New CSS awareness post for April is up

for your reading pleasure… read about Donald and his CSS journey.


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Make Adventures Whenever You Can…

spoonsfunIf you have a chronic illness you are more than aware that your life tends to be filled with Doctor’s appointments.  You go to the doctor when you are not feeling well, to find out if if your illness is flaring.  You go to the doctor while you are flaring to see if you are improving.  You also go to the doctors even when you are feeling great.  These are sometimes the most annoying and most necessary of all the doctor appointments.  These are the ones you go to to find out that you are doing OK, that your regime of medications are keeping you stable and if you are lucky you may find out that you are improving.    Sometimes these ‘just checking in’ appointments may reveal a dark thing lurking within your body so I always have mixed feelings when I go to a doctor on a routine appointment.  Sometimes I walk out smiling, knowing I am doing OK, and knowing I get to go out conquer the world.  Other times I leave dazed and confused, not sure of where to turn because a problem was found or more testing is needed.  Eight years into this and I still have apprehension every time I enter a doctors office.

I attend most of my doctors appointments alone.  I do this for multiple reasons but the main reason is I never seem to know what will happen at these appointments.  Will I enter that office feeling great and exit feeling dazed and confused.  I usually have a lotIMG_2506 of emotions to cycle after an appointment and I prefer to do my cycling alone, I don’t want to share my feeling nor do I want to discuss how or why I am feeling any particular way.

Just because I go to my appointments alone and because they tend to take up a good part of my life (think of 6 different doctors who you see on a 3 or 6 month rotation and that is not including all the blood test or other tests, scans and probes) doesn’t mean I don’t want to have fun while doing it.   I always try to plan some fun around every appointment.  I understand not every appointment can be an adventure but if I can make it one, I will try!

I used to feel guilty about these mini adventures I was having.  I felt like I could not post to my usual CSS support groups about them because I felt like I didn’t want to make others feel bad, lonely or sorrowful.   Thanks to a fellow CSSer who I shall refer to as ‘my evil twin’ I realized that I am not the only one who tries to make the mundane, confusing and sometimes painful world of doctor appointments fun.  I also realized that I am doing a disservice by not sharing my adventures.  Maybe I can inspire another person to make a little adventure of your appointments so that no matter what emotions you are struggling with as you leave that doctors office you still remember to live life to the fullest.

A Foggy Day In San Francisco

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a bright colored home for a foggy day. Love the sure of the staircase sides that make the curve of the front windows.

Yesterday I had two doctors appointments in San Francisco.   They were spaced 4 hours apart so I knew I would have some time for adventuring.  I had nothing planned as I left the house except to have some good food between visits in the city.  I left my house at 7am for my 2 hour 15 minute commute to San Francisco.  I did not plan ahead so only had my cell phone to take pictures of my adventure.  As I sat in traffic on my way to my 1st appointment instead of getting annoyed I just looked around me and marveled at the amazing array of architecture and color in the homes.

 

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Smoked Tea Salmon with garlic chile beans and tabbouleh salad.

After my first appointment I was starving.  I planned to go to this Latin place I had visited before but since they were not open yet I decided to try a new restaurant.  I was attracted to a place called BEAUTIFULL in Laurel Village because of the look of all the amazing food and choices.  Wow!  I was amazed at the freshness and quality and not till I got home did I google the restaurant and found out I picked a winner.

 

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Map of Golden Gate Park. There is lots of adventuring left to do here.

 

Next I treated myself to a little shopping and picked up a new pair of jeans and a sweater.  Even though I have gained weight from the 8 years of prednisone I really think it is important to still have some nice clothes so I can feel good good about myself.  Next, I remembered that on my way to the appointment I saw a sign for the entrance to the California Academy of Sciences located at Golden Gate park.   I have never been there and knew it was a nice place to walk around and maybe see some fun things.

Although, I was amongst many class trips my visit to the Academy was wonderful.  I knew I was limited in my energy so I planned on staying there for 90 minutes and just wandering and learning the place so I could return in the future.  WOW!  It was an amazing place.  I spent some time in the rainforest dome among the butterflies and then went to the Steinhart Aquarium (part of the Academy) and just got lost looking at all the tanks filled with creatures .  I then just wandered around to plan out my future visits and of course visited the gift shop.

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Murphy Windmill in Golden Gate Park, San Francisco California

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Grey day at an almost deserted beach in San Francisco

Afterwards I still had an time before my next 2pm appointment which was good since I got lost (story of my life in San Francisco) and ended up at the beach.  California has some of the best beaches but not this one in San Francisco.  It was kinda scary and definitely did not show SF’s best side, but never shying from an  adventure I exited my car to snap a few pictures before hastily getting back in my car.  There was a large amount of campers and cars with people living in them parked in this area and the ground seemed to have a growth of alcohol bottles that definitely was not Napa’s finest wines.   I was surprised by the fact that there were two windmills near the beach.  I later found out they are called the Dutch and Murphy Windmills and have a very interesting story behind them.

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They certainly don’t try to give it to you lightly here….

 

I am glad I was not planning on touching the Pacific Ocean from this parking lot though, let alone taking a swim….

 

I made it to my second appointment on time and 2 hours later (yes long appointment and unexpected lung function tests) I was on my way back home.   It was a good day, yes, as always the doctors brought up some questions, switched a medication or two and rescheduled to see me back in 3 months.  I had time to think about everything on my long commute back home but since I didn’t want to cook for the family once I got home and needed a driving break, I was happy to find an Off The Grid Food truck gathering to grab some takeout and drive the rest of the way home.

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OK, I admit it. I LOVE food trucks and a group of them gathered in one place. HEAVEN!!!!!

 

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or you can just go to my story about A Weight Watcher’s Moment.


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Weight Watcher’s Moment

imagesPrednisone is the medication we love to hate.  With many autoimmune illness it is the medication that keeps down the inflammation and keeps us alive.  Sounds like an ideal medication right?  Well, with Prednisone comes weight gain….   many prednisone depend people have rapid and drastic weight gain.   We try and try again not to gain weight with every prednisone increase but like ravenous wolfs we can not help by helping to clear the table by eating everything that is left on everyone’s plates as we ‘clear’ the table.

I have gained weight… a lot of weight while on prednisone for the last 8 years.  A few years ago I lost 42 pounds but after a relapse of my Churg Strauss Syndrome (CSS), I ended up gaining it all back.   I now go to Weight Watcher’s (WW) meetings in hopes of not only fatcatpredhumor-e1406842276697losing some of the gained weight but also to learn to eat more balanced meals so when I am on high doses of prednisone I may not gain as much weight anymore.  I am retraining my mind to think about food differently (very hard for a culinary addict like myself).   I have lost 20 lbs over the past 8 months but the important part to me is that I am keeping that weight off, even in my bad prednisone times.  I hopefully will continue to slowly but surely lose more…  but I have learned to be patient and not be hard on myself since I need to be happy to be alive rather than upset when I see my body in the mirror.

All this brings me to today’s moment of guilt when I was in line at a local Mexican Place and I realized my Weight Watcher’s leader and coach was waiting for her food too.   I quickly had to think about what I was eating and what she might say to me….  Suddenly extreme  guilt came over me and I was feeling the need to justify what I was eating and WHY I skipped the WW meeting yesterday.   I ordered a salad type burrito (which I usually don’t eat the flour tortilla wrapper) ElPresidente_Burrito_main_258_152_c1and a diet soda but I still felt guilty.  Then just about as I was to blurt out, “I’m sorry I skipped WW and I have no idea of how many WW points I am eating and I don’t care today…”, I saw her order arrive and I heard her ask for extra sour cream.  Suddenly I realized how silly I was being and remembered that weight is gained one day at a time and should be lost one day at a time.  What really mattered was that I was eating nutritiously and enjoying my lunch.

Everything changes when you have a chronic illness and weight gain is just one of those changes.  Yes, at times I hate what I see in the mirror mirrorbut I know I am trying.  I am wearing my FitBit and have a step goal I attempt to meet on my ‘good’ days and I am realistic that I have at least 1-2 ‘bad’ days a week. (that number fluctuates as does my CSS).   I add fruits and veggies to every meal and I am addicted to roasting veggies and eating them as a snack so I know that helps.  I plan on being on this earth for a LONG time, so I will be kind to myself and give myself time to lose my prednisone weight while being realistic that I may never be as small as I once was.

I think we sometimes forget to loose sight of the fact that it doesn’t matter how much we weigh, what matters is that we are kickin Vasculitis’ butt and here on the earth to fight another day.   Be kind to yourselves.

 

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For more of my blog posts go to Karen in Wonderland’s main page

 

 


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March CSS Awareness Post

glenys1It’s almost the first of the month so time to make people aware of a rare form of Vasculitis. This month’s personal experience story is written by Glenys Logan. It shows how CSS can appear without warning and the angst we go through trying to find the proper diagnosis. http://kareninwonderland.com/?page_id=476


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The Spoon Theory by Christine Miserandino

Years ago I read this and shared it with some people so they could understand what I was going through and why I seemed like a ‘flake’ at times.. cancelling plans, not being able to do multiple things in one day.
Christine Miserandino’s Spoon Theory still rings so true today for me. I am thrilled I have more spoons per day now, than what I used to but I still have a limited number. I have to make choices each and every day about how to spend my daily ration of spoons.
Please read and enjoy. If you have a chronic illness which zaps your energy on a daily basis, share it with friends and family so they can better understand you. The best thing I ever heard was my sister once saying to me, “So, you used up all your spoons today didn’t you?” It meant so much that she understood me and my daily battle with fatigue.bydlslogo-230w
http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/


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