I Came, I Saw, I’m Conquering Vasculitis
“Veni, vidi, vici” is translated from Latin as “I came, I saw, I conquered.” Julius Caesar first said this after a victorious battle. Having a rare illness is a battle every day. I battle to stay alive. I battle to live a fulfilling life. I battle to get out of bed.
Fourteen years ago, I was medically naïve and blissfully ignorant of the rare disease and chronic illness communities. Having an illness with no cure was the furthest thing from my mind. I was raising three children with plans to return to the educational workspace in a few years. My life was hectic, medically boring, and ordinary.
It’s funny how things change and we have to adapt. I was thrown into the world of medical rareness with a case of hives and a cough. Not very rare or interesting — even my doctor seemed disinterested.
As the months progressed, so did my symptoms. My medical chart was growing. My doctor was becoming more interested, and I had more doctors ending in “-ologist” than I could count. By the time my random, growing group of symptoms was finally given a name, I was on a first-name basis with many of my “-ologists” and had all their private numbers on speed dial.
I realized my disease was medically interesting when medical students and other doctors stopped by during my appointments to talk to me about my symptoms. I still could not comprehend the implications of having a rare, incurable illness. I was happy being naïve and blissfully ignorant.
I was diagnosed with Churg-Strauss syndrome, now known as eosinophilic granulomatosis with polyangiitis (EGPA). Many of my doctors had never seen it before. I found it humorous when they entered the exam room with articles freshly printed from medical websites or even hard-bound medical textbooks.
I have had many blood tests, procedures, and investigations. I have been on both “tried and true” medications and experimental ones. I have refused to give up my dreams despite EGPA, treatment side effects, and never-ending fatigue.
It has been a long 14 years of educating myself and learning about my illness. Unfortunately, I am no longer medically boring and ordinary. I can no longer be blissfully naïve. I can now pronounce different types of specialty doctors, such as rheumatologists, cardiologists, nephrologists, and otolaryngologists. I understand the difference between an X-ray, a CT scan, an MRA, and an MRI. I can explain bronchoscopies, endoscopies, and biopsies in way too much detail.
I have had both highs and lows during this time. My illness has had some wild flares and quiet times. I have never been in remission, and I’m OK with that. I have learned to see the world differently, and I have adjusted my dreams.
I came, I saw, I’m conquering vasculitis (“veni, vidi, vascie“), both mentally and physically. I encourage you to join me on my battles as I share my past, present, and future dreams and adventures with ANCA vasculitis.
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Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
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Comments
Lori Luttrell
I loved this article. I tried to put in 5 stars and it only took one.
Suzanne DePaolis
That's ok. I'm glad you enjoyed the article.
Barb troccia
I'm so happy u write about our diease. It took 6 yrs to diagnose me. How did we get this out to the public more? I have GPA it is maintained with infusions every 6 months.
Suzanne DePaolis
I recommend looking at http://ancavasculitisnews.com/causes-of-anca-vasculitis/ for more information.
Suzanne DePaolis
Please share it! Copy the article link and share it through social media or email. ANCA Vasculitis is rare, so it's up to us to get the word out.
Sheila Le Mottee
Great article, and some of her experience is spot on with my own (I have GPA and kidney failure). Thankfully, I have been in remission since February 2017. I was admitted to a research hospital in Canada prior to receiving a diagnosis. Once diagnosed, I can’t tell you how many medical students came to my bedside, mostly all asking the same questions. But that was ok. To be honest, I was glad of the company and attention. It can be pretty boring lying in a hospital bed. I too was happy to be blissfully ignorant while my daughters tried to explain what they had found out about my illness. I really didn’t want to know the details. Not knowing allowed me to believe it was less serious than it actually was, for a time. I felt that knowing the reality might be too frightening.I had been intubated for 5 days and given only a 50/50 chance of survival. Once I survived that, I wanted to believe I was out of the woods. I was going to need all of the positivity I could muster to recover, even if it meant being ignorant of the details of what lay ahead. Once I was stronger I did make the effort to learn more, and now I understand the details of my disease, the treatments and their effects. I read research studies and follow information about trials of new treatments. I have come a long way from the woman who was lying in a hospital bed, sometimes being talked to by doctors and others as if I was a child. Being physically incapacitated doesn’t mean mental deterioration. Unfortunately, the physical condition one is in after extubation tends to give the impression that your mind has been affected. This led to tremendous frustration on my part, because for several days after extubation I couldn’t talk or hold my head up. My inability to communicate even led to a level of bullying from one nurse who became quite a different person when talking to my daughters. I couldn’t wait to get my voice back. But I digress. Like Suzanne Depaolis, it felt like my life changed after I was hospitalized despite the road leading to my diagnosis. I am grateful for this vasculitis web site to keep us informed of studies and new technologies and for giving a voice to those suffering from various Anca vasculitis diseases as well as social media sites that allow us to connect and support each other.
Suzanne DePaolis
I'm glad you have found this site. It is full of useful articles and columns. It makes having ANCA Vasculitis less isolating.
Dianne F Allain
I was just diagnosed but my blood work is so wonky after taking methotrexate.My hair is falling out and my platelets are going past 550 and my hct as well as basos are high.I have 2 rare diseases one fighting the other.1,st is Polycythemia rubra vera.and now ( maybe Anca vasculitis.)So much pain times coming as attacks not sure were i,m going with this but i,m trying to push through each day.Love the article Thank you for sharing...Dianne
Sandra M
I enjoyed this article it is positive and hopeful. 3 years in with GPA vasculitis and currently well controlled. I totally lost hearing but have partially regained. Hearing aids have proven quite helpful.
Suzanne DePaolis
Thank you, and glad you have your illness currently under controll
Sandra
I have been diagnosed with Webeners Vasculitis...symptoms have persisted nearly a year now..have been to several "ologists" and have little relief of symptoms which include, senses loss (hearing, taste, smell, etc)..weight loss (30 pounds) sinus infections (have had 3 surgical procedures) face, jaw and head pain. I am on Methotrexate (up to 6 pills a week) and no relief so far..I am at present trying to get a referral from one of my "ologists" to see a specialist at U Texas Southwest in Dallas and have spent nearly all afternoon on the phone trying to do so..I have an ENT appt tomorrow hoping he can help with some of the facial pain I am experiencing. I so wish I could state that I have my illness under some control but so far not able. I would appreciate any suggestions you have that might help me move forward..I'm exhausted as well as frustrated..
Suzanne DePaolis
It took me many years to find the combination of medications that were right for my body. Unfortunately, there is no magic pill. My words of advice are to be persistent. If you are feeling something is wrong, talk to your doctor. If that doctor doesn't listen, find another doctor. You are the best advocate for yourself, and persistence pays off. I went through 4 rheumatologists in 4 years until I found the perfect one for me.
Sharona Lawrence
I am newly diagnosed with Vasculitis but in all honesty I don't have the symptoms that go along with it. lst started last year after 2 bouts of pneumonia landed me at ER and lab work showed blood in urine. Then protein in urine. Initially diagnosed with Chronic Kidney Disease Stage 3.5. Last week, I had a kidney biopsy that showed vasculitis but my DR wants me to wait till after I get my 2nd vaccine shot to start medication. I have been trying to read as much as I can on this but so far don't match up with majority of symptoms (YET). I do experience shortness of breath after climbing steps. And I have leg cramps (especially at bedtime). Ruled out HIV, Hepatitis, No Diabetes, Not a Smoker. No Weight Loss (in fact I've gained weight since my last 6 month check up). I am going for additional blood/urine work next week then I have a meet up with my DR in April to discuss options. Its pretty scary reading up on the drugs and their side effects as well. On line I came across this article and thought maybe I could get some answers. Has anyone else been diagnosed with Vasculitis without all the typical symptoms?