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really long post about nothing so be prepared

Nov 29, 2015 4:12 PM

I'm sitting here, staring at the walls, just wondering if this is going to be my life forever. Its been close to a month or so that I've been in the hospital, and it just gets you thinking. I usually am positive and try to be as uplifting as possible, especially when my sister is visiting me in the hospital. But it just seems to be getting harder and harder to be happy. I feel like my life is being sucked away from me from all of the tubes and things stuck inside of me. Its kind of the opposite of what they are suppose to be doing right? Medicines are suppose to bring life back into you, but it seems they are pulling the life from me.
I feel like this has already been my whole life so far, I mean I can't even remember anything really before age 10, and I became "ill"(is that the right term) when I was 11. All my memories has been me being like this, so why would that change for the future.
I know I've probably mentioned it before, but I feel like it is my fault that I have CRPS.
I was in 4th or 5th grade, I was more into being alone and braiding string to make bracelets(a very popular thing at the time haha) than playing with my friends at recess. But one day, I decided I would go play on the monkey bars...I fell. It can't be my fault, how would I know that would happen, but it somehow feels as if it is my fault. My mother was called to the school, I went to the ER, a few xrays later, they say I broke my ankle. I was upset but excited to have everyone sign my cast.
A few weeks later, I was getting my cast off, after they fully took it off they notice my big toe on my right foot was swollen and literally blue. So I got sent to another doctor. And soon after I was diagnosed with CRPS. It was actually right around this time...
I spent Christmas on crutches and in agonizing pain. After being sent to a bunch of programs to help, it finally got better, but they realized that my Dr in the ER messed up I guess you could say.
I never broke my ankle. I sprained it. He thought it was broken because I have a strange crack in my growth plate which is apparently okay. So yeah, I wore a cast for weeks from a sprained ankle and I feel like its my fault that I have this. I am the one who fell. If I didn't fall I wouldn't have been put into a cast that caused more damage than anything.
I'm sorry for ranting, and being for the most part being really negative, this isnt even really a rant, more like thought pouring out, so I feel like it won't make much since.

I am on some really strong pain killer and I get it like every 4 hours, so mg Brain is very mushy, I hope you understand. I just needed to pour my thoughts out, in hopes it would help me to stop crying. I appreciate you all for letting me complain so much lately, this really isn't like me, but I'm grateful I found some where I can do this. Considering this is the worst I have ever been.
Okay I'm done now I promise.
Sorry for this horribly long post.

Nov 29, 2015 4:20 PM

I have to admit I scanned through your post. But what I read felt as if you were looking at my life and writing about it. I understand I've been having g issues for years. But my life changed for the worse once I got pneumonia then got it again the next week and was hospitalized. It's been one Dr one shot one pain. Complaint after another life getting g worse and worse lossing my home lossing friends losso g lossing. So I to wonder if there is any point to live like this. I honestly am still struggling with this. But I do know that I have to continue. I don't want to but I still have hope so I ask you to also. We love you here we need you. It's selfish but we ask you to hold on. Please

Nov 29, 2015 4:28 PM

I'm so glad someone can understand the feelings that I'm having right now honestly. It makes me feel like I'm not going crazy. I am trying so hard to hold on. I have to.
Sometimes I'm glad I'm in the hospital though because I have had a past of self harm (sorry to bring it up I know its a sensitive thing for a lot of people) but I feel like I am safe, from myself that is. These types of illnesses just cause so much depression. And idk I'm just glad that someone understands

Nov 29, 2015 4:34 PM

Hi Jenna, sending you lots of sunshine from New Zealand 😊 I think of your injury as the randomness of life, you were a child and it was other people's responsibility to keep you safe and care for you.
You do not deserve what is happening to you. I hope solutions come your way soon that will make you more comfortable and start you on a healing journey back to the life you deserve to thrive in. In the meantime, I thank you for sharing your story, your pain, your grief and wish you all the best xxx

Nov 29, 2015 4:39 PM

Oh Jenna, and baby girl, please let us help you to know that know matter how bad it is right now, it will get better. It is NOT YOUR FAULT that you have this. You were a kid and you were doing what all the other kids were doing, playing. It is that Dr's fault for rushing to a diagnosis of a broken ankle, not yours. You must understand that. Deep down, somewhere deep inside, you know it isn't your fault. You need to hang on to us and let us help you now. We can, with lots of love and support help you climb the ladder out of the hole you are in. You have my email and phone number. Use them sweetie. I'm right here and I'll do whatever I can to help you. πŸ’•πŸ’•πŸ’•πŸŽˆπŸŽˆπŸŽˆ

Nov 29, 2015 5:55 PM

Jenna, when I'm in the midst of feeling so alone and helpless, when I look at my life and think "is this all there is?" When I think that maybe it would be better not to be here, I do what you just did. I find somewhere safe and let it out, the people who love me tell me it will change, this moment in time won't last forever. They offer me a life preserver and I realize I do have control of at least one thing- I can choose to grab that preserver and hold tight or I can not. Every time I grab it, I realize later that they were right. Keep talking sweetie, we are listening; grab that preserver, and let others keep you afloat. You don't have to go it alone. I hope this makes sense, I'm a little foggy today myself

Nov 29, 2015 6:00 PM

Thank you so much iann <3 that really made me feel so much better. I'm getting some meds that will hopefully make me tired enough to fall asleep.
They just filled up that weird food tube thing so my stomach is feeling pretty strange. I am definitely looking forward for maybe an hour of sleep, my throat is looking ALOT better though, I'm even able to talk a little bit!! I'm really happy about that

Nov 29, 2015 6:12 PM

I would probably explode if I couldn't talkπŸ™ƒ!

Nov 29, 2015 6:14 PM

I basically was!! I am such a talkative person!! And having to write EVERYTHING I wanted to say drove me nuts. But now I'm aloud to talk to the Doctora but I have to try to use short sentences lol

Nov 29, 2015 6:56 PM

Jenna, you aren't ranting at all, if anything you're Journaling what you went through letting your thoughts and feelings out. Did it help you to do that? Does it help to get some feed back and support from others who understand the chronic pain? If so, then there is no need to apologize. Know that everyone here is to support you.

Nov 29, 2015 7:50 PM

Hey Jenna,
Just a thought, I've felt like CRPS was my fault too, although I never really figured out the cause.

I feel like I might have caused it when I managed to get a sheet of glass dropped on my big toe at a friend's house but then never told anyone about it...

Nov 29, 2015 7:57 PM

I think I'm going to be getting transferred some where soon.
They haven't really "said" it but different hospital's have been brought up. I really don't think I could handle being transferred just because of the movement involved but I hope I do because I might get better.

Nov 29, 2015 8:10 PM

A change of environmen could be good.plus you may find the doctor you need to help u get back home . I'm really hoping that you find the professional that will get back to a balanced place in life. Blessings all coming your way little one.

Nov 29, 2015 8:34 PM

I have no words of wisdom. I wish I could answer why there is so much pain in the world..physical, emmotional, sexual abuse, verbal and so on.

I share this, my most painful life story, with you not to be sad but to remember to enjoy what you can and never stop fighting.

My dad was hit by a truck when I was little I think 3 or 4 (i am 46 now). The dr gave him any drugs he wanted including ones that should never have been taken together. The dr left the country and my dad in so much pain turned to drinking and drugs trying to escape the pain. That would catch up with him 20 years later when the drs figured out he had hep C. I don't remember him ever being not in pain I am sure he had fibro and other undiagnosed pain issues. Even with all the pain I watched him fight for his life and fight against the hep C. I watched him exhaust himself to go do something he wanted, that he enjoyed. One of the most miserable ways to die for sure is Hep C and he had 8 years of serious illiness. I can not begin to describe the hell on earth my dad, my hero lived. During his battle he begged God for life and I begged God to take him home and relieve his pain once and for all. My dad was my only family member who cared about me. March 16, 2005 I lost my dad and he fought to the end.

So when I am at my lowest I remember my dad, his strength and will to live no matter how sick or in pain he was. I wonder sometimes how or why and then I see the lives he touched. Not just family or friends but even at his sickest when Hep C held a terrible stigma he joined groups and tried to help others. He stood tall and told people the honest cold hard truth...not that he had a blood transfusion like so many people said then... but the honest truth that sharing a needle one night with a friend was the beginning of the end. He didn't have to tell the whole story but to him there was one person who might hear and learn from him. That one person might hear what helped you live longer with hep C as at that time there was no information on anything that would help.

Jenna what do you think you are doing? You are sharing your story to help yourself and others. By sharing you can, will and probably have helped others with similar diagnosis as you.

You did not bring anything on yourself. You did not ask for this.

Anyone can walk through life happy and health but for those of us who don't...we are the ones who learn to appreciate life.

Sending you well wishes, light hugs but most of all prayers for strength, understanding, peace and acceptance of your situation.

Nov 30, 2015 6:58 AM

Hey Jenna. I'm so glad you know you are not alone and you have family here you can vent to. Sending you hugs and prayers.

Nov 30, 2015 7:39 AM

You have been through so very much lately. Through it all you have been positive and you have posted to help others even though you are in such horrible pain. You are an AMAZING young lady. I'm glad that you are part of the family. You do know that we are all behind you and praying for you on a daily basis. I know it's difficult to stay positive and really, who would be "happy" in the position that you are in. You know, I've blamed myself many times for my situation. If I hadn't done this or that I wouldn't be like this. Well, that is not necessarily true. One never knows what the world holds for us. Only God does. You have gone through "treatment" and haven't had relief and you are stuck to a hospital bed with IV's and tubes, etc. it has to be distressing. You ARE strong!! You are alive and your Mom and Sister love you. Don't waste your energy trying to put on a happy face, they know you're feeling badly. It takes too much of your energy. Take each moment as it comes and if you feel like you can smile and be in an uplifted mood, then you go that direction. This was not a long post about nothing, it was a long post about you and your thoughts and fears. That is NEVER nothing. I wish that I could be bedside from time to time to give you some strength and some peace of mind but I have to settle for sending you words of love and encouragement from here. They will figure this out and you will go home. Things may not change for you as far as living with this disease but you never know when someone will come along with a way to make it better. There's always hope for something to come along. Hang in there Sweetie.. You've got what it takes and you have all of us behind you no matter what. Sending You love, gentle {{{Hugs}}} and prayers.πŸ’•πŸ™πŸ»πŸŒ»

Nov 30, 2015 7:58 AM

alwayz, you always seem to know what to say <3 you just brought my mood up honestly, I just woke up a bit ago its around 9 am now, and guess what I got almost 4 hours of sleep!!! It was on and off but I am so happy about it, its weird to feel somewhat "rested" with only 4 hours of sleep. Lol. But thank you so much <3

Nov 30, 2015 8:01 AM

I'm glad I was able to bring your mood up a bit. I wish there was more that I could do for you. I get it about being rested at 4 hours of sleep. I usually get 2-3 scattered so I'm always tired and if I get 4-5 straight it makes a big difference. I'm just a keystroke away Sweetie. I'm here whenever you need meπŸ’•πŸ˜Š

Nov 30, 2015 9:42 AM

AlwayZ, beautifully said! Jenna, she's given great advice and you are stronger than you think. We're here when you need us! πŸ™πŸŒΌ

Dec 01, 2015 1:19 PM

My surgery console thing has been moved to next Tuesday (December 8) to talk about doing an SCS or a pain pump, I am kind of hoping that they agree to do a pain pump first before the SCS bc that SCS thing scares me pretty badly

Dec 01, 2015 1:30 PM

Remember Jenna that it's YOUR body and you know it better than anyone else. Let them know that if that's what your options are then you prefer to go with the pump. Honey, I can understand why you're frightened of the SCS as its really a big deal. My hand is always here for you to hold, Jenna and my shoulders are always here to lean and cry on and my arms are always here to give you gentle and reassuring {{{Hugs}}} so you remember that you always have your pain family nearby. You hang in there, Sweetheart, you got this!! I know you do!πŸ’•πŸ™πŸ»πŸŒ»

Dec 01, 2015 1:34 PM

What always helped me when in the hospital, was to remember that you have a hospital to be in. 90% of the worlds population sleeps on a dirt floor. As bad as having those vampires hitting you for blood ever few hours, the pain of those crappy beds etc, We have options. The pain pump saved my life. Wonderful little thing.

Dec 01, 2015 1:45 PM

The doctors said its up to me. Which is why I'm going to see a surgery console person thing to discuss the both options I have. She seems really nice and knowlegable. Its just that at this point those are my only two options, if the pain pump doesn't work, then I need to try the SCS. And if that doesn't work the doctors provably don't even know what to do after that. I've gotten so many spinal shots that they said there's no point in trying those. My pain is at a constant 10(even though each day...sometimes every hour, my pain gets more intense and worse so its more like my pain level is at 100) and clwinbe, funny story. They keep trying to take my blood but every time they try my sensitivity is so bad that they can't even pentitrate skin with out my screaming. So I haven't gotten blood taken in a few days haha. Kind of a plus I suppose :p
Also, my strep is basically gone now, so I can talk more often I suppose, still hurts a bit. But im happy it'll be gone fully soon. I just still won't be able to go anywhere "unsanitary" for a while, apperently my immune system is turning to shit.
Sorry for language but thats what is happening

Dec 01, 2015 6:32 PM

Jenna, you do what you feel most comfortable. When you meet with the surgery consultant, have a list of questions or concerns written down. For instance, ask the long term benefits and risks of both procedures. Ask if patients required second or third procedures and if so why; what generally leads to a revision? Ask the success and failure rates. Ask if one or both will be something you will be less likely to need less or more medical oversight and care for. I've never had one but have had the simulator mentioned. These are questions I'd want answers to. Other who have these may have more or better questions. You are in my prayers and you've got all of us with you. You're never alone. Praying for God to give you guidance and peace on which way to go. (((Hugs))) πŸ™πŸŒΌ

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