Hello everyone! I know it’s been a long time but it’s been a crazy summer! I went to the beach and to church camp. Then I went on a mission trip ! Had a fundraiser for my service dog! Now I’m just trying to get ready for school! Once I get into school and get more of a schedule to my life I’m going to be writing more! Hopefully once everyweek or once every other week! Thank you for being patient!🧡

What should my next post be about!? 1.Traveling with a chronic illness?

2. Church camp and chronic illness?

3. How I’m preparing for school with a chronic illness?

4. A 2 part series about mental health (depression and anxiety) and chronic illness?

Please comment what number you would like for me to write! Please comment any questions! Thank you!🧡

8 Things about living with CRPS I want you to know.

1. I’m trying my best.

I try to make the most out of everyday. I try to do things I used to do or things I haven’t done. I always work as hard as I can with the circumstances I’ve been given. Please remember even if you think I’m not doing enough, I’m trying my best to live my life and work hard at everything I do.

2. I may not look sick, but I am.

I know from the outside I look like another normal 16 year old girl. I do things all teenagers do and I always try and smile. On the inside I’m in complete pain. It feels like my body is on fire and it hurts to move. I’m always in pain. It doesn’t stop hurting. So, even if you think I’m not sick becuase you cant see it, understand this is a very real illness.

3. There is no cure.

I won’t wake up one day and my illness just magically disappear. CRPS is a chronic illness. There is no cure to make it go away. There are different treatment options like physical therapy, nerve blocks, injections, ect. None of those things will make it go away forever. They might make it easier to tolerate the pain.

4. If I had a choice I would never miss anything or cancel plans.

I love to hangout with my friends and my family. Somedays I wake up and cant move, or i cant walk becuase of pain. I dont know what is going to happen with my body everyday. So if I ever cancel plans its not becuase i just didn’t want to go. I cancel becuase I physically can’t do it.

5. It is more than just physical pain.

Chronic Illness is more than just the physical pain. With CRPS and other illnesses comes anxiety and depression. I know first hand what having depression and anxiety feels like. I have panic attacks just thinking about people bumping into me or touching me. Its constant. I may not always be in a happy mood. Depression is very real especially when you’re kind of alone and are always in constant pain. So please be patient.

6. Every single day is different.

Every single say when I wake up is different. I could wake up and not be able to move or my leg could be numb etc. Something I did yesterday I might not be able to do today. It is very frustrating but I deal with it. So if you see me walking good one day and then the next I’m using my cane or wheelchair I’m not faking. My body is just weak and I need extra assistance.

7. I know it’s hard for my friends and family to see me like this.

I know this is hard for everyone I’m close with. I know it hurts them to see me in pain or see my when I’m upset becuase I can’t do anything. It breaks my heart to see them sad but I know it’s becuase they love me . I love them so much, I will be forever grateful to everything they’ve done for me.

8. Never be afraid to ask questions.

If you don’t understand something or are curious about something involving CRPS please ask!!! I love to educate people about my illness that’s one of the reasons I started this blog. I want people to understand and have the correct information. So please comment or message me if you ever want to know something!🧡

Thank you so much for reading my blog! Please comment and share!🧡🧡

5 things I appreciate more because of chronic illness(CRPS).🧡

1. My sense of touch.

I used to be able to give hugs all day and smile and feel no pain. I could be under my cozy blanket and wear my heavy sweatshirt. Now on my good days I can only give a few hugs and now certain fabrics make my skin feel like it’s burning off. On my bad days I can’t let anyone touch me or it would feel like my bones were breaking. So everyday I can give at least one hug, is a good day and I’m thankful for that hug.

2. Walking.

I didn’t ever truly appreciate walking until I couldn’t walk anymore. Any day at any moment my ability to walk could be taken away from me since I have paralysis as a sitifect of CRPS. Some days I feel like I’m walking on glass and other days I need a cane/walker/wheelchair to help me around. On the days I can make it from my bed to the couch without crying or falling is a good day.

3. Friends and family.

I appreciate my friends and family so much more than I did before I got sick. They give me so much support and love it’s unreal!! Even though I can be rude or bratty or unpleasant to be around they are always there! They are my rock. I don’t know where I’d be without them believing in me. Everything they do amazes me!

4.Self care.

Before CRPS I didnt know how much self care could mean. Before I’d get up and get ready all by myself with no care in the world. Now it can take all the energy I have just to put on deodorant by myself. My mom has to help me some days get dressed and pull my hair up. So every small thing I do for myself , like putting my hair up, is a small accomplishment!

5. The little things.

The little things are so important with a chronic illness!! I appreciate so many things now in my life. I appreciate being able to sit up and stand without any help. I appreciate music and T.V. for being my escape from reality! I appreciate my bed and being able to have time of rest ! I appreciate my friends and families laughter and smiles becuase for a while ot wasn’t there! I appreciate every single time I feel good enough to leave my house to see flowers and sunsets! The list could go on and on. The little things matter !

hank you so much for reading my blog! Please, if you have any questions just leave a comment down below! You can follow my journey on PhoebesLifewithCRPS on Facebook!!🧡🧡

A small look into my day with CRPS!🧡

Hello! First I would like to thank everyone who came out to my first fundraiser this past Saturday! You helped me reach my first small goal, I could not have done it without all your support! I’m very grateful to you all!

Yesterday was a rough day for me. I woke up and my body was burning and my leg was throbbing. It took me 10 minutes just to sit up in my bed. I got frustrated after trying for five minutes. I just didn’t feel like doing anything.

Once I was finally able to get up and walk, I started my day. That’s what happenes when you have a chronic illness. You try and live a “normal” life and do what you have to do. So I did my school work, which took forever becuase typing when your hands feel like they are on fire is no fun. Then I did my chores and tried to not focus on the pain.

It’s very hard to go through everyday and act like I feel perfectly okay. Especially when I feel like I’m dying. I try and stay positive but, it gets more difficult every day. Even though it was a bad pain day, it turned into a good day overall!!!

It was my last day of physical therapy till the next time I go back to the doctor here in a few weeks. I can walk with my cane and use my wheelchair for long distance or when I’m going to be on my feet for a long time. So I’ve gained almost all my strength back since my episode of paralysis! I’ve worked my butt of for the past 4 months and it payed off!

When I got home I felt worse and just layed in bed, thinking about my future. I think about it a lot. With a chronic illness like mine I have no idea what it will be like tomrrow, let alone in 2 years when I graduate. I do know, regardless of what happens, I’ll do whatever it takes to make my future a good one!

Than you for all the support, thoughts, and prayers! If you have any questions about CRPS or AMPS please leave a comment down below!🧡

CRPS and life update!!

Hello,once again it is been a little while since I have been on here just a lot has been happening. Last time I posted on here it was the end of January and I was full-time in a wheelchair due to an episode of paralysis. Luckily now towards the end of April, I’m only part-time in the wheelchair for really long distances and the rest of the time I do require help from a walker and or cane. It has been a journey very hard one to get past. I’m still not in school and I’m not going back to school this year to focus on my recovery but I’m looking up towards great things hopefully coming in the next few months.

Back in December I was notified that I had been put on a waiting list for Mobility service dog! This dog will help me do daily tasks like get dressed , help me walk, open and close doors/cabinets, and grab things if I can’t move because of the pain. This is a very long and expensive process. The waiting list is 2 to 4 years to receive a dog. To help with this process in the next few months I will be having various different fundraisers to help pay for the cost of the dog, the dogs training, the stuff I have to get for the dog before it gets to come home with me, and the cost of traveling back and forth.

So I would greatly appreciate all of your support and prayers during this process. If you would like to keep along with my story other than on my blog there’s a Facebook page just search #PhoebeJourney and the post should pop up and you can join the group.

I created this blog and the Facebook page to help educate people on CRPS and AMPS and the struggles of having an invisible chronic illness. I am one of the very few children who get diagnosed with this disease. I want to bring awareness to it because people don’t think it’s real, the thing it’s in our heads it’s not. It is a physical pain that I feel constantly every day of my life 24/7. There is not a normal day. For me some days I can’t walk, some days I can’t move, some days my leg goes numb and I can stop it. I just want people to try and understand.

I’m so grateful for anyone who took the time to read this and wants to educate themselves. I greatly appreciate anyone who wants to follow my story because it’s not just my story. There’s other people out there who have this who don’t know they have it, think there going crazy becuase becuase people say it’s in there heads, and go through this everyday. Everyone’s story s different so I hope you can learn from mine. I’m grateful I get to have a voice for other people and spread awareness for CRPS.

If you have any questions please comment down below ! Thank you.

It’s been a while …. Life update!!!

Hello! I know its been a long time since I’ve been on here but I have good reasons. The last time I talked to you guys was about 4 months ago, a lot has happened in four months. Life has been amazing, wonderful, hard, overwhelming, but it’s also been a learning experience.

So let’s just start around the end of November. As you know I am a 16 year old girl and I have a nerve disorder called CRPS ( Complex Regional Pain Syndrome). It is also now known as the “suicide disease” because it is the most painful disease known to humans. I have it from my hip down to my toes on my right side. It’s like my leg is being crushed by a truck and my body is on fire most of the time .

But, in Novemeber my leg started to feel weaker and go numb more than it usually does. I kept feeling like something was off. This disease caused me to get paralysis from hip down on my right side. I tried not to focus on my leg but then on Decmber 18th, 2018 I had my second episode of paralysis.

I was at school and then I couldn’t feel or move my leg from the hip down. I was scared but I knew it was coming because of symptoms I’d had in the past. I couldn’t walk. my leg was just dead weight on me causing me more pain.

I went to the doctor, and I was told there was nothing they could do to help me again. I was upset and then I had to be put in a wheelchair because I had no functioning. I spent every moment of my life trying so hard to not have to be put in a chair but it happened. I was devastated but I understood they couldn’t do anything.

We didn’t know when or if I would ever be able to move or feel my leg again and, it was heartbreaking. To have to come to terms that there was a chance I would never be able to walk again took strength I didn’t have. But with my family and friends and church family they gave me the strength and hope I had lost back. So now about a month and a half later and a lot of prayers I’m getting better.

I am still in a wheelchair but I can now feel and move my leg from the knee up. It is tremendous progress that has taken a lot of work. I’m so grateful that I’m getting better. I’m not in public school right now so I can focus on my recovery. So hopefully, God willing, in the next few months I will be back on my feet walking!

I’ve learned so much over the past few weeks. I was upset at first but now I’m happy this happened. Its taught me to appreciate everything. Even things that don’t seem like a big deal, and never take them for granted!

Thank you for all the prayers! I love all of you ! If you have any questions please leave a comment !!

The way people react when I tell them I have a chronic illness!

Everyone reacts different when I tell them I have a chronic illness. Normally I notice the two main ways people react. The reactions can be very diverse depending on the personality of the person I am telling.

First you have the people who are interested and want to learn more about what CRPS is. I personally love the people who are fascinated and curious. I love to answer questions and teach people to help them understand what I have is real. I am one of the few people who live with this every day. When I get to talk to these people it brings me so much joy. People think I’m always miserable, but I’m not. So please if you have questions, comments them down below or ask me at church or school.

The second way people normally react is the opposite. People will look at me like I’m crazy because they don’t believe in this chronic disease because they can’t see it them self. When I meet people like this, yes, it is very frustrating but it’s just something else that comes with having an invisible disease. I try to inform these people, but you can’t talk to people who don’t want to listen. If you aren’t fascinated or don’t believe in what I have that’s okay, but you should be respectful and say you don’t want to listen instead of how people just say I’m lying, a faker, want attention, etc. When most people say it’s not real because they can’t see it I normally ask, “Do you believe in God?”. I say this because when they say yes, they believe I tell them, “You can’t see God, so how do believe in him?” they get aggravated when I ask this and say that because they can’t tell me real logical explanation on why they don’t believe in CRPS other than they can’t see it.

I am a Christian and I believe God has this big plan for everyone even if we don’t know what it is or why he wants things this way. God has been the biggest factor in me getting sick. To be honest I was mad at God for making me go through this by myself with no one around me who understands, but now I’m so blessed that he gave me this and I know that he is always here walking my path that he has created with me all the way. Now I get to share and inform other people. This is real, regardless if you believe in it or not. I thank God I get to share this with you.

Please if you have any questions, comment down below! I will answer your questions.

CRPS on the first day of sophomore year!

     Today was my first day of sophomore year in high school ! Even though it is a very big struggle I do go to public school. When I woke up this morning I was excited but I was in complete pain. My leg was tingling, and it was just overall hard to move because it felt like pins and needles all over my body.

      I got up , eventually, and got ready just like any other normal teenager. Once my family and I were in the car I started getting stressed and anxious about seeing everyone again. I  have numbness and paralysis in my right hip down to my toes so I use a cane to help me walk. I prayed to God for the strength to get me  through today and give me peace. He answered my prayer.

   I know it might not seem like it, but it’s very overwhelming to go to highschool with a cane especially because, 1. I physically dont look like I need it, and 2. I know people are going to talk because I look healthy.

    I had multiple people give me weird and nasty looks just because they are uninformed. I had people tell me ” you just want attention, you really don’t need help walking.” I try and ignore them because I know what they say isn’t true , but sometimes it still hurts.

    Sometimes its hard because people want to hug me and talk while standing. Somdays I’m in so much pain I can’t be touched, my light weight clothes hurt my body. On the McGill Pain Index CRPS is ranked more painful then childbirth. People just dont understand.

  As the day went on my pain got worse but I stuck through it, and made it till the end of the day. I want people to understand I am a normal kid. Some things , like school, is just a hard challenge. But it wont stop me.

My first blog !!

     Hello! My name is Phoebe Phelps and I am 15 years old. > I’m from a small town called Ceredo, West Virginia. This blog will be about my life living with CRPS as a teenager! This post is to inform you about my disease! The next will be about I live with it in everyday life.

     Complex regional pain syndrome (CRPS) is a really rare chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area (www.ninds.nih.gov).

    It is prolonged severe pain that may be constant.  It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb. These are some symptoms of CRPS:

  • changes in skin texture on the affected area; it may appear shiny and thin
  • abnormal sweating pattern in the affected area or surrounding areas
  • changes in nail and hair growth patterns
  • stiffness in affected joints
  • problems coordinating muscle movement, with decreased ability to move the affected body part
  • abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.

I got that list of symptoms from http://www.ninds.nih.gov

This blog is to help inform people and help them understand! Sorry for the short entry but I will be posting again soon!