Oof. My plan had been to start this blog on October 1st. But, as life goes, I was sick and dealing with family stuff, and suddenly it’s October 15th. I caught a nasty virus while visiting my dad, who has been in the hospital for 40 days today. It’s been a rough 40 days, but we’re all still here and fighting.
I really should have been wearing a mask while at the hospital. I get sick way too easily, and then it seems to make all my other problems worse. But my dad has hearing loss from years of farming without ear protection and he reads lips. So I need him to be able to see my face. It’s been a little over four weeks since I got sick and I’m still fighting it, even having to go to the ER unable to breathe. What a mess. It was “just a virus,” but when you’re weak already everything is a big deal. So if you need to wear a mask, just do it.
I’ve been feeling pretty smug about not having to use my cane for WEEKS now. So what happens today? I wake up and can feel it’s out of place. I tried hobbling around without the cane (not from vanity or pride, but because I need both hands!) and I almost fell. And that’s how today became a cane day. Thanks, Ehlers-Danlos Syndrome!
October is a busy month, and even though it’s almost half over, there’s still so much to do. I have several doctor appointments lined up, an important anniversary, I start physical therapy for my EDS soon… And lots more! Stay tuned. 📺
The CDC has made recommendations to wear masks when in public. Since more and more people are being called back to work, you may be asked to wear a mask while at work. If you’re still new to wearing masks, maybe this post will help you out.
Welcome to the masquerade!
I’ve compiled various types of masks and this is my casual review of them. This is not medical advice and not a debate on should you or shouldn’t you wear a mask. Obviously, I believe you should, or I wouldn’t be sharing my thoughts on these styles. I hope you’ll wear one the next time you go out, but if you don’t, that’s your business. Just stay far away from me.
First, why do I wear a mask? Well, pre-COVID-19, I’ve had to periodically wear a mask for the last six years. There are certain particles that irritate my lungs, and when they’re in the air I struggle to breathe. By wearing a mask during these times, I’ve reduced the number of bronchial and lung infections I get and have actually improved my lung function! Hooray!
For the general public, though, the use of cloth face masks is to help slow the spread of the novel coronavirus that has caused our current pandemic. I think the science is pretty cut and dry. You wear a mask to protect others in case you are sick and don’t know it or if you are a carrier. Your mask acts as a shield, catching your potentially infected saliva before it can land in someone’s eye or on their lip. Gross!
Normally, I wear a Vog mask that has a handy vent. It’s so wonderful, I love my Vog mask. I was able to attend an important event that had smoke used for ceremony and my Vog mask totally saved me from a massive asthma attack that day. I wore the mask for three hours! But, recommendations for the current pandemic are to avoid using masks with vents, as your saliva could easily escape, and then you’ve unwittingly spit miro particles into a cashier’s eye. Well, we don’t want that. I’ll save my Vog for allergen days.
It’s really simple to make. When my dad was still in the nursing home and they went into lockdown, he made one of these and wore it when the nurses came in for checks. (He’s home, now, and we’re so thankful!)
I would only use this mask if I had no other options (like if I was locked in a building that had limited supplies). It’s easy to breathe through and seems to get the job done. But there’s one main issue I had, and it’s related to my Ehlers-Danlos Syndrome. My ear keeps folding over. You can kind of see it in this photo. If I move my mouth at all, it snaps right off. I went to my EDS support group to see if anyone else is having issues, and yes, many are. EDS effects our cartilage, so a lot of ears are bending right now. I feel you, EDS family!
Next up, the pleated fabric mask with ties:
These are super popular. They’re easy to sew and don’t require elastic. While I like the facial coverage of this mask and the breathable quality, there are two things that bothered me. Let’s look at the ties. They’re ribbon, very sturdy and a good length. But I’m always getting my hair caught. I try to keep my hair pulled back when wearing a mask, but still found myself pulling out hair. And then my glasses fogged up quite a bit.
Overall I like it, but I don’t love it.
Three different masks from one company:
A company that I’ve purchased vegan purses from started offering masks made from recycled materials. Interesting, but effective? The pink one is recycled Jacquard on the outside and recycled organic white cotton knit on the inside. The other two are recycled organic cotton.
I really like the coverage of all three. The pink one is the best (plus it’s fancy in case I have to attend a less than ten person pandemic wedding!). There’s some fogging, but not terrible, and the loops don’t bother my ears. The loops are elastic rope with adjusters. The brown and white mask has a nose wire (great!) so I like that part. But both that mask and the brown one have elastic cord for ear loops, and you have to untie them to find the right fit for your face. It’s not awful, but if you have problems with fine motor skills, it can be tricky (thanks, EDS!) and the rope is like a hair tie, so it bends my ear (again, thanks EDS!) The brown mask honestly feels like a gunny sack on my face, so that’s a pass. But there are no returns on face masks, so it will be my 2nd to last choice.
If you’re looking for a “formal” face mask, the pink is a good choice (they also have ivory and teal), but there are better options for every day use.
A custom made Olson mask from a friend:
The Olson mask is named after 1930’s nurse Lyla Mae Olson, and has been modified and requested by UnityPoint Health. This mask is similar to the previous one I shared, but it has a more tapered nose. This mask also includes a filter pocket and a nose wire. It’s three layers of fabric, but easy to breathe through. The wire helps keep my glasses from fogging over. The ear loops are a wide elastic, which doesn’t immediately bend my ear in half. But it does if I wear it longer than a half hour. So it will be great for trips to the store, but hard to wear an entire day of work.
One of my top picks, but I’ll need a clip for the loops if I’m going to wear it all day. Bonus of having a custom made is I got to pick the fabric!
The Face Mask Extravaganza Takes a Sad Turn:
Another popular style, but one that’s harder to find now, is the pleated mask with narrow elastic loops. I ordered a few from a maker on Etsy and one of my cats attacked them. The only mask to survive was a camouflage one that I bought for my brother. It didn’t work for him, so now I own my very first piece of camo clothing.
I wore this mask just yesterday on my first trip to a store in MANY weeks. Yet again, the elastic pulled on my ear, but it stayed in place! The mask has two layers and a filter pocket, it’s easy to breathe through, it felt like good coverage. Minimal glasses fog. I hope to be able to fix up the other two, because I like this one.
I consider this one the “winner”:
Raygun came up with a great design, using thin ties that you can either tie behind your head or knot into ear loops. I knot them and this has been the absolute best option for my bendy EDS ears. Sure, it can feel like “a diaper on the face,” according to my brother (he’s not wrong), but they are easy to breathe though. Even without a nose wire, my glasses don’t fog over. There’s even a pocket for a filter. I love it all. I have two and bought my brother one. If they weren’t sold out again, I’d buy more.
The winner! 🏆
If you feel like making your own or want to read up on fabrics, check out this article:
Highlights and Trigger Warnings: Anxiety, Hoarding, Charlton Heston, Working from Home, Suicidal Thoughts, and Foreboding Graffiti
Today was my once a week trip to to the office to exchange paperwork. Then I had to stop at Trader Joe’s for toilet paper and a few essential items. After coming home from being with people, I just wanted to cry. I’m overcome with anxiety and fear that I’ve been exposed. But I’m sure I have, I’m sure we all have.
What makes COVID-19 seem to target some and not others? Why mild cases and then deadly cases? There’s so much we need to learn. For some, they believe it’s manufactured. Others, just nature taking back the planet. And some see it as biblical. Passover is starting in a few days and The Ten Commandments should be on TV soon, but ABC has not yet released the air date and time. Is the pandemic year the year they stop airing it? When so many are clinging to their faith, but also drawing comparisons and wondering if they should be marking their doors with lambs blood, where is Charlton Heston?
Working from home. What an interesting experience. I’m very grateful to have the opportunity for as long as the work continues. There’s the possibility it will dry up and that I’ll get furloughed. Then what about health insurance? That topic wasn’t covered in our Q&A packet, but it is a concern. I have regular health issues that I need to keep up on, but what if I get the virus? More anxiety creeping in.
Since one of the symptoms of COVID-19 is the loss of smell, I’m thankful every time I get a whiff of hog shit from this open window I’m working next to in the kitchen. Mmmmm, mmmmm, good. At least the farmers are able to continue with spring chores and planting. It’s actually nice to hear the birds outside, catching each other up on their winter adventures.
Isolation hasn’t been that bad for me. Yes, I do have short contact with work once a week, but I do live with a family member, so I’m not alone like so many others. Also, I’m not missing “life” in the world. Mostly because four years ago I pretty much said goodbye to living in the world, except for work. Like so many others with a chronic illness, I gradually said goodbye to friends and activities I loved. It wasn’t anything dramatic, just a slow exit without fanfare. It wasn’t hard. I remember the last time I hung out with a friend “group.” Two of them were surprised I “actually showed up” and asked if I was I sure I didn’t want to stay home. Not fond things to remember as I drove home, realizing I hadn’t been wanted in the first place. So I stopped making plans on my own, and to no surprise at this point, I didn’t get any calls or invitations.
Do I think we’re living in the movie 12 Monkeys? Maybe…
One reason this pandemic brings up so much anxiety is the possibility of death. I’ve never been afraid of dying. Sure, I’ve had panicked thoughts of, “Don’t take me now, I have things to do!” But I guess death has always been an understood fate. My problem with death and the pandemic, is for the last two years I’ve been actively working on staying alive. For probably the first time ever. I’ve confronted my suicidal thoughts through therapy, I have a good grasp on them, and I’ve been able to push those demons aside. And now I want to live. So what happens? A global pandemic that’s picking off the elderly and those with chronic illness/underlying conditions. It’s like slapping a big bullseye on my back. And then Running Man seems to be on TV all the time. Thanks, Arnold.
One day, when this is all over – and maybe it won’t ever be – we need a day to celebrate all the janitors, grocery store and pharmacy workers, food establishment workers, and all medical staff and front line workers. A day of rest for them while we give them cards and flowers and ticker tape parades.
Stay safe, keep your distance. Keep your work ethic up, go for walks, watch sunrises and sunsets. Just don’t do those things as a group.
Happy Leap Day and Rare Diseases Day! While Ehlers-Danlos Syndrome doesn’t seem that rare to me – I know several people who have it – it is considered a rare disease. So here’s a rundown of my most recent ER visit that happened yesterday. Also, I’ll give you an easy exit before the bra story if you want to bow out.
Trigger Warnings – Doctors not listening, discussion of dislocations, awkward bra discussion.
First, a little backstory. Remember, this is not medical advice and you should always consult your doctor if you have questions.
Three weeks ago I slipped while getting into the shower. I fell pretty hard, but caught myself with my right arm. Great, because I didn’t crack my head on anything. But also horrible, because I pulled a muscle in my right shoulder/chest area. I treated it the best I could, but finally ended up in Urgent Care a week later. The nurse practitioner gave me muscle relaxers and told me to rest and ice or heat the area.
Well, I had an allergic reaction to the muscle relaxer. Because of course I did. I’ve had allergic reactions to 4 other prescriptions and 2 over-the-counter meds in the last year. So I tried to go on without muscle relaxers or pain meds (because they don’t give the big ones out anymore, I should be able to handle this with Aleve). A week later, I was in much more pain. My right chest muscles were super tight. I had to sneeze, but couldn’t even get a deep enough breath for a full sneeze. Instead, it felt like my ribs were splitting open in the upper right area. That night I caved and tried half of a muscle relaxer. I had another horrible reaction, but woke up feeling tons better. I went back to the doctor to tell someone that the pain had gotten worse, and I didn’t get anything new from the appointment. I was told to continue what I was doing and go back to physical therapy.
I made an appointment with PT, but it was over a week out. Welp, I didn’t make it to PT. I woke up Friday and it felt like a very large dog was sitting on my chest. After pushing through a few hours of work, it wasn’t better. It was very hard to breathe, so I used my inhaler and put a hot rice bag across my chest. Nothing helped. After going back and forth with myself, I finally headed to the ER.
We are taught to treat chest pain and difficulty breathing as serious issues. We are told to go to the ER with these symptoms. So why didn’t I just go? Well now our story begins.
Part of me doesn’t want to talk about this, because I’m still super irritated. The wait wasn’t very long and there weren’t a bunch of flu patients waiting to be seen, so all of that was fine. And everyone seemed familiar with Ehlers-Danlos! Huzzah!
Because I was having pressure in my chest and pain on the right side, they ran an EKG, which came back normal. My BP was high, but I was in a lot of pain.
I first saw the med student. He had gone over my last two appointment notes and seemed knowledgeable in what had happened, but had me go over my story so he could look for inconsistencies. I really appreciated his eye roll reaction when I told him I felt that I had split a rib. He asked what exactly did I mean by that, so I explained that when I sneezed it had felt like a rubber band snapping in my right chest, much like it had felt last year when I fully dislocated a rib on my left side. And that I equated this with cartridge ripping between two ribs – or, “splitting a rib.”
He felt this was his time to shine and oh so politely told me that most doctors don’t buy into slipping ribs and that wasn’t something they treat. I would be better off leaving and going to a chiropractor if an adjustment is what I was looking for. I did see black for a moment. I told him that was absolutely the wrong thing for an Ehlers-Danlos patient to do, and that I had gone to a chiropractor last year for my dislocated rib and ended up making it worse. Do not in any way send an EDS patient to a chiropractor and no, I don’t want you touching me.
He seemed really surprised and asked why I was there, then. (!!!!!) Because the tightness in my chest was new that morning and with the ripping I felt in my chest, I wanted to make sure I didn’t have a blood clot or had hurt my heart (aortic dissection is more common in EDS and I know I’d be dead by now if that had happened, but there are loads of other terrible things I could have torn). He said “oh! Well we can look at that.”
Are you f***ing kidding me? You have a patient with chest pain and difficulty breathing and you’re going to send them to a chiropractor unless they give you “just cause” for treatment?
He has me sit up and wave my arms around to locate the pain. Spoiler alert, it’s right where I pointed to. The real doctor comes in and seems much nicer. He asks me similar questions and we settle on yeah, it might be a blood clot, so let’s rule it out. More blood work is ordered as well as a chest x-ray.
While waiting for my results, the pain/pressure got worse in my chest. The nurse went and spoke to the doctor who decided I could have a shot of muscle relaxer. Luckily, I wasn’t allergic to this one. Everything for testing came back fine. Eventually the shot kicked in and the doctor returned to discuss things to help.
This is your chance to leave before the great bra discussion of February 2020.
First, he was prescribing lidocaine patches. Then, I need to continue physical therapy. Next, let’s discuss wearing the proper bra. Without looking at my bra, but presumably it had been discussed with him, he told me I needed to make sure I was wearing the right type of bra.
Hold up, because why did I think he had heard about my bra? Because it had been already been discussed with nurses and radiology. What’s so weird about my bra? It’s a bralette. No wires, nothing fancy, no metal of any kind. This one is made for bustier ladies, so it’s more supportive than something like a training bra. The nurses were going to have me remove it, but looked it over and said it was fine to leave on. When I went for x-rays, the radiologist thought it was fine to leave on. It ended up showing the plastic rings in the x-ray, so I had to remove it, but not a big deal. To any of us.
But the real doctor came in with his male med student and wanted to discuss my bra choice. I, um, passionately (not angrily but more than normal speaking voice) told him that the last year had been quite an expensive struggle with bras. Since fully dislocating the left rib last year, that lines up with my bra band, I have been searching for something that I can wear that won’t 1) dislocate that same rib again, because it won’t stay in, and 2) won’t push everything together to put pressure on my sternum, which was partially dislocated in July. A handy thing I’ve learned is once a joint pops out, it just keeps getting worse. Thanks, Ehlers-Danlos Syndrome!
He stressed that I should look for something more supportive, because less support puts strain on my ribs. I earnestly told him that yes, the past year had been difficult and expensive (bras cost a fortune!) and I had brought this up with other doctors. They seemed to think as long as I was comfortable it was fine. This bralette is comfortable. No, the doctor I’ve spent very little time with and who never actually saw my bra, decided it was causing problems. And since he doesn’t wear them, he told me to ask my nurse about them. You know, like I’m 12 years old. I explained that I was part of an EDS support group, where a lot of women complain about any kind of bra ruining their rib cages. He told me I should talk to them. Um, yeah. The only solution some of them have found is making their own. The doctor seemed to think this was a good idea. We stared in silence at each other for a few moments before I finally said, “well I guess I’ll get out my sewing machine.”
My mom shows up and I fill her in on my bra diagnosis while we wait to be discharged. The nurse comes in about fifteen minutes later. She’s going over my instructions and asks if I have any questions. Now at no point was I actually planning on asking her for bra advice, before I could stop myself, I said, “Yeah. The doctor wants me to ask you about bras. You know, like I’m 12.”
She was quite shocked and fumbled around for a response. She said she’d be sure to tell the doctor, in front of as many male colleagues as possible, that she had discussed bras with his patient. While she really tried to come up with a solution, I told her we really didn’t have to have this conversation. But, since the band can cause dislocations and certain straps have caused partial shoulder dislocations, she suggested a prescription bra. Yes, those are real. Yes, based on my problems, it seems I would qualify. Yes, I think this whole ordeal was ridiculous as did my nurse. I promised her I would write a detailed poem of our encounter.
To sum up, I’ll probably look for a corset, as some EDS women had had success with them. And Renaissance Faire season is right around the corner.
I’m talking about endometriosis here, and sh*t is about to get real. Consider this your uncomfortable warning. Also, this is a meme dump post (you’ll laugh at the pun later).
I don’t know how best to tell this, so let’s start with one week ago. Last weekend I was pushed physically more than I should have been. I was already very tired, but it turned out I needed new tires immediately and had to venture into the world to find them. I ended up having to walk around or stand for about 90 minutes straight. Normally, I think I could manage this. But I’ve been running on empty for a few weeks, slipped on the ice a few days before this and twisted my pelvis, and generally over the last few months I’ve been having a heavy feeling in my abdomen.
It started to feel like I was about to start my period. But wait, I had a total hysterectomy over two years ago… The feeling in my abdomen kept getting worse. But no. No! We’re done with this…? I found myself running (ok, limping because I’m having to use a cane right now) to the bathroom a lot. It felt like I really had to go, that something was about to happen, but nothing did. Except eventually the cramping started. The kind that doubles you over and causes vomit burbs.
Oh, I have not missed these days, and the feeling of familiarity caused panic. I know the hysterectomy wasn’t a cure – there is no cure! But I had banked on a few more years of mild symptoms, not a full on flare. Stupid endometriosis! I made an appointment with my primary care – two weeks out was the earliest available!!! – because maybe something else is going on. I’m not a doctor, I just spend my free time researching symptoms and trying to connect the dots. Luckily, a gift from God, there was a cancellation and I got in two days after I made my appointment.
Now here’s what we know. During the hysterectomy, my surgeon found endometriosis wrapped around parts of my colon. Since I do not have access to an excision specialist in my state, the endo was not excised. It was peeled off, leaving lesions. Meaning it was likely to grow back, but since they took my ovaries (awesome, right?), the expected recurrence rate was considered low for me. But what’s happening? My colon is slowing down, movement through them makes it feel like my intestines are being sliced open from way down deep. Very little is passing, and when it does, it’s so excruciating.
At my appointment, that was moved up two weeks, the nurse practitioner agreed it sounded like the endometriosis was back and that it was on my intestines. But she had no idea what the next step would be. That’s okay, I don’t expect her to know every little thing, and her student shadow did just tell me that I’m one of several “unicorns” they see in the clinic. I’m complicated, I’m rare, I get it. So I shared my research and we came up with a game plan.
First, don’t make the intestines work harder than they have to. Start taking an over the counter med to help things move more smoothly. Next, she’s getting me a referral to a urogynecologist, since they specialize in pelvic organs and I obviously don’t need an OB-GYN. Then, she’ll do her own research and see if there’s something else we can do in the meantime. I mentioned that what I had read suggests having a colonoscopy, since it will show narrowed pathways if the endometriosis is causing obstructions. So that might be upcoming as well. I also had the chance to explain excision of endometriosis to her and that we don’t have any specialists in the state. I told her about the letter I sent to the university hospital in October and that I haven’t heard back. She was disappointed and might follow up with them.
Just as a fun highlight of my “your endometriosis is probably back and we have no way to treat it” appointment, I also walked away with a referral to a university hospital allergist, a rheumatologist, and a new ENT. Because I keep having allergic reactions to an unknown source, I’m having bone pain throughout my body, and oh yeah, my uvula has stretched out and is getting stuck to the roof of my mouth.
I picked up this book this fall, at the suggestion of another Ehlers-Danlos patient, but I haven’t started it yet. Considering I had to call into work sick on Friday due to pain, it’s a good time to start reading it.
But, I’m keeping myself busy. Just ordered a new cane with roses on it and a new shade of pink nail polish. I didn’t even put it together that Valentine’s Day is coming up until just now. Happy VD to me!
Welcome back, gentle readers! I appreciate you and your patience as I get things rolling along here. Chronic illness can cause delays in your projects, such as I’ve experienced here, but it’s better to be late than to let things fall to the wayside. If you want to accomplish something, even if it’s small, keep pushing little by little. It might take you much longer than an “ordinary” person, but that’s okay. Because you’re extraordinary and goals are worth it. Keep shining.
For my first interview of this “Living with Chronic Illness” series, and for Cervical Cancer Awareness Month, I interviewed a cervical cancer survivor. According to Cervivor, a non-profit raising awareness of HPV and Cervical Cancer, more than 500,000 women worldwide develop cervical cancer each year. That’s a scary statistic for a cancer that is mostly preventable with a vaccine.
But today we aren’t going to focus directly on the cancer. Instead, we look at life after cancer and the effects of treatment on the life of a 37 year old survivor, Emily.
Emily describes herself as fairly healthy before cancer. It wasn’t until the year after cancer, at age 31, that she really began to have struggles. She still doesn’t like to refer to herself as “chronically ill,” but she’s working towards coming to terms with it.
“I’m still upset and angry and processing,” she explains, but finding a community of women with similar backgrounds through Cervivor, has given her a new outlet. She’s able to be a mentor and finds that helping others makes her feel less alone. It makes it “better to deal with on a daily basis.” Emily speaks at various events throughout the year and helps organize awareness events around the state of Iowa. She has also attended Cervivor School three times and has been featured in a few of their educational videos.
Why is she trying to raise awareness? To educate other women (and men, as HPV can cause cancer in both sexes) and prevent other cases like herself. Emily suffers from a number of daily ailments, all stemming from the radiation treatment. Her pelvic area was exposed to high doses of radiation and caused inflammation to everything in that area.
The immediate aliments that came on within months of post-treatment include radiation enteritis, which is usually temporary during treatment, but has caused permanent damage to Emily. She also experiences colitis and bladder cystitis. In the last year she was diagnosed with osteoporosis and feels “there will be continued effects down the road.” Only time will tell since as with any treatment, each body responds differently.
There is hope, though. In the last year she has seen some improvement and the number of doctor visits for her has decreased. Now, she only has 4-6 main annual appointments a year with various specialists, plus two “maintenance” visits to the Mayo Clinic in Rochester or to the local ER.
Currently Emily works a desk job at a non-profit, but that’s a far cry from what she was doing before cancer. After treatment, she found that her body could not keep up with the physical demands of agriculture field research. She was interested in working with corn and studying it, but she couldn’t keep up. After nine years of building a career in an area that had always called to her, she had to resign and begin a new chapter. One that was less demanding physically and that allowed her more freedom when she had to come in late due to being ill or dealing with pain issues. While it started out as a transition job, she’s still plugging away four years later, waiting for that inspiration to take her to the next chapter.
There are some things that are holding her back. It’s hard to figure out what to do next with your life when you’re busy figuring out how to survive on a daily basis. Her diet is very restricted, because so many foods irritate her digestive system or are just unable to pass through her narrowed intestines. “I have to plan ahead and bring food with me on busy days, because there aren’t fast food or grab and go options.” She typically can’t go out with friends and when she does, she has to dictate where they eat. Toilets are another constant worry. “My day is scheduled around the bathroom,” she tells me, as she suffers from chronic bladder and rectum problems. She doesn’t leave the house until she thinks she can go at least an hour without needing a bathroom. “I feel my intestines every day. Some days are worse than others. There’s always cramping… it’s less intense flare-ups now and I can work through 10-15 minutes of cramping.” While the flare-ups are more manageable at times, she still has days when she can’t leave her bed due to pain. She also has fatigue, is physically tired, and sitting too long makes her bones hurt. On Fridays, she just likes to go home and go to bed. Emily wonders if part of it is from age, but how can she know?
A common complaint I hear from chronically ill individuals (and that I have experienced first-hand) is being dismissed by medical professionals. For Emily, the time that stands out the most was at one of the first appointments after she completed radiation treatment. Her oncologist spoke down to her when she expressed concerns over bone pain she was having, and he told her “bones don’t have feelings,” before quickly changing topics. She had to wait 6 years to see someone about her bone pain, to find out she now has osteoporosis. At a round of doctor appointments searching for answers to her digestive issues and constant weight loss, a GI doctor told her to avoid dairy and take probiotics. “I had already figured those things out on my own. And they weren’t the cure-all, they weren’t making the difference. But [the doctor] had no other options for me and she hadn’t treated someone with radiation enteritis.” After that doctor had nothing left to offer, Emily ended up in the ER, where that ER doctor suggested Emily go to Mayo. He called the GI doctor and worked towards getting the referral. It was at Mayo that some answers were finally found, but more than that, a compassionate team made Emily feel heard and validated. So, while locally Emily has felt dismissed quite a bit, it was a series of hoops she had to jump through to find a team willing to go the extra mile.
How does she deal with difficult doctors? “I shut down. I’m non-confrontational. In my experience, since I’m this sick patient going in, I feel I have no authority. They have the authority over me and I’m not allowed to challenge them.” If an appointment hasn’t gone well, she’ll leave and “usually go sit in the car and cry for a few minutes.” If it’s really bad, she’ll text a fellow cancer survivor. They calm her down and tell her it’s not her, it’s the doctors. Then she’ll drive home, crawl into bed, and try not to feel guilty. To prepare for appointments that she knows aren’t going to go well (as with certain doctors that she has to see, due to lack of medical choices in Des Moines), she knows not to schedule anything for the rest of the day. She’ll have to head home right after, get whatever chores done that she has to, then go to bed. An empowering moment this past year was when she was able to speak up and tell her oncology office that she does not want to see the new doctor again. Being able to speak up and take some power back puts you in charge of your health. You do have the right to change doctors.
Since there are fewer choices and treatment options locally, I asked her to what extent is she willing to keep fighting for answers? “When you feel that sick, you just won’t stop.” She was so tired of losing weight and had to do something. Her parents offered to take her to the ER no matter the time, no matter how often. In one week, she went to the ER twice. But that was what finally got someone to listen to her. That was how she was finally on the right path to a referral to Mayo. If she didn’t have insurance to go to Mayo, she said she would have gone anyhow and found a way. “For health, yeah, I’d go pretty far.” Sadly, that’s not a viable option for all Americans, and medical debt has become the leading cause of bankruptcy.
An important thing for “normal” people to remember is you don’t have to look sick to be sick. “Just because I look healthy, doesn’t mean I am healthy (or mentally healthy, for that matter).” She’s worried she’ll sound snotty, but offers “Unless you’ve gone through an illness, or been a caretaker of someone with an illness, I’m sorry but you just don’t get it.” She feels she has a deeper understanding, since she’s taken a deeper reflection and paused to think on life. “Your perspective changes with illness,” but she notes that there are cancer survivors who don’t seem effected after treatment. They can continue with their lives, but Emily “couldn’t go back to anything. I couldn’t go back to my job, I couldn’t go back to hiking.” She found advocacy as a way to process her emotions.
After treatment, it took her two years to share her story. She’s still not comfortable doing so, but she is more comfortable sharing now and does so with growing frequency. And though it didn’t happen right away, meeting another young adult cancer survivor has been life changing. Together, they are working to build a local network to spread awareness. They have lots planned for 2020, including having Governor Kim Reynolds sign a proclamation declaring January Cervical Cancer Awareness Month in Iowa. They’ve also put together blessing bags to leave at their oncologist’s office to hand out to other cancer patients. Ongoing activities include support group Meet-Ups.
When I asked her if there’s anything else she would like people to know, she added the thought “Chronic illness takes up so much of your time… Chronic illness is every day. It doesn’t go way, it’s lifelong.”
I’m very weak today. Much like Michael Scott, I felt stronger yesterday. But, that’s how this thing goes, I guess. Yesterday I had physical therapy and apparently it was enough to really tire me out. I could barely lift up my water glass at work, something that usually is not a difficult task at all. My fingertips were very sore and typing took a toll on my hands. I didn’t even do anything with my fingertips yesterday, except for my normal typing.
I was miserable all day. It was hard to lift my arms, my eyes didn’t want to stay open, I couldn’t get comfortable because my legs hurt to sit but I knew I wasn’t strong enough to stand. I could barely walk without really focusing on it. You know when you have a really bad cold or the flu, and it gives you allover body aches and extreme fatigue? That’s what this was like. Only my flares like this will be gone, *hopefully*, by evening. It usually lasts about 24 hours and then I start to bounce back. It all depends on how much I exert myself. Recovery could take several days after just a bit more activity.
And remember to plan your spoons!
Dealing with this extreme fatigue while working, commuting no less, quickly uses up your spoons. But at the end of the work day, there was still the hour drive home, dogs to be walked, and meals to be prepped (because I was so tired on Sunday that I only planned two days). Sometimes staying alive literally feels like it’s going to kill me. But I got it done, took a nap (unplanned, so maybe it was more of a pass out?), and have enough energy now to update the blog and watch an episode of The Goldbergs on Hulu. Look at me go!
Freezing rain is supposed to start in a few hours and go into the morning commute. Hope I’m feeling better by then!
Trigger Warnings: Depression, Suicidal Thoughts, Medical Procedures, Clowns (that one is for you, B)
Starting in my mid-twenties, at the close of every year, my dad would tell me, “Next year’s going to be better. It’s going to be your year, I can feel it.” As my years got worse and worse, he eventually stopped telling me this. That was probably four years ago and it was way worse than him telling me things were going to get better. Whether he felt it cruel to keep telling me this, or if he gave up hope for my future, I’ve never wanted to ask him.
The last five months have been so very difficult. And while I’d like to think next year’s going to be better, the truth is it will probably get more difficult. It might not end up being my year, but we have to press on. And if not? Then there’s probably going to be a killer clown waiting for me in a cornfield next summer. That’s just how my luck goes.
Sadness and Celebrations and of Course… More Medical Testing
Dad is still in the hospital. He’s been there since September 6th, with the exception of three days when he was sent to a nursing rehab center and went totally septic. He then spent a week in the Critical Care Unit, almost dying several times. It was awful. But we witnessed several miracles. Really big ones. He’s still alive, he’s still fighting, and there are still a lot of people praying for him. It has emotionally, mentally, and physically drained all of us.
Trying to balance spending time with dad as he’s fighting to live, while battling my own health issues and trying to find answers, on top of working full-time to keep my job – it’s all too much. Dark thoughts started to return as the depression deepened. At one point I had to ask myself why was I trying so hard to stay alive? It’s been about two years since my last suicidal episode. I’ve worked very hard to find balance, but it has been tested to the absolute max this year. (I’m okay, I’m safe, no current thoughts of harm.)
I had an upper GI scope two weeks ago. I told them ahead of time that I was afraid of waking up during the procedure and trying to pull the tube out. The doctor assured me that I’d be well sedated and not to worry. He was wrong. I woke up, panicked, and tried to pull the tube out. The nurses started yelling at me to breathe and others worked to restrain me. (It took me a few days to realize why I had bruises on my arms and legs.) What fun I always have at these events! The biopsies came back with “mild” findings, so I get to discuss that with my GI doctor in a few weeks.
Right now I have five doctor appointments scheduled for January. I know how to start the year off right! Lung function testing, allergy testing, GI… Plus physical therapy! But enough of that, let’s look at celebrations.
Dad is alive and has shown improvement.
We broke a record on Christmas day – it reached 60 degrees!
I’ve lost almost 40 pounds due to food allergies and mild starvation from fear of anaphylaxis (ok, that one isn’t all good, but all my doctors seem happy about it, despite the obvious problems)
And even though I’m still avoiding a lot of foods, I’ve reintroduced several. Not always with success, but it’s a learning process.
I found a gluten free cake mix at Aldi that didn’t contain any of my known allergens!! Most GF cake mixes I’ve found contain soy. This one doesn’t and nothing else in there has seemed to make me sick! I made my grandma’s frosting recipe and it was wonderful. I couldn’t have cake with my family on Mom and Dad’s anniversary, no cake on my birthday, no cake on Dad’s birthday… I’ve missed cake like, well, like a fat girl loves cake. It was a special treat, but very rich for my rice/turkey/broccoli diet.
I’ve finally started watching Stranger Things! I’ll finally be caught up with the general population!
I wish there were more celebrations, but I’m just happy there are any. Trying to stay positive; not always easy.
2020 “Resolutions” or “Lofty Goals I’ll Try to Work On”
Get a haircut (seriously, it’s been since mid-July, but it’s so hard to find the time or I worry about having to cancel an appointment on my way to the hospital for an emergency)
Read and write more poetry (which in theory should be easy, since I spend so much time sitting at the hospital or waiting for doctor appointments, but it’s too hard to concentrate)
Keep up with the blog (my goal with this was to connect with and interview other chronically ill individuals… That’s happening in January!)
Pray more, worry less. (Sounds easier said than done, but let’s give it a whirl.)
I’ll finally start my interview series! Yay!!!
Have a happy and safe 2020, filled with many blessings!
When I was just shy of three months old, our house caught on fire while Mom was making fried chicken. She threw me into my brother’s arms and told him to run. He was only four and ran with me to the closest neighbors, a quarter of a mile away. He saved my life, but unfortunately I sustained severe smoke inhalation. (The only casualty that day was a pet bird.)
At the age of 26, at a doctor appointment for yet another case of severe bronchitis, that doctor figured out something from my case history. She said I had been born with an undiagnosed birth defect that would have meant my lungs were underdeveloped at that time. She also said the normal course of treatment for this would be close monitoring and antibiotics to ward off infection to give the lungs time to get stronger. As it so happened, the smoke inhalation gave me a pretty bad case of pneumonia and I ended up on antibiotics and was closely monitored. This doctor concluded that the fire had actually saved my life. If left untreated, statistics say I would have been dead by the age of seven. So, hooray for fire??
But I still suffer today. Because of the smoke inhalation, I developed a nasty smoke allergy. And during Fall, when there are leaves burning and bonfires every other night, it’s torture some days… Like today. My lungs are inflamed and breathing is a challenge at times. But I’m here, and it must be for a reason, because who would have thought a house fire would save my life?
Beware! This is a cautionary tale. Something similar could happen to YOU!
There was a young woman, living just outside a larger city. Her city had large hospitals, doctor clinics in every neighborhood, and was rated one of the best cities to live in in her whole country. But her city had a secret, and the young woman was about to find out this dark mark on an otherwise ideal location.
One day the young woman started experiencing strange pains. This wasn’t completely odd for her, as she had often had pain through her life. But when she would go to the doctor, he would just shrug and say it’s probably from stress, or from not exercising enough, or poor diet. This was obviously caused by something the woman was doing to herself and he just couldn’t help.
The young woman exercised more, worked hard to change her eating habits, started going to therapy to deal with her stress and anxiety. But still, her pains began to worsen. She kept falling while working out, she had to start walking with a cane, and now her ankle was swollen. She returned to her doctor with all these new facts.
“Well, you’ve obviously sprained your ankle because you’re not working out correctly. You need to be more careful. And you’re getting older, and since you were so BADLY out of shape, it’s going to hurt for a while until you get used to working out more. Just keep pushing yourself.”
She returned to her routine, but now found all she could really do was walk a mile, maybe two on a really good day. Less than a quarter mile on the bad days. Any aerobics were out, they were just too painful. No more fun Zumba classes. And now her vegan lifestyle seemed to be making her sick. The more fruits and vegetables she ate, the worse she felt. Her sinuses began to swell shut and her intestines constantly hurt. Her stomach made so many noises that she sometimes had a hard time falling asleep. And then…
She started waking up with very weird sensations. Her arms felt like they had fallen out of their sockets. They hurt so badly and she could barely use them when she woke up. She would have to flop them around until she could push them into a wall. Then she would use all her strength to pull one arm up and around, pressing on the wall, until she heard a “click.” Finally, her arm was back in its socket. She repeated with the next arm. And now she KNEW she had something to work with, so she returned to her doctor.
Oh, how he laughed. “There’s no WAY your arms are coming out of the sockets. Impossible! It’s your anxiety. Obviously the stress of working out and changing your diet have made you too anxious, and now you’re imagining things. Take these anxiety pills. You’re fine.” He laughed some more, and so did his nurses because the young woman could hear them all laughing behind the door after he shut it on her.
Now began a time of great despair. The young woman knew something was wrong, but who would help her? Her dad recommended the specialty clinic he went to for his advanced health problems, and a nurse practitioner there agreed to see the young woman. The NP agreed something was off with the young woman’s health, but she didn’t know what. A year of testing followed.
It turned out that the sprained ankle her old doctor shrugged off was actually broken and had healed incorrectly. So the young woman started physical therapy. Her new PT looked at her funny and asked how long her ankle had moved like that. She didn’t know, maybe always? Apparently, it was a very loose ankle. And then the PT noticed her knee on the same leg was loose too, and her hip, and that’s probably why she kept falling when she worked out. He had her work on strengthening those muscles to keep her stable. But then the shoulder, on the SAME SIDE as her loose leg joints, popped. Apparently that wasn’t supposed to happen either, so he added physical therapy for her shoulder. It all started to help some, but she couldn’t get those “loose joints” to tighten up. After months of physical therapy, her PT told her that insurance was going to deny her next appointment. She just wasn’t getting better, but he thought if she continued at home she would slowly see improvements.
The young woman went back to her NP and they decided to do some MRIs to see if anything would show up. Nothing did, but new symptoms started to develop. Now the young woman had pins and needles throughout both legs, both arms, and in her face. She thought, “Ah! This has to mean something!” And the NP agreed, but what could it be? The MRIs, which had also included one of her brain, were all clear. The NP referred the young woman to a neurologist, who said everything looked fine with her MRI, why was this woman here? As she explained her symptoms, he said, “Oh, it might be MS. We’ll watch for that to see if anything new pops up. But for now, live your life.”
Next came the colonoscopy to find out why her intestines hurt so badly. Not surprisingly, the test did not show anything. Eventually, food allergy testing was done. And that was the really scary part. The young woman, actively pursuing a vegan lifestyle, was allergic to most fruits and vegetables! Now she had to go back to eating meat, since it was one of the few things that didn’t make her physically ill. Oh, the irony. The disgusting smells of raw meat, of cooked meat, of any meat at all!
She ate less and less, losing weight faster than she should, but doctors were happy she was “finally losing weight.” Soon, her clothes were falling off of her and she was worried about nutrition. But any time she tried to add a fruit or vegetable to her diet, her tongue started to swell up. Then she noticed that her metal water bottle hurt her mouth, then silverware hurt, too. Any metal seemed to cause a reaction. Still, whenever she was referred to a new specialist, no one seemed to know what was going on. And eventually, no one seemed to care.
Yes, live your life, knowing something is wrong but no one can tell you what exactly. You see, her city, full of doctors and knowledge, was actually full of medical professionals unable to perceive what was really happening with the woman. Her food allergies, her pains, the loose joints, the pins and needles, where all because…
Now, turn to the person beside you and grab them as you yell:
Today is not a pleasant anniversary, but it is a day I mark and acknowledge. Last year I decided I would make it a day to spread awareness. This year I mark today by mailing a letter (yes, a physical paper letter) to the University of Iowa Hospitals & Clinics. I don’t know if I’ll get a response, but I want to let them know my story and that I’m counting on them. Many of us are.
The pictures are for your benefit, gentle readers, but maybe I should have mailed copies with the letter.
RE: Gynecology Services
Dear University of Iowa Hospitals:
I’m writing to inquire about the treatment options your Gynecology Department uses for endometriosis. In my research, I do not find any excision surgeons listed in Iowa.
As I’m sure you are aware, when endometriosis is removed with ablation it has a much higher chance of recurrence than if treated with excision. This past year Mayo Clinic Hospitals revised their guidelines for surgical treatment of endometriosis to be strictly excision. When can we expect the University of Iowa Hospitals to follow their example and start offering excision surgery in Iowa? Our state surgeons look to you for leadership and we need you to lead the change.
I am still hearing and reading in support groups that doctors throughout Iowa are informing patients that the “cure” for endometriosis is a total hysterectomy. And that’s just not true. Performing countless, unnecessary hysterectomies is just a way to butcher individuals who are desperate and willing to have themselves mutilated. I know. I am one of them.
Two years ago today, at the age of 35 and childless, I allowed my gynecologist, a board certified surgeon in Des Moines, to perform a total hysterectomy on me. I was losing my mind from the pain and was willing to try anything. As there are no excision surgeons in Iowa, I would have had to travel out of state and try to come up with a very large sum of cash. The pain I was experiencing was crippling and caused me to miss many days of work, making any large financial venture impossible. Even for my health. After yet another visit to the ER, where I was given morphine and told there was nothing else they could do for me, I gave up. The next day I met with my gynecologist and plans were made for my hysterectomy. I had fought this nightmarish disease for well over a decade and wanted it removed from my body in hopes of getting my life back.
Despite previously having endometriosis removed with ablation in 2008, and assured at the time that it would never come back, in 2017 my gynecologist found a very severe situation during my hysterectomy. She told me I had a frozen pelvis and that some of my organs had fused together. Endometriosis was also wrapped around my colon and I was thankful to not come home with a colostomy bag. At my four week follow up appointment, I asked my gynecologist what will happen if this comes back again. She assured me that it won’t, that she had removed both of my ovaries, and therefore I was “cured.” From my own research I knew this wasn’t true. I had hoped and prayed it wouldn’t come back, but I’m fairly sure it already has.
We desperately need better care in Iowa. Women shouldn’t have to choose between castration or chronic, debilitating pain. Please, for the 1 in 10 women inflicted with this devastating disease, implement the gold standard of endometriosis removal: Excision Surgery. Thank you.