Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Monday, August 2, 2021

But If Not...: Praising God Through the Pain

At the beginning of July, Hubby and I packed up the whole family and we went for our fourth year to Camp Chetek's family camp. 

The week started off HOT and humid with temperatures reaching almost 95 degrees Fahrenheit on Monday. If you've been around here long enough, you probably know that heat and I don't mix. At all. Anything higher than about 70, and I'm headed straight for heat exhaustion. Generally speaking, if I get overheated, it takes me at least a week or two to recover depending on how bad it was. 

But If Not...: Praising God Through the Pain

This time, I didn't have a chance to recover and gain any spoons back. I had to jump straight into a week of family camp.

On Monday afternoon, I was in a pretty awful mood. I was grouchy because I felt absolutely horrible, and I knew that the rest of the week would be more of the same. I had been hoping to do at least a few activities with the kids, but knew that it wasn't going to happen (we did do the escape room on Wednesday though and that was fun!). I felt like I was letting my family down by not being able to do things with them, and I was not too happy that my body was once again letting me down by being a total jerk.


That night was our first chapel service of the week. The speaker for the week was Ben Everson (whose preaching and music I highly recommend!) and his sermon on Monday evening was on chapter three of Daniel. In case you don't remember what happens in that chapter or you don't have a Bible nearby, it's the account of Shadrach, Meshach, and Abednego when they refused to bow down to the golden statue that King Nebuchadnezzer had set up. The king had commanded that everyone bow down to the statue and if they didn't, they would be thrown into a fiery furnace. Shadrach, Meshach, and Abednego's response to that command is found in verses 16-18.

Shadrach, Meshach, and Abed-Nego answered and said to the king, “O Nebuchadnezzar, we have no need to answer you in this matter. If that is the case, our God whom we serve is able to deliver us from the burning fiery furnace, and He will deliver us from your hand, O king. But if not, let it be known to you, O king, that we do not serve your gods, nor will we worship the gold image which you have set up.”

To sum up, they told the king that they would not bow down to the statue and that God would be able to save them from the fire. But the first three words of verse 18 are where it gets real. 

"But if not..."

Even if God didn't choose to save them from the fiery furnace, they would still serve Him.  

My troubles looked a little less daunting at that point. 

That night, I decided that if God allowed me to have health issues that week, I would still serve Him. Period. I would not allow those issues to ruin a week spent with my family learning more about Jesus.


Guess what happened next?!?

My health continued to tank all week. 

By Wednesday, all of the walking, the heat from Monday, the sudden plunge into cold temperatures (90s on Monday and by Wednesday, it was in the 60s), and everything else was really taking its toll on me. My vision was wonky and made me feel like I was walking around cross-eyed, my joints were in excruciating pain from giving out on me and subluxing, my muscles were spasming almost constantly, my fatigue was so severe that I could barely put one foot in front of the other and it didn't help that my foot drop had kicked into overdrive making me trip frequently, my autonomic system had taken a vacation and all of my signals (am I hot or cold? hungry or full? etc.) were mixed up. It will be weeks before I get back to my baseline.


But it was still a fun, encouraging week, and the only reason was because I chose to focus on God instead of my problems. I asked Him to heal my pain and fatigue so I could spend some time actually doing things with my family, but He didn't. 

"But if not..."

Some people would probably take this opportunity to ask why God wouldn't heal me if He truly loved me. I covered that in this post, but to sum it up, I learned a lot more and grew as a believer more last week at family camp than I would have if my health had been great. My circumstances do not dictate my relationship with God. 

-----------------------------------------------------------------------------------------------------
"But If Not..." Praising God through the pain : https://bit.ly/3ykNyQt

-----------------------------------------------------------------------------------------------------

Has there been a time in your life when you chose to continue to serve God through a trial? I'd love to hear your story!

















Tuesday, June 1, 2021

Essential Tools for Moms with Brain Fog

 This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!


If you have a chronic illness, you probably experience brain fog at least some of the time. 

Confession: I wrote that first sentence and then stared at it blankly for 20 minutes. Brain fog, anyone?

Anyway...like I was saying, brain fog is real and it can make life pretty difficult sometimes. Add in a few kids (hello mom brain!) and it gets really interesting. The struggle is real.

Essential Tools for Moms with Brain Fog

I use a lot of tools to help me manage my brain fog. My smartphone is the biggest one and what I refer to as my "external brain." I also work hard to stay organized with my home and schedule, stick to routines so I don't miss anything, and break down big tasks into smaller, more manageable ones.  

I'm going to share some tips, tricks, and tools for brain fog with you in the hopes that they'll help you as well. 


I used to carry a paper planner with me at all times to keep track of my calendar, but I needed to lighten up my purse to cut down on shoulder strain so I reluctantly made the switch to using a Google calendar. It turns out that I love it! I especially love that I can sync it with my husband and share it with my sister.
__________________________________________________ 
This one's a little less high-tech, but still very useful. I use them to leave reminders for myself around the house, notes for my kids, and I even write Bible verses on them so I can see them throughout my day. You can even get sticky notes pre-printed with Bible verses here
__________________________________________________


Phone alarm clock
Thanks to distance learning with four kids who all have virtual classes, I currently have 17 alarms set to go off of my phone throughout the school day. Thankfully, that's not the norm for me, but I do use my phone alarm on a regular basis to help me remember things such as appointments, picking kids up from activities, and just about anything else.
__________________________________________________
If you're like me, you're constantly looking for your phone, your keys, your purse, your mind, etc. Tile can't help you when you're losing your mind, but it's great for the other stuff! 
__________________________________________________


I don't write by hand as much anymore because it hurts my fingers and hands, but I'm still pretty obsessed with notebooks and always have at least one going at all times. I use it for my devotions, to write lists and reminders down, to plan things, etc. When I discovered smart notebooks, it blew my mind! Write in the notebook with a Pilot FriXion erasable pen, scan it and upload to your favorite cloud service, erase, and start again. I love that what I write can become digital so I can save and easily find it again. Plus, it's endlessly reusable!
__________________________________________________


Flaredown App
This app helps you track your symptoms and is available for Androids and iPhones. This can make a huge difference in managing your health and being able to show your doctors exactly what's going on with you. 
__________________________________________________


Medisafe App
Do you ever forget to take your medicine or is that just me? If that's something you struggle with too, this app can help remind you to take your medication and can even be synced with others so someone else can check in on you or so you can make sure your child or other loved one is taking their medicine. Oh, and did I mention that it's free??
__________________________________________________


I've used this app for about 10 years now and LOVE it. It helps me keep my house from reaching disaster levels by giving me a list of simple chores to do each day. They can be customized and even assigned to others in your house. 
__________________________________________________

I haven't personally used this app, but I've heard rave reviews about it from lots of other moms so I thought I better include it in the list. Cozi is a family organizer that keeps your whole family on track and in communication with each other. 
__________________________________________________

If you prefer to go old school, this book covers a lot of ground and can make tracking your symptoms and other aspects of your care easy to do and share.
__________________________________________________

Need some tips for how to clean your house while minimizing your pain and fatigue? This book covers it all and is a must-read.
__________________________________________________

This last one isn't really a tool, but it's a blog post about getting organized from Chronic Illness Warrior Life that I found to be very helpful. Check it out! 

What tools do you use to cope with brain fog?







Monday, January 18, 2021

My Story of Being High-Risk with COVID-19

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

It finally happened. 

After 10 months of caution and feeling like it was hanging over my head the entire time, I came down with COVID-19.

My Story of Being High-Risk with COVID-19

I have severe asthma that has nearly killed me many times. I also have Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. Generally speaking, I pick up just about every germ that I come across, and I get pretty sick. A common cold can put me on prednisone with serious breathing difficulties. In 2018 and 2019, I came down with Influenza A and was very sick for weeks each time. My lungs have never fully recovered from the bout in 2018. When I do finally start to recover from an illness, it takes a LONG time for me to get back to my baseline which, isn't very impressive to begin with thanks to my chronic illnesses. 

Before I go any farther, here's a brief description of the conditions I mentioned above:

Ehlers Danlos Syndrome (EDS): A connective tissue disorder that can cause hypermobility of the joints (what some people refer to incorrectly as "double jointed"), stretchy, fragile skin, gastrointestinal issues, and MUCH more. Connective tissue is the glue that holds a person's body together and when that is faulty, the body literally is falling apart from the inside. People with EDS often have the "trifecta" of EDS, POTS, and MCAS.

Postural Orthostatic Tachycardia Syndrome (POTS): POTS is a form of Dysautonomia which is a condition where the automatic functions of the body such as heart rate, blood pressure, temperature, digestion, etc. are essentially "out of whack" and don't operate properly.

Mast Cell Activation Syndrome (MCAS): Mast cells are what cause allergic reactions. For most people, they behave normally, but for people with MCAS, they're out of control, reacting to everything and nothing and causing repeated mild to severe anaphylaxis symptoms. When most people hear anaphylaxis, they picture someone with their throat closing up, but anaphylaxis can cause rapid pulse, low blood pressure, itching, hives, flushing, swelling, wheezing, difficulty breathing, abdominal cramping, diarrhea, and nausea. When I'm not on my treatment plan, I experience mild anaphylaxis symptoms multiple times a day, often with no known trigger, and more severe anaphylaxis several times a year. 

In addition to my asthma being a concern, my MCAS and POTS also made me think that I should really avoid catching COVID-19. Many patients who recover from COVID-19 end up with POTS-like symptoms for weeks or months after. Also, complications in COVID-19 are often attributed to the patient crashing due to a cytokine storm which involves an overreaction of mast cells (remember what I said about MCAS?). In fact, several of the medications and supplements I take regularly to help control my MCAS have been recommended for people with COVID-19.

So how did COVID-19 go for me? Overall, I would say surprising. I had heard that people with the virus have horrible coughs, sore throats, and high fevers. I had an extremely mild cough, a mild sore throat for one day, and only ran a fever twice that never got above 101 F. I did experience severe fatigue, body aches, a stuffy nose, and moderate breathing difficulties throughout the whole illness. I also intermittently experienced chills. 

On December 16th, I found out that someone I had been in contact with had tested positive for COVID-19. The next day, I started to feel sick and so the day after that, I went in to be tested. The next day (December 19), the results came back positive. I immediately quarantined myself in my room away from my family. On day four of being sick (December 20), my husband began to not feel well either. On day five (December 21), I lost my sense of taste and smell although it slowly came back 4-5 days later. My husband went in to get tested that day and the next day, his test came back positive as well and so he joined me in quarantine. Our kids are 12, 10, 8, and 6 and thankfully, were able to take care of themselves pretty well. They weren't allowed in my room and if Hubby or I left the room for any reason, we made sure that they didn't come near us. We were also very blessed that our family and friends dropped off meals for us so the kids didn't have to live on scrambled eggs, sandwiches, and macaroni and cheese the whole time. 

Hubby's fever mostly stayed above 100 for the first nine days of his illness, but thankfully let up after that. He never got as sick as me (of course. He's such a show-off) despite having a fever while I usually had none and was able to go back to work once his quarantine was up on January 1st. On December 25th, I spiked a fever during the night and felt very ill, but I think it was my body rallying and fighting the virus off as the next day, I finally started to feel like I was moving into the recovery stage after 9 days of severe body aches, fatigue so severe I could barely walk to the bathroom, a very stuffy nose, and headaches. My quarantine ended on December 27th, but I was still very weak and fatigued so I stayed in bed the rest of that week to let my body recover. Thankfully, none of the kids ever showed symptoms of being sick and after their quarantine ended on January 9th, they were able to go back to school.

Today is January 18, over a month after coming down with COVID-19, and I'm still not back to my baseline. I get fatigued very easily and my asthma is not under control as well as it normally is, but overall I'm happy with how I've recovered and the lack of complications while I was sick. Obviously, I know that not everyone's story of COVID-19 will be as good as mine. I have a number of friends and family who have also had it and several had life-threatening complications, but thankfully survived. 

Have you or someone you know had COVID-19? How did it go?





Saturday, December 5, 2020

Holiday Gift Guide - Ehlers Danlos/Rare Disease Zebra Edition

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

If you're looking for the perfect gift for the Ehlers Danlos Syndrome or rare disease zebra in your life (or maybe for yourself), look no further! I've put together a list of gift ideas with something for every budget. Enjoy!




__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________


__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________



__________________________________________________


__________________________________________________

-----------------------------------------------------------------------------------------------------
Holiday Gift Guide - Ehlers Danlos/Rare Disease Zebra Edition : https://bit.ly/2JtX7IL
-----------------------------------------------------------------------------------------------------

Did you find anything you liked, either for a gift or for yourself? Drop a comment and let me know what your favorite item from the list is!











Monday, August 17, 2020

10+ Books for Kids of Chronically Ill Moms

This post contains referral links which means that if you purchase from one of my links, I will receive a small percentage of the sale.  Don't worry, this won't cost you any extra!

Having a parent with a chronic illness can be tough for kids. It can make them more resilient, empathetic, and independent, but it can also make them feel guilty, frustrated, and alone. Some ways to help kids deal with these feelings is to talk with them, answer their questions, and make sure they understand as much as is developmentally appropriate. For older kids, giving them a journal to write in can help. Reading books together about what they're dealing with can help as well.    


With that in mind, I've put together a list of children's books that you can read with your child to help them better understand your chronic illness and limitations.  


by Melissa Swanson
"All the kids in class made paper dolls to show someone they love who is hurt or sick. When it's Ravyn's turn to share, she shows a paper doll of her mom — and it looks like there is nothing wrong!
Ravyn teaches the class that even though her mom looks healthy, she’s not! Ravyn’s mom suffers from fibromyalgia and its evil sidekicks. Ravyn's Doll is a simple and effective way to explain fibromyalgia to your child. In a way that is understandable to children. it shows that not all illnesses are visible and explains how living with an invisible illness affects families' daily lives."

------------------------------------------------------------------------------------------

by Ferne Sherkin-Langer
"A distressed little girl expresses her feelings when her mother goes to the hospital. Time drags and the child thinks of her constantly. Her understanding father helps her to cross off the days until she can visit and takes her to the hospital. When her mother comes home, normal life happily resumes. The nature of the woman's illness is not specified, but she is hospitalized periodically, which would make the book appropriate for children whose parents require chemotherapy, for example, as well as being generally useful for any parental hospital stay."

------------------------------------------------------------------------------------------

by Nathalie Slosse
"This beautifully illustrated storybook describes the anger and emotion that many children encounter when a close relative or friend is diagnosed with a long-term illness, such as cancer. The story of Big Tree depicts how things are often out of your control and sets out effective strategies for dealing with these emotions."

------------------------------------------------------------------------------------------

by Josie Leon
"When Mommy is having health issues, finding a way to discuss it with a young toddler can be challenging. Mommy’s Going to the Hospital offers parents a way to start a discussion using clear language and illustrations that can help you and your family make a plan for the situations and emotions that may arise as Mommy journeys from diagnosis, through the healing process, and back to full health."

------------------------------------------------------------------------------------------

by Annette Rivlin-Gutman
"Mommy Has to Stay in Bed is for young children who are faced with the trauma of having a parent on bed rest. In this rhythmic and sensitive story, mother and daughter find ways to cope with feelings of frustration and boredom. Whether the parent is pregnant, has the flu, or is on long-term bed rest, Mommy Has to Stay in Bed brings the brighter side of spending time together in spite of a challenging situation."

------------------------------------------------------------------------------------------

by Risa Kirschner
"Abby's mom has a boo boo, so her Nana takes her to the hospital to visit. Follow Abby's adventures as she finds a magical bed that moves, takes her teddy on a wheelchair ride, and learns that spending time with her mom can make a hospital feel like home. Based on the real experiences of the author's then two-year-old daughter, this sweet story teaches that hospitals are safe places for healing and that parents always love their children, even if they have to spend time away from home."

------------------------------------------------------------------------------------------

by Katie Carone
"Mommy used to do a lot of fun things with me, but now she can't. Now it's my turn to help mommy! It can be sad and confusing for both kids and moms when a mother is hurt or sick and can't do all the things she used to. This simple and sweet book helps children understand limitations. It shares ideas on how kids can help, as well as activities a mom and child can can still do together. It reminds children that they are loved, and the best thing they can do is show love in return."

------------------------------------------------------------------------------------------
by Elizabeth M. Christy
"This is a delightful story told by a young boy learning to understand and cope with his mother's illness. The story creates natural opportunities for families to talk about both the symptoms of chronic illness, and how they affect family life. Even more importantly, the story puts power into the hands of the children. It also offers a helpful "Tips and Resources" section for parents!"

------------------------------------------------------------------------------------------

by Melinda Malott
"A mom uses a brilliant jar-and-marble analogy to teach her son about her limitations related to chronic fatigue syndrome (CFS) and fibromyalgia. The book uses marbles, a toy all children are familiar with, as a measure of the mothers limited energy. Using a jar and some marbles, the author conveys difficult concepts in terms that children can understand."

------------------------------------------------------------------------------------------

by Simone Colwill
"How do you support a child with a sick relative? How do you empower them (and their family) to help too? You’ll find the answer to these questions and more in “What Does Super Jonny Do When Mom Gets Sick?" Jonny is a little superhero with a BIG problem! His Mom is sick. How can he help? JOIN Jonny and Bear, as they go to the hospital to investigate."
Also see the versions of this book written for Crohn's Disease and Heart Disease.

------------------------------------------------------------------------------------------

by Angie McPherson
"Morgan's mom has multiple sclerosis or MS, for short. Sometimes she worries about her mom's illness. But she's found out over time, it might not be as scary as she thought. Join Morgan as she talks about what her family life is like living with a chronically ill parent. There is a resource guide at the back of the book if more information is needed on MS and family life."

------------------------------------------------------------------------------------------

by Rachel Smith
"An interactive journal for kids with chronically ill moms. The spoon theory explained, coloring pages, random silly facts, pages for mom and child to do together, and more!"

------------------------------------------------------------------------------------------

by Kathleen Long Bostrom
"A beautiful book telling the story of Pete, a boy whose dad used to run and swing him around, but now can hardly walk, much less play. Pete is hurt and angry and doesn't understand why this has happened. Pete's dad tells him that even though he can no longer run, he can still be Pete's father. The book includes two pages of suggestions for parents and others helping a child through loss of this kind."

----------------------------------------------------------------------------------------------------
10+ Books for kids of Chronically Ill Moms: https://bit.ly/2Ft2qpb
-----------------------------------------------------------------------------------------------------

If you know of any other books, I'd love for you to share them in the comments!