Friday, October 10, 2014

Little Happies: New Things

"Don't fear failure so much that you refuse to try new things. The saddest summary of a life contains three descriptions: could have, might have, and should have."- Louis E. Boone

It's been a minute since I did one of these, and I am trying to force myself to write as often as possible...and I'm getting nowhere with my memoir right now (mostly cause I'm having a flare up today)...SO instead of focusing on the negative and what I can't do...I thought I'd share all the goodness that's happened in my life recently...so...HERE GOES!


1) My finger is HEALED! Can I get an AMEN?! Scab is off. Physical and Occupational therapy is going well, and the Raynaud's attacks are becoming less and less painful and less frequent. Joy to the world!!!



2) I have decided to embark on a month long journey of trying new things. I will turn 30 in less than a month (November 6th) and decided in late September to spend 30 days trying 30 new things. I'm only on day 15 today and I think I've tried over 20 things, but I lost count. My goal is to try at least one new thing a day...and so far...it's been a A LOT of fun...even when it doesn't go so well. 


A few things I've tried:

  • Modeling
  • New dinner and dessert recipe
  • Bought a new CD (Ed Sheeran-A-MAZE-BALLS)
  • New tapioca tea flavor (Passion fruit- tart and tangy but good)
  • New experience with the hubs (Mercer arboretum) 
  • New coffee shops 
When it's all said and done, I will dedicate a very long post to how it all went and all the new things I tried! For now, I'm just having fun experimenting with new things big and small. :) 

3. We are house hunting! After my car got broken into AGAIN last week, I took it as a sign from God that it was time to finally get the heck outta dodge. I'm actually super excited to go through the "stress" of finding and buying a house. Probably because we are not also trying to make a baby. So all my energy is on the house hunt and it's been fun so far! We also got pre-approved for more than when we were house hunting the first time, so that makes me REALLY excited! Wish us luck..will keep you posted!

4. I've started writing again- my memoir that is. I have a concrete plan of action, a good outline, chapter titles and a clearer vision of what I want and how it's going to end. This is a great leap forward for me! I want to try to write almost everyday, but it's proving to be quite the challenge. However, I have vowed to at least work on my writing career everyday..so that could mean anything from updating my website and blog- which I did- notice the new colors and layout? (I'm trying to keep my "brand" consistent) Or it could mean researching writing residencies or workshops. Or, on really good days, it could mean actually writing a chapter or two. Regardless, I am committed (that's my therapist's word) to my writing career and to achieving those goals. 

5. The CellCept-despite my aversion to it- is actually working. (I knew it would- always does) I feel so much better. Stronger. Healthier. No fatigue (except on flare days). No pain. I hate that it makes me feel so good, so normal and yet can be so dangerous. But this is the "pill I must swallow" (pun intended) if I ever expect to get healthy enough..for well..anything. I'm happy I feel better overall and am looking forward to a much better decade ahead. 


Well, that's it for now folks. Just wanted to share a quick update and let you know that I am well and hoping it stays that way for awhile. I deserve a break! Be well everyone.

Hugs and Chocolate!


Friday, September 26, 2014

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.



Wednesday, September 17, 2014

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!