As a weggie – one of those people fated to live with Wegener’s granulomatosis (AKA GPA) for the rest of my life – I’ve had well-meaning people try to offer strategies and advice on how to deal with chronic illness. Yesterday, I came across this item posted on Facebook by a fellow weggie, Anne Wellings.
Spoon theory is something new to me. I understand it on some organic level, having experienced an illness that sometimes left me exhausted but not visibly sick, of being at an age where everyone else in my cohort can name an ache or pain for every one I experience, though theirs more likely than not aren’t signs of a body rejecting itself…. The “Chronic Illness BINGO” chart below covers a lot of the things others either said to me or implied in their effort to “deal” with my illness.
My all-time favorite, though, was by a co-worker, who sold organic vitamins for extra money. (“One-A-Day vitamins don’t break down in your system, so you just poop them out whole” is a paraphrase of one line she used.) Shortly after I returned to work in March 2004, after three months off for the fight of my life, for my life, then a few weeks to build up my strength, she told me I should stop taking the medications my doctor prescribed because they were poison, which is technically true of medicines — and, well, vitamins! Instead, I should take such-and-such vitamins because she, vitamin seller, read a study that characterized natural vitamins of the specific sort she sold as a panacea…for everything, including this disease I had that she’d never heard about before I came down with it.
I told her I could take her vitamins, a therapy not recognized by any credible WG specialists and die or continue with the “poison” prescribed by my doctor and live. Was she willing to take responsibility if I died on her vitamins? It shut her up.
She also tried to convince another co-worker with MS of the efficacy of her vitamins. The person with MS told her off, too.
Though I am in remission, and have been since May 2005, I remember well-meaning people trying to help me deal with something they couldn’t possibly grasp, a rare illness that has no cure, and, that used to be a sure death sentence. My own doctor, when he identified my illness and told me what I had, said I had Wegener’s granulomatosis, and would be dead within two years.
That was in December 2003. In December 2006, on the third anniversary of the “dead in two years” prognosis, I reminded him about what he said that cold day in 2003. “That’s the blunt kind of thing I’d say,” he said. And how! But I appreciated his candor at each stage of my treatment. He is a compassionate fellow under that hard veneer, something I came to realize.
What do you say to someone dealing with a chronic illness? That depends on the person. I personally have no issues with death. I kissed it on the lips in December 2003-January 2004, and it was cold. Just don’t try to out-guess my doctors unless you have credentials that establish you as a bonafide WG/GPA specialist.
Then I got better, achieved a new normal, but I am aware of the dangers I face. Keep your germy little children away from me when they are sick, for example…! And don’t visit me with a cold. I am susceptible to respiratory illnesses. Your cold that is over for you in a week becomes something I might fight over two months, sometimes through bed rest. I know to wash my hands, a lot!
Deare Doug, I was worried about your disappearance from the blogosphere. I did not know about your condition and will now add your name to my prayers.
Welcome back, dear friend!
Technology is wonderful…until it isn’t!
Reblogged this on Contrafactual and commented:
Reading this as I sit with the Mrs in the ER. Following “doctor’s orders” … “go to the ER”. I had hoped to avoid another trip this year.
I particularly liked the BINGO chart
It’s something we people with chronic health issues can make use of, for sure. It would have been especially helpful for me back in 2003. I’m glad you chose to reblog it because I know it will get considerably greater exposure through your blog than it ever would with mine.
Re: “I” in the previously reply (Hit the reply accidentally)
I thought that’s what happened! I just deleted it, and probably will delete this once you’ve read it. That’s one issue I have with WordPress: editing mistakes in comments is impossible! I am notorious for typos, thanks to some numbness in my fingers and poor typing skills.
Re: “better exposure on my blog” … I think you over-estimate the number of my followers. However I will allow that I have a widely diverse range of followers.
You are one of my most faithful followers and I am ever so appreciative of that.
You always have interesting posts in all your blogs, and one always can learn something of value or be entertained reading them. I enjoy your cat blogs especially, of course (since you have some very pretty cats!), but the ones on space, technology, and other sciences are well-written and/or include excellent videos that are a treat in their own ways.
… and they are as affectionate as they are cute!
Just listen and be a friend. Be there when help is needed and respect alone time needed and when time to rest is needed.
We all need people but people who are friends and just there because they like us no matter what.
Exactly! I have doctors to deal with the medical issues, and the rest just needs to be as you outline it! The point about rest is probably the hardest for healthy people to deal with. There comes a time (for me, and I have no doubt you!) when I physically need to stop moving, sit down or stretch out on bed to regain my strength. It isn’t as bad as it was when I still worked, mainly because Andy and Dougy, as cats, understand the concept of taking a nap! Ha! We can learn from our furry friends, eh?!
Best wishes to you, Tim, and dear Ali!
I must admit that I faced death a couple of times and was severely disappointed and angry when I opened my eyes and realized I was still alive. Living in progressive pain, deformity and disability is a sentence of torture and I have already lived it for 40 years so I embrace death with vigor. I would welcome release from this broken body. Yet, health problems is only one aspect of what I have had to endure throughout my life. The only reason I stay around is my faith knowing I was created for a purpose, which must be fulfilled or all I have gone through has been in vain. I do not see my life as a gift but as a duty that must be completed. Nevertheless, I am praying for early retirement! I also admit that I have battled depression at various times throughout life and I get extremely discouraged during flares of symptoms because not only do the rheumatoid arthritis symptoms flare but the vasculitis flares right along with it since they are intimately connected. It hard and becoming harder with each passing year. I feel ancient and my doc does tell my I have the insides of a person that is 190 years old and arthritic. She is always amazed that I am still mobile and not bed-ridden. I am stubborn and a high tolerance for pain. Yet, each day I must convince myself that I have something important to accomplish. As the cold weather moves in (very early this year) my RA is going crazy and there are several sores that I have been nursing for 6 months now with necrotic tissue. Chronic illness is a burden but it is made so much worse by clueless, ignorant people.
It is difficult, isn’t it? I try to be patient with people who think they have the answers to what I deal with, haven’t experienced anything like my experience, yet don’t know to shut up about their off-base theories.
I have a few issues because of WG, but the main problem I deal with is associated with herpes zoster, one of the joys of a compromised immune system: I had a severe case of shingles in 2007 that left me deaf in my right ear, scarred like a pirate (from ear to chin, with my mouth twisted at the corner), and in chronic if tolerable pain (mostly tolerable…!) that makes sleeping on my right side nearly a torture and every waking moment a small torture of jabbing pain at the corner of my nose to just a dull ache.
I used to take medication for it, but it used to be so bad I couldn’t drive a car unless I had a place to stop when a pain attack happened. (I needed to be able to stop the car and scream till the pain subsided! I was in so much pain early on that I demanded God or Satan cure me instantly of pain, and I’d follow the one that did the deed! Ha! But I was serious at the time!)
I understand how that pain wears one down, can bring on depression and despair. “Despair”. Another of those 19th Century businesses like “The Vapors”, but no joke when you experience it in conjunction with malaise, for example. I find it liberating to be able to talk with people who’ve experienced this sort of thing because they aren’t alarmed when I say things like I had no issue with dying, even to the point of welcoming the possibility (with anticipated joy, even!) of death. It does help one not to be so judgemental of others experiencing similar things, whether from the same causes or not. Nothing is a loss until there is no hope, and waking up in any condition each morning is cause for hope.
One way I dealt with the WG was to “share” my disease with the medical staff who tended to my needs. The nurses and many of the doctors hadn’t experienced a patient with the disease, so were inspired to go to the Internet to learn more about it, then come back to me with printed copies of the information they found (much appreciated!). I shared my experience with them, answered questions as a patient with this rare disease. It helped give me hope. Whether I survived or not, maybe my story would help others, I thought. In fact, my case was updated on the Internet by my doctors, and one told me there there were thousands of people following my progress worldwide. Whew! Couldn’t go and die with a following that big, eh?!
Faith was at the root of my hope and (probably) lack of fear about dying.
You are correct, it matters not what ailment causes the pain, pain is pain. It irritates me equally when a person acts as if a hangnail is going to be the end of them and then there is the person who tells me they are hurting and then follows it with, “Oh, but I am not hurting as bad as you are.” Both of these responses drive me crazy. My family and friends are good for the latter and I always tell them, “How do you know? Do you have a pain meter sticking out of your side? Your pain could be 100 times worse than mine!” Ugh.
I have a friend who has chronic shingles but nothing compared to the episode you endured. Nevertheless, shingles is an attack on the nerves and anything messing with a nerve is going to hurt like the devil. The shingles were likely a result of the WG given the severity of it.
When someone is in chronic pain, regardless of the level, he or she will do anything to make it stop. Anyone who says they have not thought actively about death when in this condition is either a liar or a masochist. It is amazing how much pain one body can produce and endure. I often ponder, how much pain will it take for the heart just to stop because it cannot handle one more stressor. Nope, you will not get any judgement from me for thoughts of embracing death. Plus, when you have a strong faith and know where you are going then death should not hold any fear. Afterall, one would be insane to want to stay here and endure torture rather than be in paradise. Yet, your experiences have had a significant impact upon the thousands in the professional and lay communities. You are fulfilling your purpose through the pain just as I am and that means we have won and Satan loses. The stronger we are, the more battles we win, the more he will try to make us crumble.
You are a man with a good and loving heart as is shown by your relationship with your funny little felines. You are tough as nails and have an incredible resolve as is evidenced by overcoming what would have killed most directly or caused them to take the bridge. You have maintained your faith through your journey into hell and that is no easy task as most blame God instead of the real culprit when hardship hits. You have won already. I know, most days you feel like anything other than a winner but you have and are continuing to win. Albeit with a battle worn body, you continue to fight. Cheers to you and I pray that the good days far outnumber the bad days!
You are correct about the nature of my body’s response to shingles or any infection of any nature, for that matter. Wegener’s granulomatosis makes me a prime target for other disease, and I tend to have versions of these diseases my doctors always seem to characterize as “the worst case of [insert disease name] I’ve encountered in [insert 10,20, 30 years, or alternate number of years] as a doctor”. I have to laugh when I hear that because it’s become cliche after so many repetitions! That’s why I am almost OCD-level about avoiding public places during flu season or washing my hands frequently, too. As I mentioned elsewhere, I don’t enjoy being around children with colds or other sick people who show up in public because their week of discomfort typically takes me a month, sometimes two do shake if I catch it.
Before I got my first cat, something I thought would be beneficial to me once I retired, I reviewed it with my doctor because of my concerns about cleanliness. He pointed out reasonable precautions (hand washing, care when dealing with cat waste, that sort of thing) were all I needed to follow, but the benefits of pet ownership were worth the extra care. And they are!
I don’t know that I am that tough. If I knew what I had to go through sometimes, I wouldn’t voluntarily go that way. Since we don’t have the option, I deal with things as they strike, then look back in amazement later when I survive in some form! The toughest part of debilitating illness for most people is accepting body changes that limit mobility, for example, or affect enjoyment of a favorite activity. I lost hearing in one ear, yet I have a CD collection that is close to 6000 CDs big, mostly collected between 1992 and 2007, before the hearing loss. I could feel defeated because I can’t hear in stereo anymore or I can learn new ways to listen that mimic stereo sound! (You place yourself in a room where there is a slight cathedral effect – sound decay – because the music returns to the ear directly from the CD player and bounced off more than one hard surface, and there is a subtle and enriched faux stereo sound!) I remember the joy I felt when I realized I could get that faux stereo effect because, clearly, with a CD collection that large I do love music!
Cheers to you, too! I do have mostly good days, and bad days are still mostly good. I am no Pollyanna, but surviving what I have, and every day is a blessing I might not have had. I know you appeciate that!
Over the years I have found that folks who develop chronic illnesses after being relatively healthy and living a lifestyle based on that health have the most difficulty dealing with the losses their illness brings.
I am “lucky” because I have never known a healthy day in my life so I mourn only what could have been instead of what was. However, I do have a hard time dealing with 80-90yr. olds who can move around better than I can.
I agree about the germ factor. When I was a child I caught every cold that came down the line and it always turned into pneumonia. I have always tried to avoid sick people but I was high school teacher for a while and I was constantly sick. ugh. However, now I can control whom I come into contact with and all my friends and family know well not to come around if they have so much as a head cold! As you stated, something minor for them turns major for us. Be well my friend and stay away from the sickies!
I was in good health until I turned 55. I don’t recall difficulty adjusting to the change in my abilities, probably because most of the things I did daily were computer-related. I mostly missed being able to garden at a level I did before I became ill.
Oh, God. What a GREAT post. “Dr. Oz says…” makes me want to scream. And the vitamin lady! I am hearing a lot of this stuff right now, too. I’m really glad you kissed death and said, “Goodbye! I have kitties to look after!” 😉 Here’s to many more years. Woof!
Thanks! I totally know what you mean about Dr. Oz! He may have credentials as a doctor, but he still is a shill for (i.e. is compensated by manufacturers of) various products. I bet you are hearing a lot of “advice”! The main thing is to read up on your condition and its treatment, have lots of questions for your doctors, expect straight answers back, and know that you are as important a member of the team working on your health issues as the medical professionals. How can they help you if they don’t know what your issues are?
The hardest part of treatment is dealing with the anxieties of family and friends. (Presuming you don’t have qualms of your own! That’s where being informed in all ways possible helped me.) I was as straight forward with them as my doctors were with me. Bad news wasn’t sugar-coated. People learned not to ask me the generic question, “How are you?” because they got the medical definition of how I was at that moment. Ha! (That stopped a lot of idle questions!)
Anyway, good luck and best wishes with your health issues. I love your blog! I think Maggie’s charming and know anyone whose love of a beautiful by maligned dog breed – specifically the lovely Maggie! – survives regardless of behavior issues along the road is strong enough to come through pretty much anything life throws in her path!
Thank you so much! I have got my lab work back and I am severely vitamin d deficient. So now I know why I have been having chronic fatigue along with everything else. Maggie has been watching over me all day. Very dutiful. I am going to pick up the prescription, and spend some time (not much) in a tanning booth. I really want to feel better! Woof!
That’s typical in people with chronic illness, I think. I used to have to get Vitamin B shots once a week during my treatment for that reason. It did help! [Good doggy, Maggie! You’ve paid back your family’s faith in your ability to become a good doggy through training and love with good behavior and lots of love back! your story has been an inspiration to me, and I know it helps to dispel the image of your breed being totally bad. A chihuahua treated like one of your kind by bad people would be a terror!] Best wishes for achieving that wellness. As a mother, it is especially hard not to be in top health! Moms have a tough enough job as it is.
(Proudly) I had my Lassie moment last night! I’ll blog about it later. And thank you so much! Woof!
I look forward to reading about it, Maggie! Good girl!
I love it when I hear that someone has told off one of those quacky vitamin hawkers. Hope the memory of it puts an occasional smile on your face.
That chart is very good, the ‘is it real?’ box……good grief. I have some empathy for where you are, patience is forced upon you who you have a chronic illness and compromised immune system, otherwise you’d go mad and start talking to cats.
I’m just joking about that last part! * smiles. Telling other people and sharing things like this helps those out there who think they’re alone. I bet the boys sometimes wish they could give you some medicine and chase you round the room rather than the other way round.
I think the oddest thing I feel about WG is I don’t feel depressed about it or mad because it limits me. That acceptance is a blessing in itself! I faced death in 2003-2004. It isn’t scary. It is welcome under some circumstances. Until the plasmapheresis treatments turned the tide for me, I would have welcomed death with no regrets or sadness: It would have been a blessing! Once I started to feel better, of course, I had a change of heart and was welcoming of whatever life brought me for however long I had it to live!
Yes, I understand more than you might guess. I too have been there, more than once, it’s interesting finding out how we react and knowing that sometimes, under some circumstances, it would be just fine to leave for good. I’m glad you’re still here, and able to enjoy life now. Every day with a smile in it (and furry folk of course) is a kind of blessing. 😊
Exactly! Reading your posts since subbing your blog, I picked up a survivor tone that of some circumstance that is bigger than most people experience. Talking about submitting to death is scary for many people, maybe most if they are honest with themselves! I came close enough, as noted, that it seemed a good idea, a comfortable way to end the coldness that permeated my body: I couldn’t keep warm or get warm no matter how many blankets I sweet talked the staff into letting me have.
When I read one of the symptoms of my disease is “malaise”, I thought to myself, “Great! I have a 19th Century condition on the order of The Vapors!” It appealed to my quirky sense of humor: I laughed to think of being knocked on my back with “malaise”, one hand drawn over my pale brow, palm up, me proclaiming (in a southern accent, of course) how I couldn’t attend the cotillion because my malaise was acting up…again…sigh!
Of course, malaise – a feeling of not being healthy, of being unwell – can be mental, but mine was a body malaise, one where I couldn’t shake the body sense of being unwell. (I wasn’t depressed at any time – too tired to be!)
Shrewd reading sir *smiles. And ‘malaise’…it does sound like it should go hand in hand with gout or some other historical affliction. I think these days people say ‘it’s probably all in your head’ instead of malaise, which is a fine way to receive a punch in the nose in my book hahaha.
Thanks! In it all, a sense of humor helped. What is more amusing than a hospital gown?! After a month and a half of hospitalization in three different hospitals, I got to the place where my sense of modesty was extinct. I had to relearn not to walk in the front room at home in my underwear when the drapes were open because there are laws about that! Ha! (Or should be!)
I feel especially sympathetic toward people dealing with lupus or chronic fatigue syndrome, as two diseases that defy easy diagnosis and seem to bring on lots of that self-righteousness you mention where people assume the illness those people have is laziness or mental. I didn’t have difficulties blending back in at work because of the nature of my work and a boss who made an effort to accommodate me till I was physically about to climb the stairs to my office and desk. (He set up a temporary office, with my computer and work, on the ground floor of the offices.) Other weggies on a support group website I used to be on wrote about bosses who didn’t work with them this way, and went as far as to find reasons to fire the weggie, which deprived them of health insurance and income at a time they were most vulnerable! I slowly switched from being a registered Republican to an independent voter with leftish leanings as a consequence of exposure to such things, including my “retirement” and the impact it had on my ability to be insured at a price and level that someone with a potentially fatal disease could afford in America before ACA.
Amen! You are right, most people provide harmless, albeit, very annoying advice and it can be easily ignored. However, anyone who advises against medical direction and treatment is stupid and dangerous. Yes, all the medications we put into our body are toxic and if you have a chronic disease then you may be taking some of the worst. The medications themselves eventually cause secondary ailments BUT when you are given a choice of quality vs. quantity then you must make the best decision for your life. Thankfully, I am not married and I live with my three dogs so all I have to worry about is myself so all health decisions are based on the idea of whether I can hack it or not. The Spoon Theory is great as a way for healthy people to try to understand what chronic suffers go through but you cannot truly understand until you are faced with it day in and day out. I also have found the theory to be beneficial to those newly diagnosed with a life changing chronic illness. The young woman who came up with it used it to help her friend try to understand and it has helped many. Kudos to her!
The thing that has always gotten me about any advice given is the underlying judgement the person offering it is silently delivering. Of course, there are those ignorant enough to come right out and offer the judgement upon you. I used to have a wicked temper and would annihilate those kinds of people while offering sarcastic comebacks to the rest. Being a Christian, I was exposed to an extra layer of judgement from those idiots who do not understand their scripture and allow fear to rule them. This last element was the hardest for me to deal with because I thought this group of people would be supportive. Some were but most allowed fear to rule them. In addition to the normal advice, I was heard, “perhaps you are not praying correctly, You must have sin in your life and that is why you are not being healed, blah blah, blah…”. Now, I have had rheumatoid arthritis since age 4 but being diagnosed in my 5th year of life. Since then, I have had several “annoying” secondary ailments pop up such as vasculitis. After a lifetime of hearing advice and judgement from others, I have concluded that people say stupid things out of fear. If they can find a cure, help aid, solution then they will not be so afflicted by a debilitating disease. Sometimes there are no answers, there are no cures, there is no magic pill that will make everything better and a hundred “faith” healings will not make a difference. Nope, sometimes life just sucks and you have to accept your circumstances and make the most of the life you have been given. One positive result of chronic suffering is that you learn to appreciate every moment of happiness and joy given to you. You also learn what is important and what is just a waste of time. You learn how strong you really are and you learn who your friends are because they know when to keep their mouths shut and their ears open.
Soon to be 44, I am at the point in my “treatment” where I spend my 15mins with my doctor consoling her for her inability to help me further. I educate myself thoroughly on all my ailments, as all should do, so I know the game and I know my options given the limited medical insurance I have. However, even if I had the best insurance available they would likely deny payment on the newest and best meds out there given my long history of the disease and the minimal efficacy the drug would have and the enormous cost of the medicine. So, I make the most of each day when I can. Today, I wasn’t even going to turn on the computer because I find myself a bit depressed and enduring a flare of symptoms so I have spent the greater portion of the day in my bed. I must tell you, your post was the light in my day. It is truly comforting to know others understand, for feeling alone in your misery is very disheartening. Thanks! Blessings upon you.
You said it all! Which form of vasculitis do you have? Mine is a form of it, of course.
Its simply termed rheumatoid vasculitis and effects all blood vessels. It shows itself on the skin causing sores and eventual necrosis. However, you know that is just a minor consequence of this type of disease. I pray yours stays in remission. Blessings upon you good sir! Enjoy your little furballs. My pups provide me great comfort and reason to get up and move.
There is some of that for weggies, too, though there are over a 100 identified symptoms, making it one of those nasty-to-diagnose diseases that autoimmune diseases tend to be. Thanks! Andy and Dougy bring lots of fun and joy into this home, and I can forgive a lot of their nautiness for that reason! (Of course, forgiving every little thing they do perpetuates the bad behavior, but…! They are soooo cute when they defy me!
Ok, so I have to give my cure. Take two cats and call me in the morning. If your not feeling better, increase number of cats until desired state of (in)sanity is attained. Do not exceed 18. 🙂
Sadly I have a friend who is afflicted by the same illness…not yours! The selling of “cure all” vitamins. I’m planning an intervention. Want to sit in?
An intervention is a good idea. Though such people are harmless enough, I guess, when dealing with ordinary healthy folks, they can cause serious setbacks in people with my disease, cancer, MS, and other diseases that require real medical doctors to be involved, not nutrition amateurs who think reading an article in a health magazine or literature put out by the vitamin company trying to recruit sellers somehow qualifies them to risk other peoples’ lives or health (at minimum) with their nostrums.
As far as the cats, my Seattle sister (and cat person, Mom of Moilly the tuxedo cat, possibly Sox the tuxedo cat if he returns home some day) just e-mailed me an item on the health benefits of cat purrs. Of course, we cat people know about that! I’ll probably repost it. Maybe not. Have to look at it for signs of copyright issues if I do.
Yes, sadly my friend was a nice person until the “vitamin evangelists” got him.
He was over visiting one time when I came home from shooting a horse event. “You need vitamins, your tired, run down!!!”
I knew he liked horses and invited him to assist me the next day. After we spend 10 hours in 40 Celsius weather I asked why the vitamins were not helping him? (I must say I did enjoy that) 😉
Cats rule! A purr a day…
Woohoo! Ten hours in 40°C would destroy me, even before I came down with WG. I think I am cursed with the heat resistance capabilities of the mostly Scottish part of my genetic heritage, i.e. give me overcast, cool, drizzly days anytime! My vitamin pusher would gamefully come up with a rationale for why she collapsed in those conditions, probably somehow related to not taking the right combination of vitamins.
I’m kind of used to it and don’t mind the heat. My V. pusher was pretty quiet throughout the evening. 😉
There is a lot to that. When I worked in the hose factory, I tried to do as much in the air conditioned office as I could. If I had work on the hot production floor, I tried to spend as much time as possible in the heat. What especially hurt me was going back and forth between iceberg and furnace. I never became fully acclimated to one or the other, and those in the air conditioned offices tended to keep the offices cold enough t9o store slabs of beef. I exaggerate a little…!
One of my careers was as a golf professional. I got very used to extreme heat for extended periods of time. 🙂
That would do it! I’d have to get there at dawn’s early light or die.