Everyone gives the advise to work with your doctor. And don’t forget have them communicate with one another. Except for, it’s not always that easy. Most times, it is not an open conversation with a doctor. They will tell you what they are ordering, you better make an appointment. You can avoid it for a while but if you don’t do a or b they will state you declined medical advise and they are not responsible. Or if you don’t do it they let you go as a patience. I have had so few doctors who sit down with me and openly discuss my illness, treatment, or testing, or daily life.
I am not the typical text book case, actually none of it is black and white. I am a rare case. One may picture that brilliant team of doctors around the sick person discussing how to help them. Sadly, that only happens on television. In real looks more like this: gastro sees patient tells patient tell your cardiologist to do this. *They NEVER speak* Cardiologist ah, doesn’t look normal tell your rehemunatologist to order this test. In the hospital they argue. And in the end all that is accomplished working this way is stressing out the patient.
The healthcare system does not function decently, but rather it is extremely dysfunctional. Advocating for yourself as a patent is not an easy task. Additionally, it is most times just as difficult for a caregiver to advocate. Some don’t think patients know anything and should just follow directions. At times, asking for something that is undoubtedly needed results in someone telling you that you want another problem or someone gets offended that you are telling them what to do. More and more stories surface with the medical community not paying attention and causing devastation.
Once you are established at a medical center switching doctors is not only a hassle but can be dangerous due to not being able to refill medications. Sometimes, it feels like we are taped in the Spoonie world and the medical professionals hold the key to our escape. Without being able to truly work together we as patients suffer greatly.
What types of medical dysfunction have you encountered?
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.
I was feeling good. Really good and beginning to actually function. I was hungry occasionally, tolerating sun, able to accomplish more, losing water weight, less pain, and more energy. I was feeling more confident about my treatment plan and relived that my efforts were paying off. I had visited family to help out with an emergency. Than of course, went back home. The following morning I felt a bit off. I thought I just over did it a little. However, by the following morning it was clear something was wrong once again.
I began out of no where vomiting. To be clear I never vomit with any of my chronic illnesses. I had the runs. Unable to eat and barely able to drink. I ran an extra bag of Saline fluids because it was a Saline day thankfully. I toughed it out all weekend. Finally giving in I went to the Emergency Room only to be “accidentally” sent home. I continued to get worse each day. I began having palpitations, chest pain, all my pain was intolerable by this time, and unable to eat more than two crackers at a time. Due to vomiting I missed all my meds, vitamins, and supplements for about two weeks. On the bright side I’m certain now this plan works.
I have never had to go to the emergency room twice in one week. I was hesitant and frustrated. It was not a smooth trip by any means. In fact, the doctor only agreed to treat me and admit me once my gastros office yelled at her for saying I should just be sent home. I had seen this ER doctor one other time for a mast cell reaction. She didn’t understand it or want to call my doctor so told me I was over reacting. #RareDiseaseStruggle
Finally, I was admitted, as I said. However, no one had much direction on what to do other than offer me food and some encouragement to try to eat. If I had energy it would have been tempting to yell at someone because if all I needed to do was try some food I wouldn’t need to stay in the hospital! They ran basic labs, a stool test, ultra sound, and part of a colonoscopy. They yielded results but nothing that gave them direction for treatment. My body was starving when I was admitted and left. I had half a dozen stones, low blood sugar, a broken cyst, and low vitamin levels. I slept in the beginning about 20 plus hours a day. In perspective I never nap.
This was by far the most frustrating hospital admission I ever had. While waiting for my scope I turned on worship music and just cried from the pain. I had to try to think ahead as most times it took about an hour if I needed anything. When I got to my hospital room I struggled flushing the toilet from being weak.
Finally I could get in a few bites of soup. So they allowed me to go home because no one was sure what else to do.
So why can’t I eat suddenly? Well, I have of course a well thought out theory. I believe I either got food poisoning or a virus. Due to this I was unable to keep my steroids in so I encountered a mild adrenaline crisis. Additionally, mild flare up of UC, EDS, POTS, and Lupus. To top it all off I have my suspicions that some sort of a mild motility disorder is going on as an overlapping illness with the EDS, Mast cell, and POTS trio.
My days currently are spent with my pets as I try to finish my bachelors degree. I attempt to stimulate appetite and eat extremely small meals. So far I am down about 18 pounds. Outside of that it is mainly resting. There’s not much you want to do when always running on empty.
My goal is to get back in all my meds and supplements because they have been life changing for me. No I have not acquired a magic pill but just another tool to add to my tool box. I follow up with my PCP this week and will be discussing the possibility of a UTI. Furthermore, bring up once again the fact that I am in pain when I eat still. I will see someone who works with my gastro and see if we make any progress. At this time, my doctors are against TPN. However, soon I am getting a PICC line Finally placed for my fluids.
I have 100% seen improvement just to be clear but improvement doesn’t mean I never have set backs. Everyone with an illness has ups and downs. I know in my heart this could have been much worse than it was. I will be working on getting out info on the elements of my plan that help me so much. Additionally keep an eye out soon for a transitioning home from the hospital post.
For when I am weak the Lord is my strength. My provider. My everything. Praise Him in every storm. I am beyond thankful for those He has placed in my life as support. He embraces me when things feel like a nightmare and provide comfort. He has chosen not to heal me but to hold me and I will praise His name forevermore
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
I talk a lot about Prednisone on my blog but I never shared an overview of my whole relationship with the medication. It has been a roller coaster like for most people.
Before we dive in let me quickly give you a brief overview. By definition Prednisone is, “ananalogueofcortisone,usedasananti-inflammatory, suppressed the immune system,andinthetreatmentof various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.
I begun my journey with Prednisone in 2013. For the first few years I was off and on low doses of the medication but the time I spent off of it became shorter and shorter. At the time I began the medication there were a lot of undiagnosed illnesses.
During this time I ended up with a sever bladder infection that infected all three (yes you read correctly, all three) of my kidneys and threatened to hit the blood for four long months. Let me just say, after a four month long infection the body is never the same and neither are the illnesses. They did determine with the type of bacteria that the steroids indeed saved me from being in a more life treating position. I manged some how, to stay out of the hospital that entire time! Not sure I could handle a do over of that.
During this time my diagnosis of lupus became more concrete. Things were fine, which is a term I use loosely with a chronic illness, while I was on Prednisione. We took the proper precautions with my bone health and beginning a medication to take its place. Than we began to taper. All was well enough to be out of the hospital until I went to get my Benlysta infusion and was receiving my once a year bone infusion. I had a bad feeling as the Relcast infused. I began feeling a little unwell but the nurse assured me I was just anxious and completely fine. Except for the following morning I work up feeling funny, well, not really funny more like hit by a bus. The pain broke my pain scale. Movement hurt. I soon discovered I couldn’t get up and see straight. I was unable to eat or drink. Eventually I made it to Urgent Care who transported me to the hospital were I was admitted to the cardiac unit. Later on I was informed my liver enzymes were oddly high and over heard I may have POTS.
From that point forward tapering became a nightmare beyond my imagination. The following April I tapered down to 5 mg and a few weeks later landed admitted to the hospital again. This time I broke my liver enzyme record and most likely the record of the hospital my numbers reaching near 900s. I also get told I have UC. This time I could not eat for days. I was in the hospital for ten days. It was brutal.
The following January history repeats except for the fact that I ended up going to the hospital sooner for the pain so my enzymes were lower.
The doctor in charge of the taper shifts over time for various reasons. Each doctor made promises of figuring out how I could safely come off yet each has greatly failed. No one has made an honest attempt to help solve this problem therefore in the end contributing to its growth.
After a flare in March I was told I need to come off as soon as possible or my doctor will not continue caring for me. Such little guidance.
Tapering is overwhelming for a multitude of reasons. A gland shuts off while someone is on Prednisone. It must turn back on so that the person can stay alive but it takes time. The body goes through something like withdraw but it is rooted in the fact that the gland is not on and the body needs it to survive. Tapering off too quickly can be deadly. Sending someone into an adrenaline crisis.
I have been in this taper cycle for five years. Each time I move a half a mg I feel as though I am dying with the intensity of pain. At times, it feels like the muscles are being torn apart and breaking. While the joints are being crushed. There are no accurate words to describe the abdominal pain. The fatigue with the process is hands down unique. Eating becomes a chore.
I began to feel completely hopeless of coming off the medication and figured I would settling for staying on 10 mg or 5 mg if possible. Anything so that I could actually live. I have with a lot of changes, hard work, persistence, and prayer made it lower for longer than I have in years but it is still an extreme struggle. I finally have hope by the grace of God to get off this medication. It is most ‘definitely a struggle daily and it is time to get some extra medical help (which is long over due) but I am making Prednisone progress. One day at a time, one sip at a time by God’s grace I am taking my life back.
I will continue to blog about what is helping me on this journey but if you cannot wait to hear what it is please leave a comment with your e-mail address.
Don’t judge a book by it’s cover that is what we have been told. Yet sometimes even once we have dived in and are reading there is a drastic change we would never expect in our wildest dreams. At times, we believe whole heartily that we trust a person and the individual is extremely different than reality. Perhaps the person put on a front and we never expect them to betray us when we needed them most. Other times something tragic happens and the person we cherished dearly pushes us away.
Most can recall a time something like this has happened out of the blue. Reason or no reason it is devastating and heart wrenching. On one hand we might like to go back to how things were on the other we might hunger for revenge. Emotions race through us consuming us and dictating our actions or attitude.
Healing from a loss of a friendship is not an easy road. Furthermore, it is a road traveled too often by those who have a chronic illness but that fact does not make it easier. Coping in a healthy way as we move forward is vital.
The truth can hurt. To be completely honest the only One who is completely unwavering is the Lord. He cannot betray us. He will never turn His back on His children. Moreover, His love for His children is too great to put into words. Regardless of what we do He is still there.
Those words of reassurance might bring some comfort at times but there may be times those words offer no comfort at all. To be honest that is perfectly okay. It is okay to not be okay and that our hearts have been shattered in this tragedy because that is not how God intended humans to interact. He intended us to live in community, encouraging one another, and challenging each other to grow closer to Him. However, we live in a fallen world with too much sin truthfully.
My heart breaks for you if you can relate to these words. I do not know when nor how but I promise it will be okay. By God’s grace you my sweet friend will overcome the heartbreak. God is close to the broken hearted, the rejected, and uninvited. Run towards your loving Savior who will heal your broken heart.
Do not isolate yourself (though it may be tempted and I understand that). A reminder once more, the Lord created us for community just not everyone uplifts us the way they should. Those in our lives should encourage us to thrive and grow in Christ not be a source of stress.Call that person you can always count on for prayer. During this valley of sorrow practice some self care. You have been though an emotional combat and must recover properly.
Lastly, be certain to pour your heart out to Jesus because He is always listening. Write out your prayers to Him. Rest assured He holds all your tears in a bottle. He understands the heartbreak and devastation. Pick up that devotional you have been meaning to read. Start that Christian book that is under a pile of junk on the counter. Listen to a pod cast or sermon. Take the time to begin studying that book of the Bible you have been meaning to. Join an online Bible study. Do anything to immerse yourself in His Word and His love. Guard your heart. You have victory in Jesus Christ over this.
Jehovah Jireh (God Our Provider),
We surrender to Your compassionate hand the individual who has deeply hurt us. Allow them to be redeemed by Your grace.
Our hearts have been shattered in ways we never imagined. Things will never be the same. Even though it hurts, Lord Jesus, we will praise You. We will always unending sing Your mighty praise. We are confident that You will heal our hearts. Confident that You will provide and deeply bless us beyond our dreams. Fill us up with You, Jesus. Drench us in Your love. Comfort us. May we grow closer to You.Allow this season of sorrow to bring honor and glory some how to Your precious name. We love You.
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/