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.

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Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Great Spoonie Volgs

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

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

Lets Talk IBD

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

Inflamed and Untamed

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

 

Helping Other Despite Illness

Before stepping into my currently reality, I was able to serve others regularly. I was able to help at free dinners, do yard work, mission work, help out with a retreat, youth group, and a few other small things. I love to help. I figured I would only need to step back slightly for half a season due to my health (mainly due to getting answers and five operations in four years). However, that was not reality. My limitations weighted me down as I realized how I had been serving was no longer an option physically. The desire to be used burned with in as I pleaded with God to use me in any way. This is still something I am working through.

I adore running Chronically Hopeful, but there are days it doesn’t seem like enough (there is plenty of work, but I wanted to serve more).  Most of you know that right now I am leading with a few other women two online Bible studies. I have also joined the ministry team for my online Church.

When God lovely nudged my heart to lead Come With Me, I attempted to tell Him I was too busy. Can you guess who won that disagreement? He did hands down. One of the chapters we are reading this week is about Jesus’ presence in a storm, specifically when the disciples woke up Jesus in a panic followed by Jesus simply rebuking the storm.

We all encounter different trials in different seasons of life. Trials come so that God can discipline us, mold us, enable us to comfort others, and bring us closer to Him all while bringing glory to His name. The Bible calls us to carry one another’s burdens. Do you know of someone in a trial? Trials are demanding. Support is essential during these times.

Most people who follow Chronically Hopeful are chronically ill, so the remainder of this post is written with you in mind. How can I support someone when I am physically limited? It can be intimidating to offer help when you feel flawed. You might be turned down completely, I have been many times, but that’s okay. Offer whatever you have to God, “not enough becomes more than enough when we give it to God.”

Keep in mind the little things make a big difference. Everyone needs encouragement. The simplest notes of encouragement go a long ways. Use Facebook, e-mail, or snail mail. A short note with a Bible verse or a line or two are excellent ways to start. If you want a little more of a challenge write an entire letter and be personal.

Find an in person project that is short term and can accommodate you needs. This might be assisting in the nursey at church, being a greeter, making a meal for a family, or helping a child with homework in the neighborhood.

There is nothing like being in person, but at times illness traps us either keeping us homebound or sucking the energy (and spoons) out of us. Volunteer online. I know at first it is a strange concept. Support groups can use help with events or managing pages or responding to comments. Online Bible studies are another option.

Do you find it difficult to reach out and help others? Share your struggles. Share ways you have been successful in this.

 

General Medication Guide

       

I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

Five C’s of Coping with Stress

Stress comes with chronic illness.  Get one chronic illness and receive more stress than you dream possible at no extra cost! Not the type of deal I was hoping to receive. We all know that stress is bad for us, especially for our illnesses though it is nearly impossible to avoid. Like pesky mosquito on a summer day.

There is stress at work. Stress at school. Stress at the doctors, the pharmacy, with the insurance company, and stress from the endless testing. There is stress at home when the kids constantly bicker. Stress from the medications. Stress from the endless bills. Stress from the pain. There is no way to just avoid stress. Therefore we need to cope with it and this is not always an easy task.

The five Cs of Coping with Chronic illness Stress: a short guide.

Cry

I have always been an emotional girl. Look at me the wrong way and I’ll start to ball my eyes out. Crying is a wonderful and healthy way to cope with stress. Releasing the tears can help the body work through stress and regulate various levels in the brain. A good deep cry can assist in coping with stress.

Cuddle

Who doesn’t love to cuddle?!? I mean seriously, what is more comforting then grabbing your furry friend and spending some quality cuddle time? Cuddles and hugs come with extra health benefits besides being awesome for stress like lowering blood pressure.

Coloring

Yes, color. Your favorite childhood pass time is not only acceptable in adulthood but it is recommended and healthy. “When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. “The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress (huffingtonpost).” The bottom line? Coloring is a creative way to combat stress.

Chatter

Call up a close friend and vent away. Letting it all out helps.

Change

A change in scenery can make a difference. If you are able go for a walk, go over to a friends house, or to your favorite coffee shop.  Go some where different and engage in a different activity.

Share how you cope with stress.

But You Don’t Look Sick

“But you don’t look sick..” A saying that chronically ill people hear way too often. For those who have recently meet me I look like a normal 21 year old girl. But my family and church family are able to see the difference in me.

The girl who stares back at me when I look in the mirror is someone I do not recognize. That girl is not me. She has a rounded face, pale skin, thinning hair, and tired eyes. I am…or in reality was a girl with dark olive skin, bight and energetic eyes, thin, and tall with thick dark brown hair that most people mistake for black. I have changed drastically sense becoming ill. I am not the same girl physically or emotionally. Not all the alterations have been negative. It is difficult sometimes to be so different compared to who I was before I became ill. Medications have altered my body somewhat, but the majority of the physical changes are due to Lupus. At times looking through photos is difficult. I like who I have become. But the physical changes are hard to grasp. My body doesn’t feel like my own… it is like borrowing something that doesn’t fit right. Appearance doesn’t matter as much as it use to. It is more about feeling healthy and functioning; living again. I try to focus on this and the hallmark of what inwardly make me, Victoria. Some days it works amazingly. With no make up and hair up I feel like myself and I feel pretty.  Other days, are more difficult after layers of make up and many spoons wasted tears of frustration wash it away.

         

“But you don’t look sick..” is never a comforting phrase. People might think it is a compliment, but it is not. It makes us feel like you do not believe how sick we are. Our outwards appearance, does not reflect the war going on inside of our body twenty four seven. Thankfully the destruction is not visible.

Those who are chronically ill learn all the make up, clothing, and hair tricks. She learns to fake a smile. To be a ray of sunshine. To pretend to be a healthy girl. Behind closed doors, everything is different. The make up comes off, the hair goes up, pj’s on, and the tears flow. With her head buried in her pillow she wonders how she made it through another day thankful no one saw though her mask. Insiting that she doesn’t look sick only adds to her struggle. Your words weigh more then you know.

Your world drastically changes in every way possible when you are chronically ill. It is like living on another planet in comparison to how thing were when you were healthy. Adjusting is difficult. You need to be patient with yourself. Allow yourself time to adjust to all the alterations your illness has imposed. Remember, that there is much more to you then the person looking at you in the mirror. Yes you might look different and that is okay, you are still beautiful. In addition to physical beauty, you have a stunning personality.

How do you cope with the changes your illness has caused?