Pictures at a pumpkin patch

Julian, CA 10/25/20

I am two weeks out of surgery and was in need of some fresh air! After nearly 20 days inside a hospital sunshine is exactly what the doctor ordered. So Will and I drove to Julian, CA to find a pumpkin patch.

Funny story, at our house in San Diego it was sunny and 73 degrees. As we drove through the mountains we discovered the temperature had dropped by nearly 30 degrees, it started raining, and we were in a wind advisory area. Safe to say we changed our plans and drove right back down the mountain.

Hope was not lost yet, though, as we neared the end of the road there was a huge pumpkin patch and corn maze with available parking! Even more importantly it was significantly warmer and not raining. So we pulled out the camera and found our way through a maze of corn.

It was wonderful spending the afternoon with my husband. Throughout the hospitalization we were not able to see each other. COVID19 rules dictated no guests were allowed.

Truthfully, it took a toll on our relationship. We had started getting into routines and using coping mechanisms that didn’t involve the other person in order to survive. While it was necessary to get through the battle of surgery, it was damaging.

Even when I got home things felt harder than usual in our relationship. Normal, easy conversation felt like work. I could feel us getting frustrated with each other easily. We also would miscommunicate about minor things then find ourselves in a full argument minutes later.

Luckily, we addressed our issues head on. We both came to each other wanting to improve. Through dedicated time together, increased intimacy, and special dates just for us, we discovered the fun of each other again. We realized the really stressful and traumatic experience we just went through had the ability to pull us apart, but instead we dug in deeper and worked harder to have a fulfilling relationship.

You can see the joy in these photos and the love that we share for each other. I am grateful for a partner who will follow me around with a camera because it brings me happiness to have great pictures. I am also grateful for a partner who supports me through the hard days in order to celebrate the special ones.

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.

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

January:

February:

March:

April:

May:

June:

July:

August:

September:

October:

November:

December:

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.

Mental illness and steroids.

I have a long history of mental illness, carrying multiple diagnoses including bipolar, eating disorder, OCD, and PTSD. I have had my fair share of experiences with psychiatrist visits and even inpatient mental institutions. I am not ashamed of these facts. But the diagnoses I carry are hefty and cause extreme turmoil in my life.

I have spent many years in therapy, working through past traumas and the altered thinking I sustained because of those events. I had made incredible progress and was off my anti-anxiety medications and only required two mood stabilizers. I felt confident in myself and in my thought processes. I finally felt stable and that I had reached a place of “normalcy.”

Then three months ago my adrenal glands shut down and stopped producing the natural steroids your body makes to keep you functioning. This required me to start an oral steroid regiment twice daily.

It is heavily documented that corticosteroids cause mental health issues to develop or worsen. According to leading research, symptoms of hypomania, mania, depression, and psychosis can occur during corticosteroid therapy, as can cognitive changes, particularly deficits in verbal or declarative memory.

The full list of possible side effects that are related is daunting:

• Difficulty sleeping

• Increased appetite, weight gain

• Nervousness, restlessness

• Anxiety, depression

• Sudden mood swings

• Avoidance of social situations

And I am unlucky enough to be suffering from all of the above. I cry for no reason — just an intense and overwhelming need to cry multiple times a day. I can fluctuate from fine, to irritable and cranky, to completely sad within the hour. I am trying to find joy in my daily life and focus on the moments of happiness and clarity, but then this intense fog comes over me and I am left helpless.

The steady weight increase from steroid use has also been very stressful. I have a history of anorexia and bulimia, and while I have not acted on those urges in a long time, I still have the loud thoughts telling me I am a failure because of the weight. I try and exercise a little or eat healthy, but I am so fatigued and depressed that just getting out of bed is a true feat of strength; therefore working out or cooking meals is too daunting.

What is really upsetting is when I compare myself to where I was just a year ago realize I am broken now. This makes me sad. I’ve exhausted every effort to stop the disruptive thoughts. But the healthy coping strategies I developed over the years do not have the same effects they used to.

I have a terrific support system, including a loving husband and nurturing parents, not to mention a kick-ass psychiatrist/therapist who helps me immensely. BUT I NEED MORE HELP. And that’s where you come in! If you have experience with depression or mania due to corticosteroids and have advice I would love to hear it. Drop a comment on this post or contact me privately through my contact page. I am in need of support, guidance, and advice.

Sex with a chronic illness.

Lots of things change when you have a chronic illness; everyday activities like having sex with your partner may become overwhelming, difficult, or painful. With a chronic illness, sex often involves a complicated mix of feelings, emotions, and practical considerations. For some, the challenge of accepting a diagnosis can reduce sex. For others, sex is difficult because of the lowered self-esteem that comes with being sick. Some may have less energy or desire for sex. Merely the act of can be painful, too. Whatever the reason for the decrease, there can be physiological and psychological turmoil from it. Sex is not just for fun, but an important biological component that can be vital for comfort, pleasure, and intimacy. It is also hugely important in a relationship so when the future of their intimate lives becomes uncertain, both partners can feel that loss.

Things you can do to combat the issues include talking to your doctor regarding pain, erectile dysfunction, and other direct causes of your sexual function. Some medicines diminish sex drive or inhibit sexual function by causing changes in your nervous system. Drugs may also affect blood flow and hormones, which are two important factors in sexual response. Talking to your partner is also very important. Expressing what you need and your desires in a neutral setting often accomplishes a lot. Experts note that using sentences that begin with “I” instead of “you” are more effective – for example, stating “I feel loved and cared for when we have sex” will garner a better response than “you don’t have sex with me anymore.”

Communicating with your partner about what you feel and what you need is important, however, sometimes just talking can’t fix the underlying issues and problems need to be addressed from multiple angles. Before I had my ileostomy surgery me and my husband (Will) talked about how things would change for a time after the procedure. We maturely talked about, and agreed, that sex would be painful and potentially damaging for a while. What I didn’t plan for was that almost a year out from surgery it would still be such a challenge for us. With my adrenal failure and my continued rectal pain, sex can be damaging and has to be avoided regularly.

What’s frustrating is that most of the time I want to have sex. And many times I try to have sex. But Will stops my advances because he is worried it will be hazardous to my health. While he still finds me sexually attractive after my illness, he fears sex will be detrimental and therefore avoids it.

I spoke to him in length about our sex life and he said to me that what’s most frustrating to him is when he has to say no to me and I get disappointed. He pointed out that with my adrenal insufficiency and POTS he is concerned about my heart rate getting too high and causing issues. Of course consent from both parties is important, so I respect when he says no. However, it has led to self-esteem issues. I already feel worthless due to my pain leaving me physically scarred, under-employed, and unable to contribute at home as much. That, mixed with reduced physical intimacy, has led me to feel unattractive and undesirable.

My intention for writing this post is to help you, but also to help me and my husband with our issues. We are still seeking answers ourselves, so if you have any suggestions please comment or message me on the contact page.

In conclusion, there are definite things you can do to improve the situation, so don’t give up! The closeness you feel during lovemaking can help you feel stronger and better able to cope with your chronic pain.

  1. Communicate honestly about the problem.
  2. Reconnect emotionally by spending quality time together.
  3. Try masturbation and oral sex if penetration hurts.
  4. Utilize massages and touch.
  5. Talk to your doctor if problems persist.