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.

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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

site de rencontre gens d'affaires 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

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See more info about CSS /EPGA

 

 

 


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Day 2 – Vasculitis Foundation Conference 2015 in Jacksonville Florida

300Put one foot in front of the other
And soon you'll be walking 'cross the floor
Put one foot in front of the other
And soon you'll be walking out the door

Anyone remember that famous animated Christmas classic – Santa Claus is Coming to Town?  How about the Song? Put One Foot in Front of the Other. Sung by the voice talents of Mickey Rooney and Keenan Wynn?

After Day 2 at the Vasculitis Foundation’s Conference I am reminded of the lyrics of that song.  It strangely keeps running through my head:

You never will get where you're going
If you never get up on your feet
Come on, there's a good tail wind blowing
A fast walking man is hard to beat

Today theme for me was research.  When it’s been and where’s it’s going.  Dr Peter Merkel from University of Pennsylvania Health Services gave a wonderful overview of the Research Advances that are being funded by the VF talk.  He really emphasized the importance of keeping researchers interested in researching vasculitis.

I really think the ‘there is a good tail wind blowing’ and we need to start walking toward 1468543_832137833500804_2813103773110131101_nmore and better patient centered research.  Dr Merkel quote of “There has never been more research going on in vasculitis in the the world than right now” was a statement I think every Vasculitis patient needs to hear.  I could hear my inner song of the day…   We are putting ‘one foot in front of the other…’  The research is going on at all levels and because of new affordable care act funding there is money being made available for Patient Centered Outcome Research and the VPPRN is taking full advantage of that.

Dr Merkel went on to explain the whole list of acronyms that would make you head swim and how each is working together.  I am sure these will all be available in slide form soon so I am not going to attempt to even sort them out for you but the bottom line is Hospitals are being linked together to better share data about Vasculitis and Patient Network centers are being formed and getting up to running speed to gather the intangible patient information about how vasculitis really affects the patient and how we really feel (not just lab numbers and test results).   So in essence, the groups needed to further research in Vasculitis are getting together, forming partnerships and moving forward at a pace never seen before.  YEAH!

But…  always a but right?  This CAN NOT happen without the patients being involved.  We need to as a group speak up and get involved.  There are many things we may not share with our doctors or our doctors may not ‘hear’ when we tell them.  This is our chance to be heard and start, ‘ walking out that door’ to better health in the future.

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…).

Please do not think because you are feeling better OR you are in remission that your 10942515_10152963945716117_1161029882694283833_ninformation is not needed.  You are needed more than ever!  How did you get to remission?  How are you staying there?   You can share as much or as little as you choose and can change your settings in the future. (baby steps people…).

If we don’t participant than we are saying, as a group, that we don’t care about Patient centered research… got you thinking now?  I do not work/volunteer for the V-PPRN and was highly skeptical when they first came out about the security of my medical records and how much to share.  I like the idea that I have options and the latest secure data resources are being used to protect your medical record.  I get to choose how much to share and when?  And I can earn points toward some nifty VF stuff…   kinda nice incentive.  You can even earn points to pay for your annual VF membership fee (even better).

So….

If you want to change your direction
If your time of life is at hand
Well don't be the rule, be the exception
A good way to start is to stand

Time to stand -up people for research.  We can be quiet and sit back in our bubbles but the squeaky wheel gets the grease and I plan on being that squeaky wheel.  If we all band together image how squeaky we can be.  SO it’s time to ‘start to stand’ and ‘put that one foot in front of the other’.

If I want to change the reflection
I see in the mirror each morn
(Oh you do!)
You mean that it's just my election
(Just that!)
To vote for a chance to be reborn

Just saying…

That my readers is my take-away for Day 2 of the Vasculitis Conference.

After the morning session,  I listened to some insightful talks by researchers and doctors that were funded through some of these programs.  They gave us insights to their advancements and findings in the world of Vasculitis (all which will be on u-tube videos and slides I am sure in the not too distant future).

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A little overcast… fine, make that thunder and lightening… water taxi anyone?

 

I had a delightful river cruise (aka river taxi ride) with a few fellow vasculitis patients and we spent most of our time laughing, talking and sharing and to tell you the truth 95% of our conversation had nothing to do with our illnesses.  We are people with Vasculitis and we are still exciting and fun people and sometimes we need to put Vasculitis on the back burner and just smile, laugh and have fun.  So, if you think these conference are Vasculitis all the time, you are far from the truth.  The VF conferences are what you make of them.  Attend with a positive attitude, an open mind, and a smile on your face and you will be rewarded both mentally and emotionally, but more on that tomorrow…  for today just remember…

Put one foot in front of the other
And soon you'll be walking 'cross the floor
Put one foot in front of the other
And soon you'll be walking out the door

See Day 1 – VF Conference 2015

See Jacksonville or Bust – pre-conference thoughts

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Jacksonville Vasculitis Symposium — through my eyes — day 1

Hey Dorthy, We’re not in drought ridden California anymore! Ok, probably just me but I am loving taking a break right now and just listening to the thunderstorm and seeing the lightening.   It’s a nice chance and a peaceful way to spend the next hour till dinner with other members with CSS group tonight.

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Vasculitis buttons for all types — great for finding ‘your tribe’ Not good for playing poker 🙂

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VF brochures on every type of Vasculitis

Today was exhausting and enlightening. First let me say that getting involved has really made these conferences more entertaining. It has given me a way to connect with more people and hear more stories.

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Sunrise and New Hope for Vasculitis patients in Jacksonville, Florida

The Opening speaker of the conference did a presentation on being a proactive patient. It was very informative and basically was reminding us that WE are the heads of our teams and as such it is important to keep good records, educate ourselves and take control of our Vasculitis.

One of the opening statements by a Vasculitis Foundation Board member said it best, “ you are to be congratulated because you took control of your Vasculitis by coming to this symposium”.   I guess jumping out of my seat and cheering at that moment would have been appropriate but if I could have high-five that man I would have.

 

The biggest question is geological dating isotopes WHY should I show up to one of these conferences when most of the slides and presentations show up on the internet and u-tube within 6 months?

Good question and here is my take-away.

#1 – Many of the slides and information shared by the speakers is cutting edge’ and has 2417904339_26ce05c4bdnot even been submitted into medical journals yet. For this reason no video, recordings, or pictures of their slides may be taken. So, coming is the one of the only ways to be ahead of the research curve.

#2 – You get more by the inflection of the speaker, their body language, their unique sense of humor then you ever would by just reading the notes and see a slide of the presentation. Everyone may be listening for something different so coming is the only way to really make sure you hear (or you ask the speakers your questions) what is important to you.

IMG_3647

T-shirt table

#3 NETWORK, NETWORK, NETWORK – Wait should I say that again? I had the pleasure of working the T-shirt station and upon handing someone their t-shirt and they saw my button stating I had CSS/EPGA they burst out crying and nearly jumped the table to hug me. Weird… a little but I so get it. I was the very first person in 4 years that they have ever met that had CSS. They finally felt like they belonged and weren’t so alone. These multiple day conferences really give you a chance to seek out others with your type of Vasculitis and carry on meaningful conversations with them.   In my opinion this provides so much to Mental Well Being which translates to Physical Well Being in the future.

There are so many intangible things you get from attending a conference and staying in a strange city where you have more time to meet and socialize. It is informative and enlightening in so many ways.   Am I a conference pusher? YES… but it is because I know because of the Vasculitis Foundation Conferences I have a different outlook on my CSS/EPGA and life.   I look around and know I am not alone, I know all things are possible, maybe not in a straight line but in a round about way we have the power to be happy and get through these things. Also I always feel HOPEFUL by the end.   I know I can go on, I get new ideas, new tricks , new tips… may be as simple as realizing no, your rheumatologist can’t OK that medication through your insurance but your allergy doctor can (light bulb moment!).   I always walk away with something new that makes the trips worth it.

I am not going to do the in depth notes of the conference like I did previously but instead I will give you a few insights from the sessions that I went to and hope that other attendees will do the same.

During the break out session for CSS/EPGA by Dr Andy Abril chair of Rheumatology at

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Dr Andy Abril, Mayo Clinic, Jacksonville

the Mayo Clinic in Jacksonville was our speaker.   He that depending on the specialty, CSS may categorize it differently.    Rheumatologists consider it to be an ANCA associated Vasculitis.   Hematologists will put it under the heading of  Hypereosinophilia.  While Pulmonary doctors may categorize it as Eosinophilic Lung Disorder.   Same illness three categories.  We are truly a hybrid is what it gets down too.  (makes you wonder if that is why it is so hard to treat and we can present so differently).  The consensus is 2.4 – 4 per million worldwide have this chronic ailment.  Usually (notice the word usually) it affects people 14-75 years old (interestingly they are seeing more younger patients than in the past).

Once again…  You can be ANCA positive or ANCA negative and still have CSS/EPGA.  There is ongoing discussions about weather there are two different illnesses (positive vs negative) but no conclusive evidence yet except that they see similarities in presentation if you are of one type or the other (but then…  there are many cross-overs hence the Lots more research needs to be done).

We may all be very familiar with the criteria for CSS/EPGA:

  • Asthma (wheezing, expiratory rhonchi)
  • Eosinophilia of more than 10% in peripheral blood
  • Paranasal sinusitis
  • Pulmonary infiltrates (may be transient)
  • Extra-vascular eosinophils
  • Mononeuritis multiplex or polyneuropathy

You need 4 of the six but the deciding factors for most doctors is they also like to have PROOF (yes he emphasized this) of  proof of vasculitis.   This Vasculitis proof can be anywhere in the body but without this proof CSS/EPGA is ‘suspect’ but may not be a confirmed diagnosis.

He also stated the if a patient has Asthma Buy Tastylia / + rhinitis or sinusitis go here + high EOS site de rencontre groupe musique + proof of eosinoVasculitis than a CSS/EGPA diagnosis is 99% specific.   He once again emphasized that documentation of Vasculitis with some sort of Pathological finding is binäre optionen how to essential.

So those were my take-aways from today.   The conference concluded at 4:30 and then the other FUN began.

22 patients and caregivers with Vasculitis took a short walk to an Irish Pub at Jacksonville Landing for a no host dinner. IMG_3667

It was GREAT!  Everyone seemed to become instant friends.  The conference was discussed.  CSS was discussed.  Family, friends, where we lived…   everything was discussed.   I think we were by far a very talkative group and everyone seemed to walk out of the pub very happy with at least 1-2 new found friends (we even adopted an Bechet’s patient).  I apologize because I was in the moment and took No pictures (yes, I am bad….) but being in the moment is so much more important at times.

I have to say the CSS group seemed to mesh very well together and we all seem to be a happy and lively group.  We know that alone we stand but as group we can make things happen and push for more CSS/EPGA research.

Time to go rest because tomorrow starts very early for this girl that is still having time zone change difficulties (ordering room service at 9:30pm because to me that is dinner time in California).

I hope other attendees will post their take away thoughts too.  We all see things and hear things through different glasses so it’s great to hear what others learned.

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More tomorrow….

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

 

 

 

 

 

 


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Jacksonville VF Conference or Bust

Guess where I am?   I feel like Carmen SanDiego right about now. (1990’s joke)

If you guessed Jacksonville, Florida then give yourself a gold star.

I am here to IMG_3639attend a 3 day conference hosted by the Vasculitis Foundation in an effort to better educate patients with Vasculitis.

This may not sound like much but you can imagine if your particular illness only afflicts 2-4 people per million worldwide.   Your chances of meeting another person with your illness is slim.  The greatest part of the conference, for me, is the chance to meet others with Vasculitis and in particular Churg Strauss Syndrome and just spend some time listening to each others stories and learning what medications may work or what some non listed side effects of some medications have happened to people.   Finally you no longer feel like the Zebra in the sea of horses.  You ARE with your herd and it is wonderful.

armadillo

Killer of Chevy Armadillo. Don’t trust these critters.

My trip to the conference wasn’t without my usual amount of craziness.  I came out to Florida a few days early and while driving at night from the airport in Orlando I manage to hit an Armadillo.  Who ever hits an armadillo?  Let’s just say, Chevy 1, Armadillo 0.   Knew I should have gotten that added rental car insurance.

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Always time to get off at a tourist trap on the road to see some gator gifts

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For 10 miles there were signs advertising ‘See the Baby Alligators’ so I did….

I was able to spend a few days with my parents in Florida and then headed for Jacksonville.   Excitement was definitely building as I would check my phone and see people posting as they checked into the hotel.  It was very exciting to see who was there already and trying to make plans to see them.  After I arrived I quickly was able to make contact with a few people from the Vasculitis Foundation’s Facebook group and we met up to go out to dinner.  Conversation was great and it felt so weird to be on of the ‘old timers’.

IMG_3579

Packing your meds for a 9 day trip — always interesting.

While I was listening I remembered those scary first few years and how it was all consuming and I never thought I would be around to see my kids graduate High School.   I realized how important is all that people with ALL types and ALL experience levels of vasculitis come to these conferences.

I think sometime we feel like we ‘know it all’, ‘seen it all’ and ‘experienced it all’ by the time we are nearing our decade of Vasculitis.  What we may forget is how much we needed mentoring and assistance during those early years and how we can now give back and help out the ‘newbies’.   Maybe we can’t give them the magic pill but we can give them hope, that we continue to go forward.  We have full lives and wake up putting one foot in front of the other and move forward.   Is it easy?  ” Hell No!”  but we do it because we all have hope for the future and the discoveries that are happening in medicine and in the field of Vasculitis.   Are we cured?  No. but we still have hope and can pass on caring and compassion that you will get through it and life goes on.

I will try to post as time permits in the coming days but please be patient because at times it is more important to be in the moment with the people who are here than be constantly reporting back.1912051_701754566577397_867637393788059066_n

If you are at the conference I can be found Friday morning at the sign in table.  Looking forward to meeting and probably not remembering many people’s names.  It is a pleasure to meet you all.

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June Churg Strauss Awareness Post

Gill , Essex, UK, aged 45

images

I was a very active child, teenager and adult who exercised regularly each week until about 26 years old. I wasn’t sick from school much, apart from contracting measles around 9 years old and then from around 16 years old I had repeated attacks of tonsillitis and they were taken out when I was 20. When I look back, it’s difficult to say when it all went wrong, but in hindsight there may have been some early warnings of trouble brewing. At 15 years old, I went to A&E with chest pain and difficulty breathing and at this time this was dismissed, apparently if I was well enough to put make up on then I can’t have been that ill. As a teen, I also suffered from terrible mouth ulcers. I think I had more days with ulcers in my mouth than without, that’s what my memory tells me it felt like.

I always worked hard after leaving school, always striving for that better position. In my early twenties on trips to both Turkey and the Caribbean, I contracted awful stomach bugs or food poisoning. At around 26 years of age, not long after returning from the Caribbean, I contracted a chest infection which left me asthmatic and I ended up on inhalers for some years. I was now diagnosed with asthma and on the occasions I tried to stop the inhalers, it just came back.

APSarcoid

Chest X-ray showing the typical nodularity of sarcoidosis in the base of the lungs.

Apart from repeated chest infections and asthma, life was still okay until around 2002 (33 years).   I started to get regular problems with my sinuses. At this time, I had not long been in a brand new, state of the art (for the time), building. Various things were going on in my life – stress at work and I was getting married in 2003. In 2004, I accidently took the lift to the ground floor one day where they were re-tiling the floor and as the lift doors opened it was as if someone has punched me in the face with the smell of glue that hit me and it felt as if I was being stabbed in the nose. Why bother with this, you may ask. I have two friends from the same building, one started to get ill when they were working there and has now been diagnosed with mycosis fungoides, and another who a couple of years later after leaving got diagnosed with sarcoidosis. Maybe nothing but they are only two people I know of, who happen to be friends.

Between August 2003 (just after returning from the Seychelles) and April 2004 my sinuses got worse and worse. When I look back, and knowing what I now know, it never occurred to me that the repeated antibiotics I was being prescribed were just not working and it should have been investigated further. I started to get a cough.

In March 2004 I was coughing so badly, that on a commute to London, people were trying to move away from me on the train. I had to carry water with me everywhere. I was the London Midland trainonly way I felt comfortable to try and alleviate my cough, which of course it didn’t. As I reached London, I realized I could not carry on and lead a whole day meeting and phoned my boss to confirm I was getting back on the next train out to go home. Stress from my job was at an all time high and in April 2004, I left my job with no other to go to. For the first time in 16 years I found myself without a job. From this time my ability to breath through my nose was gradually worsening.

I managed to drag myself to interviews in London and even secured myself a contract, even though I was coughing all the way through the interview which I found quite amusing. My ability to walk at speed was diminishing. Luckily, I was offered a contract closer to home and I started there in May 2004. By this time, I was trying anything to be able to breathe through my nose – Vicks inhaler, decongestants, and steam. I had to leave my friends walking to and from work because I could not keep up, in fact I could barely walk, not because of my legs but my lungs. When I got to both the office and car, I was going through copious amounts of tissues to cough up all the clear sputum that was being mass produced that I just could not get rid of. It was quite disgusting. My husband and I went on a beautiful walk to Pinetum in Kent sometime in June and when I was unable to walk up a slight hill it dawned on me that I was in real trouble and felt the end was close. I saw my GP and she suggested a private referral to a respiratory physician and this happened within a matter of days. That was the best referral I could ever have had. He also specialises in allergy. That consultant has been my rock along the way and boy have I given him some grief.

At his initial consultation from the chest x-ray, after about 20 minutes, he told me the mass on my lungs looked like possibly tuberculosis or lung cancer, the latter of which could be ruled out by taking steroids. Bloods were taken. I started on prednisolone, went back and the patches on my lungs had started to clear very quickly. The bloods showed raised Eosinophils, and he confirmed I had Eosinophillic Pneumonia (EP). Wow, what a difference that made but what I chose not to hear and take in and that time was I remember him telling me that this condition could lead on to another disease. Wish I had my ears pricked up a bit harder. I was just relieved to have a diagnosis that was not cancer and started to feel more human again. The treatment was steroids and since that date I have been taking a seretide inhaler. I had a second case of EP some months later. Sinuses were still causing problems.

In 2005 I became pregnant, now off medication, and had my first child in 2006 and my second in 2007. My bloods were referred to my consultant during pregnancy because they were concerned I might have had AIDS, because my CD4 count was abnormal. Luckily he was able to rule that out. My consultant had predicted that during pregnancy I might feel very well and of course I was. I had not felt so well in ages. Pregnancy and birth were wonderful to me but to stay in that permanent state I would have a huge family and probably be bankrupt by now.

.chf-cartoon-kids

When my second child was 11 months old, I started to feel very fatigued again. Sinuses an every day burden but I think I just got used to the pain. We discovered some mold in our house, which I believe made my sinuses worse and in late 2009, I was rapidly going down hill. The ability to do things was diminishing and so frustrating then I started to get pins and needles in my arms, legs and feet. I was fortunate to be able to ring my consultant’s secretary and on this visit he confirmed that he felt I had now moved on to Churg Strauss Syndrome. At this point I met 5 of the 6 criteria for diagnosis. The only one I have not met is biopsy but most of my problems are lung related and he felt it too invasive.CSS critera 6

Well I cried for 3 weeks after reading about it on the internet, assuming I would be dead within 5 years. I put my consultant through hell. I researched every other possible disease linked to eosinophillia and pulmonary infiltrates that I could find and asked him to confirm to me that none of these matched me. I was even paranoid that I had only fallen ill after being abroad and had I contracted some awful parasitic disease. I even requested a second opinion at the Royal Free, who confirmed the same diagnosis. In the end I thanked him for being patient with me to which he responded it was a pleasure. I guess I was in the denial phase for a long time. All my allergy testing was negative and I am also ANCA negative. In 2010 I was again on steroids but no immune suppressants at this time.

When I tapered off the steroids, I was soon chronically fatigued again. In 2012 my cough was getting worse, although this time a slightly different cough. I didn’t really have any pain, except I was getting more occular migraines and my eye socket on one eye was itchy and swollen. Lying down on my back was slightly uncomfortable. Sinuses as usual were a problem. I went back to see my consultant and the chest x-ray again showed pulmonary infiltrates but also he and I noticed the shape of my heart. I was immediately referred to the heart ward there and then and was given an ultrasound. This time it was a pericardial effusion. So from then on I was seen by a Respiratory Physician, a Rheumtatologist and a Cardiac Consultant. Apart from the cough, this condition did not give me any symptoms at all. So back on the dreaded prednisolone again and I was also started on MMF.

As of today, I am now down to 1mg of steroids and 2000mg of MMF (Mycophenolate mofetil) . I am, according to the doctors, officially in drug induced remission. After 3 years, assuming I don’t go in the wrong direction, they will try and reduce the MMF very slowly.

I know I have been saved any nerve damage so far, even though I am at stage 3, by being referred to the correct consultant for my symptoms at the time. This, I believe is fundamental to everyone’s right direction on their journey forward in receiving the appropriate treatment. I was not coping mentally until I reached acceptance, again I think this takes each individual a different amount of time to come to terms with but makes the journey easier once you have reached this milestone. I have learnt to accept my life will never be the same again. I am no longer regularly under a cardiac consultant but see an ENT instead. I don’t have any polyps, have only a slightly deviated septum and the nasal lining is currently is much less inflamed than it was in 2010. I have also persevered with nasal steroid drops and sprays, which has helped. Because of my deviated septum I have not been able to master the art of nasal rinsing.

doctor patient relationshipAlthough my consultants are not vasculitis experts, they do have seminars with the specialist doctors who are and at least they know what vasculitis is. Every time I see my consultants, I take brief notes and try and impress them with my knowledge, well let’s face it you don’t get diagnosed with a rare disease and sit back and just do nothing. I know my relationship with them and my GP have helped me greatly.

Obviously, being on MMF has not been without problems. My hair is much thinner and dull and dry. I keep catching infections and after a trip to Greece last year, I ended up in A&E with a non specified infection that I had to fight for antibiotics for. I remember thinking in my head, when they were scratching their heads after ruling out a deep vein thrombosis and not even knowing what MMF was – “just give me the damn tablets, I know I am not showing a fever, but I am on medication that might be masking it”. In the end I ended up getting some tablets and came away with a 2850mg a day dose of two antibiotics for 7 days. Within half a day I was back to normal – well almost apart from the effect of the antibiotics. That’s what you get for asking for it.

I feel very lucky that I am not as badly affected as some of other people with this awful disease. I am not religious, but I believe only those strong enough to deal with it have been given this awful fate. The only thing I get sad about is not having had enough energy for my children but my husband is good with them. I worry of course about passing something onto them as the maternal side of my family are riddled with auto immune conditions.

I am learning to listen to my body when it is telling me something is wrong and I have IMG_2564finally learnt when to sit down and rest. I do part time work two days a week and have set up my own little giant bauble business because I know I can never do the long hours that I used to. I don’t bother trying to explain my disease to people who aren’t really listening because they usually only offer advice on how to boost my immune system which is really what I don’t want to do. Only my few good friends understand. Some people think I am lazy but my “in the mind” response to that is they want to look at themselves and I just ignore their cruel comments. I’m still alive and I am fighting. I still have a sense of humour thank goodness.

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 — a CSS warrior who lost his battle in June of 2014.

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Classic Churg Strauss Bingo

beoneonright

Yup, this symbolizes me. Basically the girl on the right.

When I was first diagnosed and in the process of coming to terms with being chronically ill I wrote A LOT!   Now that I have started this blog,  I want to share some of those posts.

Some posts are funny, Some are sad and  Some make you wonder how I woke up each morning and moved forward.   These posts are my history, a part of me and weather they are good, bad or ugly they are part of who I am and have become.

site de rencontre 2000 Originally Written on : April 5th, 2007

(I was officially diagnosed on April 1st, 2007)

http://salsiando.com/finelit/1183 BingoClassic Churg Strauss BINGO

(this was before the name change to also known as eosinophilic granulomatosis with polyangiitis EPGA)

Funny how after months of doctors not knowing what was wrong with me, I now hear the term, “you are presenting with Classic Churg Strauss” from too many of them.

What is ‘Classic Churg Strauss’? And why I am one of those lucky few? And how would they know since I catch them using the internet to search for it and pulling down those dusty medical textbooks.

As defined on dictionary.com —dictionary
http://blossomjar.com/pacinity/3083 Classic –(adjective)
1. of the first or highest quality, class, or rank: a classic piece of work.
2. serving as a standard, model, or guide: the classic method of teaching arithmetic.
3. of or pertaining to Greek and Roman antiquity, esp. with reference to literature and art.
4. modeled upon or imitating the style or thought of ancient Greece and Rome: The 17th and 18th centuries were obsessed with classic ideals.
6. basic; fundamental: the classic rules of warfare.
7. of enduring interest, quality, or style: a classic design; classic clothes.
8. traditional or typical: a classic comedy routine.
9. definitive: the classic reference work on ornithology.
10. of or pertaining to automobiles distinguished by elegant styling, outstanding engineering, and fine workmanship that were built between about 1925 and 1948.

Now after reading all these definitions I have to come to realize I am NOT a car nor was I born between 1925 and 1948.   Although I have Greek Ancestry I am not an antique (that I know of).  This autoimmune disease has made me fight it but it has it has own rules so the warfare one is out.

I think I am of the highest quality and doctors seem to think my Churg Strauss is of enduring interest.  They must because they keep wanting to see me in their offices.

Am I a classic comedy routine? Well, I tend to make the doctors laugh, even if it is a nervous laugh sometimes.

Definitive… am I definitive? Well if we were playing Churg Strauss BINGO I would not need the free space to fill in my row. I can picture it now…

Ok Ladies and Gentlemen,bingo-685x320

Time to get out your BINGO card and play the new and exciting game of Churg Strauss Bingo. Tonight’s jackpot is a lifetime of prednisone and oral low dose chemotherapy. We are playing by The American College of Rheumatology rules.

In order to fill your card you need to fill in 4 criteria and you may use the free middle space.

rencontre slaves If  you want the special autoimmune jackpot then you need 5 squares.   Go for 6 and get the wildcard prize.

Remember we are not playing any regular vasculitis game here; this is the highly specialized Churg Strauss BINGO.   Many will play few will win.  Be the 2.4 per million. Play today.

Ok-
B = asthma
I= eosinophilia [>10% on differential WBC count]
N= mononeuropathy
G= transient pulmonary infiltrates on chest X-rays
O=paranasal sinus abnormalities

And the elusive Wildcard card is…..biopsy containing a blood vessel with extravascular eosinophils.

I got BINGO with the wildcard as of today.   What are your scores?

It’s been 8 years since I wrote the above post on Churg Strauss Bingo but the diagnostic criteria is still correct today.  Notice how it never mentions you have to be ANCA positive to have CSS.  This is a common misconception about CSS but as far back as 1990 it was recognized that you can be ANCA positive or negative and still have a definitive diagnosis 10956057_10153034950254114_900640331162474468_nof Churg Strauss Syndrome (CSS) now which changed got renamed in 2011 to be descriptive of the symptoms to Eosinophilic Granulomatosis with Polyangiitis (EPGA).

I wish once you got a BINGO your prize was a cure.  There is no cure, at this time, for CSS.  It is considered to be a Chronic Illness and will go through periods of Flares (active disease) and quiet periods.  Most CSS patients will be on some sort of ‘control’ medicine for the rest of their lives, these meds may be to control the CSS and keep it quiet or to deal with the damage to the blood vessels and organs that CSS caused.

With each passing year, I see more research into Vasculitis, which CSS is a form of, and progress is now being made to pinpoint something genetically.  Years ago we only had Cytoxan but now we have more biological meds like Rituxan and now is testing is a drug called Mepolizumab (clinical studies now being conducted for patients with relapsing or refractory Eosinophilic Granulomatosis with Polyangiitis).  They have even found out that HLA-DRB4 gene positivity may be a genetic risk factor for the development of Churg Strauss syndrome and may increase the likelihood of vasculitic manifestations of the disease.

So,  although my BINGO card is full so is my heart.  Filled with hope that we will find a drug combination that will minimize the effects CSS will have on patients in the future.1902939_10152826110132881_4264012896430159962_n

 

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Karen in CSS Land — My Pathway to Diagnosis

In the spirit of Vasculitis Awareness Month I am going to republish the story of my diagnosis with Churg Strauss Syndrome, a rare type of Vasculitis.IMG_0845

This is my CSS story. The one I wrote when my world was all confused and I was in both physical and emotional pain. I would like to say things have gotten all back to normal 8 years later but they haven’t.  I don’t want to let this stupid illness rule my life but at times it does. It decides when I can be active and when I need to rest. It flares at the worst times and since I am  labeled as highly refractory, I have never had the joy of remission.  CSS may rule a major part of my life but it does not define me as a person. I still love to cook, and watch my daughter ride her horses. I love to snuggle with my son and have have the weirdest conversations with my eldest daughter. I am still trying to raise so rather co-dependent poultry and laugh and smile whenever I can, which is often!

Please read on, rather lengthy but a look inside myself , my pathway to diagnosis and this rather strange illness.

http://fbmedical.fr/aftepaes/6466 March – April, 2007
My Churg-Strauss Story

Untitled 2

As I sit here attempting to write my story about being diagnosed with Churg Strauss Syndrome I am amazed of how this came to be. The last 7 months seem to be a blur. And my future is a haze. So somehow I sit here caught in the middle. Too scared at times to go backwards or forward. But I know I must go forward. So here is my look back.

Ten months ago (May 06) I was hiking the Grand Canyon with my family without any health concerns. Sure, I was slightly overweight (who doesn’t want to be one dress size less) and I had high blood pressure ever since the birth of my 3rd child 9 years ago. But that was all manageable; 1 tiny pill a day. I was an ex-teacher turned supermom and loving every moment of it.

After 9 years of living with a leaky roof I finally got my husband to agree to a remodel. The work began the 1st week of September 06 with a total roof tear off; lots of yucky black stuff fell inside the house.

My first signs of illness began by the end of that week. It started with hives – mean and ugly ones. Then came a cold with a cough but the cough never ended and I ended up at an urgent care center. I was diagnosed with reactive airways and sent home with my very first albuterol inhalerinhaler_1024x1024 and prednisone (little was I to know that prednisone was soon to become my best friend). As the prednisone was tapered down my symptoms became stronger and now I was running a fever and having night sweats. So back to urgent care where after some chest x-rays (told they were mostly ‘normal’.  I really want to know why doctors use words like ‘mostly’ normal.) I was put on more prednisone and some antibiotics.

Two more weeks passed and by now I was coughing so hard that I was throwing up. Back to urgent care and my first nebulizer treatment. WOW! I thought that was amazing.  I could actually stop coughing for an hour.  It was short lived.

Finally I broke down and went to my regular internist. I started crying in his office because I felt so bad. He listened, shook his head,  patted me on the shoulder and stated I had acid reflux (GERD). Another round of prednisone and antibiotics were started and an acid reflux pill. I walked out of his office in disbelief. I was so upset and I coughed so hard, I threw up on his sidewalk (that will show him!).

By now the only way I could sleep was by sitting up and using the nebulizer every 3 hours. But if it was only acid reflux, then what was my problem? I got ANGRY! This was NOT all in my head. I called an asthma/allergy office and after crying on the phone obtained a header_physicianssame day appointment. It was here that I meet my savior (aka my asthma doctor). He walked in the room and even before meeting me put his hand on my shoulder and stated, “Man are you sick!” Then he sat down and stated, “Talk to me…” It was the most refreshing three words I think I had every heard. And he listened.  Really listened! Never interrupting, never judging.  I suddenly felt like I was going to get better.

The next weeks are a blur.  CT scans of chest and sinus, bronchoscopy of my lungs, allergy testing that showed I had all these allergies (shocking since I had never had an allergy in my life), visits to an ENT (who recommended I go off all inhaled steroids!), visits to an eye doctor because suddenly I was getting blurry vision and my eye pressure was dramatically increasing, too many blood tests and once again an increase of prednisone to 60mg (by now I was gaining weight and began referring to prednisone as ‘evil candy’devils-tic-tacs – I hated it but needed it to breath). And what came of all this? A diagnosis of severe, persistent asthma that was hard to control. Sure they found a rather large amount of Eosinophils (EOS) in my lungs but I did have allergic asthma after all. I was now taking 10 different medications a day! But I was functioning – sure my resting heart rate was over 110 and my blood pressure was dangerously high; but at least I was functioning again! How bad could that be? My asthma doctor had nicknamed my cough as ‘the cough from hell’ and every time I went to see him he always started our conversation with those most comforting 3 words.  “Talk to me….”IMG_3072

Then came the sinus infection. More antibiotics, more prednisone.  I was having a bunch of other strange symptoms too (my one kidney was hurting all the time, I was breaking out in strange rashes, I had this funny pins and needles sensation in my left hand, my chest was hurting) but I kept them all to myself.  I began to think that I was making this all up!  I must be! It was all too strange.  I mean,  I must be a middle age, bored housewife that had nothing better to do but go to different doctor’s. I began to hate myself and my body.

Once off the prednisone (again… can you say taper #8?) Things went downhill quickly. I called the asthma doctor again and asked him I thought it was funny how I always broke out in strange rashes a few days before a major asthma attack. He sent me for another set of blood work. He wanted it done when I was off prednisone.

He called me a few days later and wanted to see me in his office. It was at this appointment that I told him I really thought this was all in my head. I kept apologizing for wasting his time. He listened, I talked.  He got me to ‘fess-up’ to some of my hidden symptoms. He was surprised that I had so many other symptoms. I explained to him that he was my asthma doctor and since my internist 10956057_10153034950254114_900640331162474468_nthought it was nothing (and prescribed anxiety pills for me) I didn’t want to bother him. At this point the asthma doctor showed me my blood work – he explained that my EOS level was at 25% and I was showing signs of a kidney infection. I begged not to go on prednisone again (the mood swings and the weight gain were getting to me). He used the words ‘organ failure’ and I unhappily accepted the pills. I would taper off prednisone once again and then we would do a skin biopsy and another blood test. I was scared! I knew something was not right. The asthma doctor spent an hour talking to me in his office when I told him I thought he should go because he was backing up other patients he answered,  “If they don’t understand than they shouldn’t be patients of mine”

This was the first time I had an out of body experience. I realized when he was talking to me his voice became far away and I was an observer of the conversation. This would happen a lot to me in the coming weeks. I soon came to discover it was my coping lifedidntgoasplannedmechanism.

The next time I tapered off prednisone we attempted to find the definitive diagnosis.   It was at that time that I wrote this.  I think it is best shared in its original format

1 day… 4 doctors.. long day…

Quest for diagnosis continues… Sometimes I think the doctors want
me to become REALLY sick in order to diagnose this! I’m not in the
hospital so I must be OK is the thought…

Today I got to see my asthma guy (who I love!) – and he basically set up a bunch of other specialist appt for me in the coming weeks. He still thinks it’s Churg-Strauss even though my ANCA tests come back within normal limits. Just came off a prednisone taper so we can run tests this week and my cough and my rash is taking over more body parts every day.

Vampire_PNG_Clipart_PictureDid the blood test thing (note to self.. blood techs don’t like being
referred to as vampires…)

Went back to dermatologist to have him re-stitch one of my biopsy
sites. Although my husband offered to do it at home I just thought it was more sterile to go back to the dermatologist.

Visited my friendly neighbor eye doctor to check eye pressure. Still high but just shy of official glaucoma. Noticed he got new office furniture; asked if my frequent visits had helped pay for it. He laughed nervously.

Then it was off to the pulmanologist. We played the “what makes you think this is anything but normal asthma game”.  He had copies of my latest blood work — did a chest x-ray and then came back into my exam room and said he thought it might be obscure auto immune thing called churg-strauss (no **** sherlock!). But he had to run to an off site appt. — as he was leaving he keep saying he needed to see me again. I told him to have his secretary call my secretary. He gave me one of those strange looks.

You know sometimes I think my strange sense of humor is the only thing keeping me sane. In between appointments I went to a book store to look at cookbooks — while there I started crying and couldn’t stop – very embarrassing.  I think I am fine as long as I am busy.  It’s those quiet moments that sneak up on you.

Have an appointment with a cardiologist at the end of the week. My heart just likes to race and make me short of breath. And the earliest neurology appointment I could get was in early May (numbness and tingling in left hand) Now they also want to send me to kidney specialist (darn kidney just wants some attention — I told the asthma guy that it just felt neglected and we should ignore it.  He gave me one of those looks again.) and they also want a GI consult — Hey I thought it was a good thing that on this last prednisone taper I actually lost 10 pounds — I think it all averages out in the end.

It was at this time that I realized I needed to write things down. I suddenly felt the need to sort my feeling out. Too many things were happening.

april-fools-day-bannerWithin a few days my diagnosis came in, the date was April 1st, 2007.   The skin biopsies showed vasculitis. My EOS level was back up to 21%. My asthma was unstable again and the rash was taking over major parts of my body. When I got the call stating it was Churg-Strauss didn’t know what to do. I felt like I was drowning. I explained to my doctor I was waiting for him to say, “April Fools!” – Although I had emailed family and close friends preparing them for this diagnosis; I think in my logical, systematic approach I neglected to prepare myself. Would you believe I even sent a letter to my asthma doctor making him feel better about having to give me such life changing news? I am so busy trying to make others feel better about my illness that I forget that I am the one that needs the comforting.

I tried to explain it to my husband that I feel like I am running and if I stop this illness, known as Churg Strauss, is going to run over me like a freight train. I just keep moving.  Currently I am at the stage that we are trying to figure out what organ systems have been affected. We know it got to my lungs and skin. We have a strong suspicion it has affected my heart (the uncontrollable blood pressure and the tachycardia are all symptoms). I still have to visit a neurologist to see about that tingling in my hand. There are questions about my kidneys (you mean one shouldn’t be able to feel their left kidney?) Since I have lost a lot of weight (18 pounds in 3 weeks but I look great in jeans now!) they are now questioning my GI tract. It is overwhelming! I keep running from doctor to doctor in hopes that the train will not catch up to me.

I am scared.  Who wouldn’t be? I have these unseen cells in my body attacking.eosino I even went through a stage where I refused to eat for a week, deciding that if I didn’t feed these cells they wouldn’t multiply and harm me (dumb! I know!). I am grieving. A good friend helped me understand that having an illness like this makes you grieve. Grieve for what you lost, that carefree feeling; the not worrying about every ache and pain. I know that will settle down in time too. Logically I know – emotionally I am in turmoil.

A few days ago I crashed.  Emotionally.  I went to a doctor’s appointment only to forget that it was rescheduled for another day. After leaving the office I began crying – I felt like that juggler that has all those balls up in the air. juggle-228x300This was my first ball to come crashing down – I panicked, thinking that once one ball came down they were all going to fall. I got in my car and began driving – to nowhere in particular – the important thing was that I was ‘running’ – I needed to keep moving. I drove, and drove and drove. Then I got tired and stopped. I fantasized about going to the airport and getting on the first plane to anywhere; just to run away. I knew this was neither logical or sensible but it was emotional. It was at this time that my phone rang and it was my asthma doctor, he uttered those three words I used to find so comforting, “Talk to me ” but this time I answered NO! I think I scared him! He was trying to figure out if I should increase my prednisone again, since my rheumatologist appointment was still 3 days off. I was running and he was interrupting. He told me to, “hang in there” ; I said it was easy for him to say.  He apologized. I hung up after agreeing to another 10mg of prednisone increase – he kept stating that he didn’t want to visit me in the hospital. After a good cry I returned home to my family. I knew that is where I belong (but a big part of me still wants to run away from this illness).

We will be throwing this thing into remission in the coming weeks/months and then it is all about being vigilant with weekly/monthly blood tests to make sure it stays in remission. The drug mix they use for remission is not always a pleasant one but it’s better than the alternative.

Everything will work out — I will be limiting my activities. (what no skydiving?) The annual camping trip is definitely a no-go this summer. The only camping I should be doing involves room service and a butler. And it’s a bummer that I will have to hire house cleaners two days a week now (no downside here) I have to remember to rest a whole lot more.  A tired body is ripe for the overtaking by these cells.

There are humorous moments during all this. When the dermatologist grabbed me by the arm and keep patting my hand as he lead me to a chair to sit down (note to doctors, don’t ever do this! YouIMG_2930 freak the heck out of your patients!) He then asked me if I knew what vasculitis meant? I was so tempted to say “No, is that something bad?” but I couldn’t I let him off the hook and let him know I realized the seriousness of my illness. There are those days of getting blood taken where you have that hidden set of plastic vampire teeth in your purse – not daring to take them out but it makes you smile as you get poked one more time. There are those well meaning nurses that hand me a glass of water to drink when I am in the middle of an asthma attack (I cough rather than wheeze so this confuses them) – I say thank-you politely. There was my dentist with a sad look in her eyes when I told her about my illness – she asked if there was anything her office could do for me.  I mentioned my house needed to be painted. I need humor to get through my days – sometimes it allows me to stop running for a little while.

I found myself stating to people how ‘lucky’ I was that my illness was caught early. But darn it—I am NOT lucky! I hate that word! I find myself using it as a defensive mechanism

horseshoefor-0317-2
ie: I am so lucky I have a doctor that kept testing things.
I am so lucky in was caught early (wait I have vasculitis already and am in stage 3)
I am lucky I can afford this illness (who in their right mind can afford an illness?)
I am lucky I have kept myself out of the hospital (that’s not luck; that’s pure stubborn woman!)
There is nothing LUCKY about having Churg Strauss Syndrome! It STINKS! But with time and patience I will learn how to adapt my lifestyle. I will stop running and the freight train will not run me down. And when my wonderful asthma doctor says, “Talk to me” I will!  I need to talk and to cry and to scream.

I have learned that life is a precious thing — we get caught in our daily activities and forget that. My new message tagline is, “When life gives you lemons,  say they are from a small independent organic farmer and sell them for three times as much.”IMG_3163

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May CSS awareness post is up

Here is the link to the May 2015 CSS Awareness Post.  Please enjoy  and this month is a little different.  Instead of focusing on CSS as an individual the focus was on how can you help CSS and Vasculitis awareness.

May 2015 CSS AWARENESS Post by Karen in Wonderland aka Suzanne

 


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Immune system suppression and well meaning ‘friends’ — my rambling thoughts

Sometimes I read another person’s blog post that really hits home and want to share it with my followers since it is relevant to what we may be feeling or going through.   I would like to take a minute today to share a blog post that I recently found very relevant and inspired me to write more about it.

Wit a person with Wegner’s posts in her blog A Little Life Comma, about Health Fads and how a simple night out with the girls may turn into you defending your health choices are being bombarding with people insisting on ways to boost your immune system.  Problem is when you have an autoimmune illness is is usually Pills-and-syringebecause your immune system is OVER-active and we take immunosuppressants like Methotrexate, Imuran and Cellcept to quiet it down so it stops attacking our vessels.

Too many very well intentioned but insistent ‘friends’ will spend HOURS talking to you about how you can boost your immune system.  They do this not out of malice but out of caring, they see us with constant colds or worrying about getting a cold or virus and think we need to boost our immune system.  It is hard for them to understand that by boosting your immune system you may activate your immune system into overdrive and began a horrible cycle of a flares.   (a flare is a reactivation of your illness — we NEVER are cured, we just hope to keep things quiet throughout our lives).  A closer look at the autoimmune disease vasculitis and flares article from Stanford University.

500px-Star_Trek_William_Shatner

Yes, I would LOVE to have the magic wand to just reprogram my immune system too. Someday maybe… but until then…

Usually when someone will not listen to me, and insist I need to boost my immune system I juSCCD_1168<_Gloria_Gaynor<_I_will_survivest go to my happy place and sing my favorite tune in my head.  Nothing I can say will quiet some well meaning people down, even after I try to explain to them WHY we need to suppress our immune systems.   We know by suppressing our immune systems we put ourselves at greater risk for infections but we live under a no win situation  ( like the Kobayashi Maru faced by the famous Captain Kirk of Star Trek) and have to sometimes pick the better of two evils.    I hate to admit it but I have gone as far as to drop contact with some of these ‘friends’.  I can’t take being told about herbs, meditation, yoga and what they learned on Dr Oz show the previous day.

PLEASE, PLEASE if you are a true friend of someone with an autoimmune illness LISTEN to us and don’t push things on us.  We would LOVE a cure — We dream about a cure…   We might even do a human sacrifice to the the Volcano Goddess for a cure.  UNDERSTAND we have learned our health is all about Maintaining.

energyMaintaining the best lifestyle we can.

Maintaining the least amount of medications to keep our illness from flaring.

Maintaining the side effects of the medications we have to take.

Maintaining some normalcy in our lives.

AND

Maintaining our sanity at times.

Please DO NOT add to our stress (which can cause flares) by insisting we try your latest find.  We know you love us and don’t want us to be suffer.  We know you just want to help.  We know you want us ‘cured’ and back to our old selves.  Understand we would like like that too, we do not wallow in our diagnosis (at least I hope we have learned not to…)  Understand that we stress ourselves out by trying to make you feel OK about our chronic and incurable illness..

Just learn to be our friendsfriends by listening without giving us cures, quick fixes or your opinions.  Just listen, nod and NEVER say you are sorry.  We HATE that.  Just say I am here when you need a cup of tea (or something stronger) and call us when you are at the the grocery store, stating you are there and what can you get for us — we will never ask you to go for us, we are way too proud for that.   Just be there for us, don’t abandon us because we have to cancel often, instead come to US with take out food and movie so we can stay in our pajamas and enjoy some time of not being alone (ok, and help me fold a load of laundry while you are here).  Understand I want / need to do things myself but could use company while I do them.

Yes, there are definitely alternative therapies that can help us along, lessen the pain, lower the inflammation, or just help us along the path of this bumpy journey but bizarre-cures-tapeworm-dietplease do not offer us ‘cures‘ and please STOP trying to BOOST our immune systems.   We need our friends to act as friends with open arms and ears.   We need people that listen and who don’t try to fix us or cure us.  Just be our friends and we will reward you with our unique sense of humor and new found views of the world around us.

 

 


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April 1st is a strange day for me…..

april-fools-day-bannerThe 1st day of April is also known as April Fool’s Day in many parts of the world.   I never really liked the day….   I was never into the ‘fooling’ mode.   The day was just an irritant to me.   Eight years ago April 1st became something more to me, it became my anniversary.   When you have been diagnosed with a life altering illness you suddenly have a new anniversary.   April 1st, 2007 was the day my Asthma Doctor dialed my cell phone and told me that I had Churg Strauss Syndrome (CSS).

I was driving at the time….   I pulled over to the side of the road and listened.  Weird thing is I searched  my symptoms and the tests my doctor was running on the internet and realized this is what he was looking for a few days before.  I already looked up what CSS was and what the outlook was.  I knew deep down that I had this chronic, incurable illness even before the words were out of my Doctors mouth.   He wanted me to come right into his office so we could discuss this diagnosis.  He was so worried about me, I could hear it in his voice.  I refused to come to his office, I refused to talk about it.  I began running… 8iz4qnBip I wanted to drive as far and as far as I could just to get away from this diagnosis.  In 2007, the prognosis for CSS was not as good as it is today.  The statistics out there were frightening and I wasn’t sure if I would see my kids graduate High School.  I was scared and needed to run.

I have to say this running continued for many years into my diagnosis and even today I find myself needing to run at times.  Eight years is a long to co-habitat  with a chronic illness.   I get tired of all the medical appointments and although I have learned acceptance and have had to adjust some of my hopes and dreams I know all things are possible but I may have to alter how I obtain those dreams.  These last eight years has allowed me to learn, laugh and love.  I appreciate life more and know how precious even the little things are.


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