Communication epiphany…

Before I did a 180 with my life 5 years ago, I was a woman who was not good at communicating in my personal life. I was rather the opposite – super good at shutting people out. Straight up changing my cell number or just consistently ignoring people. And I truly don’t think it was personal towards anyone…I just didn’t know how to develop healthy boundaries & was so all over the place in many ways. I was being selfish, self centered at times…not caring how I made others feel.

Now, I would not say that I am a great communicator but a lot of my limitations are health/cognitive related. Brain fog is a big factor in my auto immune disease, Lupus, and it is increased by the heavy medications I take daily to keep my diseases from flaring (steroids, immunosuppressants in the chemo fam,&  etc.).

However, I have the deep desire to communicate, to connect, to be involved in my friends’ lives…to be present. The diseases I am afflicted with make it almost impossible to for me to be consistent, stay on top of things (except my meds-I am super compliant about taking my medications which is great) and communicate.

A tiny voice inside me is almost embarrassed to start blogging again after so many failed attempts to be consistent and so many times I haven’t been able to. But tonight? Tonight I wanted to talk about communication though I physically feel like crap-but want to start chipping away at all that I want to share with my family & friends…all that I want to communicate.

 

 

(in progress…)Dancing with ‘Royd’ on Christmas

I have been on steroids for four L-O-N-G years. We do this twisted dance routine, Royd & I. I take lots of him in order to breathe when my lungs are closing up (be it from pneumonia, my Lupus, or my Interstitial Lung Disease aka ILD), he saves my life, he stays with me for way too long, causes AWFUL side effects**, and way out stays his welcome. I can’t break up with him. Like major clinger status.

I manage to eventually wean myself & my sensitive lungs down to about 10mg of Prednisone/day and something will cause my lungs to flare and then I am most always hospitalized (for at least a week @ a time), given super high levels of steroids & multiple IV antibiotics, then sent home in a wheelchair since it causes immediate muscle weakness & atrophying. Our relationship is a complete yo-yo…we have done this EIGHT times in the last 4 years. I will think I am done with Royd, start to lose some weight, get some energy, usually start using my cane/walker (not wheelchair) then I just crash. And it sucks. Really. Bad.

Currently, I am on six times as much steroids as I was when I entered hospital. SIX times you guys…okay so to help give you an idea, most people are prescribed this type of steroid when they have bronchial inflammation, for example, but they are prescribed 8mg/day at a week taper down to 0mg. Well, I have been taking between 10-80mg/day for four years. That’s not good for your bod long term. I feel bad for me for having to even take the medication! Prednisone is commonly referred to as “poison” because it is just that awful of a drug. BUT, it works to help me breathe and apparently that’s supposed to be “good”…

Coming home from hospital on Christmas was WONDERFUL. Like really…praise you, Lord! He made it HAPPEN for His birthday and THAT is the kind of good, good Father we have.

I love celebrating Christmas and was so upset…deeply saddened, to not be home with my family. I think that in past year’s I would have been straight bitter about it & thrown a tantrum & just been pissed. This year, I was definitely angry & sad, but I was able to have a very unique Christmas experience getting back to basics…and spending time with whom I find my JOY. My peace. Jesus. I had a quiet eve with my TV, then books, then listened to old carols & hymns (thank you, iTunes & big brother) & read a wonderful narrative of the Gospel accounts that a dear friend took care to send me in hospital. Its so easy to get caught up in the minutiae of being hospitalized & the people that do or don’t reach out or the things that do or don’t happen; when the reality is you are just trying to get through each day & let your poor body recover & heal. It takes so much out of me to go through each hospitalization & takes more to get back up afterwards.

When Pip & I were growing up, I remember we had an inflatable brightly colored clown that you could sock in the face (oops…violent sounding, huh?) & it would slam directly parallel to the ground and bounce back up again. It was fun. Well, I am the clown and Royd body slams me repeatedly. And its not fun.

Since coming home last week, I really have had to psyche myself up to take my steroids every single time. My mum has stocked up on strawberry Mochi ice cream because its a long time obsession of mine…or I will sometimes treat myself to a coconut macaroon (my mouth is watering just typing this!). I love being able to look forward to something small, different, soothing on my poor cut/lesion filled mouth.

**Side Effects

Osteoporosis…I do have early signs of this but there sadly isn’t anything I can really do about it other than my daily Vitamin D + Calcium

Immuno-compromised…I am super susceptible to picking up any & every bug/infection.

*PLEASE AVOID COMING TO VISIT ME IF YOU ARE FEELING ANY SICK SYMPTOMS or SNIFFLIES. IT IS A WONDERFUL WAY TO LOVE ME PRACTICALLY! I SO APPRECIATE IT & YOU!*

-Joint sensitivity & joint pain…”Wait, don’t you already have that?!”…”Yep, yep I do”…

-Weight gain/fat displacement/”Moon face”: A literal medical term for how round steroid makes your face. It sucks and I am incredibly self conscious about it.

-‘roid rage…I am not an angry person usually, but I have a bad temper on high levels of steroids & its not ok. It really makes me feel like I am going crazy sometimes. I feel like such a bitch. Feel SO misunderstood. So moody. So not seen. And I know that those are not warranted, Searcy-esque emotions…its the damn steroids.

-Emotions…all the damn feels.

-Steroid brain

-Hormones

-Acne

-Inability to heal wounds

-Mouth pain/lesions/inability to heal or soothe

-Frequent infections

 

 

ch-ch-ch-changes

 

Never been one for making New Years resolutions…or maybe its just I didn’t stick to ’em at all so would rather not make them in the first place than have to admit I gave up within the day. Or the hour. Or the minute

…Lately, I have been reflecting on the fact that this adventurous illness has pushed me to have greater resolve to live each second dynamically. Life is more precious now than it has ever been in my life and I refuse to get caught up in the minutiae of my thoughts and psyche myself out of living. Thinking. Praying. Writing. Speaking. Being.

Life also takes more effort to just get through each day…some mornings I wake up & just can’t bear the thought of enduring another day. I count the hours until sleep. The pain just is too much at times…yet, it doesn’t seem to be going anywhere and has definitely settled in for a cozy, long winters nap so I need to find a way to have relationship with the unwanted visitor. I have lovely people in my life & very happy distractions-I desire to really embrace them.

So, 2016 will be a year of seizing every second. Embracing each painful and each not-so-painful day (celebrating those day(s) big!). Looking for the good in others. Extending grace. Rolls of laughter & tears. Living wild.

Galatians 5:22-23

{.reasons.}

Too much has happened in the last two and a half years…well, maybe the last six years…or is it the last nine years? Too many knots. I guess at every stage in life, one can look back and say “Wow! WHAT in the world just happened?!” or “WHAT was I thinking?!” or “How. did. I. get. here.” And-it is overwhelming! Too much to process, too much for the mind and our emotions to handle, too much pain, too much happiness, too much heartbreak, too much change (whether it be good or bad)…just altogether too much. This avalanche of emotions leads us to cut threads left and right, or unravel knots rapidly. Or make knots…and try to untangle them, yet end up so wrapped up within the knots we just want to scream. All this to say, I am learning to S-L-O-W down. Not everything is one of two extremes: black or white, yes or no, right or wrong, love or hate. So, in an effort to maintain/retain (or is it regain?) my sanity, I will start with today.

Today I hurt. Truth be told, everyday I hurt. I am sure people grow old of asking me, “How are you?” and hearing the same response of, “…today’s not a good day”, or “…I’m hurting”. But would you rather I would lie to you? And, if you would rather this-please just don’t ask the question. I try and not overindulge in my pain and dwell on it too much because right now there is nothing changing it but it is important for me to be transparent. I can lie quite well, unfortunately, about a lot of things in my life, but I am choosing not to do that anymore. So, back to today: I hurt. I feel ugly…more so than usual. I feel fat. I feel overwhelmed. I feel defeated (although I KNOW I am not).

Let’s break it down. (be prepared for lots of health details)

I hurt because…

1. That is the nature of my diseases.

2. My body is going through withdrawals from steroids (my dosage was recently cut in half in the hopes of cutting down the detrimental side effects the steroids cause to the rest of my bod). Withdrawals suck.

3. I had melanoma (skin cancer) removed from my lower back three weeks ago and my bod takes so damn slow to heal that I am still puffy around the surgical site, stitches still hurt like crazy, and I am just plain sore.

4. I have 5 Lupus lesions (bleeding/oozing) on top of my head still. Oh, plus 15 lesions on my shoulders and neck. And 1 on my face. I feel like a leper…

5. I had kidney stones last week (ouch!). Got to party at Cedars Sinai all night. #turndownferwhat?!

6. I had a cyst rupture on my ovaries this week causing an infection in my lower abdomen/intestine…spent a lovely day at Huntington Hospital (cool new ER, by the way Huntington!) getting IV antibiotics and pain meds. Sent home on a week of both. OH and this could also be a sign of Ovarian Cancer? Let’s not go there. That knot is simply too big for today.

I feel ugly because…

1. I hardly recognize myself anymore.

2. I don’t feel feminine (try having a buzzed head for the past 8 months and have people calling you “man, sir”, etc.). Wait-try having people say, “You look miserable; you should really get a wig and cover that up…” Yep-that happened.

3. My bod is doing all sorts of crazy stuff with itself on the external as well as the internal.

4. I don’t have the energy or UMPH to wear makeup. It simply takes too much out of me right now.

5. I feel so ugly internally from all these diseases and dislike the skin I am in because the skin I am in hurts and pains me 24/7. Never a moment without the reminder of how my body is deteriorating and dyin on me.

I feel fat because…

1. All of the above.

2. I have gained a ton of weight because of being on steroids and such heavy meds. I know women aren’t “supposed” to reveal their weight but, Knots&Threads is all about transparency…I weigh 210 pounds…that’s beyond the heaviest I have ever been in my life and it shocks me. But, weight is just a number and praise the Lord I have the medicine and food I need for my bod…imagine those that starve or are left hungry?

3. See above.

4. I can’t fit into any of my jeans. If you notice, I only wear sweats.

5. I love chocolate 🙂 and I am NOT givin up my chocolate.

I feel overwhelmed because…

1. I am! I AM overwhelmed! And anyone would be-we are not “supposed” to go through things such as this. We were not created to go through these things but for many reasons, disease & decay & pain & suffering & death exist in our world.

2. I am super popular with the Medical Billing departments of every doctor, office, and lab known to man (or so it seems. See what I mean about how I go to extremes?!) I am swimming in medical bills, absolutely swimming…or maybe we are at the point where I am drowning. Something needs to change ASAP.

3. See #2

4. Being sick is expensive.

5. I try and put on a brave face, I do embrace the brave-ness my Lord has given me…but I do fear for the future at times and what stunt my bod is going to pull next.

 

Okay…I am tired of unravelling knots of reasons for tonight. So, I am leaving the rest of the mystery & wonder until another day ;).

I will say this…despite all of the above…despite how I may have felt today, or will feel tomorrow, or will feel in five minutes…God is good and there is nothing taking that away.

He is good.

He is good.

He is good.

xo

 

 

 

. h. o. p. e.

Hope has been the theme of my weekend although at this moment I don’t feel “hopeful”. I finished a poem on hope today (see below) and yesterday I received a lovely gift from my sister-in-law (see picture)…a beautiful gold bar necklace with the word “HOPE” imprinted on it.

I would like to share the poem that my dear friend, Nathan Potter, and I wrote together. I have never really written a poem before (wait-do those haikus I had to write in 4th grade count?) and I haven’t had the desire to write one in my adult years. Nathan wrote the first part a couple months ago and felt led to give it to me…he said “Maybe one day you’ll finish it…” It has been folded in half in my Bible since then and I open it every once in a while and read it. I love what he wrote- I don’t know what he was going through when he wrote it but it stirred something in me that I couldn’t quite put my finger on until today. Today was the day I put my finger on it and explored this knot in my chest…the bittersweet knot of contrast in grief vs. hope can be a thing of beauty. For me, it is a thing of beauty when my feet are planted in my Creator. In Him, through Him, by His mercy, by His greatness…I have the confidence to place one foot in grief and one foot in hope. Grief that my body is failing me and physically pains me every minute of every single day…yet hope that one day it will be renewed and restored…confidence that one day all will be as it should in my Creator’s presence…no knots will exist then. All that will be is the gorgeous tapestry that He has woven.

Thank you, Nathan, for allowing me to compile this poem with you & thank you, Lord, for instilling in us the desire to create…

.h.o.p.e.

I sat with grief today.

Once mere acquaintances,

we have become old friends.

He is heartsick and slow.

I find it hard not to hate him.

 

But I know he is a 

fair-weather friend.

He will not travel with me long.

Hope reigns.

 

And where there is hope

grief cannot long abide.

There is a greater He than him.

He dissolves the bitter taste grief leaves,

grief is embraced yet not embodied.

I am embodied in Him who is hope.

He reigns.

 

He pushes away the cobwebs grief weaves.

Grief takes my breath away but He fills my lungs with life.

He is greater than him.

He is my hope.

 

My knots & threads disclaimer for you!

I have been told by many individuals that I need to start a blog…I “should” have started this blog years ago but I wasn’t ready and didn’t have the emotional capacity to do so. I am finally starting my blog (hip-hip-hooray!!!) but not out of “need” or “should” but this is something I am creating for myself out of WANT.  I am so pleased I have the desire to ~c-r-e-a-t-e~ something. I have never considered myself to be artistic or talented or to have something to write that people want to read. But, I have been feeling a deep stirring in my soul to start sharing some of what I am going through…transparency is a somewhat *new* and very important thing in my life. I have been convicted of how much of my life has been a lie at times and I have the deep desire to live an honest life that honors my Creator. A transparent one.

So, you can expect this blog to have a thick & strong thread of transparency. If I am hurting especially bad-I am going to write about it. If I am joyful-which there is ALWAYS something to be joyful about-I am going to write about it. In the spirit of transparency, I will share one of my fears in starting this blog…I fear that:

a– no one will read it (but seriously-who cares if no one does).

b– everyone will read it (but seriously-who cares if everyone does).

c– those who read it will grow tired of hearing me talk about my illness’ or think I am being a “drama queen”. I will talk in detail. I will cry as I write at times. I will fight the urge to hide it and I will be transparent in my suffering.

a & b I am not as concerned about as I am about c…yet even as I type this, I can almost hear God whispering to me gently that there is nothing to grow tired of. That this is a dramatic (traumatic?) situation. That I am not overreacting…that this is awful to be going through. That the pain is real. The struggle is real. But, that there is beauty in it-and who am I to care what others think? It is their (your) decision to read my posts or not. I am simply expressing myself and being obedient to document the amazing things my Creator is doing in my life in the midst of my body falling apart on me.

Don’t say I didn’t warn you. But, also, thank you for embarking on this journey with me. Thank you for reading my deepest thoughts & feelings. I pray you haven’t gone through some of the things I have-but if you have, you are not alone-and if you haven’t, maybe this will bring some insight and empathy or sensitivity to things you haven’t experienced. I know my experiences have taught me (and continue to teach me) SO much every day. And, I kick myself a lot for being an idiot and insensitive to people and things I knew nothing of in the past. But, that is just one of the knots that I am unravelling.

Life is full of knots & threads. So let’s start talking about them.

“God in heaven

holds

each person by

a string.

When you sin, you cut

the string.

Then God ties

it up again,

making a

knot-

and thereby bringing

you

a little closer to him.

Again

and

again

your sins cut the

string-

and with each

further knot God

keeps drawing you

closer and

closer

and closer

closer.”

-“grace” by Philip Yancey