Odd Selfies

Why do girls take hospital pics or selfies when we feel sick as a young spooine? I didn’t understand at first. It isn’t for sympathy. It is to remind me what God has allowed me to overcome by His grace. To remind me of His goodness. It helps me to see how far I’ve come. The battle has been won. Victory in Jesus. Celebrate each small mile stone as you walk the road of chronic illness. Do you have a selfie or photo that others might think is bazaar? Share the photo and why you took it in the comments.

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The H Word

If you have been admitted to the hospital you know it is taxing on the body with all the testing, getting up in the middle of the night for blood pressure checks, and usually a lot of pain. Additionally, at times you may feel isolated, depressed, or anxious. The hospital drains one emotionally. Everyone longs to hear that beautiful H word… you can go home.

There is great comfort being in your own home surrounded by family and familiar things.Yet the transition is a challenge with vague discharge instructions. There is a lot of help in the hospital so keeping up with all the care at home can be difficult. It can take a few week to readjust completely to being home.

I have been admitted four times for different reasons. Each time adjusting has been a little difficult. I have several tips to make the transition home a bit smoother and less stressful.  I have seen very few blog posts or vlogs that talk about the transition in depth.

Depending on why you were admitted you should consider buying a pill crusher. Each time I was admitted I have struggled with my stomach. It is hard for my body at times to break down the pills and use them properly. I got mine at Kmart for under five dollars. The pills don’t taste amazing but it does help some. Find a system that works for you and stick to it this is not the time to be skipping medications.

Being in the hospital and going through a medical tragedy can deplete one of  a variety of vitamins.  During my last admission I was not able to get in all my medications and none of my vitamins. I felt a huge difference without my newest vitamins. I have no doubt that the vitamins I am on are working. Many times the hospital food is not the greatest and aids at times to one feeling worse. From being in the hospital If you can find out what extra vitamins you may need, even for a few weeks it is helpful. It is not a magic pill by any means, however, it can help keep down stress levels.

Personally, I struggle greatly with my pain levels especially after the hospital. Have a pain management plan in place. This plan will look extremely different for everyone depends on the doctor you may be able to use pain medications if not you need to become very creative. I will be doing a video sometime in August about all my pain management tips.

Rest, rest, and rest some more. It is tempting to try to get back to a normal routine but that is not what’s best for at least the first few days to a week. Pushing too hard too soon can be a recipe for another health disaster.

On that note also destress as much as humanly possible. As we all know stress makes our health worse even by a little bit. I set up my medications and vitamins for at least a week so that I do not need to stress about remembering to take everything. Moreover, I write, read, paint, do string art, spend time with my cats and puppy, and talk to friends to keep my stress levels at bay. Do not neglect your time with God. Personally, I do a devotional, an online Bible study book, and journal prayers. You can also utilize worship music. Find the best coping methods for you.

Baths are a must use tip for me. I always use two types of Epson salt along with a bath bomb. It helps the body to regulate the magnesium levels. Furthermore, it can aid in reducing pain and sleeping better.

Fueling your body with the correct things is fundamental as well. Like I said,I have a ton of GI issues so this is extremely difficult. I have not been hungry sense coming home from the hospital. Due to my mast cell I am pretty limited with what I can eat. I highly recommend that you figure out what you can tolerate. If you can get in fruits or veggies that is essential and helpful as the body recovers.

Share your transition tips in the comments.

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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The Struggle of Our Today

“We’ll tell you about our broken places of yesterday but don’t dare admit the limitations of our today.” Lysa Terkeurst.

Wow. These words are heavy, exposing the truth. It is easier to talk about the past. How we have overcome trials demonstrating our own persistence and strength. Of course, from time to time we will include God, most times as a hero who swept in and saved the day. Rescuing us from the storm.

But talking about today? Being transparent; honest? That is a different story. It takes guts. We like to appear to the world as having it all together. As if we can accomplish this insane to do list, save the world, and be home for supper. In reality, we are falling apart- most people are facing limitations daily, which could be illness, addiction, family disputes, or finances.

 

With a chronic illness, we act often. Taking on the role of a healthy and normal individual in order to blend in or make others happy. A friend asks how we are… and too often, we smile straight up telling a lie, “I’m doing great”…. Desperately we even debate which lies to tell our doctor. What is worth sharing? Will he or she believe me? Is it worth the frustration? It is challenging, to be honest, and the individual that God created us to be. Isolation closes in on us; as we swim in the sea of invisible illness.

 

Without a doubt, there is a time and a place for everything. God’s word echo’s this in Ecclesiastes 3:1, “There is a time for everything, and a season for every activity under the heavens.” At times taking on a role has its advantages, and at other times, it is downright damaging. There is also a time for raw honesty. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up. “You weren’t designed to go through suffering alone. As times get tough — and they will — reach out and reach up,” Rick Warren.  Putting yourself out there is scary. Sharing your heart is healthy. By sharing with others, you become an inspiration and encouragement to others. Struggling does not make you weak, it makes you human.

Additionally, we ask who can we be honest with. Lately, I seem to keep hearing the same message, we   were not meant to do life on our own. We were made for community, not isolation. But in all honesty, it easier to say than do. Falling into isolation becomes easy with an illness. Most times, it is not intentional. We flare up, battle fatigue, and lose many friends. Having someone we can confide in about the struggles of today is rare. There are people who hurt us, leave us, and betray our trust.

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I think it is hard, to be honest in this way because we don’t want to be negative or a burden to others. At the same time, it is important to do so. Not only is it healthy, but it allows others to support us and specifically pray with us then allows us the chance to offer the same to them. Being honest allows us to share with others how God is working in our lives right now.

 

Personally, I have two friends who I can be brutally gut level honest with, knowing in my heart that no matter what they will still love me and will pray with me. Their friendship is a beautiful treasure. I hope you have at least one person who you can be honest with about the struggles of today.

 

Lord,

 

You are the God who sees us and knows us completely. Teach us how to be honest about the struggles of today. Bless us with people who we can share our burdens with and support. Allow us to continually bring glory to Your Holy Name.

 

Amen

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?

Effects of Chronic Pain

I have struggled greatly with pain for many years. It began as a child but was not as intense. I remember hearing people complain that they were in pain and it was just part of ageing so I figured it was a part of growing up. Little did I know it was abnormal. Searching for answers was no easy task. I am diagnosed with Systemic Lupus Erythematosus, Ulcerative Colitis, Hyperadrenergic Postural tachycardia syndrome, Ehlers–Danlos syndrome, Endometriosis, Mast Cell Activation, and Hereditary Haemorrhagic Telangiectasia . In addition I have chronic kidney stones, currently battling abdominal pain, frequent cyst, frequent infections, and an extra kidney.

With the opioid endemic it is nearly impossible for most to begin an opioid for pain. Personally, I am allergic to the “alternative” medications such as Cymbal,Amitriptyline, and Neutron.

I can understand to a degree the opidoid endemic. But the other part of me does not get it. People should just accept the pain to some doctors.  Furthermore, those who do drugs will always find a way to obtain them.

I have had to be creative in my pain management. Pain can be dictating causing one to quit their job or miss evens. Weakness is common due to lack of movement/exercise. Moreover, pain causes mood disturbance such as anxiety and depression. Many chronic pain warriors struggle with painsomina which is insomnia due to extreme pain. It is all a vicious cycle. It also effects ones memory also known as brain fog.

Most times doing absolutely nothing is not an option. I have a lot of outside of the box pain tips and I will be starting a YouTube channel. I will be making a pain management video with all my tips. If requested I will also do a blog post on it.

Unable to Eat

I was feeling good. Really good and beginning to actually function. I was hungry occasionally, tolerating sun, able to accomplish more, losing water weight, less pain, and more energy. I was feeling more confident about my treatment plan and relived that my efforts were paying off. I had visited family to help out with an emergency. Than of course, went back home. The following morning I felt a bit off. I thought I just over did it a little. However, by the following morning it was clear something was wrong once again.

I began out of no where vomiting. To be clear I never vomit with any of my chronic illnesses. I had the runs. Unable to eat and barely able to drink. I ran an extra bag of Saline fluids because it was a Saline day thankfully. I toughed it out all weekend. Finally giving in I went to the Emergency Room only to be “accidentally” sent home. I continued to get worse each day. I began having palpitations, chest pain, all my pain was intolerable by this time, and unable to eat more than two crackers at a time. Due to vomiting I missed all my meds, vitamins, and supplements for about two weeks. On the bright side I’m certain now this plan works.

I have never had to go to the emergency room twice in one week. I was hesitant and frustrated. It was not a smooth trip by any means. In fact, the doctor only agreed to treat me and admit me once my gastros office yelled at her for saying I should just be sent home. I had seen this ER doctor one other time for a mast cell reaction. She didn’t understand it or want to call my doctor so told me I was over reacting. #RareDiseaseStruggle

Finally, I was admitted, as I said. However, no one had much direction on what to do other than offer me food and some encouragement to try to eat. If I had energy it would have been tempting to yell at someone because if all I needed to do was try some food I wouldn’t need to stay in the hospital! They ran basic labs, a stool test, ultra sound, and part of a colonoscopy. They yielded results but nothing that gave them direction for treatment. My body was starving when I was admitted and left. I had half a dozen stones, low blood sugar, a broken cyst, and low vitamin levels. I slept in the beginning about 20 plus hours a day. In perspective I never nap.

This was by far the most frustrating hospital admission I ever had. While waiting for my scope I turned on worship music and just cried from the pain. I had to try to think ahead as most times it took about an hour if I needed anything.  When I got to my hospital room I struggled flushing the toilet from being weak.

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Finally I could get in a few bites of soup. So they allowed me to go home because no one was sure what else to do.

So why can’t I eat suddenly? Well, I have of course a well thought out theory. I believe I either got food poisoning or a virus. Due to this I was unable to keep my steroids in so I encountered a mild adrenaline crisis. Additionally, mild flare up of UC, EDS, POTS, and Lupus. To top it all off I have my suspicions that some sort of a mild motility disorder is going on as an overlapping illness with the EDS, Mast cell, and POTS trio.

My days currently are spent with my pets as I try to finish my bachelors degree. I attempt to stimulate appetite and eat extremely small meals. So far I am down about 18 pounds. Outside of that it is mainly resting. There’s not much you want to do when always running on empty.

My goal is to get back in all my meds and supplements because they have been life changing for me. No I have not acquired a magic pill but just another tool to add to my tool box. I follow up with my PCP this week and will be discussing the possibility of a UTI. Furthermore, bring up once again the fact that I am in pain when I eat still. I will see someone who works with my gastro and see if we make any progress. At this time, my doctors are against TPN. However, soon I am getting a PICC line Finally placed for my fluids.

I have 100% seen improvement just to be clear but improvement doesn’t mean I never have set backs. Everyone with an illness has ups and downs. I know in my heart this could have been much worse than it was. I will be working on getting out info on the elements of my plan that help me so much. Additionally keep an eye out soon for a transitioning home from the hospital post.

For when I am weak the Lord is my strength. My provider. My everything. Praise Him in every storm. I am beyond thankful for those He has placed in my life as support. He embraces me when things feel like a nightmare and provide comfort. He has chosen not to heal me but to hold me and I will praise His name forevermore