I’m a 47 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 wanted to write about this for quite some time and couldn’t find the words. My friend found the words, although I hate with a passion that she is familiar with this feeling. That anyone is. It’s such a deep, deep heartbreak when family let you down when you need them the most, especially when your life is literally on the line. If this applies to you, read with caution. I was very triggered. It’s tragic, but it’s truth. Thank you, Abigail. ❤️ See her post below:
Regardless of what our family looks like, we all come from a group of people who have shaped us for our entire lives. The make up of each family is …
Please check out the following blog post by a friend/colleague who couldn’t have published it on a better day for me! I’m riding on fumes trying to track down mistakes that are interfering with my care/treatment. Perhaps this is why!
For the last five (5) years, I’ve been an active patient. This means I see a plethora of doctors regularly in a variety of places/states/types of …
There are very few people who don’t know what happened during the Oscars, which aired Sunday, March 27, 2022. It seems to be all anybody was talking about by Monday morning. I had actually stopped watching to watch a movie, and suddenly started getting news alerts about what happened. Videos had already been posted everywhere to see the instant replay.
I listened from the beginning of Chris Rock’s set until he finished speaking. Watch an uncensored video of it here. The joke Chris Rock made took a shot at Jada Pinkett Smith, referencing “GI Jane, Part 2,” comparing her head to that of Demi Moore when she shaved it to play G.I. Jane in the first movie.
As I began speaking with people about it, I noticed many of the people I spoke with felt Will Smith was out of line. I did not. I felt a little bit vindicated myself by what he did. Let me explain why.
Will Smith’s wife, Jada Pinkett Smith, openly disclosed to the public that she suffered from a medical condition called alopecia, which caused her hair to fall out. Rather than put on a wig, or even a scarf or a hat, she bravely wore her natural look, a look many have voluntarily worn, even without a medical condition. She was STUNNING exactly as she was! I didn’t even know about the medical condition, and I didn’t assume there had to be one.
Once I learned about the joke and saw Will Smith’s reaction, along with his wife’s face, I was floored. As a person who struggles with an autoimmune condition and is immunocompromised, I live every day with many of the negative effects of my medical condition on my ability to have a social life or even a regular normal life. There are so many things we go through, from losing friends and family, to losing pieces out of our bodies, to losing our dignity, losing our privacy, and just being subjected to ignorant and downright mean comments.
I am certain if his wife had cancer, the joke would never have been made. But when it comes to any other condition, people tend to lose their inhibitions and do everything from change their relationship with you, to suggesting bizarre things that anybody would have already considered as if you hadn’t thought to pray, exercise or take some special water from a healing rock in New Zealand. (I’ve heard it all. There are lists. With the most common ridiculous suggestions we get.)
So when I sit and think about the indignity Will Smith’s wife must have felt when a joke was made about her medical condition, I feel the same rage she felt, and that he felt on her behalf. Having been a caretaker for somebody with cancer, and now being a professional patient, I’ve seen both sides of that stick. They are equally tragic. We deal with enough loss, trauma, depression, and anxiety without people going out of their way to point out symptoms of our medical conditions or simply be repulsively mean-spirited!
I felt so strongly that I began to feel angry when people responded that Will Smith was out of line, and not Chris Rock. When a doctor said the same thing, I felt like I needed to check myself. I contacted a friend who is “living while dying,” with stage IV metastatic and terminal breast cancer, and who runs an amazing blog about it (nohalfmeasures.blog), and asked if she felt what I did.
It’s easy to see why we are friends. She had actually already created a blog post about the same issue and she felt exactly the same way I did, along with some extra things she noticed that you will have to read in her blog when it posts. Check out her blog, linked below!
But I was grateful. I was grateful that I wasn’t the only person who was not only 100% in Will Smith’s corner, but I felt a sense of vindication on behalf of every person who has struggled with cruelty on top of a serious or embarrassing medical condition. I felt as if that slap landed one point in our corner. Just ONCE!
I’ve heard that he’s a comedian and an actor, and he should know how to take jokes. A joke is something that is funny. Making fun of somebody’s medical condition is not funny. If you don’t understand this, you or someone you love has not experienced that kind of cruelty. Much less on a stage, being broadcast publicly and live.
Yes, he is an actor. Yes, he is a comedian. However, he is also a human being. And this just goes to show that even celebrities are not exempt from the emotional and highly charged issues people with medical conditions deal with every day. There was a rage inside of him that didn’t allow him to do anything other than what he did. His apology to everyone that deserved one did an excellent job of explaining that. Nothing could come closer to what he experienced than a parent protecting his child from intentional harm by someone else.
That is exactly the level of rage we experience when somebody is nasty to our loved ones who are already sick and struggling. In fact, I wonder if we could even angrier as the caretakers. Sometimes the patient’s themselves are already defeated, weak, ill and accustomed to the abuse, etc. That is when the caretaker becomes the most enraged. I remember very clearly some of the ways that I advocated on behalf of my late husband as he suffered from skin cancer that spread to his lungs and brain, and ultimately took him from us.
Having lived that, and watching his children grow up without him, still suffering because of that horrific disease, and having also lived and still living with an auto immune condition that has completely wrecked my life, I feel every bit of the rage that led to what Will Smith did, and the sadness and pain in his very authentic apology and explanation.
This is real life, folks! This is what we deal with every day. And most of the time, nobody stands up and smacks somebody who disrespects us on such a deep level. WE don’t even do it! Is it violence? Yes. Is it possibly illegal? Yes. And if you think violence and breaking the law are never necessary, I challenge you to look up how America was obtained by Americans, and what our response is once someone threatens OUR country. History has shown repeatedly that violence is sometimes the only thing that works. It’s a sad, but true, fact.
So on behalf of everybody suffering from a medical condition that causes embarrassment or interferes with their lives in any way that results in blows to their dignity, I want to thank Will Smith. Thank you, for landing one solid “blow” on behalf of every single one of us. We tearfully appreciate it!
If you are one of those people who thinks he shouldn’t have done what he did, I would like to challenge you to contact somebody you know who is suffering from such a medical condition and is willing to speak with you, and ask them how they feel about it. I suspect the majority of them will feel the same way my friend and I did.
That said, I welcome all viewpoints. Especially from people who fit the category of people living with medical conditions as described above.
I hope everybody will at least take a second to think about how much we go through. Not only the conditions we already deal with, but having dealt with them during a pandemic, when vaccines did not prove effective for many of us as restrictions and masks were discarded by so many people. When we have watched several people with our conditions die from those conditions and know that we may be next.
It’s a lot. It’s heavy. So much heavier than having been slapped on a stage for making one of the most inappropriate jokes I have ever heard on such a stage.
Several years into my life while on disability, I was referred for physical therapy. I showed up to my appointment and was happy I remembered to bring my med list. It’s always helpful to not have to remember and write them all down. That happiness was short-lived. The PT went to make a copy and return my original, and then sat down briefly before the following happened.
“Do you have a primary doctor?” (YES) “Do you have an appointment with him soon? Or any of your doctors?” (Sure, I have appointments with most of them on a regular basis.) “Well, they have you on TWENTY EIGHT MEDS!” 😑
I didn’t have enough time to get angry. I was kind of in shock. I tried to explain vasculitis to him and why I see so many specialists and take so many medications. It got worse instead of better.
He said I should speak with the doctors (as if I hadn’t) because “they should take me off of some medications and change my diet and exercise.” Wow. Just… WOW.
I remained shocked by the audacity of this physical therapist to make the kind of accusation he was implying, while also being amused and considering whether to ask him if he was going to recommend that I pray next.
A medical professional. How embarrassing and sad! It was a little bit comical when he asked about the doctors and I mentioned that I have exceptional doctors who head their departments or even their hospitals. I mentioned my pulmonologist, and his attitude changed quickly. He started apologizing and saying he didn’t mean to be rude, and of course that he knows Dr. Pulmonology. (Everybody knows him. That’s his hospital!) So I think he realized he might be stepping on some very big toes that will not hesitate to call him out!
I sat there, thinking: I already know what I’m on, my doctors already know what I’m on, my pharmacist knows what I’m on, and my insurance knows what I’m on, so the only new information here is confirmation that the PT can count. But I remained rather speechless.
It wasn’t until I got into my car that I began to get angry. Somehow I either put it aside or simply dissociated from it, until I spoke with another member of my support group for my condition. She was so angry about it that I finally realized I was not wrong to be upset.
Exercising takes on a whole new meaning when you have trouble breathing. When you have asthma, vasculitis and lung disease, and pulmonary hypertension on occasion. I am also not on any medications for no reason. I regularly ask my doctors if there are any medications I can stop. They repeatedly tell me “not if [I] want to stay alive.”
I expect this from people who don’t know anything about medicine. I do NOT (or SHOULD NOT) expect this from a medical professional who has to have worked with cancer patients and other patients who need physical therapy as part of their treatment plan with their doctors. I was not prepared for it, and I’m still not sure how I’m going to handle it.
If I went to his superiors, I don’t think I would want to go back and be seen by him. I could also contact my pulmonologist, and let him have a go at him. Again, I wouldn’t want to go back there. Another option I considered was coming in next week with my entire medication list along with what each medication is for, and asking him which medicines he suggests I stop taking, so I can let my doctors know why he thinks he knows more than they do.
I could also try just talking to him, but I think I’ve already come to the conclusion that I don’t want to be treated by somebody who thinks I’m just fat and lazy, and knows nothing about my condition. He just decided I was on too many, based on his PT medical or pharmaceutical knowledge, and felt it his place to scold my doctors through me.
He also didn’t seem interested in even ASKING why I was on so many meds. Or for that matter, why I was there. I was there for HEADACHES and STRESS/TENSION in my neck that my doctor said was “out of control” when he felt my neck. But Dr. PT just determined I had a full range of motion that day and probably wouldn’t be approved for therapy.
One more time the lesson is learned that you should ask questions rather than make assumptions. This is especially true when you are dealing with somebody who quite clearly has an unusual medical profile! I would have easy explained if he had asked.
Now I have to come to a decision before my next appointment. I need to find a calm way to explain to the physical therapist that he needs to stay in his lane and not worry about what my doctors are doing, whether or not I stay to be treated by him. Ideas are welcome!
I live in a country (USA) where in most states, it is illegal to allow a dog or a cat to live in suffering, but it is also illegal to help someone who is human to end their own suffering. I say most states because some allow it, but only if your doctor says you are eligible for hospice or close enough to death. If you are young and suffering daily, this isn’t an option. You have a life sentence.
I was asked today if I have ever had feelings of being suicidal. I had to pause, because this is a hot button issue for me in so many, many ways. Everyone who is chronically ill to the point of not being able to live a normal life, or terminally ill, has probably considered this. It’s not that we are suicidal. It’s that we are acutely aware of what awaits us, we do not want to be a burden, and there is a certain point where we simply think the benefits of being alive are no longer outweighed bye the heaviness and pain of our medical conditions. We have DNR’s (do not resuscitate), living wills and advanced directives. But there’s only so much we can do without violating the law or asking someone else too.
For me, the situation is exacerbated by my family history. When I was 26, I watched my husband die from skin cancer that spread to his lungs and brain. At one point or another, he asked five different friends and family members to kill him. Nobody was able to do that. It’s heartbreaking feeling, knowing it is his last request and you can’t do it.
Five years later, I experienced a far more traumatic example of why this is an issue. My grandfather took care of my grandmother for 10 years while she had Alzheimer’s disease. He was proud to do it, as he Said she had taken care of him his entire life, and it was his turn to take care of her. He took her for drinks on Friday nights, took her to get her manicures and pedicures every week, and took her for a walk every night. I also remember his keys and how every door locked from the inside instead of just from the outside to keep her from wandering away. He took great joy and being able to take care of her.
At some point she got to a place where she was crying every day, couldn’t remember why her hip was in so much pain, and was begging to die. He took her to her doctor, and they refilled some medication she was already on, and said see you next year. I had a conversation with him later in this story and he asked me what I thought that meant. I answered honestly, “there was nothing more they could do for her.” He said, “Exactly.”
On October 3, 2004, my grandfather laid out all his paperwork, banking records, and I believe he at least tried to write a letter, though I don’t think it was ever made available to the family. He talked to my mom about a boxing on tv that night and said goodnight like normal. But the next morning, he made a call to his son, a nationally renowned doctor, and sad, “I killed your mother, how can I kill myself?”
My uncle told him to simply take her bottle of pills and he would go to sleep. This actually gave him time to contact the sheriffs office, and they were able to get there in time to get him medical help so they survived.
He knew what he was doing. I had to keep my six year old from watching the news, because he came on in a picture with the words below it, “murder or mercy killing?” I had a unique perspective, having watched my husband slowly die. Having wanted to do what he asked me to do. We were not able to do it, but my grandfather was. He knew what he would face. I don’t believe he wanted to die, as he was a veteran and worked in a pretty difficult field in the army. I think if he had wanted to die, he would have. This was his way of trying to stay alive, while hopefully not spending the rest of his life in a prison cell when he had never had so much as a speeding ticket in his entire life.
He spent three months behind bars, and I remember crying when I brought his glasses and they said he couldn’t have them at the hospital. Finally they released him on bond on the condition that he remained with a family member at all times. The entire court room stood up and clapped after everyone testified and the judge made the ruling. Lucky me, of all the people in the court room, I was the one who caught on camera in tears, in my last year of law school. The next day people kept saying they saw me on TV, and I had no idea how to respond because that meant they knew why I was there.
He spent his last days living with my mother, and I will try to help out by taking him to visit my other grandfather so they could play dominoes, and I still remember driving him to vote, which he was very proud of. That was the car ride where he asked the question about what I would’ve thought a doctor’s appointment. I had the chance to tell him I completely understood because we had been through a similar thing with my husband. I felt like I was the only person who really and truly understood. And I was angry. I was angry that what he was doing was saving her from pain, just like somebody want for a dog, except that is considered kind, and helping a human to do the same is a crime.
My grandfather passed less than a year later, from emphysema, literally during my last final exams for law school. I remember wearing his necklace to my graduation. We had a very small ceremony in the backyard of my mother’s house. We had a group come out and do the military honors for him. If he had gone through a trial and been convicted, he would have lost his pension from the military. I understand why some people don’t agree or understand what he did. But having been there, I know this was the greatest act of love somebody could possibly give. He was willing to give up his freedom, and the rest of his life, to stop my grandmother’s suffering.
To this date, his obituary that we wrote is online, as the Orlando Sentinel decided to make him the featured obituary that day. Unfortunately, people complained and they had to print a correction that goes with it, acknowledging that at the time of death, he was awaiting trial for first degree murder.
So if you ask me if I have ever thought about suicide, I would have to say it has crossed my mind. I don’t want anyone to be in the position I have seen so many people in. Our family has been stressed and pulled in different directions ever since. That said, I would not actually commit suicide so long as I have a living children, which I have three of us including a stepdaughter. I would never want them to think I gave up and left them abandoned.
But I have become very aware that there are many people who are living in constant agony, and there is no solution or cure to what they are suffering with. Nevertheless, our laws don’t permit legal voluntary euthanasia. It does not allow them to get help or even take their own lives in a dignified manner. I will never understand this.
Ironically, the term used when putting an animal down is “humane.” Letting them live while suffering is “inhumane.” Yet, it is illegal to “put down” a suffering human, even at their own request.
I will never find this OK. Now, as I deal with my own chronic illness, which could become terminal or instantly kill me at any moment, I find myself terrified of ending up in a similar place to my grandmother and my late husband. I wouldn’t wish this on my worst enemy. The illnesses or the family’s burden.
As I continue trying to raise awareness of both Alzheimer’s disease, and my own condition, EGPA vasculitis), I continue to follow legislation and groups trying to make voluntary euthanasia legal in the United States. If it’s good enough for our pets, because quality of life is important, why is it not good enough for us human animals? What are your thoughts, and why?
If you would like to contribute to the Alzheimer’s awareness walk I am doing with my daughter on December 11, 2021, it would be greatly appreciated!
At this moment, my second cousin, a physician, sits on a ventilator with Covid while his 80 year old mom, brother and sister, wife and young child (along with we, the extended family) are praying he is one of the lucky ones.
Yes, he was vaccinated. No, he didn’t stop treating unvaccinated patients. That’s who he is.
I am angry. I saw an amazing post today that said, “People say they don’t believe the science, and then come to the science to heal them.” This is the result. When we lose the doctors who are giving us the science, who will be left to help the sick?
In South Florida this week, doctors walked out in protest of unvaccinated people. Good for them! I posted the article without knowing how close it would hit to home.
Yes, we all have rights. However those rights end when they infringe upon the rights of other people. There really is no excuse anymore. At this point, you have the information. You are simply choosing to kill people for whatever reason you are telling yourself.
I hope you can live with that. I also hope my cousin has the chance to live with it.
Lastly, if you don’t believe the science in front of you and choose not to be vaccinated for your own sake or the sake of anyone you love, just stay home and let the virus run its course so you don’t get put into the secret government conspiracy by your doctors. Don’t come to them for help later and kill them.
Recently I went to a medical supply store to pick up a new octopus (CPAP machine). I arrived 15 minutes early. For a military family that’s on time. Admittedly, I usually fail at this. I walked up to the door from my parking space, which was pretty far away. I found the usual collage of Covid signs all over the door. But one of them stuck out. Right in the middle was a sign that said, “Please wait until your appointment time to knock.“ 🤔 Ok.
It didn’t seem so weird. Until a large man opened the door as if he was going to let me in, was very polite, and then asked what time my appointment was. When I said it was at 2o’clock, he said, “he doesn’t let people in until the time of their appointments.” With that, he closed and locked the door and that was that.
I contemplated walking back to my car, but knew that if I did, walking back I would end up needing an asthma inhaler. There was no where to sit. I walked around and noticed the sign and that the place was actually an oxygen supply store.
Really? That’s how they treat people who need supplemental oxygen to live and may be out of it? Wow. I was floored. I decided to go get my walker from the car so that I could use it to walk back and then use the seat in it to wait. Before I sat, I noticed there were two chairs just behind the window and the door in what appeared to be a reception area. Now I was irritated. The bouncer couldn’t even offer me a chair?
I started taking pictures of the chairs and the signs. Suddenly a different gentleman with a completely different demeanor came to the door, opened it, picked up my keys from the floor and asked, “are these your keys honey?” I said yes and he welcome to me in and said he would take care of me and he was so sorry.
I actually didn’t have anxiety about going here because they had already worked out the magical mess that always happens at every doctors appointment or insurance situation with the exception of a few very well run places when we were on the phone, and one of those well run places had to call there and ask what the hell was going on, which they admitted to me on the phone had made me the topic of conversation that entire morning. My machine was a month late, they had the wrong phone number, and they said they had emailed me but did not have my email address.
Then they tried to charge me under a different insurance. I told them I had already passed the catastrophic stage of my insurance and I don’t pay anything. Finally a supervisor came out and said it had been entered wrong and apologized. She said she would fix it. Guess what Mr. Sweet receptionist asked me for when he checked me in? The same co-pay. This is why I need anxiety medication to go to medical appointments of any kind.
When I started explaining their supervisor had to come out and fix it, the receptionist finally remembered and he was actually very sweet and said he knew exactly what I was talking about and would get it fixed right away, which he did. So in the end, most of the appointment went well.
I was just really shocked at how they treat patients given the context of it being an oxygen supply store. I feel very sorry for most of their clients. Especially the elderly ones trying to lug an oxygen tank from handicap spaces that are all the way at the end of the parking lot.
CONTEXT CLUES: CHAPTER TWO
I got to experience a second lesson in context clues that had nothing to do with where we were. For the most part. A gentleman came in and sat next to me who spoke Spanish. He said he was also from Puerto Rico. Then he said he was there to return all of the equipment he had with him because his wife had _______. I’m using a blank here because I’m pretty sure I heard the wrong word.
What I heard, was the following: “ mi esposa falló.” To me this sounds like a word that means “made a mistake.” However, the tone he used and the fact that he was returning all of her equipment. Not just an oxygen tank or a CPAP machine, made me wonder if the word could have another meaning. This is where the comedy that is my family comes in.
I told the man I had lost my husband at a young age. But I was very concerned about whether that would be appropriate or if I had just misunderstood and embarrassed myself. I quickly texted my mother and asked her what the word meant. My mother promptly replied with a voice message.
I texted my mother back and reminded her that I was sitting next to the man and could not listen to her message. She responded with another voice message. I was getting irritated and was asking what she did not understand about the fact that sending me a voice message is completely useless if I can’t hear it.
If I had known what she was saying, I would have known she said that the word meant his wife, “effed up.” To which I would have responded, “Ummm… I think the context here suggests otherwise. Unless he means she jumped in front of a truck by accident.”
Then he went to the reception area where they asked why he was there and he said he was returning all of the equipment. And all of his brilliance although he was very sweet, the receptionist actually asked why. The man said an English that she had passed away.
I was relieved to know I was correct, and also heartbroken for him. I was headed to Puerto Rico in about a month and he’s headed to Puerto Rico in about a week. For completely different reasons. But now I was still stuck with asking my mom with the appropriate response would be or the appropriate thing to say. It’s out of my range of Spanish. I thought.
But having received another voice message from my mother, and when I was called back, I had no choice but to say something. Or to just be rude. So I said, “Cuídate.” (Take care of yourself.)
I would later learn that there are two words in Puerto Rico that mean two entirely different things that sound very similar. “Falló” means to mess up. “Falleció,” however, means to pass away. Thank God for context clues, because the only word I had ever heard for somebody dying was, “Murió.” ￼
When I got into the car I tried to call my mother to ask what in the world was wrong with her that she was responding in voice messages no matter how many times I said I can’t hear them because the man is sitting next to me. SHE TEXTED BACK, “Call later.”
Me: “NOW YOU CAN TEXT!?”
And that was pretty much the end of my Friday. I won’t continue with the insurance battle that finished off the day. The insurance battles are getting too tense to even talk about.
For anybody who thinks context clues that you were taught in elementary school or not really that important, I beg to differ. Pay attention in school. You never know when it might become critical to know something you thought was irrelevant.
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.