I am having such a hard time with everything. I mean a month ago everything was fine and all I thought I had was a bad toothache. I went into the ER with diabetes issues and ended up staying 10 days due to my new diagnosis of TN. During that 10 days I went through hell. I tried a variety of meds. I almost died due to a bad reaction to a pain med. I had blood drawn every morning at 6am and then again later that day. I went through 3 IV sites. I had a MRI and MRA. I talked to doctors, nurses, neurologists. I spent hours crying because of pain, stress, disbelief and just plain hopelessness. I could barely walk without help some days. Eating became torture. Sleep became my escape. I prayed so much I think I overloaded God. In one day I went from knowing where I was headed to being lost and running in circles.
Once discharged I took my meds accordingly. I struggled with my diabetes. I dealt with nausea. I dealt with feeling lost. With no doctor to really turn too and just getting in the process of getting medicaid, my world felt like it was crashing down. My dad called daily. My husband fought me daily. Each day I could feel myself growing weaker physically, mentally, spiritually. Its a battle that I never wanted to take on but instead was forced into my hands.
Today I sit here. I was in the ER yesterday. I was in Urgent Care on Halloween. Turns out I am allergic to Tegretol. My body was consumed by a nasty rash. I was put on Prednisone which in turn shot my blood sugars through the roof ending me up in ER.
My days are filled with medical jargon now. I smell that hospital smell where ever I go. I almost feel naked without a hospital gown. My face hurts. My body aches. And no one else gets it. No one else can feel this pain that sears the right side of my face. No one gets how sweet it is when I am able to eat or smile or laugh with out pain. No one understands how lost I feel. I am hoping for normal someday. I am hoping to smile and have it reach my heart.
I understand those feelings very well. Too well. It’s s0 hard. I’d try and offer some advice, but I haven’t figured it out yet. Just know your feelings are natural and that you need to stay strong. Remember that you’ve had better days, and you’ll have better days again. Keep hope. Please feel free to message me any time you want to talk.
Thank you so much Kim and Crystal. Finding this site has helped a lot. In the hospital I often thought about how I would ever get through this or even handle it. Finding this site has given me hope and has connected me to a group of amazing people. In a way I am glad that TN was brought into my life since it has introduced me to such great people. My days are still clouded with dread but this site and all of you offer a silver lining during my days.
I do understand what you are going though and I know that it does not help your pain. It took the doctors a year and a hafe to find out I have TN. had my surgery a few months later in 2008. pain free and then all came back in 2009 in and out of the ER and stays as much as 7 days. One day I was in so much pain sit there just crying My BF remeber that Pain Mt said I could use a different med that he was taking and give me some to try for the day, OMG OMG Pain free. Next day I went to my doctor and asked if I could change my meds and explain how thing were going and he said I looked so good, not all druged up like I did before.
In all look up all medication that you can take for TN and reseach them and talk to everyone and just ask. make sure it will not effect and thing you already need make sure they look up the new med in front of you and even read about to right there.
These doctors get pain alot and they should that the time to sit there and really help us to the fullest and not just say or here is an different kind of med try it nad see you in a month or two....
I understand how you feel to a T!!! hospitals, drs, nurses, dentists, phsych referals etc... I too was allergic to the tegretol and had a horrible rash everywhere. I felt like NOBODY understood what i was feeling like. I still do. But I finally have hope. Im scheduled for an MVD on NOvember 22nd. Getting prepared for this has been complete chaos. I have 3 kids, 2 dogs and being the "momma" that i am, i have several other people that depend on me. BUT it's time to put yourself first. I know how hard that may sound. But you HAVE to do it... I HATE HATE HATE that i have to stay in the hospital for 3 days because when i first went they tried to admit me on a 5150 hold. Months later i ended up on a hold because i was suicidal from the pain. ANyway, im rambling on and i really just wanna say PLEASE DONT GIVE UP. Demand medical help, seek answers. You will get through this.