Sunday, January 24, 2016

Found My Hallelujah

I start all of my English speaking writing classes with the call and response: "I am writer, one word at a time. One word at a time, I am a writer." Yes, I stole this from my Catholic school teaching days where we often start retreats with "God is good, one day at a time. One day at a time, God is good." But they both just seem to fit so well and it makes sense. Like I tell my students, you become a writer by putting that first word down on the page, and then another word and another until it becomes a sentence, and then a paragraph and then a story and maybe even a book. As it is with life, though there may be many bad things happening to you or surrounding you, there IS some good in every day, even if the only good is your beating pulse and the next breath that you take. And so, I've also applied this philosophy to my illnesses, one symptom, one problem at a time. It makes things a lot easier to deal with.

So...without further adieu here is my health update...none of which I'm letting stress me out because there is so much more good in my life and so much to be thankful for.

2 surgeries, 4 mouth sores, and one round of Botox later...

Before Surgery...
1) Hysteroscopy D& C:  I had this done right after the Christmas holidays. Threw everyone into a frenzy when they heard the word surgery, but really it was a minor procedure. The worst part is always the after math of anesthesia. I won't go into detail as to why I had this done, let's just say my monthly friend has been quite erratic lately and I really need some answers yet but at least we know what ISN'T wrong (everything was benign).

2) Finger Surgery: Two weeks after the D& C I went back under to clean up the infection on my ring finger. Now, I know what you're thinking...will this poor guy end up like the last one?? :O Truth is, maybe...maybe not. I have a new hand surgeon now, Dr. Khorsandi...who is absolutely amazing! He says he will do everything he can to save this finger tip and this procedure of getting rid of the dead tissue was step one. If this doesn't help it heal on it's own, then he wants us to consider a skin graft. That is a more complicated procedure, but would still help save my finger.

Going through this a second time isn't as traumatizing as I thought it would be. I still get down about it sometimes...the thought of losing another finger tip and what that might mean for my career as a writer...BUT...when I think about it some more...I realize that it makes my accomplishments that much more special and unique...that when people remember me they'll say "damn she did that with only the use of 8 fingers!" LOL...not only that, but my life will make a GREAT made for TV movie some day!

3) Botox- HELL. TO. THE. NO. So...I have been trying to get Botox injections in my hands for almost the last two years. Since I first started having really painful ulcers and problems with my Raynauds. But no one, not my rheumatologist or previous hand surgeon would do it. I found one vascular surgeon in town who was willing but he only had appointments like six months out and I was too impatient to wait so gave up. Well, one week after the finger surgery, I suggested it to Dr. Khorsandi, and although Botox for Raynaud's is not FDA approved, there have been a few studies that show improvement in the blood flow and I've had a few sclero buddies try it out and have shown improvement, so.. Dr. K had some Botox on him and we both decided to give it a go. He was eager to have me be a guinea pig and I was ready to try ANYTHING to help with the healing process. (The reason these ulcers get so bad is cause Raynaud's prevents good blood flow to the hands, thus delaying healing and increasing risk of infection..Botox shows promise of increasing blood flow)

BAD. IDEA. First off, the injections themselves were painful as hell. If it was that bad on my hands, why on God's green earth would ANYONE ever want that in their face?! I'll take the wrinkles thank you. Then, I don't know why, but I didn't sleep at all that night from excruciating pain in every inch of my hand. From my joints, to the nerves, to every muscle was in pain and tingled. I got up to go to work, showered, got dressed, got in the car and made it half way down the block when I realized I probably shouldn't be driving one-handed and in so much pain. Came back home and spent the day in bed literally in tears popping Vicodin and Tramadol that didn't do anything but give me nausea and make me sleepy. The pain persisted until about 24hrs post injections (3pm the next day!) Literally wanted to saw my whole hand off.

How do I know it was the Botox? Because the day after surgery I felt fine! No pain or tingling. I went to work, baby sat, went shopping etc. I was fine every day with very little discomfort UNTIL I had those injections. Today, 5 days after the Botox, and I still have moments of terrible shooting pains in my fingers and hand. I don't care what Botox can do, it's not worth it. I will keep taking vitamins and saying prayers and meditating for it to heal on its own. Botox is for the birds! I do have to admit though, that while my left hand continues to turn purple and blue, my right hand has not recently... but it still hurts.

4) Mouth Sores- Yep, they're back. Painful and annoying Lupus mouth ulcers are back. Maybe it was from the stress of two back to back surgeries. Maybe it's my poor sugar filled diet (I eat what I can, which consists mostly of fruits and carbs...veggies still make me feel ill). Maybe it's cause I decided to lower my prednisone dose to 5mg without consulting my doctor.(I'm back up to 10 to see if they'll heal) Maybe it's all of those things put together. Point is, if I was afraid of gaining back the 18lbs I lost last year I can put those fears away. I'm back to eating small bites and soft foods until these things go away. I have two on my lip- one that turned into a bad chemical burn from me trying to remove my upper lip hair despite the ulcer (hey, I still want to look cute...a girl's gotta do what she's gotta do, and a mustache ain't cute even on a sick gal)..and I have two inside my mouth (which have started to heal thankfully). They are not as bad as the ones from last year, but still annoying.

5) Everything Else- I have NO idea how everything else is doing internally since I won't get any blood or urine work done till I see my rheumy and my nephrologist mid February. I DO know that I still have ZERO joint pain or muscle aches. I have a little fatigue but only when I do too much and my lungs don't hurt! I can sleep lying flat still and only have heart burn because of the antibiotics I'm on. I do think my eye sight is getting worse, but that's probably just from over use and not my diseases or the meds. I'm still infertile, as far as I can tell, and my blood pressure continues to play games with me. Sometimes it's in a normal range, sometimes it's stupid high. I've just stopped checking it since it stresses me out. The way I see it, if I'm meant to have a stroke, then so be it. I can't be bothered, I have things to do. :)

Basically, I have too many things to be excited about this year (grad school, writing residencies, conferences, teaching gigs, performances, publications, babies being born etc.) to focus on what these diseases MIGHT be taking away from me. Right now, it just feels good, good to be alive.

Tuesday, January 19, 2016

In Between Times

“After you find out all the things that can go wrong, your life becomes less about living and more about waiting.”
Chuck Palahniuk, Choke

There is nothing worse than the "in between times." Every chronically ill patient knows that. The time in between each appointment when the pain or discomfort is so bad but you know the specialist doc can't see you. The time between getting your blood drawn and waiting, and waiting for the results. The time between having the biopsy/MRI/CT/Echo/EKG/X-ray and waiting, and waiting for that dreaded call. 

As a patient, you learn the art of waiting. Waiting in the waiting room before an appointment. Waiting in line at the pharmacy for your meds. Waiting on the phone for the insurance agent or representative to fight ANOTHER claim. Waiting in the hospital room for the nurse and then the doctor. Right now, I am waiting to find out if/how my finger ulcer is healing. 

But the worst, the worst in between wait time for me exists in those moments after the doctor has told you something awful or less than optimistic about your condition and you know that you cannot break down in tears until you get to your car. You may shed a tear or two but know that "now isn't the time." The nurse or doc may be compassionate enough to hand you a tissue and place a hand on your shoulder, but you all know there isn't time for much more. So you suffer those agonizing moments where you fake a smile and tell the doc thank you as he leaves the room.  You then collect your pride and your belongings and head to the front desk where you pay and schedule a follow up appointment, smile again at the receptionist and swallow the knot in your throat. Then, as you head down the hall, avoiding your reflection in glass doors and windows, you think to yourself "not now, not now." And you hold it in a little longer as you head down the elevator avoiding eye contact with everyone but small children. You pay for parking begrudgingly as you realize how much money you've spent just to hear such terrible news and that is where it slowly begins. 

The tears well up in your eyes and you cannot contain it any longer. The lump in your esophagus threatens to choke you. You clench your jaw and try to relax. You get in your car and you finally give yourself permission to fall apart. 

It's not a few pretty tears of lamentation, if you've held it in it's because you are expecting an "ugly cry." A beat the steering wheel, talking to yourself, FML "where's Adele when you need her" cry. 
And you do just that. You let the tears fall for yourself, for your aching body and for what is yet to come, but even this doesn't last as long as it should because you've already paid for parking and you only have "15 minutes to exit the building." So you collect yourself,  turn the car on, take a brief look in the rearview mirror at yourself and what lies behind you and drive to your next destination, tired and confused, but ready to move on. 

Friday, January 1, 2016

Believe & Decide

It is the mark of an educated mind to be able to entertain a thought without accepting it.


A couple of weeks ago, one of my Afro-Latina sisters asked me for help with a writing prompt she was working on. She wanted some of us to give advice to our younger self. Not our teenage or child self, but rather the person we were one year ago. For me, that was Jasminne at 30...when I expected, that simply because I was in a new decade of life everything would suddenly change and miraculously get better. Wrong.

The advice I gave myself when I responded to her post was mostly predictable, (follow your heart, things won't change unless you do, be kinder to yourself etc.) but one thing I wrote started to nag at me today (in a good way) on this first day of the new year as we all consider our future goals and reflect on the year behind us. The one thing I would tell myself, that I think everyone should think about or may think about at least once in their life is the following:

"Believe that your life isn't worth living, and then, decide not to take it."

Why does this matter? Why is it ever ok to believe that your life isn't worth living? Because I think that at some point in our lives we all feel this way, even if only momentarily. And we have to forgive ourselves for feeling this way, and allow ourselves to feel it. And then, make the empowering choice to not take it. To be on the brink perhaps of the thought or the action and then, take back control. When I decided not to take my own life that night at 3am, it didn't mean I think it was worth living it, I just finally realized that this was the one thing I COULD control. (Yes, despite all the hogwash about happiness is a choice and all that other bullshit..sometimes..people..let's be's not..and you are just fucking sad...and that's that).

When you live with chronic pain and illness, suicidal thoughts are real, very real. After all, who wants to live with pain for years on end? What kind of existence is that? Many of us feel that we have lost all control of our own bodies. Our bodies have betrayed us and there is nothing we can depend on. We continue to fail ourselves and our loved ones on a daily basis. Living becomes exhausting. Depression a byproduct of our physical pain and limitations (though many have tried to convince me that if I just changed my attitude my physical health would improve...this is where I would HIGHLY disagree with illness is not caused by my depression, my depression is caused by my illness.. don't get it twisted).

So, how do you overcome it? You decide, in that one crucial moment as you shake the bottle of pills, cradle the blade or the knife or the gun or whatever weapon of choice you have in your midst, that even if every organ in your body decides to deteriorate tomorrow and you can no longer follow any of your dreams, that you CAN and DO in that moment have control over whether or not you will take the next breath.

In 2015, I came very close to the end. But I stopped myself. I found a sense of reason deep inside and asked myself: what will this solve? who will this help? And though I had some pretty strong reasons and answers to those questions, I found something else inside me that decided this was the ONLY thing I was in control of, and I wasn't going to lose that too.

I don't claim to know what it's like to live with depression, anxiety, bipolar or other severe forms of mental illness for years at a time. But I do know what my life has been like off and on the last 8 years because of how my physical illnesses have affected me emotionally and spiritually... and my friends... "the struggle is real." The allure of suicide hangs in the recesses of my mind on an almost continuous basis, especially during times of agonizing pain and weeks of insomnia. But I've always found the mental reasoning to rationalize myself out of it. And most recently, I've realized that feeling and being healthier and stronger has alleviated 99% of my depression and anxiety and allowed only goodness and light to flow into my life. And no, I don't think it's the other way around. There's no chicken and egg metaphor here. Being in less pain has made me happier. Period. It has provided clarity and hope in my life where none used to exist. Because I don't fear or look for death and pain around every corner, bite of food, missed night of sleep, hospital procedure or pill I am now able to plan for and enjoy the present and the future. I have regained what I lost almost 7 years ago. Control. Or at least a sense of it. And though I have SO MANY successes and life lessons to be thankful for in the past year...that is the greatest gift 2015 and turning 30 gave me.

Most of us have the power and the mental capacity every day to stop living and breathing if we so choose, and yet we don't, and being in control of THAT (your mind and your choices) surpasses any other physical betrayal of the body. If you have the mental capacity to stop yourself from ending it all, then you have more than you'll ever need.