Here I am!

Sorry I have been missing! Olivia has been discharged from the hospital to go on a vacation we had planned before she entered the program at Johns Hopkins. I've been rushing to get things done for our trip, getting doctor appointments squeezed in, and meds squared away. Also, grad school starts the day after I get home, so it is in my best interest to get some things done before I leave.

My pain has been about average, but I have been feeling a bit uninspired lately. I think a vacation is just what the doctor ordered :-)

Groovy Chick Update

I made the sign to put in my car :-) It's pretty and groovy (just like me!) and has an RSD awareness symbol in the top right corner. It never hurts to get the word out...

disABLEd

I received a phone call today from my University, and it was about my favorite subject, the good ol' "disabled placard." *cringe* I need to acquire an additional disabled placard specifically designed for the university's parking system. It's going to be the only way I will be able to sit semi-comfortably in class after commuting such a long distance. I don't look disabled on the outside, but I am on the inside (but only by pain).

I am no longer disabled by fear, sadness, anger, disappointment, worry, confusion, low self-esteem, or the inability to express my emotions, my wants, my needs... especially to the professionals taking care of me. I am who I am. Maria. Ever growing, ever evolving, always loving, always living, committed to giving back.

What the hell does disabled mean, anyway? Unable to do X, but ABLE to do much much more. I'd rather my placard say "Groovy Chick With Chronic Pain." I think that sums me up better than "Permanent Disabled" on my placard or "Disabled Person ID" on my ID card.

Until I change the placard making process for good, I guess I will live with "Disabled," but don't be surprised if I add "Groovy Chick With Chronic Pain" somewhere on my car with loose leaf and scotch tape...

Pain Flare. Whoops.

Pushing it for a few days + Strengthening + PMS = Pain Flare.

It's very easy to push myself into a pain flare when PMS is in the picture. It's almost effortless.


The article, Effects of the Menstrual Cycle on Medical Disorders, written by
Allison M. Case, MD; Robert L. Reid, MD, recognizes the exacerbation of certain medical conditions at specific phases of the menstrual cycle. It also highlights the role of medical suppression of ovulation as a treatment for disorders that are affected... Speaking of, I just started the birth control pill, Seasonique, in the hope that suppressing ovulation for several months out of the year will relieve some of my pain and allow me to continue to be as functional as possible for the majority of the year. I'm crossing my fingers for this one!

I also found a text online, Sexual and Reproductive Neurorehabilitation, with a chapter named "The Role of the Menstrual Cycle in Chronic Disorders of the Nervous System." Should be an interesting read...

As for me today, I have a doctor appointment this afternoon, but for now, I am going to sit outside on this immaculate morning with some fashion magazines :-)

No Secret

Okay, so it's no secret that I am engaged! I like to call it "long-term engaged" since my boy love and I are planning on taking the next few years to finish school and grow and learn with one another (we have been dating for 5 years with a short break here and there). Soooo, here is the little beauty! I am overjoyed! I literally drew this exact ring for him in his school notebook 4 years ago and labeled it accordingly. I can't believe I have my dream ring and boy :-)

P.S. The middle rectangle is opal, with diamonds around it and on the base of the ring, too.

Much Better

I wasn't going to give up "mission capsaicin" that easily! I've told you, I'll do anything if it means the possibility of healing!!!! I decided to purchase the topical lotion instead of pouring out anymore capsaicin liquid onto my lower limbs, and it doesn't hurt at all! I guess I really did use too much, hehehe... That plus the Voltaren gel makes my legs a bit slimy by the end of the day. I have to lather up eight times before night falls, but I couldn't care any less. It's just part of the game that I intend to win!!!!! Go team Tough Cookie!!!!!

Ordinary Miracle

I feel better today :-) See, rough patches pass. Some may just be longer than others (*cough, cough* RSD).


"It’s not that unusual
When everything is beautiful.
It’s just another ordinary miracle today.

The sky knows when its time to snow,
Don’t need to teach a seed to grow.
It’s just another ordinary miracle today.

Life is like a gift they say
Wrapped up for you everyday;
Open up and find a way
To give some of your own.

Isn’t it remarkable?
Like every time a rain drop falls,
It’s just another ordinary miracle today.

Birds in winter have their fling
But always make it home by spring.
It’s just another ordinary miracle today.

When you wake up everyday
Please don’t throw your dreams away;
Hold them close to your heart
Cause we’re all a part
Of the ordinary miracle.
Ordinary miracle

Do you want to see a miracle?
ohh ohh ohh, ohhh ohh ohh...

It seems so exceptional
That things just work out after all.
It’s just another ordinary miracle today.

Sun comes up and shines so bright
And disappears again at night.
It’s just another ordinary miracle today.
ohh ohh ohh, ohh ohhh ohh...
It’s just another ordinary miracle today."

Capsaicin Is The Devil

Half of the response I fancy was bestowed upon me yesterday. I pulled out my laundry list of supplements, and then, I held my breath and asked, "Is there anything I am missing?" With RSD, I am always fearful that there aren't any more options left for me to take a crack at. He handed me a script for an anti-inflammatory cream to apply four times a day, and also told me the positive effects that over the counter Capsaicin has on nerve pain. He warned, "You may get worse before you get better. Just give it a few days." More pain? Okay, fine by me. What do I care at this point?!

Minutes before Shorter's obedience class, I franticly purchased Capsaicin fantasizing that it would relieve my pain for the next hour. Silly me, I picked the roll on applicator versus the cream and had to squeeze the liquid out to get it to cover both lower legs.. my first, only, and LARGEST mistake. I'm not quite sure if it's the RSD, the fact that I squeezed the entire bottle of liquid out, the capsaicin itself, or all three combined, but it felt and still feels 12 hours later as if I am burning in the fires of hell... and the fire is growing! I couldn't even sleep! In a way, I find it funny. Is that wrong?! Silly life.

Let's look at the positives here. Only a few more days of this torture before it may have some effect on my nerve pain, AND this is a great way to get me used to what I will probably feel like during graduate school. This may even be worse, so when I flare, I can always think, "Well, at least this isn't as bad as my RSD+Capsaicin disaster!!!!!"

Today, I am probably spending the day with the boy who gave me that ring ;-)... and Capsaicin!

I am off to McDreamy this morning (wearing one of my most adorbale outfits!) for the last post-op checkup and a hug. I scribbled down all the supplements I take, which looked more like a laundry list of things to do, to show McDreamy and ask him if I am neglecting a central piece of the remission puzzle. With my meds, I swallow about 40+ pills a day, but it's all in the name of a vibrant, painless future. I am anticipating McDreamy saying, "YES! Taking X vitamin will cure you!...by the way, you look adorable." (hehe) Wishful thinking? I always have hope.

I had a dream last night that acetyl L-carnitine and alpha lipoic acid lessened my pain a great deal. I can't remember if that was before or after the guy selling me a purse went on a killing spree, or I was in a high flying trapeze competition. Weird...

Olivia Needs Our Prayers

She has been at Johns Hopkins for the last few weeks where they are trying to take her off all 17ish meds she was put on over the last 8 years of confusion, misdiagnosis, and several autoimmune conditions, and put her on the correct meds to control her full body RSD and whatever other issues they find. She is in so much discomfort and in the basement of this hospital with no windows being prodded and poked and detoxed... I'm sure she is so sad and I KNOW she needs love and prayers for a speedy stay and lessened pain.

She deserves health and happiness more than anyone. She has been through enough!!!!! No more!!!!

Olivia, everyone I know is thinking of you and praying for you. Please come home happy, healthy, and in less or zero pain. We are all on your side and always will be (especially me!!!).

My Happy Day

You wouldn't dream up that an individual with an incurable disease who shares her life with strangers is a private person, but I truly am. For now, let's just say something very special happened yesterday, and it involves a ring :-)

Raw Food Does A Body And Mind Good

I am a few months into my mostly raw, vegan journey, and I have never felt more vibrant, thriving, and connected to my true self and the earth... even with RSD. At this point, I am about 90% raw and adoring this food-as-medicine, both prevention and intervention, approach to chow (and I do LOVE chow)! My body is a temple, a divine endowment, and my occupation as keeper of this glory is to treat it with the same respect and compassion that I would treat anyone else I admire.

You see, compassion is a staple item for raw vegans. Compassion toward self, compassion toward others, compassion toward the environment, and compassion and nonviolence toward living things. The path of nonviolence cultivates compassion. Besides, do you really want to be ingesting an animal that was raised with and kept in horrible conditions taking notes while their soon-to-be-slaughtered comrades shriek as they wait to be dragged to their own death? Forget toxins! What about those stress hormones you are gobbling up?!?! Icky.

I slurped up an incredible juice today made of kale, spinach, and apple! Wowza! I felt like a kid in a candy store deciding which juice to order from the juice bar in a natural market I didn't even know existed. Jackpot!

Pain? Oh yea, pain... that is here today as well, but let's exit this post on the positives instead. Today, I did some yoga, meditated, layed in the grass barefoot with my pup, drank marvelous juices and ate lucious raw foods... It's only 4:46PM, and I have already had a remarkable day :-)