Two Roads.

Two roads diverged in a yellow wood, And sorry I could not travel both And be one traveler, long I stood And looked down one as far as I could To where it bent in the undergrowth; Then took the other, as just as fair, And having perhaps the better claim, Because it was grassy and wanted wear; Though as for that the passing there Had worn them really about the same, And both that morning equally lay In leaves no step had trodden black. Oh, I kept the first for another day! Yet knowing how way leads on to way, I doubted if I should ever come back. I shall be telling this with a sigh Somewhere ages and ages hence: Two roads diverged in a wood, and I-- I took the one less traveled by, And that has made all the difference. -Robert Frost

Wednesday, March 28, 2018

When being healthy doesn't keep you healthy

Many people know that this weekend I ended up in the back of an ambulance. This is shocking for a lot of people, but those who know me, know it is just a side of my lupus I usually keep very well hidden. The circumstances surrounding this weekend though made that impossible. 
It is a running joke that people with chronic illnesses fake being well more than people assume we fake being sick. I remember the EMTs telling me in the back of the ambo, "well if your face didn't give away how much pain you are in, your stats definitely do."
I have been asked questions about it so I decided to just write a blog post. This is something that I fight constantly: deciding what to share and what to keep private. If it had been a private incident I would probably choose to keep it that way, but so many of you showed love and concern about what had happened.

Almost a year ago to date, I competed in a beach volleyball tournament while at the tail end of chemo treatment. It was physically challenging to say the least, but mentally I felt nearly invincible. As my women's partner and I placed 5th overall and my coed partner and I pulled out a first place win I look back still stunned at having made it through.
( Read about it here:April Tournament 2017)
To most people, competitive sports are just that, sports. A fun athletic activity that is an enjoyable hobby. For me, continuing to play volleyball is about so much more. It might sound cheesy, but in a way, it is my way of clinging to a stubborn grasp of control over a very uncontrollable situation that is my lupus diagnosis.
Ever since I completed my last chemo treatment last April, I have been working to regain my strength, stamina, and rebuild what I can of my body. It hasn't been easy. In fact, it has been quite frustrating. I remember what I once was. I remember how my body used to operate. I know I will never be that again. For most people, they get out what they put in. I often have to put in double or more to get half the results. Most decisions create a catch-22 result, but still, I go to the gym, I eat well, I don't smoke, I take my medications and supplements, all to try and win a foot race against a racecar.

This past weekend, I lost the race.

On Saturday I played women's doubles with a good friend of mine and then Saturday evening I played quads with three guys. As the sun went down it got chilly (by Florida standards). In the quads quarterfinals, I had an annoying hip cramp, but I played through it and put on layers in between games. I had a collision with a teammate that left me with a pounding headache for which I took migraine meds and chugged water. In the finals, I had a calf cramp that turned into an excruciating charlie horse. After a timeout, some watermelon juice, and stretching we resumed the game and placed second overall in the tournament. I started to pack my things and then went to get my car to move it closer to load up. A good friend who was visiting for the day sent a message that I had forgotten to say goodbye. I got out of my car and went to say my goodbyes. As I was hugging him my back started cramping causing me to double over and then my leg. The next thing I knew, I couldn't stand up. As I was lowered to the ground my vision started getting fuzzy. I couldn't bend my legs or breathe because I was in full body cramp. I don't remember much.
I've been in the ER more times than I can count and my pain is always 9 or less. That night it was a hard 10. I just wanted the pain to stop. Finally, the fire department came. They put in an IV and pushed fluids.
As I was being put in the back of the ambulance, my left leg started cramping so hard my blood pressure shot up to 170/122. They were worried I would have a heart attack or stroke. They laid me on my side, packed my leg with heat packs and started squeezing the IV bag to push fluids faster. After 4 bags, an hour, and my blood pressure returning to normal they let me sign a refusal to be taken to the ER. (Once the issue was taken care of the last thing I wanted was to go to an unknown ER with doctors who know nothing of my medical history and would want to run a million unnecessary tests).
Sometimes lupus just doesn't want to cooperate. Sometimes your body just can't take any more. Around 2am I got in an uber and went home. I drank Pedialyte and ate potato chips as per the EMT's instructions while sitting on the couch with two of my best friends. And I cried. I cried that this had happened in front of people who only ever see me playing volleyball. Most of whom don't even know I have lupus. I am selective about what others see. This incident had taken away that aspect of control and I was once again in an uncontrollable situation. I know it could have been worse. I know I might have been driving when all this had happened. Instead, I was on the sidewalk surrounded by friends.
It didn't matter that I had done everything right that day and leading up to that day.
On Sunday I could walk so I went and played in the coed tournament. By the time the day was over I couldn't walk up stairs and when I woke up on Monday I couldn't get out of bed. Sometimes stubbornness contributes to the symptoms, sometimes it doesn't matter if you do everything "right".
Lupus has other plans.

Wednesday, February 7, 2018

When your chronic illness is boring

It is hard to believe that a year ago I was in the middle of chemo. The first half of last year is kind of all a blur. I have honestly struggled with this update because is kind of boring. Boring, when it comes to complicated health, is a gift, a good thing. Boring does not mean cured. Boring is just a slight lull in intensity.

Chemo is dramatic. It sounds dramatic, it IS dramatic. It is simultaneously destroying your body in an effort to save it. The side effects are dramatic. The reactions people give when you tell them the news, are dramatic. "OMG!" "Are you ok?" "What can I do? I'll do anything to help!" "You need to go to the ER?!" "You need to go to the doctor?" "Are you dying?!"

On an almost daily basis there is something that needs to be done, tended to, helped, fixed, supported...and then...well, ideally the treatment does what it was suppose to do. When that happens there exists this very tangible lull in the chaos of life. The types of friends who are only there in a crisis slowly drift into the background because the drama is now gone and things have become, boring.

What a lot of people don't realize is people who suffer from a chronic illness strive for boring. We want boring. I still have daily struggles, but the drama has ceased and it is now a game of maintenance and recovery. Frankly, no one really gives a shit about that. The thing is, we never wanted to be treated differently in the first place, it just comes with the territory sometimes. And now people don't know what to do. This is more my personal frustration. Recovery for someone with a chronic illness is not that same as a healthy immune system recovering from the flu or a cold. Trying to put back on the muscle lost, fixing the diet of what wouldn't be thrown up to normal food, dealing with BF% increase from the prednisone, are all very personal and quiet recovery struggles.
The time spent in treatment when you had to refuse every invitation to go out and see people have now created habits where people have stopped asking. One almost feels forgotten about. And not by anyone's fault. It is just the rhythmic nature of things. You see old acquaintances and they have become nearly strangers. People say things like, "I haven't seen you in forever," and you have to politely bite your tongue from saying things back like, "well, ya I was busy being injected and swallowing poison to keep my body alive, but it worked! So, here I am." Instead you say things like, "I know things have just been so busy, but it is good to see you!"

You aren't even mad at people because you are more grateful that the hell you just walked through had a less intense version on the other side of it. You are reminded that while your world consisted of medications, lots of naps, appointments with the porcelain throne, and bone broth everyone else's world continued to spin normally. Catching up is nearly impossible and so spoonies have to constantly accept that sometimes they are left behind. Sometimes they aren't even a part of the story in some instances. And that is ok because we survived another day, year, treatment, etc.

Monday, August 7, 2017

5 types of friends when you're a spoonie

Relationships are often times tricky to navigate. Whether it be family, friends, or lovers it is rarely a straightforward situation. Throw a complication like a chronic illness into the mix and things tend to be....less complicated?!
I know, it sounds crazy, but hear me out. Everyone wears a variety of masks in their life. Some are for different occasions, others are for different people, but often times they maintain these masks for years. When you have limited energy resources and are forced into incredibly vulnerable situations like chemo treatments, ER visits in the middle of the night, and medication side effects, those masks that others in society tend to put on, don't last very long.
Personally speaking, I will wear a "mask" for work functions, a night out, etc. but they are incredibly short lived. If any friendship/relationship is around long enough, they get at least a glimpse of the "real me". The beautifully, messy version of life. I didn't use to view this aspect of my life as beautifully messy, but the longer I learn to manage my asthma, lupus, chronic pain, etc. the less I am concerned with the capacity of others to deal with it as well.
Everyone has a different capacity of compassion, patience, and staying power. Most relationships are meant for a particular season in our life. Very few are meant to last forever. And that is ok. What makes this less complicated is that the personal dealings of having a chronic illness weeds people into more specific relationship categories a lot more quickly than if we were to have the energy to deal with everyone's "masks" and illusionary motives.
Some people can cross over categories, some people grow into others and others eventually fade away. Again, it is all ok. In order to help myself maintain a healthy mental state over all of the noise, I am learning to accept that it is what it is. So, let's break it down:

             This person usually means well, but their stay-power is garbage. Their compassion levels are usually high and they, in some capacity want to think they will stick around to help. But when push comes to shove, unless it is actually convenient for them, don't put too much stock in what they say. They may say YES to everything. If they surprise you in a positive way by showing up, GREAT! Just don't be disappointed when they don't.

            This person is a lot like the waffler, but deep down they really want to do the right thing. Just like above though, don't be too disappointed if they aren't available. These people tend to spread themselves too thin because they are good people, but terrible at managing their own time and energy.

3. The OVER and ABOVE
            These people are the rarest and when it comes to relationships. These people you don't even have to ask for help, they just do. They show up just to help you do your dishes or drop off food when you are sick. Even when you aren't having a bad day they still want to be part of your life. The bad thing about them is they will often not tell you when THEY are in need or let people help them either. A lot of chronically ill people can be like this on good days because they are trying to pay people back for when they are in need and there is a weighted guilt that comes with that.

           These types relationships tend to only be around when you are having a good day because honestly, the whole "sick" thing freaks them out. These people might even come pick you up from the hospital, but they won't go inside because of some past experience, or a personal phobia of all things "sick". Don't expect these people to be around much, especially as a chronically ill person.

            These people are ONLY around when you ARE sick. They will take you to the hospital and come help when you ask because you physically are unable to do something, etc. But when you are having a good day, they are just not around. This is because deep down they have some need to fulfill for themselves. They are able to pat themselves on the back that they helped you when you really needed THEM. They will tell you things like, "I'm sorry I couldn't make it today, but if it was an emergency then you know I would have been there." This relationship is selfish so be careful. These people care more about the pat on the back they can give themselves vs the relationship with you.

It is incredibly challenging to find relationships within our families, friends, and lovers that are balanced. Everyone (chronically ill or not) has good days and bad days. While every relationship is healthier with stronger levels of balanced people in them, as a chronically ill person, it is more necessary than most. We just do not have the energy to deal with those who are not willing to invest. Having something so life-affecting and yes, often burdensome, requires a different level of vetting in the people we choose to spend our time with. Some people realize the value of 4 quarters over 100 pennies with age, but we realize it through circumstances.
The goal in all of this is to find a healthy balance. Seeking relationships with people who have high levels of compassion, patience and staying power needs to be every spoonies goal. Letting go of those without those qualities is hard. We want to see the good in everyone because a lot of time we desperately want others to see past what we think are terrible flaws, which are our diagnosis'. When we finally realize it isn't about people loving us in spite of our diagnosis', but rather in the midst of them.
We are beautifully messy.

Friday, April 28, 2017

Lupus: It Really is Shades of Gray

Archie snuggling on my chest
Recently, I did a photoshoot with an amazing photographer and close friend of mine. (I will include links to his pages at the end of this). I just finished my last round of chemo a couple of weeks ago for what will hopefully be a LONG time, if not forever (insert tentatively sarcastic chuckle). These were not easy photos to take. I cried scrolling through them as I realized that this IS a part of my life. It has only been in the past few years that I have opened up about it to bring awareness. I felt incredibly vulnerable, which is not something that is very comfortable for someone like me. It shows a side of me and my life that very few people have ever seen. No makeup to hide the dark circles, no brushed and fixed hair...just me and my dogs. 
Air mattress snuggles with my pups

There are pill bottles on my nightstand for the medications I have to take before I even get out of bed, stacks of books with reading glasses for the tough days, loads of pillows and blankets to help ease the inability to control my body temperature and the joint pain, an air mattress in the living room for when I couldn't make it all the way to the bedroom, and a cane next to my bed for those particularly rough morning/days. All while wearing fuzzy Star Wars pants and a shirt that reads STRONG.

These are all variables in my life that can change on a daily and sometimes hourly basis. That is why people don't understand the amount of work that went into winning the recent volleyball tournament. (see previous blog post)
The recovery from chemo when it is being used to treat Lupus is an interesting one. You are battling the side effects of a drug that is supposed to eventually make you feel better. This round was a combination therapy with prednisone. Prednisone is a steroid used to treat...pretty much anything (...such as arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, and immune system disorders.)
Archie and Chewie cuddling

It also comes with a myriad of nasty side effects. (A few years back when I was in the ICU for my lungs, I was on such high doses of prednisone I had to take regular insulin injections because it was spiking my blood sugar so severely.) Common prednisone side effects may include, but are not limited to:

  • sleep problems (insomnia), mood changes; Yep, sorry for what I said when I was on drugs that made me unusually bitchy
  • increased appetite, gradual weight gain; #control 
  • acne, increased sweating, dry skin, thinning skin, bruising or discoloration; Because sweating is sexy
  • slow wound healing; With a nickname like Red Cross this is the last thing I need
  • headache, dizziness, spinning sensation; Whole lot of yep (although I suffer from migraines as well)
  • nausea, stomach pain, bloating; Because nausea from the chemo just isn't enough
  • changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist). Often called "moon face", also if I look puffy pretend I don't
  • low potassium I have had leg cramps so bad they have woken me from a dead sleep

There is a multitude of sites with usually several pages dedicated to just the side effects of this drug, but it saves lives, so there is that. 

Luckily, this round of chemo was via oral pills so, after several blood work tests, I got to do out-patient care at home. The comfort of home is immeasurable compared to a hospital room. I also have two pups that are the joys of my life to help me through each day.

I really cannot understand people who do not have a pet in their life. My Cavalier King Charles Spaniel, Archie, is 7.5 years old and I got him the same month I was diagnosed with Lupu

Archie snuggling with me on the air mattress
He was there through my first round of chemo back in 2010, multiple breakups, moves, good days, bad days, worse days and perfect days. 
He is calm and loving and has seen it all. He knows when I am hurting and somehow seems to find the perfect nook to curl up into next to me. He doesn't bark at all and he doesn't require much. He and I have spent several days curled up in bed together. Sometimes, I feel like I demand more of him than he does of me. I have already told him that he has to live forever despite the gray coming in on his muzzle and ears. 

My second pup is a 1.5 year old rescue that randomly came into our lives just over a year ago after being found with a broken leg on a freeway. Chewie's gratefulness as a rescue is displayed with his protectiveness of me and his playfulness with Archie. 
Sitting quietly. I was rather emotional in this photo
His sweetness never fails to cheer me up as he licks the tears from my cheek or comes to smoosh himself into the covers. 

These dogs have been such an integral part of each moment of recovery, not just in the past few weeks, but constantly as we overcome the frustrations that Lupus can bring. 

Kisses from Chewie, pills and books on the nightstand

Most people would never know that I quietly deal with this disease. For the most part, I like it that way. I would never want to be labeled as "the sick girl". I do what I can through diet, exercise, and natural holistic ways of healing and then when it is absolutely necessary, I am grateful for the modern advances in medicine. 
For the most part I have come to grips with this diagnosis. But, there was one day about 3 days after chemo where I broke down in frustration. I was tired of the pain, the vomiting and the mental reasoning that this is chronic. 
Archie is curled up on my his nook

I cried to a friend about how I didn't want to be sick anymore. He listened and did the best thing someone can do in that situation...just said, "I know". People always want to "fix" a problem when you vent to them, but this cannot be "fixed". It just IS. Learning to live IN that isn't always easy. I think that is what is so comforting about a therapy animal. They don't try to "fix" anything. They just live IN the moment with you. And whether you are happy, angry, or sad it just IS. 

I can feel myself getting stronger as I continue down this road. I go in for more blood work soon to make sure my numbers are headed in the correct directions. I am optimistic. I am a fighter. 

Flick & Shutter Photography - Facebook
Flick & Shutter Instagram 

Wednesday, April 5, 2017

Tampa Bay Beach Bums: Lupus Foundation Tournament

Shortly, I will be going through my third, and hopefully, final chemo treatment. I am grateful that this tournament was early enough in the month that I got to play before my treatment. Most people see the positive/healthier side of my condition. But this weekend my physical and mental resolve were challenged. To most people, it is just a volleyball game. For me, it is so much more. It is evidence that Lupus hasn't won.

My twin sister was in town for the event and it was so special to have her there. She has never seen me play beach volleyball before. 

Jenni and Me
After playing two sessions (all day) on Saturday and getting 5th place with my girl Jenni, I was completely spent on Sunday. Getting out of bed Sunday morning was rough, to say the least. My sister Kelli had to liquid band-aid the cuts on the bottom of my feet and tape my torn (and now very sore) shoulder. 
My twin Kelli and ME

Every inflamed and swollen joint in my body was screaming at me to stay in bed. During pool play, my asthma started acting up and we went 2-1. My lungs were on fire and all I could think about was letting my partner down

Me and Mark in pool-play

Our first game in playoffs was a fun, but competitive, game that we won 21-17. The second game we won 21-19. The third game we didn't realize had a cap (first team to 25) so we played and won 29-27 after having already (but unknowingly) won 25-24. Half-way thru that game, I didn't think my body was going to make it. I was sucking down air, my legs were dead and my shoulder was throbbing.

But my partner Mark gets it. He looked at me, put his forehead on mine and said, "I know you're tired and I know you hurt, but if you want to win you're going to have to suck it up."
Our next game we won 22-20 and then we were in the finals playing two fantastic players. As they pulled away 16-19 and Mark started cramping so bad he could barely move, winning seemed just out of reach. But then one point after another we tied it 19-19...and then 20-20. As I went back to serve my shoulder was at its worse, but then it was 21-20 and then....ACE! We won 22-20 against a strong team.

First Place with Mark Suter

I couldn't believe it, but the win gave my body permission to collapse. I was shaking and could barely walk. Mark and I had won the tournament honoring the Lupus Foundation and in a

I had to take the elevator in my apartment when I got home because stairs just weren't an option and I was pretty much bedridden for the next two days, but it was worth it.
Donations are still rolling in and I am so excited for the Lupus Walk on May 7th. Invite your friends and let's have a huge Beach Bums group!!!!!!
To register and donate:

Special THANK YOU to the Tampa Bay Beach Bums

Monday, February 20, 2017

Lupus...It's hard to talk about

Seven years ago I started down this journey, this thing...lupus. When I was diagnosed even the doctor didn't really sit there and explain much to me. Most of the knowledge that I have about this disease has been acquired through relentless reading, seeking and searching for answers. I acquired my love of reading from my mother at a very young age and I am blessed to say that insatiable thirst has never left. My one bedroom apartment looks like a small library as I continue to collect a vast array of literature several of which are dedicated to the seeking of answers to this incredibly frustrating journey, this thing...lupus.
Even after seven years, I still struggle to speak about lupus and how it affects me specifically. There is a thick guilt that comes with the association of each explanation. It is as if I am making some sort of excuse instead of just trying to explain the situation. Even speaking about it with certain family members is a no-go. I feel as though I should just "do better" or "try harder". I get side comments or off-handed suggestions that maybe, just maybe, I might be blowing things out of proportion. After all, I don't look sick.
Most people see the "strong" side of me. The side that musters up everything I can to hide the pain, the fatigue because that is what most people want to see, whether they admit it or not. That is what stays within the confines of their own comfort zone. The two or more days after, that it takes to recover...those I keep to myself. That way, everyone can stay in their lane of familiarity.
But lately....oh lately, it has been nearly impossible to do what I normally do because, for the first time since 2010, I have had to go through chemo again. Fucking chemo.
When I went through my first round in December 2016 I didn't tell anyone. I had just walked away from a job where I was miserable, so my stress levels were high, to say the least. And as I sat in the hospital chair being pumped full of poison, I cried.
What people don't realize is that all the masks that people with invisible illness choose to wear for the comfort of others, it takes a toll on their own well-being. The stigma attached to being "the sick person" in the room is real whether people will admit it or not. Not everyone is designed to deal with long nights in the ER, restless bodies in pain next to them in bed all night, strict and often frustrating diets, canceled plans, etc. Most people think they are, but when the shit hits the fan, very few people are left waiting in the wing. It is disheartening and outright heart breaking.
When I had my second round in January I at least got to do it from home and stepped out on a very narrow and scary ledge...I actually told a few friends. Telling people was almost as scary as going through the procedure itself. Would it matter? Who would show up? Who wouldn't? It didn't go 100% according to plan, but in the long run, it was worth it. The friendships forged through the experience have been invaluable. I now have two months reprieve before my third and final round. Hopefully, it will squash this wicked flare I have been sludging through.
My pride has been also put into check more than I will ever comfortable with. I am currently single and in my 30's and with that comes a high level of independence. Having someone help with the laundry because I have thrown up all day, or bring me food because just the thought of traversing the grocery store wears me out are all things
1) I have never had before 2) I am still struggling with because of pride.
That familiar guilt creeps in and I have not yet figured out how to just accept the help without it. Until then, I will cherish the friendships; the ones that really that matter. The ones that don't judge the uncontrollable situations and still choose to love me because lupus does not define me, or my purpose in this life, but it does effect it. It is a messy and complicated journey.
This thing...lupus.
But on May 7th of this year, we will join in the Lupus Foundation's Walk to End Lupus Now Event in Tampa Florida. I have set up a team under the link:
If you cannot join us in the Walk join us in the Fight Against Lupus by donating at the link above.

Monday, January 9, 2017