My Prednisone Journey

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, “an analogue of cortisone,used as an anti-inflammatory, suppressed the immune system, and in the treatment of 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.

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Right before I began steroids. 5’8” and under 100 pounds here.

 

 

 

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.

 

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Mast Cell Activation: An Overview

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. ”

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Triggers

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.

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Some Symptoms

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
  • Fatigue
  • Itching, flushing, hives
  • Episodes of fainting or dizziness
  • Bone pain
  • Brain fog
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart
  • Anaphylaxis

Overlapping Illness

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.

Treatment

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

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Photo by Sharon McCutcheon on Pexels.com

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/
  • Mast Cell Activation Disorder | Diagnosis Discussionhttps://www.youtube.com/watch?v=iYje4mmh5mk

    Living with EDS: Mast Cell Activation Syndrome

    https://www.youtube.com/watch?v=qv40McIWocU

 

 

What are your tips for living with Mast Cell?

*Please note this is a very brief overview of this disease. Many medical professionals are not fully educated. Please subscribe to be notified when the next mast cell post comes out.

Uncertainty in Fibromyalgia and Chronic Illness

Today we have a wonderful and eye opening post from Cassie Creley.

Cassie Creley lives in the Pacific Northwest and loves writing. Dealing with multiple health conditions including cancer, fibromyalgia, Dysautonomia, and asthma have taught her that God’s joy is available even in our worse struggles. She blogs about creativity, faith, and living with chronic illness at http://cassiecreley.com.

 

 

You would expect a diagnosis to bring some certainty to your life. But when the diagnosis you receive is for a chronic illness that is currently incurable, that is not often the case. It took me some time to realize this. At first, I was blindsided by the amount of uncertainty that took up residence in my life due to my health.

 

Being diagnosed with a chronic illness puts us in a constant state of uncertainty. This uncertainty is one of the unexpected and most difficult side effects I’ve been dealing with since being diagnosed with fibromyalgia. Before getting diagnosed, as my health declined, there was always the assumption in the back of my mind that things would get better, I would get well, and life would continue as normal. But the diagnoses have just kept coming in the last two years: thyroid cancer, Dysautonomia, CFIDS, in addition to the asthma and allergies I was diagnosed with early on in life.

 

Unless you’ve experienced fibromyalgia, Dysautonomia, or other chronic illnesses, it’s hard to imagine the daily impact. I find myself wishing someone had warned me, which is just the same as wishing there was no such thing as uncertainty!

 

My body and my mind have become sources of uncertainty. I’m normally a very organized and dependable person. I could be counted on to show up when I said I would, to have a project done by deadline. Now, I often have to cancel last minute because there’s no telling when my body will suddenly decide it’s done for the day. I also used to thrive on having a schedule and routine. My symptoms and lack of energy throw my entire day into chaos, making it nearly impossible to predict when I’ll be able to accomplish even simple tasks.

 

Perhaps most frustrating of all is the uncertainty I now experience when it comes to my mind. I used to easily memorize information, but now struggle to find words or put them in the right order when speaking. When proofreading my writing, I’ll often find that I’ve inexplicably typed the wrong word. This is all part of the infamous brain fog of fibromyalgia. It makes me uncomfortable when talking with even close friends, let alone people I don’t know well, and impacts my confidence as a writer and my self esteem in general.

 

In spite of all this (and maybe partially because of it) I’m a huge believer in silver linings. What, you might ask, could possibly be a silver lining to so much uncertainty?

 

Maybe, if we can harness our uncertainty, we can let it force us to realize that uncertainty is a natural part of life.

 

The world teaches us that we should have every step of our lives planned out. And part of me really likes that. I want to know all the details. I want to be prepared. But is this healthy?

 

This expectation starts young. I didn’t realize just how profound an impact it has until I was a high school leader at my church for a few years. Students were expected to know where they wanted to go to college and what career path they would follow well before they graduated. I could see how much pressure and stress this put on the students. And the expectations continue throughout life—people expect you to know who you’ll marry, how many kids you’ll have, what you’ll do every 5 years of your life, when you’ll retire, etc., etc. If you don’t have everything planned, people seem to think there is something wrong with you.

 

Huh. Kind of makes you realized that certainty, or at least the illusion of certainty, can be exhausting too. Probably because pretending we’re in control of everything isn’t the way God designed us to live. In fact, the book of James has some pretty harsh words about acting like we know everything:

 

“Now listen, you who say, ‘Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.’ Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. Instead, you ought to say, ‘If it is the Lord’s will, we will live and do this or that.’ As it is, you boast in your arrogant schemes. All such boasting is evil.” (James 4:13-16 NIV)

 

Pride creeps in (aka boasting) when we become focused on our will and our need to control every aspect of our lives. Instead, we’re called to recognize our dependence on God’s will and surrender our uncertainty to His sovereign will and trustworthy love.

 

Maybe our unique understanding of uncertainty, brought about by chronic illness, will allow us to extend grace to others because we won’t expect people to have everything figured out.

 

Maybe we can extend that same grace to ourselves. Wouldn’t that be a relief? To know we’re not expected to have everything together at all times?

 

I’m realizing that uncertainty is part of being human. If we take the time to recognize the normalcy of uncertainty, we can also recognize that our faith makes uncertainty okay.

 

We don’t have to be uncertain about God. We’re assured in the Bible of His unchanging nature. (Hebrews 13:8) We’re assured of his presence. (Matthew 28:20) We’re assured of his unchanging love: “Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.” (Psalm 143:8 NIV)

 

The uncertainty of chronic illness starts to look smaller the more we focus on God’s certainty. I’m not saying it’s easy. But it’s possible. Some days will be harder than others. But the flip side of knowing some days will be harder is that we can rest assured that some days will be easier.

 

Once we stop running from uncertainty, we can embrace the fact that there is a positive side of not knowing everything. I’m reminded of a quote by Luci Swindoll, one of my favorites that I recently rediscovered: “Lord…may I relish the joy of knowing you are full of wonderful surprises.” Even in the midst of chronic illness or whatever life throws our way, let us never forget that God can certainly bring about beautiful things that are more than we ask or imagine.

 

Even in the midst of life’s uncertainty, let us never forget that God can certainly

bring about beautiful things!

The Ultimate Treat Guide

I hope you and your pup friend are having a bark-tastic day! I have written a treat guide that I am super excited to share with you. Abby and I share our top treats in this post. My hope is that if you have a sensitive or picky pup this will give you some new ideas.

Shopping

I learned quickly that most supermarkets where I live carry very few gluten-free dog treats. Therefore, even though I was skeptical, I began researching treats online. I eventually ended up on Chewy. I would highly recommend shopping here because the prices are the best I have seen. Additionally, they ship fast. The longest I had waited for a package from them was three days and I never pay extra to get it here quicker.

A Healthy Balance 

Research has shown that about 54% of dogs are overweight or obese. Yes, dogs enjoy eating. However, their humans are responsible for feeding them properly.  Dogs do not spell love F-O-O-D. On the contrary, they spell it T-I-M-E. The number one reason our pets are overweight is we overfeed them by about 20%.

Those “extras” are another reason dogs are putting on weight. Table scraps is a bad habit to be in for many reasons. High caution should be used and lots of research to know what is digestible for your dog. For example, grapes are dealy but carrots are good for dogs. Too many large cookies, jerky, or biscuit treats contribute to the problem. Lastly, an audience of bones puts on weight.

Of course, the breed of dog effects their weight. Similar to humans, even those who are more prone to being overweight should take preventive measures.

I calculate an estimate of the calories that Abby takes in daily. I schedule ahead of time when she will get a bigger treat such as a bone. When using a bigger treat I will decrease her kibble intake for the day.

Things to consider when buying treats

First, I consider ingredients. I prefer a treat that includes a fruit or veggie. I also consider chemicals added. I go towards low calorie treats that I can break easily. I do this so that we can use them in training. Lastly, the price must be considered. I would say I get two bags once every month or every other month. I recommend also thinking of why you are giving your dog the treat, for example, for training or to relieve stress.

Fruitables Skinny Minis Soft & Chewy 

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I love the size of these cookies. Moreover, they are easy for me to break. I love that the main ingredient in this cookie are fruits. They smell like people food. Rich in natural antioxidants, vitamins, and dietary fiber. Low-calorie treat is great for training and as a guilt-free reward for your dog. No wheat, corn, soy or artificial flavors or colors.

Zuke’s Mini Naturals

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Again, I love the size. I break these treats as well. These are best kept in the package not put in the cookie jar so that they stay soft enough to break. Seasonings and whole foods help maintain a healthy lifestyle. Less than 3.5 calories per treat. Great for training.

Vita Essentials 

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The biggest downside to these treats would be the price. I don’t love them. They are nearly impossible to break. I love that these treats are raw. The calories are a bit higher than the cookie options I talked about above. They are super smelly which can be good when playing find it with treats outdoors. These can be used as high reward treats.

 

Chewing

Dogs enjoy chewing. They chew to relieve stress, boredom, to keep their jaw in shape, and to clean their teeth. This is why we offer them bones or chew toys.

Z-Bones

Fight bad breath with these natural, wholesome bones made from a blend of fruits and veggies. Assists in removing plaque and tartar.

Bully Sticks

Bully sticks are a healthy long last chew treat. They can be a little pricey.  This is a fantastic alternative to Rawhide which can be dangerous for dogs. Only made from high-protein beef muscle, bully sticks are ideal for your dog. Beef is a complete source of amino acids, which support your dog’s muscles, brain, skin, and coat. This treat is the highest calorie treat that Abby eats. They do have a unique smell but it is not awful in my option.

 

Elk Antler 

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Abby has an Elk Antler on hand that she usually chews in the morning or evening. She has had the same one for at least three months. Antlers are high in healthy minerals such as iron, calcium, magnesium, potassium, zinc, and phosphorus. The majority of antlers will last a dog months. No smell. I advise researching what brand to get. The first one I had purchased for her she had no interest in.

Himalayan Dog Chew

This is an alternative to the Elk Antler. Again, you can expect this treat to last for a minimum of one month. All natural ingredients: yak and cow milk, salt and lime juice. At the end, when the treat looks too small, you pop it in the microwave for another treat. It becomes a cheese puff texture treat which is devoured quickly. 

Non-Food Chews 

Abbys favorite chew toy is the Nylabone. Nylabones are zero calories. There are a wide variety of textures and flavors to keep your pup engaged. It is essential to note the weight on the packaging. If you purchase one that is less than your dog’s weight you can expect it to break easily.

 

Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

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Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

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Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

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Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.