I have an Invisible Illness

30 Things about My Invisible Illness You May Not Know

1.) The illness I live with: totally unknown. a big mystery.

2.) I was diagnosed with it in the year: undiagnosed.

3.) But I had symptoms since: 2001.

4.) The biggest adjustment I've had to make is: taking naps and canceling plans.

5.) Most people assume: I am a totally healthy 32 year old.

6.) The hardest part about mornings are: opening my eyes.

7.) My favorite medical TV show is: Grey's Anatomy.

8.) A gadget I couldn't live without is: my Kindle.  when i'm in the hospital I can just turn it on and download a book to keep me entertained.  my iPad is another gadget that I couldn't live without.

9.) The hardest part about nights are: realizing I can't get everything done.

10.) Each day I take: 26 pills... some prescribed, some vitamins, some OTC

11.) Regarding alternative treatments I: have not tried.

12.) If I had to choose between an invisible illness or visible I would choose: invisible.  it's nice to have a little privacy.

13.) Regarding working and career: I was forced to go from a full time case manager at a small non profit to a part time employee with no benefits because I was in and out of the hospital and constantly ill.  I now work 30 hours a week and spend my day off at various doctor's appointments.

14.) People would be surprised to know: I have the best of intentions.

15.) The hardest thing to accept about my new reality has been: I can't do everything.  I'm good for one fun activity a weekend.

16.) Something I never thought I could do with my illness that I did was: work.

17.) The commercials about my illness: there are none.

18.) Something I really miss doing since I was diagnosed is: shitting in the toilet.

19.) It was really hard to have to give up: all the fun stuff I want to do.

20.) A new hobby I have taken up since my diagnosis is: making jewelry!  i absolutely love taking random pieces (someone's trash) and turning it in to a wearable piece of art (someone's treasure)! etsy has been my therapy.  www.rhubarb79.etsy.com

21.) If I could have one day of feeling normal again I would: go back to school.

22.) My illness has taught me: to never give up and be persistent.  doctors don't always have all the answers because, like me, they are human too.

23.) Want to know a secret?  One thing people say that gets under my skin is: "God has a plan."

24.) But I love it when people: give really, really good hugs.

25.) My favorite motto, scripture, quote that gets me through the tough times is: "it will be alright in the end.  if it's not alright it's not the end."

26.) When someone is diagnosed I'd like to tell them: "I totally get it."

27.) Something that has surprised me about living with an illness is: how strong I actually am.  strength doesn't always have to be physical.

28.) The nicest thing someone did for me when I wasn't feeling well was: listen.

29.) I'm involved with Invisible Illness Week because: it's time to be visible.

30.) The fact that you read this list make me feel: honored.

When doctor's meet me they congratulate me on being a fantastic patient.  A patient that pushes the limit and makes them think outside the box.  The problem?  Most doctor's don't think out the box.  They see you for 15 minutes (if you are lucky) and decide (a) to put you on a new medication (b) order another round of blood work or (c) refer you to a different doctor.  No one knows what is wrong with me.  My colon broke so now I have an ostomy- why did my colon break?  No. One. Knows.  My esophagus broke so now I get it "stretched" every 6 months so I can swallow.  I have neuropathy in the mornings and Raynaud's in the winter.  I can't be outside in the summer because of my sick heart and I have kidney stones just hanging out in both kidneys.  

It may be "invisible" to you, but it's very "visible" to me.  

At the beginning of the month I there was a very unfortunate turn of events in the saga that is my life.  I have been on a forced vacation and have had several weeks to "think" about everything that is going on.  Things I have Learned:
1.) Some of my friends, are not my friends, and I need to accept this and move on. (and if I haven't heard from them by now, I REALLY need to move on.)
2.) This very private event has become very public and I will never be as open about things again.
3.) Discrimination is everywhere, and, it sucks to be on this end of it.
4.) My life changed in  30 minutes (or less) and it will never be the same.
5.) The best thing you can do for depression is GET OUT THERE AND HAVE FUN, despite how comfortable your bed is or what marathon is on Bravo.
6.) When one door closes, another one opens. (great advice from my amazing hubby)

D, as in Damnit

It was really hot today. Like too hot for Casey (which tops out at 80 degrees). Not only does my heart rate skyrocket, but, when I start to sweat that usually means my bag starts to itch and burn and I am minutes away from a leak.

Here is the irony... I need to be outside. I got some random blood work back that said I was extremely vitamin d deficient. Like real bad. What does a vitamin deficiency do to your body? Depression (check), fatigue (check), anxiety (check), muscle cramps (check), bone density loss (unsure). So, basically EVERY SYMPTOM I HAVE BEEN COMPLAINING ABOUT TO EVERY FUCKING DOCTOR. Why is it the pain management team        randomly decided to check my vitamin levels AND NO OTHER DOCTORS thought too? It's really starting to piss me off. I get a major organ removed and there was no one that thought to tell me the things to watch out for- kidney stones, dehydration, vitamin deficiencies, pills not digesting, fruits and vegetables not digesting, what to do when in swim, what to do during a stomach bug, what kind of clothes to wear, what to do when going through airport security..... The basic, everyday things. Why is there no team that sweeps in to tell you all that stuff- I learned everything on the Internet, which is great, don't get me wrong. Not only can I look up what movie is playing in my area, but I can also diagnose the growth on my right nostril (and, no, I do not have a growth on my right nostril- but I bet you get the point). I just don't understand why I pay doctors really good money, but the majority of the helpful information comes from Google. All I really need is a stethoscope to make sure I have bowel sounds and Wikipedia and I'm good to go.

Six

Things I Love Right Now:

*Nice People. Especially the Valet Gentlemen at the hospital and the Nurses that work at my Doctor's office.

*Cool mornings. Even though the afternoon temps are already getting to the mid-90''s the mornings make it all worth it.

*A working hot water heater. 5 days of ice cold showers and not being able to use the dishwasher make me very grateful it is fixed.

*Reality Television: Once a week Morgan and I curl up to watch "Toddlers and Tiaras" and "Dance Mom's Miami." It is those two shows that, in Morgan's eyes, make me look like the best mom ever and not a uber crazy one that makes their child wear flippers or practice dance 8 hours a day.

*hearing that Morgan was nice! and polite! when she goes over to her friends house. My work has paid off!

This last one requires a (lengthy) explanation: by the time I get home from work, usually between 5 and 6, I am physically and emotionally worn out. All I can think about is going to bed at 8; but, when I go to bed that early I tend to wake at 4 and can't go back to sleep. I have decided to problem solve my sleeping habits and make myself stay up until midnight and guess what? I slept, uninterrupted, from 12 until 7 am. So, the last thing on my list is sleep!  7 hours of glorious sleep!

Scorecard

So, like every week for one reason or another, I found myself sitting in my doctor's office waiting for the verdict on this round of symptoms. It's not like my PCP can do a whole lot- but sometimes I need the comfort of a regular family practitioner; as I suspected, his only idea was to order a round of labs and follow up with my GI and Colorectal Surgeon. I made it down to the lab and donated my standard 4 vials and got to do something new! gave a "on the spot" stool sample. The lab techs informed me that I could bring the sample back anytime this week because not all individuals were comfortable doing it right then! and right there! I told them that it was no big deal, to point me in the direction of the bathroom, and I would be out in a minute. I got a very confused look and decided to explain- that I have an ileostomy and giving a sample would only consist of opening my bag and sticking the Popsicle stick inside. Their response made my day, "we never would have known- you look like you are totally healthy. unbelievable that you have that!" 

Ostomy Prejudice: 0, Maternity Clothes: 1

Handicapped?

My vision of handicapped individuals: someone who walks with a noticeable limp, cane, or walker; someone who is in a wheelchair or has crutches. My vision of a non- handicapped person: me; someone who walks normally, who has no support from wheelchairs,    crutches or canes; someone who "appears" to be totally healthy. I know how I look from the outside: healthy, but a tad bit overweight. But, as I have learned over the past two years- you should never judge a book by its cover. 

Cancer: no hair;Broken Bones: a cast; Past Surgeries: a scar; Allergies: runny nose.    Autoimmune diseases: invisible- like a superhero. Autoimmune diseases rob you of      energy, appetite, sleep, and the hope of a perfect day- and, in most cases, you you would not be able to tell the difference between someone who has and someone who has not. Autoimmune diseases are painfully tricky- there is not really a "test" to diagnose, your doctor has to go based on their gut feeling and ability to put 2 and 2 together. And, if you have a totally lazy burnt out doctor, you may never know; you could live day to day    thinking (and having other people think) that you are either crazy, going crazy or one step closer to the psych ward. There are days I feel like I am in all three states, that I have to remind myself to take a deep breath and step back- I am not crazy.  I have a tricky illness- lots going on: terrible pain, heart, kidney and liver issues, migraines, autonomic nerve   issues... the list could go on and on.

                    

Hopefully, my story has a happy ending. But until that time, I am the proud owner of a new handicapped tag- you know, so when I go to Target or the mall at Christmas, I can park right up front. It's the little things.

I was stuck in traffic, of course I had to keep myself occupied.

Multitasking is my best friend. It's the peanut butter to my jelly. It's the milk to my cookies. It's the water to my ocean. I can't go 10 minutes and not have something (iPhone, iPad, Mac Book, Kindle Fire, etc...) in my hands playing. Am I important? In the grand scheme of things, nope. I am just a normal person that has been bitten by the technology bug; the symptoms include: twitching, boredom, sarcasm, and narcissism. I remember in high school when I would leave my house, go to school, and then go to work or after school activities- WITHOUT CALLING OR TEXTING ANYONE- and always with the promise of "calling you later." There was no Facebook (and thank God for that- I couldn't imagine having to survive the battlefields of high school with the added pressure of being popular on the world wide web), no Twitter, and very little blogs out there for the bored teenager to peruse.  We had to go to the library to "research" and coffee shops to hypothesize why our qparents wanted to ruin our personal life.  Life was so simple. I was completely and utterly happy and healthy. And, really it all boils down to that one word, "healthy." I could go to bed late, get up early, and only worry about... Nothing. I had no "real"" worries. I work at a small non-profit, Family Compass (formally known as the Child Abuse Prevention Center) with ladies I love and clients I adore. I have part time hours (due to illness), but in my heart I'm always there. We recently had our Celebrity Waiter Gala and I had the pleasure (and luck) of winning the iPad 3. My husband's first response was "now I'll never see you;" of course he said it all in fun, but I started to analyze why gadgets and technology are so important to me. I predict 50% (if not more) of my time is spent either sick/ not feeling well, waiting at the doctor's office for tests or appointments, or in the emergency room/ hospital. My iPad keeps me connected, my Kindle Fire helps me escape my world, and my phone helps me feel safe and grounded. If I'm home, I curl up on my couch with everything I need within arm's reach- gadgets (with chargers), pillow, Nap blanket (from Brookstone- to die for), phone, remote, and water. Do I spend way too much money on gadgets? Hell yeah I do (and if I could find a way to get my health insurance to cover it, I totally would. "Hey Dr. A- could you write me a prescription for the iPhone 4s? Thanks a bunch!"). The Internet is my group therapy; I have found so many young women who have gone through this; this life saving operation that changes you mind, body and soul. You have no idea how blessed you are- with every functioning organ- until you lose one to disease. It's like the game Jenga- you pull one block out and the whole tower suffers.

how are you?

I’m fine.

As I lay in bed yesterday having my monthly pity party, I realized that I am definitely not fine. I’m so tired (prolly because I’m chronically ill). I’m in so much pain (prolly because my gallbladder and liver are fucked). I feel so guilty (prolly because I have a healthy 10 year old daughter and an even healthier 30 year old husband and I have no energy to be good wife/ mommy).

I have many health issues, this is no surprise. I have a permanent ileostomy (google it- it’s pretty fantastic). I have been recently diagnosed with Triple A Syndrome (it’s even more fantastic than the ileostomy). All of my issues first presented as problems with swallowing food- it would get stuck, hurt, and I would have to make myself throw up to relieve the unpleasantness of the whole situation. So, for the past 3 years, every 6 months or so, I go in for a routine esophageal dilation. After I have the procedure done I can swallow my meds, my food, hell, even a whole rotisserie chicken. Unfortunately last year my normal GI doc left UT Southwestern and I am currently stuck with some asshole who doesn’t believe that the dilations are helping and refuses to do anymore. His suggestion: liquid diet. I’M 32 YEARS OLD. I have liquefy everything I eat? Seriously? This is so not ok.

The other “issue” I am having right now is my stoma. It’s long. Like, flaccid penis long.

Remember this guy? This is my stoma.

Unfortunately my stoma is working. Mechanically speaking, it’s perfect. I may be picky, but

I want it to at least look pretty and be shorter so I don’t have to change my bag ev.ery.day. And we aren’t even to summer- last year we had a record breaking heat way- my bag didn’t stay on 12 hours. It is exhausting.

Am I ok? Nope. But, I hope someday I will be- because I cannot live for 50+ years like this.

“Oh dear.”

"I hate..."

(found this on a blog that I regularly read... sums up my feelings- spot on)

No one would ever know what is in my bags. Unless one spilled over- which is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers, I bring EVERYTHING. (this, alone, is exhausting. I always leave the house thinking, "if I wind up in the hospital" will I have what I need? I def feel like a bag lady.)
I do love my life, but I hate alot of things lately.
I hate having so much to say, to blog, to share but my hands hurt too much to type.
I hate popping pills.
I hate living up to other people’s expectations of what a healthy person should be.
I hate living up to other people’s expectations of what being sick is.
I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday”.
I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
I hate that I know my doctors better than I know my friends and some of my family.
I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and spoons.
I hate people who complain, “I need a nap”, “I need some caffeine, I have a headache”, “I have pms cramps”, or even better… “I have a cold… I am Ddddddyyyiing!”. These expressions need to be banned, because they do not
adequately describe how you are feeling and they belittle what pain and sickness I may be feeling.
I hate having to defend that I am a good mother, daughter, sister, or friend. (or wife...)
Most of all lately, I hate people who judge, and give me advice, or questioning stares of how I handle my diagnosis, or my life.