Surprise! I have toes!

I have been attending Krav Maga consistently and something happened tonight.

You know that “Soldier Crawl”?   I had modified it using my forearms and knees.  Today,  I was crawling, and quite naturally, my toes took over for my knees.  It felt natural, and surprised me.  It only happened twice, but it happened.   I did the “soldier’s crawl” as it was supposed to be done,  for a few moments.

This is kind of how I felt when realized my footing was getting better.

 

I tell myself every day that if I keep moving, my range of motion will come back.  I know it will never be what it was before, but there is potential and now realistic hope my range will improve.

I had another revelation: My toes are not useless.  They’re just fused and different, but they are not lost.

I’m encouraged, exhausted and sore.   The good kind of sore.

Scleroderma, Sarcoidosis and Skin Care?

All my travel, education and maintenance for The Mighty Turtle, is covered by me.  I seek no sponsors, because when someone writes a check, there is an obligation of loyalty for their support.  That’s something I put upon myself, but hey, I like sleeping at night.

Here’s why I don’t seek sponsors:  I am free to say what I want.  I can support, or not support any non-profit I wish based on my perspective as a patient.  I can make jokes that are more adult than PG-13.  I did consider becoming a non-profit, but I want all tax deductible donations to go to research and eduction by existing non-profits doing outstanding work.  I just do not see a point in the wasted expense of  corporate fees for my silly blog.  The thing is, I’m not just a blog.  I volunteer my time and I attend education events.  These things cost money.  I am “lucky” enough to have disability benefits from the Veteran’s Administration and access to world class healthcare, but I’d like to attend fundraiser to show those who contribute that people can lead productive lives once symptoms are under control.  I am in a remission-esque state.  My prognosis is good and I’m feeling good.

I have had a lot of kindness bestowed upon me by people I have never met in person, who send well wishes, prayers and thoughts.  I have also met many who do not have access to health care.  Good people fighting for disability benefits, and vilified by the media and neighbors for seeking help while fighting for their lives.  And once they get help, they are “awarded” a pittance that is gobbled up by medication copays, food and rent.  And while they live on these benefits, they endue ridicule from people who think they don’t deserve it.  It’s not that there is a majority of douce nozzles who vilify the sick, poor and elderly.  There certainly is an abundance of douche nozzles, but it has been my experience that they are the minority.  Douche nozzles just yell the loudest, so they are the ones being heard.  I want to change that.

The thing about being an activist is, in order to go places and do things, I require money to get to events.  Some activists are lucky to be self sufficient.  Some work a full time job and do activism in their off time.  Some have benefactors or sponsors to help their work.  My problem was, I needed funds to go places and do things to further my mission, but I did not feel comfortable asking for donations or working for a non-profit. I am also in no condition to hold down a full time job.  If I need to rest, I need to be able to rest and recover. Now, I have a solution.

Yesterday, I became a Brand Ambassador or sales rep for Votre Vu.  Everyone has skin, it’s a product line I can stand behind and feel comfortable recommending to others.   I get to use my unique set of skills as a manicurist and beauty school drop out.  Sure, yoga pants and novelty t-shirts are a staple in my closet, but I know skin care.  Working as a Brand Ambassador for Votre Vu will help with expenses to get out, and show the world that high quality health care and the right treatment; not most cost effective treatment, saves lives.

So, in order to get my business going, I have started a Facebook page and Twitter.  This way, I can raise awareness without a bunch of “words from my sponsor” mixing my business with my activism. Yes, they will mingle like chocolate and peanut butter at times, but I will do my best not to make it a regular thing.  

Today,  I am writing about it to grow my business- of course, but I want to make clear my mission: Raising awareness and assisting non-profits without compensation.  I don’t want to be compensated by non-profits because it allows me to work with any non-profit I wish.  I play nice in “The Sandbox” with everyone who is working for cures and making information freely available.  I have the freedom of not competing for funds.  Non-profits have to work to get research and education funds from donors.  I want to help.

So, I’ve taken this post and rambled about my plans.  Thanks for reading.  Please “like” and “follow” where applicable.  And if you have an occasion for a gift or would like to try some great skin care, please keep my Votre Vu store in mind.

Now, back to our regularly scheduled program…

Yes, It Looks Scary, but it Will Grow Back…

I’ve had a wound /ulcer /hole in my knuckle for a few weeks now.  I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.

I have to say, the hole was huge two  days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely.    Inside the hole it’s just gross, but very clean and rarely oozing.  With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words:  I still need to go before the Jedi Counsel.

For those of you experiencing ulcers from impact, calcinosis or Raynaud’s, I’ll post pictures of the wound progression in Pinterest.  These wounds can be scary and insanely painful- I don’t have to tell you that.  I want to post them so you know that you are not alone.  When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally.  Not that these wounds are normal.  I do have a choice to avoid them.  I live alone and I don;t like asking for help and I love to get  out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still.  Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care.  I have accepted it as a very painful inconvenience.  I get a sore, take care of it and roll with it as it heals.  I can focus on how much it sucks, or I can tale care of the wound and focus on life around me.  It took years for me to get here.

A few of my favorite things… and I don’t feel so bad…

 

If you are new to these ulcers, learn to take care of them.  Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape,  Colband and cause.  Yes, stockpile and squirrel away.  Never  turn down free wound care supplies when you can get them.  Saline solution is outstanding for  rinsing wounds.  Saline filled syringes can be reused to help rinse.  In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going.  I am to go before the Jedi Counsel for guidance.

Have a great day everyone!

 

 

PS:  instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them.   They will be up Saturday, but connect with me on Pinterest if you happen to be there.

The bandages always make it look bigger than it really is.  This is quite comfy.  

Krav Maga, Yoga, Scleroderma, Sarcoidosis and Feeling Good

I have returned to Krav Maga Classes.  I kept putting it off because I was so busy, I felt it would be too much.  Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class.  I am working to make more time for it, but easing back into it is the best choice for me.  I love how my instructors help me adapt, and do things I never thought possible.     Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort.  I feel balance balance between my inner warrior and facing the world calmly.

I also do yoga at home using DVD’s.  I plan to  join a local yoga collective and attend classes once my budget is squared away.  Today, I will do a short yoga DVD.  I need to work on m deep breathing.  Not exercising January and February while I moved has made a difference in my lung capacity.  I can’t take those deep breaths.  After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent.  I don’t just feel the flab.  The muscles in my chest become stiff and restrict the expansion of my lungs.  So, there’s that.  And here I am again back at square three.  Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise.  Now, at Square 3, it’s time to make these activities consistent.  I have such commitment issues, bit I am very optimistic about this one.

Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts!  Yeah, I’ll post pictures in June- maybe to help raise awareness.  If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body.  Look, the world is filled with beautiful women of all shapes and sizes.  When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research.  While I’m still here and looking good on the outside, why not use my body to raise awareness?  Look out Curvy Girls!

Have a great day!

For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:

The Scleroderma Research Foundation

Bounce to a Cure

Beyond The Mat: Divine Order.  A post form Temecula Yoga Collective’s Blog about how we are all connected.  Excellent post!

Caring Hands Sarcoidosis Network of Michigan

Supportive Patient Communities:

Treatment Diaries

Inspire

Art by Chris Dean, of Life Your Way

See her comics at Totally Random Shuffle

Scleroderma, Sarcoidosis and Box Wine

West Coast Krav Maga

Introducing… The Mighty Turtle Amazon Store

Through the years, I have found many products that have bee helpful.  Since I will be writing product reviews for items, I thought: Why not link a store to Amazon?  So, here it is.  The Mighty Turtle Amazon Store

It’s a great way to assist those looking for items, to shop and what I earn will help with the expense of The Mighty Turtle.  All my work here is volunteer.   I only wish to raise funds for non-profits researching cures or patient education, so this store is win-win for both readers and me.

Thank you for supporting The Mighty Turtle by shopping here.  I will be writing product reviews for each item, but if you have a question about any product in the store, be sure to ask.  My goal is to raise awareness and save time for other patients.

Pain Management with Scleroderma

 

 

 

If you missed the Treatment Diaries Chat about Scleroderma on 3/5/2013, we talked briefly about the stigma of pain medication.  (check it out HERE

“I don’t want to depend on pain medication.”
Sometimes, it’s what we need to do.
Stop the pain medication stigma already! 

We’ve all said it.   Of course, in a perfect world where debilitating pain is temporary, that would be a valid statement.  But I don’t live in that world.  Pain medication keeps me functioning and makes it easier for me to move around.  I have reached a point where I can exercise.  Overall, I feel good, but the truth is: I am in constant pain.  It’s decreasing the level of pain that has allowed me to function as highly as I do.  Pain medication makes my level of pain tolerable enough to function.  Functioning leads to doing things like getting dressed, leaving the house, finding an activity I like to do and doing the activity.

This did not happen overnight.  As I had mentioned in the Treatment Diaries Chat, in early days of my scleroderma diagnosis, I used alcohol for pain relief and depression treatment.  “Not ideal”, is a gentle way to describe that choice, but it was my choice nonetheless.  I was in college and drinking fit my budget and was lot more fun than standing in line at the pharmacy.

Later, I moved on to popping Percocet like Pezz.  Also not the best choice.  The “nice” thing about using Percocet was it did make me feel pain free, but like everything, it did not last and it came at a cost.  Yes, I felt no pain, but it also created another problem:  I was loosing my range of motion in my hands and wrists.  The “S” in CREST Syndrome, (Limited Scleroderma) is sclerodactyly.  My hands were contracting into a claw and my wrists fused.  I could not feel the changes and because I felt no pain I was more likely to engage in activity that would cause injuries to my knuckles and wrists, breaking open the skin on impact into various obstacles.  

Because my hands were curling into a claw, I had to learn my limitations.  Pain, although something that sucks, is a tool to let our bodies now when something is wrong.  Because I could not feel the pain of my hands contracting, I paid little attention to the changes and I did not take proper precautions to protect my hands from injury.  Of course I can’t protect anything from all injures, but there are injuries that are preventable.  Let me give you an example using a dryer handle.

Today, I have a stackable washer/dryer unit in my apartment.  I use a big silicone spoon to open the dryer door.  (See this Turtle-ism to learn how the “right” tool is entirely subjective)  I use the spoon because it hurts to use my fingers to open the dryer door.  Let me walk you through a scenario that makes opening the dryer door without a tool a problem:

Back when I was using Percocet, I would have kept using my fingers because I would not feel the initial pain after using my fingers to open the dryer door.  I would not be motivated to find a tool instead.  Not using a tool would result in injury.  I could overextend tightened skin and atrophied muscles in my hands.  Eventually, a pressure sore would appear and I  could do something unrelated to dryer opening, like bump it on the kitchen table and the my skin would break open.  From there, we’d move on to a sore that would heal slowly and be susceptible to infection.  And that’s a whole other post, but that’s an example of the path of total pain relief for long term chronic pain.

Another problem with “feeling no pain” is tolerance.   I LOVE feeling no pain.  And I don’t mean high or buzzed, I mean feeling NO pain.  But, in order to keep feeling no pain, the dose of pain medicine needs to be increased as tolerance builds.  Next thing you know, you’re taking enough pills every day to drop a three hundred pound Sumo wrestler when you realize the pills have stopped working.  So, you stop taking the pills and wish for death while riding the roller coaster of withdrawal from opiates.  If my husband (at the time) was not kind enough to put me in the car and drive around for hours while I hung out the window like a puppy, I would not have been able to follow through with stopping the Percocet.  I had the tolerance and I was one step away from complete addiction and abuse.

It was still no picnic after I kicked Percocet.  I still had to deal with the constant pain of scleroderma.  The pain medications were masking my depression.  The grief of loosing the use of my hands to scleroderma was so overwhelming, I stopped eating.  Luckily, my scleroderma and all medical conditions are covered by socialist Veteran’s Healthcare.  After dropping to 96 pounds fully clothed, in combat boots, I visited the mental health department of the Veterans Hospital for treatment of severe depression and anxiety disorder.  (For more info, read HERE)

After treatment with medication and therapy, my depression is managed.  Eventually, I became a mom, then was diagnosed with sarcoidosis.  During that time, I accepted  that if I wanted to be present for the good times, that I had to leave the house in pain.  And once I got out, I started to feel better.  There were many times that being out did create more pain ad I did go home early, but I learned to “celebrate” that I did indeed go.

This was a long journey and I find it difficult to explain every aspect in a shot blog post, so I will elaborate more in future posts.  What I hope you who are reading take from this is, the best outcome may not be the outcome we want.  It’s like the movie Groundhog Day.  Bill Murray’s character is trapped.  There is no escaping February 2.  But once he learns to make the best of his situation and exists in the realm of this situation, he then finds freedom and peace within the situation.  Living February 2nd is not his anticipated outcome, but Bill Murray’s character finding happiness accepting his life reliving Ground Hog Day,  every day, is the best possible outcome for his situation.  Life with scleroderma and starting my day with one Vicodin to take the edge off the pain while getting dressed is not MY ideal outcome, but it is the best possible outcome.  Because I take that one Vicodin, I follow through with getting dressed.  I don’t stop and put on sweatpants instead of jeans and go back to bed, overwhelmed with pain.   I’m still in pain, but it does not get worse and my stress level remain low because my pain is controlled to a point I can tolerate.  I shower, do my hair, get dressed and begin my day.  Anyone who has trouble buttoning their own pants or holding a blow dryer knows what a long and tedious process this is. But once I conquer those daily activities,  I feel motivated to continue my day and do something.  

Yes, I do depend on pain meds.  I’m not ashamed or afraid of being judged.  I use them as they are meant to be used by someone with a chronic, soul sucking illness like scleroderma:  I use them so that I can function at a level that enables me to be a good mom to my son, and be there for him.   And I plan to be here for him a long time.

Happy New Year!

Well, it’s lucky ’13.  I hope your ’13 is going well.  There have been some great changes for me.  I am in the process of relocating to an apartment.  Moving is “fun”!  I need to acknowledge my family and friends who have been helping.  They are generously tolerating my apprehension to ask for help and still helping at the last minute.  What kind of devotee to The Church of Perpetual Procrastination would I be if I had my act together on time?  No.   I am many things, and one of them is being consistently late.  (Is that two things?  Consistent and late?)

This post is to wish all of you who continue to show support for scleroderma and sarcoidosis by sharing info and reading this blog, a Happy New Year and  thank you for continuing to read and share.

If you get a chance, please visit The Mighty Turtle’s new Facebook page.  I am keeping Scleroderma, Sarcoidosis and Box Wine up, but I will continue posts on the new page because it’s easier for people to remember and spell.  I want to raise awareness and educate about scleroderma and sarcoidosis and part of that is getting people to visit links that are easy to spell and remember.  If they are easy to spell and remember, people will visit more and they will learn the spelling of scleroderma and sarcoidosis in that way.

Thanks for reading!

Sea Turtle making his way through his habitat in Monterey Bay Aquarium

And don’t forget to tell your friends about the page!  Now, it’s time to do some cleaning, packing and unpacking in my new habitat.

WEGO Health: Miss Congeniality & Hilarious Health Activist

Day 30

Chris Dean

Virgo. Pocket Duck Expert. WEGO Heath Activist.

I heard about Chris Dean’s blog, Life Your Way! in June of 2012.  Since that time, I  try to read her blog every day.  It is truly where “Health and Humor Meet in a Head-on Collision”.  I am supporting her nomination as Miss Congeniality and I nominated her for Hilarious Health Activist.  I am encouraging  you to go HERE and vote for her confirmation, or HERE to nominate her.

Okay, now I know that you are no minion and need proof.  (I love that about you by the way!)  So you can read more about me going on and on about her, or you can just skip to the end and go HERE and read her blog posts.  I encourage you to do both, but I understand there is your time to consider.  I’ll be brief but I won’t be offended if you head right off to Chris’ blog.

Chris writes openly and candidly.  She is brave in her sharing and appears not to be afraid to admit her short comings.  In fact, she will point them out to her readers and make them laugh with her.  She has no agenda.  Sure, all bloggers have a small urge inside them for total world domination; and Chris has told me herself, “It takes a special kind of crazy to be a blogger.”

When I read Chris’ work, I feel I am reading the words of someone who enjoys writing.  I feel like she does it because it’s fun and it helps her cope with the craziness that comes with being diagnosed, misdiagnosed, re-diagnosed, etc…

Chris posts every day, whether there it’s NHPBM or not.  She doesn’t write  about life at her pity party, she invites you to join the party on her blog.  Her life, like everyone else, is not perfect.  She poses great questions about her health and health topics and brings to light facts about her condition and the conditions of others.  She uses humor to teach and it is her talent.  I always feel better after reading her posts.  I have learned about things like; birding, alternative methods of yoga- and Joe My Zod, have you seen her artwork?!!  (Ah, WEGO, consider this my suggestion for an art category next year!)

Chris calls her art therapeutic for her, but to those like me who admire it, it is a gift of expression.  When I look at her art, I FEEL something.  It is a representation of her feelings and thoughts, and her art makes me get a feel about what she’s feeling.  And I look at many and think: I feel like that too.  I can’t put it into words, but I can show you some of the things I feel with her art work.

I could go on, but honestly, experience it for yourself if you haven’t already.  Read her words, see her pictures.  Everyone has their own reactions to art and words.  I know that if you take the time to check out her blog; you will laugh, you will learn, and I hope you too find something she has created that explains something you can’t describe in words.

Chris’ Blog: LIFE YOUR WAY!

Facebook: Invisibly Ill (show some love with a like)

Follow her on Twitter @Pixiecd13

And don’t forget to nominate her!

Hitting My Wall And Breaking Through

In June, I hit the wall*.  It’s not my first wall, and it won’t be my last, but I have broken through this one, brick by brick.   I hit my wall in June after a personal disappointment  and  became less active in social media.  Not as a blogger, but as member of the community.  I had given up on some goals I had originally set and  I couldn’t shake the feeling I had nothing left to offer, until this past Sunday. September 1st, I started a morning routine that I have committed to doing for 40 days.  It’s some deep breathing and mediation.  (And yes, I have had to start my 40 days over after skipping my third day; and yes I will be blogging about that once I complete it.) Back to my point: Sunday morning, I opened my eyes at the end of my routine and my answer was staring me right in the face.  It was a dry erase board filled with ideas, topics and goals on it.  I realized I was not disappointed because of what happened.  I was disappointed because of what had not happened.  This dry erase board was crying out to be read.  These were my ideas and my stranded ideas had been subconsciously begging me to release them from their two dimensional prison.  (Cut to Superman 2 and those villains hurling through space in their triangle.) So, I’m setting them in motion.   First, I added another FaceBook page, The Mighty Turtle That Could. It’s entirely devoted to activity.  Not all patients are into or able to do activities so I made it separate.  So far, I have been the only participant, but eventually, someone else will share.   In addition to my Facebook page, I added an online publication of the same name.   My original idea was a page to get patients moving, but I remembered not all patients should or can move; so, I made it about activities.  This could be just some simple deep breathing, “head bopping”(Lexie) to some music and of course exercise.  I want people to share their success, goals

If you are able, you can share this publication with friends and family through social media like Facebook, Google+, Twitter, Linkedin and more.  By sharing, you can do more than just raise awareness; you can help patients, family members, friends and caregivers who feel isolated find others who are in the same boat.
My experience with social media has shown me I am far from alone with scleroderma, sarcoidosis, depression and coping with progressive degenerative diseases.  My very first friend with scleroderma, I met on Twitter.  She lives in Denmark and I am close with  Another, in Indiana.  We are all truly in this together, and there are no geographical boundaries, thanks to social media.

So, as the bricks fall from my wall,  I have accepted I do not type as fast as I can think.  My thoughts flow through my hands as they have always done, so voice recognition software is not an option.  I suppose it could be if I tried, but it makes me feel good that I can still create with my hands.
Thank you for continuing to read this blog.  I hope you will visit other writers on my blog roll and www.sclerodermablog.com Reading the blogs of other patients and topics other than Scleroderma and Sarcoidosis not only helps to raise awareness, but reminds us we are not alone and we are not our diagnosis.
If you blog and you would like to add your post to The Mighty Turtle That Could publication or find one you would like me to include, contact me through FaceBook or Twitter
*If you are unfamiliar with term, “Hitting the wall.” It’s a term most often used by athletes, but it can be applied to personal ambitions as well.  In this scene, from Run Fat Boy Run, Simon Pegg’s character is brilliantly shown breaking though his wall near the end of a marathon. Here is the set up:  His character is not a marathon runner, but runs a marathon in attempt to win over his former fiancé he left at the alter years before.  Before he busts through his “wall”, Pegg’s character has to face his feelings.  To me, it is a very powerful scene about how no matter how many people we have supporting us, we still feel alone.  We need to face our fears and feelings we have stuffed in order to feel connected with those supporting us.   Click Here to watch.  Please comment if you have felt this way.

A Scleroderma Patient Walks Into A Doctor’s Office… And The Doctor Has Scleroderma

Edited 8/31/2012  I felt that my original post was a bit hard on the doctor.  I don’t mention him by name, but above all he is human and a fellow patient.  This experience is not just about me, but about me coping with the world around me.  Sometimes I do so in a way that seems funny to me, but can hurt others.  I  could not sleep tonight without editing  out my judgement of this doctor’s mental state.  I did not know him and although I disagreed with him strongly, I have a great deal of admiration of him because of his accomplishments.  He did what I could not do.  Have a career in medicine while living with scleroderma.  My original post criticized the doctor’s feelings about his own health.  He did not have to share his condition with me, but he did.  

“Obviously, you’re not a golfer.” ~ The Big Lebowski

In 1999, someone well intended city clerk got one number wrong my address.  Three months ago, the City of Murrieta decided it needed to be fixed.  It was a smooth transition, but not without hiccups.  A substitute mail carrier unfamiliar with my address issue, accidentally sent back my depression medication.  So on the day of my appointment this past Friday, I had been two days off my depression medication.   The VA is 41 miles from my house and I figured waiting an extra day wouldn’t hurt because I felt very stable.  That will be the last time I make that mistake.

I woke up feeling good.  I had time before my appointment to have a very productive morning.  I  found a parking spot right way at the VA Hospital and I was on time to my appointment.  I originally thought I had an appointment to see a podiatrist, but I was pleseantly surprised it was an appointment for Physical Medicine and Rehabilitation.

My Rheumatologist at UCLA recommends treatment to my Rheumatologist at the Veteran’s Hospital.  (Who by the way referred me to UCLA when he ran out of ideas in 2005.)  This is something named by the VA as managed care.  This is when a VA  doctor co-ordinates with another specialist outside the VA Health System.  It is helpful to Disabled Veterans who live far from Veteran’s Healthcare facilities and too many reasons to list.  (Click here for more info)

Because of the treatment prescribed by Dr. Furst at UCLA and the VA Healthcare System’s outstanding implementation of his recommendations to the letter, I have a stable condition.  (It took me 16 years to get here, so please don’t give up if it hasn’t been easy. )  Because of my stable condition thanks to treatment of scleroderma and sarcoidosis, my rheumatoligists at the VA Hospital agreed with me that this might be a great time to get me back into some OT to see if we can improve my finger mobility.  After fighting an OT for years about getting them to at least TRY, I had a rheumatologist who was going to order passive range of motion, if only for a short time because he agreed it was worth a try.  Needless to say, I was pretty excited.  This would be easy.  The physical medicine doctor would evaluate me and with my enthusiasm and rheumatologist’s recommendation, he or she would have no problem issuing the Occupational Therapist to at least TRY.  But alas, when the medical assistant led me into the doctor’s office, it felt like my hope had been thrown into the air like a clay pigeon and shot.

The door swung open and I could see the doctor had trouble walking.  I noticed what I thought to be symptoms of scleroderma.   It looked just like my thumb, which I had lost the top of in 1996.  His fingers had mobility, but he still typed with two fingers.  It could have been his style of typing.  I had no way of knowing.  He clearly did not recognize my visual symptoms of scleroderma.  I was afraid to ask him.  My chart said Lupus and not Scleroderma. (There’s a record glitch I need to fix, but thats for another post.)

I was a little encouraged.  I was happy to see he continued medical school despite his obvious medical hurdle.  Unfortunately, the more we spoke, the more I realized we might not be a good doctor/patient match.

It’s not that I don’t believe scleroderma patients would make good doctors.  I think they would make good doctors, but to be a good doctor, one must know the difference between empathy and projecting his or her situation on to another patient.  I perceived he was projecting his condition on to me and I was projecting my own condition right back.   Yes, he was the doctor, but he was prepared for a Lupus patient,not someone  with scleroderma.  For our purposes here, his name is Dr. S.

Dr. S began, “Oh, I see you have scleroderma.”

“Yes, since 1992.”  I replied.

“I had scleroderma.”

“Really? How long?”

“Seven years, but I don’t have it anymore.”

I didn’t even want to now why he thought he did not have scleroderma anymore.  This was my appointment and I could tell by his body language he was no longer thinking of what was best for me.  He started asking me about my surgeries as he sipped from a cup from McDonalds.  I also noted the smell of McDonald’s french fries and the McDonald’s bag next to the keyboard on his desk.  At this point, I thought about my issues with denial when I would eat things from fast food places and then wonder why I felt so swollen later. While I was taking note of what I perceived as his denial and poor eating habits, he was trying to help me with his own experiences with scleroderma.    Looking back, it seemed like a great big projection-fest.

He asked me about my diet.  I told him I maintained a high protein diet, drank protein shakes daily because it helped with my absorption problems.  Then he started to tell me how his scleroderma went away when he became a vegetarian.   I suddenly realized I picked the wrong week to be out of anti-depression medication.

The good news for this doctor was, that I have had enough meltdowns to know there are times not to have them.  He was clearly coping with a progressive, degenerating and soul sucking disease.  My care was important, but I was not in crisis and I have been doing this long enough to know how get to see another doctor to achieve my objective.  So, I sat and listened and refrained from commenting.  I will include some of my thoughts during our exchange, but I’m not going to waste your time with a string of “F” bombs.

Dr. S. began, “I had scleroderma for seven years.  I stopped eating meat and I don’t have it anymore.”

“This finger was bent like yours.” Dr. S. showed me his index finger with the tip missing and wiggled his finger and continued. “As soon as I stopped eating meat, my finger was fine.”  Then he bent his finger showing off his mobility.

“Oh and you should eat vegetables.  They will help you.”

I was about to use my “Hot Dog Down a Hallway” analogy about my digestive capabilities, but he insisted on continuing.

“Passive range of motion won’t work.  Just eat nothing without an eye and your range of motion will return, just like mine.”

I decided that trying to tell him otherwise would be a waste of my time.

“Thank you doc, I’ll try that.  Why don’t you just give me a referral to Occupational Therapy for some adaptive equipment.”  I told him.

I was happy something productive had come out of our appointment without any shouting or cursing.  I walked out of the office and headed straight to the Behavioral Health Department to handle the antidepressant issue.  It turned out, I was the cool cucumber I thought I was.

By the time I got to the Behavioral Health Department, I was doing some sort of weird hiccup noise trying to hold back my emotions.  I told the clerk I just needed to get a refill of my antidepressants.  I told her about the mail situation and as soon as I can get this started in the pharmacy, I will go into the bathroom and finish my emotional outburst.

The clerk behind the appointment desk said, “Stay right there.” and ran after a doctor who was obviously on her way home for the weekend.  They ran down a list of doctors between each other who were supposed to be on call that day.  When they ran out of names between them, the doctor who was about to leave looked at me very kindly and said, “Come with me.”

I thought I was appearing calm, but that involuntary squeaking noise that I kept making would not stop and started becoming more and more frequent.  Apparently, I was having a meltdown and suppressing it so well inside my head, the meltdown had taken on a life of its own and manifested itself outward.  Looking back, I’m a little impressed by my own body’s ability to cry out for help without my permission, but I digress.

The doctor took me into her office.  She sat down at her desk, pulled up my file and ordered an immediate renewal of my medication.  Then she stood up, looked me in the eyes and asked the 5150 questions.

“Are you suicidal?”

“No.” I replied.

“Are you homicidal?”  I paused briefly and considered a joke about the doctor I just saw, but being one wrong phrase away from a 72 hour hold,  I answered, “No.”

“I can’t let you leave like this.”  The doctor asked again,  ” Are you suicidal?”

“No, I just want to get this prescription going so I can go calm down while it’s being filled.  I promise, I’ll be fine.”

She walked me out of her office to the appointment desk to make the appointment.  I paused, then headed straight for the pharmacy and left the office.  By this time, I was just making a noise  I can only describe as a squeaking sound with every breath.  I had to get out of the Behavioral Health office and go back and make the appointment after I had calmed down, but first I needed to get the ball rolling for my meds.

I skipped the elevator and took the stairs to the first floor.  I just kept my eyes forward, moved quickly and made no eye contact with anyone.  I reached the pharmacy, took a number ticket and found a chair next to a wall behind a corner where I sat and waited for my number to be called.

The chair was broken.  The backing had been split open but because the chair was wedged into a corer, the wall worked fine and gave the chair a recliner “feel.”  I leaned my head to the right, resting it on the wall next to me.  It was not a completely private space, but I felt protected as I leaned back against the wall that was the side of a pharmacy pick up window, which was thankfully closed.  I closed my eyes and just listened as each number was called.  Then I felt a gentle touch on my hand.  I looked and it was like looking at an angel.  She had beautiful brown skin and and I could see the concern in her eyes.

“Are you okay?” The angel said.

I looked back at her and said, “Yes, I just need a moment.  It’s been one of those days.”

“Okay honey, if you need anything, I’m just right over there.”  She pointed behind me until I turned to see where she would be.  I could see her VA badge, she must have been staff, but like me, she held a ticket with a number.  She was staff and she was a veteran picking up a new prescription.

“Thank you for taking the time to ask me.  I really do appreciate it.  I’ll be okay.” and she thankfully returned to her seat.

And I really did appreciate it.  I was not looking for attention from anyone.  In fact, had I been there with someone I knew I would have made them wait in the car.  One of the reasons I prefer to be alone is because appointments can go wrong and although friends and family want to help, their feelings of frustration radiate so strongly, I can feel it.   It can make my task of staying focused on what needs to be done that much more difficult.  It doesn’t take long for me to resent their attempts to comfort me.  I feel like they are making it a bigger deal than it is.  They really are they are trying to help, but I don’t want to hear their ideas or see their worry.  That must sound awful to my friends and family, but I have been doing this so long, this stuff isn’t such a big deal to me.  But to those who love me, it doesn’t take much for them to worry.  I might feel the same way in their place.  Now back to last Friday’s adventure:

So, I eventually talked to the pharmacist to get my prescription going.  He told me it would be ready in fifteen minutes.  I walked straight to nearest bathroom, locked myself in a stall and cried for about two minutes.  I was doubled over and pretty sure people could hear me outside.  Then, as though by magic, I felt better.  The weight of the world was off my shoulders.  I stood up straight, took a deep breath and felt calm.  It was as though the anger had left my body.  By retreating to the bathroom, I gave myself permission to let out my feelings without holding back.  Those feelings left and one week later, I still feel as though I left my anger in that bathroom. I just released my anger to the universe.

As for my leaving the Behavioral Health Department, I returned to the appointment desk. I made sure the doctor who asked me the 5150 questions saw that I was okay. She smiled and nodded in approval as she passed me.  I made my appointment, picked up my prescription and headed home. It was time for The Big Lebowski, popcorn couch therapy.  Enjoy this Clip.