Let's Talk

The other day, while chatting with one of my sclero buddies, I came to a rather funny and yet stark realization:

The conversations I have with my chronically ill friends are usually quite different than those I have with my “normal” healthy friends.  I mean, I guess I’ve always known this and I’m sure it makes common sense for this to be the case. After all, one’s normal healthy friends can't fully understand what we go through. But I also found it very interesting how different the tone of these conversations can be even when you talk about the same situation.

For example, when a healthy friend asks me about my recent hospital stay or surgery the conversation might go something like this:

Heatlhy Friend: So I heard you were in the hosptial recently and had surgery?!

Me: Yeah, just trying to heal this finger already.

HF: How’d it go? How are you feeling?

Me: Oh, it was fine. As far as hospital stays and surgeries go. I’m feeling alright. No more pain, so that’s good.

HF: Yeah! That IS good. Well..you look great! (cue half smile and sad eyes)

Me: Thanks.

(Awkward silence, I change the topic) 

Now, to all my healthy friends, this is not to say that I don't appreciate your sympathetic inquiry and kind comments. But the truth is, you will never truly understand what it's like unless you have to go through it yourself. Which is why, I may never talk to you about my medical and chronic illness experiences the same way I do with my chronically ill buddies. 

See, one of the major differences I noticed in the conversations between my healthy friends vs my sclero friends is that healthy friends want to know so they can provide you some kind words of comfort. Your sick friends want to know so that they can compare war stories and help you find the silver lining. 

Sick Friend: Hey! So good to see you out of the hospital! How'd it go?

Me: Ugh, it was awful! I was there for 5 days and they had to give me 7 different IVs! I look like a freaking heroine addict. Look at these brusies!

Sick Friend: Girl I KNOW! Last time I was there for 2 weeks and by day 5 I had been poked 12 times! I finally broke down and told them to call my doctor to get a PICC line.

Me: Yeah, it's like they don't get it, our skin is tight, you can't treat us the same as everyone else.

Sick Friend: For real.

Me: The food was good though.

Sick Friend: What hospital were you at?

Me: Memorial Hermann

Sick Friend: Oh yeah, their food is awesome. 

Me: I had the turkey burger for like three days.

Sick Friend: Yeah! I always get the baked chicken.

Me: It's good, right?!

(Laughter ensues- they continue to ask REAL questions about my experience)

How were the nurses?- And we talk about how awful or how wonderful they were during that particular stay. How you know more about your disease than they do and how you can always tell who's new at their job by how badly they draw blood and how nice they still are. 

Did you get any REAL sleep?- The answer is always NO. Which leads us both into a tirade about how a hospital is no place to get better.

Do you have to go back?- The answer always an uncertain one because we all know how quickly being well can change to being ill. 

When do you see the doctor again?- It's always too soon.

You see, there is a certain level of cynicism and humor that comes from living with a chronic illness that only the chronically ill can truly appreciate and understand. We compare war wounds like soliders in battle because it helps us feel less alone. We try to "out sick" each other not because it's cool but because we have to share our stories (even if only to each other) to survive and to give others hope that "hey it could always be worse" and "if I made it through THAT, you'll make it through THIS." Our lives are a never ending dark comedy that only we are truly allowed to laugh at because after all, what else is there?

"We have to laugh to keep from crying"- Ntozange Shange

Again, this is not to say that my healthy friends' gestures and words are not truly appreciated, they are. And I am supremely grateful for anyone and everyone that cares enough to ask me about my health. But I don't feel as comfortable telling you (with sarcasm in my voice) about my bruised veins while I laugh about how my underwear got stuck on the IV pole when my husband went to go help me take a shower and we had to leave it there until the nurse came to change my painfully infiltrated IV for the 3rd time in 4 hours.

The conversations the chronically ill have amongst themselves will always be different than those they have with the healthy. Because the story about how your sister/mother/brother/uncle/past distant cousin had cancer and is now in remission so you "understand" what I'm going through- just isn't really true. Appreciated, but untrue.

I am fortunate to have an awesome support system- healthy and sick warriors. When I first got diagnosed I knew no one else with Scleroderma and it was hard- very hard. The internet is a wonderful thing for connecting people and for that I am grateful.

Truth is, no matter who the conversation is with, I feel that if at least I can find some comfort, peace, or laughter in the situation then that's all that matters.

Sweet & Sour Summer

So much to write about. So many ideas. So many topics. So much to catch you up on. Where to start? I considered doing several posts on a variety of topics, but have decided instead to condense my thoughts/ranting and ravings and simply recap some of the sweet and sour moments of the last several weeks:

The Sour

1. IV Flolan Treatment: After the second surgery(amputation) on my non-healing finger tip ulcer my rheumatologist thought it was a good idea to go in for another round of flolan. I don't think I've written much about this treatment, but...basically...IT SUCKS. The effects of the treatment itself aren't so bad..some headaches, nausea, dizziness and well the worst one is excruciating but very temporary jaw pain when you salivate. Eating is quite painful while on this medication. But the hope is that it will improve blood flow and thus heal my finger and the ulcers once and for all.

However, what's really the worst part is the fact that I have crappy veins- so during the 5 day stay at the hospital,  I had to have 7 different IVs because they kept getting infiltrated...if you don't know what I mean by that just imagine someone pumping a stinging,  burning liquid into your veins. The IV tube thingy basically breaks inside your vein and it hurts like hell. I had asked to get a PICC line this time around, but to no avail...nurses didn't know what I was talking about and insisted that my veins couldn't POSSIBLY be that bad...yes. they. are. 

Regardless, I got through it. Like I do much everything else. And I was so grateful to have the company of my husband, my mom and a few of my friends that stopped by to bring me goodies. So, that part was a SWEET!

2. Lupus Flares: So, now that I am a bit "lupusy" I get to deal with lupus flares. Which, in my opinion are so much worse than Sclero flares. At least with sclero all I get is really tired and some mild muscle soreness- like as if I'd worked out too much. Lupus flares? Whole other story. Joint pain and swelling. Stiffness. Fatigue. Shortness of breath. Rib pain from lung inflammation. Chills. Fever. Blegh. And the worst part is, I'm still trying to figure out what triggers my flares, so as of right now they just happen. Go to sleep feeling fine, wake up swollen and in pain. No fun. And I never know what joint(s) will be affected. So..one more thing to learn to manage, accept and deal with. 

3. Toxic Drugs= No baby: Well, due to the fact that my lungs refuse to heal themselves and other drugs have not been helping...I am back on the dreaded Cell Cept. My doc was trying to be considerate of the fact that Lupe and I were still trying to get preggos so he was willing to just try and increase the Imuran (a safe drug for pregnancy) to see if that would do the trick. But, when I told him that I just wanted to get rid of this annoying chest pain and inflammation he said I had no other recourse than to get back on the Cell Cept (actually he wanted to put me on methotrexate and I said hell to the no). 

I was on CellCept pre-trying to conceive and I responded really well. Helped get all my symptoms under control, I was running, still working out in the real world and felt overall great. Was also able to get off the prednisone. So, I know the drug works. I know it allows me to lead a relatively "normal" existence...it does however...prevent me from being able to get preggos. Well, at least I shouldn't get preggos while on it. Lots of risks to the fetus. And as much as I KNOW my health comes first, and I shouldn't be selfish and put mine or a baby's life at risk and "don't I want to be healthy" and blah blah blah...it still doesn't stop me from wanting to be a mom. From wanting to prove to myself that my body can still do SOMETHING right. Other sclero patients (sicker than me) have gotten pregnant and had normal, healthy babies and pregnancies. Why can't I? So, it still doesn't stop me from feeling like a failure. 

I've spent the last three years trying to get healthy to have a baby (hell just get pregnant again) and all I've managed to do is get sicker. So, I have no choice but to suck it up, take the meds (for at least 6 months if not more) and then reassess my situation and decide if it's safe to try for a baby. It's been a rough few weeks trying to accept this, but I will focus my efforts and energy on other things: work, writing, travel and just enjoying my marriage. You win some, you lose some...but this fight is still not over. The Mendez's WILL procreate! (We're too cute and talented not to)

4. Kany West- is stupid and needs to go F*!k himself. To understand why, watch this insulting and awful video HERE. Don't humiliate disabled people. PERIOD. I will not waste anymore energy on him.

The Sweet

1. Finger Healing- My fingertips are actually healing! My stitches came out earlier this week and the doc said it looked good so far. Risk of infection is minimal at this point and aside from some physical and occupational therapy sessions it is on its way to being ok! I have been put on Viagra (does not do for women what it does for men though...this is for blood flow) and that seems to be helping. Haven't had as many Raynaud's attacks since I started it. And the new ulcer that had developed on my left index finger is also drying up and healing. (yay for small victories!) 

I actually think my finger stub is kind of cute: (pics below may be too graphic for some readers, scroll down with caution)

 

 2. Jenny's Fashion Show: My sister's designs got selected to be a part of an art show in San Antonio!! I couldn't be more proud of her! She is an awesome designer, super talented and hard working. And...the coolest part of it all? I get to be a model in the show! I'm excited to rock her new designs and support her as this is a great accomplishment. If you're going to be in the San Antonio area on September 25th, you need to be there!

Some of her dresses

3. Scleroderma Foundation National Conference: I know, I know, this conference happened like ages ago (July 25th-27th) and I had yet to blog about it. Sorry! I've been dealing with this stupid finger for the last two months and it has stolen most of my creative energies for writing. Anywho...it was a great experience. I was able to connect and meet with some great people from all over the world, made some new friends and learned a great deal about scleroderma research, new meds, treatment options etc. 

I will say, it was a little overwhelming and exhausting to spend 2 full days doing nothing but talking about pain, pills, symptoms etc. and telling my story over and over, but it felt good to know that there is a community of folks out there just like me. And that overall, I'm handling all of this fairly well. (Many people are so sad, which is understandable..but at some point you just have to try and stop feeling sorry for yourself)Being at the conference reaffirmed my desire to keep up with my blog, finish my damn book (about my sclero journey) and just keep trying to help others with chronic illness and pain. 

At the Beach

It was also just a really great mini-vacation with the hubs (the only one I got all summer!). We went to the beach, ate yummy food, cuddled, explored the city and had a grand ole time. You know, never thought I'd say this...BUT...I really like California and if I had the means to live there, I think I would. (My hair looked fabulous the entire time I was there! Weather was amazing!)

4. Pregnant People: Even though I am not one of them, I am truly happy for all the ladies in my life that have recently shared the news that they are expecting or are about to POP! Congrats to you, babies are awesome and I can't wait to meet all the little ones very soon! (I'm not one of those bitter chicks- not anymore- I understand that every woman has her own fertility journey and it's useless to compare. Every "body" is different. I can be happy for those who have realized a dream I pray for daily, maybe some of that good Karma will come back to me-I can only hope.) 

That is all for now! Next time: a post on the types of conversations sick people have with healthy people vs conversations they have with other sick people-promises to be a post full of laughs. :) 

Hugs and chocolate!

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.

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 styling..in 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."