Sunday, September 8, 2013

My five strong wall.

I have five very inspirational people in my life. Two are no longer here with me today, but still their actions live on in me. 

The first and foremost would be my mother, who stood strong when adversity faced her. A single mom at the age of 31 back when being a single mom was not common, she managed to not only get her G.E.D but as of today holds her M.S. Degree in Nursing and Education. However this is not what makes her strong, this to her is just expected to be as it is. What makes her strong is her children, a boy with Asperger's Syndrome to late diagnosed and a girl with Bi-polar Schizoaffective disorder diagnosed early when there was little information on it and SLE later on in life. Though she wasn't perfect, though the end result wasn't perfect, she stood strong and pushed through all the social barriers trying to make sure her children were happy, healthy, and successful. We were for the most part, late bloomers on the successful end as we're both currently pushing through college. The fact that my brother and I have what resembles semi functional lives without the aid of any specialist is kind of amazing, it even amazed my psych doctor when I did go for three months last year. If anyone was the main first supporter of invisible illness in my life it was my mother, before I ever even knew myself to be ill.

My mother is my wall of strength when I am weak. 


The next person in my life was no less as strong as my mother; My Granda. This is the man who I looked up to an thought "this is what a man is". No he wasn't a big ball of loveable fun and silliness, however he was a man who set an example. He donated over 8 gallons of blood to the Red Cross in his life time. He turned an itty bitty 1 bedroom farm house of 500sq ft. into a flourishing four bedroom 2.5 bath house of 2,200sq ft. by himself while raising four kids and in the military. He served in the Navy for 50 years of his life and traveled the world during that time. Even growing up with segregation and it was all he knew most of his life, he still lived by the motto of "You don't judge a person based on their looks, you have to look deeper and judge them on the character of their soul". When the doctor told him to stop smoking or he'd have only five more years of life, he did everything in his power; even went with acupuncture and hypnotism skeptically complaining about it the whole time. He did manage to quit within six months of being told, he died a year later from emphysema. A month before he died he was made the Grand Master after the end of his term as Right Worshipful Master of his Masonic Lodge. It was one of the few times I saw him cry and they even allowed the families to attend the appointing which was rare.

My granda is my guiding light when all seems dark.

The last family member who has been inspirational in my life, really doesn't seem all that inspirational. She died four years after my granda, and she was my gran. I was never particularly close with my gran, as I was always following the heels of my granda growing up, but still she was there. She taught me that family service was not to be looked down on. Her entire life was devoted to her family. She raised a daughter with Schizophrenia when mental hospitals where considered the only choice. She raised a daughter who was deaf until the age of six and considered mentally retarded, my mother. Most people thought she herself was crazy because of it, but she was determined to make sure all her children grew up normal. They all went to school, they all worked on the farm. She even found time to pursue her hobby as a painter, and made sure every last child of hers knew music and knew art. My uncle is a baker, he loves to make baked goods and every year at Christmas we always looked forward to his tin cans filled with our favorite goodies. My eldest aunt is a pottery maker, even had her own kiln. My schizophrenic aunt is a craft maker, give her tooth picks and she'll make you an ornament that you couldn't even tell was tooth picks. My mother is the knitter, cross stick, crochet, you name it. After granda died, she felt it was time to leave and gave up on life. Her four kids where all happy and settled, successful in their own areas of life, even my aunt who's a real estate agent though she never really leaves her house. She even saw the birth of three grandchildren before her death. It was a slow death, she wasted away for four years and was bedridden by the last. I was her caretaker for that year, and the first one to learn she had passed away. She was always talking to granda those last two days. Our family always says that's how you know when someone's going to pass, cause a family member comes to get them.

My gran is my wisdom and my way of life when I feel lost.


The other two inspirational people are my not so close friends. We don't hang out all the time, we're not always talking, but they are inspirational to me because we are in the same boat. One is a sister of a friend, she suffers from Multiple Sclerosis she is a mother of three and works hard. She's always up for a fun night or or a lazy night in watching movies. Her favorite spot is sitting by the pool and even when she's sick, she makes it look good. The other is a lady I met in college, she suffers from Fibromyalgia. She took works hard as a manager of a fast food restaurant, while attending college full time, and she is super involved in her church. These two ladies had their diagnosis well before I even knew what Lupus was, matter of fact my college buddy was the one who really taught me the most about it since I met her right as I was diagnosed. These two ladies show me on a daily basis that we may have the illness, but it sure doesn't have us.

My friends are my comfort in knowing that the fight is worth fighting, even when it doesn't feel like I can.

Tuesday, September 3, 2013

I keep thinking "Maybe today..."

Maybe today...

...I'll ask the young college girl talking to her friend about the 3mile marathon at her sisters school fundraiser sitting on the city bus if I could have her seat. I don't though, I stand through the jolts and turns baring my weight trying not to cry out in pain as the bus comes to a sudden halt. My ankles screaming at me in pain. I had to wear my flats today due to the swelling in my feet. I feel odd asking, I don't look sick in anyway. I look fat and lazy.

Maybe today... 

...I'll go to the bus station and get a handicap badge, but I haven't yet. Handicap, it's such a horrible word. It means I'm not normal, not capable of being like everyone else even though I look like them.

Maybe today... 

...I'll petition the apartment complex to put in handicap parking in front of our building so I don't have to carry those grocery bags from two buildings over. There it is again the word handicap, the signaling out that something is "wrong" with me. How do I explain that though I look this way on the outside, on the inside I'm decaying slowly. Eaten alive by inflammation and a slow deterioration of my joints.

Maybe today... 

...I'll speak up at the pool as the people move our stuff from our table so they can have the shaded porch area for their family barbeque. I haven't yet, instead I've just stopped going. It doesn't seem worth arguing over.

Maybe today... 

...I will take the elevator up to my class instead of walking the flight of stairs to the 2nd floor. I know that I won't however. I look at those stairs; simple things really, 30 in all. To take the elevator would be to admit defeat to the pain.

I look at my high heels, my pretty dresses, my scarfs, and I sigh. Maybe I'll wear them today, but I can't find the motivation. 

Maybe today... 

...I'll tell my son to help mommy a little more, but I won't. To feel like I'm a burden is in essence to fall into despair.

Maybe today... 

...I'll accept my doctors advice and not downplay my symptoms. But not right now, because today is someday in the future.

Maybe today...

... I'll learn to accept that I am ill. Still, how do I accept that I am ill when the mirror and the world see otherwise.

My SLE story

I'm 26 years old with one child and a loving husband.Two years ago my symptoms of illness got bad enough for me to go see my PCP (Primary Care Practitioner). The symptoms where new; I couldn't eat, or hold down food.

All my life I had issues. I was my mother's sick child. The one always in the hospital or going to the doctor for one reason or another. The answers were always the same "She's a kid, probably sprained her hand playing." or "Seasonal allergies affect the immune system so she'll get sick a lot if there's allergens in the air." They ignored the fact that "allergies" put me in the hospital for nearly a week. My mother chased after answers and finally gave up. She began saying "I don't know what you're going to do when you're my age."

I was too skinny so they put me on a diet to gain weight, then I became overweight and they began saying "Her weight is the problem." they told my mom to make me eat more vegetables and fruit. "Limit the junk food." they said and my mom's eyes bulged out of her head on the drive home. "'Limit the junk food?'" She'd screech "Like we can afford junk food and snacks." It was true too. There was always vegetables with dinner, we lived on a farm. Onions, green beans, collards, string beans, pole beans, kale, cabbage, carrots, tomatoes, okra, and more. We grew them. Fruits? We had those too; pear trees, blackberry bushes, blueberries, apple trees, watermelon, and even strawberries. We got snacks when we were sneaking into the blackberry bushes.
The doctors would tell my mother, "Don't let her play video games or watch to much TV." yeah she went home steaming mad on those days too. We had four TV channels on one small TV in our living room. Video games? Maybe if I visited my friend in the city over. Nope I was a good old country girl, never found me inside. I was always out climbing trees and sitting on haystacks watching the cows eat, or my absolute favorite playing down by the creek and fishing. The creek was nearly a half a mile through fields and woods from my house. No population in sight. I loved it, even with the fact that my ankles couldn't support my weight and would frequently twist leaving me with said half mile to limp back home on a swollen foot.

I got use to the twisted ankles, the knees giving out randomly, the swollen hands, the consistent headache, the fact that within 10 minutes of being in the sun I looked liked someone had baked me and felt like I had been dipped in acid, and my chest tightening in pain then leaving me dizzy seconds later. It was just my body, the doctors had no answers for us so I just learned to make it apart of me.

Within just two years my mother and I gave up. I didn't care and she couldn't find the answers. I think that's why she became a RN. Now she has her M.S. in Nursing and is weighing the idea of a PhD, but I think she got tired of the doctors and went the only route she knew to go.

I was about to turn 24 when I began showing new issues. It started out small. I went from eating three meals a day to just 2, then 1. My one gradually faded into a half a meal then into a few bites of food a day. I began not being able to hold food down. One bite would send me running for the bathroom. My bowels began changing. My hands began to swell more. Walking became so painful. I didn't know what was happening. My doctor did an RA panel, it came back negative, so he sent me out to Gastro and Rheum specs. Who did a series of their own blood panels. I use to joke that I liked hugging a porcupines because my veins are really bad and just to get one vile of blood I'd be stuck five or six times. The Rheum specialist sent me to Neurology, who looked at me like I had no business being there.

Then the results came in, my best friend and I went, we both had appointments that day so we figured we'd carpool. The doctor came into me room and said "Let's go to my office to look over your results." Okay now I was nervous. They only ever do the office talk for the really bad stuff. She tells me "blah blah blah antiphospholipid syndrome syndrome, blah blah blah Lupus, possibly systemic lupus erythematosus or SLE for short, blah blah blah."

I walked out of the office and right up to my friend and she asks "So how did it go." and I look at the paper, then I looked at her and began laughing. She takes the paper from be and reads what the doctor wrote and begins laughing too "At least it's not cancer." and I look at her and smile. "Indeed" well I needed more x-rays apparently so we began walking over to the imaging center which was in the same building and all the while we're talking and laughing about me moving or Oregon or Washington, somewhere not sunny and having a "Green" house with my art studio set up in there.

And we spent the time waiting looking up information online about what SLE was, cause I'll be honest. WE KNEW NOTHING. With each new page of information we found the dimmer it looked and the more I began to shut down and suppress. Let me tell you, I am good at suppressing; I could be in a full blown hysteria and suppress it within seconds to the point where you couldn't tell I was any sorts of upset.

The next two years have been a horrific battle between my PCP and my RA doctor. My blood work is inconsistent, sometimes I have the antibodies, sometimes I don't. My RA says that without the blood work showing I have it, I can't be treated, my PCP says I have most of the physical symptoms therefore I should be treated.

Not to mention, I've gotten worse. I live on Phenergan now take 2-3 times daily as needed. I'm suppose to be on several different pain killers, they're sitting in my medicine cabinet collecting dust, on really super bad days my husband might cram them down my throat with his loving "I'm worried" eyes as he stares me down. I'm on an anti-inflammatory called Diclofenac 75mg twice a day. My doctor keeps throwing around the term "Pain Management" and I'll be honest, I duck him when he does. It's scary, I know what those medicines do to you and when I think about how one bad day lays me up in bed completely useless to my family, I shudder at the thought of those pills. I'd rather suffer the pain and enjoy my family than suffer non existence due to drug induced comatose. These drugs are very scary. I'm still recovering from the Prednisone they put me on at the start of August. Finally got rid of the ear infection and I'm starting to finally dry out the acute bronchitis that was brought on by a lovely cold that laid me out cold for several days.

I carry an umbrella with me at all times, which living in Florida is actually quite handy. If I forget my umbrella and have to spend the day in the sun do to errands or an event, I can promise a lovely hive looking rash that burns like acid. Needless to say, I very rarely forget my umbrella. People on my campus look at me really weird too when I'm walking to my next class.

I've had to give up a lot of things like dairy, eggs, bacon. I've gained a lot of things too, though, like the ability to look at a load of laundry and say to myself "Tomorrow, I've done to much today." use to I'd just keep going until I regretted it.

We've got it confirmed now, new RA and all. I indeed do have APS and SLE. We know it affects my digestive system, musculoskeletal (i.e. my joints), and my peripheral nervous system. No kidney involvement, even though I show the signs, the tests come back clean. Which I am grateful for. The kidney issues seem kind of scary. At the end of the day, it could be better than again it could be horrifically worse, so I'm grateful and happy.
The sun and I; we'll never get along, however it won't stop me from being outdoors.

Sunday, September 1, 2013

30 Things About My Invisibility You May Not Know.

With Invisible Illness Awareness Week just around the corner, I thought maybe it's time I share my story.
There are millions of stories out there so particularly I wouldn't consider mine much of anything, yet I represent a large part of the community both the mental illness community and the physical illness community.

I am living with Bipolar Schizo-affective Disorder and Systemic Lupus Erythematosus (SLE).

"Approximately 96% of people who live with an illness have an illness that is invisible. These people do not use a cane or any assistive device and may look perfectly healthy" (2002 US Census Bureau). This is a major problem with invisible illness, this is my biggest obstacle in day to day life. I have no cane to walk with, no wheelchair to aid me, no back brace showing my pain. I look like any other woman you may see walking down the street with her family. Yet with each step I take I break a little inside. My joints are swollen with arthritis, my ankles have sever bone spurring and extra bone growth, my spine is riddled with inflammation. This does not stop me, I refuse to let it. I'd rather walk than sit, play than watch, learn than shut down. Like millions of other suffers, I'd rather live than waste away. I'm blessed with a family that is super supportive, and my husband who is still just a marvel to me.

This is the 30 things about my illnesses you may not know. 

1. The illness I live with is: Bipolar Schizo-affective and SLE
2. I was diagnosed with it in the year: 1999 BP/SA and 2011 SLE
3. But I had symptoms since: As long as I can remember for the BP and since the age of 10 for SLE.
4. The biggest adjustment I’ve had to make is: Seeing myself as sick.
5. Most people assume: I'm lying.
6. The hardest part about mornings are: Putting my feet to the floor.
7. My favorite medical TV show is: House, because there is always a cure. Plus his sarcastic nature is right up my alley.
8. A gadget I couldn’t live without is: My computer.
9. The hardest part about nights are: Laying down.
10. Each day I take _13_ pills & vitamins, mostly vitamins. (No comments, please)
11. Regarding alternative treatments I: am highly supportive and practice them myself.
12. If I had to choose between an invisible illness or visible I would choose: Neither, they both bite.
13. Regarding working and career: I am going to school full-time with International Relations/Linguistics as my Major. I hope to work with others who not only suffer from illness but struggle with daily life especially on the international level. Working for UNICEF or the U.N. is my ultimate goal.
14. People would be surprised to know: That both my Psych and PCP doctors are shocked at my well-being and that even with both these illnesses. 
15. The hardest thing to accept about my new reality has been: That I cannot do it all, that I have to accept days when getting out of bed is nearly impossible.
16. Something I never thought I could do with my illness that I did was: Function without medications. I'm 11years off Psych medications and instead use Cognitive Behavioral Therapy.
17. The commercials about my illness: are non existent that I know of.
18. Something I really miss doing since I was diagnosed is: Bikram Yoga.
19. It was really hard to have to give up: because I felt so much better after doing it.
20. A new hobby I have taken up since my diagnosis is: writing.
21. If I could have one day of feeling normal again I would: Go to the beach with my family and spend most of it in the sun!
22. My illness has taught me: it's okay to take a break and go slow with things.
23. Want to know a secret? One thing people say that gets under my skin is: "Oh it's not that bad." or "That's horrible!"
24. But I love it when people: Laugh and say "Damn that sucks."
25. My favorite motto, scripture, quote that gets me through tough times is: A body in motion stays in motion.
26. When someone is diagnosed I’d like to tell them: There may be no cure, but there's no death sentence either. You can still live and it's living that is important.
27. Something that has surprised me about living with an illness is: How little people know about it.
28. The nicest thing someone did for me when I wasn’t feeling well was: ordered dinner. My husband is awesome.
29. I’m involved with Invisible Illness Week because: more people should know the truth.
30. The fact that you read this list makes me feel: Excited.

One of the many blood work bruises I get left with.

Pulling plasma, one of the few treatments I'll accept.

Making best of being in the hospital. I don't think they like it much when he curls up in the bed with me.

Two days after I got my official diagnosis. NEVER STOP LIVING!!!