A Week in the Life

Sometimes, hopefully as someone who is not an over-sharer, I don’t know what to post on social media. And then sometimes, when I share the “real life” hard stuff, I get notes from people I don’t even know, thanking me for sharing it. So… today some sharing.

I had two long ER trips in the last 9 days. Days with throat swelling and chest pains, and a BP reading of 148/108 being something the doctors celebrated with me. (MUCH better than 199/130).

An evening spent sitting at the ER parking lot to test out a new mast cell stabilizing med, per my primary care’s orders, in case it caused anaphylaxis.  Because I had reacted twice to things given to me in the ER.  (the new med seemed to be a success so far! Prayers appreciated!)

Tracking the growing in of my grey, as I have decided to let nature have it’s way with me. Not everyone gets to grow old enough to be grey. I may play with fun highlights still, but I don’t want to dread having the sparkly white and silver show. It’s part of me!

I managed to teach almost all my students this week! (My daughter subbed for me for a few when I was at the hospital. I wore real pants for 2 1/2 days. Now I’m back to leggings. I’m toast. Hyperextended my knee due to the mcas flare this week. Just to keep it extra fun!

So now I head to Portland to pick up another compounded medication to the tune of $$$ because that’s my only option. I test it out in the parking lot outside the ER again. And my long suffering husband will sit and watch NCIS on my phone with me while I ride out the first hour of the med. (He’ll also drive me to Portland to pick up the med. We have the ability to turn just about anything into a date! lol)

Just a week in the life of MCAS.

I don’t share for sympathy. But more to help tell the stories of those like me, who can find it hard to put it into words. Who fear being seen as begging for attention, or complaining, or worse.

This is our life. We find our joy-moments. We have days when we are afraid to eat because we don’t want another day spent with an epi-pen in hand just in case. Or several hours of a day lost at the ER again. And then we nap off the benedryl and and find reasons to laugh with our kids. Right now there are a couple tiktok stations and some youtubes I go to to keep me laughing. 😉

I am tired, and emotional, and encouraged, and a little nervous with another med trial ahead of me. I am thankful for my new team who care to find a way to get up to speed with MCAS, hEDS, and POTS (or in my case, hyper-pots)

And I am thinking of all those like me out there. I get it. It’s ok to tell your story. Someone like me will see it, and send you virtual hugs. <3 We can do this!

Singing in the Dark: Loneliness

Did the pandemic create a loneliness epidemic as well? As someone who already created a lifestyle of working from home due to chronic health issues, suddenly my life felt more normal. Many people were now experiencing my everyday life. But there was still an increase in a sense of being alone at work, a sense of disconnection from the world, as we left home less and less to be around others.

Maybe, those of us who are often “singing in the dark” alone, have something to offer to those who are new to this type of isolation and loneliness. And the truth is, many people do not yet feel comfortable “getting back to normal.” There is a PTSD-of-the-Soul from this life season.

Manhattan, Concert, Solo, Piano, Park, Lonely, New York

This photograph really spoke to me. As a singer/songwriter, the last few years have felt this way… sharing my music, or my thoughts, to a distant audience,  people who may never notice/hear… but singing all the same.

Then suddenly, a pandemic hits, and everyone tunes in to the internet in a whole new way. Before it was distraction. Now suddenly it seemed more like survival. Those who have been singing in the dark were now being noticed.

People began to work harder to deliberately create connection via technology.  Something those who live in isolation have to do all the time.

And now, as we come out of the pandemic-life, it is time to begin healing. As a health coach, I have grown to realize the importance of connection, and groups, for real healing and lasting change to take place. There is probably a level of PTSD for most people from the last 16 months. There are unhealthy coping skills that have begun or returned, as we all tried to cope with the loneliness.

The cure for loneliness is connection with others. And the cure for many of these other habits is also connection with others. This is my goal as a health and wellness coach: to help people move from overwhelm to action, by providing a community in which to do the healing. This may be a community of two, when someone is not ready to open up to a group, or a larger group.

We need to find the people on the same journey we are on, and link arms with them, connect hearts, and begin the climb to healing. Instead of singing alone in the dark, let us raise a chorus together, and step into the light. This may be online. This may be in person. Or both. But it will be on purpose.

Finally….. a food list

Today I did what I have been putting off for like like two years…. I took the low histamine food list, the glycemic index list, the lectin/oxalate list, my allergy list, and compiled a “mostly safe food list” for myself.
When I met my new doctor, and she gave me some guidelines, she said with a shake of her head “I’m sorry I’m not giving you a menu!”
My reply with a sigh, “I know. I’m going to have to create my own.”
Second doctor to say “when you get this figured out, you’re going to help a lot of people!”
I guess that’s my fate. So….
Phase 1, create a list of foods. Done.
It took me 3 1/2 hours. But the Red Sox were on, and were totally kicking butt today. So that helped!
I will talk more about why histamine/oxalate/lectins and glycemic index lists were given to me to compile in a future post too! And I still need to make it prettier for sharing. Probably a little PDF in the future, including shopping lists etc.
No photo description available.

Dear Body: Resilience part 3

Dear Body,

You amaze me. Your ability to get up and go in the face of such odds is nearly superhuman.

I am sorry for pushing you beyond what is healthy for you.

Your very cells carry around the good and painful memories of our 45 years.

I am sorry I judge you based on appearance, without looking beyond to the real you.

You have protected us from countless pathogens we could not fight off.

I am sorry for being angry at you for the protective barrier you created for me.

This Falling world has put a toxic burden on you, and our trauma has been like fuel to the fire.

I am sorry I have looked at you in disgust for how you bore this battle.

You and I have grasped at ways to cope with all that has come against us.

I am sorry for what my coping choices cost you.

You have cried out to get my attention.

I am listening.

You have asked for help.

Help has come, and more is coming.

Thank you for how you have supported me, despite my treatment of you.

Thank you for getting my attention, so I could stop and make a course correction.

Thank you for your insight, and your instinct.

I want to work with you, and no longer against you.

Partners?

With love,

Me

See the source image

In Awe of the Human Body: Resilience part 2

The more I learn about how the human body was created to function, the more I am in awe. Truly, we are fearfully and wonderfully made.

I will admit I have not always felt awe for how my body has handled a myriad of health assaults… Lyme, mold, and resulting triggers of genetically predisposed MCAS, hEDS. I have not been thrilled with how my adrenals ran non-stop to cope with chronic stress. (They managed to go a really long time… until I burnt them out).

I have not loved how my infections caused my pancreas to trigger hyper-insulin production at times, in order to create more fat to store the infections in, in order to protect my organs. Also resulting in hypoglycemia.

Or its overreaction to things that don’t bother others… like perfume, scented laundry detergent, and hair spray.

Although I have resented some of these coping skills with which my body was formed, as I have resented resting during the long healing process, the fact is… my body has survived this chaotic onslaught because of these coping skills.

And so as I ponder the word resilience, I think about all that my body has handled, often without little deliberate support from me. And I see resilient as an adjective to describe my body as well. To describe my appearance. This body has “battle scars”, literal scars and systemic scars, that I am working to gradually heal.

See the source image

But I want look at myself in the mirror and see “resilience,” not weakness, or heaviness, or just exhaustion and burn out.

Perhaps tomorrow I will share the letter I wrote to my body, as an exercise in shifting my self image a few years ago. It resonates even more now, as I ponder this word others keep seeing in me.

Have you ever paused to appreciate your body’s physical resilience? Do you need others to help you see it? Reach out to me. You aren’t the only one.

 

Got Resilience?

I have had a few people comment on my “resilience” in the last few months. Then my husband used it to describe me today. It has had me pondering…

I definitely don’t feel “tough” most days. I feel physically weak most of the time. (Working on chronic anemia and adrenal issues not to mention my alphabet-soup-diangoses). I feel at times emotionally weak/overwhelmed. I occasionally flounder spiritually and have to get my feet back under me. Oftentimes with the encouragement of a fellow-lover-of-scripture’s assistance.

So definition 1 doesn’t feel like me. Definition 2 has my name in it. 😉

So I asked myself, regarding definition #2… What is it that causes me to spring back…to be flexible enough to be bowed down so low, and then bounce back? And in seasons where I was not very resilient, why not then? Why now?

Hope.

When I was not resilient, I did not have hope. 

Or when my hope was in the wrong things. I have had hope that, if I did all the right things, everything would get better. Circumstances would change. People would change. My body would be totally healed.

But we don’t control other people’s choices. We don’t have full control over our environment, or its affect on our bodies. We live in a fallen world. Hurting people hurt others. Even “the earth groans.” (Romans 8:22)

What allows me to bounce back, to lift back up, after being bowed low with heavy things, is hope. But hope, rooted in faith. 

Holding  Onto His Promises  Everyday

When I choose to remind myself of who God is, of His goodness…. to surround myself with others who will remind me when I am weak… to spend real time studying what His word says about who He is…. time talking to Him…. creating space in my life for all of these things… THIS hope sustains me. He is good. I will be ok, come what may.

Faith, that this life is not all there is. Faith rooted in my own testimony of His work in my life, and others.

And faith and hope that there are things I can do that make a difference. 

There is no perfect diet/lifestyle that cures all heal issues, but there are things that I can do, that can help me feel better.

There is no helping all orphans, but I can help one.

There is no helping all refugees but I can help some.

This belief is deep in me. It’s how I bounce back. It’s where my resilience comes from.  If you need someone to come alongside you, to hold this belief for you, this HOPE, when you can’t hold it… reach out to me. I am forming a group for women who want to do this for each other.

I’m in it with you. Sometimes it’s hard. Sometimes it’s easier. It’s definitely easier when you are not alone.

Tomorrow…. more on physical resilience. The human body is an amazing thing.

Subtracting by Adding

I talked yesterday about food change overwhelm, and diet fatigue relating to chronic illness. So today I want to share one of the first action steps that helped me to get unstuck. (And still helps me, if I end up stuck again).

Removing foods gets stressful over time. And it’s not healthy to just keep removing foods, especially as I was having to eliminate foods that for most people are considered very healthy. (Spinach!? High histamine. Strawberries?? High histamine). If we just keep removing foods, we lose important nutrient variety.

And sometimes, removing one more food, that is contributing to my overall inflammation, but not causing me severe emergency level reactions, felt so horribly depriving. I would put it off over and over again.

So I decided to start by adding to my plate, something I knew my body needed. Not to replace something else. Just to add something.  Sometimes it was a handful of plain lettuce. Sometimes a few pecans. Even a drizzle of a healthy oil over a food. Anything to up my nutrition.

As I increased my nutrition intake, adding to my plate, I found I sometimes ate less of the foods that were contributing to my symptoms. I didn’t crave them as much. But even if I did, I just added other healthful things to it.

If I looked at my plate, and tried to picture a balanced meal, what did I need more of? What was missing? It doesn’t matter to me, if it’s a culinary-appropriate addition, I just add it. In my coaching I call trying to balance the foods on the plate, creating the Magic Plate. Even just by adding to what is there.

If you feel stuck with making food changes your doctor is suggesting you make, have you tried to start by adding in some of the things your body needs, and see if other things possibly get subtracted as you go? It’s a win, either way as your nutrition will be improved!

The Overwhelm of Food and Illness

EDIT TO ADD: In checking the dates to begin blogging my health journey, it turns out it is exactly 4 years ago TODAY that I had my first conversation with this doctor I found who finally diagnosed me! What a coincidence I begin blogging this journey today!

For my fellow mcas sufferers, “losing foods,” is a very real fear; the list of foods your body tolerates can shrink frightfully! For my fellow spoonies, (people with chronic illness…. google “spoon theory”) special diets to help reduce symptoms are often a way of life as well.

My first special diet, an elimination prescribed by the first functional med MD I ever met, was around 2005. In three days my BP dropped to a safe range, and in a month I was off five medications. I was amazed at the power of food, and it was very motivating, and pretty easy to stay off the foods that were shown to be major health issue triggering for me (gluten and corn).

Years later, my health was spiraling again, and I tried other “healing diets” recommended to me, and found some improvement but never enough. I finally was introduced to the Autoimmune Paleo Diet by my Pilates instructor, and that made a difference. But then after a few months my reactions to foods increased, and I could not figure out why. (It turns out batch-cooking and eating leftovers all week is a no-no unless I freeze them. Leftovers are very high histamine!) Removing more and more foods from my diet was stressful, and not healthy in the long term. But I was having more and increasingly severe “allergic reactions” to things I had eaten all my life. Cashews sent me to the ER first. Sometimes I couldn’t even figure out what was causing the reactions.

Finally, in a Providential way, I ended up meeting a doctor  who knew a little (and went to great lengths to learn a lot more) about MCAS. Now the shrinking list of foods had a cause, and we began to work on stabilizing my body so that it would tolerate more foods. I eliminated high histamine foods from my list (tomato, strawberries, cheese, yogurt, and more), found some true allergens to eliminate (almonds, peanuts). This helped reduce allergic reactions, but my health was not going to be a quick fix, especially with finding Lyme/co-infections, parasites and mold illness also at play. More food changes would be required to help me heal.

Can you say overwhelming?

I was so sick, that despite having experienced radical healing from food changes in the past, knowing that making the new food changes that could help, felt like an impossible mountain to climb. With my combination of diagnoses, there was no one-size-fits-me food plan available.

So there I was, in 2017 , sicker than I had ever been, exhausted, able to work less and less, and needing to begin the healing work necessary. But without having the mental bandwidth to move forward.

No one could make these changes for me. No cookbook existed that fit my situation. I was the most sick-and-tired I had ever been.

I couldn’t do it.

I tried. I researched. I tried certain healing food plans/recipes and had severe reactions to them; crossed off more foods (ferments, broth, and other healing foods) off the list. But I couldn’t do the swift and thorough change like I had been able to do multiple times before. I had some improvement, but not enough. By this time, I had read multiple books on my diagnoses, I had even become a certified health coach. And I still felt stuck.

For a long time, I felt like a failure.

Then I decided: I would give myself grace for doing the best I could at the time. And I would do more when I could. I would work on other aspects of healing that didn’t involve food, like sleep, stress, movement, and mental health. I chose to reevaluate my thinking. I got a health coach to help me.

With my health coach the thought, “it shouldn’t be this hard for me to make these changes; I’ve done it before!” changed to: “making these kinds of changes, when no template exists, and I am so sick, IS really hard! What’s one thing I can do this week? What feels doable?” I looked at words like “should” and asked questions like “says who?!” I acknowledged how complex this healing process is, and would continue to be. I journaled, I had meltdowns about how unfair it is. I grieved. I tried some EFT. I grabbed hold of different phrases to repeat to myself to help me shift my focus, like “I don’t have to do it all today,” and “stay in the moment,” and my favorite: “let it be enough.”

Then, recently, I learned the term “diet fatigue,” applied to people with chronic health issues (as opposed to using it to describe people on the dieting merry-go-round trying to lose weight). Boy did this fit me. I was tolerating more foods finally (far fewer ER trips, less throat closing/borderline anaphylaxis reactions), and now I had to remove more? Even knowing it could make me feel physically better, psychologically and emotionally this felt like torture. “I can’t make any more food changes.”

The chronic sense of deprivation eventually had me giving up on making changes, and I was eating foods that I knew were contributing to my inflammation, could be flaring up symptoms. But if I had no severe allergic reaction to them, I ate them anyway. Took meds to compensate. All. the. time. I often ignored my newly diagnosed hyperinsulinemia. Instead of making deliberate choices about food, I was operating purely out of my emotions.

Eventually, little shifts happened. I decided to just experiment with new recipes, to be curious about how I felt when eating different foods. The ones causing me harm, I began to eat less. I started to want to eat to feel good, instead of just eating my feelings. I try to make a deliberate choice about what I’m eating (even if it will flare my symptoms), to notice why I want the food, and that I am choosing the fallout after.

It’s a journey.

And this is a long post!
So, to be continued… including recipes I have found, helpful resources and sharing the journey as I continue to experiment with how different foods make me feel. If you want to subscribe to follow along, there is a spot to the right.

If you are a fellow spoonie, have you ever hit a wall of diet fatigue? How did you cope with it?

 

 

 

 

Time…. does interesting things

Time flies when you’re having fun…..

Time heals all wounds….

Timehop became a social media thing….

A watched pot never boils… (IE focusing on the waiting makes it feel like it takes every longer)

Going through my memories-of-the-day on Facebook this morning, seeing pictures of our youngest before he came home from Haiti, something about time really struck me. This time of year, my time-hop is filled with pictures and posts about gotcha day, and memories of trips.

Image may contain: 2 people, people sitting

In all of the long, nearly-5-years process, I was agonizing about all we were missing because he was not home. God really used that time to stretch and grow my faith in Him and His Timing, and what does it really mean for God to “be good to us” anyway.

And as I went through pictures of birthday parties here at home, 6 year’s worth now! And trips to Haiti, I am struck again, as I was when we went to bring him home…. that the wait did not keep us apart. We knew each other. We had time together in his country of birth. And now it was time to take him home for new memories.

When I felt like we were missing out on history together, we were making memories. It’s not what I would have wished, to be separated for so long. But these Haiti memories of him being so little fill my time-hop just like the memories of him being home do.

We have a shared history. We have memories together going back to 2 years old, when he was wearing 18 months sized clothing. I bathed him. I put diapers on him for bed. I held him when he was sick. (God is so cool, I ended up being there to nurse him back to health. Pic above). It wasn’t all here, and there were long, way too long, stretches between visits.

But now as he turns 13, right after his 6th Gotcha Day, I see even more clearly, that we don’t have only 6 years of history together. I feel thankful that we have 11 years of history.

Time doesn’t heal all wounds. But hindsight is much closer to 20/20. God works all things for good, for those that are in Christ Jesus. (Romans 8:28)

 

Beauty

Flower, Life, Crack, Desert, Drought, Survival

 

Beauty    by Spring Gouette 

I see you wrestle through the heavy soil that holds you down

I see you parched for rain, then when it falls you fear you’ll drown

I see your shaky stem resist the wind, and bend with strain

I see your bud of beauty as you start to grow in strength

I see you shyly open up and let the whole world see

The beauty of the person He created you to be