Leaving Alabama

At the end of February life took a complete 180 degree turn. My husband suddenly lost his job and therefore we lost our health insurance. With the frequent hospitalizations I required we knew we couldn’t be without insurance. Plus, we needed income from somewhere to pay our bills.

Will looked for jobs in Alabama, but the market had little to offer. We also were wrestling with the fact that we didn’t have family left in Alabama to help us through difficult times. I was frequently facing hospital trips alone, while Will tried to carry the weight of everything else by himself. This all required us to take a hard look at our options and make a big decision.

My family encouraged us to move back to California to receive familial support, greater job opportunities, and a social safety net that offered health insurance.

Moving across the country seemed daunting, so we decided to visit for one week and decide from there. We put on masks and gloves (before it was required for COVID) and traveled to San Diego. It was frightening to travel that far while I was so fragile, but it was important to figure out what our options were.

Within a few days of arriving in San Diego I required a trip to the emergency room. My heart rate was uncontrolled and I was emptying my bag 12+ times a day. It was apparent my dehydration had gotten worse. Upon arrival to the ER, my blood pressure dropped to 75/40. I was admitted to the step-down ICU and monitored closely.

During that admission the attending physician decided to run basic blood work and stool study tests – something she assumed had been done many times before it Alabama, but was standard practice for these symptoms. To her shock (and mine!) the stool studies came back irregular. I was positive for C. Diff. For more information on this admission and C. Diff read “Wasting Away.” Within two weeks of receiving this diagnosis and being treated with the proper antibiotic, my output was solid again, I was able to eat regularly, and I felt strong.

Through this experience, it became apparent moving to California would be the right decision. So we flew back to Alabama, packed up our house, sold it, and drove across the country with two U-Hauls, three pets, and nothing but new possibilities.

The drive was long, but beautiful. And with my increased stamina and health I was able to do it without any medical issues! We ran into minor inconveniences due to COVID (like all the restaurants being closed.) But it was a terrific experience to see the country with Will.

Within two weeks of moving to California Will got employed at an HVAC company that truly values its employees. He feels supported, appreciated, and valued already. We are beyond thankful for his company and the opportunity they’ve given him.

With the improvement in my ostomy output, I was able to get the mediport removed from my chest wall. I cannot express how grateful I am to no longer require maintenance fluids to sustain hydration. Having the port was scary and dangerous. While the obvious benefits outweighed the possible side effects, I suffered multiple rounds of sepsis while my port was in place. It feels great to no longer have that risk looming over me. Soon I will be back in the work force, with the physical stamina and mental capacity to handle anything.

We will always be fond of our time in Alabama, and of the friends who became our family there. But we truly believe this was the best decision for our health, happiness, and future security.

Wasting Away

It’s been difficult for me to write another post. I started and stopped more times than I can count. Each time I began I felt tremendous sadness and disappointment. This was because I couldn’t read anymore. I couldn’t write. My brain fog had gotten so bad that I lost control of my most basic functions. I would start a sentence and forget the point I was trying to make. I could no longer think of simple words, let alone write paragraphs. I had to let go of things that used to make me happy, like writing my blog, because my brain wasn’t processing at my usual rate.

This brain fog was due to severe malnutrition and dehydration. My symptoms were so bad that I couldn’t walk without the assistance of a walker. I couldn’t eat more than a few bites of food. My output transit time was less than 30 minutes. I had to receive IV hydration twice a week to survive. I was hospitalized every few weeks. I was wasting away in front of my husband’s eyes. And he was fearful I was going to die.

Truthfully, I was scared I was going to die too.

For months I advocated for myself with doctors, pleading with them to figure out what was wrong with me. But no one could figure out why my output was straight liquid. They couldn’t figure out the source of my severe pain. They tried to treat the symptoms with hydration fluids and pain medication, but the underlying cause was still unknown. I tried every medicine they threw at me. I even went on TPN to try and improve my nutritional status. But nothing changed.

As time went on I began to believe it would never get better. I began to feel the crushing weight of my medical problems (and the crushing weight of the medical bills piling up.) I was scared, my husband was scared. and my family was scared.

At my wit’s end, my family flew me to California to receive treatment from a renowned hospital. I was discouraged that anyone could figure out what was wrong, but knew my care in Alabama was subpar. So I agreed to fly out and be treated at Sharp Hospital.

I was blessed with an amazing physician and outstanding nurses who really listened to me! Within a matter of just a few days on the floor the doctor determined what was wrong with me. She diagnosed me with C. Diff. She was confident that with proper treatment I would make a full recovery.

C. difficile (or C. Diff) is a severe infection that causes people to become dehydrated and sometimes need to be hospitalized. Signs and symptoms of a severe C. Diff infection that I had include:

  • Watery diarrhea 10 to 15 times a day
  • Severe abdominal pain
  • Rapid heart rate
  • Low blood pressure
  • Fever
  • Blood in the stool
  • Nausea
  • Dehydration
  • Loss of appetite
  • Swollen abdomen
  • Increased white blood cell count

Those symptoms plagued me for months. I continually was admitted because of my unsafe heart rate and low blood pressure. Somehow the doctors in Alabama missed this infection, or didn’t treat me properly if they did test me for it. At first I was frustrated, but I realized that being angry would help nothing.

Instead, I am choosing to be excited about the improvement in my health status; I am thrilled to say that after two weeks on the oral antibiotic I am finally improving. I have color in my face again. I am eating three meals a day. I am walking without assistance. I can read and write again. I am no longer wasting away.

I am proud of how hard I fought this past year to stay alive. I am proud of my husband for staying positive and staying with me throughout the hellacious period. I am grateful for my family for never giving up on me. And I am thankful for every one of you who helped us through this.

Moving slow; healing in 2020.

I am moving slow. My bed time is early and I sleep in late. I am healing. I push myself when I need to and let myself rest when I should.

It scares me… the slowness. Because I have by been conditioned by our society to believe that if you are not constantly busy that you are failing. I have been taught that career is most important, often at the risk of ruining yourself.

Because of my frequent flare-ups, I have to make some major lifestyle changes. I am using the new year to reestablish my good behaviors and encourage some new ones to better heal.

My first lifestyle change, career:

I left full time work over one year ago. I had a stressful, exciting job I loved, but couldn’t maintain while I was sick. After my surgery I decided to step back to part-time work. But even those reduced hours were still too difficult to maintain with months of hospitalizations last year. So I left my career completely to instead focus on myself.

Both the idea, and the act, of not working are stressful. On my good days I feel guilty that I am not providing in the same way I once could. On my bad days I stress out that I will never be healthy enough to work. But now I know that if I do not take this season to rest and recover, I may never be healthy enough. So instead I am moving slow.

My second lifestyle change, sleep:

I am allowing myself to sleep as often as I need to. Instead of feeling guilty for letting go of the “go-go-go” mentality, I now rejoice in my body’s healing ritual. I take naps, which are especially rewarding when the dogs snuggle up with me. I am grateful I do not have a job that demands I wake up early, because this rest is rewarding.

My third lifestyle change, social support:

I struggle with isolation when I am sick or depressed. I tend to spend time by myself and distance myself from those I am close to. But recently I have tried to reach out to my friends, family, and support staff when I am in need of help. Or just to hang out. Asking for help when you have a chronic condition can be challenging, because it seems like you always need help. But I am working on transforming my mindset to realize people want to help and that social support is a vital function to humanity. So where I can give, I will; and where I need it, I will ask for it.

My fourth lifestyle change, cooking:

I feel tons better when I prepare home cooked meals. It’s often easier to pick something up, but even “healthier” quick eats can be loaded with tons of junk. Eating home cooked, good quality ingredient meals is better for my gut and for my mental health. I have more energy and time to make my meals since I am not working, which I know is a blessing.

It’s been a grueling road to recovery. And I am not yet healed. But these changes have made the process better. All of these lifestyle changes build on each other. I am not advocating everyone adopt these changes, because I know they can be challenging for numerous reasons, and may not be what your body needs. But I am encouraging you to evaluate your life and determine what may be adding to your chronic illness.

2019: A year in review.

2019 was a challenging and trying year. I felt immense stress the entire year because of my health issues. I did not go longer than a month without a hospital admission, including the hospital admission I am currently having. In total, I was hospitalized for over 70 days this calendar year, meaning I missed over two months of my daily life. This put a strain on my marriage and our finances since it resulted in me no longer working. The financial struggle that came with that decision has not been easy. Neither has the emotional toll it’s taken; I loved working and always found my sense of self through my job title. The transition to not working has made me have to reevaluate my self worth and work on my self esteem. 

There were definitely difficult moments in my relationship with Will this year, but we are now stronger than ever before! We decided our communication was the greatest of importance. We strived to speak honestly and openly with each other, knowing that each of us was coming from a place of love and utmost commitment to our marriage. We had our fights, but we never let them overshadow the growth we were making. We learned from them and let them make us better individuals and a better couple. 

While it was the most taxing year we’ve had since being married, there have been some truly beautiful moments in between the pain. For example, we began the year by taking our honeymoon vacation to Florida. We also had the opportunity to travel to California to visit with my family. We experienced Diane getting married to an incredible man. And we found new friends and a new hobby through Wolfpack Game Night. 

As I reflect on the past year, I cannot help but be saddened by the state of my health. I have dealt with depression and anxiety throughout my entire life, but it was especially challenging to overcome my demons in 2019. However, I am very proud of myself because I did not revert to negative coping mechanisms like I have in the past, such as purging or self harm. Instead I chose positive stress relieving activities, like drawing, meditation, and exercise. This made the bad times manageable and the good times even more enjoyable!

I have set some goals for 2020 that I intend to stick to, like regaining my independence and maintaining 30 minutes of both creative and active activities a day. I have also pledged to eat healthier and make self care a priority. 

I hope 2020 brings less chaos and more love for all of us. I hope you set goals for yourself and work on improving yourself. Even if you do not meet your intended goal, or have to adjust it after four months, just deciding that you want to better yourself is powerful and can result in change. 

Here are a selection of memories from 2019 for you to peruse and enjoy. I know these photos bring me joy and return me to times filled with laughter and love. I hope they do the same for you.

Happy new year. – Jules













December update.

It’s been a hell of a month. Just before Thanksgiving I was hospitalized for sepsis (a bacterial infection in your blood.) I had a high fever, low blood pressure, and fast heart rate. The pain was unbearable too. My whole body ached and I felt so weak. I cried for two days, partly due to the pain, but mostly from the frustration. Questions like: ‘Why am I sick again?’, ‘What did I do to deserve a life of constant illness?’, ‘Will I ever be recovered?’ circled in my head, spinning around like an uncontrollable top. I felt hopeless and completely discouraged.

While the sepsis improved through nightly IV antibiotics, my nutritional status continued to fail. At the time of my admission my electrolytes were dismal. For example, my phosphorus level was undetectable and my magnesium, calcium, and potassium all had to be replaced. As the doctors tried to replenish these, they found the oral route was insufficient. So they moved on to replacing it through my port (intravenously.)

With minimal improvement even from the IV electrolytes, it was determined I was a candidate for total parenteral nutrition (also known as TPN.) This type of nutrition is not processed in the gut, therefore is better absorbed by people like me. It is composed of broken down lipids, proteins, vitamins, and electrolytes. The nutrition runs for 24 hours a day through a port, which is as disrupting as it may sound. Even things like using the restroom and taking a shower are affected by the bag.

I struggled with thoughts of despair, inadequacy, and fear throughout this time. I felt like I was at my wits end with my health status. I was tired of being sick, tired of endless doctors appointments, tired of only having the energy to move from the bed to the couch, and tired of not working.

While recovering from all of this, we received news that my father in law passed away unexpectedly. It added sadness, stress, and more emotion to an already difficult season. We will miss Jack and his infectious laugh. His presence was always warm and friendly and he had a great way of telling stories.

Jack’s passing from an acute health condition made me appreciate the life I have and the chance to do all I can to improve my own status. I will continue to eat well, exercise, and get restful sleep as a way to combat the fact that life can end in a moments notice. I want to do what I can to remain healthy, even if I can’t control everything that happens to me. 

In total I completed TPN for just over a week, then had my electrolytes rechecked. Luckily everything was good and I was able to return just to my regularly scheduled maintenance fluids instead of the full nutrition. The lactated ringers are much easier to manage. I only have to hook up to them for a few hours a week, instead of 24 hours a day as with the TPN.

Great news is I may even be able to stop the fluids in a few weeks! My doctor is going to discontinue me after 5 more weeks and see how I do. I am hopeful I am moving in the right direction and that I will not need the fluids in the future.

Overall I am feeling much better. I have started exercising again, which is an activity I truly missed over the past year. I am going slow (and not lifting any heavy weights above my head) until I feel stronger and healthier. But having the ability to go to the gym and feel productive is an amazing feeling. I don’t feel like I am at odds with my body anymore. I am working on talking to it better, feeding it better, and resting when I need. This combination seems to be facilitating healing.

Stomaversary: Happy first birthday Diglett.

It’s hard to believe, but it’s been one year since I underwent ileostomy surgery. I had a weeks notice that I was going to have the surgery and there was so much to adjust to! First, and most importantly, I had to bond with my stoma, and invite him to be part of me. Will quickly suggested we name him “Diglett” because he thought a stoma looked like the little, brown Pokemon. I thought the name was perfect: unique, fun, and quirky. Because of this I have been able to connect deeply with him. I talk to him, laugh about the noises he makes, and thank him for helping me. I wanted to celebrate the surgery, the past year, and the people who have helped me get through the transition.

The surgery was hard and long. I was under anesthesia for 6 hours. I woke up in pain and truthfully was freaked out by my bag. I was worried I wouldn’t be able to change it myself, that people would judge me, and many other anxieties. But I was also excited. The surgery meant I wouldn’t experience pain as often, debilitating diarrhea, or as many hospitalizations. Or at least I thought…

If you’ve followed the blog you know this year has been a challenge and a major adjustment. I still have high ostomy output, which causes dehydration. I have experienced pain frequently. And I have definitely had my fair share of hospitalizations. I require home health twice a week and 4L of IV fluids just to function.

Although these may seem like huge negatives that wouldn’t make the surgery worth it, I disagree. Diglett has allowed me to eat food again – almost anything I want! Prior to surgery I was limited to about 5 different foods and if I strayed at all I would have terrible symptoms. After the first month of my recovery I started adding different foods back into my diet. It has been so freeing.

The first month after surgery was exhausting. I was not allowed to lift anything more than 5 pounds (which, dang, everything weighs more than that!) Luckily I had the best support system. My dear mother flew in from CA to be with me the entire hospital stay and for a week when I got home. She cooked, cleaned, organized my house, and helped in every way possible. We would not have survived without her. Next, my mother and father in law came in town to take over when my mom had to leave. They helped with cooking and driving me to doctors appointments. My father came in town several weeks later to drive me to all the post OP appointments and generally help out. We were lucky to have had such a wonderful team.

My husband stayed at the hospital with me the first night, but had to keep working in order to keep our mortgage payments and other bills paid. He worked so hard on the clock and then came home and helped me every day. I am still in awe of the sacrifices he makes to help me heal.

After surgery I tried to go back to work part time. It was a struggle because I was dealing with bag leaks, pain, and dehydration. I had to miss a lot of days and was completely drained on the days I was there. Will and I made the decision that I was not ready to work yet. And am still not. With nearly 40 days inpatient in the hospital this year, I’ve been unable to reenter the workforce. So Will has graciously become the sole provider in the house. He puts in long, hard days every day and then still finds the time to help at home. I am so grateful for his sacrifice and his love.

I’ve also be lucky enough to have amazing friends stand by us this past year to help with meals, car rides, and emotional support. So I decided I wanted to thank all of them with a party… a way to celebrate the good things that have happened this year and the promise that things will continue to improve.

The party was medical themed. We played lots of games, like “Medical Bingo”, “Pin the Ostomy on the Stoma”, and “Operation.”

We also ate “Tylenol” (which were frosted Nutter Butters) and took “pills” (Skittles).

We also drank “blood” out of IV bags (koolaid).

We laughed, we danced, and we had an incredible night celebrating instead of focusing on the negative.

I want to thank everyone that has offered us support this year. We know that behind our success there is a village of people who has helped get us here. I am encouraged 2020 will be even better, with fewer hospitalizations!

Dysautonomia, POTS, and IV hydration.

My whole life I have struggled with syncope, or passing out. During these episodes my blood pressure drops and my heart rate skyrockets. While I have experienced this for many years, it wasn’t until August I finally received a diagnosis: postural orthostatic tachycardia syndrome or POTS!

According to doctors, POTS is a type of dysautonomia* that is defined by “orthostatic intolerance”, which means when a person stands up, a large amount of their blood pools in their legs instead of circulating back up through their heart. While blood pressure decreases, their heart rate goes up. A healthy individual usually has a slight increase in heart rate, by about 10-15 beats per minute, within the first 10 minutes of standing. POTS is considered present if the heart rate increases by 30 beats or more per minute for adults. I wore the Zio Heart Monitor for 48 hours. Over the course of two days my heart rate was recorded at >190 multiple times after standing indicating a severe case of POTS.

In order to be diagnosed I went through a battery of other tests with a cardiologist. I had a stress test in which my heart rate elevated to 202bpm, a tilt table test which resulted in my blood pressure dropping to the low 80s/40s, and an echocardiogram. Luckily my echo was normal, showing no structural defects.

POTS can be extremely dangerous. My heart rate averages 100bpm and is frequently much higher. I have made some life style changes and medication changes to deal with the orthostatic tachycardia and hypotension, but still have syncopal episodes and have hit my head multiple times. First, I am now on a low dose beta blocker three times a day. Most importantly, I always sit up on the edge of the bed for an extended period of time before standing up. Next, I wear compression stockings – especially when walking a long distance. I take salt tablets in the morning and salt my food. Lastly, I drink a LOT of water. But because of my high ostomy output that causes severe dehydration, I have to get IV hydration too.

My IV pole.

I have a home health nurse that comes twice a week to access my mediport and hook me up to a special kind of fluid called lactated ringers. They have added supplements, like potassium and glucose to help with my malabsorption issues.

The process takes about 5 hours total. I simply sit up in bed while the fluids rehydrate me. I do activities such as drawing and blogging, or when I’m feeling bad I’ll just nap.

My IV setup.

The fluids help immensely with my symptoms. Before receiving a bag of lactacted ringers my heart rate can be 130-150bpm and I can feel lightheaded, weak, and shakey. Then I have the fluids infuse and my heart rate will resolve to 90bpm and I feel better.

I am very thankful for finally having a diagnosis, although the symptoms are hard to manage sometimes.

*Dysautonomia is a term that refers to group of conditions that affect the automatic nervous system. October happens to be Dysautonomia Awareness Month! If you have any more questions please visit the contact page.

Road trip: tips and tricks for traveling.

After months of not feeling well and not having the energy to do much of anything, I had a nearly three week streak of feeling good! Will and I decided to take advantage of my strength and energy by going on a road trip to Austin, TX. We traveled from Alabama to meet my sister and brother in law. The trip was incredible, including the best meal of my life, live music, and lots of quality family time!

Me with a mocktail

Overall I felt great for the whole trip. I was worried about dehydration due to changes in diet and more activity, but I stayed diligent in drinking water and finding healthy foods even when stopping quickly on the road.

It was such a wonderful experience to be out with my husband and family. Seeing Will and my brother in law, Robert, get along so well made my heart happy! Spending time with my sister, Shawna, brightened my spirits and inspired me.

The Saylers and Winfrees

We traveled with Walter, my service animal, which was so rewarding, but also came with unique challenges – some of which I had not anticipated fully. In this post I will discuss tips for traveling with a service dog, keys to successfully staying healthy while traveling, and important things to remember when you have an ostomy.

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Walter and Diglett at a rest stop.

Ostomy & medical tips:

An ostomy should never hold you back from doing the things you want to do to. That is especially true for traveling! My ostomy actually allows me the freedom to go different places, eat new foods, and experience different environments without the fear of problems. There are some very important things to remember when traveling with an ostomy, however. The three most important things I strive to do is hydrate with water often, bring extra ostomy supplies, and always listen to my body.

First, and foremost, HYDRATION IS KEY. On a normal day an ostomate should take in over two liters of water. But the stress of travel on your body and changes in diet can result in dehydration quickly. Drink at least two liters, but increase that amount if you feel lightheaded, weak, or notice your output thinning. Avoid alcohol, as it accelerates dehydration in the body.

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Myself with the most important thing: WATER!

Next, make sure to have enough supplies for the length of your stay. I always bring extra bags and wafers in case of an emergency leak. If you will be in the ocean or pool bring even more, as the prolonged soaking and/or chemicals in the water can wear out your bag faster. Luckily I did not have to change my wafer at all over the trip, but did replace my bag once.

On a related note, bring extra medication in case your trip gets delayed. I also recommend bringing some PRN medicines, such as nausea and pain medication, in case something arises. Due to the change in diet, over the course of five days I needed several doses of Zofran. It truly was a life-saver.

Super important: WASH YOUR HANDS AND USE HAND SANITIZER. This is sound advice even when you are not traveling, but especially if you are going to be in more public places during your trip. Rest areas are used by hundreds of people a day and are crawling with germs. In order to avoid picking up a virus, wash your hands often.

Service dog tips:

• Bring any documentation for your service animal you have in case the hotel requires it.

• Travel with a crate so you can board the animal if necessary.

• Have a travel water bowl that you fill up multiple times a day, especially if it is hot outside or you are walking more than usual.

• If driving, stop often to let your animal go to the bathroom and walk them at least 15 minutes each time. Traveling in a crate for long distances can be stressful on a dog. In my experience, most rest stops have a grassy area suitable for walking dogs.

• Remember that if you are in a new place your dog may need time to adjust to the new smells, people, and environment. They may become overwhelmed. So, listen to your dog and be patient throughout the trip.

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Walter at Waffle House.
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Feeding Walter at a rest stop.
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Walter in the hotel.
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Walter on a walk through Austin.
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Will with Walter at The Salt Lick BBQ.

I would recommend Austin to anyone looking for an exciting weekend. We enjoyed all the wonderful food, including my favorites III Forks Austin and the Salt Lick BBQ. We sang and danced at Darwin’s Dueling Piano Bar. But most of all we just enjoyed each others company. I miss the Saylers already and look forward to our next trip.

For now, I will stay on fluids and rest for the next week because this trip was a lot! But in the best way possible.

In sickness and in health.

As I sit in yet another hospital bed, awaiting yet another test, I feel myself becoming more anxious and frustrated. Not for myself – I have dealt with this most of my life – but for my husband. “How will another night in the hospital affect him?” I think. And the question, “Is my chronic illness hurting my marriage?” plays through my mind.

I know the answer he would give is “No!” But sometimes I struggle with the idea that it’s more out of obligation he says that than reality. Because how could it not be hurting him? To be the only functioning member in the marriage. To be both the provider and caretaker. To have the worry always be about me. I struggle internally every time I have to go to the ER because I know it means another missed work day for him. I see the stress and wear on his face everytime I grimace in pain – partly out of concern for me, but also out of fear for how we will pay another bill.

We have been married almost two years and within that time I’ve been in the hospital for several months of it. I could try and quantify the amount of different ER trips and hospitalizations we’ve had, but it would be really challenging.

He does his absolute best to come see me when I am hospitalized, even though he works more than full time and lives an hour from the hospital. Somehow, he still finds the strength to come sit with me and keep me company. All while also keeping up with two dogs, two cats, and a million other responsibilities. He’s incredible that way. But I know the strain having to come is on him.

On days not in the hospital I still struggle to be the wife I promised. I always planned to cook, clean, and help financially. But those goals keep slipping further away and I’m left with barely being able to bathe and clothe myself without his help. His sweet patience and calm demeanor make me fall more in love with him every day.

Still, I struggle with my purpose and what I offer to the marriage. Not because of the way he treats me, but because of my own expectations and desires. I also struggle with our sex life and fear I am not performing to his level of needs. I wrote much more in depth about my fears in this post. But the basic point is that even sex is different in a relationship with someone who is chronically sick. Because a chronic illness doesn’t just burden the patient, it burdens their partner too.

Will loves me. He nurtures me, cares for me, and provides for me. And our marriage continues to grow stronger with every challenge we face. We face them as an united front and make decisions together. We have had the vow “in sickness and in health” challenged over and over. But each time we dig deeper and discover new strengths we did not have before.

Being sick has not been easy, and never will. However, having Will on my team has made it manageable. He does so many helpful things, from little tasks like giving me my medicine, to huge things like paying the bills. He comforts me when I cry. He holds me up when I feel like crumbling. And he encourages me every day that I can (and will) get better. He now acts as my health advocate and can accurately describe my health history. His anxieties left him unable to go to the hospital with me when we first got together, so the transformation has been huge.

I encourage those in a relationship to have honest, open communication. Feeling safe enough to express all fears, frustrations, and abnormal thoughts transformed our marriage and helped my anxiety. I encourage you to check in with each other regularly to discuss finances, health status, and stress levels. Having a set, weekly conversation is a great way to start tough discussions and be honest about anything that may be straining the relationship. (This is advice I share with all people in a relationship, but it is especially poignant for those with a chronic illness.)

Will and I will continue to work on our marriage and seek new ways of dealing with the onslaught of negativity coming our way. We will communicate, support each other, and commit to our vows. I hope you do, too!

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