Battling GPA for Half My Life
I reached a milestone in November. Half my life ago, I was diagnosed with granulomatosis with polyangiitis (GPA). On Nov. 16, 2001, I was near death when I was admitted to the emergency room. Nineteen years later, here I am. Each of those years has been a bonus in my life.
You can read all about the beginning of my journey here. I was discharged from the hospital the day before Thanksgiving in 2001. So, each Thanksgiving, I think about that dreadful time. I also think about the fact that each Thanksgiving marks another year of victory against GPA.
Over the years, I’ve gotten used to my normal symptoms and the restrictions that come with GPA. I have joint pain, especially in my knees. Cuts and bruises take forever to heal. Fatigue pops up randomly. A pile of worry comes with every cold or other illness. I get random stabs of pain all over my body. I take methotrexate, so I don’t drink and am careful in the sun. Weight loss is a struggle. Doing anything that requires physical exertion is challenging.
I am so used to these things that I forget it’s not normal. When I think about what is normal, I become jealous of others my age who are healthy. I wonder what it’s like to not feel 20 years older than I am. Then I get mad at myself because I remember that my life now is all extra time, and avoiding parties and other things doesn’t mean I haven’t had nearly two great, albeit challenging, decades.
I think the most difficult part of dealing with GPA involves doctors and insurance. I’ve changed jobs several times, which has meant moving to different locations and switching medical practices and insurance providers.
I hate finding a new doctor, because I always wonder if they will be familiar with my condition. Will they listen to me? I never know what to expect, because each doctor and medical office is different. At some places, I see the physician’s assistant, not the doctor. Sometimes practices do in-office lab work, and sometimes they don’t. Some doctors want to see me every six months, and some every six weeks. Some require referrals, some don’t.
As for insurance, that’s even more stressful. For example, I currently have no insurance. I just started a new job, and the healthcare plan doesn’t kick in until January. Thankfully, I have been able to afford my medicine and lab work. I was stressed over the costs, but I got a steeply discounted price for my methotrexate through GoodRx, and the nice nurses at the lab found me a discount.
I have to be really careful because I can’t afford to end up in the hospital right now. I have been sheltering at home since March due to the pandemic, so hopefully, COVID-19 will stay far away from me. My job is remote, so I’ve only left the house to get lab work done.
This is not the first time I’ve gone without insurance for a bit. I’ve dealt with it every time I’ve changed jobs. It’s always nerve-racking. I wonder, will I get sick? Will I have a flare? Can I afford the medicine that keeps me alive?
It’s strange to think about everything I’ve gone through in the last 19 years. While writing this column and thinking back, it occurred to me: I am happy.
I love my new job, and it pays a lot more than my last one. It’s remote, so I don’t have to worry about going out during the pandemic. I live with my mom, and we get along perfectly. Plus, I get to eat home-cooked meals all the time!
After many years of ups and downs, I am finally in a place in which I smile every day. I laugh every day. After my diagnosis, I didn’t think this could happen. I thought GPA would crush my body and spirit. And at times, it did.
Now, for the first time in my adult life, I am content. It feels good.
***
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.
About the Author
John
As someone who was diagnosed at age 61, I know I will never be able to say "I've lived with this illness half my life. From now on, each year forward you will have lived more than half you life with it. And I hope it goes on for a very long time.Wonderful to read your story. Best to you.
Sylvia McMahan
Love these stories, don't feel so alone. :)
Jo Ann Landon
Love your attitude Sandra. I have GPA also. Your an inspiration and I love your articles! Thank you so much for sharing. It is nice to know I am not alone in my abnormal life.
Silvana Barone
Sandra, I was 16 years old when I was diagnosed with wegener’s granulomatosis. I was living in Italy and spent 8 months going from one hospital to another and no one could figure out what was wrong with me. I came to the State thanks to my uncle who was living in Providence RI and the next day he got me to see a doctor in Boston. After few tests they found out I had Wegener’s. I am 56 years old I had been through so much in 40 years. Cancer three times due to the cytoxan that was giving to me for over 10 years. I have seen so many doctors because like you said not all the doctors knows about wegener’s. Sometimes I feel so frustrated to tell the new doctor all my story over and over, but we are still here. Certainly this year was the worst for me. I lost my mom and I feel so lonely, so empty without her. She saved my life many times. This summer I started gardening because I couldn’t get out so I kept busy with my garden. I just hope I can get the COVID vaccine ASAP and get out of my hole, see family and friends. I am too tired of worrying all the time. I read your story and I can’t believe how similar is to mine. I wish we could keep in touch. I am deaf because of wegener’s. I was planning to get a cloclear implant but then he’ll broke with COVID and had to cancel everything. I have not gone to see my doctors since January. I am afraid to go to the lab to get my tests done. But hopefully we will get the vaccine soon. Thanks for sharing your story.
Sandra Ross
Wow, 40 years! That's inspiring in itself. You have been through so much, and 2020 was really rough. I was also scared to get my lab work done, but thankfully the medical facilities are the places with the most stringent COVID-19 regulations. I hope that you are able to go soon, and I certainly hope you can get your implants! Every day is a day closer to getting that vaccine. Thank you for reading.
Silvana
Hopefully bad times will be over in few more months. I loved your story. Thank you for sharing and inspiring people to go on. We can’t let our disease get us....we are strong
Ana Landis
I was diagnosed February 2020. The in set of my symptoms tho, now that I know what they were, dates back to June/July 2016. Funny enough, I was struggling with two babes under 2, a husband that wasnt, a baby afraid (and air was mommy) and stressed to the hilt.
Lost my voice, laryngitis, Sept 2018,... Had rubes put in my ears Jan 2019 because my lymoharic wasn't draining...
Blind week always shiwed signs if minor infection, but nobody could find it. Antibiotic did nothing. They were lost. Finally went to a specialust ENT after seeing this specialist ENT... Only to finally crime up to a doc with scruples. He had me tested without telling me for what. This was after seeing me three times in a matter of 2 months. Each time he scoped. First time I as alone. The 2nd with my ex. The 3rd Aline. On the 3rd he made a bold comment. You are right. Everythig you are experiencing is definitely stress related. I saw the dynamics... Rhar was tempered down I know, that was too intense. He SATs again, stress. Please do this blood work. I am gounv on a hunch, pls.
2 weeks later I'm called in. He says he warns to do licalzed injection if vocal chords to help reduce swelling, and then we can get MTV voice back. GREAT! then he tells me I have weganers. He writer it down.he sjwletally explains it. Tells me he is already referred me to rheumatiligist. I was in within 3 weeks. Day b4 local injection, just need thus doc OK... And pandemic shurx the world down as I got the ok.
I was treated systemically. Let's understand:
Presented to them:
Happy, smiley, scared 44yr old single mom of a 5&6yr old. Titally healthy. No complaints. No pain except throat after talking a lot with well, laryngitis still since sept 2018... And a right shoulder that was being stubborn in rotation once per while... Otherwise in perfectly healthy presenting, strong, agile, energetic, bur noticed slow to recivery bumps and bruises, pupura, no voice, EXTREME night sweats, like pool makung levels), but otherwise, all goof.
On the other hand, dad dying of CKD, mom soon to be diagnosed with Alzheimer's, and an older sister that could care less, judge, blame, criticize, etc, assume the worst... She annoyances to the world of her knowlwdgw that her sis us unfortunately an addict (by her opinion based on observations of me over a thread year period and seeing me all of 7tims of for a family dinner, seated furthest away from each other)
Well..m I believe my dad may also gave weganers. Just undiagnosed. He and I gave same symptoms, outside of the CKD, the nose, the scabbing, the eyes and the in and out of foggy sight, .. But nobody will test him Cruz its impossible.
I can say this: I Saudi I believe genetic ties in this disease since Feb of 2019... And insisted in August 2019. Not until the last 2 months has there been any indication of genetic or hereditaey ties...and I looked.
The rheumatologist claimed she knew jow to treat me. Systemic pred at 60 mg 2wks, reduce by 5mg weekly. Got to 40 and body bucked. Now this headaches from 2016 were back. I forgot about those... The other aches and pains. The brain fog, etc... I was put on methotrexatw. I was not sat down and given a true risk benefit analysis. I had no kidney issues, no bladder issues, no nerve issues, no John issues, migraines were less than sporadic,
3 months into methitrexate, I started having issues. Tested and now have kidney stones. A possible side effect. I have bladder debris. Another possible... Muscle soasms... Yup.. Check, psrtial intermittent paralysis, suddenly hired when j was in ride with my motorcycle and in rysh hour traffic, and I cannot left my foot to shift gears all if z sudden, I cannot deorsx my clutch, on my left, OH YEAH u couldn't lean left and was iverbearung in right side, so bends, turns, beyond life threatening... When I exprssed these probkens I was tiled or get a geio and be rational nx not gave her speak to the steroid me...
I coykdnt stop seeing her... She was the only doc to treat this until my referral goes to the specialty clinic...
Only to find they will NOT be fynctionng at even 50 capacity duE to CVUD but I was not a priority because I was being treated. The fact that I became bed ridden, unable to conduct daily chores as a single mom with NO SUPPIRT network available readily, WTF..
I STOPPED METHO... I UPPED MY PRED to 40... new specialist on anca vascu.. Told me to up again to 30... Did Nada
On 40 for past 1.5mo and my chords are vibrating again. I am more energetic . more me... Since b4 I started trestmdnt..
I do not trust their methods as now I'm prescribed lefluemide.. OMG!!; Risk benefit?! 40% reviews rant and rave IRS amazing. GREAT! Other 60% is finished BG the loved ones... The 50%craps shoot is death. Same as for the biosimilars... 50% acceleration... (Rate? Not specified)... Or 50% remission... But flare or either expected within 8.9 mo... And possible acceleration.
I am so Beyond lost. And I am not one to be "beside myself".. But I am!!!
If where us a 1%chance if getting sued effect, I will hold my hand up chances are I am the universally elected one. So what do I do now?! They made me more sick than I ever was. I feel 1/4of the mom I once was before they put me on a protocol. Do I stop everything? They don't k ow. I don't know. Christian pagbeyx doesn't know. Anyone with the diagnosis had personal examples or experiences that can offer some ideas if coping with these types of frustrations? My headaches are beyond anything. I am in bed for 2 days, literally. I have to call on friends and neighburs for help. I need to be me. And this is not. Ideas? Change in thought/vegavioyr u should consider trying? I'm lost.
I'm determined. I did not gave thus disease triggered from the stress if protecting my kds , to have the same disease take me away from them and square them in the middle of a lions den unprotected. Not in my watch...
So help. Please. Anyone. Ideas. Thoygjts. Experiences. Trials and errors. Coping. Where to seek better or more info, and specialists, doctors that can and would but don't unless... Referrals, ideas, experts.
Mohammad MAHMUDUR RAHMAN
May Allah bless you. Thx for share your history
Terry
I was diagnosed April fools day 2021. I had been sick for 9 months. No one could tell me what was wrong until my dr tested me and said my inflammation was very high. She sent me to a ENT dr that sent me to a Rheumatologist who with a colleague knew what I had. My question is do you ever feel normal again? I do feel better than before but with all the drugs I don’t feel like myself. I was scared at first because I didn’t have many answers.
Now , I just want know if this gets better in time or is this the way it is now!
Althea
Hi Sandra and all the others that shared.
My name is Althea and I didn't know why I was so ill but also got diagnosed with GPA (Wegener's) a few months back (57 years old) and feel miserable some days and other days okay.
But I am thankful that the Lord has got us all together to support each other now. I also uses methotrexate and prednisone and I am praying for remission.
Thank you all
Shane Graves
I was admitted in the hospital on my birthday May 8th of 2020! I had some mild symptoms in January of 2020 had a small chest cold or so I thought! I was coughing up small amounts of blood so my GP put me on Zithromax and it seemed to get rid of the symptoms! At this point in time I was (or at least I thought) I was in the best shape of my life, jogging 5 miles every other day and eating a veggie, fish water diet to a T! April 2020 I started with really bad swollen ankles and could barely walk from our kitchen to our bedroom! My inner heels got bruises if I stood to long! Saw my Gp got labs done and he showed my CRP was crazy high so he referred me to a rheumatologist and all he could say was start taking 20 mg of predisone! I was up all night with fast heartbeat(135 all night)!so the next day I called him and he said to get off! By this time it was the beginning of May and I started having new symptoms besides the swelling I was having mild grade fever(99.7) daily like clockwork! Friday May 8th rolled around and I knew in my heart of hearts that something was not right!! That day (My 44th birthday) I already made the decision to go to the ER! My wife was reluctant because of my low grade fever, but my body was screaming at me “ Your not well”! So I go in get admitted due to a chest X-ray that showed I had sever pneumonia! All the while I had a gnarly sore in the back of my throat that did not allow me to eat for the 8 day stay I was there! I lost close to 30 pounds in those 8 days! On the 5th day in the hospital I woke up choking at 3:00 am halked a bloody luge called the nurse told her then passed out! That night they found out I was peeing blood and protein so not only was my lungs bleeding but my kidneys were failing! On Thursday May 14th I was diagnosed with wegners(GPA) and that day my “new norm” came to play! 150 mg of cytoxin a day and 60 Mg of predisone per day! I cried everyday for a month praying”God if you take me home please be with my family”! Now it July 2021 and I give all the praise to Jesus who’s been with me every step of this scary yet blessed road! I’m on 2,000 mg a day of cellcept and down to 5 mg per day of prednisone! I’m alive I love my family hard daily and am living now! Fishing on the ocean this week to catch some ocean kings(salmon) I look at myself in the mirror daily and have a hard time adjusting this new overweight self is the new norm! But I’m alive and praise God for everyday, is it hard hell yes but I have to believe only God knows the amount of days I’m supposed to be here not this disease! Each day is a blessing!! Shane Graves
Stacy Elswick
Thank you i found out that I had it 2017 my Norse come off while the top of my Norse and my throat is miss up but I live in Charleston wv I can’t find a doc to take care off me get and My stuff is get worse the doc that find out that I had it is 8 hours away but I need on medication so if anyone can help please let me know and thanks for the help
Natalie Miller
I was just diagnosed the beginning of July 2022. I have list most of my hearing. As well as the ability to eat dry foods. Everything in my head was inflamed. Will I ever be able to hear again? Or just with hearing aids? Or something else? I’m overwhelmed. I have kids who are afraid for me. I looked up the diagnosis while my husband was driving me to the hospital and online it was a few weeks up to 8 years!! Really!??
Mukesh Pareek
Hi I am 26, My father he is serving in Indian Army and its been 34 years since he is serving Indian Army. Currently his age is 54.
He was diagnose with GPA in year 2012 all of sudden everything was changed. He was given lot of steroids I don't know what..!
Now currently he was coughing and get blood in his mucus then he went to hospital and they ask him to get admitted in hospital as soon as possible. Its been a week since he is admit. Now only I got to know that he is suffering from GPA because because he use to visit doctors alone and never told about this. All I was thinking it was some sort of Arthritis.
[email protected] +917229944887
Above given are my contact details if anyone have any latest information or experience regarding GPA then please help me, As I don't any Idea in this regard.
Thanks for writing Sandra, you are hope.
God bless you..!
Stephanie Miles
Hi I am 52 I was just diagnosed after 2.5 years of being misdiagnosed. Still I am not being treated for GPA because I cannot find a Rheumatologist to treatment me so my gastrointestinal, lung, vascular, infectious disease, orthopedic keep putting band aids on everything till I do and my symptoms are getting worse and I'm afraid. I am also afraid of what meds I should take when they do put me on something!
Michelle
Hello! I also, was diagnosed at a very young age. I looked healthy and was written off for so long and know one took me seriously until I was admitted to the ICU for coughing astronomical amounts of blood from my lungs. I was 21 and was studying history on a scholarship. Needless to say, I had to drop out of college and the trajectory of my life changed completely. I was in remission for 19 years and have now relapsed again. Living with the meds and the side effects is miserable. People always still tell me how healthy I look.....I want to scream at them well I don't feel healthy.