Sunday, February 7, 2016

In Honor of Valentine's Day Part I

I know Valentine's Day isn't until next week, but this is really the only topic on my mind right now: how lucky I am to be married to Lupe. For so many reasons I don't have the time to get into, but mostly because being married to someone with a chronic illness is no easy task. (Being married to ME is no easy task, coupled with my chronic illnesses and you pretty much are achieving the impossible...so the husband of the year award goes to...!) Pretty sure any other type of man would've left me by now, and I actually wouldn't have blamed him. But not Lupe. And for that I am beyond thankful. (Don't worry I'm not going to spend the next page and half just gushing about Lupe, this is going somewhere...)

I am thankful for having a man like Lupe as my spouse because as I witness other couples struggle with their relationships when one of them gets sick, I realize how "together" Lupe and I are. Was it always this way? No, of course not. The first few years were hard. We had to relearn who we were as a couple with chronic illness as a part of their lives. We had to redefine roles and responsibilities and learn a whole new level of patience and compromise with each other that now serves us well. And our marriage is stronger because of it and I have become a better person overall too.
On our wedding day...

This week I'll share with you what I'VE learned as the "sick one" to help keep a marriage like ours going, next week...I will ask Lupe to be a guest blogger and share what HE'S learned.

So what does it take? Here's what I've learned:

For the spouse that is sick:

1. Sometimes you just have to: "Shut the hell up and do as you're told." Belittling? Perhaps. Degrading? Maybe a little. But is it almost always because your spouse wants the best for you? Yes.

This was a hard one for me to learn and accept. I was born stubborn (thanks dad). And I hate being told what to do (thanks again, dad). So in the early years when I insisted that I was healthy enough or strong enough to do something that Lupe knew would only cause a flare I fought him tooth and nail INSISTING that I could do it. I didn't want to let go of the life I knew, but he could tell that pursuing that life was going to kill me. He was only trying to protect me from myself.

This is also true of taking meds, visiting doctors, going to the ER, driving yourself when you're heavily medicated etc. Just listen to your spouse. They care about you, they want what's best for you and even if you feel "fine".... they might be looking at you and realizing "he/she is going to collapse at any minute and I need to do something.." so let them. Let them help you. Take the meds. Go see the doctor. Get out of the driver's seat (literally and figuratively) and just shut the hell up and do as you're told.

Trust me, this will save you unnecessary bickering and arguing which will only make your symptoms worse.

2. Don't let your illness consume or define you. I know, this one is especially hard to do. Trust me, it's taken me years to return to the things I loved and that really defined me, but you have to try. When you're in pain day in and day out it's all you can focus on, all you want to do is get better. But don't forget, that your spouse didn't marry your illness. (Even if you were sick when you got married) There is so much more to you than being sick and THAT'S what your partner loves about you, so try not to lose that.

Lupe and I reading poetry together
I'm not saying you should ignore how you feel or seek help or talk about your disease. But remember who you were and what you loved BEFORE you got sick and try to keep that in your life as much as you can. You will BOTH be better for it.

Are there things I can't or choose not to do that I once loved? Hell yes! I would give anything to be in a play again. But I know that I just can't physically commit to that anymore. So what do we do instead? We take the time as a couple to go watch plays and that fills me up just as much. It used to make me very sad that I couldn't do theatre anymore, I used to wallow in that which of course only made my flare ups worse. But now that I have found alternatives and can appreciate theatre without needing to be a part of it, I am a happier person and in turn our relationship is happier.

3. Check yourself and your emotions OFTEN. Before you yell at your partner for simply walking through the door or before you start crying about how they don't "love you enough" ask yourself the following questions:

A) Have I been in pain all day? or for the last several days? If the answer is yes, you're probably more upset about the lack of relief you've felt than at your actual spouse. So instead of yelling at them, COMMUNICATE. Tell them: I've been in pain. I'm frustrated. I don't know what else to do, can you help me try and solve this.

B) Am I mad at THEM or am I mad because I'm sick? Again, this comes with things you have to think about. Did they actually do something wrong, inconsiderate, rude, disrespectful etc? Or is the daily exhaustion of being sick just wearing you down? It's ok to cry and scream and break shit when you've just had enough of being sick. But let THEM know that that's why you're crying, don't direct your frustrations at them, that doesn't do anyone any good.
Dancing at a wedding

C) Can this be fixed with: food, water, sleep, my medication, a bath, working out or a song? This requires being very in tune with your body. Listening to what your body is asking you for and responding to that. Too often (and this still happens) I will snap at Lupe or have a mini meltdown simply because I haven't eaten enough that day and I just didn't realize it. Or because my body aches and I'm fatigued and all I need is some sleep. It's hard to be nice to people when your basic needs haven't been met, so before you engage in an argument, listen to your body and see if it's trying to tell you something. If, after all your basic needs have been met and you still feel the need to confront your partner about something, then do so...but I garantee you'll be nicer about it at least!

4. Let go of "normal." This is your new normal. Stop comparing your life and your marriage to everyone else's or to what the media says it should like. You only have sex once a month, or once every two weeks, or just not as "often as everyone else"? SO. BE. IT. Give yourself a break, you live with chronic pain for christ sake! The fact that it even happens is a miracle!
You don't go out on romantic dates or exotic vacation getaways? WHO CARES?! Does your spouse cook for you when you can't get out of bed, or pick food up? Then he/she still loves you. Does your spouse kiss you goodbye and send you texts or messages throughout the day to see how you're doing or if you need anything? Count your blessings!

On vacation in Denver
Of course I wish Lupe and I could be more spontaneous and take random vacations or have fun adventures more often. But we can't. Because for me to leave my house even on a daily basis I need a litany of things. From meds and mittens to ensuring that I can eat the food wherever we go. It's also hard for Lupe to even PLAN romantic things because truth is, I may not feel well that night or that weekend and so his plans inevitably go awry. But guess what makes us an awesome couple?

We've learned to just roll with the punches and LET IT GO. He romanticizes me by spontaneously bring me flowers and fuzzy socks when I've had a rough week. He knows when I need rest and does the difficult task of canceling all our plans for the weekend even if it makes him look like a flake. I am thankful that he knows when I need to rest and that he is able to take charge and make sure I get that rest.

5. Accept that yes, sometimes you are the patient and your spouse is your nurse....but that is only ONE of the roles you each have to play. This one is hard. This one sucks. But this one is so very real. It's hard to be in this position as a grown adult (especially if you're young) but you just have to accept what is. As a woman, I want Lupe to see me as sexy, desirable, pretty, competent, strong etc. When he's helping you take off your underwear to go pee as you drag an IV bag into the hospital restroom...well there's nothing sexy about that. But you know what it can be? Funny. Especially if he grabs your boob in the middle of it. And sometimes, laughter is all there is left. When the sexy ain't coming back, and when you don't feel beautiful because your partner needs to sponge bathe or spoon feed you, just laugh.

I have learned that even if I don't want him to be, there will be times in our relationship where Lupe will have to take care of me and I will have to let him. But I've also made a promise to myself, that in the times when I can take care of myself and I have the energy to be all of those other good things, that I will. Because he deserves that version of me as much as I do. I cannot let that Jasminne die simply because it's easier to.

The nurse patient relationship we share is one most couples who stay together for a long time will have to live through. It just so happens that it will happen more often for us, but we know better than to get stuck there.

There's so much more advice I could give, but most of it just falls into the "general tips for keeping your marriage alive" category. Things like compromise and communication, not leaving the house angry, finding intimacy, make time for each other etc. But the truth is, what ultimately makes our marriage work is the commitment we have for each other. We are committed to building a life together, to making each other happy, to being selfish when we need to and pursue our individual dreams to make ourselves happy, and to staying.

The best piece of advice I ever got before getting married was the following:

"It's harder to stay. Leaving is easy. But if you can stay, if you can fall in love with the same person over and over again, year after year and stay...then you can do anything."
While I was in the hospital...and I'm still completely in love with this face!

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...well...no 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.