Saturday, November 28, 2015

Back to Brevity

"If you would be pungent, be brief, for it is with words as with sunbeams–the more they are condensed, the deeper they burn." -Robert Southey

I think I have forgotten how to be brief. Which is a shame since it's the title of my blog. Some of you may have noticed that I changed the title from "Chronic Brevity: Living With Scleroderma" to just "Chronic Brevity." Why? Well unfortuantely because I live with more than just scleroderma, as you also may have noticed by now. But I didn't want to completely change the title and confuse people, so I just eliminated the sclero part. But as I stare at the title and review my most recent posts, I realize that I've actually been chronically long winded lately. The words just pour out of me and I feel like I have too much to say. It's a great feeling, no doubt, but it defies what this blog was originally about. 

Chronic Brevity was born from a Shakespeare quote "brevity is the soul of wit" and the play W;t, in which the main character is dying of cancer and all of her encounters with doctors and everyone are brief and she talks about how life is brief, and the best writing is brief etc. So...chronic brevity was born. It fed my need to share what I was feeling and put it down on "paper," it helped me feel like I was reaching out to others and helping them in some way, and it challenged me to say in as few words as possible what I needed to say. 

I want to return to that. I have spent a lot of time lately learning about the art of flash creative non-
fiction. It's a style of writing that requires you say what you need to say in 2000 words or less. I absolutely love this form since it allows me more freedom than poetry but doesn't ask that I create a whole narrative. I am drawn to this form of writing and I want to use my coming blog posts to experiment with it. I used to do this as a standard in the early years of this blog, but for better or worse, the harder the struggle has been, the lengthier the posts have become. 

It's time to be brief again. Do I have a lot to say? Yes. Am I inspired daily? Yes. But I can't let the words control me. I have to find a way to control the words. Say exactly what I need to say in the most concise way possible, like a doctor or a nurse, diagnose the problem and simply walk out of the room to let you process what you heard. Let it sink in, and then have you come back wanting more.

So, I start today with the topic of invisibility and the intangible.


We often do not understand or believe in the things we cannot see, feel, or hear or experience with our other senses. Yet, it is often those things that affect us the most. We cannot really feel, or touch or even see a 6 week old fetus, but if we know we're pregnant we can feel the greatest joy of our lives. And if we lose that intangible child, we can feel the greatest loss of our lives as well. 

It is often the memory of someone we loved that hurts us more. Whether they left us willingly or whether they were taken from us by death. We can no longer see them or hear them or touch them or hold them, but their memory often haunts us and prevents us from moving forward. 

Many of us believe in God or a god or some being higher than ourselves. A thing, a power, a being we have never seen, or touched but maybe only felt in our hearts during some high or some low in our life. We have a blind faith because it helps propel us into new directions even when we really don't want to. Simply because we believe that if God or the universe has kept us alive this long, then clearly we still serve some purpose. 

The same can be said about invisible illness. Like a friend of mine from high school used to say about water molecules in the air: "you can't see them, but they're there!" My invisible illnesses have plagued every aspect of my life, sometimes for the better, sometimes for the worst. Even when I feel great, move freely and have days or weeks of little to no symptoms my illnesses linger and live inside of me. Affecting every decision, guiding my every move, and controlling for me whether it will be a good day or a bad one. 

My illnesses are not tangible. I cannot hold them in my arms, touch them with my hands, or see them wrecking havoc on my organs. They have names and they are alive inside me, but to everyone else it's like a child's imaginary friend that you think is cute but don't really understand. But that doesn't make them any less real. I may be on the way to remission, and I may be having better days now than I've had in 8 years, but that doesn't mean I'm "better." It doesn't mean I've "gotten over it." It doesn't mean that I've forgotten all I've been through and the person it's made me. You wouldn't ask a grieving widow to "just forget" about her dead husband, and you wouldn't ask your Christian friend when they're going to "get over" the whole Jesus thing. 

You may not be able to see my illness, my pain and my suffering, and these days I may not be able to physically feel its effects, but I still live with the looming threat that at any given moment my body could decide to flare up and shut down without warning. And it is that intangible, invisible understanding that encourages me to not take one single moment for granted, to spend time with the people that I love, to only do the things that bring me joy and to love as deeply and as fully  as my heart can take. So in the coming weeks and months as I take the time to reevaluate my priorties, my goals, my career choices, and who and what I spend my time on and with realize that it is often the things we can't see or touch that make us who we are and change us for the better.

(587 words)

Saturday, November 7, 2015


“May your mind be infused with 'one' thought(concentration of mind)! May every action of yours be embellished by 'one' thought! May your resolution be 'one'. You, who are acting to the contrary, your disposition shall have opposite orientation.”- Athra Veda

I hope to keep it short today. I want to give you all on update on all health related things, so here goes.
I had both rounds of Rituxan infusions and everything went GREAT! I couldn't have asked for a better outcome. Although I still don't know if it's officially helped or started to reduce the kidney inflammation, I can say that I feel like a completely new person. I have had more energy in the last few weeks than I've had in years. The pains in my side from the lung inflmmatio (pleuritis) are minimal and only mostly at night or after a large meal, but still a lot LESS than what it has been. I don't really have any fatigue unless I over exhaust myself and my muscles and joints feel really strong. I'm also eating better/more and most nights I can sleep alright.

I'm still having some issues with my hands and fingers. The ulcers don't want to heal and my fingertips just feel really sensitive lately, even typing this hurts. I see my doc on Thursday of next week and will definitely ask him about it. But overall, as you can see I finally feel like I'm getting some much needed relief!

The Rituxan infusions were a piece of cake for me. I was able to bring books, my laptop, my phone, a few magazines and even a snack. The first infusion took about 4.5 hrs since they had to be sure I wasn't going to have an allergic reaction. And thankfully, I didn't. The worst part about it all was the fact that nurse couldn't find a vein so she had to stick me twice, this as you know, is not unusal for me. After about 10 minutes I actually just fell asleep, soundly! As you can see from the pic, those chairs are REALLY comfortable, so I just reclined back, wrapped myself in a blanket and took a two hour nap! I also think it was the Benadryl kicking in and the fact that I didn't sleep well the night before due to being anxious about it all. (They make you take Benadryl and a Tylenol before the procedure to reduce the risk of an allergic reaction and pain.) 

My mom and Lupe were there and kept me company. They had a TV in the room and one other patient. It was actually quite relaxing.

The second infusion was only 3hrs because they could give me the medicine more quickly since I responded so well the first time. This round went much the same. I took a bunch of stuff to do, and barely did any of it cause I fell asleep almost immediately. I did experience a few hot flashes after both treatments on the ride home but that was about as bad as it got.

For those of you that don't know, here is a little info on what Rituxan is: (I had some trouble getting insurance to approve it because it's not "FDA approved" for Lupus nephritis, but of course my amazing Rheumy worked his magic and made it happen- this requires a lot of paperwork on his part and a few phone calls on my end)

What is Rituxan? (

Rituxan (rituximab) is a cancer medication that interferes with the growth and spread of cancer cells in the body.

Rituxan is used to treat non-Hodgkin's lymphoma or chronic lymphocytic leukemia. It is also used in combination with another drug called methotrexate to treat symptoms of adult rheumatoid arthritis.

Rituxan is also used in combination with steroid medicines to treat certain rare disorders that cause inflammation of blood vessels and other tissues in the body.

Rituxan may also be used for purposes not listed in this medication guide.


So, as you can see, Lupus patients DO and CAN receive "chemotherapy." Everyone's eyes widen when I tell them this and they assume I'm going to lose all my hair and that I must be dying. Not. True. Rituxan along with many other drugs simply suppress the immune system, and since my immune system is attacking itself and over "excited" that's what I need to do and that's how these types of treatment help.

I am glad that it seems to be working and helping with my overall health. Next week I go in to see the doc, get labs drawn and find out what the blood work says. Hopefully it reflects how I feel! - All good in the hood! lol

I know that being in a good place emotionally and mentally helps with overall physical health, but I do feel like the reverse is also true. I feel better emotionally because I feel better physically. I don't think it's JUST the other way around as some would have you believe.

Regardless, although I am still leery that all of this energy and good health is only temporary, I will embrace it and enjoy it for as long as it chooses to last. Afterall, I've had some pretty shitty years and really deserve a break!

(Stay tuned for next week's post on Writing and Getting Wiser)