I have struggled greatly with pain for many years. It began as a child but was not as intense. I remember hearing people complain that they were in pain and it was just part of ageing so I figured it was a part of growing up. Little did I know it was abnormal. Searching for answers was no easy task. I am diagnosed with Systemic Lupus Erythematosus, Ulcerative Colitis, Hyperadrenergic Postural tachycardia syndrome, Ehlers–Danlos syndrome, Endometriosis, Mast Cell Activation, and Hereditary Haemorrhagic Telangiectasia . In addition I have chronic kidney stones, currently battling abdominal pain, frequent cyst, frequent infections, and an extra kidney.
With the opioid endemic it is nearly impossible for most to begin an opioid for pain. Personally, I am allergic to the “alternative” medications such as Cymbal,Amitriptyline, and Neutron.
I can understand to a degree the opidoid endemic. But the other part of me does not get it. People should just accept the pain to some doctors. Furthermore, those who do drugs will always find a way to obtain them.
I have had to be creative in my pain management. Pain can be dictating causing one to quit their job or miss evens. Weakness is common due to lack of movement/exercise. Moreover, pain causes mood disturbance such as anxiety and depression. Many chronic pain warriors struggle with painsomina which is insomnia due to extreme pain. It is all a vicious cycle. It also effects ones memory also known as brain fog.
Most times doing absolutely nothing is not an option. I have a lot of outside of the box pain tips and I will be starting a YouTube channel. I will be making a pain management video with all my tips. If requested I will also do a blog post on it.
In my personal option rare diseases do not get enough attention so anytime I have the spoons and time I am delighted to blog about any of them. Many doctors are not educated enough about them. Education for us all makes a huge difference.
Gastroparesis is considered a very rare disease but some argue that doctors are just not educated enough to diagnosis it. It can overlap with the trio overlapping illnesses including Ehlers-Danlos syndromes, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. For anyone who has taken note of the fact that I have the trio I do not know for a fact if I have it and do not think my doctor would identify it. Furthermore, it is too difficult to tell on steroids and I’m allergic to part of the test.
According to the found Gastroparesis is a GI track mobility disorder. In further detail they explain:
“Normally, the stomach empties its contents in a controlled manner into the small intestines. In gastroparesis, the muscle contractions (motility) that move food along the digestive tract do not work properly and the stomach empties too slowly.
Gastroparesis is characterized by the presence of certain long-term symptoms together with delayed stomach emptying in the absence of any observable obstruction or blockage. The delayed stomach emptying is confirmed by a test.”
Symptoms vary from person to person.
A feeling of fullness after eating just a few bites
Vomiting undigested food eaten a few hours earlier
Changes in blood sugar levels
Lack of appetite
Weight loss and malnutrition
I recently saw a story that is a ray of hope in a cloudy sky of chronic illness and would love to share with you to encourage you.
In 2009 I was diagnosed with severe Gastroparesis and another auto immune disease. Gastroparesis is damage to the vagus nerve which doesn’t allow your stomach to empty its food contents properly. So your food can literally sit in your stomach for days instead of hours. It’s pretty miserable. Worse, the few effective medications available to help ease the symptoms were not an option for me due to an allergic reaction to them. In severe cases like mine there is the option to get a pacemaker installed in your stomach, but as I already have a pacemaker/defibrillator I was once again left with no solution to help me. Most recently, I was rushed to the ER because of hypoxia (low oxygen) that saw me admitted to the ICU for three days. I was told that all of my medications, heart related included, had built to life threatening toxicity due to the blockage directly caused by my Gastroparesis. I was in the hospital for another 5 days and taken off all my medications to detox my entire system. I used that “blank slate” to try a vitamin system (I know it sounds crazy, right?!) which helped greatly with both my chronic and fibro pain. I’ve found through all this that doctors prescribe medication often, because they have no other solution. We don’t think about the life we lose because of the medications prescribed to us or the life the side effects take from us because we think that it’s helping us. For me, the medications that were supposed to help me almost took my life. I needed a balance like most of us of medications and natural elements.
If you would like more info on what this lovely lady did to improve her health please comment your e-mail. (I ask people to do this so that I can respect their privacy and provide ALL the information I have on hand possible pertaining to their illness. If you have an illness I have I have additional tips I would love to share with you).
Need more info on Gastroparesis check out this video
Tightening in the throat that increases by the second. The grip, like no other. Strangling. Less air pushes through. Constricting more. Will the airways close. Focus on breathing. On finding the —A wave of dizziness emerges as less air pretenses it’s self… Focus on finding the medication.
Near anaphylaxis. It has become a common occurrence although it has not yet become normal to work though. Mast Cell Activation Syndrome is one of a few new diagnosis I recently acquired.
I had hear of the disease in passing, but it was the furthest thing from my mind. When my POTS doctor asked if I had a lot of allergies I replied no thinking everyone has a list of allergies. My theory was everyone has allergies they are just unaware, which of course, is not true. Eventually, I made my way to an allergist and got conformation of my diagnosis. Mast Cell Activation Syndrome.
Defining Mast Cell Briefly
Mast cell are a vital part to our blood as they assist in the function of the immune system. They are found in many locations throughout the body. “Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. ”
For someone with mast cell there are various triggers. Basically, anything at a given moment can trigger us. Many times I have been okay with a food or cream for months or year than react to it. Some triggers include Heat, cold or sudden temperature changes, Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.), exercise, fatigue, food or beverages, including alcohol, medications, natural odors, chemical odors, perfumes and scents venom infections (viral, bacterial or fungal), and Sun. Additionally someone with mast cell can have a reaction to themselves which is the strangest concept in my option or idiopathic reactions.
Symptoms are unique for everyone. They can be altered depending on the day or the trigger. There are many symptoms with Mast Cell.
An overview of some of the many symptoms:
Gastrointestinal symptoms such as nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption
Low blood pressure
Itching, flushing, hives
Episodes of fainting or dizziness
Rapid weight gain or loss
Chest pain and/or a racing heart
Most individuals have an overlapping illness or a few. It is common to have POTS (or Hyper POTS) and Ehlers–Danlos syndrome. Additionally, some of these individuals have an autoimmune disease.
Treating mast cell of course comes with challenges. The biggest challenge is that many people have a lot of medication allergies. One of the goals is to calm down the mast cells. Additionally there needs to be a plan when one reacts. Some people have continuous symptoms such as pain. Than they also deal with a massive amount of sever symptoms when encountering a trigger. Due to this there are various elements of the treatment plan. Almost all people start on two over the counter medications Zyrtec and Xanax. These medications should calm cells. Moreover, other over the counter and/ or prescriptions are used to treat it.
Getting Educated and Finding Support
Like previously mentioned there are times we encounter a trigger which can result in some symptoms like itching or nausea to life threading symptoms such as Anaplhyaxis. Again treatments vary. Some use benadryl or an Epi Pen or both.
If you or a loved one have mast cell or suspected mast cell please educate yourself as much as possible because it can (and most likely will) save your life. Be sure to connect with others with this illness. Personally, I am a huge fan of Facebook support groups and there are some fabulous ones for Mast Cell. My favorite Mast Cell Facebook Support Group can be found here Mast Cell Activation Syndrome Support (MCAS only). This group has the best resources I have found to date. It also makes it easy to get educated and find support.
Need some extra information? Check out these wonderful resources:
Mast Cell Research: http://mastcellresearch.com/
The Mastocytosis Society https://tmsforacure.org/
Mast Cell Activation Syndrome: The Immune System Gone Wrong https://www.drlam.com/blog/mast-cell-activation-syndrome-the-immune-system-gone-wrong/32795/
It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.
You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope. You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.
It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.
Baking is an enjoyable part of the Holiday season. I have been extremely spoiled, every season there is something homemade my mom makes for us from applesauce to pies to cookies to candy. I always enjoyed assisting her in baking, especially during the Christmas season. It has been difficult for me to bake on my own because of POTS and a lack of energy. I am going to share some cookie recipes with you. Some are spoonie friendly, others just taste good and are worth sharing.
Low Spoon Peanut Butter Cookie Recipe:
1 cup of peanut butter
1 cup of white sugar
Preheat oven to 350
Combine ingredients. Bake for about eight minutes
Philly Cream Cheese Cookies
I simply love these cookies. They are different than the norm but festive and delicious.
1 (8 ounce) package of Philadelphia cream cheese, softened
3/4 cup of softened butter
1 cup of powdered sugar
2 1/4 cups all-purpose flour
1/2 teaspoon baking soda
1/4 teaspoon mint extract
Combine ingredients. Allow dough to chill for 30 minutes. Preheat oven to 325. Bake 10-12 minutes. Makes about three dozen cookies.
More of a classic type cookie. I love simple cookie recipes. They can allow those with chronic illness who are sensitive to take part in the cookies. I am not gluten-free but have a lot of abdominal issues and this cookie always sits well.
Preheat oven: 350
1 cup of butter
1 1/2 cups of all-purpose flour
1/2 cup confectioners’ sugar
1/4 teaspoon vanilla extract
1/2 cup of cornstarch
Being on your feet for too long is draining. I recommend sitting while making cookies. Using an electric mixer can help conserve energy as well. Take breaks in between, if needed. Rember there is nothing wrong with getting help baking or having someone bake for you 🙂
4 to 5 cups sifted all-purpose flour, plus more for flouring
Nonstick cooking spray, for the baking sheets and rolling pin
Preheat the oven to 375 degrees F.
For the cookies: In the bowl of an electric mixer, cream the shortening and granulated sugar together until light and fluffy. Add the molasses, vinegar, and egg and beat on high speed to blend thoroughly.
Sift together the ginger, baking soda, cinnamon, cloves, salt and 4 cups of the flour in a separate bowl. Add the dry ingredients to the creamed shortening and sugar and mix to make a firm, manageable dough, adding more flour if needed. Wrap the dough in plastic and refrigerate until firm, about 3 hours.
Then the super fun part! Cut cookies into tons of fun Christmas shapes using cookie cutters. Bake for 5 to 6 minutes.
What are your spoonie baking tips? What is your favorite Christmas Cookie recipe?
Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.
You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.
I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.
I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.
Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way. I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.
The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times. Angry with the people who brush us off.
It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.
Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.
Regardless of how close you were let yourself cry if you need to. Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.
Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device.
I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all.
Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.
Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us.
Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid.
Too often we hear phrases like:
But you don’t look sick
You need to be more positive
Have you tried…
You’re too young to be sick
It must be nice not having to go to work/school
You’re just having a bad day
You need to get more exercise
It’s all in your head
Maybe if you got out more
These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright
Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤