This afternoon, my dear friend and I were talking on the phone about how her DH wasn't watching her child and as a result lost his phone in a toybox somewhere. As we were venting about how you need to check on the kids when they are being too quiet, I walked into the hallway to find suspicious footprints....
I proceed to walk into her room to be greeted with...
Worry....a simple word that so perfectly describes me ninety-nine percent of the time. A big cloud of worry. I worry about my relationships, about Mya, about Mother, about Ruth, about Husband, about the future, about the past, about the present....about my health.
I was talking to Mother on the phone the other day and she has been insisting that I request more tests to rule out "other possibilities" for my health situation. "Other possibilities" meaning Cancer. The doctor I have been seeing told me she is "pretty sure" it is Lupus, but said that there is no test for a conclusive diagnosis and suggested that I get another opinion. I have an appointment on Monday to see a different doctor.
I have tried to push the C-word out of my mind, telling myself 'It's Lupus. It will be hard but I can manage. I shouldn't worry too much about some of the weird results that the doctor got from my blood tests.' Then I thought 'Well, what are the symptoms of cancer, anyway? Are there generic symptoms or is it individualized into the type? What if you opt out of treatment?', so I did some research. Mistake.
Generic symptoms I found:
Lack of energy - check
Unexplained weight loss - check
Easy bruising - check
Lowered immune system - check
Slow healing wounds - check
Constant stuffy nose - check
Headaches - check
Aching bones/joints - check
It's a scary thing to think about for anyone else, let alone yourself. I'm trying not to go into hypochondriac mode and self-diagnose. On the contrary, I honestly don't think I have it. Its just when the possibility is brought up by a doctor, its a little terrifying and hard to get off the mind; especially for a worrier like me.
Not many understand how I feel. Its certainly not fun. My mind has been screwing with me lately. Sometimes I feel like I'm in the ocean and the waves are just pulling me under over and over again. It becomes hard to breathe. Little things will set me off into anxiety attacks. I heard the song "If I Die Young" last evening and cried thinking of all the possibilities. Other times, I feel like I'm completely overreacting and I have no right to feel this way...others have been through so much worse; maybe my being sick is all in my head. Then I wave the BS flag and re-validate my thoughts. I know how I feel and that's all that matters..... right?
The day before yesterday, we made the purchase I've been dreading for 3 years...Mya's first "big girl bed". I realize we waited a little longer than we probably should have, but my worrying mind just couldn't shake all the hazards of allowing her to have free roam. I think we may have waited even longer if she could have managed to not somehow entirely knock down one of the walls on her crib...I think she was trying to tell us she was over this little kid crap.
The first night with the bed started out horribly. She kept getting out, screaming like a crazy person and violently flailing her limbs when I put her back. On the 5th try, she finally gave in and slept all night long. "Nice", I thought. "I can do this! This was way easier than I thought."
Last night was a different story. Putting her to bed was reasonably easy. She wimpered a little bit at first, but went straight to sleep. This morning when I woke up, I found Husband and Mya asleep on the couch. When they woke, Husband explained that when he got up, he found her Pull-Up on the floor next to the potty. Some of my make up was strewn across the counter and his cologne bottle was missing its lid. He continued through the hallway to find that the baby gate we keep set up at night (blocking the living room and kitchen) had gingerly been taken down. Upon entering the living room, he saw that Mya was asleep on the couch naked. Her arms and face were adorned with some sort of mascara war paint and her cheeks were coated in a thick layer of blush. The television and ps3 had been turned on. We're assuming she tried to find Netflix to watch Blue's Clues as that is usually the case when she gets the controller.
She was so proud and happy to tell me her recap of the evening's events. They went something like this:
"Mommy, look. She woke up and she pee-pee'd in the potty. She put make up on her face and on brinkles and squirts in an eye. Kitty in there and she slept on the couch and she watch Ploo Ploos."
Translations from Myan to English:
"Brinkles" - her word for eyebrows...not entirely sure why.
"Ploo Ploos" - Blue's Clues
She - doesn't neccessarily mean "she". Mya tends to refer to herself in third person.
This bed thing may prove to be exactly how hard I thought it would be.
I had to have more bloodwork done today and husband had to sleep (he works night shift) so I brought Mya along for the adventure. What could go wrong?
We got to the doctor's office to get my form to bring to the lab and she decided the waiting room was not feng shui enough and began rearranging. I gave her a pen and piece of paper to occupy her and avoid any further havoc while we were waiting. She decided that the guy sitting across from us filling out his forms needed a smiley face on his medical record.
We finally managed to get the form and shove off to the lab.
Upon entering, the first thing I noticed is that they expected us to wait in a 7x7 room packed with about 10 chairs. That is challenging enough for a toddler. Now, add 8 ladies and 1 man all over the age of 97. Once the cheek-pinching and oogling was done, we managed to sit down.
I suppose the lady next to me was uncomfortable with silence so she pointed out how "godawfully ugly" the paintings in the room were. A little more silence...Not satisfied with the lack of reaction she received, she leaned in to me, nodded to the one man in the room (huge bald guy with a beard to his belly button) and said in the softest voice I believe she could muster (which was not very soft at all) "You don't see beards like that anymore do ya?" I laughed nervously... More silence...
In the midst of the silence, the old man was involuntarily emitting small "mhm's" and "mm's". Mya began to echo them. "Mhm" "mhm"..."Mm um mm" "mum mm mhm"... for five minutes, this is what everyone listened to. My anxiety level had just about reached peak and Mya's was climbing. I checked our name on the list, still 5 people ahead.
We left. The lab work can wait. My sanity cannot.
I'm so tired of waiting to be told what I already know.
There are so many aspects of my life that this statement pertains to, one of which, my diagnosis of having lupus. I've lived with SLE for a while now, I just didn't know it. Now that I know what it is, all my symptoms have validity. Feeling like a 90 year old trapped in a 24 year old's body...getting exhausted sometimes after performing some of the smallest tasks....my hair coming out in chunks...the list goes on. I have always attributed these things to being lazy or stressed. I was always embarassed of these things because, let's face it, its not cute. I have always hidden these things from everyone, including those most important to me. I don't want to be seen as "the sick one". I am a walking paradox....I don't look sick. People don't see what's going on inside me. They don't see the physical symptoms other than a light butterfly rash across my face. They don't see that when I am going on about my day, I constantly wonder about how long I will be around for Mya and what my quality of life will be 5 years from now.
I realize that I am blowing things a little out of proportion. I realize that most people with SLE live almost normal lives. I just need my time to blow things out of proportion. I need my time to sort things out for myself.
Yesterday, I was in the kitchen enjoying a nice cup of coffee looking out the sliding glass door at the beautiful day at its prime. I was contemplating the tasks of the day when, in a Little Miss Muffett-esque scenario, a spider descended onto the window just in front of me.
Let me pause to clarify that spiders absolutely terrify me.
So I'm keeping my eyes on the spider so as not to lose it (I'd much rather know where it is than be suprised again) and I'm trying to carefully strategize how to get rid of it, all the while emitting some sort of high pitched noise that must have alerted Mya to the dramatics ensuing. She came over to where I was standing and looked at me. Hi mommy. She proceeded to trace my steadfast gaze to the eight-legged monster. Ewww bug. Splat. She had high-fived the irachnid into oblivion. Feel better mommy? I'm not too sure, honey.