CSS awareness post August 2015 by Sheila Eddy

A NEW Churg Strauss Awareness Post for August is up and ready to be shared.  Read about Sheila’s Journey and how ‘The Cough’ lead her to her CSS diagnosis.

IMG_2392Follow this link to Sheila’s journey….


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The Ugly Side of Competitive Chronic Illness

4850038-3x2-700x467Is having a Chronic Illness really a competition?  

Logically you would think not, but in some patients eyes it is…

I can’t believe I even have to mention this happened in a Symposium for people with Vasculitis. I was greatly hurt when I overheard these comments and at one point I was close to verbally slapping someone as I felt the need to protect a young adult patient that I greatly admire.

First, let me say Vasculitis is a roller coaster. Sometimes we find ourselves heading up the

Silhouette of roller coaster; sunset

Vasculitis is a roller coaster

highest hill. We may look great, we may feel pretty darn good but we know our illness is a chronic one and we never know when the down cycle is coming. Other times we are in the down cycle. We feel like hell, amazingly enough, many of our aches, pains and organ damage cannot be seen on the outside. We may cover the bruises, the rashes the sores that are not healing properly. You can NOT look at me and tell me what my Oxygen level is, You have no idea that I may have just stepped out and done my pocket nebulizer in private. You do not know the hell I may have been through or the hell that may be ahead of me.

I have enough difficulty with people I do not know judging me, so the last thing I expect to encounter or over hear at a gathering for patients, their families and doctors is someone judging other illness or feeling the need to belittle their experience and express verbally how ‘lucky’ that patient is that they are not as sick as the judging person perceives them to be.

I am angry! I am sad.   I can’t stay quiet about this. Vasculitis is not a competition. There are no winners for being the perceived ‘sickest’. We are all victims and are trying the get the best quality of life that we can. How can you look at someone in year 5 of this chronic illness and just because they ‘look good’ judge them as never being that sick. Maybe their tracheotomy scar is hidden by that pretty scarf they wear, or they have worked their butts off learning to walk again after that stroke that had years ago.

I for one look darn good on the outside. I work at making sure I look good when I go out. Don’t tell me I should be happy that I can eat when you see my few pieces of fruit on my plate at breakfast. You have no idea that I spent 30 minutes throwing up in my hotel room 19808_582940935142261_8881695349126739132_nand then took a Zofran, washed my face and headed down to the conference with a smile on my face hiding whatever pain I may be in.   You were not in my room at 1am when my asthma got so bad that I had to do back to back nebulizer treatments and then the albuterol in my system made it so I could not sleep. Yet I drugged my tired, aching body out of my room to be at the 9am session. Yes, I smiled and I laughed. For me that is the best medicine. I could curl up in bed and feel sorry for myself or I could complain about everything or be angry at how this illness has altered in my life. You have not walked in my shoes, you have no idea what my shoes look like.

I was shocked to hear a few attendees take time to belittle others about their illness. Signifying that ‘they’ were sicker. This is NOT a one up game people. How dare you say some young adult was ‘lucky’ when you have no idea of the hell she has been through and how she just keep going and has not and will never give up. Did you look?  Did you see the scars she carries? Did you even spend a moment and talk to her and really listen to what she may have been through before you belittled her illness and called her, “lucky”. She may choose to move on and move forward rather than wallow in self pity or dwell upon her past medical history.  She is living in the moment.11168468_841650835900962_5996818757295356416_n

Sure, I get jealous of those patients that may be off prednisone or are in remission. That jealousy can turn to anger that WHY have I not be given the gift of prednisone free days or why remission may always be a unreachable goal for me. Sure I have those feeling but to overhear on another occasion someone openly ask another participant are they sure they even have Vasculitis because that patient is currently off prednisone.

It is nice to hear from other patients what medications they are on because you might hear about something new or you might feel good that is they lowered a certain medication, you may also be able to do that in the future. To use a ‘what meds are you currently taking’ question and then turn it into an attack on a person… so wrong and so sad. The accuser never even knew this patient has had heart surgery related to her Vasculitis. The sad part is this patient was attending their first VF symposium and finally felt like they belonged and had people around them that understood what personal hell they may be going through.   I feel sorry for the accuser for being so angry at the world that they never took time to listen.. really listen. If they did maybe they have learned a thing or two.

We should not have to justify our chronic illness. We should not have to make ourselves look bad just so others would not question our condition. We are allowed to look good, laugh and have fun.   Please, if you are one of these ‘judges’ or ‘one up addicts’… STOP IT!

We are allowed good spells. We can go out and climb a mountain, run a race, or ride our bikes. We should not have to hide the fact that we enjoy life and are trying to make the 11329875_770964676349497_5327448943496000336_nbest life possible for ourselves. We should not have to hide it. We never know when our health is going to change, so please stop the judging if we are having a good spell and enjoying all that life has to offer.

We are a Vasculitis community and should act as one. We should help each other through the tough parts and hold each others’ hands when things get miserable. We should share information and not be ashamed to hide our successes. We NEED people that are in remission or on low dosages of medications to stay in the social media groups and not be scared away because they ‘no longer seem ill’. It is important to see their accomplishments and hear their stories. They can give positivity to the social media groups, which is greatly needed at times. All scary, all the time is never good unless you are in a Stephen King novel.   Vasculitis becomes less scary when we hear about how people may be off or on minimal medications, or are out in the world accomplishing things. Maybe if we listen we can get ideas of how to alter our lives to get the most out of it.

We are given one life. To have Vasculitis sucks but we need to learn to be kind to ourselves and others with this crazy roller coaster of a chronic illness so we can learn to move forward.

Thank you for listening and I apologize if you were one of those victims of people needing to be sicker or belittle you. The Vasculitis community is a great group and please stay active and you will find you place with like-minded individuals. The beauty of social media is that there are now many groups for Vasculitis patients. Some are for specific disease types, some for general questions, some for social and fun which allows member to swear away from all Vasculitis all the time, some are for Alternative therapies or healthy cooking and some are for religious and prayer circles.   You can choose to belong, read or participant in any group you feel draw toward. If you don’t find one, think about starting your own group or blog.   I started this blog because I felt the need to share my positive focus even in the face of this life altering illness. You may agree with me, you may not – you can choose to read or follow my posts. I may not agree with you on some topics but that is OK. Diversity is what makes life special.

Just a few words of caution about social media:

#1 – Don’t spend all your time online, go out and live life not just observe it or read about it on the internet. If you are ignoring your own family due to a drama on the internet maybe you should re-evaluate how you are spending your time.

#2 – People on the internet can falsify who they are or the extent of their illness.   Be careful.   If your ‘spidey sense’ says something may not be right, you have the power to unfollow or block that person. Sometimes the best thing is just ignore them, without attention the internet ‘fakers’ tend to go away or find another group. (I know this may contradict the meaning of this post… but meeting someone in person and on the internet is two very different things) Trust me.. been there.. lived through that hell and have finally moved forward.

#3 – NEVER, EVER send people money over the internet that you do not know or can not verify! Direct people to local groups that can assist them or help them with medical assistance.

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Information from the Vasculitis Patient-Powered Research Network

During the 2015 International Vasculitis Symposium we had the opportunity to connect with patients and their families. One of the questions we received about joining the Vasculitis Patient-Powered Research Network most often was about data security.

We provide detailed information about the security of your data and how it will be used on our website at: http://www.vpprn.org/Privacy#data

Interested in joining this Research Network and being an active part of research into Vasculitis?  How can you help?  Funny you should ask.  Join the V-PPRN (Vasculitis Patient Powered Research Network).  I find it kinda fun if you do it through their portal called V-Bold.  Then it seems more fun and you can earn ‘points’ to get some of that cool SWAG you saw from the convention and you can even get enough points by just answering surveys about how you feel or about a recent flare that you get to have a one on one conversation with a researcher (kinda cool…).


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Kathryn tells her CSS/EGPA story

The July Awareness post is finally up and I hope you enjoy the CSS life story written by Kathryn.  She shows how CSS totally changed her life and the frustration of years of not knowing what is going on on with your own body.

Kathryn shares how her belief if God has helped her through and after her initial support system (her husband) abandoned her, she found a much stronger support system through her sister.

Please read and enjoy

Kathryn’s Story

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