It’s hard…. what Dr’s never tell you

Although this is written for CVID (people who are receiving IG replacements) — this really is an article for anyone with a chronic, incurable illness.
After reading this I felt like the feelings I was having recently are not mine alone.
“It’s hard.That’s what they don’t tell you when you get diagnosed. They tell you things like “It’s manageable.” Of course, that is what they’re supposed to do. They’re doctors. But nobody ever tells you that it’s hard”….. click on the link to read more.

http://www.igliving.com/BlogEngi…/post/living-with-cvid.aspx


Posted in Uncategorized by with comments disabled.

CSS /EGPA December Awareness Post

December’s Churg Strauss Awareness Post is up and ready for sharing.

Join Dennis L. on his journey.

Is That A Horse Or A Zebra?

by Dennis L.

12299130_661529357283418_5440463816445996110_n

When I asked myself why I volunteered to write something about my history with  Churg Strauss Syndrome (CSS) (also known as eosinophilic granulomatosis with polyangiitis [EGPA] or allergic granulomatosis,)  I heard a voice that sounded like many doctors we’ve all seen and heard: “Could be the medications.”

Then I asked myself what angle should I take and I heard some of those same voices: “I don’t know, let’s run some more tests and see what develops.”

I underwent seven sinus/polyps surgeries prior to my diagnosis of CSS in 2005. The last surgery was in late 2004, from which I had trouble bouncing back…literally! Active in youth sports coaching for years, my attempt to return to basketball practice left me on the sidelines, dizzy and exhausted. I thought that maybe that nasty three letter word ”age” might have slowed my recovery, so I went about the business of living and working, acting as if everything was okay.

Two weeks later, I was hospitalized due to shortness of breath. imagesPulmonary Infiltrates showed up in both lungs, I was treated for pneumonia with antibiotics and oxygen, while giving the same “no” answer to that pleasant question: “Are you coughing up anything?” After two weeks of being unable to convince the pulmonary doctors that I did not have pneumonia, I heard from my primary care doctor about an article he had just read in The New England Journal of Medicine concerning CSS…First time he had heard the term, First time I had heard the term. He checked with the ENT who had performed the sinus surgery and found my Eosinophil Blausen_0352_Eosinophil count was excessively high. My primary care doctor had no hospital privileges so we worked together to get the disbelieving doctors to drop the antibiotics and start a high dose of Prednisone. Two days later, I walked out of the hospital without the aid of any added oxygen.

As I tried to reduce the Prednisone, other symptoms presented themselves; neuropathy in arms, legs, and feet, skin rash on legs, fatigue and blood clots. I was sent to the Medical University of South Carolina, where I was immediately started on around-the-clock IV’s of cyto500aCytoxan and steroids for four days. After dismissal, I received IV treatments of Cytoxan once per month for six months, along with being placed on oral dosages of Methotrexate and Prednisone.

 

Subsequent to that initial fun, I’ve had a number of illnesses: pulmonary embolisms, prostate cancer, phlebitis, cataracts in both eyes, and possible kidney and abdominal involvement.

I’ve also had many personal setbacks since 2005: my wife decided to leave after 34+ years together, the loss of work and the need to go on disability, personal bankruptcy, and the deaths of my parents in the past three years.

Understanding that not everybody’s symptoms, tolerances, or life situations are identical, I

'There are some things they don't teach you in medical school. I think you've got one of those things.'

believe there are two major stages in dealing with life with this disease. The first stage consists of sitting on the sidelines letting doctors, nurses, and tests run your life, becoming an accomplished actor when you know that something is not right with your body. Others don’t believe it so you use your acting skills to move into denial…maybe even believing you don’t really have CSS and everybody else must be right.

The second stage takes a more positive and proactive approach, believing and hoping that you do have some power over this unique syndrome. Actively question doctors and test results. Don’t accept snapshot results…make sure your medical team is looking at trends. Change doctors who don’t try to answer your questions. Believe that there are people out there who can help you. Get back in the game as much as possible…don’t let everything keep you on the bench!

Now to explain the title: in my recent search for another opinion, I was referred to a new nephrologist. He was a pleasant young man. We had a good discussion on autoimmune diseases and the need to treat them differently. He then related a quote from his medical professor: “If you hear hooves, it may not be a horse, it may be a zebra.” With autoimmune diseases, you need to be sure your medical team is looking for both the horse and the zebra!images-1

kevinselig
Kevin Selig  was diagnosed in January 2014 with Churg Strauss Syndrome and fought a courageous battle against the disease. Kevin passed away on Saturday, June 21, 2014, at the Mayo Clinic Hospital in Jacksonville, Florida.
We in the CSS community were saddened by the loss of such a vibrant human being and reminded how our illness often goes undetected until too late.  Glenys , a very brave CSS warrior, set us into motion to bring awareness to our disease with a challenge to raise awareness of Churg Strauss Syndrome by posting a story on the the 1st of every month in an effort to let the world know we exist and we want to help others obtain earlier diagnoses. 

Link to other CSS awareness posts in memory of Kevin Selig

General CSS/EGPA and Vasculitis Information


Posted in Uncategorized by with comments disabled.

What’s worse than being ill 24/7?

Every Month I have the honor of hosting a post by someone in the the Churg Strauss Syndrome Community telling the world about what’s it like to live life with CSS.

CSS is what is called an invisible illness, we carry most of damage within our bodies and tend to look ‘normal’ on the outside.  The damage is deep and I am humbled by my fellow CSSers on how they keep going on day after day.  How hope burns so bright and even though our disease is considered to be an rare illness, we are all hopeful of new medical treatments in the future.

Here I present Emma’s story.

What’s worse than being ill 24/7?

Being ill 24/7 yet nobody believing you!


Posted in Uncategorized by with comments disabled.

September 2015 – CSS awareness by Shawna

On the 1st of every month, I host a post by a member of the CSS community so that we can get the word out about CSS and help people get earlier diagnosis.

This Month’s post is by Shawna and she lets us into to her world and how she has had to alter her life in order to live with CSS.  Her wonderfully honest post is not about the medical tests and the process of diagnosis but rather how she has had to change herself in order to live with CSS and how this has impacted her both mentally and physically.

Shawna shows us how when life does not go as planned we just need to stop and look around us to find joy and love.

Please read, enjoy and share.

September 2015 — by Shawna

11753697_891231020971917_9025496094853160822_n


Posted in Uncategorized by with comments disabled.

Asthma Treatment Medication

11696307_10207073310935985_2105916589720375038_oThis is an informational post about Asthma medications and treatments.  Always consult a doctor before beginning, changing, or discontinuing any asthma treatment.  Asthma is a serious condition that without proper management  can lead to death.   I am NOT a medical professional, these are just useful sites I have found.   The cover photo is from a drug company and  does not list all options, please read on and click on the links to see what other medications are available.

f5ffa86e48ce0282e757107da6dd37ac

Some of us have had Asthma for many years and forget why we take a particular type of medication for Asthma.   Here is some great background and reinforcement reading and charts that I found today.  For me it is always a great reminder of why I take some medications for my Asthma associated with my CSS, how these medications affect me affect me, and what other options there may be out there.

 

Here are some good graphics explaining asthma inhalers and a very text chart from the American Lung Association of different types of asthma medications (it’s from 2009 so does not have the latest and greatest) but it’s  a nice read or reminder.

header-logohttp://www.lung.org/associations/charters/mid-atlantic/assets/bwlw/medicine_chart_rev_09.pdf

 

Extremely nice PDF chart with pictures of each medication and dosages available from the state health dept of Minnesota. (use your ‘zoom in’ button on your PDF reader to make it more readable)

images
http://www.health.state.mn.us/asthma/documents/MedsLetterSized.pdf

 

images-1From National Asthma Council Australia  here is another chart.
http://www.nationalasthma.org.au/uploads/content/195-Asthma-Medication-Chart-2015.pdf

Look around their site it’s full of great information http://www.nationalasthma.org.au/understanding-asthma

Lastly a 32 page PDsup-doc-homeF guide written for doctors called the Pocket Guide for Asthma Management and Prevention.  The intended audience is doctors and nurses and it was updated in 2015 which makes it very relevant.  It states it is based on the global strategy for asthma management and prevention.  I learned a lot from this guide — I like to know how my physician thinks and what it is based upon.  http://www.ginasthma.org/local/uploads/files/GINA_Pocket_2015.pdf     The main site for the Global initiative for Asthma is http://www.ginasthma.org/

I didn’t start my morning by  intending to write this post, but I awoke with an asthma attack and was wondering about my medications so it lead to this post.  I hope everyone find something new or educational and please feel free to share and comment with your useful asthma links for other readers.

9634da3240c03c429eab8dd789b70150

to return to the Karen in Wonderland Blog Posts

to return to more information about CSS / Vasculitis

to return to other monthly CSS awareness posts

 

 

 


Posted in CSS, Uncategorized by with comments disabled.

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….


Posted in Uncategorized by with comments disabled.

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.

11701058_796463890466242_3233327153366074498_n

 

 

 


Posted in Uncategorized by with 20 comments.

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…).


Posted in Uncategorized by with comments disabled.

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

Untitled


Posted in Uncategorized by with comments disabled.

Day 3 — (part 1) Jacksonville 2015 VF Symposium

Due to the intensity of this day and my lack of wi-fi for the next week I will be publishing Day 3 and my end thoughts in sections.  Please be patient, it will be worth the wait.

The A-team of Vasculitis information and knowledge was present on the third and final day of the Vasculitis Foundation’s (VF) 2015 Symposium in Jacksonville Florida.   I was very tired by day 3 and it was hard to stay focused on so much great information that was being shared.

VF-Awareness-2012-nodatelogo-300x102The morning started with The Vasculitis Foundation’s annual meeting. There was a surprise announcement that 2 NEW studies have been funded by the VF in the area of CSS. These studies were funded though a donation from Ben and Cathy Johnson. WOW…. This is incredible news for CSS patients around the globe.  I do not want to give out mis-information so when I get the specifics of each of the studies I will post them (soon… very soon).

We were also given the financial statement of the VF and news about programs, grants and fellowships that they are working on. I could appreciate when the speaker said we are not ‘rare’ we are ‘extraordinary’.   If people think something is rare, they think it will not happen to them or someone they love. The word extraordinary gives one a much different feeling.

The digital age is being welcomed by the VF. There are over 4,000 members in the Facebook group and over 30,000 view of the u-tube Vasculitis awareness videos. Ed Becker has worked very hard on all these videos and was there filming many, many more for future release. I even did one….. and the camera lens did not shatter (surprising).

Something VERY important to note here.  Just because you belong to the VF Facebook page does not mean you belong to the VF as a member.  As a member, your $35 a year is helping to fund research in the field of Vasculitis.  You are also part of raising awareness.   If you are interested in joining the VF, the membership application can be found here.

graysonp

Peter A Grayson MD

The first talk of the morning was titles Research As A Form Of Patient Care by Peter A. Grayson, MD.  His talk was fasinating and I had trouble taking notes due to the profound interest I had in his slides and his research.   I will start with the the most important part.  They are actively looking for people with Large Vessel Vasculitis to come to the National Institute of Health in ______ for imaging test studies.  So IF you have large vessel vasculitis contact the NIH and please participant in their study.  It could help you and patients in the future.  He went into the fact that there are so many ‘opportunities’ in research in Vasculitis.  He sees the greatest opportunities in:

– unclassified vasculitis

-treatment of refractory disease

– unusual features and presentations of vasculitis

nri3024-i2He sees every case that does not fit into the ‘normal’ vasculitis box as an opportunity to learn more.  He enthusiasm was contagious.  He presented a case study of a family that ended up not being vasculitis in the end, but he was thrilled at being able to classify things as vasculitis or just being able to find out what it may be if it wasn’t vasculitis.   He spoke about “NETs”.   Neutrophil extracellular traps (NETs) are networks of extracellular fibers, primarily composed of DNA from neutrophils, which bind pathogens.   If you have never heard or read about NETs now might be a good time to blow your brain and read about them.  They are fascinating and the imaging is amazing.  Here’s even a cool u-tube video about them.

images-1 images

 

Talk #2 of the morning was by the amazing (in my humble opinion) Ronald Falk, MD.   His talk was entitled, ‘Understanding Vasculitis: A View From 30,000 Feet : Where We Are, Where We’re Headed’

images I initially did not understand the title but as he explained the meaning behind the title it made sense.  Dr Falk compared having vasculitis to the views of the Grand Canyon.  You may be, at times on the ground…  unable to see around the next rock formation and no end in sight and you look up and can’t figure out how you will ever get out of it.  Or you could be sitting on the edge of the canyon, looking down. seeing small sections and seeing the way to go forward but not seeing the whole thing.  The 30,000 feet view is way about, you see it all laid out before you but you are so far away that you can’t see the tiny details like the person on the ground.

As a patient we are usually at the bottom of the canyon unable to see the clear pathway and only seeing more obstacles in our way to better health.  The doctors tend to be at the rim, looking down.  They see the pathway, but not the whole picture, they can;t see the ‘little things’ we are encountering.  The researchers are at 30,000 feet — they may see the whole picture but sometimes lack the details.

Dr Falk gave a fascinating talk about the discovery of Humoral Immunity by Ehrlich 440px-Paul_Ehrlich_1915who was a pioneer in this field in the 1800’s.  He showed a great see-saw image of how we need our antibodies to be in balance with the regulatory cells.  What we want is balance and what we lack as Vasculitis patients is such Balance.  When we have balance, we can be considered to be in remission.  He sis a fantastic job of describing what’s going on and what the ‘break down’ is in our bodies.   Antigens… Antibodies….   lots of great slides and info but way too much to take notes on (once again should be released soon by the VF for all to see).

Dr Falk went on to explain that “we all have 50 different type of immune cells and we are just beginning to understand some of them”.  He also emphasized that ” If you get 900px-C5a-receptorstressed, you get worse”.  How wonderful to really hear it from a doctor that stress is such an important player in our Vasculitis flares.  He also talked about the C5A receptor blocker being studied as it worked on mice for ANCA associated Vasculitis but human trials have not begun.

He stated, “We need to learn how to use the drugs we have better or create a device to assist patients”.    Emphasis was placed on the fact that the drugs we have are so good that we are over suppressing patients and infections are a real possibility.   They are studying what is the lowest effect dosage of medications and how to test that so patients have the lowest possible chances of infections.

The most common question from patients seems to be, ” When should I stop immnosuppressent therapy?”  In order to answer this questions doctors have to figure out what will prevent your disease from coming back or becoming active again.  1/4 of the vasculitis community reach long term remission.  He would love to find a biomarker so the doctors could predict when you are in remission and when you are going to flare.

Now the 24,000 dollar question.images-1

IS THERE A CURE?

Well, sad to say no cure at this time but the research is heading toward the idea of restoration of health and well being for the patients and that is why patient powered research is so important (see day 2 post to find out more about becoming part in patient powered research).   Dr Falk stated that 81% of people with Vasculitis admit to using some sort of complementary health practice to help them feel better and restore their health.  He states, ” Whatever you do that makes you feel like it restores your health…. Do It!”  Just don’t go to extremes and share with your doctors what you are doing.

10956057_10153034950254114_900640331162474468_nThe most exciting part I thought was when he stated…. Yes, boys and girls and respected medical doctor and researcher stated that, WE as patients, tend to know when we are going to relapse (flare) before the tests know.  We should trust our instincts and our experience.  I don’t know about you, but to have a doctor admit that we know before the tests show is AMAZING to me.  I have always known, I have little feelings, and little things start to happen but usually I wait too late for the tests to show and I end up in a huge flare.  Now I know to be more proactive and stand my ground when I know a flare in on the horizon even if my lab tests show otherwise.

His last thought was ” Merging of science and patient voice will get us where we want to go…”

That is where I am going to leave you my friends and followers.  Think about that last statement.  Decide how you can assist and help out so patient and doctors can merge as one in our treatment.

My next installment will be out in a few days and I will go over the last 2 speakers of the day and my closing thoughts.  Be well, and remember knowledge is power and maybe it’s time to take the lead in your Vasculitis health to more forward.

See Day 2 VF Conference, Put One Foot in Front of the Other….

See Day 1 – VF Conference 2015

See Jacksonville or Bust – pre-conference thoughts

See Other Karen in Wonderland Blog Posts

Return to Karen in Wonderland main page

See more info about CSS /EPGA

 

 

 


Posted in Uncategorized by with 1 comment.