I’m a 46 year old mom to 3 kids and grandma to one, a military brat, a music lover, a widow, and an involuntarily retired attorney who got smacked with the most sarcastic and ridiculous disease on earth, completely changing the future I had worked so hard for, and the plans I had for myself and my family. I have a 26 year old stepdaughter who has my 8 year old granddaughter, along with my 21 year old daughter and the baby, my 12 year old, who I’m thankful has grown up just in the right times that my illness doesn’t put her in danger.
My condition, Churg Strauss Syndrome (CSS), or Eosinophilic Granulomatosis with Polyangitis (EGPA), as it is currently called, is sarcastic and ironic, just like I am. It is an autoimmune vasculitis that causes inflammation, and one of the primary symptoms is an intolerance to nonsteroidal anti-inflammatory drugs (NSAID’s). And that irony and sarcasm just carries on throughout the entire journey. One thing it is not: boring.
It is diagnosed in only one to two out of every million people, and was featured on the fifth episode of House MD, if that tells you anything about how rare it is. It is most evident for me in the way it made my asthma go from completely controlled to uncontrolled, no matter what we do.
I’m currently on a low dose of chemo and a biologic in addition to prednisone, and trying to wean off.
My previous life was being a family law attorney. I try to assuage my guilt about my daughter not seeing me as a professional working woman by volunteering as much as I can.
People always tell me I should write more, so here we are. Maybe my escapades can make somebody else laugh, or make someone feel less alone if they are dealing with similar circumstances. If nothing else, it will be something for my kids to be able to read later in life to remember who I was.
Until then, I plan to live the hell out of every single day I am given. And laugh as much as I can, when it won’t cause an asthma/coughing fit. I truly believe laughter is the best medicine. (When it doesn’t cause a deadly asthma attack.)
I couldn’t find the picture of one of my infusions, but this seemed appropriate for May the 4th, as I was on my way to get an infusion and quite irritated, but grateful I had the best doctors who communicated via text, came out from seeing patients just to show me their notes to prove that the infusion department was not correct, and making sure I got my infusions.
Doctors like this are hard to find and I deal with my horrific insurance company for HOURS every week for the sole reason that I choose my insurance based on NOT losing the doctors who have saved my life. They listen, they want to learn and teach, they appreciate questions instead of getting annoyed… one of them even decided to admit me, but first asked me, “I know you have two girls. Do you have someone who can care for them?” I was STUNNED. He is the medical director of Advent Health’s cancer and oncology unit (Dr. Carlos Alemany), and he remembered I had two minor children, and actually cared whether I COULD stay long enough to get answers. (The bonus side note here is he went to the same college as my father for undergrad in PR! So nice to see one of our own so gifted at his work, while maintaining incredible compassion for his patients!)
Because he was who he was, he flat out told me: “I know what you have, YOU know what you have, but your rheumatologist wants a biopsy, so we are going to keep you here until we get one.” Others doctors tried to release me and I refused until it came from his mouth, and each time I said I wanted to hear directly from him or his colleagues, I was correct about what he wanted. I thank God for these doctors every day, because I was on death’s doorstep when I found them.
I saw him because he was a hematologist, but he had done the two fellowships at the Cleveland Clinic, where they study my condition, and he was one of the only doctors who had any experience or extensive knowledge about it. I saw several doctors who pretended to know, and I knew by asking only a couple of questions that they were not being sincere, and I can’t trust my life to a doctor like that. Others simply refused to see me because they weren’t sure how to treat me. I appreciated their honesty at least.
Incidentally, the other one I trusted most at that time, God bless him wherever he moved to, did NOT have any experience with it, but he did NOT lie, he listened, he learned a little bit from me and then hit the books until he knew more than I did. I trusted him with my life as a well.
He knew me so well, that when he was “off” and the answering service said not to contact him, I asked that they just let him know I was admitted and he didn’t need to call back. Would you believe that man was standing next to my bed in less than an hour? He was actually working another hospital and said he knew if I let them admit me, I must have thought I was dying, because I do NOT trust hospitals.
He left the practice and I cried for three days. It’s amazing how your doctors feel like family when your life depends on them. They see you at your absolute worst, and they reassure you when you start thinking you’re crazy, or encourage you when they see you dipping into medical overload/depression. The only thing that helped with that was being moved up to the head of pulmonology at Advent Health Hospital nearest to me (Dr. Daniel T. Layish). He is now, hands down, the most AMAZING doctor I have ever had! He has been at his office as late as 1900 taking his time answering questions, and then apologized to ME for the wait, when I would have camped in a tent to see him if I had to! (Dr. Daniel T. Layish) I could not recommend these doctors enough! Even my 12 year old knows which is which! Another who is both gifted and compassionate beyond belief!
So, after a particularly ridiculous day of struggling with a department that had to be set straight by my medical heroes, imagine my surprise when I was exhausted and over it all, and the elevator doors opened up to this on my way up! Totally changed my mood for that day! Grateful to the nurse who was kind enough to take our picture.
If you read day 2, you already know I have been poked and prodded since I was old enough to remember. I still remember allergy testing with a bunch of needles when I was less than 10 years old. Nobody ever believes me that this stuff doesn’t bother me. Usually I watch. I had to hunt for a doctor who would let me see my daughter being born at least during part of my cesarean delivery, because I was still upset about being put out during my first one.
One day I was at the hospital and a doctor came in to see me in the morning. She said she had reviewed my sonogram. I can’t even remember what the sonogram was of. I said she was mistaken and that I had not yet had a sonogram. She went back to check. I was certain. She came back and again said that I had had a sonogram and she reviewed it.
If you don’t know anything about staying in hospitals, you don’t get very much sleep. They wake you up every half hour or so to check vitals, take blood, or who knows what. It’s also an environment that is not controlled by one person, such as when you’re at a doctors office. It’s many different people, changing shifts frequently. No matter how good they are, things get messed. People forget to write something down. And when you think about what doctors are doing, I will give them a pass on forgetting to write something down when they might be saving someone’s life down the hall.
This is one of the reasons I have never left family members in hospitals alone if I could help it. It’s not as much to supervise the staff as it is to be a second set of ears when people are in the room and the patient may not be able to soak all the information up, and to help out so the staff doesn’t have to stop caring for patients if I can help mine out myself. I would imagine it probably also makes it easier for patient to ask a family member for some thing than to ask a busy nurse they have to call with the red button.
Guess what? I was wrong about the sonogram. I would probably have kept insisting, until I looked at my hand and asked why there was a piece of gauze taped to it. When we took it off, this is what was underneath. Apparently, they had drawn blood in the middle of the night as well as doing a complete sonogram, without my ever having woken up. That scared the living crap out of me.
Everybody has heard the stories of things getting mixed up and surgeries being performed on the wrong people or the wrong part of the body. I remember being in preop once and hearing somebody in the room next to me saying good morning to Mr. (my last name). He asked how he was doing today. I called out from my side of the curtain and said, “I don’t know how he’s doing, but I know my name is (my last name), so I’m betting his isn’t.“ (Oops, wrong file! 😳)
I do not like being put under. At some point you will hear the story of when I escaped preop before they could give me a sedative. I don’t like not knowing what’s going to happen. And I certainly don’t like not knowing that something did. Nobody told me they were going to do it overnight. The fact that somebody could stick a needle in me, and roll me into whatever position was necessary to do an entire sonogram, without my waking up… and one that was able to leave this kind of bruise, was scary.
But it happened. I believe this is the stay where we were trying to figure out why I was falling, and losing words and my train of thought while speaking. Actually, it would’ve been my second stay trying to figure out the same thing. We’re still not sure. But we got further in that visit then the first one were two different doctors told me two different reasons, and then a third one told me it would be impossible for it to be either of those and they didn’t know why it was happening.
I’m still trying to get that answer. My neurologist has now sent me back to have another sleep study, even though my pulmonologist doesn’t understand why, since I’ve had one before and we know that’s not the problem. Sometimes that’s your only choice. I have to go through whatever steps are necessary until this doctor catches up with the rest of them and stops looking for answers where we have already looked. As somebody recently told me, as annoying as these things can be, at least I’m still on the right side of the grass today. And thank God for that.
Already behind. Day 2 of Vasculitis Awareness Month. This is my daughter and a family friend visiting me at the hospital my last stay.
For those who don’t know, my first husband passed when my other daughters were kids. My biggest fears are raising another kid without a dad, or leaving my kids without a mom. Every single night in the hospital, I think, “Wherever my kids are now, without me, this is what their life will be like when I’m gone.” I’ve been praying just to make it to this youngest one graduating high school, and we are only five years away!
But those nights are never easy. Planning for when you’re gone is never easy, even when you’re not sick, or terminal, like my late husband and a friend I have now. But it’s something we should all do. It’s just harder when your mortality is so IN YOUR FACE.
I’ve been sick since I was a kid, so I’m completely used to the medical environment. That gloves she’s wearing? Every single time somebody is in the hospital, we blow up a glove and make a face out of it with a mohawk. The thumb is the nose. My dad started this when I was a kid. I didn’t have vasculitis as a kid, that I’m aware of Karen but I have always suffered with severe allergies and asthma and spent my fair share of time at the Kinder Clinic in Germany and traveling to Philadelphia’s Children’s Hospital from New Jersey. I’m used to getting poked and prodded. Remember that for my next post!
I still remember taking pictures of my late husband. Pictures like this are hard. They are bitter sweet. I adore them, but they are also reminders that one day they could just be memories. My late husband had the misfortune and the luxury of knowing what was going to happen. I still struggle with not knowing whether that’s better or worse than a condition that can take you out at any moment without warning. I really don’t think there is a better or worse. They all suck.
So in the meantime, we blow up balloons out of gloves and laugh as often as possible, and when laughing doesn’t trigger my asthma. (Rest assured I delivered home supplies of nitrile gloves to doctors I knew when they were in short supply. Discuss just before Covid. Isolating actually kept me fairly healthy and out of the hospital for an entire year.)
We do the best we can and ignore the people who don’t understand when we have to ration our energy. That’s OK. They don’t have to understand. But it means a lot when people do. Thank you to my friend who took time out of her schedule to bring my kid to see me. It meant more than she could ever know.
It’s vasculitis awareness month. I don’t have the time and the energy to do live videos like some of these other heroes do. So I decided I’m going to share pictures of my journey. For awareness, and for those of you who like to pretend sick people are not sick if they don’t look sick every time you see them. I will share a different picture every day.
If you don’t already know, vasculitis is already a rare disease. The one I have is even more rare, and was formerly known as Churg Strauss syndrome. It is now known as EGPA, which stands for eosinophilic granulomatosis with polyangitis. (How the hell did Siri get all of that right, but she can’t tell the difference between “our“ and “are” or “except and accept”!?) EGPA is diagnosed in 1 to 2 people out of every million and was featured on the fifth episode of House MD as the first working diagnosis if that tells you anything about how rare and confusing it is, to both patients and doctors. I have seen the deer in the headlights look. I am an attorney. I am trained to recognize that. I have also seen complete astonishing looks from doctors who listened and wanted to learn. I have also had the best doctors bring in students so they could meet somebody with my condition because they never had. Those are my heroes.
The picture below seemed the appropriate one to start with because it was the day I was diagnosed (again) in Tampa. Yes, it can affect any organ including your eyes. I made the appointment on one of the last days of my 10 day hospital stay, and then I waited five months for my appointment with one of the specialist listed on the specific vasculitis page (I was diagnosed in 2015 by my hematologist, who had to fellowships at the Cleveland clinic in Ohio and first-hand experience with my condition, adding that I was a “textbook case,” and then again in 2016 because my first rheumatologist didn’t want to accept the diagnosis.
By that time, I had dealt with so many doctors that didn’t understand or were afraid to diagnose or treat me, and they had just about convinced me I was just crazy. I was floored when I walked out and told my dad I officially had it and was starting chemo. (A lower dose by a long shot compared to cancer patients. But still not pleasant.)
You might want to just mute me for the next 30 days if you don’t want to see pictures like this one. But I’m putting it out there for other people who may still be struggling for a diagnosis, being told they are crazy, being diagnosed and then undiagnosed, having doctors tell you you can’t have something because it’s rare, as if “rare” means “nonexistent,” and who have lost family and friends who can’t process or handle you being sick, so they abandon you, minimize everything, accuse you of making yourself sick or wanting to be sick, and even being a drug addict, because they don’t get it. (Eventually, you have to cut ties with people like that no matter how important they once were to you, if you want any chance of preserving your mental health.)
Getting extremely ill is the quickest way to find out who your real tribe is. If anybody else out there is dealing with the same things, it is isolating. And it shouldn’t be. I still wonder what it was like for my late husband to struggle with cancer before Internet support groups were available. So for the next daughters, for anybody who just wants to know that somebody understands, and even for those who tried to steal my meds, this is for you.
This is an excellent blog post about something I hadn’t put much thought into, having had many urinary tract issues as a child and being used to being exposed. But it hit home when I read and thought about it.
There is a lot to be said about perceptions and it is incredible the difference when you’ve had the opportunity and misfortune to sit on the opposite side of the desk than you’re accustomed to.
Going from attorney to client, doctor to patient, or even from one profession to another, where you are used to being spoken to, seen and treated with a level of respect, and suddenly find yourself at the mercy of someone else now filling those shoes.
I always tried to go in asking clients what they knew, so I could figure out the best way to explain something. When you’re used to understanding and explaining difficult concepts for a living, and suddenly you know everything you’re being told is being dumbed down, it is infuriating!
I’ve often said the higher you climb, the harder you fall. Nobody ever wanted to be a patient when they grew up. The doctors and medical staff who remember this do very well, and those who don’t could learn a lot from them.
I think every professional should have to spend a week on the other side of his/her respective desk. Just for some perspective and understanding.
Please read the following post, which really explains this idea perfectly.
Recently, I had to disrobe completely for a scan. I was already wearing a hospital gown that I’d been given after I tried to stay in my own clothes …
As this weekend has approached, I have watched the 2021 Valentine’s Day challenge. I get it. Rather than going out and risking people’s lives, people are sharing pictures of past “dates” and “events.” And with this holiday, we come full circle into a year of Covid.
However, I wear several different hats. While I am divorced, I am also a previously widowed wife and mom to one of my late husband’s kids, one of our own kids, and one more with my ex-husband. Losing someone at a premature age is not the same as a divorce.
While I see one set of questions being asked on my main social media page, I see a different side of questions being asked in a sub group of women who lost a spouse at a young age. “When did you lose them?” “How long WERE you together?” Some of them have been there as long as I have. 20 years is a long time. But as anyone who has lost a spouse knows, this kind of grief is never completely over. The love never ended. Life did. It’s so different.
I scrolled through some of the posts. There are others who are veterans, like I am. There are some who are halfway as far as I’ve gotten. And there are those who lost somebody yesterday, last week, last month, or last year. Trust me, most of the first three years, at least, remain a blur for the rest of your life.
That’s when I realized something. One of the hats I wear is being a professional patient with a chronic illness and a looming knowledge that I could follow in his footsteps in a flash due to my own medical condition. I’ve lost a friend who has the same condition, as rare as it is. I’ve had friends come close. I’ve helped a friend grieve somebody they lost to Covid. Now I’m trying to support her as she has become a long hauler, sick longer than two months now. And I know people who have lost several family members.
I’ve had to learn how to come to terms with something called disenfranchised grief. losing people you have gotten to know very well, but mostly online, so that you feel like you aren’t part of their real life, and aren’t entitled to grieve. I’ve gotten used to that. Although I have to say, I wasn’t expecting the last one. And it’s different losing them to Covid with a vaccine on the way.
The thing I noticed suddenly tonight is that while I am used to losing members of my medical support groups, I failed to notice that my support group for people who were widowed at a young age has been growing at an alarming rate. It seems like the obvious, but it’s just not something I noticed. Until now.
So if you are posting the Valentine’s Day challenge, by all means, do it! Milk every second you can out of your time with the people you love most. Nobody understand that better than we do.
But also take a second, if you don’t mind, and say a prayer for the many people who are spending this weekend alone because their everything, their person, their reason for breathing… wasn’t one of the lucky ones to survive this last year.
Maybe say another one for those who are waiting alone at home, hoping NOT to get a call about a last video with their partner.
And maybe one more for everybody who has lost a child, a parent, a grandparent, a sibling, aunt, uncle, cousin, niece, nephew, a close friend, or other loved ones.
And maybe one for the kids who can’t go back to school without endangering their own parent, and those who have to go back to school, and may have to live feeling guilty for tragic results.
And maybe one more for everybody who has lost a colleague and thought it could have been them.
For those who never got to say goodbye because their parents or grandparents were in a nursing home and didn’t survive.
For all of the people working, whether you are a front line medical worker or mopping the floors in the schools. Whether you are a police officer who has fought the virus, violence and hatred, or a person who is high risk because of race and being disparately impacted, or socioeconomic status.
For those who have been vaccinated and are praying that it works, and for those who are desperately waiting for their turn to get it, and for those who are choosing not to because they are afraid of the risk of the vaccine than the virus.
Whether you are a Republican or a Democrat or an independent or a libertarian, or just fed up with what we have been through politically, especially in the United States, as if a pandemic were not enough.
Just say a little prayer for people struggling through this weekend. I am grateful for the fun day and week I’ve had with my kids. But not everyone was lucky enough to have kids. Some are homeless without their partner in a world where jobs are scarce and crashing with a friend is a much bigger ask than in previous years.
Then… ENJOY THE HOLIDAY! Every minute of it. Even if you can’t go out or do something that has been a tradition. Nobody is guaranteed tomorrow. If the last year taught us anything, it’s that.
Make today count. Make every day count. Before you run out of days to count. You aren’t just doing stuff. You are making memories. Memories that will carry you if you find yourself walking a path nobody should ever have to walk. Keep making them, and then make more! Make them every day until you run out of days, even if you make it to 100 years old together. Never stop making them. Because those memories… the memories you’re making… they are everything.
I have a support group for the disease I have. It’s online. I have been a part of in person support groups. For example, when I lost my first husband to cancer and I attended the parent support group while our six-year-old attended the children’s support group. I can’t say enough about how grateful I am for what they did for our family at the time.
Fast forward 20 years and the world is a completely different place. Even pretending it’s not 2020, even as of last year, I had access to not only an online support group for my disease, but support groups for different areas such as people taking specific medications, or people with certain specific presentations of the disease. Even for people that have cancer in addition to the disease.
The value of these support groups is probably not quite appreciated by most of the people who have them. At least not in the way I do. You see, 20 years ago I lost my first husband to metastatic melanoma skin cancer that spread to his lungs and brain and took his life at the age of 28, with a 20-month-old baby and a six-year-old daughter left behind.
We had America online dial-up Internet. Most people today don’t even know what that means. It means we had to listen to a dial tone, a phone number being dialed one digit at a time, and A lot of very weird sounds every single time you logged on, and several seconds or minutes between pages. Complicated pages could take several minutes to load. I remember dancing baby that took about an hour.
I did happen to find an email support group for stepparenting, and it was the first I ever joined. But I was more inclined to use the Internet, which was new, than Josh was. He also never went to an in person support group. So, in my mind, he was alone. And you have no idea how often I think about that. I try to imagine what it would be like if I didn’t have anyone to text, message online, ask questions to in a group, or even search archives and pages for stories similar to mine, so I didn’t feel so alone.
It breaks my heart, and reminds me how lucky I am to have online support groups today. Recently, we lost one of our brightest members (ironically within hours of the 20 year anniversary of my late husband, so close that I had a candle lit for both of them at the same time). He was intelligent, well read, an incredible researcher, had medical expertise, had cancer in addition to my disease, and was one of those people who was always there for anyone who needed him, whether he knew them or not. I was the beneficiary of that help when I was in the hospital for 10 days and started to lose my mind. He was on the phone with me almost immediately and already had the phone numbers of specialists in my zip code.
The support group, which the family knew was a big part of his life, was invited to attend the funeral via video using zoom. I’m not sure we would have even had this option, were it not for the virus. But then, if it wasn’t for the virus, maybe the funeral wouldn’t have been this soon.
Nevertheless, the connection so many of us feel two people and support groups is stronger than some of the connections we have in real life. Behind a computer screen, we feel safe enough to share more, feel more, cry more, scream more, stand up and clap and dance in agreement more, and basically we are more free to be our authentic selves, when doing so in person may not be so easy. So there are things we share with online friends that we would never share with a person who lives in our lives.
I did learn that there is a word for the grief that goes with someone you knew only virtually, or in some way other than being physically present in your life in some way: disenfranchised grief. I’ve written about it before, but if you don’t know what this means, it’s worth looking up.
Because of social media, because of the Internet, we have something my late spouse never had. A community of support. Whether it’s emotional support, sharing information about different treatments, side effects, and experiences, just venting once in a while, or even sharing a funny meme or inspiring quote, there is always someone there. At almost any hour, somebody is awake and will get your message. And even a little hug emoji without words may be enough to make you feel less alone and how my late husband must have felt without that kind of support.
One of the most traumatic memories for me is when he asked me if I would allow them to cut into my brain if I were him. I told him that’s not a question I can answer for him. I would support either decision. And I made sure he knew that, and that he could talk to me about it. But I couldn’t make that decision for him by telling him what I would do. Nor did I know what I would do. I can’t help but think now that this is the kind of question he could have discussed with an online support group that had been in his shoes and could identify with the question. Someone who felt qualified to give him a better response than what I could.
So I am grateful. So very grateful that while it was too late for him, I have been able to benefit from the support of online friends and support groups, and I never feel completely alone. My world is so much larger, and even my perception is changed when I get to add global perspectives by learning how other countries use different medical systems. I do still wish I could go back in time and give that gift to my late husband. But I’ll take what I can get.
To my Internet friends and support group friends, thank you so much for your support, and for being there anytime you happen. In a life where my condition could have meant almost complete solitude, I was given the gift of you. And I will never stop being grateful for you.
Your kid will change costume ideas at least two times one year.
You won’t be able to find the costume in their size and you’ll have to go on a hunt at least one year.
You’ll run out of candy for TOT’ers one year.
Your kid will pick the same costume as a hundred other people one year and you’ll try to accessorize your Elsa to set her apart one year.
You’ll get crappy candy one year.
Your kid will refuse to keep on the mask, or the hat, or the wig, for a costume one year and they’ll look like they’re from a small town in Alabama instead of being Luigi in Nintendo overalls, or a sweaty pineapple instead of Princess Belle. You will try again other years, thinking this year they will keep their promise to wear it for at least 3 houses.
By the time you have 3 kids, you suddenly reocgnize the pro moms (and dads) who pick costumes that are recognizable once they are put on, without accessories being required, but which can be used if they want.
You will lose that one accessory they really liked and would have worn, when you take pictures for an event before Halloween and they’ll be mad and not want to wear the costume without it.
If you love dressing up, you’ll get a kid who dislikes it and is over it by age 8. If you hate dressing up, you’ll get a kid who wants to, and insists you do, too.
We won’t discuss how Halloween costume sizing is configured. But it’s extra fun when you’re either a tiny grown up and it’s all too big, or you’re “super sized” and there are only 3 costumes in existence that really work for you if you don’t make your own.
Your kids will be upset when you call time on TOT’ing some years, and other years they will be finished before you are, and you’ll be baffled.
You will teach kids about the 10% parent tax off the top of all Halloween candy, and be upset that your favorite one isn’t there. (The 5% you eat while “holding” their bag for them is NOT included in the parent tax. This is an additional deduction.)
Make up will be smeared immediately. If not smeared, the wearer will be itchy all over their face and will keep trying to just “poke” the spot with a fingernail without messing it up. (It won’t work.) Your kid will sweat or cry if the make up even makes it out of the door, and everyone looks the same by the night’s end: a distorted version of the Joker from Batman.
Your kid will say something embarrassing to your neighbors. (This can be avoided by trick-or-treating at a grandparents house, or another area where you don’t live and it looks like a place that would have good candy.)
You will confuse your Elsa with someone else’s and scold the wrong kid at least once for not saying thank you and be mortified.
One year you will think you just drive your kids crazy with your holiday antics and you’ll decide not to do something, only to have them ask why you aren’t doing it, and finally find out that despite the feigned embarrassment of you, they actually liked your holiday enthusiasm!
Your pumpkin won’t last until Halloween one year because you live in Florida and carved it more than 24 hours in advance.
You will make at least one trip to the ER because someone tried to slice off their finger carving pumpkins.
If you live in Florida, you will give in, eventually, to the theme park haunted houses, and pay a ridiculous amount of money for an experience that rarely comes with much candy, and that your kid will harass you to go to, insisting they can handle it, and you’ll have to carry them out before the end.
The reward for all of this will be a big pile of sugar that will make your kids hyperactive, ruin their teeth, and cause them to leave candy wrappers everywhere until you throw the rest away a few days after Halloween. (The trash can you will use is the office. You can’t prove it’s Halloween candy in the law firm bowl.)
One year there will be a pandemic and most kids will have to forego traditional activities in favor of quarantine holiday activity ideas.
You may be longing for the days your children are old enough that you don’t have to participate in this craziness anymore.
Until those days come, for one reason or another.
Then you’ll miss it. All of it.
So slow down. Take it all in. Every tantrum. Every mistake. Every half of a costume. Take pictures. Because believe it or not, you’ll miss it. And when you’re no longer here to miss it, they will miss it, and eventually, they will pass many traditions on to their own kiddos, or any kids they care about. (Including fur baby traditions.)
In part one, I spoke about the medical experiences that have led to clinical PTSD and anxiety about medical appointment, especially when meeting new doctors. I probably expressed how if it all possible, I always take a second adult with me to medical appointments because there will always be more than one of them, but it’s so easy for them to say you hurt something wrong unless you have a witness present. But this time I expressed that I met a new doctor who gave me what I described as as a new term: a medigasm.
Even as I finally finish the last of the labs on the last possible day I can do them before my appointment, after putting them off since March because of fear of going to a lab among the virus, I at least am able to take a little bit of comfort in knowing this is my new doctor, and now I can see him virtually. Finally, a rheumatologist is on my case. With a neurologist. It’s like medical Christmas! Now prayers that nothing happens to the insurance and all of these doctors remain on the same or another plan together. I’m starting to just have anxiety about losing doctors now.
Below are all of things he said that, each on its own was shocking enough to rock my world, but together, left me speechless and wondering if I was about to wake up from a dream. I felt as if someone had told him all the right things to say to make me think I was crazy, or that I was on candid camera. If you’ve experienced all that is the world of a professional patient, you will understand each one of these statements and why they are shocking. Imagine getting them all at once.
1. “I have several patients with your condition.”
What? I have never even met anyone else with my condition. My pulmonologist has one other patient with it. That’s the extent of people I even know exist in the area with this condition. It is diagnosed in 1 out every million people, so many doctors don’t even meet someone with it, and it isn’t in their norms wheelhouse unless they’re done a felllowship at the Cleveland Clinic, where this condition is studied, as my hematologist did. But even the rheumatologists I met had to admit they did not have any patients with this condition. So hearing that this doctor has several, while also hearing very clearly that he understands this disease the way you would imagine doctors understanding medical conditions without having to research them. That alone was enough to shock the conscience.
2. “This is not about my ego, it’s about your health.“
I’m sorry can you repeat that? Louder for the doctors in the back.
3. “I’m an expert in medicine, but I’m not an expert in your body. You are the expert in your body. I need your expertise to be able to do my job.”
OK, now you’re just poking fun at me, aren’t you?! If not. I have a liar of doctors who could use your guidance!
4. “I am never going to treat you like you’re crazy.”
I am not sure that’s entirely medically responsible. If I wasn’t crazy before, I am most definitely crazy now, after dealing with a bunch of doctors who are not you. I am heavily medicated for your protection. You have been warned. But thank you for giving me the opportunity I wish others had given me to try listening.
5. “I get the sense you can hold a lot. I can tell you are in more pain than you are telling me. I have a feeling by the time you get around to asking me a question, it’s way out of the spectrum of what is normal and I need to listen.”
🥺🥺🥺 I have said these words to people, trying to get them to understand my pain tolerance. How did he know? I didn’t tell him. But this has happened repeatedly, to the point that most people who know me enough to know anything about my medical condition have probably heard about this issue. It has been repeated in many settings. The most telling was the one when the kiddo‘s father went after the nurse to explain that my tolerance for pain was much higher than normal people, including his, and that if I am crying, that means something is wrong. Got to give the man credit there. 🙃 He was not wrong.
6. “If you’re telling me something is wrong, I don’t care what the numbers say; it means we need to keep looking to find out what is goingon.”
Holy shit. I mean, just holy shit. Excuse my language, but there is no other thing I can say at this point that expresses my shock that this guy would actually pay attention to something if the labs come back showing that I am healthy.
7. “I’m so sorry a doctor treated you that way. What an awkward situation to be in.”
OK I’ve heard that’s weird. I’ve heard a sort of stunned silence because the doctor didn’t know what to say about what would happen to me. I’m sure as a professional, they were wondering in the back of their minds if I did something to provoke it. But this is the first doctor who actually acknowledged comprehending how completely uncomfortable my experience would have made ANY patient. He actually recognized the emotion I would’ve felt in that circumstance.
8. “Thank you for bringing me these records.These will help a lot. They’ve given me a lot of background information to work with.”
He said this while actually looking at the records and making reference to what they said! To be contrasted against the many doctors who say thank you for bringing them records and stuff them into the back of the file, never to be seen again. And he actually understood why they were each significant and why I brought those specific records and not every record I have. This showed me that he understood my disease. That is a rarity in itself.
9. “Oh you came from this doctor? I love him! I work with him all the time. I love working with him.”
One of my dreams is that all of my doctors will communicate with each other the way my late husband’s doctors communicated with his oncologist at meetings to discuss his treatment plan. This doesn’t happen for people who have an autoimmune disease covered by a rheumatologist, who is usually primarily set up to treat arthritis type diseases, and only sometimes deals with other areas like vasculitis. I still don’t understand why there is not a specific position to deal with autoimmune diseases like an oncologist, and we are left to see specialist after specialist and try to get them to communicate with each other, which sometimes leads to inferiority/superiority/insecurity issues and may even cost you a doctor. You would be surprised how many doctors operate like teens or young adults when it comes to inferiority/superiority complexes, and will not hesitate to put something in your medical record out of spite, that will hurt you when subsequent doctors review it. You can tell me this doesn’t happen, but as a retired professional, I know this happens. I would hear about previous attorneys, and I would carefully evaluate the client to try to find out if the other attorney was actually a bad attorney, or if it was a bad client and likely to be a repeat. It’s a valid concern. And a very irresponsible and immature way for a doctor or other professional to respond. It was such a relief for this doctor to understand and acknowledge how Trumatic it was to go through that experience when I was already going through a Trumatic medical experience to begin with.
10. “You’re on this drug? Already? I was one of the first doctors do use that drug when it was released.”
😳 Are you serious!? 😳 It turned out he had been trying to figure out how to get his patience on the auto injector, which my pulmonologist had just gotten me approved for. He was very excited to know there was a way to do it, and was very excited that I was already on that treatment because that would’ve been his recommendation. He knew extensive information about the studies, and from there on, his knowledge surpassed mine. That’s the way I like it.
There were so many wonderful things he said, that I’ve decided to make this into a three part blog. I have written a lot of blogs and posts complaining about doctors, and they have taken a lot of space. But never have I had so many good things to say about a doctor that I ran out of space twice. But this is that time, and I’m willing to give it the time and space it deserves. Because I’ve noticed good doctors have no idea what other doctors treat us like. And we deserve better! So demand it! Wait for it. It took me 3 years. One step at a time!