Hands of Stone
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I am participating in the Health Activist Writer's Month Challenge.  Each day I will be posting a blog based on the writing promt provided.  Wego Health Blog is an excellent place to find helpful information and to blog if you enjoy writing.  I am looking forward to sharing my own blogs, but more importantly reading the blogs of others.  We have so much to learn from each other.  

Hope in a Time Capsule
Written April 1, 2012 Pacific Time.

Here is my hope: That Scleroderma, Sarcoidosis and Autoimmune diseases have gone the way of Polio. But, there will always be some disease or chronic illness and there will always be people doing their best to cope with what life has dealt them. So for a health time capsule to be opened in 2112, I would like to submit my Don’t Panic Kit.

 

I call it, “My Don’t Panic Kit” because Douglas Adams is one of my biggest inspirations. In his five-book trilogy about a book, “The Hitchhiker’s Guide to The Galaxy”. The cover has only two words, “Don’t Panic”. I can’t think of better advice when in crisis or under stress. If anyone has something better, I have yet to see it.

 

My kit is housed in a shoebox, constantly redecorated with updated pictures and quotes from movies or some of my own. Inside contains items that remind me of things most important to me in life. All items are for inspiration. What am I trying to inspire myself to do? Mostly, stay calm. When I get anxiety, the lymph nodes in my chest swell up. Actually, it’s the granulomas in the lymph nodes in my chest that cause my lymph nodes to swell.  It  restricts the ability of my lungs to expand, making it difficult to breath. When I have difficulty breathing, I don’t get enough oxygen into my blood.  Thanks to Raynaud’s, circulation to my fingers, toes, nose, and ears, is constantly compromised.  Oxygen lacking blood makes it worse. Then things really spiral out of control and a flare can happen and I end up in the hospital on IV antibiotics, but I digress.  

 

Back to my Kit, here are the contents:

 

Pictures of my son.

A copy of The Hitchhiker’s Guide to the Galaxy.

Jimi Hendrix CD

Pictures of my family and friends.

My favorite greeting cards I have received from special occasions.

Piece of a key chain given to me by a friend who died.

My journal and a pen.

3 Guitar picks

The rest will remain private.

So I offer to the future a look at how one person copes with the rough times of the early 2000’s. Maybe someone having a hard time in 2112 will find this useful, and make their own Don’t Panic Kit, to help them through the rough times.  So that they may find calm and experience hope.  I don't know what the future may hold, but I wil never loose my faith in hope.

 

It really doesn't matter how any of us feel about Dick Cheney.  The core of the story is he received a donor heart because he was a patient who needed one and he was healthy enough to receive it.

I think that’s a key issue many are overlooking. Mr. Cheney has access to great healthcare.  His health was monitored regularly. He did not have the stress of worrying about a shrinking income or loss of benefits due to his heath. He did not have to worry about being a burden to his family.

I see speculation of strings he may have pulled. Honestly, I think because he had access to good healthcare, like I do, he was able to survive and be well enough to receive a donor heart. His health has been closely monitored. In other words, he received all of his necessary check-ups and was given ample time and sufficient care to ensure his recovery from each heart attack.

So, I think we can use Mr. Cheney’s story as an example of what is possible when better than average health care is available. That’s all. Imagine what we could accomplish if patients all over the United States had the same quality of care.  Other than wishing him a good recovery, and acknowledging the benefits of high quality medical care- everything else is just noise.

I made some walk videos.  After seeing a fellow patients’ video, I realized something many of my friends and family already know- but love me anyway.  That’s entirely not my point, just my own issues. My fellow patent’s video- she inspired me, plain and simple.

 This isn’t about how bad I think my video is compared to a fellow patient’s, quite the contrary.  Does it matter why we walk?  No and yes.  The most important thing is that we walk.  Sharing why we walk, no matter how silly, serious or honest we want to be is an act of bravery.  So with that rationale, it important to share why we walk.   Should we ever be afraid to share why we walk, no matter how different our reasons?  No.  We are Chronically Awesome.  The bravery part is a given. Yep, we're braver than we ever imagined.  Just because we don't always feel that way doesn't mean it isn't true.

 

As for friends and family sharing, it is important that they share why they walk as well.  Why? As I mentioned earlier, my family and friends know everything about me and love me anyway.  And I love them.  Make a video, share it.  Tell your friends and family.  They love you and they will love your video. Be serious be funny but most of all, be YOU. Now get to clickin'- inspire me.

:-)

Karen Vasquez

 

PS: If you are still reading this you are not making your video.  Tell your friends. Now go, make that video!:-)  

And now, a shameless plug for my day job:
Show your love with a like on Face Book or follow @WalkForCure on Twitter.
(Don't judge me!)   

Happy Friday Everyone!

I wrote a guest post for www.whatthejules.com

Please check it out and the work of my fellow ChronicallyAwesome Bloggers.  

Tell your friends!  

With great many new visitors, I am reposting pieces from Scleroderma, Sarcoidosis and Box Wine.  Strange thing, I started this year with a new laptop and desk.  How may of our own dreams come true without us ever looking back to realize it. Thank you for reading and sharing.  

My Subconscious. Is It Really a place one should visit? 
3/17/2011 

I was up at 2:55am this morning.  I went back to bed after an hour.  I should've made coffee and stayed up.  I fell back to sleep and had the strangest dream.  I was living in a big house with my ex-husband.  In my dream I was delivered a ceiling fan and a coffin, both made by IKEA. 
I removed the outer box of cardboard the coffin came in and marveled at the beautiful Teak wood box.  I opened the lid and found a release button just beneath the lid handle.  I pushed it with normal fingers (remember, this is a dream) the lid released from the hinges on the opposite side.  I started pulling it toward me like those coffee tables that rise up to become giant TV trays. I continued to pull the surface toward me, and then 4 legs released from the underside lid of the "coffin" and began to straighten.  It started to stick and I walked around to the other side of the now "table". I saw a release lever and instinctively pulled it.  The top detached from the rest of the unit. The top of what was a coffin stood alone as a beautiful teak desk. A coffin only has one use, but a coffin that converted into a desk- that's just plain genius.  Thank you IKEA!"   I was so dumbfounded; I failed to notice ornate carvings that resembled hieroglyphics around the edge. I looked down at what would've been the bed of the coffin and saw the same ornate carvings but the bed was replaced by what appeared to be bookshelves.  
In front of me stood a desk with one drawer in the center of the carvings. I opened it and found a laptop computer.  I quickly went into a nearby closet and pulled out a comfortable office chair I had apparently been saving for such an occasion.  
Then, my alarm went off and I woke up to three dogs giving me the stink eye.  They wanted to go to the park, and they wanted to go now.  
So, what was this post about?  Do I think I’m going to die because I ordered a dual-use coffin from IKEA?  Am I somehow willing the Universe to send me a new laptop and desk?  Maybe, it’s not like I’d say no to it.  Could it be an escape my subconscious is attempting to create because while I was up for an hour I watched the news and it was so packed with despair my brain wanted to make me feel better with a new desk and laptop?  Maybe.  What’s the deal with IKEA?  I’ve never been to an IKEA store.  Does this mean I need to go visit one?   What became of the ceiling fan?  Why do I even care?  Anyone have comments or interpretations?  
On a side note:  My ex husband did appear in my dream but I have seemed to block that part out because I can’t remember what exactly happened.  I just remember he was outside the house.
So, what’s new with you?

In the late 80's it was all about hair bands and the "X" in Sex.  Now its the '10's and it's Sclerodactly & the "S" in CREST.  (Click here to see a picture of my hands) Oh how times have changed. (& no I will not post a picture of me in animal print spandex) 

Here are some things I miss:  
Clapping
Holding hands
Throwing a baseball

I could go on and on but the truth is, I have spent enough time pining over what I can't do.  Here's what I can do:
Clap with my wrists
Hold fingers
Play catch with a bigger ball.
Yoga
Spinning
Play Legos with my son
Get the best parking spots
Use my expanded vocabulary that includes many latin based words
Appreciate the metric system (Why are we NOT using it? So much easier!)
Type like Peter Jennings did, with two fingers. 
The ability to tell if a CD case is empty just by picking it up.  That has nothing to do with Scleroderma but it is an underappreciated skill. 

My point, I can choose to focus on what I can or cannot do.  Both lists would be right.  The list I choose to focus on does make a difference on how I face my health issues when I wake from my dreams of normal hands to the reality of the hands I have.  

I can't believe I found this video: Enjoy the spandex and younger KISS without make-up. 
 

 

Today I received a letter from the Veteran's Administration to inform me that my Sarcoidosis is not service connected.  The reason: there is nothing documented in my service medical records showing any symptoms.  There is not finite cause of Sarcoidosis agreed upon, but it has been linked to sub-standard building materials or exposure to chemicals.  

When I was 20 on 1991, I was an E-3 in the US Navy stationed aboard the USS Yellowstone.  I worked  in Boat Division.  At the time, women were still being integrated into shipboard life.  Often, women were not welcome, not  considered equal and constantly sexually harassed. I look back and ask myself why I stood still while being felt up in rank by a senior enlisted division leader.  I guess I thought it was the norm at the time, but why would I ever believe I was not as valuable as my male counterparts?

I was a young child in the 1970's.  Women were fighting for rights to equal pay in the workplace and to be treated as an equal.  My mom could not buy a car without the consent of her husband.  In fact, when she was 19 she could not visit her doctor for ANY medical reason without her mother or husband present in the exam room.  My first memory of what I wanted to be when I grew up is this:  My Dad was either still in the Marines, or he just got out.  I was playing with I think was a toy helicopter.   My dad & I were in a room at y grandparents house and I was having a great time.  I remember saying, "Daddy, when I grow up, I want to be a pilot."  My dad laughed and said something like, "No honey, you can't be a pilot. "  I asked him why and he replied, "Because girls can't be pilots."  

Fast forward to grammar school.  We were living at my grandparent's house now and in my room was where the book case.  That summer I read To Kill a Mocking Bird at least twice and there was an  complete volume of The World Book Encylopedia.  I didn't realize it at the time, but that was the summer I feel in love with books.  I went through each volume A-Z.  They has these great diagrams on clear sheets with different parts of anatomy so you could see what each part looked like by itself and then place it over the following page to see where it fit in the body.  My favorite was the section on the heart and vascualr system.  I was amazed by the different ventricles and how the veins and arteries moved througout the body.  I thought, "ok so if something goes wrong with the heart and vascular system, you just had to fix it like fixing a leak".  I knew it was more complicated than that and I wanted to learn more.  I wanted to know what I would need to do to be a doctor.  So, I ran into the dining room to show my parents and my grandparents were there too.  I was so exicited.  I ran in and blurted out, " I want to be a doctor!"  I started showing them the pages until I realized they were all laughing.  I don't rememeber who said it, I just heard, "Karen, girls can't be doctors.  If you sweep the floor right, you can marry a doctor." 

I could go on with these stories but I have already worked it out in therapy.  Those were different times.  It's not that my family didn't love me, because they did and still do, but in our culture women made babies and cleaned the house.  That's just what they knew.  And they taught me whay they knew, it's what parents do.  My point is, until I joined the Navy, I never rememeber anyone telling be I can anything I want if I put my mind to it.  Men in my family often reffered to women as broads, especially one they found challeging or intelligent.  Again, it was what they were taught.  I take comfort now in my own son, who gives me hope the days of women as second class citizens are disappearing. One day he looked at his placemat flippped it over a few times and asked, "Mommy, where's the girl president?"  Yep, that's my boy.  

So back to my story.  After returning from an exteneded deployment during the first Gulf War, I was sent with others from my division to Little Creek Amphibious base to do bodywork on the small boats in our division .  The officer in charge did not believe women could work as hard as the men and since being sent there was considered a "Privaledge" to the alternative of training at Guantanmo Bay, the other female assigned with me were ready to prove the man wrong.  But you see, there was a problem.  Our division did not have respirators small eneough to fit our feminine faces, so the OIC decided we would compete, but funds would ony be spent on our safety equipment if we could prove our worth.  (See, Transvaginal Bob is doing nothing new.  We just have a 24 hour news cycle)

So, we worked 14 hour days using dusts masks, cotton coveralls, gloves and duct taped the cuffs of our shirts and pants so that material could not get inside pur clothes.  I loved my job.  I loved detailing the woodwork on the Captain's boat, learning to build a mold to create a patch of fiberglass to smooth out the dents in the hulls of the boats.  At the end of what I think was three weeks working 14 hour days seven days a week, I painted a red waterline on the captain's boat- freehand.  After watching me paint this line saving time by not having to use tape or touch up, the officer in charge finally said, "Wow, you broads sure can work hard.  You get to stay."  He immediatly put in the paper work for 2 respirators.  We were thrilled we did not have to go to Gitmo and would get to stay behind and hang out in Virginia Beach in our offtime.  Oh yes, we had proven worthy of the $40.00 to be spent on each respirator.  

While working without a respirator in an enclosed bay, I rememeber coming home after work sick as a dog.  Every day after work, the other female in the division and I would help each other remove fiberglass from our skin with masking tape on our backs.  We would take cold showers after to rinse it out of our skin.  I rememeber having a constant sore throat and runny nose.  Once we got the respirators, the sore throat and runny ose went away, but we still had our cotton coveralls and no matter how many layers we wore beneath those coveralls, there would always be fiberglass in our skin.  

We were exposed to many things in that boat bay.  That was also the year The Navy was removing lead paint from it's boats and replacing it it non-lead based paint.  We were in the same room with men in full hazmat gear sanding off the lead paint.  

So as I read this letter telling me there is no history in my medical record about symptoms of sarcoidosis and no one thought to do a biopsi until 2007, I am not discouraged.  Sure, I'm a little irritated, but this is my first try.  Unfortunatly, it is up to me to make my case.  Funny, it's what happened with my low disability rating the first time I submitted my disability claim for Raynauds.  I just realized my service connection does not say a word about Scleroderma.  I have more work to do with that as well.  

Why would I pursue further service connection to my illness when I am already at 100%?  I could tell you all because it's about the people who are not yet showing symptoms, but will.  I could tell you it's something as nobile as I'm doing it so that those who come after me do not have such a difficult time.  Nope.  I'm just pissed.  I have two major chronic illnesses that robbed me of so much.  I feel helpless and doing something to show that I was not a "Sick Bay Commando" or just a hysterical female feels like I'm doing SOMETHING about some things I so desperatly wish to have power over.  And yes, even though anger is my motivation, someone will else will benefit from my work.  

 

Tonight, I watched the 20th Republican Debate.  I hope it's the last.  It will definitely be the last one I watch.  I kept wondering why the moderator didn't ask any of them about Syria and those who died there.  I wondered about why they never asked these men about Viagra & vasectomies.  I kept hearing them try to defend their positions on what a woman does with her own body, but all I heard was noise.  Like someone saying, "Look over here!"  It felt like a giant pander-fest.  I heard them pander to fear.  I think fear of an era gone by they try to  hold so tight their fingernails are coming loose.  How can one compare birth control with "infanticide"?  That part sickened me.

I try to keep up with political issues because they do affect  many with chronic illnesses like mine- Scleroderma & Sarcoidosis.  I have trouble wrapping my head around the idea of cutting off health care to fellow human beings.  Why are we fighting to prevent universal health care coverage to all?  I hear so many in the public eye claim they follow the teachings of Jesus, yet they vilify the sick and the poor.  I hear people in my community talk about how this country is being ruined and it's because of the sick and the poor.  They never come out and say it- they just say things like, "I want to have a say where my money goes"  Then I think to myself- because I just can't speak up about it after being threatened physically, "Really, you don't want money to go to things like roads, schools, school lunch programs, traffic lights, clean drinking water and safe food? How about research for diseases that kill people?"  

So, I'm going to keep paying attention and reading more, but I'm going to focus on something I think might be easier:  Trying to help raise awareness and funds for Scleroderma, Sarcoidosis research and life with a chronic illness.  I think we are closer to finding a cure for Scleroderma than those running for office are closer to actually govern in the interests of this countries citizens.  First it was, let's make government so small it fits in  bathtub and now they they want to put government into our "Lady Business"(Thank you Tina Fey for that term) Are we really discussing the need to stop allowing birth control in 2012?

It's not about Jesus or babies or the best interest of citizens,  It's all about money.  Money helps.  It's nice to have and can get you things, but that's all it is.  Money doesn't love, listen or comfort anyone with a hug.  
It's late and I'm having a bit of a rant.  Thanks for taking the time to read this expression of my thoughts.  

Hello everyone!  Thank you for continuing to read my blog.  I'm in my new home, have my new car and recovering from the upper respiratory infection that came on the minute I took my first deep sigh of relief.  

The changes that provided opportunities in the new year came at me fast, furious and required immediate resolution.  (If you are confused, check the last few blog entries for 2011.)  Instead of running around like a nut, I took my time looking the right home and I found it.  I did the same thing with my new car.  All plans executed in a span of two weeks - with an infusion in between.  It wasn't done alone.  I had help from my brother and cousins.  After having to relocate so many times in the past three years, I feel that this place is my home.  I will move out after my son graduates high school to move closer to the ocean.  Until then, this is where I will stay.  This is the best I have felt about moving into a place since I bought my first home in  La Crosse, Wisconsin.  

I hope everyone has a as good a 2012 as I am having.  Sure the Mayan Calender says the world is going to end, but is it really?  Maybe it's the end for many to wake from a fog, state of misery or confusion.  A new beginning- like waking up in the morning and feeling its a new day.  

Yes, I'm still surviving Scleroderma, Sarcoidosis and chronic pain daily.  But it's a new year and with it comes hope.  I look forward to learning from my readers, fellow bloggers, Tweeple and those I meet in person.  I still have much more to say about Scleroderma, Sarcoidosis, Veteran's Issues, Healthcare Reform and of course, it's an election year.  Thank you in advance for continuing to read and help raise awareness to get closer to a cure to two very nasty diseases.  

As you may have read, last year for me ended with a bang.  The bang of my car into the rear end of a truck.  Luckily, no one was hurt.  The beginning of this year not only begins with a new car for me, but a new home as well.  

I have my lease with a rental management company, not the owner of the home I am moving out of.  Since I have moved in, my oven has been broken as well as my stove.  For the last 5 months one of my bathrooms continues to go unrepaired and a few days before Christmas, a chandelier feel from the ceiling hanging three feet from the floor when my brother came home.  This chandelier was over my son's play area.  The rental company had been attempting to contact the owner to get approval for many repairs and gettong the run around.  Finally, the owner answered, only to offer me a $100 discount on my rent to continue to live with the stove, oven, bathroom and chandelier- now on my staircase landing- because it is still connected to the ceiling.

Needless to say, there are lawyers involved and I called the Fair Housing Board.  I followed their advice to the letter.  I'm also following my conditions of my lease to the letter by leaving the house clean, cleaning the carpets and going through the check out list with the rental company.  This way if the owner decides to file a claim in small claims court, she is wasting her time.

The best part about this is that my lease is with the rental company- not the property owner.  The rental company will be terminating their contract with the owner later this month because of her lack of action on habitation issues.  I have found another great place, significantly lower in rent and near my son's school with another rental company.  Even better, the rental company I am leaving is giving me a great reference because my rental history with them is excellent.  The owners of the new home are on vacation so I will know if I got the house by Tuesday.    It's looking good so far and I'm staying positive.  If this house doesn't work, my current rental company can get me into any one of their houses on their rental list.  I just really like the location and floor plan of the house with the other rental company.  

Wednesday, I hope to take possession of the new rental property. Yep, the day after I get approved by the owners.  I like to think of it as having a positive attitude.   I have to be out of my current home by midnight on the 16th- of JANUARY.  How will I perfrom this magic trick?  because of my car accident, I will be able to scrape up enough to pay a pack and move company.  i have an appointment for an estimate.  My new car will be an A/B car with safety essentials and great gas mileage.  

How am I handling this?  Well, denial helps but I am starting to accept it by packing a little every day, preparing my son and myself by making this an opportunity.  I call it, our "space adventure"  because we are on an adventure to find a new space to live.  I think such a simple explanation is helping me just as much as I see it helping him.  

This week, I will be focusing on the move.  Once I'm moved, I will begin shopping for a new car.  Did I mention I have my Remicade infusion this Thursday?  Yep, three hours to take a break from moving.  I will leave energized.  Mind over matter.

I'm following the advice on the cover of the Hitchhiker's Guide to the Galaxy:  DON'T PAINC.  Seriously.  Why panic when we all know the meaning of life is 42?
 

 

So, I tried some new eyeshadow.  I thought , Wow, it's so pretty and sparkley- dare I say, "Shiny!"  Long story short, my eyes swelled up like tomatos!  Saw my optometirst to see if any harm was done and all is well.  A special thanks to my Aunt Vicky who came to my rescue with drops and ointment yesterday.  It was awful, she was wonderful.    
Curse you Glitter!  

 

Yes, that's exactly what I thought while driving myself to the ER in my beautiful rental car.


 
So yesterday on my way to my Doc's appointment at UCLA, I had a bit of a fender bender. After driving my beautiful rental car (where the above quote popped into my head) to the ER at the VA Hospital.  

After x-rays and careful evaluation by the greatest traumatic inuiry doctors out there, I was discharged last night with a "soft collar" and some muscle relaxers. I am resting comfortably today and following doctor's orders to the letter and my body should be back to normal in a day or two.

If you haven't had a chance to check out my archives, now might be a good time because I'm taking the next couple of days off to recoup.  If you do check out some older posts, I hope you enjoy and I would love to read some feedback on how I can do better or if there are any questions that need answering.  If you have been payong attention, you may have seen me considering going back to blogger.  I have decided to stay on this website.  I love it and it really is much better than Blogger for me.  

Monday, new car shopping will commence. My Prius absorbed most of the impact and I am very grateful no one else was hurt. I have to say Toyota makes a damn safe car. I will be shopping for a used Subaru because I want the all wheel drive for snow. Although after walking away from this, I may go back to Toyota- we'll see.

So that's my winter vacation so far. How are you all doing? 

So, yesterday I visited my Rheumatologist at the VA.  Things are going well, but there are some hurdles.  

My Raynuad's continues to get worse in both thumbs.  We discussed my options and this is the route my Rheumatologists and I have chosen to see if we can solve this problem. 
Here are my directions:
Two 25mg tabs of Viagra (Sildenafil Citrate) in the morning. 
One 25mg tab at noon
one 25mg tab in the evening
One 25mg tab at bedtime.  
 
I was a little hesitant to increase the Viagra dosage while staying on the Niphedpine, but Viagra is short acting and I have always been able to count on Niphedepine to provide a steady dose throughout the day.  This morning I took  50mg of Viagra and I have to say that boost of 2 tabs in the morning seems to be helping.  I have not had my usual feeling that the arteries in my thumbs are being choked. It's 3pm and so far, so good..  

I will continue to keep you posted about my progress on my changed medication.  I would like to do more research as well about the options I will have if this medication change is unsuccessful.   

Please rememeber, this is what works best for ME.  If you are using Viagra and it is not working for you, don't loose hope.  Yesterday before seeing my doctor I was sure my run with Viagra would be over and there would be no other options.  There are other options if this change doesn't work.  

Lifelong treatment with a lonterm chronic illness has many roadblocks.  Sometimes we just have to look harder for detours and alternate routes.   

Thank you for reading.  

Just a quick FYI:  
If you are on FaceBook, be sure to visit and like.It is called Scleroderma, Sarcoidosis and Box wine.  As a web page, the Mighty Turtle is much easier to spell.  I usually post links or short snippets and save the researched and well thought out (or so i would like to think) articles for this blog.  

If FB is NOT your thing, I am also on Google+.  click on the link or look for +Karen Vasquez  I usually post idenical in both places so you're not missing much if you quit FB.

For my super smart ass short comments and link posts. I am also on Twitter @karenOvasquez

I also put out 2 publications daily.  One for Scleroderma, ScleroDaily and another for Sarcoidosis called the SarcDaily.  If you are not on twitter I always post a link on FB after I edit it.   

 So, now ypu know where I can be found.  Like me, add me or follow and help raise awareness and learn about  Scleroderma, Sarcoidosis, self advocacy and what it's like to have have a chronic illness that doesn't have me and you.  

Originally posted on Scleroderma, Sarcoidosis and Box Wine in March, 2011. 

Living With Fire Marshal Bill (AKA Metaphor Much?)

I am allergic to my own dogs.  I thought I could ride this out- dogs don't live forever, right?  

The truth is, now that I am on my own, I'm not capable of taking care of the these dogs.  They deserve to be snuggled with more and scratched often, which I cannot do.  Nobody likes picking up waste, but it's something I'm not supposed to do.  Thanks to Raynaud's and frequent past infections, infections are a big risk no matter how careful I am.  Sure I could have my 7 year old do it, but there is much more to this than just waste and i just can't leave it there while he's at his dad's.  There's accidents on the carpet, dander and frequent carpet cleaning.  I am learning how to really handle a Rug Doctor and i'm practically on expert on dog urine stains.  I have a hard enough time just doing the dishes- my priorities were not in order here.  

How do I tell a seven year old his dogs need a new home because his mommy can't take care of them?  Oh, wait- I just did.  And yes, it does suck.  I'm a little disappointed in myself for not doing it sooner.  I AM the parent in this relationship.  I was so worried about disappointing my son, I shirked my responsibilty as a parent to BE the grown-up.  Now it's done and I feel better.  It will be hard to find those dogs a good home together and I have accepted they may not get to be together.   

The thing is it doesn't matter if I have Scleroderma and Sarcoidosis.  This is something normal.  Yes, normal.  Something happens in our lives and a change needs to be made.  Being a grown-up means I have to make these changes no matter how heartbreaking they may be, that's just life.  So I told my son and made it my goal to find a home for my dogs before the end of next week.  My son is heartbroken, but this is a good teaching moment and the reasons just keep popping into my head.  You see, my son has seen me in a relationship where my health was not as important as my own dogs.  That is no example to set for my son.  He needs to understand that if he share's his life with someone, making changes for their health is important and if there is a problem it will not just go away.  Changes need to be made, no mater how devastating.  I think the greatest lesson will be that heartbreak happens and when it does it's not the end of the world. We go on and make the best choices for our health and family.  Once my son sees my strength increase because of my "lighter load" of life without the dogs, he might understand that difficult changes are worth the effort.  There's always a chance he may not see the value of change right away, but at least I will have planted a seed.  Most of all, I will have made the choice that's best for my heath and family.  Parenting is leading by example.  My examples are not without fault, but every now and then I get one right.

Thanksgiving tips for those with CREST, specifically if you have the “E”, the “S”  and Kid(s) in Tow

These are tips that work for me.  What works for me, may not work for everyone.  If something doesn’t work for me, often another idea springs from my failure and I go from there.  In the interest of saving us both some time, I’ll just share my successes.

 

I have an ADHD 7 year old, symptoms of CREST such as severe Sclerodactily, Hiatal Hernia and a scarred esophagus.  These are a few tricks I use so that my son and I both enjoy large dinners and get-togethers while I stay independent and keep my sanity.

 

1. - I make my son’s plate full and give myself small helpings.

Because I have to take small bites, it takes me forever to eat.  A large plate for my son keeps him busy and once he’s settled, I can take my time and not hurry.  Because I took small servings, I can keep up with the rest of the table.  I feel really awkward being the last person to finish. If my son can’t finish what I gave him, I’ll have him give me what he doesn’t want if I’m ready for seconds.  (Yes, I will eat from my kid’s plate.  Bite me.)

 

2. - Stay away from carbonated drinks at the table.

I’m not going to lie.  I love Coke and Pepsi.  I enjoy caffeine and carbonation in moderation.  I am no perfect patient and after nearly 20 years of this, anyone who doesn’t have what they’re not supposed to every now and then is a big fat liar.  I usually have my soda before dinner so it’s out of my stomach.  (It’s all about the planning babies)  At the dinner table, I drink water.  It helps me get food down my throat and the lack of bubbles keeps my food from coming back up during the big meal.  (Score points from my speech therapist)

 

3. -Pay no attention to the “looks” you think you are feeling.

My hands are a mess.  My fingers are contracted. When cutting with a regular knife, I drop my silverware regularly.  It is never louder to me than when sitting at the table during a holiday meal.  That “feeling” of others staring was more my own paranoia than reality.  There is so much more going on around the table.  I used to just keep my head down and get sucked into feeling I was being stared at.  Then one time- I don’t remember when- I just picked up my silverware, moved on. I looked up and realized everyone had not stopped to stare at the freak I felt like.  They were talking and having a good time- and I was missing it!

 

4. - Try not to get sucked into talking about your health.

People ask us how we are doing because they care.  I feel like because I made it to dinner, I’m not dead or dying, so I’m doing great.  Ever get those questions from well intentioned relatives about how you are “really” doing?  I do.  I talk about what I CAN do.  If I did something as simple as take a long walk, watched a movie or even did yoga (hey- it happens sometimes).  I have discovered the key is a short answer.  I try to keep it simple and honest.  Not everyone needs to know test results or meds that I am on, it makes even my head spin.

 

- Stay thankful my friends.

At family gatherings, I see people I sometimes haven’t seen in years.  They want to know about me because they care.  I have become so accustomed to dealing with others in the medical community; I can make things sound worse than they are.  Don’t get me wrong, I do not want to minimize how serious, painful and for lack of a better term, phenomenally “F’ed” up how bad Scleroderma, Sarcoidosis or any other chronic disease is- my point is, it’s chronic.  We are all either in the process of learning to adapt or have adapted to living life with a chronic condition.  Some call it Chronically Awesome, The Spoonie Life and more.  No matter what we call it, it’s ongoing for us every day.  I have accepted my family doesn’t see me every day and they are trying to cope with knowing I live with two very serious diseases.  I may appear different to them since the last time they saw me.  Maybe I gained or lost weight from my meds or my hands have curled more or I walk slower.  The short version;  they are worried and scared.  I used to get so upset when someone would notice something different about me, but I see every day.  I have to remember to be be thankful I have a family that does care.  I remind myself that everyone is going through something.  With the questions I get, I have to remember it’s important to ask my family how they are doing.  Not only does it take the subject off of my chronic illnesses and feelings of self consciousness, I love hearing about what’s going on with my family.