When you suddenly become sick with any illness you find yourself feeling very small. Navigating the world of doctors, nurses and other medical personal is like entering a strange new world. You find yourself losing your voice and unable to speak up when something is just not right. Any insecurities you may have are magnified and suddenly you may be unable to advocate for yourself.
A.A. Milne’s Piglet in Winnie The Pooh says it best. ” It’s hard to be brave when you are a very small animal”.
I am 10 1/2 years into a lifetime of Churg Strauss Vasculitis and my voice is scared and weak at times. I pride myself in being able to help other patients out and helping them to self advocate but sometimes I find myself unable to follow my own advice. As, a patient you get put in situations that are scary and you depend greatly on the trained medical staff around you. Most of the time they are amazing, but sometimes you get someone who’s either having a bad day, needs more training, just doesn’t care or is totally burnt out.
Yesterday, I began home IVIG treatments. I get Intravenous Immunoglobulin (IVIG) treatments once a month so my immune system is strong enough to fend off common illness and bacteria. I have hypogammaglobulinemia because of years of Rituxan usage to keep my Churg Strauss Syndrome under control. I have been doing these at a medical center but my insurance company had decided that I was no longer allowed to have them at a medical center and I would have to get them at home from a home infusion nurse. I was not happy about this, I fought it but finally had to give in so I anxiously awaited the nurses arrival.
She arrived and I was hesitantly psyching myself into the fact that this would be a better way to get my infusions. I have a mediport installed so there was not the problem of trying to find a vein for an IV. It’s a simple stick into the port installed under my skin, I’ve never had any issues with it. That’s what I thought.
My first clue that something was up should have been how disorganized this nurse was and how I had to remind her I needed to take my premeds. The putting the needle into a mediport is a sterile procedure, the chance for infection is high if procedures aren’t followed. I watched her, and again saw some problems. Once again, I did not speak up. She was going to stick a needle into me, I sure as hell did not want to make her angry.
She inserted the needle and it burned like hell, something was NOT right! no blood return… I told her she was not in the port — she didn’t believe me. Finally she believed me and pulled out the needle. It was totally bent. I pointed this out and she stated.. “sometimes the needles come that way”, I knew this was not right. But I was feeling so small, and so vulnerable.
I stupidly allowed her to try three more times. Each time was worse. I actually cried since once she tried to insert in Heparin to prove it was in and instead it went into my tissues — I yelped, I cried, It burned like hell. Still I was the polite patient… I actually told her not to feel bad about it. What the heck was I thinking? It was totally her fault. IF I saw someone doing this to one of my family members I would have stepped in and yelled at them but instead I just cried and took it.
Finally she tried one last time. It had to be the last time since she went through ALL my back-up supplies. It went it and was finally working. I then had to sit there and be pleasant to her and thank her. She then proceeded to move my medication to IV bag from the original containers and give it to me (that was another fiasco…)
In the course of the conversations she had with me I found out she has severe carpal tunnel in her hands and had lack of feeling in them. She shared this because she was going in for surgery in 2 weeks. WTH? What was she doing trying to insert needles then? Suddenly all the things she dropped made sense.
Six hours later she left. I actually Thanked her for coming (what was wrong with me?). The door shut and I let it all out. I screamed, I cried and I cussed like a sailor. I thought I was going insane so I texted a friend and she was appalled by what happened.
WHY could I not advocate for myself and kick the nurse the hell out of my house? Why did I allow her to cause me such great unnecessary pain?
The answer is weirdly simple. I was always taught to respect people in the medical profession. I was scared she might hurt me even more if I told her what I really thought. I was sick and felt powerless. I was Piglet.
The medical company that oversees my IVIG medication called me today. I told then not to ever send that nurse again. They asked me what happened. I explained the 4 bent needles and her spending way too much time time transferring the IG solution into an IV bag. They were taken back because it is not policy to break the sterile environment and transfer this medication, it was suppose to be given directly from the bottles. I didn’t know this. I also told them she had Carpal tunnel and the hand problems, they were also totally unaware of this. There were a few other things but I thought this was enough to tell them. They promised me a new nurse next month. But, what happens if the next one is even worse?
I think we, as patients, can be strong for everyone else but have trouble sometimes advocating for ourselves. This happens both with procedures and in a normal doctors visit too. I have to Stop trying to do this all on my own (I prefer for nobody to see the ‘sick’ me). I need to start having a loudmouth, outspoken advocate with me. I need someone to ask the questions I am scared to ask and point out when something is not right.
I think, as chronic illness patients, we don’t like to ‘bother’ others. So, we suck it up, and just do things on our own. We don’t like for others to see us in pain, so we hide it. We feel helpless at times and we keep it all inside. We don’t want to be labeled as problem patients.
I have taken a friend, as an advocate, to a few of my doctors appointments in the past. Usually difficult doctors and I want to know I am am crazy or it is a problem with the doctor. My friends always introduce themselves as the advocate and have a list a questions we have talked about, one in particular can be a real forceful bitch, but that is just what I need sometimes.
Piglet learned to be brave with the help of his friends. I need to take my hint from Piglet and learn that I am not a ‘bother’ to my real friends and let them help me. Ten years in and I am still learning. Please take my advice so you can get better care too. Don’t wait 10 years to realize you may be very small but you can be brave and speak when something is wrong with your medical care.Other Posts by Karen in Wonderland
Posted in CSS, Uncategorized by karen in wonderland with 2 comments.
Diagnosing Churg Strauss (CSS) is difficult at best and nearly as hard as finding a unicorn at it’s worst. Part of the problem is that Doctors may have never heard about CSS. In a lot of medical textbooks it takes up less than a page. Diarrhea is more covered in medical textbooks than CSS and other types of Vasculitis.
We are rare. I fully understand that we may be only case our doctors ever see. Most of us end up in the hospital with some organ damage before diagnosis. Wouldn’t it be nice if more people could be diagnosed before organ damage? before lengthy hospital stays? before they have to numerous doctors all while feeling they are ‘making all their symptoms up’? Is there a way to better educate doctors about CSS and other Vasculitis diseases?
How much is it worth to you to educate doctors? How much would you be willing to give so doctors to know we are not such a rare anomaly? How much would you give to help doctors the knowledge to better manage our illness?
I ask these questions because you have a chance to help. You can make a difference.
The is sponsoring a class for doctors (aka CME class — doctors need to take so many of these per year to keep their licenses active). They are partnering with the Cleveland Clinic to offer such a class. It’s called, Primary Vasculitides: Best Practices and Future Advances. They need OUR help in order to make this happen. Would you be willing to give a few dollars to make this happen, especially on Giving Tuesday 2016?
It’s going to first originate as an in-person, one-time only presentation through the Cleveland Clinic next spring. They are going to record this entire session and then turn it into an online CME course that doctors anywhere can access and use. This makes it so once available online we can gently steer our doctors toward it.
Here is the link to the course information:
Educating ourselves about our illness has always been my #1 priority. So this opportunity to educate doctors is an easy donation for me to make. I understand our medical expenses are astronomical at times and we barely have a few dollars to spare but if you do this would be a great cause.
Share and post this to you wall. Can you imagine if just 1/4 of your friends and family gave $5 each what a difference this would make in helping to educate doctors. Imagine if someone you knew was looking for a great cause to donate to before the end of the year decided to give $100 or more? Don’t ever think small donations do not add up, they do! So, please think seriously about giving any amount to help educate doctors so that they can better help us and yet to be diagnosed patients. You do not have to wait till Tuesday to donate.
This post is easily shared though my Karen in Wonderland Facebook Page.
Also you are much better off donating to the Vasculitis Foundation than donating to dig a big hole.
Here’s the very easy to use direct donation link. Not the one to dig the hole.
Thank you, and with Education we have a better chance of better outcomes and better quality of life.
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Posted in CSS by karen in wonderland with .
This 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.
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.
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)
From National Asthma Council Australia here is another chart.
Look around their site it’s full of great information http://www.nationalasthma.org.au/understanding-asthma
Lastly a 32 page PDF 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.
Posted in CSS, Uncategorized by karen in wonderland with .
Gill , Essex, UK, aged 45
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.
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 only 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.
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.
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.
Although 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 finally 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.
Posted in CSS by karen in wonderland with 1 comment.
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.
Originally Written on : April 5th, 2007
(I was officially diagnosed on April 1st, 2007)
(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 —
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…
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.
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.
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 of 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.
Posted in CSS, Uncategorized by karen in wonderland with .
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.
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.
March – April, 2007
My Churg-Strauss Story
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 inhaler 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 same 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’ – 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….”
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 thought 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 mechanism.
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.
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.
Within 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. 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. This 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! You 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
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.”
Posted in CSS, Uncategorized by karen in wonderland with 1 comment.
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 because 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.
Usually when someone will not listen to me, and insist I need to boost my immune system I just 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.
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.
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 friends 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 please 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.
Posted in CSS, Uncategorized by karen in wonderland with 2 comments.
OK, we will first say that this picture makes me look heavier than what I actually am…. Yes, my vanity is the first thing I think of.
I jumped at the chance to nominate my doctor whom I fondly refer to as my “asthma god”. Dr Torrano was the doctor that believed me when I stated my cough was not acid reflux and anxiety after I had been dismissed by 2 other doctors. He worked with me to find out what the heck was going on with my body and he ran the tests on the hunch that I had Churg Strauss Syndrome.
Dr Torrano has been there for me over the past 8 years and thanks to his watchful eye and listening to me has helped me catch flares and keep all my organs working. He understands that some days I come in with my prednisone ‘bitch’ on and others I am scared.
I have always felt angry that some of my other local specialists seem to dismiss him and not realize how much his care has helped me stay in control of my CSS and am now grateful I go to UCSF medical center to a Vasculitis Specialist who works closely with Dr Torrano on my case.
It was a big surprise when I was notified Dr Torrano was to receive this very first RED award. I was so happy for him, that he was finally getting recognized for the amazing diagnostician that he is. He was interviewed for the September / October VF newsletter and it is now available for public viewing.
Also I wanted to attach the nomination letter that I sent in for this very special doctor. Here is what I wrote — very hard to keep it to 350 words
My first cough and rash happened in Sept of 2006 during a home remodel project. I went to my GP who told me I had GERD and anxiety. After repeated visits he finally prescribed me an inhaler but basically told me if I just calmed down I would stop coughing. Funny thing is my ‘imaginary coughing’ cracked a rib.
This was NOT all in my head. I called an asthma/allergy office and after crying on the phone obtained a same day appointment. It was here that I meet my savior (aka my asthma doctor) Dr. Robert Torrano. . 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.
Dr Torrano ran test after test, never tiring, always willing to keep looking. He called me after hours and from his home phone to check up on me and constantly assuring me that we would get an answer. After 4 tireless months and countless prednisone tapers, His hunch was proven correct. I had CSS. He made sure I always went to the best doctors and followed up on every test even if he did not order them.
Once Dr Torrano 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 should not be patients of mine”.
His motto for my illness is to catch everything early to avoid any permanent damage. When nothing else was working for me He personally investigated the then experimental drug Rituxan and he made it his mission to make sure my rheaumatologist and insurance approved it and put me on it.
Dr Torrano is my ‘rock’ in the sea of uncertainty of Vasculitis.
Posted in CSS by karen in wonderland with 2 comments.
I was asked a question about remission and CSS in a FaceBook group and I’d thought I would re post my answer here so everyone could see it — it may not be the popular answer and I base my answer on my research and personnel experience and those CSS patients around me who I have the privilege to know for the past 8 years.
As a precursor to this answer I have to say I believe acceptance of having a Vasculits and autoimmune disease is VERY, VERY hard. When I was first diagnosed I fought it.. kicking and writing… I read but did not listen to those with more experience who preached their quiet acceptance of CSS… I hated them for accepting being on pred for the rest of their lives. With time comes clarity and understanding. so here is my answer to the question about my views on remission.
My views on . “time to remission” may not be what people would like to hear. In personal experience, I have had CSS symptoms for 8 years now and was Diagnosed 7 1/2 years ago.. I have NEVER been in remission…. Because I am considered, ‘highly refractory’ I may never be in remission… So I may have a rather dark attitude toward the term remission.
Too many Vasculitis patients consider remission to be off all meds (especially pred) and that just isn’t the realistic case in most patients — Most CSS patients will find they need a daily maintenance dose of prednisone to keep their illness from flaring (a maintenance dose of prednisone is considered anything under 10mg from my understanding). Inflammation of our vessels is the danger zone we live in — prolonged, uncontrolled inflammation will cause permanent damage to blood vessels which in turn causes damages to organs. After years of fighting prednisone and some of my other meds I have finally accepted the fact that prednisone is NOT my enemy — it is my savior… Without it or with insignificant amounts of it I would have major organ and maybe irrecoverable organ damage.
My doctors have always ‘hit’ my CSS with large amounts of prednisone to quiet the inflammation ASAP so it did not cause any organ damage. I have been on 80mg and more of prednisone more times than I care to remember. Remission is a word I really do not like anymore…. I prefer the term of quiet… under control…. no active inflammation at this time. I resent the fact that when we are first diagnosed the word ‘remission’ is put out there and then doctors give unrealistic timelines… that we hang on to because we really want our old lives back, we just want to return to who we were with all the boundless energy. How can a doctor say, “9 months to remission” when they really have no idea… there is no medical definitive for Vasculitis clinical remission and the doctors can’t even agree on the definition of remission for Vasculitis.
I can look back in my notes over the past 8 years and see where the definition for remission in Vasculitis has changed again, and again… I think the cyclical nature of Vasculitis is the best diagram that I have seen and the most realistic in terms of the cycle patterns of our illness. I also think every patient is different and how the inflammation affects us is different (along with the how effective certain meds are on different patients). I really believe there are sub-classes of CSS…. not just ANCA positive and Negative and with more genetic testing and realizing how our CSS became activated we may get a better understanding in the future.
Hope this rambling of an answer helped…
Posted in CSS by karen in wonderland with .