THIS is what I've been doing.

I've dreamt of "retirement" for three years; I've had Pinterest boards, magazines book- eared for projects, lists of books and movies to entertain my days of lounging in the sun by the pool.  But, wait.  I don't have a pool.  And I can't be in the sun.  So WHAT do I do with my time?

I Like Texas, Ain't if Fine Here

"Well there's old dancehalls and little cafe's, where you can get a taste of the Lone Star State, strap on your boots and have yourself a laugh or two, well there's no line dancin' just straight romancin'." -Pat Green, "I Like Texas"

When given the choice to go on a trip/getaway (whether somewhere a few hours away or across the country) I typically pick to stay home; it is my 'comfort zone,' my nest, my safe place.  I don't know if this is an 'OCD' thing, a crazy maternal thing, a chronic illness thing, or just part of my genetic makeup/ personality quirk(s).  Since 2010 it has been a chronic illness- I can't stay comfortable in the car for very long periods, I like using my own  bathroom, I can't predict how often I will have to change my bag (so that means packing up extra supplies, and always the question that lingers is "what if I have to go to the hospital or clinic?"   One of the goals I have set for myself (since I decided to "retire") is to get out more; not like normal places (Target, Movies, etc...), but to travel to places where I stay overnight.  This past weekend I got to do just that, Tyre's cousin got married near Abilene (beautiful couple, ceremony, and reception) and I packed up Saturday morning and we left town.  We stayed at his grandparent's house and it was the perfect amount of time, in my opinion, to be away from the house.  It is a 3 hour drive, a beautiful drive- and I enjoyed it because it's Texas and it's home.  We stopped at Dairy Queen, the obligatory stop on any Texas road trip, and despite the migraine lurking in my body- the three of us had fun.  Pat Green came on the radio and I was reminded how much I really do love Texas; the bluebonnets, Dairy Queens, the Lone Star Beer, dancing, barbecue, and wide open spaces (cue Dixie Chicks song). 

 

There is something that happens when you are driving on a trip.....

Your mind wanders, you day dream, you take mental inventory... and you escape.  

I plan on doing a bit more escaping in the near future.  

"Yeah, well, I like Texas, ain't it fine here...On the Sunday side of a road trip weekend, Lordy I was feeling so low." -Pat Green, "I Like Texas   

                        (the two of us, after the ceremony)

Life Lessons with Legos

Peace is a daily, a weekly, a monthly process, gradually changing opinions, slowly eroding old barriers, quietly building new structures. -JFK

Morgan recently became interested in Legos.  She has been passing up playing on her iPad or watching TV and going straight for the Lego sets we have been picking up at Target.  The bigger the better.  Legos prove to be quite an internal battle for me; I don't like clutter, I don't like 'toys' left out, but, she has been working so hard on getting them put together I can't bear to just pack them up- so currently they are displayed on the counter in the kitchen.  

Since my "early retirement" on March 28th I have been working on 'building' my new life.  I worked in the same profession for the same national program for 7 years, I was good with my clients and enjoyed spending time with my co-workers/ friends.  It's been two weeks since I left my job and I have a routine.  A routine of television shows, cleaning, and napping- but a routine none the less.  Everyone asked me what I was going to do now that I am not working and I realized that I really just want to do nothing.  3 years ago on April 23rd I had a total colectomy and since then (I hate to say it) but it has gone down hill.  Every procedure, every surgery, every illness came with symptoms, pain, and guilt.  Guilt that I wasn't at work, guilt that I wasn't a participating member of my family, guilt that I had to cancel plans all the time.  Since April 2010 I haven't focused on ME.  I was always trying to push through, "I just need to get back to work,"  "I just need to get to the weekend to rest,"  "I just need to get through this day so I can go to bed."  And to be honest, it sucked.

For the past few days I have been making lists, setting "now that I'm not working" goals, scheduling FUN appointments.  I'm not going to lie, it's hard.  A few things i have learned is to not make commitments and always expect NOT to feel good, so retraining my brain is taking some work.  

As I pass Morgan's Lego town in the kitchen I am reminded how hard it is to build (time, energy, etc..) but also how easy it is to tear down.  So, for the next few weeks I'm focusing on building my new life- if only I had an instruction booklet.       

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!