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Im lifeless and weak.

Jan 24, 2016 4:46 PM

I have hardly been on here, let alone even going on my phone at all anymore. I have no energy ever, things are getting much worse, medically and mentally...again. I haven't been able to catch up with everything Thats going on lately but I wish everyone the best. I probably won't be coming on much for awhile and of I do it'll probably only be a few minutes to read a few posts. I just don't have the energy. Doctors don't seem to know what's wrong or how to fix it But Im just continuously getting sicker and sicker day by day. I've post so much weight you can legit see my bones so clearly its disgusting. The feeding tube isn't doing much anymore either considering I can't hold it down anymore.

I'm at my breaking point. I need some opinions if you have any thought to what might be going with me please comment it. I just want to see if anyone can get any ideas because doctors are giving up. If you need any more details or symptoms please ask. I just need to know what's wrong with me. I'm scared and paniced that Im going to die...I know its irrational...but idk...sorry for none of this makes sense.
But anyways I love you all and I hope things are going good for you.

Jan 24, 2016 4:58 PM

I don't know right now what coukd be happening but I would ask that u nkt give up. We don't care if u can respond just log on to see how much we love you. I know its hard. I know ur hurting. I wish I could take ur pain away. But hope is a wonderful healer. If u believe u will get better if u believe u will get to a higher point then niw u will. It may take a while a long while . and I know u have ready been struggling so very long Jenna please dont let go of hope don't let go of ur support. Please.

Jan 24, 2016 5:13 PM

I dont want to give up...But at the same time I feel like i should..I'm never going to be fixed...I'm going to end up dying if they can't figure it out and I cant handle that..

Jan 24, 2016 5:14 PM

Jenna I am so sorry that you are going thru this. I know you must be scard, put your trust in God to bring you thru this because he can. There has to be something causing you not to be able to hold down food. Have your Dr's tried to find out what is going on with your stomach? Dear Heavenly Father thank you for all the Blessings you have given to all of us, we come her for our sister Jenna Dear Heavenly Father we ask that you lay your hands on her body and heal her give her Dr's the knowledge to find out what is happening to her. In your name we pray.Amen. Jenna don't give up we love you and we are behind you 100%. Prayers and hugs.

Jan 24, 2016 5:18 PM

They way it looks now it looks dark..but I know u feel it will be easier to just stop. I've though it too. Recently actually.. Every morning I wake up and my pain is still here and I think..why did I wake up.. I know it hard. But there is a way to get your life back u just have to hold on a little longer .. Soon you'll be holding food again. I know it.. If you give up then you will be leaving a huge hole here and in your family heart.. I know we don't feel your exact pain. But we do know how it feels to live this type of life. Have u spoken to your family about your fears and concerns?

Jan 24, 2016 6:13 PM

I'm once again lost with words. I just know that it is scary, to feel like you're dying, and losing weight and the docs can't do anything anymore. To me, fear makes perfect sense. I'm rioting for you, no matter what. Are there any things you do that distract, if only for a second. I use to sing because it was really the only thing I could still do.

Right now the only (idea) thought that is racing through my mind is "DMSO, DMSO, DMSO!"

I at least get where you're coming from, although you're in more extreme pain. I know it's hard. I know is painful, and there's no end in sight. If you're like me you probably feel guilty, like the only other options will lead your family to use their last penny, only to see you die.

Don't know if you're a Buffy person, but she's been kinda an inspiraron for me with quotes that apply to illness. "It's hard, it's painful, and it's everyday."

I can't say at all what the future holds...so sorry.

Jan 24, 2016 10:34 PM

Jenna, I am so very sorry that you are in this bleak situation. I can't imagine how frightened you must be. Know this, you were in the hospital for a VERY long time and had to endure the medically induced coma. I don't know why the doctors are unable to diagnose this problem. Aside for the CRPS/RSD, have you had IBS or anything like it?? This may not be anything.. I was wondering if the doctors have checked you for an intestinal parasitic infection. They are not the norm, but are more common than people think. Perhaps it's worth seeing an infectious disease doctor to find out. I don't know all they tested you for while in the coma, however that was done to allow your body to heal itself and get you better. I know you don't want to die, Jenna. Does your phone have a talk to text function this way you could post a bit more so we know what's happening to you? You have been through more than your share of crap in your young life and I find it very distressing. (I feel really bad for ALL the young folks that are part of this pain family. Just try to hold on. If you're having trouble doing that, hold onto me (or us) and will be many here that would love to hold you. Sending you great big {{{Hugs}}} and prayers thstgjxxxea

Jan 24, 2016 11:17 PM

Hi Jenna,

Im sorry about what you are going through. It is my wish for you rhat you can find more strength everyday and to find a little peace in your chaotic world right now. If you can listen to your favorite album or watch a good movie to get your mind off what your going through for an hour or so do it.

Nothing is worse then being in pain and feeling isolated and in complete void of joy and happiness.

I love you Jenna! Big hugs xoxoxo

Jan 25, 2016 5:11 AM

Jenna sweetie so sorry to hear you are going through such a bad time , sending you the biggest gentlest cyberhug . when you are able can you post a little more details as to what's happening at the moment maybe we can put our thinking caps on and offer suggestions as to ways of helping you a little . you mention you are on a feeding tube, is it a nasogastric tube or are you fed via a tube directly into your tummy?
I hope and pray you can gather strength and courage from the warriors on this site to help you through this testing time.
You need to try and believe this is not your life forever sweetie the docs will get there in helping you diagnosis wise I'm sure, I guarantee many of our warrior friends have been where you are now, I know I have, where you feel this is it this is my so called life and it bloomin well sucks and I don't want this anymore but please believe me this isn't your destined life you just gotta hang on in there til that breakthrough is made and they get you on the treatment that will give you your life back. I know it seems unbelievable hun but it will come with happier more purpose filled days ahead of you. As I say when you feel weak in body and mind draw strength from us until it passes (which it will) .
You are stronger than you think, just look at what you have got through thus far.
Remember after the dark comes the dawn, your dawn will come lovey.

Jan 25, 2016 8:05 AM

Just read all your comments so ima answers all questions in small sentences I'm using voice to text so its a bit easier
Newfibrogirl, I've talked to my mom and Dr's and they set me up for therapy my 11st appointment is next month.
And ferret I started reading about whags going on with you and girl, I'm so sorry if you want my number just ask I might be feel ing like crap but i bet you are too so I'm here for you. And guess what I ordered some dmso from amazon! Should be here in a week.
Alwayz, I have no IBS but there is definitely something wrong in my intestines
Thank you so much gabey you actually reminded me to listen to some music.and it helped me calm down a bit.
Cnan I have the tube directly to my stomach they tried the nose one and I kept puking and it would come up and it hurt so they did the stomach one
Thank you for your wonderful message. I always know I can rely on you guys to help me feel better emotionally and know that this is a safe place.
Sorry for this weird style comment I just wanted to reply to every one who commented.
Hugs back to every one

Jan 25, 2016 10:13 AM

Jenna, never, ever worry about how long or short your answers are. I'm glad you found the talk to text feature on your phone easier. As you can see, we all love you Sweetie and stand behind you as we do all of our family members. This IS a safe place and any time you need, you know we're here to help. {{{Hugs}}} πŸ’•πŸ™πŸ»πŸŒ»πŸ˜Š

Jan 25, 2016 11:27 AM

Hi Jenna, just wondered if your tube is possibly getting blocked. I don't know if you have someone in or maintain it yourself hun. Is it a PEG tube you have lovey? Or a different type? Xx

Jan 25, 2016 11:59 AM

Its not blocked I have a home health aid that takes care of it, and plus all this had been going on months before I got the tube so I font think its that. And honestly I can't even tell you all I know is its like a tube going into my stomach on the left side I can never remember the termns they tell ne

Jan 25, 2016 12:04 PM

Oh I'm sorry Jenna I didn't realise it was a pre tube issue. Xxx

Jan 25, 2016 1:56 PM

Jenna, I know that this maybe a long shot but have you herd of sickle cell anemia? I have a friend who has it and he cannot eat anything that has proteins in it as it makes him sick. I would see if you could get tested for that. It may help your vomiting provided. Praying for you and know that I do care, even if I am not on here responding much. Love to you and always praying for you and the pain family! πŸ˜˜πŸ’•πŸ™

Jan 25, 2016 3:53 PM

Jenna it hurts me to see you talk like this Im so sorry I just spent my day crying from pain and im sorry i have to be greatful because there is you you are a tough cookie and Not a quitter so I will man up its so hard when our bodys seem to be attacking itself i cant say I know youre pain it sounds so bad but you are in my heart ..my daughter just sent me a article about mind over matter its in our head blahh...makes me mad no one can understand

Jan 25, 2016 4:21 PM

Jenna have they made certain that they didn't peirce your intestines. I used to take care of a man that had a stomach tube, and when they replaced a old one that came out ,the Dr peirced his intestine. Tell your Mom to get some aluminum paste to put around on your skin to keep the juices that bubble up around the tube, to keep from eating your skin up. It takes lotion to get it off but your skin will be soft. I will be keeping you in my prayers and sending you lots of hugs.

Jan 25, 2016 6:43 PM

I'm speechless and feel so badly for you. I was complaining about how bad my pain has been and the fevers and other pre surgical issues are along with my sarcoid flare up. That all pales in comparison to what you are going through. You are in my prayers. Mayo Clinic is a good hospital with a fine reputation so I'm surprised they haven't been able to diagnose you. Have you tried to get a second opinion from the Cleveland Clinic, another excellent hospital system? They are also wonderful diagnosticians who practice aggressive medicine. They can do a second opinion with your records only, but they found two significant issues on my behalf that none of the doctors here found. I know I'm grasping at straws here, but I think it's worth it.

Jan 25, 2016 8:20 PM

Jenna, I'd love to have your phone number. My family just swished is, but I can probably find it. Do you Skype at all?

Jan 26, 2016 11:59 AM

Jenna, I'm so sorry you aren't feeling any better. ". I really wish I could do something, anything, to lessen your pain. I googled "complications of rsd/CRPS on the stomach.It pulled up so much information, and many were chat forums. Just scanning through them, I'm wondering if you were to communicate with other patients, would they be able to shed some light on what's happening with you? Two of the sites are:



did wonder if your docs have tested you for food allergies. If you do have them, along with the rsd/CRPS, could it be causing more problems? Could you have Crohns? They say illnesses attack our weaker body areas. I'm just grasping at possibilities.

Please do not give up! We are all pulling for you, praying for you, believing things will turn around for you. I've never asked God to heal me, but I'm asking Him to have mercy and heal you from this attack on your body. I'm sending you love, hugs, and prayers for strength, courage, and healing. πŸ™‚πŸ™πŸŒΌπŸ’•

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