. It fell flat because I can't make tears any more. I ask him to look me in the eyes. "I need you to SEE me." I know he hasn't wanted to understand my new diagnoses. He hasn't read the blog. He hasn't expressed any emotions surrounding it. I have heard him tell people, "Once we get through this next surgery we hope our lives will return to normal." (Oh how I hate that word.) He says to me, "I thought you were fixed." It cuts me like a knife. My decompression and fusion were damage control. My upcoming surgery is very much the same. This isn't even like a cancer you can cut out or kill with a strong drug and give a percentage of reccurence. (Sometimes if I'm honest I wish it was something that could take my life. I wish it was something people understood and wore ribbons for and told you were brave and beautiful for.) This is my body. This is my life. This is our life. I am not being defeatist or unbelieving in a God who can heal. I am a realist. My outward body is perishing. I get that. For the first time I am trying to positively look at the treatments available. I am understanding my limitations and the truly chronic nature of these disorders. I am willing to do everything I can to have the "best" life possible and be there for my family and give God the glory, but I may always be sick. I will probably always be sick.
Please don't email me about how my faith could be stronger or my attitude more positive. I don't even need you to see me. I humbly ask for you to look through this pain and the continued struggle of my family and I and SEE HIM. His promises are true. He will heal all my diseases. He will wipe away all my tears even the ones I cannot cry. My heart will perfectly look like His heart someday.
"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day." II Corinthians 4:16
Oh yes, and in all this mess I saw Him in a patch of sunshine falling across my "story quilt", and I was glad and grateful. He is good and His Grace is greater.
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