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

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
s.

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 chest..in 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 way...me.

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:
http://support.lupus.org/goto/tampabaybeachbums

Special THANK YOU to the Tampa Bay Beach Bums