Life is a Gift: Guest Blog

When you’re diagnosed with a Chronic Illness, things change a lot.

You  have finally found your answer – what’s been making you feel ill for so long… but now you have to find ways to treat the illness.

Some diseases are “easy”, or rather, straight forward to treat. Some, are as anti treatment as possible.I feel like my condition, RSD, is definitely anti-treatment.

I have had RSD for 7 years now, but have only been diagnosed for 4.5 of those years. Treatments were thrown at me from every angle… nerve blocks, surgery, implants, medications… anything I could try, I tried… But none of it worked.

I’m one of the people who’s body resists treatments in everyway. Sometimes, the treatment will work for a few months… I’ll actually feel.. .“Better.” But then I spiral back into these horrible bouts of pain and suffering that take months to crawl out of.

Over the years of this cycle, I’ve learned one VERY important thing. Life is a gift in every way, shape, and form. We can’t always see it, and it’s not always easy, but I promise it is a gift. You only get it once, so you have to live it to the fullest.

I don’t know a lot of things.

I don’t know why I have these disorders.

I don’t know if I’ll ever be pain-free again.

Some days, I don’t know how I’m going to survive a lifetime of this.

If I live exactly 70 more years, and no cure is found, that means I will spend the next 25,550 days in this same, excruciating pain. There will be good days, and there will be bad days. I just have to prepare.

I can’t live my life waiting for a cure. I can live my life hoping for one, but I can’t just sit around and wait. I can’t let chronic illness hold me back.

I can do this. I got into the school of my dreams in the program I’ve anted to be in for years. I am fully capable of this.

I’ll be in a crap ton of pain doing it, which will make it more of a struggle for me, but I can do it.

I’ve make it through these past 7 years in pain and remained in public school. I have graduated high school and I’m a member of three world-class performance ensembles. I am stronger than this pain.

And I WILL conquer these diseases.

Megan Rae MisnerI was diagnosed with Reflex Sympathetic Dystrophy Syndrome (RSD) in 2008 at the age of 14. It has sent me into a spiral of many of terrible days, but there are still quite a few relatively “good” days sprinkled throughout. I was diagnosed with Fibromyalgia on February 12, 2013 – another chronic, crippling, pain disease. But it’s not all bad…. I‘ve met a ton of people all over the world that also fight RSD and Fibromyalgia – we’ve created a sort of global community for support and friendship. I’m excited to share my life with you, and hope you enjoy my writing. Head on over to my website atwww.lifeofaspoonie.weebly.com and check out my blog!

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How I Learned to Advocate for My Pain: Guest Blog

I’ve been involved with my local children’s hospital since about 1 year after I was diagnosed with Crohn’s disease at age 12. I got a special position as a member of the Youth Advisory Council. When I kind of aged out, I became a Young Adult Supporter (YAS)

(I have a secret theory that this position didn’t exist before my co-YAS and I aged up and it was a way for the hospital to keep us around)

But this was how I met Chronic Chronicles. Chronic Chronicles actually attended the same high school as me, but was a few years younger. We never connected until we met through the hospital. Chronic Chronicles’ experiences astounded me, I mean, no one knows what the EXACT cause of Crohn’s disease, but we have SO much more of an idea than chronic pain. It broke my heart when a plausible explanation of her pain arose then when proven wrong. The disappointment must be unbearable.

But we developed a great and supportive friendship and I owe a lot to Chronic Chronicles. I was diagnosed with Crohn’s disease 7 years before my friendship with Chronic Chronicles, which means 7 years until I had any sort of pain management. I told her my woes of endless hours of pain and the dismissive attitudes towards any inquiries into pain medication I had made. Chronic Chronicles gave me the BEST advice I have ever gotten about advocating for myself in terms of my pain.

I followed her careful instruction of keeping a pain diary for a week before my next appointment, detailing the scale of the pain, duration, trigger, and what I wasn’t able to do because of it. She told me to put my foot down, and not leave the appointment without a prescription and a plan.Like a good patient, I followed the orders and despite a little resistance from my doctors I was prescribed a pain medication that changed my life.The pain management has enabled me to do routine things like shopping, walking to and from work, staying attentive in class, sleeping or sometimes just sitting up.

The point is that I was at a loss of how to advocate for myself. I have made a name for myself as an advocate for youth patients (on a national scale, big deal, I know) but I didn’t know how to stand up for myself in an area I had no experience in.

Rather than relying on someone who was a medical professional or a specialist, my peer provided the best support I could ask for.

I owe Chronic Chronicles a lot and we’re celebrating my Crohniversary and her Painiversary together because that’s what friends do!

How to Survive the Hospital Guest Blog: Guest Blog

How to Survive the Hospital!  

I want to talk about having to be admitted into the hospital. If you have a chronic illness, at one point or another you will be admitted into the hospital. I have been admitted numerous times to three different hospitals. Each stay in the hospital was a horrible experience. I started taking notes on what could’ve made my stay better. I compiled a list of tips and tricks that make my stay a lot simpler. I wanted to share with you those tips to help you out with your future stays!

What to pack for the hospital.

Firstly, packing for the hospital! What do you pack? It ultimately depends on how long you are staying. I pack for an estimated three days. If my stay is extended, I already have an extra bag packed back at my house. I went through trial and error, until I perfected my packing list. This list includes all of the basics you will need. I made sure not to include any unnecessary items. I have three bags that have all my necessities for my hospital stays.

Clothing: to save space while packing, roll your clothes.

  • Three button down tops. I prefer button down because, they are easy to take on and off. Especially if you have tests on your head or chest. I normally wear cardigans because of my low body temperature, and cardigans are soft and comfortable.
  • Three athletic shorts. When you’re in the hospital you don’t want to dress up, but you also don’t want to stay in your pajamas all day. I find athletic shorts to be the perfect clothing item. They are very comfortable, and don’t look gross.
  • Two sport bras. Wearing regular bras while in the hospital is uncomfortable, especially if you have to sleep in them. Sport bras are very comfortable to wear and sleep in. Most sport bras also provide very nice support.
  • One cami. This is optional. I wear camis with everything. During hospital stays I wear sport camis. I find them much more comfortable and fashionable than regular camis.
  • Scarves. This is another optional item. I have very low body temperature, so I wear scarves often. I also feel more put together when I wear a scarf while in the hospital.
  • Socks. The hospital should provide you with some footies, but I like having my own socks as well. I pack two pairs for each day I am in the hospital.
  • Underwear. I pack two pairs of underwear for each day I will be in the hospital. It is important to pack more underwear than you think you will need.
  • Pajamas. I pack three pajama shirts and pajama bottoms.

Toiletries: Most hospitals have toiletries that you can ask for. My local hospital has very nice quality toiletries. Sometimes I prefer theirs’ over mine. Also pack toiletries in travel size as a space saver.

  • Hairbrush. Travel size. Some tests may restrict you from being able to do anything to your hair.
  • Tooth brush. Yet again I use a travel size tooth brush.
  • Tooth paste. Yet again travel size.
  • Deodorant. I love the mini Dove Go Fresh.
  • Shampoo and Conditioner. These are also travel sized. If I run out I ask the hospital if they have any.
  • Soap. Most hospitals will supply soap as well.
  • Razor. I like to use my own razor.
  • Dry shampoo. If you don’t pack any other hygiene item, pack this! Sometimes if you’re a fall risk you will not be permitted to use a shower. Dry shampoo allows your hair to remain clean without water. I like the Suave brand.
  • Lotion. I noticed hospital sheets can irritate skin very easily, so make sure you remain moisturized!
  • Glasses, contacts, and contact solution! I always forget these items.
  • Make-up. If you chose to wear makeup, pack light and only the essentials. I pack foundation, blush, natural color eye shadow, and mascara. I also pack face wash, blotting wipes, and make up remover. Don’t forget about brushes and applicators if you pack makeup!
  • Chapstick. Another essential.
  • Some smaller items I pack are tic tacs, tide stick, roll on perfume, and hand sanitizer.

I am able to fit all of the bigger items (shampoo, conditioner, dry shampoo, hair brush) in the purple flowery makeup case. The rest of the items fit into the two front pockets of my book bag!

Entertainment and Comfort: These are my personal items I take along that entertain me and also provide comfort.

  • Stuffed animals or blankets. I have two stuffed animals that I take along with me, as well as my baby blanket and a shawl made by members of my church.
  • Pillows. Hospital pillows are horrible. I like the comfort of my own pillow.
  • Blankets. If you have a comfortable, warm blanket that you like, bring it with you! Hospital blankets are very itchy and thin.
  • Laptop or tablet. My laptop provides the most entertainment to me while I am in the hospital. Tablets work just as well and are easier to pack. Don’t forget chargers!
  • Blogging stuff. I take my blogging notebook and folder so I can plan upcoming posts. Even though you’re in the hospital you can still be productive!
  • Magazines. I am a magazine hoarder. I make sure to take the latest issues with me. They are very easy to pack and hardly take up any room.
  • A book. Don’t take many books. Choose one book that you are reading or plan on reading.
  • My comfort box! I have a comfort box which holds a lot of items that make me feel better when I am having a sick day. This is a must have for going to the hospital! (See Kelley Fricke’s tutorial on making a comfort boxhttp://www.youtube.com/watch?v=c_AJl9Q9hKM ) My comfort box includes a coloring book, coloring crayons, my favorite movies, Sudoku, word search puzzles, riddle books, my favorite cd, nail polish, cards from family and friends, and sharpies to decorate throw up buckets.
  • Some other good entertainment items include card games, sketch pads, crocething or knitting items, classwork, handheld video games, and small arts and crafts items.

My comfort box and its contents.

I put most of my entertainment items in my book bag as well as my toiletries. My laptop and stuffed bear go inside of my pillow case. My comfort box has its own nifty bag.

These three bags are all I need while in the hospital. The pink bag has my clothing, the pink and white bag has my comfort box, the brown book bag has my hygiene, entertainment, and comfort items, and my pillow case has my pillow, laptop, and stuffed bear!

What to expect while you are in the hospital.

o   While you are in the hospital, you will either be having tests run on you, getting procedures done, or both! Most tests and procedures are uncomfortable. I like having my mom with me anytime I get a test or procedure done, you may want a person who will comfort you be with you as well.

o   Prepare for nurses to check on you every hour, including the night. It’s practically impossible get a full night’s sleep while in the hospital. Don’t set your alarm! You will be woken up many times by the nurses throughout the night. It may be good to schedule a time during the day that you will be able to take a nap.

o   The hospital is very boring. Try and keep yourself busy. I normally make a list of things I would like to get accomplished that day. Some hospitals have “play rooms.” These rooms have games, books, coloring stations, etc. It is mainly for little kids, but I have found some teenage friendly items as well. Some hospitals also have gaming consoles in the patients rooms. Most hospitals also have DVD players, and you can request movies. Don’t be afraid to ask what entertainment options that hospital offers! You may be surprised!

o   Invite family and friends to come and see you. (You also may want privacy and have no family or friends come and see you, if so make sure you tell them in advance!) Ask them to bring games, food, or anything that would be fun! I always beg my friends to bring me food. Hospital food is not the best. A lot of people bring gifts, so make sure you have an extra bag for gifts. If you know a friend or family member is wanting to get you a gift, tell them something specifically that would help you out during your hospital stay. Here are some examples of items.

Altoids, magazines, fuzzy socks, dry shampoo, chocolate, face wipes, chapstick, lotion, and some snack bars.

o   Bring snacks! As I said, hospital is not cooked by a professional chef. I always bring a bag of snacks and drinks with me. These include almonds, fruit snacks, chips, chocolate, crackers, and small breakfast items. I would not recommend bringing refrigerated items, unless you know your room or the nurse’s station has a mini fridge. Some hospitals have restaurants and cafes inside of them. So you may want to bring a small amount of cash and ask your nurse to run and get you something. You may be put on a diet change during your stay, so ask your doctors beforehand if you can bring snack and drinks.

o   Don’t forget about your medication! When you are packing, make sure you have all of your current medications that you take. You also should write a list of your medications, dosage, and how many times a day you take them. That list should be given to your nurse or doctor. Some tests and procedures won’t allow you to take your medicine. Talk to your doctor about this beforehand.

o   Avoid social media. One thing I noticed while being in the hospital is talking about your stay in the hospital on social media sites can cause a lot unwanted drama and attention. Also you may be put on some medications that can make you loopy. This happened once, and I started tweeting the weirdest things. By the time I got home and checked my twitter, I had tweeted things I didn’t even remember tweeting!

o   If a parent is staying with you, make sure there is a spot for them to sleep. Most hospitals have a parents lounge, or can roll in a bed for your parent to sleep on. Some suites also have pull out beds. They will be as bored as you are, so bring items you two can work on together.

o   Expect to see a lot of doctors! You will see many different doctors whom are on call. Most of them won’t be in the happiest mood, since they are on call. It is important to try and remember their names. Keep a notepad by you to write down any information they give you. This will come in handy! Also keep track of what tests you have done, and what medicines they gave you during your stay.

o   Be nice to your nurses! Don’t be rude to your nurses. They are there to help you. Sometimes late night nurses can be grumpy, so try not to provoke them. Don’t be afraid to ask your nurse to help you with something, or get you something. I used to be terrified of asking my nurses for water or helping me go to the bathroom. That is just another part of their job! A nice gesture to your nurse is providing a small gift. Here are a few ideas I found from pinterest!

Leaving the hospital!

                   Yay! You get to leave! That either means that your procedure is over, or the hospital has read the test results and figured out a plan for the future. It can also mean that the hospital can’t help you anymore and has no idea where to go. I have dealt with all three of these outcomes.

Once you get home, relax. Don’t immediately start unpacking or clean. You have been through a lot and need to take a minute to sit down and relax. After an hour or so start putting things away and get back to your regular schedule.

Now is the time to get on social media and give a health update, but before you do that make sure you update your family. You may include why you were admitted, what tests/procedures you had done, and what the plan is for the future. Avoid talking about bad nurses/doctors, bodily fluids, and the screaming patient the hall down from you.

You will most likely have an upcoming doctor appointment. Start preparing for that. Write down existing symptoms as well as any new symptoms. Your doctor may want you to do more tests and may even put you back into the hospital. If you suspect this is going to happen, back a few bags before the appointment. This way, you will be prepared for the worst!

I hope these tips help you during your next hospital stay! What items do you like to bring with you to the hospital? What entertains you while you’re in the hospital? Do you have any tips as well? Don’t be afraid to comment! Also check out my blog www.thatonesickkid.wordpress.com It launches Monday, July 22, 2013!

 

 

Angela Richie:Hello everyone! I am Angela Richie and I am the admin of www.thatonesickkid.wordpress.com I have POTS, which is a form of dysautonomia. I have had POTS for two years and have developed other illnesses along the way including pseudo seizures and gastroparesis. I am very excited to be guest posting on Chronic Chronicles!

I believe: Guest Blog (Amanda)

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“I believe – I – I believe in the good. I believe that it’s been a hell of a year,

& I believe that in the face of overwhelming evidence to the contrary, we’ll all be okay.

I believe a lot of things…”

I believe in dreaming.

I believe in bucket lists.

I believe in Talia’s bucket list.

I believe that the life and subsequent death of a 13-year-old girl I’ve never met has significantly impacted me more than I could have ever imagined.

I believe in high school friendships.

I believe in long distance friendships.

I believe that Skype and FaceTime are two of the greatest things ever invented.

I believe that friendships can end and still begin again.

I believe that we can be who we are, while remembering who we were, and reaching for who we want to be.

I believe that time can stand still.

I believe that it can feel impossible to start again.

I believe that starting again is the only way we can survive.

I believe that grief looks different on everybody. There is no shape and size. No timeline. No owners manual.

I believe that people who are grieving need different things at different times. I believe they find ways to tell us, but only if we’re really listening.

I believe that when I look back at 2012 and see noting but a blur, my life actually did stop when I was admitted to the hospital in March, and then somehow I looked up and it was December.

I believe that searching for something important takes a level of warning and preparedness you don’t always recognize – for what you find might not be what you ever expected.

I believe you have to come to peace with what you find, or it will consume you.

I believe that it’s okay to accept something, to come to terms with it, but to still have feelings towards it or about it afterwards.

I believe that I would give up nearly anything for my story to be different, but on the flip side, my story has created a whole different me than the one I was planning to be. One that has compassion and empathy and patience (sometimes).

I believe that this has changed me in my core, but sometimes I still feel the girl I used to know inside.

I believe that I have a purpose, and that purpose is somehow deeply tied to writing, and connecting with others.

I believe there are people that make small and large differences in our lives each day, and I believe that we don’t say thank you enough. We don’t say I love you enough.

I believe in inclusion.

I believe in love.

I believe that with love, nearly anything is possible.

I believe the people we have loved and lost look down on us every day.

& finally…

I believe that believing we survive is what makes us survive.

-Grey’s Anatomy

Amanda Kasper: is a writer, reader, quote lover, CASA Advocate, and non-profit believer, seeking space as a lifelong learner, passionate lover, and irreplaceable friend. Despite years of facing chronic pain and illness, Amanda just completed her Master’s Degree in Public Health, and is planning to combine her personal experiences with her advanced education by becoming a patient advocate – enabling each individual a voice and a navigator in the healthcare world. Amanda tweets at @AKasper513 and blogs over at Below The Radar.

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