Here's a quick recap of events:
12/20: Had a reaction to a gluten free, organic grain snack bar I'm accustomed to eating. Began restricting my food consumption to things I am most comfortable with.
12/21: Had a reaction to a small amount of sauerkraut, and a subsequent reaction two hours later. The latter of the two verged on an asthmatic attack. Began a mostly bone broth diet. Even broth seemed to cause reactivity. Likely had about 380 calories for the day.
12/22: My acupuncturist administered a "reset" treatment, which I seemed to respond well to. I had several servings of bone broth throughout the day. Probably 400-600 calories total.
12/23: Continued my broth diet and added ground turkey. Had dinner at a friend's house and brought my own. Didn't realize she had cats, which I'm allergic to. The load may have done a number on my system. Called it a night early. On the way home I felt my throat reaction intensifying. Dosed a caplid full of liquid Benedryl. Minutes later my body seized up. It was as if my insides were in a vice grip that was being tightened fully shut. I lost most control over my hands. My body vibrated intensely inside. My breathing became very labored. It felt like I my body was being overtaken by some outside force and that I wasn't long for this life. I urgently told my husband to take me to the ER, which he did. After about an hour the symptoms subsided and things calmed. I was released just after midnight. Had probably only had about 500 calories or so for the day.
12/24: My insides burned much of the day. I had no appetite. Continued on a broth diet. Could barely stomach broth. Had a couple hundred calories for the day. Flew my penniless brother into town to surprise my mom. He hasn't seen her in two years and who knows if she'll make it to next Christmas. I think my brother has Asperger's. He's so out of touch with other humans and/or extremely lacking in awareness. I am repelled by his energy. We are very much oil and water.
12/25: Continued on the broth diet, added veggie broth, which wasn't going down as well as the chicken and turkey broths. Felt super fragile all day, nervous I may have an attack. My husband spent the day with his family. My mom, her partner and my brother spent the day with our family. I spent the day with our dog. Had 200-300 calories max. We had a beautiful night, bestowed some thoughtful gifts on my mom and her partner.
12/26: Today I was able to eat solid foods again for the first time in days. Still have probably only consumed about 500 calories or so. Started feeling better. My bestie and her fiance paid us a visit and stayed for dinner. Just as dinner was getting underway, I became intensely short of breath to the point of being light headed and couldn't speak. Long story short I was able to recover, thankfully sans rescue inhaler, and I did so in solitude. I was absent at the dinner table with my family and dearest friend.
It's not normal to just remove one's self from a social situation, especially one in which one is hosting. At the same time, when my body screams at me, it's telling me to seclude myself and find peace. I was compelled to send the following text to both my husband and my bestie, just to give them the 411 on what was so for me at the time:
"Had a breath shortness episode, pushed myself too hard. The humid air (from oven roasting all afternoon) was not helpful. Resting my lungs, including speech. Easier to be solitary than have the added pressure to engage. Thank you for understanding. Will be back out as soon as I feel more steady. Love you!"
The darkest times often inspire the brightest spirits to emerge. As I was sitting in bed, focusing on feeling OK with the situation, being guilt-free about having to abandon a dinner we were hosting as well as not owning any weirdness around the social awkwardness of this, I heard a knock at the door. Bestie poked her head in, wanted to know if I was alright. Even that gesture helps clear the air, so-to-speak.
Bestie told me it was really mellow at the dinner table, they're all just enjoying dinner and conversation. As a juxtaposition, in that moment especially, my mellow was by definition so much different. Just relax, breath steadily, don't speak, calm ... In no way is that conducive to being in the middle of a social gathering.
Incidentally, prior to the episode, I had been busy with last minute mood preparations for our dinner as well as my own special brew (chicken bone broth with shredded chicken breast, white rice and salt). Things such as candle lighting, flower cutting, conversing on the sofa with our guests, etc. All very usual things, typically. I almost think because I'm up and about, looking OK, acting OK that people just assume I am OK. For the most part I am. My reality last night is based on the roller coaster ride I've been on the past several weeks, and these recent flare ups, the last thing I really wanted to be doing is all these very usual things.
After Bestie returned to the dinner table, I continued to eat my very basic soup. It was actually really good. Sometimes the most simple foods are the most appetizing, especially in my current state. My chest still felt tight, a little warm/hot, my breathing was still pretty darn short and my pulse elevated. All this was too much so for my comfort. Of course these acute moments are a double-edged sword. On the one hand remaining calm is most beneficial. On the other hand, how can one ignore one's body when it's practically screaming bloody murder?! Fight or flight response just does what it does. I do firmly believe meditation practice, over time, can help reduce the ill effects of innate panic mode.
I sent a text to my energist to see if she could help clear these troubling symptoms. Call it psychosomatic or what you will, shortly thereafter I felt my chest tightness ease and my breaths become little by little deeper and deeper. While not fully resolved, it was much more near normalizing than I was wondering whether would be possible that quickly. Bare in mind, I am very unfamiliar with these sensations and symptoms. Sure I've grappled with a little shortness of breath here and there. These more intense episodes, especially occurring so close together, have me on edge.
One thing I am noticing through these two years of chronic illness, I could do a much better job of maintaining balance. At the same time I realize praising myself for the work I have done is essential. What I believe happens are these somewhat elliptical cycles where I'll be feeling better, so I'll do more. Then I'll do a little more, possible a little more on top of that. Suddenly my body screams at me and forces me to slow down. Then I'm back to baby steps toward getting steadily back up on my feet.
For days and days I had pushed myself to run as close to 100 percent as possible, even though I'm not firing on all cylinders. My God I've likely consumed as many calories in the past six days I've had nearly as many calories as I had been typically consuming in a single day, maintaining a weight of 150-160 lbs. I've yet to weigh in now, and I know I've lost more weight I really didn't have to lose. It's a vicious cycle, one that I'm becoming increasingly aware of, thankfully. It's stating the obvious; the first step in solving a problem is realizing there is one.
Yes, I'm 40, and I've had one practitioner, my endocrinologist, tell me these numerous, alarming symptoms are likely just happening because I'm aging. Really. A person doesn't go from feeling fine and normal one morning, to feeling like their system is shutting down for no reason later that same morning. That was my body's big alarm wake up call to me one Saturday while vacationing in Mexico on the 10th day of the 11th month of the 12th year. I'm intrigued by numerology and know very little about it. I'm curious to find out if there's any meaning there. I digress ...
Short circuiting is something I had never expected, and especially being so far from home made it that much more alarming! I've been battling to fully recover my health ever since, having spent countless hours and thousands upon thousands of dollars. I've been poked, tested, analyzed, cleared, retested, had a tube down my throat, awaited lab findings (most of which were inconclusive), quizzed, questioned, have had to repeat my story countless times. I've completely transformed my dietary lifestyle, juiced, supplemented, gave up drinking (which wasn't too challenging considering how much alcohol triggered symptoms), reduced my workload, taken up mindfulness practice, Buddhist meditation and the list goes on.
The most recent anything that may resemble an underlying, treatable cause is elevated titers for two pneumonia microorganisms that may be fiddling with my autoimmune system. The foreseeable plan is to combat these critters as soon as I am well and stable enough. Only time will tell.
While I realize I don't paint the rosiest of portraits about all this, because quite frankly it has been horribly agonizing and at times down right frightening, I realize there are so many wonderful things coming from this. Two of the most important lessons I'm learning are:
1) Self care is essential and is absolutely not the same as being self-centered.
2) Never apologize for having to care for your health. Instead, consider simply thanking people for their care and understanding.
Definitely the school of hard knocks. I would have preferred to have stayed in college much longer than endure all this. Maybe. Who knows. Certainly this experience has had a profound impact.
My bestie came back in to check on me before she and her fiance headed back to her folks'. She peeks her head in the door and says, "You're not masturbating, are you?" I was sitting on the bed with my legs crossed, leaning up against the headboard with my hands placed in diamond gesture on my lap under the covers. I said, "No, I'm meditating, see my hands are in a traditional Buddhist pose, which is sort of like masturbation only no penis is involved." She just said "oh." We were of course just being silly with one another per usual.
She sat on the bed and got really real with me. I could sense the concern in her demeanor and see the worry in her eyes. Of course she lets you know exactly where you stand, which is mostly great (except when you're on her shit list). She told me she knows how much the stress of my mom and her partner and most of all the cancer battle are taking on me. I'm of course also very aware of this. Layered on top of that is having a highly agitating person in the house, one who even gets under my most patient husband's skin. Of course I'm having my brother here solely for my mom, certainly not for me.
Bestie called me out on how heavy hearted I am right now, and it's true.While this is in my awareness, I am numb, or I was numb. To be honest, as much as I know she was coming from the most loving place possible, it gave me the sense she was unaware how much I am aware of all this. Additionally, and this may sound odd, I am guarded about what goes into my conscious, subconscious and body right now as I've received pretty clear signals about being more mindful all around. Had an emotional release with Bestie. We laughed together. We cried together. This is one of the most difficult times in my life. The fire is intense.
She continued on: "Honey, I'm real worried about you.What you're facing right now is huge, monumental. The best thing you can do for yourself is focus on self preservation. We all want you here with us, so whatever it takes just do what you need to do. There's nothing happening between now and the new year, and you already do so much. You have total carte blanche to just rest and recuperate."
For some reason, even though I wasn't sure if it was a good idea to go there, I went back to before the beginning when this illness started. The first place I revisit is my very dearest Grandma's passing. How during her final days she was mostly not lucid. A few days before her death, which occurred on my 38th birthday, I paid her one final visit while she was still incarnate to get complete with her. Oddly, I almost knew what to expect when I walked in the door. The moment our eyes met we both lit up and beamed brightly. She called to me by name, my name, and continued smiling with her whole face (mouth, cheeks, eyes, the works). My aunt was feeding her yogurt. It was a sweet moment between them as well.
When my aunt had finished feeding Grandma the yogurt, we switched places. I sat by her side and took her hand. I gazed into her loving eyes and told her how much I love her. Each time I spoke she lit up. She really didn't have words at this point, it was actually really amazing she was able to blurt out my name. I pointed out we were both wearing my favorite color orange. She smiled. told her I was getting married. She beamed with joy! I asked her if she would be there. She very clearly nodded with affirmation.
As I paraphrased this story for bestie (she's heard it before, probably several times), my eyes welled and I expressed how much I loved this woman. I also acknowledged I cannot help but think that her passing was more traumatizing for me than perhaps I realized. It was within four months the first signs and symptoms emerged, which started with chronic low back inflammation. One day it was just there and stayed there. I actually remember the exact date, August 8, 2012.
After retracing my steps to now, I needed a boost. Switching gears I shared with bestie about how very happy I am for, her relationship and their newborn baby to be. I acknowledged what a handsome gentleman her fiance is as well as how kind and loving he can be; that we all have our demons. Her eyes also welled with tears. She said they're working on it. I agreed they are on the right path to building a solid foundation for a lasting relationship.
It was in this moment I realized this being supportive is what lifts me. It's one of my most important love languages. I've always loved quality one on one time with my nearest and dearest as well as exchanging about the most intimate details of our lives. Yet during this flare up time just resting seems to be the best medicine. Yet here I sit and share some of the most intimate details of my life, I suppose also while spending quality time with myself. I do enjoy this, not nearly as much as being a light for others or drawing inspiration from others' light face-to-face.
As bestie was leaving she stuck her head back in the door to say, "Remember, self preservation!" I smiled and nodded. The thing is, I am so well aware of this. I've been proactive about it, had coaching sessions about it, drawn all kinds of boundaries with those around me, most especially my mom. That's the most difficult.
My mom only sees that I'm standing, walking and talking, so therefore I must be well. Now that the wheels have fallen off before her very eyes, I think she's starting to get it. Even so, it takes so much out of me to initiate and maintain boundaries with her.
For example, I could say, "Hey, mom, I know you have a lot of questions about where things are in the house or about your financial affairs. I only have so many words each day and only so much time. Can we block out a few hours each week to sit down together and go over things together?"
Her usual response is to huff and abruptly say OK as if she's just been reprimanded or as though I'm being unkind. In other words, she just doesn't get it. She cannot enter a situation and evaluate whether it's an opportune time to interject.
Yesterday during my first of two more alarming breath shortness episodes, I cleared the lunch I had just begun eating from the dining room table and made a beeline for my bedroom. My mom sees me approach and asks me to look over her meditation techniques sheet and new medication info. I had no breath to spare, literally. I continued moving by her, calmly. Even if she didn't react, I could sense her upset. Then again, it could be my own upset in being unable to tend to her in the way I feel would be most loving.
The flip side is this sense of a no-win situation. Having my mom and her "partner" here started off feeling really draining. The constant questions, needing things, so many things (like eight rolls of TP within the first five days). Them having to have things a certain way. Being as accommodating as possible. Moving out of our room. Rearranging our storage and housing their belongings. Busting our asses to make things comfortable for them, and that still not being enough, mostly for my mom. Suddenly, everything I've pushed myself to achieve feels like nothing more than a life-draining failure. What am I supposed to do, NOT welcome my mom into my home?
After bestie left I felt my nasal sinuses had swelled. Perfectly normal, just wasn't sure how much this was going to aid in me recovering from breath shortness. My lungs felt a little more inflamed as well. The heavy-hearted feeling she declared I suffered, yep, it was there. This hollow heaviness in my chest I was well aware of and yet felt completely disconnected from and nearly powerless to release. So a short while later I followed her visit up with a text:
"Thank you for being my touchstone. We're surely soulmates, and I already know how much you know what an amazing comfort that is. To have someone who undoubtedly always wants what's best for you. I love you so much! Your light brightens the darkest of my nights. Thank you."
To which she replied:
"What a wonderful text. You mean the world to me and I will always be here for you. Hell or high water. Hang in there!! You will get through this. Self preservation!"
I had more to express:
"Cannot tell you how much it meant for us to connect tonight in the way we did. Though the circumstance be what it was, those were undoubtedly such magic moments. Holiday Treasure! Also, you get me in a way so many others simply don't. Because of you I always have the truest sense of companionship. Self preservation. AMEN - I just realized how sexist the word amen is."
She replied:
"I agree, very magical. I felt greedy having you all to myself but thought 'I'm not going to apologize for it in the way I'm asking him not to apologize for his heath.' Bestie presrvation! We will always have each other and I'm so lucky and thankful!"
I replied once more:
"Pssst ... You made it feel like Christmas! On top of that, thank you so much for your beautiful and thoughtful gifts."
She replied once more:
"You are so welcome. I really enjoyed tonight. True holiday spirit is taking time w/the ones you love."
There it is, one of my many silver linings, having beautiful, supportive people in my life who I love and who love me. Touching lives and allowing mine to be touched as well. I believe that is the true spirit of the holidays. Everyday can be a holiday when we surround ourselves with people who lift us.
Incidentally, I had a couple "ah ha" moments in the kitchen this afternoon. It has become increasingly clear in the last day I only have so much wherewithall. In fact, even after nourishing myself better today, I'm finding I'm having to conserve my breath and overall energy more so that ever previously. As such, at times I've been focusing on noticing and letting go of tension wherever I'm feeling it in my body and/or mind. I've been moving much more slowly, which is totally counter to the high speed/high efficiency personality I've cultivated. Hmmm ... maybe I ought not to have gone on that summer exchange to Germany.
In noticing this, how I've literally, physically had to slow down, I'm becoming more empathetic to my mom's "partner." He moves like a glacier. And he always seems to want to stand right in my path, especially in the kitchen. Rest assured there's a very clear theme here; patience. The man is 76 and starting to lose his marbles, which has likely progressed with the stress around my mom's cancer. Clearly he would love to be move nimble. He is doing the very best he can, and I could do much better in the patience department. I'm just a little lost finding it, and it's not like GPS can guide me there.
Spirit can. I see what a bright, cheerful spirit my husband is for them. How he perks up when addressing them, especially first thing in the morning. Funny thing is, I recall a time in my life when I awoke each day with oodles of energy, gusto and joy. Guess that's what a time most of us call our twenties. I am still optimistic I can connect with that side of myself again. Here I go again applying unneeded pressure. Though I see no harm in wishful thinking.
Going back to what my acupuncturist shared with me about the darkness. The only thing that can protect us while we're in it is to love.
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