Tag Archives: #lupus

Strep Throat…A Small Price To Pay To Have My Darkness Fade Away

What do you do when you want to write…but your mind feels blank…yet your heart feels weighted and heavy in a way that it needs emptying? I don’t know what to do with my feelings tonight…I am dealing with an illness (lupus) that has managed to completely wreak unexpected havoc on my body and mind, on my spirit and even on my home for that matter. And tonight (and many other nights, days, afternoons, mornings…I AM THOROUGHLY PISSED OFF! ) I am also confused and sad and honestly,  I simply and sadly feel as a person I am CHANGED.

I have always been an emotional person…a “feeling a lot”,  (perhaps too much) type of person. My ability to tune into my own feelings and as well as deeply empathize with the feelings of others has pretty much guided the course of my life. I am a psychotherapist by profession and I truly love my job, it is sacred and beautiful to travel with others on their own inner journeys.  However, right now,  I am definitely in the midst of some deeply painful shit…and though I have an abundance of dear friends, parents that love me beyond words, a husband who has been by my side for almost 20 years, two beautiful boys…tonight and so many nights as of late, I feel so completely and utterly alone.

I know, at least I hope, that  I will be able to  find ways to integrate these dark feelings in with the light…I will have to find ways to weave the painful shredded fibers in with the hopefully stronger, fabrics that make up relief and healing. I pray I find ways to ease the relentless questions of my mind, find a way to  stop the unending search for answers, the hows, the whys, the what the hells?  The what if’s?  Yes, those, “when the fuck did this happen?”  type of questions, the ones that I am sure may never be answered nor would they be particularly useful if even if they were. I mean do I really need to know…”Yes…it was that bug spray, that spray paint, that north wind that caused this disease to activate.”  I can’t turn back time and undo any particular event that may have contributed to this process…so it is just toxic to live there.

I have been having terrible nightmares as well…a side effect of some medication, in my opinion. So,  I feel infinitely more apprehensive this evening, in these late hours of the night.  Yet, as I nod off to sleep, quite literally, falling in and out of consciousness while writing this…I realize that my 13-year-old son has snuggled up next to me, his head leaning on my hip, his size 10 man feet dangling from my bed. (Now…this is not great since he has strep throat and a 101 fever) however, just for tonight,  I am willing to risk just about anything to steal what is sadly becoming…a more limited number of tender moments, the one’s that he used to offer up so freely and abundantly . Yet, tonight …on his own thirteen year old terms (which apparently could be a side effect of him being kind of sick and weak? HEY…I’ll take what I can get! ) Tonight…he is being generous with his snuggles. When he came in to say goodnight, he actually took my arm and said “mommy…I love you so, so much”…This unsolicited declaration is not common place anymore, so if that was the only moment, I would have savored it.

I am also realizing… just as I write this…that some of my heavy heart is also entangled in the thirteenth birthday of this beautiful boy. He is a May baby…just like his mamma. He is dancing on the cusp of crazy adolescence, while still hanging on a bit longer (thank God) to the threads that keep him my sweet little boy.

So, just for tonight,  I worry and grieve and choke back what feels like an endless supply of tears because it feels this sickness is stealing away parts of my life. The parts of me, that at no point and time, and I mean NEVER, NOT EVER… not one damn time, have I offered up for the taking!  These dark feelings try to grip me and drown me in sorrow, they try to take hostage my sleep and my inner peace. But on this night….I lay here in bed, with my laptop humming, my husband sound asleep to my right and my son somehow fitting perfectly into the small space that is left on my other side. All of a sudden, I feel acutely aware of the abundance of gifts in my life.

I am not as alone as I thought just a mere 20 minutes ago. How can I not  cherish the beauty of what I DO have? Pain and fear are making it all too easy to focus on what I don’t have.  While I fight and battle with this pain, this disease and all its unknowns, I begin to realize that there are a few things that I do know and I know them with absolute certainty!

My thirteen year old, the tough guy, the one who  drives me to the brink of insanity almost daily…the one who pushes every damn button I have and laughs as he get’s the crazy to come dancing and jumping right the hell out of me! My boy…the one who gets the reactions he had hoped as he encourages his younger brother to join in the game of  “let’s drive mommy to the brink and watch the show!” Yeah…that’s my boy.  However, for now… he remains snuggled up, sound asleep by my side. His breathing is a steady rhythm bringing unexpected reassurance about mostly everything in the whole world right now. You know what? I am thinking these days may be numbered and that kind of makes me cry even as I type this…Tears. So in this moment, I will simply cherish his sleepy, fevered head by my side, cherish it with every ounce of my being.

My eight year old tried to wrangle his way into our bed earlier and we had the “NO WAY” discussion because he is “too accustomed” to his sleepy mommy and daddy just caving and saying… “sure…come child, disrupt our sleep…because we are too tired and old to fight you off.”  So,  tonight…he stays tucked under his Spider Man Comforter, head nestled in Avengers pillows. The night is young at 12:19 am, so he may still find his way in, during the wee morning hours. But for now, it seems my heaviness, my darkness, is unexpectedly lifted.  I think it’s by this writing, it is by this process of letting my thoughts flow out into words, however poorly written, I just don’t care. Really, I don’t…They are out of my head and on the screen and I can’t help but feel a bit lighter.

I also feel lucky…or is it grateful? Yes, It is Grateful. Tonight I recognize that I have my struggles, my pain, my illness…but it is certainly not all that I have and is most definitely NOT all that I am. Chronic pain can try to steal the brightness from my life…but there is no possible way that it can know this secret…the secret that deep, pure and unconditional love is simply and fully immune to being stolen! It just can NOT be stolen by a thief and his cruel and stealthy ways. For it seems that tonight, I am veiled in protection, I am cloaked in peace. All by this little man who drives me to unimaginable levels of frustration by day…but on this particular night, he is the sweetest of lights. He is the thread weaving together the good and the bad. He is the integration between pain and freedom.

He may likely never know, how on this night…when I felt like all of my chips had been cashed in and the cruel “thief” known as pain tried to steal all of my good…that he was my protector…and that was just from being by my side, his unexpected snuggles and his drifting off to sleep. I listen to him breathe and I feel grateful and I feel blessed. I feel honored by his presence tonight.

I also feel like within 24 hours I will likely be infected with Strep Throat…which can’t be good when dealing with an f’d up immune system, but I feel like this…what’s a bacterial infection if not just a tiny price to pay? Payment for the precious snuggle and sweet, sleepy, unconditional love that is being so freely offered tonight. I don’t know if it’s the fever or the antibiotics or genuinely a boy just needing his mom…honestly, it doesn’t much matter, I’ll take it.

So thank you my boy…thank you for getting me out of my funk…and most likely giving me yours.

Advertisements

For Survivors…Some Lessons From A Garden

Lately, I have been spending more time in the evening outside with my garden…my plants, my flowers, the earth. I have a disease that is making it almost impossible right now for me to be in the sunlight.  I have been mourning parts of who I used to be, while fiercely trying to adapt…to acclimate and navigate what I may become. This is new to me and sometimes the grief is heavy.  However…there is a gift that seems to be an integral part of this painful process.  The gift is being alone with my thoughts (but not in a scary way…) I am in solitude, yet feel one with the earth…in my garden, in nature. Not in the sun…but in the quiet hours of dusk, through the stillness…through the quiet, gentle breezes…If I am able to quiet my mind and listen closely…I can sometimes hear the lessons being gently taught.

Lessons from my garden

Upon looking at a flowering bush that was all but  “dead” two springs past… The one I was being encouraged to  chop down and discard, and I ALMOST  conceded to, but did not, because…HOPE! This is what she whispered to me last night…(if you take issue with my plants metaphorically speaking to me, stop reading…like, right now…seriously… I won’t be offended. She had a lot to say! )

So She Spoke…

“Just because I “look” dead…does not mean I am dead!  Give me time. My own time. Not your time. Nor someone else’s ideas and pressures of time. Won’t you help me out a just a bit? I will have to do most of the work, (the really tough inner work)… but perhaps you can help brush away the dead leaves, the ones that are making it hard for me to grow. Might you even trim my branches? Just the ones that you know for a FACT are hurting me…for this will allow my other less fractured ones to grow even stronger. ”

Prior to this…She was hiding…resting…invisible…Branches barren and fractured, looking like there was no hope. In her own time, she became what she was supposed to.

“If it seems someone did not know how to care for me in the past or perhaps even harmed me by planting me in the wrong environment…maybe you can learn about how to help me take root in a new space. A space that might be more suited for what I need to thrive. However…once you help me move, it’s going to take me time to learn, time to learn about this new and healthier space. Perhaps… to even know I have arrived somewhere new. I beg you… Please, give me time to adjust, time for my roots to take hold…I am not used to being in conditions that are well-suited for my heath. I am not used to all of  this potential!”

“Just because It is good for me…and YOU know it’s far better…I will still need time to understand that I am really here…in a place with more favorable conditions for my survival.  In my own time, I may learn that sunlight and water and rich soil that is filled with nutrients, is in fact, better than the darkness I had  so grown so very accustomed to. I didn’t truly understand I was in the darkness, I even learned to like the darkness… don’t you see? I didn’t know my conditions were as unfavorable as they might have been…for they were all that I knew.”

“So my friend, just because YOU know it’s healthy and better….does NOT mean that I don’t deserve plenty of time to adapt and learn, on my own, HOW  and WHY it is better.  So please, PLEASE… don’t over water me just because I never had enough of it in my life. Give it to me little by little.  Don’t keep telling me how wonderful it is on this side…let me come to that on my own. Check on me from time to time, come and sit by my side every now and again.  You just might be surprised that although I may not be perfect (and who amongst us is?) and I may not always use or “appreciate” all of my resources like it seems the others do, Ya know…the ones that have always lived on this side of the garden? Even still…I will still grow. One leaf, one branch, one petal and maybe even one blossom at at time”

“And please remember this…winter will come again. The seasons will change, the ground will shift, the temperature and climate will not always be optimal for me. I will fade. I may be buried and I may even “look” lifeless. But as we know, it seems that things are just as they should be. And when that time comes again…just help me brush off the remains of  seasons past. Perhaps even honor those decaying leaves…for they protected me from the harshest of weather. Maybe, to you, they do not look pretty, but to me… those are the very things that kept me alive and warm through the storms.”

snowone

“Please don’t be discouraged by my reluctant pace or my damaged and misshapen branches or blossoms. Instead…Sit in AWE of my tenacity, my resilience, my remarkable ability to survive all I have. To have survived and still be counted amongst the living!  I am my own unique miracle. So THANK YOU…thank you friend,  for not giving up on me and for giving me the time and the space I needed to grow and to heal. It may not be how others would do it …but it is the way that seems exactly right for me.”

“I do like it here on this side of the garden and believe it or not…I am even teaching the others that were born in just the right place, a thing or two that they may need to better survive these harsh, unpredictable winters.  In return…it seems, they may be showing me a little something…like how to not be so very afraid of such an abundance of all of the things that I had always needed…but didn’t even know I had been missing.”

And That Is What She Said.

So…as you can see…we all have something to learn. Lately,  it is me being the student and nature being the teacher. And that is just fine. As long as we remain teachable and open, you really never quite know, from where the lessons will come from.

beauty

SLENDER LORIS HELPS WOMAN COPE WITH CHRONIC PAIN

2302025834

Because sometimes…after having a night where you wake up in pain that is indescribable at 3:46am, tears flowing in your sleep… for the 297th time in a year, Ya just need to open your eyes to this guy.

He is all like “What’s the problem? I am just the cutest f’n 8 month old Slender Loris (that’s it’s proper name).  I personally think we shall call him “Frankie…who you callin’ slender Loris”.

I love him, He makes me happy…Pain sucks hard. Lupus sucks harder…but Frankie, does not suck at all. So If you are going through it today,  whatever that means for you, I know it’s hard. You are not alone. I  promise.

But come on.

Frankie. He’s gotta make things even just a teeny bit better and that’s gotta count for something.

“KEEP CALM AND LOVE A SLENDER LORIS”

I am the queen of the “awareness ribbon”…

60ec83ea1dcf77b44f8f2437d3842b94

So…I don’t know if anyone else will find this fucked up or not, so I will just throw it out there. MAY IS LUPUS AWARENESS MONTH. MAY IS BRAIN TUMOR AWARENESS MONTH. MAY IS MENTAL HEALTH AWARENESS MONTH. MAY IS MY BIRTHDAY.

Let’s just throw all the cards on the table and say…is it some kind of freaky shit show of a coincidence or karma or fate or JESUS?  Is it a taurus thing?  BUT…I have LUPUS. I HAVE A BRAIN TUMOR…I AM A SURVIVOR OF DEPRESSION, ANXIETY AND TRAUMA (let’s not forget my ADHD diagnosis too) . I also happen to be a freakin’ clinical psychotherapist who continually advocates for mental health issues.

lupus

What the friggity FUCK May?  I think I am going to look at this like the universe has given me my own special month to kill as many fucked up birds with several colorful awareness ribbons.  (I mean of course they would have to be strangled, because the old “two birds with one stone” wouldn’t actually work in this scenario) But death by ribbon, with little birds might work. (people I am kidding, I love birds and ribbons for that matter)

I mean, I totally appreciate the awareness. It is in fact critical and shines a beacon of light and hopefully research and cash on these very real struggles. (not really my birthday part though… just to be clear)

But really…it’s honestly got me wondering what might have been in the water in MAY? This is the trifecta of some weird alignment in the stars in the 70’s.

Forgive me for sharing this quirky observation…perhaps it means NOTHING…but just as a PSA, It might be prudent  to just go ahead and check those damn ribbons aligned with your birthday.

(let me know if I am on to something)

And one more question…is it excessive to celebrate them all AND where the rubber awareness bracelets too? I totally don’t want to steal the fucking show?

But honestly. It’s MY MOTHERFUCKING BIRTHDAY. So doesn’t that give me carte blanche to just be a shit show of ribbons and rubber bracelets?

I think so…yes, I think it does.

6ef7a3cf7c727937c41fc8f703c058d1

LOVE TO ALL THE MAMMALS

AS I tweeted about Mother’s day…and lupus…and brain tumors and the plethora of things I live with (in under, I might add, twitters allotted character #) I ended my tweet with “love to all the mammas!!” Which, then in the total fashion of my life, posted as ‘LOVE TO ALL THE MAMMALS’.  By all accounts this kind of applies, but I suppose was not exactly how I wanted to “tweet” my mothers day story on perseverance and love. I Mean the struggle is real for the blue whale, the giant panda and even the common vampire bat. I can’t however forget the love for the sweet little snakes and mamma birds…I mean DAMN, they fly and vomit food to their babies. BUT. I sort  of just wanted to say “LOVE TO ALL THE MAMMA’S”.

In reality, I suppose my original statement was far more inclusive and I am just trying to support as many beings as possible…so yeah. Love to all my mammals (and reptiles, amphibians, birds…and the whole damn lot of ya).

Motherhood…it does stuff to your brain. (and I am not talking about my brain tumor…that shit’s benign…Motherhood, is most certainly NOT!!!)

Bottlenose-Dolphins