Peripheral neuropathy alters my balance. I also have poor proprioception (sense of my body in space), due to EDS. The triple slammer is wearing leg braces because my knees and ankles dislocate, courtesy of EDS.

As it has become clear, I have been a fall risk for quite a while. UGH! As an RN who used to care for patients like me, I never wanted to be in this category.

On June 19^th, it was a hot evening, and I foolishly took off my leg braces and shoes. My legs were swollen and uncomfortable. I just wanted to finish dinner dishes and sit down for the evening.

Just as I finished the dishes, I walked around the end of the kitchen island and caught my bare toes on the leg of the step stool we kept at the end of the island. I lost my balance and went flying directly into our solid wood dining room chairs.

It happened so fast, but I remember hitting my head, putting out my left arm, and hearing a loud crack. The pain was so intense, so searing, like nothing I had ever felt.

I have had two children in the 80’s with natural childbirth. This was worse pain. I have had 30 surgeries. This was worse.

I rolled onto my back and heard myself scream, although I did not realize at first it was me. My husband had seen the fall and called 911. While he was on the line with them, my head began to bleed. As a nurse, I know head wounds bleed a lot, but my husband said there was a very large pool of blood surrounding my head.

The EMTs and paramedics arrived quickly. After their assessment, they tightly bandaged my head, put my arm in a gauze-like sling, and gave me pain medication.

The paramedic thought I dislocated my shoulder because of how displaced it looked but I knew it was fractured.

I spent the next 8 hours in our local trauma ER, getting many X-rays, CT scans and thankfully, pain medication.

I did fracture my shoulder. As the orthopedic surgeon likes to explain, I broke the ice cream off the ice cream cone. Unfortunately, it was in pieces, known as comminuted and not aligned correctly. I also broke the glenoid or cup part that the humeral head fits into.

The first orthopedist I saw was blunt, not collaborative, despite me telling him I had been an orthopedic RN. He said no surgery needed and wear a sling. He also only gave me pain medication for 3 days. His advice was that the severe pain would ease after about 10-14 days!

I saw another one for a second opinion. He was much more collaborative, explained things in more detail and when he heard my extraordinarily complex medical history, referred me to his more experienced shoulder partner.

I have learned that pain control in the outpatient world of orthopedics is ibuprofen and acetaminophen. That might work if you can take ibuprofen, but I have chronic kidney disease and only one kidney so no NSAIDS of any kind for me. I have been taking arthritis strength acetaminophen every 8 hours. It is extended release, so it does work better than extra strength.

This is the part of the story that takes an odd twist. In the ER, they did several CT scans and one of them was cervical or neck CT. There was an incidental finding of a lytic lesion (bone destruction) on the third vertebra. The ER physician told me to follow up with “my physician.”

I have been seeing a hematologist for a couple of years for some low white blood counts. Knowing this result called for a hematology review, I set up a visit.

I discussed the results with my husband because his role is with biomarkers and cancer testing. We both knew that a lytic lesion could mean a potential blood/bone marrow cancer.

My hematologist ordered a skeletal survey X-ray to see if I have any other lytic lesions in my body on August 3^rd. I am so frustrated to say that 14 days later the hospital radiologist has not read the X-rays yet.

If I have other lytic lesions, there is a much more likelihood that I have multiple myeloma, a bone marrow cancer. This waiting because the hospital has a shortage of radiologists is maddening.

My hematologist also did more bloodwork. In March, it was negative. Last week, it was showing the possibility for multiple myeloma, but also the potential for another less severe disease.

Meanwhile, my orthopedic surgeon says my fractured shoulder is not healing. Initially there was discussion of doing a reverse shoulder replacement. Now, there is concern that it will not work because my bone will not heal around it.

So, I sit here with a fractured shoulder, still in a sling. And wait. For news about the X-rays.

The one thing that I am incredibly grateful for is my ability to function with one hand/arm. I must always wear the sling, even to sleep. I can only remove it to shower.

I have figured out how to manage my curly hair, shower, and dress, make my bed, do some cleaning, though not all. I do most of the cooking with some help from my husband when he is home. He travels for work, so we cook extra when he is home, so I have individual frozen meals when he is away.

I do miss my gardening, driving, and walking outside but our neighborhood is hilly and uneven, and I am not chancing another fall.

Much gratitude for the head laceration being very bloody but no traumatic brain injury. I did have an impaction fracture of my right knee, since I also landed on that too, but it will heal in about 6 months without intervention.

My family has been amazing. My daughter calls me daily and comes to visit on weekends. My son checks in often and offers his help all the time. My brother calls me to check in and see how he can help regularly while my sister texts me often. When I first fell, my husband had to be my primary caregiver. I could not do much for myself. I am blessed to have such support.

If the skeletal survey is positive, the next step is a bone marrow biopsy. I have had one before when they were diagnosing my mast cell disease. I am not looking forward to it, but I am ready to move ahead and get the right treatment, if needed.

As I have experienced with each one of my diagnoses, the medical community moves at its pace, not mine. There are silos in medicine. Specialists do not necessarily talk to other specialists about their patients. I have learned to be my own advocate.

Now, I just need to figure out how to move the radiologists along. They triage or prioritize reading all radiology by ER first, then ICU and then inpatient. Outpatients are last. Unfortunately , the ER has been remarkably busy, so outpatients are on hold. Frustrating system for sure. If I had been aware, I would have gone to a freestanding image care center.

Follow me for more updates and thanks for reading.

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Since I am considered a complex patient with several diagnoses, I am not a favorite of physicians. I have had more than a few physicians tell me I am too complex for them.

On the other hand, I have had physicians who pretend to understand all my diagnoses and complexities. This is where it gets more frustrating.

I would rather have the physician tell me I am too complex for them to comfortably and safely manage my care.

I am presently seeing a couple of physicians who assured me they are “very familiar” with Ehlers Danlos syndrome (EDS), dysautonomia, systemic mast cell disease and Hereditary alpha Tryptasemia. These are just four of my medical diagnoses, but the ones that cause the most difficult complications.

I had to switch from a CPAP to a BiPap for severe sleep apnea secondary to the EDS. The sleep specialist stated she understood EDS and how it affected airway occlusion.

We started with the BiPap titration study. It’s an overnight sleep study that determines if it will work and what settings to use on the BiPap. When I met with her in office, she assured me that we could make any adjustments necessary. “Just let me know.”

Since I taught patient advocacy as an RN educator, I made certain to know the best way to contact her. I was advised to either call the nurse line or use the portal.

Not to call out this specific physician, because this has occurred with other physicians too, but I have done both methods four times and it has been 24 days. She has not changed the settings, although the nurse messages say she will.

I know that our healthcare system is overloaded. Our physicians are seeing an enormous number of patients per day. But patient care is suboptimal.

I often wonder if I, as an RN with medical knowledge, cannot get the care I need, how do other 70-year-old patients without that information get the necessary care.

My sleep specialist knows that the settings are causing me to be awake most of the night. The goal of the BiPap is for improved sleep. This is such a contradiction. Is she too busy to call the medical equipment company with the BiPap setting changes? The patient is left wondering how to manage.

Some of my specialists are out of state. All questions are through the portal. It seems to be dependent on the academic center whether the responses are timely.

While my medical knowledge provides me the opportunity to ask appropriate questions about my care and treatment, it has not afforded me timely responses.

Even more daunting are the misdiagnoses. Except for EDS, I was the first to identify my diagnoses.

This is not uncommon in the chronic illness community. We are in tune with our symptoms, but there are few physicians for these conditions. So, we suffer for years until we find someone who can manage our care.

Then the cycle starts of “regular” physicians who state they understand us but treat us like everyone else.

The positive in this frustrating situation is that we become a community of chronic illness patients. We support one another. WE hear each other.

I would much rather have a physician say that they do not know much about EDS or dysautonomia or mast cell disease. I have the information for them. This is what I taught as an RN educator. Not all physicians dislike learning from their patients.

For now, I must wait until my sleep specialist calls in the new settings. Will they work this time? I hope so. Or it will be another LONG wait for a BiPap change.

How do you manage physicians that do not respond after a long time?

For many of us with a chronic illness(es), they are not curable. Some are manageable, some are progressive.

Initially, there is a grieving process we all go through, much like death. There is the denial (I am fine), the anger (why did this happen to me?), the bargaining (I will take great care of myself from now on if I get better), depression (I don’t care about anything), and hopefully we reach acceptance (I can do this).

We don’t do this in a linear way, and we are unique in our responses. Some of us are more restricted in what we can do and where we can go.

I started out with one genetic disease (Ehlers Danlos syndrome) that limited my mobility somewhat but has substantially progressed. I now wear multiple braces; on my legs, back and occasionally elbows and wrists. Moving and walking is often painful.

Then I was diagnosed with systemic mast cell disease, causing allergic reactions to benign substances and foods. It also caused anaphylaxis, fourteen times, two requiring ICU. I could not eat out, be exposed to certain smells or chemicals.

Next came two autoimmune diseases, requiring immunosuppressant medications. They wiped out my immune system. My blood counts dropped so low, that I was at risk of catching any viral or bacterial infection. It was like being on chemo.

For several years now, I have gone out very little. My home is my sanctuary. It is my safe space. I cook all my own food that I tolerate. No chemicals, only natural cleaners.

When I must go out, I am cautious. I use hand sanitizer liberally. If my counts have dropped, as they often do, I wear a KN95 mask.

I rarely eat out, since I often get sick from the food. Usually I eat out only when out of state for my medical care. Luckily, I love to cook.

I do almost all my shopping online. The UPS, FedEx and USPS delivery people know me well. I keep a cooler on my front porch stocked with drinks and snacks for them.

This may all sound so depressing, but it is not. A smaller world can mean fewer outings, less stamina and more limits, but I still have a full life.

My house and my yard are my pleasure. I have set them up to be the center of my comfort, ease and low-energy enjoyment.

Each room is simply designed to support my functioning but aesthetically pleasing to me. My favorite is my reading/meditation corner.

I love being outside and spring is my favorite time of year. Spending time on my deck glider, having a snack at my small table and chairs, and watching the birds in the bird bath and feeder delight me.

Seeing the blooming trees is my sign of hope. Hope for new life, hope for humanity, hope for better medications, hope for more energy.

I often share that “the old Jan” is gone. The one who used to hike, dance until 3 am, work 12-hour shifts in the hospital. The “new Jan” is here now. She is calm, tranquil, relaxed. She savors each moment. Adores daily videos of her granddaughter. Treasures family visits. She has online friends who understand her world. She still loves to help people. Her inner world is rich and joyful.

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If you too are chronically ill, may your small world be a big life.

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HaT can cause issues with medications, friction, vibration, heat exposure, physical exertion, emotional stress, infections, hormonal changes and environmental allergens. In other words, it must be carefully managed. I have had 14 episodes of anaphylaxis due to HaT.

So, the travel to another state and a physician who completely understands it is imperative. To get there from my city requires two flights. Flights cause vibration, one of my HaT triggers, so extra medication is required. Air travel is not something I enjoy.

My daughter accompanied me on this trip. She has three of the same medical conditions: Ehlers Danlos syndrome, dysautonomia and Sjogren’s Disease. Eating out is difficult for both of us because we have many food intolerances.

We arrived at our destination city in the evening, exhausted. We looked for a restaurant that could deliver to our hotel room that was gluten and soy free. Our choice was a meat and potato. Unfortunately, this was craziness #1. We both became sick from the food. We spent the next few hours running to the bathroom. Not a great start.

The next day, we walked the few blocks to the local grocery store so we could buy our own food. We were staying at a Homewood Suite with full kitchen. I had to start a clear liquid diet the next day for the colonoscopy. We chose safe foods we knew we could tolerate. Even though we walked down, we had to call a Lyft to get back since we had 6 heavy grocery bags.

The grocery store was on a one-way street. They would not let us take our cart out of the store. On the store side of the street, there was a metal railing that ran the length of the store. When the Lyft arrived, we had to carry the bags, one by one, down the street, around the railing and out into the street. No small feat for two women with EDS and dislocating joints. Craziness #2

I had purchased enough clears to last the next day in preparation for my EGD (upper endoscopy) and colonoscopy. Both were being done the same day. Then I got a call from the hospital that I needed an EKG prior to the procedures and set it up for 11am the next day.

Not thinking it through carefully, I took two bottles of Gatorade with me, and we headed to a suburb of the city to get the EKG. Across the street was my clinic appointment with my GI/HaT specialist. They did the EKG quickly and we had 3 hours to wait till clinic appointment. I did not get back to the hotel room for a total of 5 hours. Two bottles was not enough so I was dehydrated already. Bad choice from a RN! Craziness #3

On our way back, our Lyft driver appeared to have Tourette’s. He would abruptly swing is head all the way to one side, then suddenly change lanes at such a fast pace, jerking the car. Then he would wildly swing an arm and jerk the car into another lane, cutting people off. By the time he dropped us off, I was feeling so lucky to be back safely. Craziness #4

Due to my dysautonomia and gut dysmotility, my physician agreed I could start my prep 2 hours early. This certainly wasn’t my first prep, so I knew what to expect. Three pills first, followed by Gatorade mixed with the Miralax. Drink every 10 minutes.

I had completed the prep and started the bathroom run every 15 minutes or so. To my utter shock and fear, over the speaker in the room, came an announcement that there was an emergency and we had to immediately evacuate the room!

Now what? First, we are on the 11^th floor. I wear full leg braces and have extreme difficulty doing stairs. More importantly, how am I going to hold myself in the middle of this prep?!

Both my daughter and I grab our coats and purses and start the trek down the 11 flights of stairs. It is painful for me to do this, for both my legs and my GI system. We finally make it down to the lobby, along with all the other guests. The fire trucks are there.

I am grateful they moved fast and I have good control although I was so uncomfortable. After about 20 minutes, they call all clear. The elevators are still not operational. The maintenance man sees me almost ready to cry and uses his key to let us up in the service elevator, along with a few others.

How fast did I run for the bathroom? Craziness #5

That prep was still working at 4:30am when we started getting ready to go to the hospital. I was the first case. Another Lyft driver picked us up at 5:35am and I barely made it in the front door before I had to use the bathroom. Craziness #6

Thankfully, I made it through the pre-procedure area. The physician came in to see me and advised they were adding another procedure during the upper scope. I had been having difficulty swallowing so they were going to do a FLIP (Functional Lumen Imaging Probe).

I addressed my low heart rate and blood pressure dropping when I receive anesthesia, but they assured me they would monitor closely and support with medications as needed.

I’m happy to report that all the procedures went well. There were a few non-serious findings that we will manage. I was sent back to the hotel room to recover. Luckily, I planned an extra day before flying home.

It’s a good thing I did because I continued with water diarrhea all that afternoon and into the next day. I could not take a sip of anything or eat one bite without running to the bathroom. This was not typical. Craziness#7

My potassium was down. Both of my hands were tingling. When I took my blood pressure on my smart (too smart) blood pressure monitor, it indicated cardiac arrhythmia.

My daughter got a few bottles of Body Armour electrolytes. Each bottle contained 680mg of potassium. She was the best nurse, making sure I sipped constantly, even though I was queasy.

I also called my physician who recommended Imodium to stop the diarrhea. Gratefully, it did.

That afternoon, I was able to eat small amounts and regain some strength. I drank all the Body Armour and felt much better.

By our flights home the next day, I just felt tired. We didn’t get in till midnight.

Since the inside garage had been full when we left, we wheeled our suitcases outside. We were so happy to be home. Then, we were stunned to find that my car wouldn’t start. We called my husband, who came to pick us up. I left my car there until the next day. Craziness #8

The next day, I borrowed a jump pack from my son. We returned and jumped my car and drove it home. Somehow, we had inadvertently hit one of the dome lights in the car when we got out quickly, in our haste to get through security.

That was one crazy trip! I learned a lot of lessons. One of the most important is always ask for a lower-level floor. I never want to walk down 11 flights of stairs again.

We moved into a small apartment, with no furniture and just a few belongings. We slept on the floor in sleeping bags, ate dinner on cardboard boxes and watched a small TV with green people. It was given to us by someone who was going to throw it out.

I told me kids we were “camping”. To this day, they remember it as fun. Gratefully, the apartment was in a large Victorian house, over the apartment that my twin sister and her family lived. She was a big help in a difficult time.

Little by little, friends donated their hand-me-down furniture. I had a couch with a broken arm that we shoved into a corner to keep it from falling off. I was working as an RN and finally saved enough to buy mattresses to put on the floor.

Over time, I either was able to buy more inexpensive furniture or accepted used furniture from friends. I did not receive any child support for many years, so money was extremely tight. The kids would spend some time with their dad, and I would work double shifts on those days to make more money.

What I remember most is the constant rushing. I had to commute to the hospital where I worked which was about 35 minutes away but then our parking lot was not close to the hospital, so it was another 20 minutes. My 7 am to 3:30 pm shift meant I needed to be up by 5 am and out the door by 6 am. Getting the kids ready that early with breakfast and lunch was rush, rush, rush.

I worked at a trauma center on a post-surgical floor, so that was always very busy. I loved it but it as non-stop. It also had a spinal unit, where we managed new spinal cord injuries, as well as spinal surgeries. I went home after my shift exhausted, as most RNs do.

Days off were spent doing all the mom things. School events, cooking, cleaning, catching up on my kids’ lives. I had ritual each night that I would spend 30 minutes in each’s kids’ room before bed. They would share their day with me. Special times. But I also knew I had so much work to do yet that night. Rush, rush.

My kids grew up, went to college, paying their own way, mostly through loans. Mom sure didn’t have enough money. I certainly was proud of them! They were so independent, confident and self-sufficient.

I remarried and life was different. Sort of. You’d think the rush and chaos of the earlier years would have stopped. I changed jobs and went to work as a case manager for an insurance company. The physical toll of working on the unit when you have a connective tissue disorder is too great. Unfortunately, I hated working for the insurance company. The pressure was high. Perform, squeeze, rush.

Ultimately, I returned to the hospital for another four years until my medical conditions forced me to retire a few years earlier than I would have liked. During those four years, I worked in a small community hospital as a nurse manager. My role changed a couple of times, but in a small facility, you take on many tasks.

I spent the next four years in and out of the hospital as different specialists attempted to stabilize me. Those years are a complete blur. I was in ICU a few times. No nurse ever wants to see ICU from the patient side.

Once better managed on many medications, I greatly missed nursing. I began volunteering for a rare disease foundation. I very much enjoyed responding to patients’ questions, especially since I had the same disease. It started out fun and part-time, but the foundation grew and patients from all over the world would email me. I wasn’t good at setting boundaries and ended up working long hours. Then I agreed to become a board member. I stayed until my second autoimmune disease worsened and finally completely retired in 2022.

Here I am in my second act. Life is slow, intentional. Most of my medical conditions are stable. Sort of. They are dynamic but I am used to the nature of these conditions.

In two months, I will be 70 years old. The change is profound. I purposely notice. I pay attention to things I would have looked past in my younger years. It’s like a new world. Am I just more in touch with my mortality? Likely true. We all die. When is the mystery. But as we age, it becomes more of a concrete certainty that is more ephemeral than when we are younger.

I wake up each more ready to greet the day with enthusiasm and expectation. Whether it’s sunny, rainy, freezing cold, as it has been here in upstate NY, I am ready. I no longer look ahead for the next week. Today is my focus. This moment is where I live.

Looking out my window at the birds, even in the snow, singing their songs. Taking pleasure in cooking a meal and savoring it. Tending to my houseplants with nurturing love. Curling up in my chair reading a book.

People and situations that once upset me, no longer concern me. The stress that I used to feel over circumstances out of my control cause me no anxiety at all. I am calm and relaxed in most all situations. Peace and tranquility are my daily goal.

I think more clearly. I speak more purposely. Am I doing the right thing? Does this matter? I’m reflective. Each night before bed, I journal. Did I accomplish the things I wanted? Was my behavior helpful? I am grateful that I can now recognize this is my time to notice, observe and cherish.

I am curious. How many other 60’s + feel this change and is it positive in your lives too?

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Starting in my early twenties, I started running. It became a sanity saver and obsession. I ran 6 miles a day in rain, snow and 90° heat and humidity.

In my 30’s, I added hiking. I loved wooded trails and the smell of nature. I’d throw on my hiking boots and head out on my day off.

Working as an RN, I often picked up extra shifts at the busy trauma center. In addition to this, I was taking care of my two children.

Life was very busy and active. There was little to no down time, but I was strong and tough. I didn’t need it. At work, I took tough patients. I liked the challenge.

Then around 2011, I started to not feel well. I passed out at work. I shrugged it off as low blood sugar from not eating. Fast forward one year and I began a diagnostic journey to where I am now.

I knew from 1988, that I had Ehlers Danlos syndrome, a connective tissue disorder. When diagnosed, we (myself and children too) were given very little information. It’s genetic, affects all connective tissue and can cause joint dislocations. I was relatively stable back at that time.

Then in 2012, I was diagnosed with mast cell disease that was causing anaphylaxis. Over the next 3 years, I experienced 14 episodes of anaphylaxis, two requiring ICU admissions.

Next came Hereditary alpha Tryptasemia, diagnosed at the NIH. Because I have an extra copy of the tryptase gene and I’m symptomatic (not everyone is), I react to many medications, and it increases my anaphylaxis risk.

Then I was diagnosed with dysautonomia, a dysfunction of the autonomic nervous system. My blood pressure and heart rate are very low, and I have difficulty regulating my body temperature. It can also cause small fiber neuropathy that affects multiple areas of my body, including my GI tract.

Lastly came two autoimmune diseases, rheumatoid arthritis (RA) and Sjogren’s disease. I likely had both for many years but had not been appropriately diagnosed.

My days of running and hiking are long over. I wear full leg braces just to walk. My hands from the RA function best with compression gloves. I often wear wrist braces too.

Here is the best thing. I still get up every morning and exercise for 30 minutes. It’s a strength training program designed by my physical therapist. I also walk on the treadmill in the afternoon for 30 minutes. Please understand that I had to start very slowly and work my way to this level.

I will be 70 years old in April, but I realized that strength isn’t always about being the tough one. Sometimes it’s about staying strong, at least as strong as your body can maintain.

I am looking forward to my 70’s. I will use movement, however it fits in, to stay my level of strong.

I am grateful for the ability to use the braces to function plus my dedicated physical therapist and physicians who guide me. I have slowed my pace considerably since I was younger, but it has allowed me to capture moments I may have otherwise missed.

I am still strong. For me.

He instilled that love of Christmas in me and my siblings. It brings me tremendous joy to buy gifts for my adult kids and now my very first grandchild.

Cooking and baking for them turns this Italian mama and grandma from a woman wearing braces and limping with pain, to a smiling, singing woman.

I had been without medication for my autoimmune disease for 8 months, as I tapered off steroids. Now, three months off steroids and autoimmune medication, movement is slow and painful. But the excitement that I feel over the upcoming holiday overrides the intensity of my pain.

Although I am moving slowly and pacing myself, decorating the Christmas tree reignites so many memories. Each ornament is a reminder from times past: kindergarten photos in a plastic tree, first Christmas ornaments for each child, ones from co-workers at the hospital, photos of our dads’ who have passed, and most important, photos and childhood ornaments from Kyle, my stepson, who passed at age 13.

We have very old decorations from my husband’s childhood that bring him back to his Christmas memories.

This year, I bought two new decorations that delight me. I wrote a note on SubStack about how lucky I was to be going on a trip with my best friend, my daughter. These decorations were purchased on this trip, so they will forever remind me of that favorite time with her. This cute snow globe and charming tiny glass tree are new memories to cherish.

Living with a chronic illness (or two or three) certainly changes how you manage your life. It does not have to alter your experience of happiness and joy.

Admittedly, I do everything at a slower pace. I must plan out when and how I will cook. My menu is less complicated than years past, but no one has complained.

I rest more. I put my feet up more. I am kind to my body. I just started a new medication so I hopefully will have less pain. In the meantime, I am thoroughly enjoying this season. And Dad, look at your sweet great granddaughter.

When people without a chronic illness hear the word fatigue, they think tired. The kind of tired that taking a nap or going to bed earlier fixes. Those of us with chronic illness know fatigue as that overwhelming, flu-like feeling that prevents us from getting off the couch.

Before I was diagnosed with dysautonomia, I had difficulty standing upright. I was weak, lightheaded and extremely fatigued. My blood pressure would plummet going from sit to stand. Walking from room to room was like running a marathon. Even sitting up for long periods was challenging. Gratefully, treatment by my autonomic specialist helped.

After diagnosis with autoimmune diseases, I developed another type of fatigue. I did not want to get out of my recliner. Every action took so much energy. Taking a shower was a monumental accomplishment. It was not until I learned more about rheumatoid arthritis and Sjogren’s that I understood inflammation can potentially cause the fatigue.

As an RN, I was used to working long hours and pushing through despite being tired. I could work double shifts and come home to take care of my children. This is where the transition from RN to patient was so very difficult for me. Where did that person go? The one with the boundless energy!

Understanding that pushing my body through fatigue is not helpful has been a tough lesson to learn. Pacing myself is so important if I want to get through the day and not feel debilitated. It is most definitely not a concept I was used to, so I am still practicing.

Now each day, I make a list of the most important things I’d like to achieve. Then I plan rest breaks in between each task or project. It looks like this: activity, rest, activity, rest, activity, rest, and so on. My activities can be as simple as taking a shower.

You can see how this can be mind-altering to a nurse who worked 16 hours, only to come home to another full-time job of cooking, cleaning, laundry, homework with kids. Mind reset for sure.

If I do not pace and attempt to push through, I crash. Either that night or the next day, I will become so fatigued, so exhausted, my body will be unable to function for a longer period. This lesson has been painful to learn.

Don’t get discouraged. As your disease(s) are treated, the level of fatigue does diminish. During a flare, it may temporarily increase, but you will know how to handle it better.

Just as age brings us through diverse phases of life, the fatigue of chronic illness will carry you through multiple stages. This will give you time to adjust and learn coping strategies. Rest, my friend. No guilt attached. Put up your feet and rest.

Love and gratitude,

Jan

It started out subtly, with just occasional snoring and moments of not breathing. My AHI (apnea/hypopnea) score was low, so no need to do anything initially.

Within 2 years, that score was high, meaning I stopped breathing enough times per hour to warrant wearing a CPAP machine. For those not familiar with CPAP, it delivers continuous positive airway pressure through a mask. This keeps your airway open, preventing the apnea episodes.

My next challenge was my facial structure. I am tall and thin so the vast majority of CPAP masks did not fit my face. Air would leak due to a poor fit. Finally, the respiratory therapist found nasal pillows that worked.

For the next several years, I successfully wore the CPAP with only a few apnea episodes per hour each night. Up to 5 per hour is acceptable.

The past couple of years, my autoimmune diseases worsened and I lost 45 pounds. Along with this weight loss, my connective tissue disease worsened. When I had a follow up visit with my pulmonologist, he wanted to take me off CPAP. His reasoning was that I had lost so much weight that I didn’t need it anymore.

This is the most important point that I want to share. Listen to your body! I knew that I was still experiencing apnea, even with the CPAP on. I would awaken with a gasp throughout the night. Despite his insistence that I didn’t need the CPAP, I insisted that I did. He reluctantly agreed to a home sleep study.

My pulmonologist was stunned to see that my sleep apnea had actually worsened. He changed the settings on my CPAP to accommodate. I continued to have difficulty and eventually made an appointment with another specialist.

She initially changed the settings again. That helped quite a bit but she wanted to do a sleep study at a sleep center to determine if BiPAP would be beneficial. If you have ever had one done, you know they are not pleasant. You are wired from head to toe. I’ll spare you the photo of how I looked. This is the room as it was set up prior to hooking me up.

BiPAP provides higher pressure on inspiration and lower pressure on exhalation. Unfortunately, it was very uncomfortable. I just did the study, so I don’t have the results yet.

Please remember to trust your body and your intuition. If you think/feel/believe something about your body, speak up. My pulmonologist would have stopped my CPAP.

Every time someone finds out I’m on CPAP, their response is that I’m too thin to need it. Our bodies do not read the text books. We are all different . Trust your body and trust yourself.

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What have you experienced about trusting and knowing your own body?

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Pain is often a prevalent symptom of chronic illness, as I have read from so many of your essays, articles and notes.

Each person’s pain threshold is different but living with it can be draining.

This is how my conditions affect my comfort level.

• Ehlers Danlos syndrome (EDS) causes daily subluxations (partial dislocations) and dislocations. I have unstable joints from ligaments and muscles that don’t function correctly due to the collagen defect, causing muscle spasms and tendonitis.

• Rheumatoid arthritis (RA) causes joint pain and stiffness.

• Sjogren’s syndrome causes muscle pain as well as secondary dysautonomia symptoms such as headaches, small fiber neuropathy (SFN) and GI pain.

• Either EDS or dysautonomia cause migraines.

Managing pain requires a toolbox of specific techniques, products, and modalities trialed over time. We are all unique in our approach, but here are some of my methods.

Prescribed meds.
Treating the underlying condition is most important since it often contributes to the discomfort.

Arthritis strength acetaminophen.
They are 650mg each tablet. I take 2 tablets twice a day as needed. It works much better than extra strength. I cannot take any NSAIDS due to chronic kidney disease, so acetaminophen is my option. Staying within the daily recommended parameters is important. Always check with your physician before taking any medication, even OTC.

Physical and occupational therapy.
These two specialties are so important to guide you. I still go to PT twice a month for ongoing treatment and have a daily home program, since EDS causes instability in joints, muscles and ligaments.

Cannabis products.
I use hemp CBD to help relax my muscles and have tried other products with varying degrees of success.

Lidocaine cream.
For muscle pain or times when I don’t use cannabis cream.

OSKA unit. Or red-light therapy. Both have clinical data for inflammation and this Pulsed Electromagnetic Field (PEMF) pain unit has established clinical data: OSKA

Myofascial tools.

Tennis balls, trigger point massage tools, Thera Cane and roller stick are the mainstay of my home toolbox. Releasing tight fascia can be the difference between extreme pain and manageable discomfort.

Ice/heat.
I mostly use heat on my sore, tight muscles but if my joints are swollen, I use ice packs wrapped in a towel.

Exercise.
This is critical for me to function. There was a time that I could barely walk across a room but with the assistance of my PT plus starting very slowly, I now do isometric, TheraBand strengthening, recumbent bike and walking. It sounds counterintuitive that exercise would be helpful when you have pain, but it is the difference between being able to move or not.

Epsom salt baths.
When I’m sore all over, have muscle spasms or just need to relax, I take a warm Epsom salt soak. The magnesium is absorbed by your muscles and relaxes them.

Compression garments.
For both my RA and EDS, I use compression. In EDS, compression not only provides better joint stability, but improves proprioception. In RA, the gloves help decrease the swelling and provide comfort. I also wear compression leggings every day.

Braces.
I wear custom-made leg braces due to my dislocating knees and ankles. They allow me to walk without falling. I also occasionally wear wrist braces when my RA is flaring.

Meditation and deep breathing.
I have been meditating for many years, long before my added diagnoses. I have used several types of mediation: guided, mindfulness, walking, focused breathing, and mantra. There is no one way to meditate and no one is perfect doing it, but the rewards are worth it. I also use different types of breathing techniques since they shift our nervous system from sympathetic (fight or flight) to parasympathetic (rest and digest).

Pacing activities and rest periods.
Pacing my activities and taking rest breaks has been one of the most difficult lessons for me to learn. I have always been high energy with a lot of stamina so having a body that needed to slow down was a mind shift for me. The benefits have certainly outweighed my desire to constantly move. It has allowed me more comfort.

Hydration and healthy eating.
I focus on anti-inflammatory, non-processed foods, plus eating small meals more frequently. Being even a little dehydrated can cause headaches and fatigue, so I keep track of my fluid intake.

Distraction.
Anything that brings you joy and distracts you from discomfort is effective. For me it is music, reading, cooking and family.

Making sleep a priority.
I’m notorious for staying up late. My favorite shift when I worked in the hospital was evenings. Plus, I dislike getting up in the morning. Now that I’m retired, I do go to bed later and sleep later, but I ensure 7.5-8 hours of sleep each night. I have a bedtime routine that signals my body to shut down and prep for sleep.

10% rule.
No one thing in my toolbox takes away all my pain, but if I add a few or even several of these together, 10% of each one I use, can add up to a lot of pain relief. This is a very important concept because many chronic pain/illness people give up after trying only 2 or 3 things. Try many.

Support.
On those days when you have used every tool in your toolbox and still hurt, reach out to someone for support. Call or text a friend, family member, support group or a therapist. I firmly believe every chronic illness patient should have a therapist, someone to talk to who is not in your family or emotionally vested in your care.

You are not alone. There are many off us in the chronic illness community. Even more importantly, we do not have to suffer in silence. There is much we can do.

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In 2012, I became very ill. I spent the next 3 years in and out of the hospital, sometimes, in ICU. In 2013, I had my right kidney removed. I was experiencing anaphylaxis almost every 2 weeks. My immunologist knew what was wrong, but even with all of the medications, it was not controlled.

I had started my own business in 2011 and diligently tried to maintain my client load. Bringing my laptop to the hospital, so I could respond timely to their questions annoyed my medical team. On good days, I would set up in-person appointments with my clients.

I had a port-a-cath placed surgically, so I could give myself IV fluids at home daily, to maintain my extremely low blood pressure.

My pill case held 44 pills for each day. I was grateful that I was an RN and could navigate this complex medical regimen.

Life centered around medical management of my three known conditions at the time. My older kids who then lived on their own were very supportive. My husband was anxious about my health, since he was the one schlepping me to and from the hospital and saw daily how it was affecting me. He was also the “Epi-King”. I often experienced anaphylaxis so fast, having little warning. I would say, “I don’t feel well.” Then I would be out. He would grab the Epi-Pen, inject and call 911.

Prior to this change in lifestyle, I had been active in the business community. I belonged to a women’s business networking group and had become good friends with several of the women. We used to go out to dinner, visit each other and attend social events together. When I had my kidney removed, a few of them came and sat at the hospital till I was in recovery. Tight knit group.

Finally, around 2017, I had to completely give up my business. I was so sad about it but my health took precedence.

We gravitate towards friends that are part of that stage of life. In college, our friends are other classmates. When our children are little, most of our friends are other moms and dads of our kids’ friends. As we enter the workforce, our friends are often co-workers.

Now I was in a position that I could no longer go out with these business networkers. Little by little, they stopped calling and texting. I missed them. I tried to keep up by texting and calling them but eventually, there was no response. I guess it’s a typical development of human nature.

Chronic illness can be so isolating. Most days, you feel too ill to go anywhere other than your physician’s appointments. On a good day, a trip to the pharmacy is a treat. Stellar days allow a short trip to the grocery store. But the biggest treat of all is a visit with family.

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One friend from 30 years ago has remained devoted. For a few years we lost touch, but when I was in the hospital in 2013, we reconnected. She has been the only one who has stood by my side through a lot of rough spots. When I feel miserable, she knows I am quiet and calls me. When she has difficult times, I listen, allowing her to vent. That’s friendship. We don’t need ten friends. One good one.

My strength, my energy, comes from my family. As mentioned in one of my notes, my dad showed us daily the importance of family. My adult kids are extremely close to me and call or message me daily.

Jan, Bill and Joannie

My other rock is my siblings. We have a bond that is so powerful, it helps get me through on my darkest days. For many years, every time we get together, we have been taking photos of the three of us, in the exact same order. It is so delightful to see these photos, year after year. My sister is my twin and my brother is the youngest. We get our curly hair from our Italian mom.

Without my family, this chronic illness journey would be so much more challenging. I am blessed. I know that not everyone is lucky enough to have supportive family, so I am grateful every day.

Making friends when you can’t get out is problematic, so treasure the one(s) you have and nurture your family relationships.

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Trigger warning! One young guy had sustained a shot gun blast to the face and despite dozens of surgeries, would never eat food again. He would forever need liquid nutrition through a tube surgically implanted into his stomach. I often took care of him on his many admissions. He was the most upbeat, kind guy! I never understood how he accepted this lifestyle.

Now that I am struggling with several chronic conditions, I have been struggling to eat. I developed abdominal pain after eating in 2019. It was only intermittent back then.

Each year it has become more frequent and more intense. I have now had a 45-pound weight loss. Initially it was thought to be one of my autoimmune diseases and I was started on very high dose steroids. That decreased the pain.

Eventually, I was unable to eat food at all. Working with a dietitian helped me find a “temporary fix” of making a protein shake that I could tolerate. Finding a commercial one that was soy and whey free, low fat and low fiber proved to be impossible. When a week turned into several weeks, we needed to add carbohydrates and tiny amounts of easily digestible fat.

I continued to lose weight and was never completely pain free. Something so simple as eating, something most of us take for granted, seemed so distant.

Drinking those shakes became a chore. I started to dislike the taste, the process of making them and had to psych myself to both make and drink them. I kept thinking about my patient of many years ago and how he was so upbeat. I needed to channel his positivity.

Finally, I was referred by one of my physicians to yet another specialist, 3 hours away. She looked at my clinical situation with new eyes and did more testing. This test ruled out one of the biggest concerns.

She then initiated a steroid taper as a start. The biggest joy is she is allowing me tiny amounts of bland food. After 6 weeks of no food, the pleasure of one spoonful of peeled, steamed yellow squash was utter ecstasy.

I will never again take eating for granted. I have always been health focused and seen food as fuel for my body. Now it will always be both fuel and pleasure.

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I hope my new specialist can determine the cause of the abdominal pain. Advancing my diet is the goal. I have been visualizing yummy meals since I am Italian and love to cook. Getting back in the kitchen to whip up some of my favorites is my dream now.

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At the time, admitting them to the unit was so time consuming because they were on so many medications, plus a list of diagnoses and allergies just as long.

My memories are vivid. What happened to these patients to make them so sick? How did they end up on so many medications?

The most prevalent remembrance though, about most of these patients, was their personalities. Most nurses will know exactly what I am describing. They were cranky, ornery and just plain miserable. Of course, they did not feel well, so some of that behavior was understandable, but they had an overall presence.

It was difficult to please them. The room was too cold, or too hot. The coffee you brought them was bitter. The medication was not on their time schedule, no matter how many times you explained that you had to follow the doctor’s written orders. You didn’t bring them enough blankets or pillows. I think you get the idea. There was no pleasing them. They were just plain miserable. Life had dealt them an unfair hand, and they wanted everyone to know.

I would have preferred to care for three post-operative patients in place of one negative chronically ill patient.

When I was diagnosed with my first chronic illness, I made a very conscious decision to never be like those patients. No matter how much pain I was in, or how difficult the treatments were, I would not be that cranky woman.

Fast forward to today. I now have two genetic diseases, three autoimmune diseases and two “normal” diseases. I am that 69-year-old patient on a very long list of medications. I see some medical assistants roll their eyes when I go to a new physician and they need to review each medication and dosage.

I have specialists in three states, plus a few in my own state. I am called a complex patient by all my physicians. Some just refer me on to others, not knowing how to care for me.

My resolve has remained strong though. I remind myself daily that I do not need to be the miserable patient. I have a choice. I can be pleasant to all my providers and their staff. Being negative is counterproductive. It will not increase my likelihood of achieving favorable healthcare.

More importantly, I feel better, and so do the people around me. My family and friends always remark that I “look so good”. I can assure you (and them), that I do not feel good, but a smile makes a massive difference in how you feel. I smile every day.

I shower daily, even if I feel fatigued. I sit on a shower bench. Then I must rest for quite a while. But my spirits are lifted by being fresh and clean. I get dressed even when I am going nowhere, which is most often the case.

I haven’t been able to eat solid food in over a month, but I make protein shakes and blended food to manage my nutrition.

Until I am more stable, I will fight like hell to move forward, because I will always choose to be that positive patient. Oh, and I should add that having a therapist who supports me 100% has been critical to my outlook.

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Chronic, complex illnesses are not simple, straightforward lifestyles. We can rewrite our narrative and improve our outlook. Even people who are dying can do so.

I wish you the same in the insanely complex healthcare system we are in right now.

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Peace and love to you all,

Jan

Since I have spent over three decades in healthcare, I have seen the shifts in both hospital and office-based care. I remember when a knee replacement was a 7-day inpatient stay, followed by rehab. Fat chance of that happening now.

When you have a chronic illness, an office visit is your lifeline to managing this beast that dominates your life. Yet, you are lucky if you get the 15-minute time allotted by the giant corporation that owns your physician’s practice, or the insurance company that dictates how many patients your physician must see a day.

When I was initially diagnosed with the first chronic illness, I was overwhelmed. It was genetic. I had passed it on to my children. Feelings of guilt, grief, fear, and isolation were daily occurrences.

How was I going to manage this disease when the diagnosing physicians gave us so little information? Would we get worse? Our local physicians had heard of it but only knew what the specialists had sent them in the report.

I researched and read everything I could find. But this was in 1988. Not much information was available.

So, I did what I now recommend for anyone with a chronic illness. I contacted the national organization for this genetic disease. I had found them online. At the time, they were a small organization, started by a woman who had the same genetic disease and saw the need to connect with others and bring the community together.

That organization has grown and morphed into an international society, raising millions of dollars for research, advocacy and education.

I found my “home”. Over the years, I not only attended support groups, but I started one locally and was astounded to find people just like me were also feeling alone.

The organization provided written educational resources for patients and healthcare professionals. This was important because surgery was riskier. It also helped healthcare providers recognize the symptoms earlier.

One of the roles of national organizations is to set guidelines and best practices. The Ehlers Danlos Society, my genetic disease, developed a diagnostic checklist that can be utilized by any healthcare professional. It was perfected by a group of international physicians who specialize in this genetic disease.

Another essential function is conferences for both patients and healthcare professionals. Typically, there are days dedicated to patients, to educate and allow time for questions. A separate day is for continuing education for healthcare professionals.

I have attended these conferences, and they never disappoint. I learn something new and exciting at each one, since research is also a goal of the organizations.

Being a patient advocate has always come naturally to me as a nurse, but usually for my patients. I have been learning to advocate for myself. As my grandfather used to say, “The squeaky wheel gets the oil.”

So don’t wait for your 15-minute visit to try and get all your answers in that small time slot.

Join a national organization. Advocate for yourself. Attend a support group meeting. Get all the resource information they provide. Go to a conference, especially since many are also virtual now. Speak up, speak out. Volunteer for the organization. Learn as much as you can.

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The next time you go in for your 15-minute visit, you will be more informed and ready with your quick 5.

Advocate tip: your quick 5 is a bullet point list of the top 5 things you want addressed that can completed in 15 minutes.

I would love to hear comments from others managing chronic illness or just dealing with our flawed healthcare system. Either as a member working in the system or a patient.

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Before that trip, we were sent to a local orthopedic surgeon who evaluated my son after he had experienced multiple dislocations of his patellas (knee caps) and elbows. My daughter’s elbow had dislocated once but the ER had just called it “nurse maid’s” elbow and said it was fairly common in little kids.

During the orthopedic evaluation of my son, he asked me to come closer so he could look at my eyes. 👀 I thought it was very odd. Then he explained that the whites of my eyes had a blue tint. The sclera (white part) is made up of collagen. In some connective tissue disorders, the collagen is thin or weak, so the sclera is more translucent. The orthopedic surgeon was convinced that we had a connective tissue disorder. He then referred us to the Joint Disease Hospital for an evaluation and advised we bring my daughter as well.

The day at the hospital was intense. We all were evaluated by a geneticist, rheumatologist, orthopedic surgeon and physiatrist (physical medicine and rehabilitation specialist). We had blood drawn, X-rays taken and answered numerous questions.

At the end of this long day, all the physicians conferred and met back with us. Their diagnosis was Ehlers Danlos syndrome Type III. Very little information was given other than it was a connective tissue disease that affected the collagen in our body, the “glue” that holds us together. They also advised it was a genetic disease, autosomal dominant, meaning 50% chance of passing it on.

We were told that dislocations and subluxations (partial dislocations) are common, heart valve problems require regular echocardiograms and the kids could not play any contact sports. Just “be careful”.

There was no other follow up required with them. This was the beginning of our medical odyssey. No instructions. No information.

I had previously gone back to school for nursing. Not only was I studying non-stop to complete my nursing degree, but now I needed to learn about this genetic disease.

This was just the beginning of my never-ending search for information about my medical conditions. The healthcare system didn’t provide the necessary education and guidance 32 years ago. Sadly, I still struggle with it, even as a healthcare professional.

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Being a patient is my least favorite side. I am very good at taking care of others, providing education, guidance and compassion. When I am sick, I falter.

I was born with two genetic diseases that I was able to manage fairly well until my 40’s, although I required several surgeries.

Then in my 60’s I was diagnosed with an autoimmune disease. Next came the second autoimmune and then the third. Multiple autoimmune diseases often occur together for different reasons: genetic, HLA genes, environmental factors and immune system dysfunction.

Here is where it becomes so tangled. Medicine is an art, not a science. I know not all will agree.

No one physician treats all of my medical conditions. Each one requires a specialist, although the autoimmune diseases theoretically could be treated by a rheumatologist.

Due to one of my genetic traits, I do not tolerate many medications. I have been sent to specialist after specialist. Major academic center after center. I have been across the country and back.

I have been told by some of the best specialists that I am “too complicated”, “very interesting” or just “I’m sorry, we can’t help you”.

Next month, I will be traveling yet again, to another specialist, who hopefully will be able to manage my most problematic autoimmune condition.

Medicine has become so siloed. I have all these specialists who don’t talk to each other. I get it. No one has the time to have lengthy discussions with another provider about a complex patient. Health insurance dictates the number of minutes a physician gets to spend with each patient. They are all overloaded.

I have worked for many years with physicians. Most really care. Our system is broken. Patients like me are unable to receive the care they need.

I am lucky because I have a medical background and I can advocate for myself. I’m a fierce advocate. I keep detailed notes, but time with physicians is always limited.

How do we survive in our present system? There are many of us out there trying to navigate this difficult scenario. I am blessed because I have a physician colleague who has helped me coordinate much of my care. And on to the next physician…

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He would tell us about a sweet older lady who would occasionally come out and give him a cold glass of water when he delivered her mail. My dad was so grateful for that water and for the kindness. Each time he would share how cold the water was, how thirsty and hot he had been and how incredibly thoughtful this woman had been to think of him.

Such a small gesture made such an impact on not only him but our family. We all remember that story, all these years later.

My dad has been gone for 16 years now, but I remember him in a way that I think would make him smile.

I keep a cooler on my porch packed with cold drinks, ice pack to keep them cold and lots of snacks. I have a sign on the top for all delivery people.

I think I know why that lady gave my dad that cold drink of water. It brought her joy. I love to watch the delivery people on my doorbell camera as they go in the cooler and help themselves to drinks and snacks.

Some just grab and go. Others wave and say thanks. I have seen so many interesting responses. Dances. Bowing down. Laughing. One guy yelled, “Yay! I forgot my lunch today.” But each time, I think of my dad, drinking the cold glass of water in the summer heat.

As he walked in the door, “guess what, my little friend gave me a cold glass of water again today.” Are you watching dad? Miss you so much.

When I started college the second time, I wanted to be a social worker, but life’s circumstances led me to another path. I switched over to nursing with the goal of returning to social work when I was financially able since I was now a single parent of two.

But to my shock, I loved nursing! I started in orthopedics. This was in a trauma center, so I saw a lot of fractures, spinal injuries as well as joint replacements. Part of nursing care is teaching. Many of my patients went home with braces and assistive devices that enabled them to walk.

I had several other jobs during my nursing career and ended with nurse educator. This required collaboration and research with a team of physicians, nurses and scientists.

Throughout these years, I was diagnosed with two genetic diseases, three autoimmune diseases and some “regular” conditions caused by either the genetic or autoimmune diseases.

The absolute beauty of this experience is that I was able to advocate for myself. Since the one genetic disease causes joint dislocations, I knew what type of braces I needed. When I lose my balance from another condition, I have specialized crutches. How many patients had I taught to walk with crutches? Too numerous to count.

The other genetic disease is not yet commonly known by most physicians, so I am able to bring research material to them. It also causes me to experience anaphylaxis with medication, so choosing medications for my autoimmune diseases is a collaborative effort.

My goal, since I went to nursing school decades ago, was to help others. It still is. Little did I know that I would also be helping myself navigate the complexities of the medical community for my own care.

Do you have a special friend who will listen to anything you have to say? Who is willing to let you share all your deepest thoughts and fears? I do.

When I’m not feeling well, I can share how frustrated I am about my health. If the latest medication isn’t working, it’s okay to tell her how I’m worried we’re running out of options. And then when one drug does work, I will tell her how elated I am that I have gone one week with good energy and feeling better.

Spring is my favorite season, so I tell her how excited I am to see my pear tree blossoms, lilac bush blooming and day lilies growing. She patiently listens as I eagerly tell her about the birds, baby squirrels and abundance of bunnies roaming in my yard. Does she care about all of this? Not likely.

This old Italian mama loves nothing more than to have her adult kids visit. I tell my friend all about food I cooked for them, the funny stories they told me and how much I love them. She hears this a lot.

Who is this faithful friend? My journal. Since I am often unable to get out (which isn’t so terrible as an introvert), I have had a many years practice of journal writing. I am able to share all my thoughts in my journal. She is truly my most faithful friend, never betraying me, never letting me down. She knows more about me than anyone.

She also knows how grateful I am because I end each journal entry with 5 gratitudes for the day. Today, my first gratitude is all of you reading this.

I’m writing this post because I believe in the power of connection, especially among those of us navigating life with chronic conditions, a quieter nature, and a deep well of lived experiences. I know I’m not alone- and neither are you.

This space will be a mix of personal reflections, hard-earned health insights, observations about aging, and maybe even the occasional note on finding beauty in solitude. It’s not going to be all serious; I believe humor and honesty can sit side by side.

I’m hoping to build a small, thoughtful community here. If you’ve ever felt like the quiet one in a noisy world, or you’re navigating the complex terrain of health, aging, and identity, I’d love to hear from you. Jan