Wednesday, September 10, 2014

30 Things Meme

And the lists continue...This week I am blogging for Invisible Illness Awareness Week. Something I randomly came across two years ago during a very dark time. (That's when I had all the heart problems....those 5 days in the ICU...yeah...)

Well, IIAW saved my life then, allowed me to make really big life altering decisions that have shaped the last two years and so I hope that with my blogging and my contributions I can do the same for someone else out there who is suffering, questioning, agonizing, dreaming and hoping.

Last year, they re-published two of my blog posts which you can find HERE. Please, read, share and enjoy them!

This year they will be publishing another one, and once they do, I'll be sure to share that link with you all as well!

In the meantime, I am taking part in their 30 Things Meme...the creator of IIAW has asked us bloggers to respond to 30 questions so that our readers can get to know us better, so here are the questions and my answers:

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Scleroderma

2. I was diagnosed with it in the year: 2007

3. But I had symptoms since: Probably 2006ish

4. The biggest adjustment I’ve had to make is: Slowing down and giving up the career I love.

5. Most people assume: I am good at "keeping it together"

6. The hardest part about mornings are: Not knowing if I'll have the energy for the rest of my day until I get up.

7. My favorite medical TV show is: House!

8. A gadget I couldn’t live without is: My Laptop

9. The hardest part about nights are: Having to sleep at 90degree angle- blegh

10. Each day I take __ pills & vitamins. (No comments, please)- Um, as of yesterday...9

11. Regarding alternative treatments I: HAVE. TRIED. THEM. ALL. Some work (acupuncture helped with GERD, and insomnia, yoga helps with mobility) Some don't (homeopathic remedies required taking MORE pills than my stomach could handle, made me physically ill so I had to stop them)

12. If I had to choose between an invisible illness or visible I would choose: I kind of have both now. Most of my symptoms you can't see, but the Raynaud's has caused me to lose a fingertip so that's visible...I think I'd choose invisible still. They each have their own set of challenges.

13. Regarding working and career: I work from home because it allows me to not feel guilty about doctor's appointments and I can work from my bed when I need to. I wish I could work a normal job and see people everyday but it's too stressful and stress kills. I don't wanna die...or almost die again.

14. People would be surprised to know: I am very angry most of the time.

15. The hardest thing to accept about my new reality has been: I will never feel "normal" again. I have to consider how my health will be affected by EVERYTHING I do, from taking a shower, to changing jobs, to starting a family, to what I eat, how I sleep...EVERY little decision revolves around my diagnosis.

16. Something I never thought I could do with my illness that I did was: Give others hope.

17. The commercials about my illness: HA! WHAT COMMERCIALS?!

18. Something I really miss doing since I was diagnosed is: Swimming. Acting.

19. It was really hard to have to give up: Foods I love. Teaching theatre..

20. A new hobby I have taken up since my diagnosis is: Fashion. Baking. Volunteering.

21. If I could have one day of feeling normal again I would: Swim. Zipline. Eat EVERYTHING. (Practice making babies with my hubs...for hours)

22. My illness has taught me: Life is not easy, we all have scars, I can break and be put back together. To be patient with myself. To be thankful I have loved ones by my side. That living one day at a time isn't easy but it's possible. That life is what happens when you're busy making other plans. I can't control everything.

23. Want to know a secret? One thing people say that gets under my skin is: "How are you feeling?"- with that sad look in their eyes like they think I could fall over and die at any minute.

24. But I love it when people: Ask me real questions about my illness, show up to support me at my events, readings, walks etc.

25. My favorite motto, scripture, quote that gets me through tough times is: "I may not have gone where I intended to go, but I think I am where I was intended to be."

26. When someone is diagnosed I’d like to tell them: Hold on, don't worry, your life is NOT over. Take the time to grieve the loss of your old self, then take the time to love and accept this new you, and this journey. Be patient with yourself, you aren't going to know what to do. You will cry. You will be angry. You will be confused. This is all ok. Feel what you need to feel. Then, pick yourself up and move forward. Don't be afraid to make decisions, stand your ground (especially with doctors and stubborn family members) and get the help, treatment, love and respect you still deserve. You are still a human being worthy of having it all- even if you need assisted devices or prescription drugs to get there.

27. Something that has surprised me about living with an illness is: How many other people have illnesses as well that they are willing to share about once I share. And yet, that talking about illness is still so stigmatized, like people- GET OVER IT! Awareness is key!

28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me dinner, made me food without asking. (Hubby does it, Mom does it, and a friend did it once)

29. I’m involved with Invisible Illness Week because: It saved my life once, and I hope to do the same for someone else.

30. The fact that you read this list makes me feel: HAPPY! Cared for. Loved. Like a cupcake.

Thursday, September 4, 2014

Prepping For A Party

This is one of my favorite quotes from Elizabeth Taylor. If you follow me on FB you have often seen this quote as my cover photo, especially when I'm trying to motivate myself to do something...anything...other than be sad.

It also goes with my recently acquired life motto: "She decided that if she couldn't be happy, she could at least be beautiful."

I believe that ladies like ET and Marilyn Monroe probably felt this way too. Hard lives, hard times, emotional distress, pain and sadness. And yet they (and now me too), simply poured themselves a drink, put on some lipstick, and pulled themselves together...for better or worse, they chose to be beautiful on the outside, even everything on the inside was broken and ugly.
Now, I am definitely not advocating alcohol as a solution to your problems. Nor am I a vain enough to believe that a stick of lipstick, some eyeshadow and a good picture can make your problems go away. However, it is a nice momentary distraction, and just because I am sick doesn't mean I have to look sick.

So, on to the core of today's post, since I seem to be in a list mode lately, I have decided to share with my chronic illness buddies a list of tips/timeline for how to prep for a party or a big weekend event. Over the last couple of years I have had to learn by trial and error how to physically and mentally prepare myself for a weekend outing (wedding, birthday, dinner, work event etc).

For the average healthy person, this does not seem like a big deal. Shower, get dressed, get ready, go out. For the chronically ill, "getting ready" requires using up a lot of our engery stores, so, for me at least, I spend 4-6 days "getting ready" for the Fri or Sat outing. I learned the hard way that I cannot and should not try prep for a party the way I used to (pre-sclero) because I will not have any energy the night of the event.

So, here is what I do, and hopefully this will help some of you out there who struggle with feeling good enough to look good enough and looking as good as you feel.

1 Week Before Event: GO SHOPPING. If you REALLY don't have anything in your closet you can't just spruce up with some new accessories or a different hairstyle. For those who live with chronic illness and fatigue shopping is our version of running a marathon, especially if we feel we HAVE to try things on. It's freaking exahusting. So, I recommend doing this at least a week in advance because you'll need at least one day of recovery afterwards.

If you're not shopping for something new, I recommend "shopping in your closet" one week before too. Try things on, see what works, what doesn't. Consider how hot or cold the venue is. Will you need a scarf, cardigan, jacket, open or closed toed shoes? Will you sit? Stand? Dance? Can you walk in those shoes?! How big does your purse need to be? Need to carry meds? Consider all these things, and pick at least two YES outfits. (I say two becuase you NEVER know how you'll feel the day of and if you decide to change your mind you want to have a back up already in place)

Again, doing all this will take A LOT of energy, so...

5-6 days before event: REST and/or PAMPER YOURSELF I am NOT good at doing nothing. Anyone who knows me for longer than five minutes knows this. So, resting and I are not good friends. BUT I have learned to listen to my body, and if shopping has totally exhausted me, then I will spend the next day just relaxing. But, if I have even just the slightest bit of energy, I will "rest" and be productive.

How do I do this?

I go get a pedicure! A girl's gotta have cute toes with those cute shoes and after a day of shopping a good foot rub is exactly what the doctor ordered! I take the time to "prep" for the party AND I'm doing something nice for myself. So, do the same. Get a mani/pedi, or facial, or massage. This will help you relax and feel good, your body will thank you for it later.

Can't afford it? Take a bubble bath. Soak your feet in warm water and epsom salt, paint your own toes/nails..ask a loved one for a back rub, foot/hand massage.

3-4 days before event: GROOMING Ok, ok, so this may ONLY be a hairy Latina's problem...BUT... unfortunately for me, there is A LOT to groom. (Lol, TMI?) And lately, with limited hand mobility, this requires a lot of careful planning and WORK!

So, a few days before (3ish) I go get my eyebrows threaded, my upper lip waxed, and I shave my legs. I recommend doing any and all hair removal several days before the event, because if you're like me, you never really know how your skin will react. I learned the hard way NOT to wax too close to the event...had a blistered, red, painful upper lip for days..NOT CUTE!

Also, if you're trying new skin products, now is the time to do so, not on the day of..again your body/skin may reject it and an allergic reaction is not something you want to deal with right before or at a party/event.

Lastly, I shave 2-3 days before because I have to shave in sections. Because It. Is. So. Exhausting. On one day I shave both legs to the knee. The next day (if absolutely necessary- short skirt involved) I shave from knee up. Yep. There's my dirty little secret.

My sclero buddies will understand how stressful shaving is when you have digital ulcers and swollen achey fingers that make you drop everything.

2-1 days before event: HAIR Again, maybe ONLY a curly-haired Latina girl problem...but my hair is always only one of two things: My best friend and greatest accessory OR MY WORST NIGHTMARE. And in order for it to be the former, I must carefully plan and take care of it in advance...NEVER the day of.

I wash my hair a couple of days before the event because my curls just look better on day 2 or 3... slopping wet curly hair ain't cute. Big, bouncy curls are.

But washing my own hair (with one hand, two ulcers and joint pain and fatigue), in sections, and sections is no easy feat. So, I make sure to do this at least the day before but I try for 2 days before..because after I wash and style my hair, I'm exhausted and need a nap.

(So gentlemen, when a woman with chronic illness tells you she can't go out with you tonight because she's washing her hair...believe her!)

Even if you don't have the curly haired girl problem, I recommend playing around with hairstyles and deciding what you will want to do with it the day of. Up? Down? What will the weather be like? How simple or fancy do you want look? Try some things and decide on 1-2 styles that are easy and won't exhaust or frustrate you the day of. (I ALWAYS carry a clip or sruncci in my purse, Houston weather sucks and as beautiful as my curls are, I hate feeling hot- my hair always ends up in a pony tail before night's end)

Day of event:  GET READY Pour yourself a drink. Put on some lipstick. And pull yourself together.

Now that you have spent the last 7 days "prepping" for the event, all you have to do is pull it all together. I recommend, doing NOTHING the morning/afternoon of the event, so you can have fun and enjoy yourself all night. Morning event? Be sure to go to bed early, shower the night before (to save your energy in the morning) lay out clothes and wake up at least 2 hrs before you have to leave the house.

Again, no matter how much we plan, we never truly know how we'll wake up the next day, or if we're going to sleep the night before. (I often do EVERYTHING right, then stay up all night dealing with GERD and feel like hell the day of the party..bleh) But- we can try our best.

So the day of the party just put on your clothes, throw on some makeup, fluff your hair and GO HAVE FUN! You shouldn't feel rushed..give yourself time to get what you worked so hard for ready to make sure you feel as good as you're going to look!

Two last tips:

  • Always take backup shoes (I always bring my glittery flip flops or fancy flats). You don't want to miss out on the fun cause your feet hurt. Who cares if it's not super fancy, no one's going to take pictures of your feet.(And if they do that's just weird)
  • Don't drive yourself. - This is very important. You may have energy to get yourself there but at the end of the night, will you have enough energy and mental capacity to get yourself home? And I don't mean for those who drink...brain fog, prednisone brain, and fatigue can be just as dangerous as drinking and driving. I've been there! Not fun, very scary. Luckily, my hubby will drive 99.9% of the time. I am lucky. If you don't have a spouse, invite a friend to go with you to drive, get dropped off, call a cab...whatever, but again, save your energy for the fun stuff, not transportation! 
So, those are my tips for prepping for a party, because after all, even sick people "just wanna have fun."

Thursday, August 14, 2014

10 Songs & An Album

I have a lot to say. I have been through a whirlwind of ups and downs (mostly downs) the last month. I have seen some really dark days, and felt really alone at times. But I will hold off on all of that until I have gained some distance and perspective from all of it.

They say that if you're going through hell, to keep going. And that is what I am doing. So, when I finally come out on the other side, I will share what I learned with you while I was on my way.

Until then, I will share with you one of the few things that keeps me going: music.

Sometimes, when my thoughts are too loud I turn on the music to drown out all the other sounds. And it helps. So, today (inspired by another blog post I saw) I wanted to create and share a playlist on songs that I think help describe the physical and emotional aspects of living with Scleroderma. Some of the songs are purposely kind of funny and some are very emotional. If you live with the disease, you'll understand why I chose these songs. If you don't,hopefully you'll begin to better understand how this illness effects our entire bodies, including our minds.
I also found one whole album that aptly describes what many sclero patients endure in one word, and it is surprisingly by my favorite artist of the moment.
So, without further adieu- (Linked to Spotify playlist if you'd like to take a listen)

10. Rehab-Amy Winehouse: Because sometimes sclero patients need to go to physical therapy to rehabilitate their hands, legs, hips etc. And quite frankly, it can we say "no, no, no."

9. Ice Ice Baby- Vanilla Ice: Well...cause sclero patients are ALWAYS cold.

8. Blue Lips- Regina Spektor: We suffer from Raynaud's Phenomenon...need I say more?

7.  Ring of Fire- Johnny Cash: Anyone with sclero probably suffers from acid reflux and GERD. And when food comes up your esophagus with the fury of hell's angels...well..."it burns, burns, burns."

6. Scar Tissue- Red Hot Chili Peppers: What happens in scleroderma is a thickening of skin and other vital organs because of the excess build up of collagen. Collagen is what the body creates when healing a scar.

5. Keep Breathing- Ingrid Michaleson: Many sclero patients deal with lung fibrosis, pleurisy and other lung complications. We also just deal with a lot of BS from our bodies, doctors, nurses, pharmacists, our friends, family and the best thing we can do "is keep breathing..." even if it physically hurts.

4. Disturbia- Rhianna: Because it is a fact that: "Depression is one of the most common complications of chronic illness. It is estimated that up to one-third of individuals with a serious medical condition experience symptoms of depression."

3. Hands- Jewel: For many sclero patients, their hands are the first and most severely affected areas of the body.

2. Tired- Adele: The title says it all. Cause we are ALL "tired of trying...when we don't get nothin' back."

1. My Skin- Natalie Merchant: Again, the title says it all. Sclero meaning hard, derma meaning skin. This is song is beyond sad, but it quite adequately expresses what many feel: Take a look at my body/Look at my hands/There's so much here/That I don't understand..../I'm a slow dying flower/Frost killing hour/ The sweet turning sour/And untouchable

That is my top ten song list (for now). The album that I think sums it all up is.....

Lungs by Florence and the Machine- mainly because of the title, as I said before many sclero patients suffer from lung complications, fibrosis, pulmonary arterial hypertension, pleurisy etc. And also because almost every song on this album is amazing, emotional and speaks to me in some way.

So, what do YOU think of this list? Do you have any you'd like to add that adequately define what it means to live with scleroderma or other chronic illnesses?

Share in the comments below!