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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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!

Introducing my invisible companion – pain

A sweet member of Chronically Hopeful, Angela, is sharing a beautiful post with us today. Thank you from the bottom of my heart for taking the time and spoons to be here with us today.

Bio from Angela,

I am a christian and lay-preacher. I worked in finance for 25 years but I am currently unemployed and looking for a new opportunity when my pain is managed effectively. I enjoy writing, public speaking, mentoring young people and spending time with family and friends.IMG-20170818-WA0004

 

When you meet someone for the first time, what do you think that they see or observe about you? Maybe the color of your eyes? Your radiant smile? Your height? Weight? Or whether or not you wear spectacles, walk with a cane or use a wheel chair? It is possible that a person may see and notice all of these outward features but for me, there is one thing that whilst all-encompassing to me, it is something that no one sees. I consider that it is significant but it is also invisible (at least to the untrained eye), and that is my pain!

Pain, caused initially by an injury and then by disease. Pain that wakes me up and often prevents me from sleeping. Pain that dictates my activities or lack of them. Pain that varies, but is my closest companion. I have never asked for its presence, but daily I am forced to contend with this intrusion, this reality, something that cannot be explained and that has a devastating effect on the quality of my life.

 

My “relationship” with pain, for want of a better word, began in the autumn of 1989 following a serious road traffic accident. For about six months I was unable to leave the house alone and needed help with every aspect of my life. Over the months that followed, my father and the physiotherapy team at my local hospital helped me to recover my strength thereby allowing me to return to work.

It was my dream to return to the relatively pain free life with the energy and freedom that many of my peers in their mid 20’s enjoyed. Sadly this was not to be and I had to find and accept a new and unwanted reality. Even though I was a Christian, this was still a challenge.

I was truly grateful for life, after all, how many people do you know that have been knocked over by a fire engine on call and have lived to share their testimony? I knew that I was blessed, but somehow at the back of my mind, there were some nagging questions: Why did this happen to me? Did I do something wrong? Suppose I had taken another route home or left work on time would things have been different?

 

As I battled with questions that I could not answer, I had further complications as I encountered a modern-day equivalent of Job’s comforters. People came to pray, give thanks, and to comfort me but sadly a few came to discover what “secret sins” I had committed that had led to this terrible accident.

Over the next few years as I grappled with the effects of widespread chronic pain, I found myself dealing with people who demonstrated a lack of understanding about chronic conditions and whether or not my pain was real or imagined. I asked God for healing, friends and family came for special prayer sessions, but when healing did not come, my faith was questioned.

 

What do you do when the promises of God don’t seem to apply to you or when you look around and hear stories of miraculous healings? When people question your desire to be healed, to be whole, to once again contribute to your church, your community, your family or even take care of yourself?

 

I didn’t have the answers or the strength to cope with them alongside the fatigue, nerve pain and all the challenges that both fibromyalgia and complex regional pain syndrome, brought to my life.

 

Moving forward however, I try to encourage myself and others by what God shows me through His Word. No matter how hard it is, I still have HOPE! Why? Well after nearly 20 years in chronic pain, I had another life-changing accident, one that left me unable to work and crippled by excruciating pain. Yet in all of this time I have been able to eat, have a roof over my head and I have my basic needs met. Has it been easy? Absolutely not! I lost some things that were important to me but I held on to that all-important, life-saving ingredient, Hope! Here’s how the Apostle Paul describes it in Romans 5: 3-5 ESV:

“3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Hope as described here keeps us from being disappointed. Life is difficult for those who are suffering, but believing that a better day is coming, gives us hope. The Apostle Paul also has a disability, we are not told exactly what it is, but we know that he prayed three times for it to be removed.  When God chose not to, Paul accepted that God’s strength would be revealed in Paul’s weakness:

2 Corinthians 9: 7-10 Message

7-10 “Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, my grace is enough; it’s all you need.
My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”

 

When I feel weak I go to God to receive strength from Him so that I am able to continue with the life that God has given me. I have lived with chronic pain for 28 years now and some days I am unhappy about the pain that I feel, that no one appears to understand and that no one sees. When my invisible companion tries to control my life, I try to reflect on better days and lift my heart to God who gives me hope.

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

I am honored to introduce to you a beautiful Lupus warrior. Aliccia is sharing an amazing post with us in honor of Lupus awareness month. Please share to help us raise awareness! Who better to tell you more about this courageous warrior than Aliccia herself. A huge thank you to Aliccia for sharing some of her story with us.

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Hi! I’m Aliccia and I’m 24 years old. I love tea, Japanese cars, Netflix, good books and cold weather. I’m a Californian currently living in Texas with one fur baby named Takata. I like smiling, and I am proudly one of Jehovah’s Witnesses. I’m obsessed with galaxies and I like to write on occasion.

 

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

By: Aliccia Rico

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My quest started in late 2015, on a cold November morning. I couldn’t take the pain and discomfort of being in my own body anymore. Selena Gomez had been all over the media talking about how she had a disease called Lupus, and I’d been battling some sort of illness that oddly sounded just like the one she’d been interviewed about. It seemed as though I’d been dropped off in the wilderness and told to make the best of the situation… Even though the joint pain and my hair falling out drove me crazy, almost to the point of a nervous breakdown. I’d joke about being a pro napper, but fourteen-hour stretches wouldn’t even aid the fatigue I felt on a daily basis… Let alone be normal hours of sleep. This wilderness I was in felt isolated from everything I thought I knew about myself, and those around me. Who could I trust with telling about this thing that has been plaguing me? Am I crazy?

I had been seeing a rheumatologist that never took my symptoms seriously. He had me on a Remicade infusion therapy that made me worse than I was before. It took me three infusion sessions and hundreds of dollars out of my own pocket to leave this office… He even laughed in my face when I was diagnosed with pleurisy at an urgent care. I’d fallen into a depression, even when I started seeing my current rheumatologist who diagnosed me as having “Lupus-Like Syndrome”, she doesn’t want to diagnose me with Lupus officially yet. The light at the end of the wilderness I was in got dimmer and dimmer. It felt as though the life was being slowly drained out of me, and I started giving up all hope that I had.

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I found myself months later standing in my restroom, my face wet with tears and red from inflammation. The frustration finally hit its peak the moment I got out of bed. My hands couldn’t open all the way, my hair lay in the sink in chunks. I couldn’t recognize who was staring back at me, the breath gone from my lungs. How did this happen? Why did this happen? I threw all the items on the counter onto the floor, screaming at the top of my lungs. I fell to the floor and started sobbing, trembling from confusion, sadness, and anger. I was angry at my body, angry at how much more my hands and arms hurt from my moment of insanity. All I wanted was for all of this to be over. I looked up to the ceiling, my breath catching in my throat as I try to clear my head. My phone had been ringing for the past five minutes, and I didn’t care.

 

Finally, I grabbed my phone as best as I could, seeing a familiar name across the screen. I unlock the phone, my breathing slowly getting back to a normal pattern. I fixated on the words on the screen, making me cry even more.

I don’t know how it feels,
but we’re in this together.
You’re not alone… I love you.

 

I closed my eyes and started praying. The light at the end of this wilderness had been in front of me all along! Years of frustration, agony, and depression began pouring out of me. I thanked my God, Jehovah, for giving me such an amazing person to help me through this hardship, and for never abandoning me. The more and more I poured my heart out, the more I felt the strength building in my bones. The thing about faith is that it’s based on trust, and trust is what I had to give to my God to endure the obstacles put in front of me. That day, my whole outlook on my disease changed in various ways. I put away the makeup that I would use to hide my skin, I chose to smile and not dwell on the pain or weaknesses that I had now become accustomed to.

 

I refused to stay complacent, depressed and have a “woe is me” attitude. I’d read stories online for support with this disease, but none of them were even remotely positive. The whole goal with living with any type of autoimmune disease is to find positive support and know that you’re not alone. I didn’t and don’t want special treatment, nor do I want to be a walking billboard of the typical “but I don’t look sick” movement. I want people to see me for who I am, not the unfortunate disease I have. Facing each day with a prayer, relying on the support of my spiritual family and friends and telling myself I could face the day helped me personally so much.

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In one of my favorite scriptures in the Bible, the Apostle Paul wrote, “So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. For when I am weak, then I am powerful.” (2 Corinthians 12:10) I take those words to heart because in my weaknesses, I have been the most powerful. While in a flare up, getting out of bed is an accomplishment, making tea is a milestone, getting dressed is a feat. My faith is stronger than my weaknesses and my illness, stronger than the anxiety and depression that I face, my faith gives me the strength to walk when I am so physically tired that I want to collapse, it gets me through each day.

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That day I had my breakdown, I was at my lowest point in the wilderness called Lupus. My faith brought me out of the wilderness to a brighter, clear road that showed me that yes, I do have an autoimmune disease, but I can get through these challenges I face (even as simple as opening a jar) no matter how hard they are. Everyone’s autoimmune disease quest is different, everyone copes with things differently and fights their battles in their own way. I admire those who are enduring chemotherapy, those who are mothers and fathers while having a form of autoimmune disease, those ones who need canes and wheelchairs. Your strength is admirable, and in no way could I ever make light of what others go through. We’re in this together, and we will get through it… Day by day.

 

Remember, when you are weak, you are powerful.

 

When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses

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When Chronic Pain and Illness Take Everything Away: How to Mourn Our Losses is a practical book for anyone who battles a chronic illness or chronic pain. Esther is an inspirational individual who has thrived in many aspects of life despite chronic illness, without a doubt she is a role model. Reaching out as a compassionate friend she gently teaches her readers about the grieving process and coping with chronic illness and chronic pain. She is transparent with her faith journey as well as her struggles and victories.

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Grief is an overwhelming aspect of chronic illness that threatens to take over. It breaks a person down. Those facing chronic illness and chronic pain grieve the person he or she was before the pain, their past, broken relationships, shattered dreams, and the person they had hoped to become. Chronic illness alters every element of life. At times, with the pain and additional symptoms, those with chronic illness don’t want to deal with the emotions. However, emotions are healthy and a part of life.

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Personally, the emotions tend to hit me like a ton of bricks in a delayed reaction. Grief with chronic illness was no different. I get consumed with daily life not processing what I am going through on an emotional level. Maybe you can relate. Once the emotions hit it is overwhelming. I officially got my diagnosis in my late adolescent years. I took a season to grieve all the things I missed out on like prom and mission trips I had planned out. That season I grieved the friends I lost.

I have worked through a lot of the grief but there is still some work to be done. Support is essential when working through it. This book provides a positive outlet for grief. One of my favorite things is that there are writing prompts to assist the reader in constructively working through emotions.

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Amazon description: “Chronic pain, illness, and disability take so much away. Sometimes it seems as though they take everything we have ever loved and held dear.

Our physical abilities and our jobs. Our current passions and future dreams. Our finances and our friends. Our sense of community and our ability to engage the world in ways we could before.

Chronic pain takes away our sense of self and who we always thought ourselves to be. How in the world are we supposed to deal with this fact?”

Make sure to pre-order your book here! In addition, feel free to drop by Esther’s blog: Life in Slow Motion.

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.