A Steady Dose of Meh

Shoot.
I didn't get back to the blog before February ended. Life's still hectic. Fortunately I haven't been ill (I've felt under-the-weather, but haven't actually been sick).

My ears haven't been bothering me as much, but my eyes are doing something weird.
I'm still doing those spine exercises almost constantly.
My nails have been stronger this month.
My acne medication is still not working.
Still annoyed with this unknown allergen.
Fatigue, fatigue, fatigue.
I should invest in a thermometer because I think I might have had a few fevers lately.
I had blood work done to see if I am low on vitamin B... I haven't heard back from that doctor. Note to self: Call them Monday. 

I have 47 days until graduation, I have a lot that I need to do between then and now. I think about those assignments and deadlines almost constantly. Along with the stress comes a wave of fear that I won't be able to do everything. This leads to more stress which leads to more fear and the more fear and stress I have the more I feel inadequate. It's not quite a feeling of hopelessness, it feels more like its distant cousin. Last May one of my doctors suggested I try going gluten free (I never did because I'm a vegetarian and most of what I eat is gluten), I've been thinking about trying that in mid-May (I just went shopping and bought a bunch of gluten and I won't be able to control what I eat when I'm in Mexico).

SALUD!

Woah

It's been more than a month since I last posted. Life's been crazy... I started my awesome internship, I'm scrambling to organize this trip for Mexico, sleeping too much, keeping two different journals for class, staying on top of school work, working, and life in general. It's hectic. A good hectic... kind of.

In the last month

• My earaches have been more intense and frequent
• I had a kidney function scare (but everything is fine)
• My lumbar has been aching so I've been doing an obnoxious amount of the exercises my PT from last year gave me (it's helped strengthen the surrounding muscles, without the exercises I think I would have been in an unbearable amount of pain)
• My nails were chipping one layer at a time (starting to improve)
• My acne medication doesn't seem to be working any more
• Pain in all four of my 6 year old molars 
• Fatigue
• Annoying allergic reactions to unknown allergen
• Tingling/numbness in my feet.

Hopefully I'll post again before February is over. 

Salud!

Memory

"All alone in the moonlight. I can smile at the old days. I was beautiful then."


Sorry for some reason I couldn't help myself. I've never even seen that musical and I think cats (as in felis catus) are lame. Sorry cat people. I'm a dog person. Okay I'm going to stop being tangential and get to the point: memories and memory in general. Mine is declining and I have to say I'm not a fan. 

I was diagnosed in 2011 but have exhibited symptoms longer than that. I'd like to write more about my journey from the beginning but my memory has the order all jumbled. I used to have almost total recall, what's really called eidetic memory. 

ei·det·ic  

/īˈdetik/

adjective

Relating to or denoting mental images having unusual vividness and detail, as if actually visible.

Some popculture examples being: Dr. Sheldon Lee Cooper (Big Bang Theory), Dr. Spencer Reid (Criminal Minds), Shawn Spencer (Psych), Olivia Dunham (Fringe), Mozzie (White Collar), Brick Heck (The Middle), Charlie Andrews (Heroes), Mike Ross (Suits), Lisabeth Salander (Larsson's Millenium Triology), and Will Hunting (Good Will Hunting). 

Although my memory wasn't truly eidetic like Reid's I did very well in high school without studying. I didn't need to. If I paid attention in class and did the assignments, I was golden. I remembered images and although the pictures may not have been perfect, they were pretty clear. Now it's a lot harder and I have very little control over what I remember. It seems like the things I recall best are really random bits I'm probably never going to need or the things I'd rather forget. The pictures are gone and it's like trying to look at a photo album in an unventilated room with a smoke machine. 

When catching up with friends I often start off by asking "Did I tell you about...?" to save them from the awkwardness that comes with deciding whether or not they should tell me this conversation has already happened. 

Lupus.org refers to this phenomenon as lupus fog.

"The term "lupus fog" is almost universally known to people with lupus. The phrase reflects the difficulty that you may have in completing once-familiar tasks, such as remembering names and dates, keeping appointments, balancing your checkbook, or processing your thoughts. Properly termed "cognitive dysfunction" or "cognitive impairment," this inability to recall information can be extremely frustrating. These symptoms may come and go, but may also be continuous, making school or work difficult or even impossible in extreme cases. People with both lupus and fibromyalgia are even more likely to experience cognitive problems."

I was prescribed a stimulant a few months ago and I have found it helpful. It allows me to focus which I definitely appreciate and I believe it has also helped my short term memory. But the long-term stuff that's gone will probably stay gone. There's no quick fix or magic pill. Not for Lupus. Not in life. Where would the fun be in that? ;)

Salud!

Back to Mexico

I've opened a page on youcaring.com to raise money for my mission trip to Mexico. 

http://www.youcaring.com/mission-trip-fundraiser/Going-to-Mexico/38498

Where your donations go:
I am raising money for a mission trip to an hogar para los niños (children's home) in Tlacolula, Oaxaca, Mexico called Foundations for His Ministries or FFHM. 100% of your donations will go towards funding the trip (airfare, transportation, food, and such). Lord willing, any overflow of donations will go straight to the kids themselves. 

Last year I thought the home was an orphanage. The children are not up for adoption, most have at least one able parent. However that parent is often incarcerated, abandoned them, or the children have been removed from their house by the Oaxacan version of DCFS (Department of Children & Family Services) called DIF (Desarrollo Integral para la Familia translation: Integral Family Development) for abuse or neglect. The picture I've used for this website is features three siblings from the home: the little man I’m holding is the twin of the little guy wearing the blue polo and their little sister is next to him. They live at la hogar para los niños because their mother abandoned them. Afterwards their dad moved back in with his family who after a short period asked the family to leave.

A bit about me:

I have an autoimmune disorder called Lupus... in the simplest of explanations I don't have a properly functioning immune system. I have very few white blood cells and my body attacks itself (my joints, my eyes, etc) instead of fighting sicknesses. 



Although Lupus often weakens the patient's physical strength it replaces it with something else. Those with Lupus learn the strength necessary to ask for help. Today I am asking for your help. In May I will be returning to Tlacolula, Oaxaca for a weeklong trip but i can't do it on my own. Lupus is undoubtedly a part of who I am, but it doesn’t define me. 



I still have goals, dreams, and passions that I am not willing to give up. I may be losing my hair, have an abnormally low white blood cell count and a body that acts like it is 25 years older than it actually is, but I’m the same girl I was before I was diagnosed. The main difference is that now I know a week in Mexico is the most my body may ever be able to handle. It's another way to prove that the plethora of blood/urine tests, hospital stays, countless prescriptions, flare-ups, and bumps along the road do not define me. At the end of the day my life is what I make it. I am a 23 year old college senior with a broken body and a deep love for children and Mexican culture. I am a girl who will not give up, who will not surrender. 


Thanks for your time.

Hope and Freedom (More Reviewing)

About this time a year ago I was preparing road trips. Almost exactly a year ago I was taking a Megabus to Minnesota and visitings a dear friend who is also a fellow sick-kid and a sort of mentor of mine. The weekend after that I drove the long way to Canada (where I stayed the weekend with a wonderful family) through Michigan to visit another friend. 

In the 366 days of 2012 I had countless doctor's appointments (primary care, rheumatologist, two different ophthalmologists...), physical therapy, acupuncture, blood tests, and if I'm not mistaken four emergency room visits. 

One of the greatest desires of the human is for independence. We may long for human interaction but each person wants and hopes for freedom, the ability to come and go as we please, self reliance. The hope of freedom often grows to desperation for someone with Lupus or another illness. The thirst that spawns from aspiring for one's independence mimics the stubbornness of a two-year-old save our shout (if only internal) is closer to: "I can do it. I'm not that sick!" than "I wanna do it. I'm a big kid." This is a quality that people in general struggle with. It's the "normal"or "healthy" hope for self reliance and is sometimes taken to the point of pushing others away. So although we "sick kids" hope for it more than others, we rarely allow ourselves to pretend it is possible. Hold on a moment. If you're reading this and are saddened by what I've written... Especially if you are recently diagnosed, bear with me a second longer. What is at the heart of this post, and what I intended in my last post (by saying 2012 was a year of independence and learning how I am not allowed to have any) ought not inspire sadness. 

At 23 I have been shown what it takes some a lifetime to figure out: being independent doesn't make one any better and it certainly doesn't make me any healthier. In my condition independence often makes me sicker.  I would rather be sick and know that I have truly dependable friends than be the healthiest person and alone.

"No man is an island, entire of itself; every man is a piece of the continent, a part of the main... Tribulation is treasure in the nature of it, but it is not current money in the use of it, except we get nearer and nearer our home, heaven, by it..." (John Donne, Meditation 17)

Onwards and upwards dears.