Tag: health

Part 2: What I Found Out After My Hysterectomy

Image by Arek Socha from Pixabay

Let me start by saying that in no way did I think there would be a part two to my original blog post about my hysterectomy. I’m putting this second piece out there as a personal wish that a physician or another person who also experienced this scenario can connect with me to discuss it. So far I’m coming up empty on my Google searches. After my follow up with my surgeon, I was left dumbfounded.

Roughly two weeks after my laparoscopic hysterectomy, I went to my follow up appointment. A PA came into the room in a strikingly good mood. I remember being surprised because her disposition was like that of someone who had one too many cups of coffee, not only was she flitting around the room energetically, she was very happy, which immediately put me at ease. She sat down and asked me some follow up questions: Did I have any pain? Not really.Was I still taking my heavy pain meds? No. Was there any bleeding? No. Anything going on I felt worth mentioning? Yes, headaches, hot flashes, and fatigue. With every answer there was a resounding “GREAT!” or “That’s normal!” to each of my responses. We’d go over those three symptoms shortly with the doctor. She pulled up my chart and told me that my uterus looked good, and there was no cancer to be concerned about which was excellent news. I stopped her there and asked her what did she mean about my uterus looking good?

“My uterus looked good you mean because there’s no cancer right? But you saw it had the adenomyosis on it, right? Was there anything else going on with it? “

“You didn’t have adenomyosis. Your uterus was perfect.” I suddenly realized it was nervous energy she was emitting.

Um. What?

With that, she said, it’s time for the surgeon to come in and chat with you, she’ll be right in.

My mind was spinning. I felt a jolt of hot anger and then panic as I realized that maybe none of my symptoms would go away following my surgery. The surgeon came in and sat down. She handed me a piece of paper and said it was my report. She said she had great news, that my uterus was healthy, no adenomyosis, no cancer, no endometriosis or anything of that nature. My cervix was enflamed, but that was really it.

“Wait. How can it be that three different tests: ultrasound, CT scan, and MRI were all wrong? Each one said something was wrong with the uterus, and the MRI confirmed adenomyosis, so how can my uterus be healthy?”

“Sometimes these things are a mystery. But either way, you won’t have to worry about having pain, severe fatigue, passing clots, all the bad things surrounding your menstrual cycles anymore, so this surgery was still a very good thing.”

She mentioned it was best I stay on the birth control pill because it actually reduces ovarian cancer by 50% in women my age. I reminded them that these awful headaches started when I went on the pill four months ago, and I would be going off of it as soon as it was possible, but thanked them for letting me know. They asked me to wait to go off the hormones since my body has just had major surgery. We agreed I’d take one more pack before quitting. I took my report, thanked them, and left.

Once I was sitting in the privacy of my car in the parking lot, I called my husband and cried like a baby. The idea of having just had this surgery only to find out all the tests were wrong, my symptoms must be coming from elsewhere, and that I still may have to deal with many of my symptoms was crushing.

I read the report over and over. I did see something that the doctors did not mention, and immediately thought it must not have been important enough to bring up. It was a paraovarian cyst on/in the fallopain tube. This can cause pain but cannot be detected when in the body. These are only found when they look at the organs after they are removed. It was tiny so who knows if this was causing any issues, and again, the doctors did not mention this to me. Honestly, I was just trying to find an answer of some kind to any of this, since it was feeling a lot like I just did all this for nothing.

The biggest shock to me through all of this-is the fact that not one, not two, but three different tests with three different doctors all said my uterus had a problem. How can this be that my uterus was in essence “perfectly fine”? If you are a physician reading this, please write me and tell me about your experiences, if any, with this. If you are a person- woman or man- who has experienced multiple tests being wrong, please write me about your experience. I have never heard of something like this.

Of course my friends have asked me if I would hurl a lawsuit at the doctor. The answer is no, absolutely not. Three doctors all from separate practices interpreted the results so it’s not like one of them lied to get the money for the surgery. The doctor that said it was adenomyosis on the MRI isn’t affiliated with the surgeon at Yale that did the surgery, and that surgeon was actually my second opinion doctor. It just makes this whole experience shocking and disappointing. In my previous article on the surgery, I implored you all to be advocates for yourselves, to get the right tests, to be thorough about your health, but what if the tests are wrong? That thought had never crossed my mind.

Also, two letters came in the mail about a week ago from my insurance company. It turns out my expedited departure from the hospital was in fact not by my doctor or nurse’s urging, it was the insurance company’s decision. They had declined an overnight stay and only gave permission for a 30 minute observation after surgery. This was also eye-opening to me. Why in the world is my insurance company approving whether or not I am allowed to stay in the hospital? And why would insurance not cover that stay? Our healthcare in this country has such a long way to go. No shocker there.

Lastly, while my recovery is going quite well 3 weeks later, I began experiencing that ever familiar fatigue again that I had prior to surgery this week. As a reminder, I’m on iron supplements, B12, and magnesium to try to get the anemia in check. So, while the recovery piece is a definite positive, the reappearance of this symptom I’ve so wanted to kick to the curb has been a bit of a downer. The real interesting part is going to be when I go off the hormones at the end of this month. Will everything come back just the way it was or will my energy and symptoms improve? Not sure, but all I can do is hope to God it’s better! I am seriously not sure what other steps there even are. My next scheduled blood work is in December with the naturopath. While there is so much in my life to be grateful for, it’s frustrating when you are a health mystery with no answers.

Quick update to this post- it has been 5 months since my surgery and my health has drastically improved. The fatigue vanished after that last time I wrote about it above. No more pain, no more heavy eyes, brain fog, etc. My anemia has greatly diminished. And amazingly, I have not had one interstitial cystitis flare since back in September. It turns out my hysterectomy was one of the best decisions in my life.

Journey To A Laparoscopic Hysterectomy

I’m writing this with women in mind who have gone back and forth with their medical providers on what to do with their bodies when something is not as it should be. Doctors are not infallible and in the end, it is up to all of us to be our own advocates in many aspects of life, but most seriously when it comes to our health. Never stop seeking answers when it comes to your health.

I’ve had hormonal events or occurrences throughout my life beginning from the age of 15 up until now as a 41 year old. I had D-MER while nursing both my sons, overproduced milk so much that I was blessed with the special hell of mastitis 4 times with each child, gave my second son breast milk jaundice, and apparently became pregnant within moments of deciding to have a baby both times. Hormones not only are fascinating, but are gut wrenchingly, jaw droppingly shocking in terms of what kind of maneuvers they are capable of causing. I have found myself perplexed and in awe when talking with several different women and friends about their different experiences, oddities, and symptoms caused by our little friends called hormones.

When I was 15, I was participating at a cheerleading fundraiser where we were bagging groceries, when to my complete embarrassment, I threw up and passed out. That was the beginning of my tumultuous experience with hormones. Shortly thereafter, I was put on birth control pills due to ovarian cyst issues and that solved all my issues for years to come.

The birth control pill worked wonders up until I was in my senior year in college when I would begin to have this strange heavy eyelid occurrence during my time of the month. It was a symptom I’d get just hours before I knew my period would be on its way. Little did I know this odd symptom would worsen and stay for an extended time as I grew older, as well as the the avalanche of symptoms that would befall me in my late twenties.

At the age of 28 the pill was no longer working any of its magic. I was in agony for 6-7 days a month and needed to find out what was going on. I had a laparoscopic procedure and endometriosis was ruled out. It was already understood that I had an issue with recurring ovarian cysts, but the menorrhagia was a mystery. The doctor’s advice was to speed up our plans to get pregnant if possible. If I was pregnant, it would save me 9 months of agony each month (depending on how you look at it). We had been married a year and were enjoying weekend jaunts when possible as my husband was building his chiropractic practice and I had just switched jobs. It wasn’t the ideal time to get pregnant since I was new in my job and wasn’t quite ready yet for a baby. I certainly wasn’t about to pay for the birth of a baby out of pocket, so best to wait for that health insurance to kick in first.

The following year, my friend of 24 years, Jamie, called me in October and said, “You know what would be cool? If we got pregnant at the same time. Let me chart your ovulation and tell you when to try!” I talked it over with my husband and we nervously and excitedly committed, “Let’s do it!”

On that same call she realized I was ovulating that day. So she said today and tomorrow are your days- go for it. The next month, I missed my period and took a pregnancy test and it confirmed that baby French was on the way. Whoa, I thought, clearly I was on the very fertile side.

A few years went by, and we decided we wanted another baby. After the birth of our second son in 2013, about a year later, it was determined that I was no longer a candidate for birth control. I bled through it for three months. After going off of it, I started having more ovarian cyst episodes, longer periods, and horrible pain. My eyelids became impossible to keep open for 2 days of the 7 and each month. I would have to call out sick or hope that the 2 worst days fell on a weekend. More tests were done and still, it was not clear what was wrong. An IUD was suggested and that was a full week of torture for my nether regions before I went running back and demanded the doctor remove it. It was then he suggested thinking about an ablation or hysterectomy back when I was 34.

I wasn’t really sure then what to do. I didn’t feel ready for a hysterectomy and we had a large deductible with our insurance at the time. The doctor asked how my tolerance for pain was and asked if I could try to just deal each month and take plenty of ibuprofen on days when I needed it. I said I would see how it went. This went on for another 4 years. Trips to the ER for cyst ruptures, pressure on my eyelids going beyond the usual 2 days sometimes stretching as far as the full 7 days. Fatigue crept in and overtook me as a person. Combined with finding out I had a bladder condition (interstitial cystitis) a few years back, my energy was just zapped constantly. I am someone who prides myself on never cancelling plans or breaking a promise, as well as being super active. Cancelled plans, excuses to my boys, and broken promises, all became the new me, thanks to my health deteriorating.

I started to get chronic UTI infections and eventually got a kidney infection. The infection was so bad and lasted 9 days because my physician at the time put me on a very low grade antibiotic and when the symptoms worsened she kept saying she couldn’t help me and to go to the ER. When I pointed out the radiologist was across the street and I could easily have answers within the hour if she called the order in right then, she finally agreed to have me get a ct scan across the street that day.

It was there, after passing out in the waiting room from the pain, I was told that fibroids were in my uterine wall. No big deal, we take care of that swiftly and painlessly, one of the doctors said as he handed me his card. I had large cysts on both ovaries and a raging infection but the fibroid was not causing any of my current issues, they said. I felt relief hearing from this man that fibroids were “no big deal”. I know now that a fibroid was a reason why one of my friend’s could not get pregnant years ago, so thankfully, I was done having children at that point. Following that experience, I decided to get a new primary doctor and was promptly put on stronger antibiotics so that my infection could be dealt with properly.

My infections continued off and on, my hair fell out in clumps, and now the 7 days I was down and out turned into 2 weeks. Not only was I couch bound during my menstrual cycle, I was exhausted and in a lot of pain mid-cycle too. I kept a diary of all of my symptoms and shared them with my new gynecologist. She said I should get an MRI. My husband and I wondered what an MRI would show that a ct scan and ultrasound (which I had had several months prior)had not already shown. The doctor explained that an MRI shows the whole picture and a level of detail that those other tests simply do not. This was important information that we were unaware of. She said the MRI is the test that actually tells us if what we’re looking at is cancer. I could not believe the other doctor had not recommended an MRI earlier after hearing this sentence and I thanked my lucky stars in that moment.

The MRI came back and confirmed I did not have a fibroid. I had what is called adenomyosis. This is a condition where the endometrial tissue exists within and grows into the uterine wall. It is very painful, causes severe fatigue, anemia, and can worsen over time. It appears late in childbearing years and disappears after menopause. When given the diagnosis, the doctor recommended I go back on birth control to manage the horrible hormonal symptoms happening for 2 weeks to me each month. My husband was confused. His first response was,”The only cure for adenomyosis is a hysterectomy. Why are we bandaiding this?”

I went back and forth for 3 months with my new gynecologist about my symptoms after trying to go back on birth control pills to manage the adenomyosis symptoms. Some symptoms thankfully did go away, some did not and some new ones started showing up. I asked her about ablation or hysterectomy but she said she was really averse to any surgery and her overall goal is to always avoid surgery if possible. I decided in that moment to get a second opinion. Why wait and leave this in me and suffer through any longer? The second opinion was with a gynecological oncology surgeon at Yale. She took a look at my MRI asked me about my symptoms and agreed this was a great option for me. She asked me to think about it for two weeks before making my decision. But in my gut, I already knew that I would be getting a robotic laparoscopic hysterectomy as soon as it was possible. I left that appointment with an extra bounce in my step, knowing I was on the way to getting my energy and my life back. 2 whole weeks of every month back is a lot of time with my husband, kids, job, and friends.

On Thursday, September 17th, my husband and I made our way to Yale in the dark of the morning. My surgery was the first one of the day at 7:30 and we were to arrive at 6. My Mother-in-Law would arrive to the house in the morning to watch the boys for one night and two days. One of the most shocking things about this experience was that they discharge you almost immediately after. It’s kind of insane. They’ve just taken my cervix, my uterus, and my fallopian tubes out and now I will be sent home to heal. I think a one to two day stay is much more appropriate, but maybe that’s just me.

I had completed my pre-opp assignments prior:COVID-19 test, lung X-ray, bloodwork. I was so worried that one of those things would derail the surgery, but thankfully they did not. They put the anesthesia mask on me and went to work. 4 incisions across the belly total, one through the belly button where a camera is inserted to check out the gallbladder, liver,etc. to look for anything else being amiss. The surgery lasted approximately 2 hours and I woke up around noon. All went well and my other organs looked healthy. Just as I was opening my eyes the nurse approached my room.

“How are you doing?” she asked.

“Good, when can I see my husband? Is he allowed in here?”

“I’ll get your discharge papers and he can come up as long as you’re being discharged.”

Somewhere in between the 15 minutes of waking up and being discharged

I thought I was having a lucid dream. A few minutes later, my husband was standing in my room and the nurse was reading my discharge instructions. I didn’t need to walk around, use the bathroom first, or do a test to see if I could keep food down. They sent him down to grab the car from the valet and moments later, a man with a wheelchair showed up to take me down to the car.

Once outside, I nodded in and out of sleep for what felt like an hour while waiting for the car. It felt like an hour because it was an hour. The valet woman never entered my husband’s ticket number into the machine so the valet man never received instructions to go get our car. After 52 minutes of just hanging outside in the wheelchair I yelled at my husband to please do something or yell at someone to get us the hell out of there! The other people who had been waiting alongside us cheered me on and muttered their grievances too.My husband tentatively approached the valet and softly expressed something that did not sound like a patron who had been waiting with his heavily drugged -just-had -surgery wife who had been waiting outside for their car for an hour. Finally they realized their mistake and the car finally showed up.

From there my husband drove me to my dear friend’s home. I will be forever indebted for this kind and nutty offer. She offered to be a nurse to me during my first few days home from the hospital since it would be difficult to get around.It was also an offer of refuge from my home where us moms find it impossible not to get up and help the kids with something, put a dish away, or to truly be left alone to rest. The default is often mom will do it, so when we’re taken out of the equation – it’s much easier! Thank you, sweet Andrea!

Today is my 6th day of recovery and it’s going well. I stopped taking the heavy duty pain meds on Saturday and have been alternating between ibuprofen and Tylenol every 4-6 hours. I get tired very easily and sleep a lot. The incisions are a bit sore, but manageable. Stupidly, I cleaned my kitchen and the boys’s rooms yesterday and then could not move the rest of the day and slept for the rest of it. Won’t be doing that for awhile so if you come over anytime soon, I apologize if my house is trashed. I plan to drive tomorrow for the first time to pick up my son from school. My post op appointment is in a few days when I will hopefully get the biopsy results from each of the organs they removed. Fingers crossed on that.

While I was on the path to getting this sorted out, I was told that my ovaries may continue to wreak havoc with cysts, and the heavy eyelids, and the mid cycle pain. It’s not ideal to take the ovaries out this young so we thought it best I keep them. As a result of knowing there may still be some issues to be dealt with, I enlisted the help of a naturopath who discovered my anemia, my complete and utter lack of ferritin (hello hair loss!), my lack of estrogen, high cortisol, borderline thyroid, among a few other things. I’ve just received my 20 supplements to take- booyah! Just kidding – it’s like 8 supplements not 20. My counter has like a million bottles on it at the moment. But bring it- I will take whatever I can to kick this anemia’s butt and try to get some healthy hair growth going on.

This recovery period brings me such appreciation for the friends in my life. Friends are truly my fam here in CT. A friend who I met through the PTA two years ago at my sons’ elementary school offered to organize a meal train for 7 days for lunches and dinners to be delivered to our family which has been an enormous help and extremely generous. My husband is totally anti getting anything for free like this so he is mortified that we’re receiving a meal train. Meanwhile, I don’t know what I’d have done without it so THANK YOU, Anna.

Friends have come and sat in bed with me, stopped by to have conversation, and brought me fun mags, cushy robe and soft socks, and other thoughtful messages and items. They’ve picked up my kids and dropped them off while some have taken them for a few hours each day so I could sleep in peace. They are all extremely busy women, who have families and jobs and it makes me get all annoying and emotional and gooey just thinking of how much they’ve done for me these last few days. It takes a village and I’m so grateful for mine. My friends who don’t live here who are in Ohio and Illinois, have checked in daily and for that I feel loved from afar. When you’re out of it and healing and away from the world in your bed, it feels so nice to feel the love because it can feel lonely otherwise. My boys and husband have been so sweet, and gentle, and helpful too.

I am so pumped to get through this recovery period (which I’m hoping will be wrapped up in 2 weeks) and to start my new life with renewed energy. My uterus cannot hold me down anymore! If you’re getting the same stale answers from your doctors, and you know in your heart you should be getting a second opinion-do it. If you’ve had chronic, debilitating periods, keep getting tests until you get answers. Make sure you are getting the RIGHT tests and thorough treatment.

Observations During a Pandemic

Today is the 23rd day of practicing social distancing, of school being closed, of working from home. It’s about to be the third week of restaurants and stores being shut down, doctors’ offices practicing telehealth versus in-person visits. Today, another realization hits me, just like the day before, and the day before that day, just as all the future days another new reality will become uncovered during this pandemic. Drawn to the news like a dog to a squirrel during the first few weeks of its rise, I can only bring myself to watch sparingly now.

I felt compelled to write something, but not just regurgitate everything else I’m reading or seeing. What can I write that is meaningful during such a historically sad time? This was the question circulating over the past few weeks in my mind, and it landed on recording my personal observations and experiences – both good and bad. May be you’ll relate, may be you won’t, but either way, it’s something else to read other than the numbers we all obsess over each day or another story about a beloved person passing away, or the schizophrenic ever-changing messaging from our administration, or a small business going under, or another friend losing their job.

It’s important to note that as I write this, I’m sitting on my comfortable couch, healthy, and listening to Creep by Radiohead play in the background. The heat is on, my youngest son is singing along to the Zombies 2 musical in his room, my oldest is playing Minecraft while Skyping with a friend as she plays in tandem. My husband is exercising in the basement, while the dog is slobbering all over a bone, dashing around madly trying to bury it. The cat is drifting in and out of sleep on my son’s bed. There is food in our refrigerator, we’ve just scored some 1-ply toilet paper after 9 days of searching, and all the laundry is done. We’ve just returned from a 3 mile walk in the brisk Spring wind having picked up Robek’s smoothies and Dunkin’ Donuts on our way back. It’s important to mention this because it doesn’t sound like an awful day does it? And that’s the point of typing this tiny bit out. Today is Saturday, April 4th, 2020, and today is not a bad day in the small world of our family right now. This is one of many observations during this pandemic- there are good days and there are bad.

Personal Stories

More so than the news spitting out the numbers every hour, I’m drawn to the personal articles of those affected and what they’ve endured. As I mention right on the landing page of this blog’s website- it’s through stories that we all are connected. Never have I found this to be more true than a time like now. Of all the articles I’ve read over the last month, it’s only two that stand out to me the most. The story of the 39 year old healthy father who was dropped off by his wife and daughter in a second attempt to be admitted to the hospital after falling ill. After pulling up to the hospital drop off, he got out of the car and walked into the hospital. His wife and daughter went to park the car. The hospital went on lockdown and his wife and daughter could not enter. They never saw him again. I’ll never forget this story or the hard cry I had, the first time I really allowed myself to feel whole heartedly this crazy mix of emotions that a lot of us don’t really know what to do with.

The second article that daggered me right in the heart is about the mother of six, being treated for breast cancer who contracted COVID-19. Because her children could not be with her in the room while she passed, a nurse placed a walkie talkie next to her pillow and allowed each of them to say their goodbyes via a tiny black device. Another story I will never forget.

The Giving

During this dark phase of our lives, it’s easy to get sucked into the negativity, the despair, these gut wrenching stories of death that I mention above and let it seep into your psyche, your day, your tone to your spouse, children, and family. It’s crucial for me to say to you, try your absolute hardest not to allow this to happen. It’s happening to all of us, I sure as hell am guilty. But I’ve got some news that will offer you a hand to grab and yank you from the dark of this crazy emotional mosh pit. Search for the positive stories. There are so many. People who are on the ground doing some really serious giving in some incredibly ground breaking and creative ways.

I am extremely fortunate in that my day job allows me a front row seat to this seriously uplifting good stuff. We assist private foundations in activating their philanthropic missions. This means we’re helping process the grants these wonderful folks are pushing forward. It allows me to listen in on webinars about where money is needed most and how we’re going to get it there. Meetings topics are made up of how to help the most people in a community at a time, what other foundations are doing so that others can join along or be spurred on to create their own program, and how charities have learned from past pandemics (AIDS, H1N1, Ebola).

We’re watching the awe-inspiring action of one foundation that created jobs for furloughed restaurant workers by ordering the raw materials to assemble plastic protective face masks and package them, which will then be delivered to NY hospitals. It reaches more than one group in a positive way; it gives an income to those who need it, while providing important protective gear for the hospitals that are desperate- it’s a positive domino effect.

This is just one story of 100’s. There are so many touching initiatives everyday people, charitable organizations, businesses, and celebrities are taking. If you’re interested in reading about some of them, or simply want to feel a boost of much needed endorphins, check out this article. If you’d like to know which charities you can donate to – read this here.

The Silence

This is one observation I am stuck on- the silence is deafening. The needle on the record just will not grasp one of those rings on the black vinyl and blurt out the damn tune.

Let me give you 4 examples.

–Text messages to nowhere. I sent text messages to nine friends all on the same day, over 2 weeks ago. The messages were similar in nature: “How are you and your family doing?”, “I hope you are OK, am thinking about you. Let me know.”, “I miss you, know that I am thinking of you, how is everything going?” Since then, only one of those people has replied. I don’t know what this means, but I’m exhausted from over-analyzing the reasons why. It just plain hurts, but I am sure it likely has to do with shock and adjustment. I’m trying not to take it personally, but it’s hard not to.

–Crickets on work calls. Team calls have suddenly become eerily quiet. Questions from those leading the calls go unanswered and I squirm in my basement office desk chair trying to avoid being the only one to answer each question.

–Evening walks. With less cars on the roads and no visible humans in our neighborhood after dark, the silence is quite beautiful in a way. This version of quiet is the only version I find comforting these days. It is peaceful; meditative.

–Middle of the Night Alertness. Anxiety over all of this has come in the form of sleeplessness for many of us. I’ve become accustomed over the last few weeks to the middle of the night hum of quiet in my house. Will someone break in for toilet paper or soap? Will people start looting? Just a few bedtime conversations my husband and I have had before comfortably drifting off to sleep. Or not.

Electronic Connection

How much more are you having actual phone conversations now that this virus has invaded our lives? If you’re a Xennial like myself, I would venture to guess you’re having a lot, if not as many as you had back in college for the first time in 15 or so years. If you’re a Boomer, you’re also likely having more phone conversations than you’ve had in a while. If you’re a millennial or Gen Z, maybe it’s a very new thing for you and you’re adjusting.

Personally, I’ve noticed I’m enjoying the shift in hearing my friend’s voices who don’t live close by. Last week, I spoke to a friend from 5th grade who lives with his family in France, 2 long time friends in Chicago, and a friend in Cincinnati. 3 of my local friends have called to check in on the regular. This is not the norm for me at all. There is something to be said for that deep personal connection that radiates from knowing someone cares enough about you to pick up the phone and vice versa.

With WiFi and internet fluctuating in and out, conference lines and video chat calls dropping due to overloaded servers, we are in a state of flux. I am realizing just how lucky we are to have a little thing called the Internet. Imagine how much worse this isolation would be without it? All of us able to work from home would not have jobs, mass communication and connection via social media to know we’re “in this together” would not exist, and let’s not forget school as well as entertainment for the kids. We’d rely on the weekly paper for all of the stories and updates, and the TV news which is overloaded with only negative info it seems. For people like me who have streaming services instead of cable, we’d be screwed regarding any form of TV watching. Forget online banking and shopping- bye bye Amazon. We would buckle as a society. We are interwoven as one with this technology and are therefore dependent upon it. Thank you, internet. You are appreciated Vinton Cerf and Bob Kahn.

The Ripple Effects, The Future

A friend recently said to me, “Think about when we all go back to our jobs, school, and life. Will we all stay in our silos? Will people still remain distant from one another? Will they be hesitant to go back to the way it was now that we’ve instituted this “new normal” for however many months?” She also raised a really valid point about how so many people already have trouble with organic socializing due to social media, text as a main method of communication, less outdoor time. This isolation and social distancing may have only exacerbated this phenomenon.

We obviously hope not. Is it wishful thinking that we hope the reverse will happen and the people of that generation will gleefully sprint outdoors sharing in tree-climbing contests, double dog dares consisting of “how long can you go without looking at your phone?”, along with going back to the days of mall and Taco Bell parking lot hang outs? I suppose we’ll find out when these measures are lifted whether or not this perpetuates the issue, or in a reverse psychology maneuver – solves the issue.

What is the near future looking like for farmers?I’ve recently read articles about the farmers whose migrant workers are stuck in Guatemala, unable to come over and pick the crops that are soon to spoil. Will there be a shift where jobless Americans step in and pick these crops for much needed income, resolving the issue of crop waste? Will the farmers sell off only half their crops because closed restaurants are not buying? These are the ripple effects we have yet to see, but will experience very soon.

Then there’s the perpetually sick and poor. For the those who don’t have COVID-19, but who have cancer, AIDS, Lupus, MS, ALS, and auto-immune diseases, how and when will the blood shortage, and possible drug unavailability cause them to suffer and possibly pass away?

Or how about the overworked staff and overcrowded hospitals? What about their mental health? Also, I have heard so many stories of sick people being turned away from receiving care only to show up again and beg their way to being admitted. Will standing physically in front of them, demanding care be what it takes?Will this become the new norm for receiving medical care? If yes, how long will it last, and how many will be sent home due to overcrowding only to perish?

Another ripple effect occurring is shelters having to close due to the proximity of people putting everyone at risk. Many of them must be fed via a curbside pick up and can no longer eat inside. I was on a call recently, and they mentioned to put your arm out in front of you and then out to your side. Did you touch a person? How many? If you ask this of a homeless person in a shelter, their answer is often 5 or 6 people. So the question is, where are these displaced people going during this awful time? The Salvation Army is opening up for them to shower, but finding places for them to sleep is becoming a deeper, more concerning issue.

Now think on a broader scale about the poor in terms of third world countries. This virus will devastate them. How will they come back from this? What will the future look like for them?

These ripple effects are what’s keeping me up at night. The stuff six months down the road that none of us ever thought of.

Home schooling

I am thankful we chose to live in a town known for its good schools and family friendliness. Because of this, online learning was set up in a matter of a few short days for our children. If students did not have devices to learn on, they could simply go to the school and get one for free. If there were students who depended on school lunch, they could go to the school and continue to get their lunch, and now dinner as well. These are amazing offerings to our diverse community and to have them at the ready- is something to be really grateful for.

So….homeschooling. I have learned I’m not patient when it comes to my first grader arguing with me about whether or not to do his work. I’m not calm when he begins his writing assignment by using the whole page to write the first word of his story – just to push my buttons. And I’m certainly not even-tempered when my boys start to bicker for the umpteenth time of the day, while I’m on a client call quickly pressing the mute button to run upstairs and reprimand them. Homeschooling while working is a challenge. Homeschooling and trying to refrain from screaming while doing so is an even bigger one.

I’m thinking about the void that’s been left in place of my kids’ activities. No Variety Show, no school play, possibly no 5th grade graduation. This year is my sons’ last time being in the same school at the same time. My heart breaks even more for all the kids in general, especially Seniors in high school. These are memories that have evaporated before they could exist. Let’s hope they can be rescheduled somehow, some way at a later date. One can hope!

My 10 year old said to me the other day that it’s been nice spending all this time together. This was a ray of light in my day, obviously. This was one of the good moments I am definitely putting in my back pocket. It was at the end of a day where my patience had run razor thin multiple times and I had thought “There’s no way they’ll think back on this time and remember anything pleasant. Maybe they’ll only remember me yelling.” I guess all the walks, board games, and karaoke is outweighing the arguing. Again, trying to be hopeful here.

My 7 year old says he hates being homeschooled. He hates a lot of things right now. We happen to not use the word “hate” in our house, but I’m trying to be a supportive mom and allow him to feel all the feels he wants and if he wants to hate everything right now, it’s fine by me. Let that anger out my little dude. We’re all feeling a wide array of emotions, who am I to stifle his? At the same time, he’s hugging me about 100 times a day and I’ll take gladly take it. Like I mentioned, all of our emotions are all over the place. It’s a pretty consistent theme.

The Absence of Medical Care

My husband is a chiropractor, he’s seeing much fewer patients of course, but of the ones he’s seeing, they are very open in their gratitude. They’ve mentioned they don’t have anywhere to go to get treated. Some have gone to the ER only to be turned away. Other doctor’s offices have closed that they see regularly for pain management. This reminded me of what the Red Cross attendant said as she prepped my paperwork prior to my blood being drawn. She said: there is no pause button for pain, suffering, and disease during a pandemic.

For this I’m thankful my husband can provide a service to others that offers pain relief during a time when they have little to no options in terms of where to go for care.

Travel and Celebrations

I traveled to my cousin’s wedding in Alabama on February 29th and flew back the next day on March 1st. He and his wife must feel as though they’ve dodged a bullet, because just days later is when this took off into an unknown of epic proportions. It’s surreal to think of all the weddings, proms, births, birthday parties, and celebrations in general this pandemic has impacted and just how fast everything changed.

On March 13th, my sister and her boyfriend got engaged. I was over the moon for them. I was also scheduled to meet her man for the first time the following weekend. My flight was booked and I was stoked. That meeting, of course did not happen. With everything going on, we don’t know when we’ll get to meet. But it’s one of the many things I am looking forward to when isolation rules are lifted!

It also made me realize it will be a year in May since I’ve seen my sister and 10 months since I’ve seen my mother. This means my kids have not seen their Aunt and Grandmother in way too long and is a stark reminder why we shouldn’t have too much time pass before we see loved ones who live far.

The Idea of A Loved One Dying Alone

If someone I love does get COVID-19 and becomes gravely ill, I’ve thought a lot about what I will do. I would fly or drive out to be with them during their last days. It would be traumatizing and haunt me for life if I did not do this. If it boils down to a walkie talkie so be it. They won’t be alone if I can help it.

For me personally, I firmly believe that is the worst part of this pandemic. The unbearable reality of being alone while taking your last breaths. Words left unsaid, hands left unclutched, leaving this world in lonely silence. It is why it is so important to call, text, and reach out now, while we are still able, while the people we care for are still here.

The Bright Spot

I convinced my husband (after three years of begging) to build the kids a treehouse! This is SO exciting. I was able to do so by telling him that I would just go ahead and build it. Who knew the idea of my trying to use a circular saw would have that effect? My kids are so happy, and we all have something to look forward to in the short term.

These are my many observations 3 weeks into the madness of this pandemic here in the U.S. I hope you all stay healthy, find small things throughout isolation to help you stay sane, and you feel a sense of togetherness while we are separated. Keep living, continue connecting with others in ways that are safe, and remember, this too shall pass.

–

Sneaky Little Bastard- When An Autoimmune Disease Rears Its Ugly Head

This July I turned 40, and the entire month was a dream come true. Actually, let me rephrase that. The entire summer was a dream come true. We packed in so much with the kids, and no doubt, spent more dinero than ever before. But life’s about memories, not money, so I’m honestly not fretting as much about the expenditure part. With turning 40 comes an awareness of sorts. Looking back at your experiences and choices reflectively, as well as peering out toward the future wondering what it may hold.

At my 40th surprise party, I had the most interesting conversation with my friend’s husband. He mentioned how and why the 40’s are our absolute best years in life, and to acknowledge this, because my 50th would feel very different. He had a smart hypothesis for this-mainly being that our health will surely begin to decline at the age of 50, and without a doubt our bodies will not be able to work in the same reliable ways. It was truly an enlightening and lovely conversation and I’m surely not doing it the justice it deserves here in this blog post. He struck a very poignant chord when he mentioned the importance of good health. We cannot partake in and experience much of anything, when we’re not feeling well. Fortunately, in my 39 years on this planet, I hadn’t had to think much about my health, and as a result, completely took it for granted.

Not only did I take it for granted, I think I tempted the universe with the hashtag I posted the day after my birthday in 2018: “whatyougot39?” Because the universe was like: You ’bout to find out!

Just a few hours later, on my son’s birthday, I would come down with an infection that would last two weeks, with a few days of health in between before the same illness struck again for another 2 weeks. I became suddenly ill with what felt like a UTI. But it felt stronger and more painful than any previous UTI I had ever had. After many trips to the same doctor and being put on a 3 day dose of a weak antibiotic, my sickness became a raging inferno of pain in the kidney region. With no improvement after 10 days, the doctor refused to change my prescription to something stronger. She said this was her decision simply because nothing was showing up on my urine culture (this is common with people with IC). She also thought I might have kidney stones or appendicitis. After passing out at the radiology center and being told she would not put me on a different medication, I went to someone else who immediately put me on a much stronger antibiotic, and smartly told me to see a urologist stat.

Everyone knows that 10 days of a UTI left to its own devices is like giving it a free pass to cuddle right up to your kidneys and then smother them. It was no surprise that I had a kidney infection. But what was the cause of this? How did it come on so suddenly and with such fervor? The urologist did a cystoscopy, and confirmed my bladder was quite inflamed. He told me to finish my meds, cut out coffee for one week, and call him if I began to feel better after taking a break from coffee.

One week later, I felt back to normal thanks to the stronger meds and ditching of my fave drink. The doctor said, I’m willing to bet you have IC (interstitial cystitis). I’m going to send you a sheet full of what you cannot eat because these foods cause what’s called a “flare up”.

“OK, great! How do we cure this?” So cutely positive I was. P.S. there isn’t a cure.

What is interstitial cystitis? This is an inflammatory disease that seems to go after the mucous membranes, and for whatever reason mainly attacks the bladder. The lining in the bladder is compromised thus allowing toxins to seep in. It is set ablaze when the body is fighting off an infection, or sometimes, when I’ve simply put the wrong food or drink in my mouth.

Last fall, I was afraid to eat much of anything. I cut out all of my favorite things: coffee, salsa, fruit, wine, seltzer, juice, tomatoes, pizza, chocolate, artificial sweeteners, and basically anything that has acid or caffeine in it. While I missed my chips and salsa and coffee SO MUCH, I felt so good and began to realize I could contribute in a huge way to my own health by watching my diet. That was worth a lot.

It also gave “cheating” on my diet a whole new meaning. It meant feeling like I had the flu the next day and sometimes for up to a full week. Inflammation in my arms and legs, my neck, and my bladder. It meant feeling so tired I could not keep my eyes open. Instead of planning what fun activity I could be doing with my family, I was more often than not daydreaming about sleeping, so I could avoid feeling any kind of pain. This is why I was thankful I only had a couple of these flare ups since I had been diagnosed last August.

Also, imagine what parenting with a hangover feels like, except it’s the worst hangover you’ve ever had, and it lasts for days. There’s no pinch hitter, there’s just you. Good times.

Everyone’s symptoms are different and yet the same in some regard. Medical professionals don’t know a ton about it, although it is not an unpopular disease. Most of what I have read and heard from my doctors is it is centered around the bladder. It makes you very susceptible for infections. For me, this is just one small piece to this very painful puzzle. It is different for everyone, some have it severely, others only from time to time. Coincidentally, my mom was diagnosed a few months before I was, and one of my friends from junior high also has it. You learn to join Facebook groups and lean on each other for tips, tricks, and support.

Just when I thought I knew of every symptom that could occur from IC, I was introduced to something new. A week ago I woke up and felt like I belonged in a COPD commercial. Breathing felt really tough on top of the fact that I had a UTI. It went from 1 to 100 in only 24 hours time. Everyone’s body is different, but I am not stranger to infection (thank you 8 bouts of mastitis and one nasty infectious cyst in my back), so I can tell immediately when an infection is there, and when it’s serious. It’s the same core symptoms for me:my feet feel like literal bricks. My legs feel like I’m walking through cement, my arms are roaring like I’ve just bench pressed 100 lbs 3 times over, my back feels like Jeter just hit a grand slam against it, and my head is throbbing. My eyes and throat are sandpaper. This is part of the inflammation- all the mucus membranes suddenly become like tiny deserts. However, this time, the disease went after all of those things plus my lungs.

Fast forward to better antibiotics, anti-nausea meds, ibuprofen, and a regular inhaler, and one week later I’m almost back to normal. When I saw my doctor, he explained succinctly why I felt like I was dying from this infection. You have an inflammatory autoimmune disease, Amber. So your organs and limbs are always simmering with that inflammation. Now introduce an infection, and you’ve just set your insides on fire. That’s why it’s difficult to walk, breathe, and think. The three asthma attacks you had that first day of the infection were due to the IC . The inflammation doesn’t just stop at your limbs and bladder, it went to your lungs this time and it feels serious and scary, but with the right treatment, you WILL start to feel better.

I am sharing this story reluctantly. Being seen as sick is not sexy. I pride myself on being strong and this is making me uncomfortable just by writing it, but I feel compelled to do so anyhow. I’m 40 now and owning every part of who I am is important for me. I demand it of myself now.

Part of me has changed whether I like it or not. There are days that I wake up and I don’t want to move because I don’t feel well. There are days I have to pick up my kids from school and smile at people when I feel like I shouldn’t even be out of bed. I want to be the me that was always up for an adventure, energetic, and healthy. And, frankly, it pisses me off that I can’t always be that. I repeat this mantra when I haven’t gotten out of bed for 4 days THIS IS NOT WHO I AM, THIS IS NOT WHO I AM. Funny enough, having this happen also opened my eyes and made me look at everyone else differently.

I used to think to myself, wow, that person is always a grouch, or WTF? Why does she NEVER smile back, or God, that person is so short/cold all the time. Now, I wonder if they are in physical pain? Maybe they are suffering in some way-mentally, emotionally, physically? I feel guilty for having judged them. Maybe they legitimately feel like crap all of the time, and I am lucky enough to feel like crap only some of the time.

On this very topic, about 12 years ago, I worked with a woman who was a single mom in her mid-thirties who was always talking about how sick and weak she felt. There was just one strange thing- she never looked outwardly sick to me. Everyday she complained in confidence to me about how ill she was, how she did not know how much longer she could keep coming to work. She said she had an autoimmune illness and it affected mostly her bladder. She called out sick almost every other day. She broke plans whenever we tried to get together outside of work. Two of her friends at work would complain loudly about being blown off by her or vowing never to make plans with her again. I went out to dinner with her one night only to end up calling 9-1-1 because she collapsed on the way back from the bathroom. A few short weeks later, she quit work due to her illness. I never heard from her again, and I never tried to contact her.

I am ashamed to admit this, but I didn’t really believe that she was ill. This was purely on the basis that she did not ever “look” sick to me. I was frustrated with her, I felt she was making up her symptoms for attention, using it as a crutch to bail on people and constantly complain. I realize now it was my own pure and total ignorance as to why I felt this way toward her. Autoimmune sicknesses are often wreaking havoc on the inside, not necessarily visible on the outside, and folks are just sort of supposed to deal. Life doesn’t pause when your body decides to attack itself, and since there is no cure for most autoimmune diseases, that is exactly what you do. You keep going and do what you can to fix the symptoms.

After remembering this, I wanted to contact her. I wanted to see how she was doing after all these years, and if she was able to go back to work. I contacted a mutual friend to see if he had her contact info, and he also never heard from her after she left the company. I want so badly to apologize to her, because while I never said to her that I didn’t believe her, I’m sure she could feel it. All these years later, I realize that this illness I have, could very well be what she had. Part of me wonders if this is karma biting me right on the ass!

Health is everything. I know those of you reading this are just like 2018 Amber on July 13th, taking your health for granted and shouting at the universe – What you got? Bring it! I’m telling you, health really is EVERYTHING.

You know what else? Health insurance is also everything. And…I happen to not have it. Just in time for my first mammogram and for my first year of having IC. I hope there is change in this country in the foreseeable future making it so that our jobs are not tied to having good and somewhat affordable health insurance. The “least expensive” option through Connecticare for us was a $12,000 deductible with a monthly premium of $1100. That means we’d have to spend $25,200 before being covered. No thanks. When you step back and think about how getting a job with healthcare benefits dictates being able to have reasonable health insurance, and that our jobs and healthcare are somehow intertwined, it’s pretty nonsensical. Here’s hoping something changes.

I leave you with that to ponder.

Stay healthy my friends!

Second Opinions and Intuition Are Vital To Health

Many of us have been in a situation where a diagnosis completely missed the mark or we left the doctor’s office knowing the information we were given didn’t seem quite right. For some, questions have been left completely unanswered, and it’s resulted in their condition worsening. For others, obtaining a second or third opinion uncovered the correct diagnosis thus saving their life or improving their quality of life immensely.  It got me thinking recently just how critical it is for all of us- old, middle-aged, and young to be not only our own advocates, but our loved one’s advocates as it relates to health. Here are three scenarios that may help you to ask more questions of yourself, your loved ones, and your physicians.

Solving The Issue On Your Own

When it comes to our kids or loved ones, it tends to be easier as the observer to pinpoint what may be contributing to their health problems. Think about how one small change in someone’s food selection could benefit them if they were to discover they had an allergy to a food they often ate? Recently, my son was complaining of a stomach ache 3 -4 times a week. He’s never been formally tested for lactose intolerance, but I figured it out early on by process of elimination.  He used to cry and complain of stomach aches after he’d have cow’s milk in his cereal or drink chocolate milk from the time he was a babe. I also happen to be lactose intolerant myself, so I figured his chances of having the same issue were pretty good.

After asking him what he’s been eating recently to try to uncover the reason for all of his stomach aches, I came to realize it was in fact lactose related yet again. He would complain after eating Cheez-its, Goldfish, smoothies, milkshakes, and occasionally pizza. Since our kids aren’t always with us when they’re eating (school, after school programs, friend’s houses, etc.) it’s not always obvious what is bothering their stomach. Honestly, I was buying the goldfish and cheese flavored crackers and not thinking twice. The powdered cheese in those snacks must have been contributing to the issue. For the last week, he’s stopped eating those snacks and you guessed it, the stomach aches have completely ceased. If only every health problem were that easy to solve! Sometimes, we can actually solve health issues on our own.

Following The Commonalities When There’s No Diagnosis

Sometimes, our loved ones notice more than we give them credit for. Many years ago, I became very ill while on a business trip. I was having a lovely time at an event  party until the wee hours of the night, and while chatting with co-workers, I started to feel extremely tired. I took inventory of what I had eaten..mostly chicken wings. It didn’t help that I had also been drinking cocktails, so I assumed it was a bad combo of the drink and food choice. I called it a night earlier than I had expected and headed back to my hotel room.

That night, I seriously thought I was dying of food poisoning- the pain was so bad. I started vomiting around 3 a.m. and didn’t stop until it was time to check out and head to the airport. Everyone assumed I had had one too many celebratory drinks, but I knew there was no way this was a hangover-it felt different. I ended up in the hospital for two days following my return. They discharged me and said they thought it might be pancreatitis. It was pretty much an unknown diagnosis.

What my then boyfriend (now husband) pointed out, was my symptoms seemed to weirdly mimic the same ones I had about six months prior after a meal at a hibachi restaurant. Following that meal, I had also landed in the hospital for a few days, only to have been discharged with no answers and the doctors scratching their heads.

We visited that same hibachi restaurant a few months after I returned from that business trip.  And again, this time even faster than the last, I could not even walk to the car.  I was weak, sweaty, and vomiting profusely only 10 minutes after eating. My mouth felt funny and my tongue felt puffy, which was a completely new symptom. I went to the ER, spent the night, and again, was discharged with no answers. Again, my boyfriend spoke up about what he noticed. I should add here that him being a chiropractor (who has studied a thing or two about the body) also helped. He had figured it out.

“You’re allergic to sesame!”

He pointed out my reaction was much more severe when it was in oil form. He had to be right! For as long as I could remember I would get stomach aches when I’d eat sesame bagels- I chalked it up to my lactose intolerance because of the cream cheese. Low and behold, it was the seeds! That business trip I had been on- I had eaten chicken wings lathered in sesame oil and seeds. The hibachi place we had dined at had cooked our meal in sesame oil.  Also, it answered questions for me that went way back to my youth. There were these crackers that our neighbors always put out at parties called Sociables. I would eat like the whole box – I loved these crackers so much! And EVERY time we went to their parties, I wound up in their guest room crying and writhing pain until the wee hours of the night. We could never figure out why my stomach hurt so bad at their parties! Turns out,  those crackers are sesame crackers. What an a-ha moment!

Three visits to the hospital and none of them resulted in answers. My husband had figured it out just by going through the foods I had eaten each time- and drawing a conclusion based on the most common denominator. Take note that with each allergic reaction, the symptoms worsen. Further down the road, a year or so later, I ordered Chinese takeout and double checked with the staff to see if they had cooked it in sesame. They confirmed they did not. Three bites in and it felt like I had swallowed gasoline. My throat felt like it was closing and the stabbing pains started in my stomach. This time, we avoided the hospital and waited it out to see if it would be over by morning. Thankfully, it was ( but I DO NOT suggest waiting it out- the pain was unreal).  If you have these kinds of stomach aches that land you in the ER, and have also had doctors scratching their heads, think about getting tested for a food allergy, or going to a specialist to run further tests. This, for some reason, had never crossed my mind or my parent’s minds for that matter, when I was young. Sometimes the answers are literally right in front of us!

When Intuition is Critical And So is A Second Opinion

Many of you are caring for ailing parents. You’re driving them to their doctor appointments or tagging along to make sure the right questions are being asked. This is what one of our friends was doing with his father when his eyesight began to decline in one eye, along with the white of the eye turning very red. They started with a top neurologist at a local hospital and were told it was allergies. When the eye began to turn out and they returned, they were told it was an auto-immune disease. The CAT scans continued to show nothing abnormal. But something wasn’t adding up. His father’s teeth started to ache, which lead them to having three teeth removed, and the medication he was on didn’t seem to be helping the symptoms at all. When he  began to see his father’s overall health rapidly decline over the next few months, he sought more answers. He decided to take him to a specialist at a university hospital- a neuro opthamologist. They had a special CAT scan machine that looked at the eye in ways that other CAT scans could not. And this was when they discovered there was a cancerous tumor that was crushing the sixth nerve. The sixth nerve is a cranial nerve that is responsible for the outward gaze. They also discovered that this cancerous tumor had stemmed from a melanoma that resided on his cheek and had metastasized to this nerve behind the eye. It was a serious diagnosis and treatment had to be aggressive to save his father.

When asked what his advice is for those that are currently searching for answers, he says to opt for university hospitals- not necessarily your local hospital. University hospitals study thousands of diseases and have more specialized advice, machines, and treatments to suggest versus a local hospital. Your local hospital studies less diseases at a time and may not have the answers because they’re not exposed to as much info. You are better off going there for things that aren’t as complex. It’s also a team dynamic at a university hospital. Why? Because a university hospital is a teaching hospital. All different kinds of doctors are invited in to give their opinion and take a look at what is going on. You’re not getting the services of one doctor with one opinion. Another helpful piece of advice he gave was making sure to track down a specialist.  When something quirky is going on with one specific area of the body, it’s best to go to a doctor that specializes in that area of the body, rather than your primary care doc. The clock could be ticking on your loved one’s health when you’re not getting the answers you need from the right source.

Too often we all hear stories about people putting off going to the doctor only to later find out something is gravely wrong,  or getting a misdiagnosis and being put on the wrong medication, or having no answers with worsening symptoms, etc. Always continue to search for answers for yourself and your loved ones, because when you really peel back all the layers of life that we all stress about, there is truly nothing more important than our health.

 

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