Taking Back My Life One Day At A Time

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By the time we hit July most individuals have forgotten their goals for the year. What was your top goal for this year? Are you working towards at least one goal? If not, it’s not too late to go back to reaching for your goal.

My biggest goal is to become healthier and be able to function more. Daily I am taking steps towards this goal. Once I knew my doctor was ready to resume my Prednisone taper I knew I had to do a lot of research and to add something to assist me in the process. Regardless of what one does it is a difficult process.

One day I had seen a post on my Facebook from a dear friend who has Lupus along with a multitude of other illnesses. I can recall many times her going into the hospital and literally fighting for her life. But this post was different, she was greatly improving. Of course, I messaged her, because I had to know what was helping her so much.I have to say honestly, when she told me she had begun plant based supplements I was a bit skeptical. I have tried so many things like most individuals with a chronic illness. Supplements always sounded nice but most times I did not tolerate them. Her progress was undeniable so I knew I had to at the very least do some research.

I begun learning how much gut health affects ones body especially in an autoimmune disease. I knew probitoics are fundamental but never found an excellent one. Additionally, I learned that it takes  Microbiome (good gut bacteria) one year to fully regenerate after ONE course of antibiotics. Which shocked me yet made perfect sense at least personally. My freshmen year of college I was on antibiotics for four months straight for a kidney infection. Gut health is key to feeling good and functioning better for those of us with a chronic illness.

So many things we do regularly kill the good gut bacteria leading to unpleasant symptoms. Some examples include  Excessive sugar intake, Drinking tap water (chlorine and fluoride), GMO foods, Eating too many whole grains (plus gluten),Emotional stress, Exposure to toxins and pesticides. Some symptoms people encounter include but are not limited to blood sugar spikes, depression, weight gain, joint pain, and making chronic illnesses worse.

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After much research, discussions, and prayer I decided I needed to take a leap of faith and gives these supplements a try. Sometimes God calls us to take a leap of faith and to trust Him even when things don’t make sense. I was extremely hesitant and nervous to try the supplements that I am on now.I see God using them to enable me to get my life back and to function much better. I am celebrating every small victory.

I am able to tolerate the sun for a bit now. Before getting my picc line I went swimming for the first time in six years. My moon face has went down and I have lost a lot of water weight. I have had to give up many things that normal people my age have or are able to do. One of those things was high heels. Due to being so unsteady, intense pain, and swelling I couldn’t even imagine putting a pair on. Most things do not fit right with eds. For the first time last Sunday I was able to wear a pair of low heels successfully and comfortably. I am still amazed and excited.

The Lord crafted plants with specific purposes in mind some for food and others for medication. I believe using a combination of western medication and natural opens the door for the best possible health when living with a chronic illness. Genesis 1:29-30 says, “Then God said, “I give you every seed-bearing plant on the face of the whole earth and every tree that has fruit with seed in it. They will be yours for food. And to all the beasts of the earth and all the birds in the sky and all the creatures that move along the ground-everything that has the breath of life in it-I give every green plant for food.” And it was so.” Could these planted based supplements be the key to your health improving and having a better quality of life? It is something I believe whole heart everyone with a chronic illness should pray about. Let me know in the comments if you would like more information.

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Can We Truly Work With Our Doctors?

Everyone gives the advise to work with your doctor. And don’t forget have them communicate with one another. Except for, it’s not always that easy. Most times, it is not an open conversation with a doctor. They will tell you what they are ordering, you better make an appointment. You can avoid it for a while but if you don’t do a or b they will state you declined medical advise and they are not responsible. Or if you don’t do it they let you go as a patience. I have had so few doctors who sit down with me and openly discuss my illness, treatment, or testing, or daily life.

I am not the typical text book case, actually none of it is black and white. I am a rare case. One may picture that brilliant team of doctors around the sick person discussing how to help them. Sadly, that only happens on television. In real looks more like this: gastro sees patient tells patient tell your cardiologist to do this. *They NEVER speak* Cardiologist ah, doesn’t look normal tell your rehemunatologist to order this test. In the hospital they argue. And in the end all that is accomplished working this way is stressing out the patient.

The healthcare system does not function decently, but rather it is extremely dysfunctional. Advocating for yourself as a patent is not an easy task. Additionally, it is most times just as difficult for a caregiver to advocate. Some don’t think patients know anything and should just follow directions. At times, asking for something that is undoubtedly needed results in someone telling you that you want another problem or someone gets offended that you are telling them what to do. More and more stories surface with the medical community not paying attention and causing devastation.

Once you are established at a medical center switching doctors is not only a hassle but can be dangerous due to not being able to refill medications. Sometimes, it feels like we are taped in the Spoonie world and the medical professionals hold the key to our escape. Without being able to truly work together we as patients suffer greatly.

What types of medical dysfunction have you encountered?

Gastroparesis

In my personal option rare diseases do not get enough attention so anytime I have the spoons and time I am delighted to blog about any of them. Many doctors are not educated enough about them. Education for us all makes a huge difference.

Gastroparesis is considered a very rare disease but some argue that doctors are just not educated enough to diagnosis it. It can overlap with the trio overlapping illnesses including  Ehlers-Danlos syndromes, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. For anyone who has taken note of the fact that I have the trio I do not know for a fact if I have it and do not think my doctor would identify it. Furthermore, it is too difficult to tell on steroids and I’m allergic to part of the test.

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According to the found Gastroparesis is a GI track mobility disorder. In further detail they explain:

“Normally, the stomach empties its contents in a controlled manner into the small intestines. In gastroparesis, the muscle contractions (motility) that move food along the digestive tract do not work properly and the stomach empties too slowly.

Gastroparesis is characterized by the presence of certain long-term symptoms together with delayed stomach emptying in the absence of any observable obstruction or blockage. The delayed stomach emptying is confirmed by a test.”

Symptoms vary from person to person.

  • Vomiting
  • Nausea
  • A feeling of fullness after eating just a few bites
  • Vomiting undigested food eaten a few hours earlier
  • Acid reflux
  • Abdominal bloating
  • Abdominal pain
  • Changes in blood sugar levels
  • Lack of appetite
  • Weight loss and malnutrition

 

 

I recently saw a story that is a ray of hope in a cloudy sky of chronic illness and would love to share with you to encourage you.

In 2009 I was diagnosed with severe Gastroparesis and another auto immune disease. Gastroparesis is damage to the vagus nerve which doesn’t allow your stomach to empty its food contents properly. So your food can literally sit in your stomach for days instead of hours. It’s pretty miserable. Worse, the few effective medications available to help ease the symptoms were not an option for me due to an allergic reaction to them. In severe cases like mine there is the option to get a pacemaker installed in your stomach, but as I already have a pacemaker/defibrillator I was once again left with no solution to help me. Most recently, I was rushed to the ER because of hypoxia (low oxygen) that saw me admitted to the ICU for three days. I was told that all of my medications, heart related included, had built to life threatening toxicity due to the blockage directly caused by my Gastroparesis. I was in the hospital for another 5 days and taken off all my medications to detox my entire system. I used that “blank slate” to try a vitamin system (I know it sounds crazy, right?!)  which helped greatly with both my chronic and fibro pain. I’ve found through all this that doctors prescribe medication often, because they have no other solution. We don’t think about the life we lose because of the medications prescribed to us or the life the side effects take from us because we think that it’s helping us. For me, the medications that were supposed to help me almost took my life. I needed a balance like most of us of medications and natural elements.

If you would like more info on what this lovely lady did to improve her health please comment your e-mail. (I ask people to do this so that I can respect their privacy and provide ALL the information I have on hand possible pertaining to their illness. If you have an illness I have I have additional tips I would love to share with you).

Need more info on Gastroparesis check out this video

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What does Mayo say? 

Learn more from other patients on The Mighty

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.

 

Encouragement

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It is difficult when your illness dictates your life. When you are taped with no way out. Unable to live. Merely surviving one moment at a time. Hope seems light years away. Everything seems to crumble right before your eyes. Everyone has days when they break. It is okay to have break downs as long as you don’t give up. You have everything you need to overcome these struggles.

You are NOT alone. Others feel this way as well. It won’t be like this forever. Eventually you will be able to live life to the fullest again. We must hold on to this hope, for it gives us the strength to keep fighting. Keep your faith. Stay strong. Hold onto hope.  You have so much strength and courage. You accomplish amazing things on daily. Be proud of all you have overcome.

It’s a season for beauty and blessings. Your strong will provide strength and hope to countless people. There will be positive things that occur because of this difficult season in your life. God’s got this. Rest in his loving arms. Blessing are just around the corner. Be open too receive all the Lord has to offer. Gentle hugs spoonie warriors. Sending prayers and spoons.

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.

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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.

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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.

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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

 

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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.

 

 

The Spirit In Me: Online Church

Online women’s ministry has been a part of my life for a while now. It has opened many doors that allow me to serve Christ even though I am limited physically. I have seen it change lives of many women from all walks of life.

I am excited to share an online church group which I am sure you will

“We are a ministry dedicated to provided church and prayer specifically for people like you with chronic illness and your loved ones as well as people who just need more of Jesus. If you know people who are hurting, who are unable or afraid to go to church, this could be for them. Please share with others!

I have been providing this to people for two years now, and have been receiving requests to copy church into other groups. This makes it a available to everyone, but gives privacy and respect, by keeping it exclusive.

We are unusual as we do not have “live” church, but have a series of posts, that center around the themes of the sermon and devotion, along with opening worship. Everything is designed to be meaningful and encouraging, without being legalistic or judging. Our God is one of mercy, grace and abounding love, and we come to worship and be fed.

So scroll down, soak it up, you can come and go as you please. Feel free to comment and share as you are led. Please keep in mind that for some, this is the only church type interaction they are getting. We are so blessed to have you with us!” – Kim

This ministry was founded specifically for those with chronic illness and your loved ones. We are expanding it and it is open to all who would like to join; those who have a mental illness, single mamas, those feel broken at times, want more time with Jesus, or want more fellowship. This is a ministry of Renewed Minds Online and Chronically Hopeful and will be open all week. We would be honored if you would join us!