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.

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

Moon face

 

 

 

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!

Diagnosing Lupus

There wasn’t a defining moment or even chapter in my life pointing to when Lupus invaded my body.  The pain began at age six. I quickly learned how to fake well. Overall ignoring the pain. It was mentioned off and on through the years to my pediatrician. No one was persistent with any of my symptoms or complaints. My first severe flare up was at nine years old. I had back to back ‘viruses’ blamed for every intense symptom. I was put on homebound, unable to go to school. The older I got the sicker I got. The more intense the pain. The more symptoms appeared.

I longed for a diagnosis. For someone to take me seriously. I was told countless times I was too young to be in so much pain, too young for a chronic illness. The first rheumatologist I saw did no testing, yet placed me on a medication. At first, I was relieved and full of hope. That is until I began having an allergic reaction. The doctor insisted on increasing the medication. I began having psycho seizures and stopped taking the medication. I saw a few other rheumatologists. Everyone eagerly promises to get to the bottom of my case at the first appointment then quickly becomes discouraged telling me they are clueless or there is nothing wrong with me.

One day I was discussing my frustrations with my cousin. She asked me if I had been tested for Lupus. I had no clue what Lupus was, but I had not been tested for it. She advised I check out the Lupus Foundation of America. Which of course, I did that evening and I was in awe. This illness was a perfect fit. It described every wacky symptom I had. From that point forward I did research on Lupus and spoke with the foundation several times learning as much as possible.

My symptoms mirror a perfect textbook case. In the beginning of my case, I believe due to my age, my labs were not always positive. I have had some of the top doctors on my case all of who believe firmly I have Lupus, but the way my body functions is different from most people. I am not normal by any standards.  After a long battle, I got my diagnosis. As soon as I received it I asked for it in writing. I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now.

I switched doctors due to going away to school then switched again due to getting to sick and coming home. I had a doctor take me off all my medication including Plaquenil. The doctor told me I just had Fibromyalgia. He sent me to a Fibro doctor claiming she was the best in the field and she would agree with him. Well, that backfired for him. She told me I was a Lupus patient and needed a better doctor. She quickly got me into the team of doctors I am with now. Though, we frequently become frustrated still with my case and have different options I love my team of doctors. Having good doctors is a true treasure. Knowing that they will listen, are trustworthy, and will try to help makes things slightly less stressful.

I came home a few weeks early from college my first semester with the plan of getting things under control and then going away again the following semester. I found out I had severe double pyelonephritis (kidney infection). It lasted a little over four months. My body has not been the same since the infection.

I thought knowing the name to the monster reeking havoc in my body would be my big break though, the end of my major struggles. I thought I would get my life back.

It is also a battle keeping a diagnosis. Medication makes labs look pretty than the doctor begins to overthink.It seems when blood tests are postive they are never positive enough. When additional test records something alarming it is brushed off to the side. It feels like a game. One I don’t want to play. My symptoms equal the classic Lupus textbook case, but my labs do not always reflect this.

Diagnosing any autoimmune disorder is a complex task. Even in the medical field, people are not educated enough about autoimmune diseases- especially when it comes to Lupus. This is one reason awareness months are vital. Not only do those who suffer with the illness get support and educated, but doctors have new chances to become educated as well as people not directly affected by this particular illness.

Migraine 101

 

 

The word migraine is a familiar one to most yet there is a lot of confusion surrounding them. Migraines are anything but straightforward. In fact, many medical professionals debate over the definition, cause, and treatment.

The basic foundation of the definition of a migraine according to Webster dictionary is a condition marked by recurring moderate to severe headache with throbbing pain that usually lasts from four hours to three days, typically begins on one side of the head but may spread to both sides, is often accompanied by a variety of symptoms. Some people believe that it is a genetic neurological disease.

Of course, there can be other causes in addition to genetics such as stress, trauma, or chronic illness. Many times the cause of a migraine disorder is unknown.

There are a total of four stages of a migraine, but not everyone encounters each stage which is prodrome, aura, headache, and post-drome. First, prodrome occurs one or two days before a migraine. Many people do not experience aura which is nervous system symptoms before or during a migraine. The stage headache also is known as the attack is an actual migraine which can last anywhere from 4 hours to 72 hours if untreated according to Mayo Clinic. Lastly, post-drome occurs afterward for around 24 hours.

Being able to recognize the signs of a migraine are essential. A migraine can be accompanied by an array of symptoms.

Some symptoms include

• extreme pain,
• light smell or sound sensitivity
• nausea
• vomiting
• pain on one side
• pain down the neck
• vision changes
• numbness
• Vertigo
• Feeling lightheaded or dizzy
• Puffy eyelid
• Difficulty concentrating
• Fatigue
• Diarrhea – constipation
• Mood changes
• Food cravings
• Hives
• Fever

Symptoms of a migraine are vastly different for every person. Furthermore, symptoms may vary different episodes. Likewise, triggers are unique to everyone.

Some triggers include but are not limited to

• Stress
• Hormonal Changes
• Weather
• Foods such as aged cheeses, salty foods and processed foods
• Skipping Meals
• Dehydration
• Lack of Sleep
• Additives in foods like MSG
• Drinks like alcohol or caffeine
• Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Strong smells — including perfume, or paint thinner

 

The majority of the time migraines are diagnosed on a clinical exam and from discussing episodes with a physician. Additionally, they will consider medical history, symptoms, and perform a neurological examination. Other medical tests may be ordered to rule out another illness or if the pain seems unreasonably severe or is unusual.

 

 

Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.

Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.

I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.

Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.

Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.

My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.

Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.

But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.

Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

• American Stroke Awareness Month (promoted by the National Stroke Association)
• Arthritis Awareness Month
• National Asthma and Allergy Awareness Month
• National Celiac Disease Awareness Month
• Hepatitis Awareness Month
• Lupus Awareness Month (promoted by the Lupus Foundation of America)
• Melanoma/Skin Cancer Detection and Prevention Month
• Mental Health Month
• National High Blood Pressure Education Month
• National Osteoporosis Awareness and Prevention Month
• Preeclampsia Awareness Month
• Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
• Fibromyalgia
• Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

A Mother’s Perspective: Chronic Illness

I am so excited for today’s post. We have a courageous mother of a daughter with several chronic illnesses. It has been an honor for me to speak with her briefly and to read a bit of their inspiring story. I hope you are encouraged. ~ Victoria

I am Kimberly, a full-time single mother, but more importantly mother of a teenager with chronic illnesses. EDS, POTS, MCAS.
Receiving a diagnosis is not a destination, but more so a journey.
Here is  a brief account of our journey to date:
It seems like yesterday on one hand and a lifetime on another. Three years ago during a rheumatology visit, unexpectedly during examination, the physician began piecing random dislocations, atrophic scars, fatigue, velvet skin, and overall illness into EDS. As he was identifying pieces, he stated this appears like Ehlers Danlos syndrome. I have worked in the medical field as therapist for 20 years and this was new to me. So like most, I instantly googled everything I could sitting there. I recall immediately being referred for blood work, Physical therapy, and cardiology that same day. Upon leaving his office I don’t think I will ever forget the look on his face. It was one of concern, sadness, and unknowing to me an awareness of a journey that was heading our way. As my daughter and I sat in cardiology she jokingly ask “so what do I have”? We proceed to laugh as she said EDS meaning explosive diarrhea syndrome. We laughed and I knew whatever it was we were going to conquer it.
As time progressed with additional falls and dislocations therapy ensued. It suddenly appeared dizziness and nausea were occurring. New referral and now POTS (Postural orthostatic tachycardia syndrome) diagnosis added.

Ok, but now what about these strange rashes. Well, that lead to MCAS(Mast cell activation syndrome). A few other diagnosis came along being eosinophilic colitis and pineal brain cyst through testing. Most recently TMJ and cervical compression issues also noted.  If you have been through the diagnosis process you know it’s not so easy as picking up the phone and immediately obtaining a physician appointment. Some list were 3-6 months long with genetics 1 year. Then you add follow-up visits for a wide range of disciplines. It’s overwhelming and difficult to manage a ‘normal life’ whatever that even was.

In gaining awareness of these disorders and living it daily I have found a new appreciation for anyone experiencing these. I have seen the suffering from physical pain, fatigue, and mental components from anxiety/depression that a teenager should not have to deal with it. Being a teen is hard enough, let alone adding a chronic illness. Yes, it’s a struggle. Do I still feel we  will conquer this….. no. We have accepted at this time there is no cure. We manage symptoms. Do I feel deflated…. yes. As a mother, I like most want to fix my children’s problem. I have found that being supportive and her biggest fan is the best I can do right now. I have listened to her requests to give her more control when she declines testing. I get it when she says “why should I it doesn’t change or fix anything”.
I want others to know it’s challenging as a parent, but it will be ok. You have to be prepared for sudden ER trips that will change your family plans, hoping that loud sound wasn’t a fall or passing out again, keeping a watchful eye for strange rashes, preparing for school IEP meetings, and wow what about that mediset. Goodness, the medications seriously is this all? Expecting a teenager to recall all these and learning to fill set herself…. What happened to driving, boyfriend, and social issues teenage parents have? They are still there, but different. Friends change, the real ones stay, but it does change. No one prepares you for this.
With all the losses you feel, I promise that if you embrace the journey and take the good with the bad it makes life better. I don’t know what the future holds, but I am hoping through advocacy and research more treatment options become available. I know joining a support group locally was one of the best things I did. Talking to people that have been where I am and offered supportive listening. I am forever grateful to them and blessed to have a wonderful family that help. Are there days when I’m mad… yes! I’m angry and scared. What happened to college based on interest, not physically accessible and near physicians in the area!
You as I have learned, having a chronic illness, is life alternating for everyone. I surely wish my daughter didn’t have it. However, she does and I intend to ride this journey with her and advocate to the best of my ability for her and others like her so that there is dignity, respect, and research to aid in hopes of a cure one day. This is my journey and hope for a final destination.
Chronically Hopefully,
Kimberly