Hi Kenna! Wow that is a long time to suffer like that. I have been worrying so much about what I will do about going back to work. It seems impossible now between the pain and the drowsiness I get from the meds I am on. How do you do it?

Honestly, I have no idea how I do it. At times when I'm overwhelmed and stuck in class for 16 hours a day, I have to take time out for myself and just leave the classroom to gather myself again. It's not easy thats for sure. But I wanted to make something of myself before I had to deal with this and the last thing I would want to do is to let this ruin and steal my life away more than it already has. I need a future and I refuse to stay at home feeling sorry for myself alone. The way I see it, no matter what I do, I'm going to be in pain so I might as well further myself. :) It takes a lot of patience, determination, and strength to even consider pushing yourself to do things you would rather not do. I was lucky enough to be raised by parents who taught me strength and I knew from them growing up that nothing comes easy or free and there's always someone else in the world that has it worse than you. So I try to keep my head up and keep going. And I may not be the best at what I do compared to those around me, but I have to give myself credit every now and then for even putting in an effort. Because we both know with PHN and Shingles, something as effortless as breathing, takes strength and persistence. There will be many days where you'll say I can't do this and somewhere inside of you, you'll find a way. You're stronger than you think so keep your head up. And if the pain is too much to handle, don't be afraid to take a few minutes for yourself. It's key to keep yourself going.

Hi Patty, I saw you posted this on another discussion

"I wish there was someone here too who could tell us the pain went away. But you are right- if its gone, they probably have their lives back and don't need to come to a support group. People don't understand this pain either. I must get asked 5 times a day by people "Are you better today?" It isn't like any other illness where each day you feel better. The pain is the same day and night!"

I completely understand what you've said. Though I have little faith that this will leave my life anytime soon, I guess with something such as this you kind of just have to find faith that it will one day go away. And I've thought a lot about why people don't discuss their pain getting any better... and all I seemed to come up with is that the pain become such a huge part of your life that when its gone you kind of have to learn how to relive your life without pain as your shadow. I know its also an emotional battle because I know for myself at twenty years old, I have so many things I want to just get up and do or accomplish but my body tells me otherwise. I recently met a lady at a PHN pain conference here in San Diego and she is free of PHN pain. It was nice to meet someone who no longer has to deal with it. But in a way, I could tell she had nothing new to tell me because I've gone through all of it and am still going through it. The way I see it, this isn't fatal and for that I am so thankful. And I just have to keep hope that one day it will go away and I'll be able to breathe again.

I also get the "Are you better today?" And I often find myself rolling my eyes because lets face it, at twenty years old you don't usually know much even though you think you do. And if you're not in chronic pain, you don't know what chronic pain means. Am I better today? I don't even say anything and I get approached with "Are you okay? You look like you're in pain!" And my response "Oh really? I didn't even know I looked like that." It's kind of sad actually.

I don't know if you know but www.aftershingles.com is a nice website. They're the only ones I see who are putting an effort out to raise awareness about Shingles and PHN. I'm pretty confident that its just as important as any other illness.

Kenna, I really give you a lot of credit. It sounds like you are a very strong young woman and very determined.
I am 54 years old and I am thinking more towards retirement some day than just starting out. I can't imagine going through this at your age with your whole life ahead of you.
Maybe all I can to is try it. Go back to work and concentrate on staying awake and doing what I can. I work with special needs kids in our public schools. I have been at the middle school for years, but just this year was transferred to the high school. They have someone subbing for me until I can start. I feel bad about that- the sub really works at the middle school and they are making her take my place until I can be there. I know that is messing up things for her- she has kids she needs to get started with at her own school and can't because of me and my pain. This too is making me feel like I have to try. I see my doctor again tomorrow and I'll see what he says too.

Oh I forgot to say thank you for the link to aftershingles.com. I am going to go check it out now! Thanks! :)

Hi Patty. I really appreciate your kind words. To be honest, everyday is a struggle. Around 3p.m. today I was getting my things together to leave for a night class and the pain became so horrible I could do nothing but fall in my bed and moan in pain. The slightest touch on my shoulder almost put me in tears and I don't even have the PHN on my shoulder. I talked myself through it and left my house. I'm sitting in a class where moving is limited and as much as I want to run to my car and go home on my next break, I KNOW I need to stay here and do it. It's difficult. I think that's great that you work with special needs children. My Mom is a kindergarten teacher and she has also worked with special needs children. It's a very fulfilling job and a lot of work as well. I wouldn't jump back into it if you're not ready, make sure you're ready emotionally. Find your strength through your loved ones, the things you love, and those children who think you're the greatest superhero. :) Do you have shingles now or how long have you had PHN? Best wishes, Kenna.

I am so sorry you have to go through so much every day. There are so many people who don't appreciate getting an education and would never try as hard as you do to get one. I am just so impressed by your determination.
I do miss my kids at school. The ones I moved up with to the high
school are ones that I have been working with for years. Most of them for the past 5 years.. one of them since he was in 1st grade. When you have the same kids every year- you really get to know them and really care about them and their lives.
I am very unusual I guess with my shingles. I started getting the pain in my back during the end of the school year in June. It then traveled round in a band to the front. It itched and burned and went deep down into my back where it hurt me to bend even. My doctor said it sounded exactly like shingles pain- but since I never had a rash- that would be highly unusual. He referred me to a spine specialist since I
have had back problems for years- he wondered if something
in my back was pinching the nerves.. the back doctor looked at my MRI and and said no- it was shingles. He referred me to a neurologist who has lots of shingles patients. By this time it was the end of July... I had been started on gabapentin and Lyrica- but small doses. Also had Vicodin for the pain.
This doctor said it was PHN.. I was very rare- one of less that 1% of people who get this with no rash. It was on my left side. He gave me the vaccine for shingles- said it wouldn't help now- but could prevent me from getting it again.
The very next day I woke up with burning pain in my back on my RIGHT side this time.. it got worse over the next 5 days- so much that I called his office in tears asking for something to take the pain away.
I had some cream that was made up for me at the pharmacy. My husband went to put it on my back and said WOW- you have a huge rash. This was a Friday afternoon late- the clinic was closed. I called their after hours number and the doctor said I needed to be seen right away so they could start me on Valtrex.
So we had to go to the ER.. the doctor looked at my rash and said yes, it was shingles.. so we went to an all night pharmacy and got the Valtrex.
My regular family doctor and the neurologist both said they never saw anyone who had the PHN for 3 months- then broke out in the rash on the opposite side.
Now the pain in the left is almost gone- just a little burning in the front is left. But the right side is still very painful. You can still see
the rash in spots. This is over a month later.
The most painful thing is having to wear a bra. I need to when I go out anywhere- unless its cooler out and I can wear a big loose hoodie. It hurts to drive. Every bump in the road makes me wince in pain. Just a light touch on my back- or slipping my clothes off and on causes terrible pain.
Sorry this is so long.. but that is my story. So here I sit. I need to go back to work..I guess all I can do is push myself and try. If you can do it, maybe I can too!

Hi Patty! WOW, that sounds pretty rough to go through. :( I know exactly what you're saying about wearing a bra or driving or even riding in a car. I flinch every time someone else drives as well. I'll let you know about my story. Here it goes:

I was sixteen, lost, my family's medical problems were more than I could handle, and I had absolutely no idea what I wanted to do with my life. But what sixteen year old does? I put a lot of pressure on myself to live up to my own expectations. And they were too far out of reach for my age. My Mom always says I've been an old soul since the day I was born and it finally caught up with me. I went to the river and got a horrible rash on my side while I was there. I thought it was from the life jacket since I spent 12 hours a day on a seadoo. I let it go. It was still horrible a month later but at the time I had a huge fear of ANY doctor and refused to go. I should've known from throwing up everyday and losing forty pounds in one month, but I wouldn't listen. I was also drinking at the time and didn't care. Finally, during my senior year when I turned 17, exactly three months after the initial rash, I felt the worst pain I've ever felt in my life. I made plans to move to San Diego, 100 miles away from the house I grew up in, my amazing parents, and everything I knew. But I knew I had to do something drastic if I were going to do anything with my life. I packed my things and moved anyway. And found all kinds of doctors in San Diego, drove myself to every appointment, to every test, to get blood drawn, and finally my doctor asked me ONE question, did you have a rash? I left crying. And as many tests that I had to go through she didn't seem too concerned about it. I stopped seeing that doctor right away. Went to other doctors who just put me on more pills and more pills and finally this year at twenty years old I made the decision to completely be off of everything. I haven't been sober (pills wise) since I was seventeen years old and I feel like half of my college education wasn't absorbed and merely passed by with the cloudy fog I lived with. It's been a long road. But doing all of this, I realized how far I've come, how much I've grown, and how truly strong I am. Nothing comes easy, it never has. But I know its temporary, and one day I want to look back at this and think to myself "You did everything you could with what you were dealing with". I really can't expect more than that. I'm proud of myself and I know my parents are exceptionally proud. They've been so supportive through all of this and if it weren't for their advice, guidance, and amazing job of the way they raised me, I would've given up a long time ago. When my heart needs to be strong, it's strong, when my heart needs to be weak, I allow it to be, when my mind tells me go and my body tells me no, I always go and when my strength seems to weaken, I let it knowing I will always pick myself back up. Keep going, don't be too hard on yourself. It took me a long time to recognize how much I do with what I have and with what I'm dealing with. Be strong Patty and remember that there will always be someone to talk to about this that completely understands the struggle of living with PHN.

Oh Kenna. Another big WOW. You have already accomplished so much more than other kids your age (yeah, I know- you really aren't a kid anymore) but to me you are. My own beautiful daughters are 22 and 25. You have gone through so much already and have taught yourself more than most adults. I believe you that your parents are VERY proud of you.
I have to really thank you. I have been stressing about what to do about my job and after hearing your story... I made a decision yesterday. And honestly a big part of it came from seeing how you pushed yourself.
I told my doctor I want to try going back to work. I know there is no way I could do it for a full day and still be of any use to my students. He wrote me a release to go back to work, but for half days. I went in and met my new principal and gave him the note. He was so nice. He said they would be happy to have me back (even part time). Not that I am happy he went through this- but it really helps me that he is so understanding- but he has had shingles. He said it was "living hell" and he himself was out of work for 6 weeks. And the PHN did go away!
I felt so happy last night after doing this. Relieved.. and felt stronger. I start Monday- 4 hours a day. It isn't a lot but I think it will take alot of strenght for to do even this.
Before I met you, I was looking into disability and wondering if that is what I needed to do. You gave me the courage to try and get my life back. You really are amazing! Thank you again!

Awww Patty. You have no idea how much that meant to me. It won't be easy, but I know you can do it. I put all my strength I have into furthering myself and helping others, mainly my family. Some words of encouragement and advice.. Don't be afraid to ask someone for help if you need a break. There are many times where I have to inform my professor that I may be taking several breaks because sitting for long periods of time can be very painful. And I have no problem asking for that extra help. Take time for yourself. As much as you want to give up, keep reminding yourself that you're strong and that you can beat this. You have so much to offer to these amazing kids and find your willpower through them as well. There will be times where you'll say I'm done, I give up, I can't do this... and I go through this almost everyday but when I succeed, there's a feeling that I get that I never would if I were able to do it easily. Through the struggle, I've found out more about myself than I ever knew and I've found strength that I never knew I had. Your heart and your mind are so strong so when they are, be proud of yourself. If it doesn't work out and it's too miserable, don't be afraid to face it. I took a few quarters off of school when I went back because I couldn't handle it. There's no shame in that. But I'm very proud of you for taking this chance. Those kids will be ecstatic to see you. Don't be afraid to cry at the end of a rough day or even throughout the day. Crying is okay, as long as you only allow yourself ten minutes and then pick yourself back up and bare through it. I can already tell that you have amazing strength and regardless of the outcome, I guarantee that you'll be surprisingly proud of yourself for attempting. :) Thanks again!!

Morning Kenna! I am going to take all of your advice. You don't know how much it helps me to have someone who is going through this to be able to give me such encouragement.
My oldest daughter, Becca, found this website for me and thought it could help me. At first it mostly made me depressed seeing how so many others were suffering for so long with no relief. I am glad now I kept coming back and joining in.
I really realized now that I just can't let this ruin my life. I have so much I still want to do. I need to get back to my kids. They are worrying about me too. And I do get so much support and help from my family. They try to do everything they can to help me at home and do the things it hurts me to do.
This was supposed to be a really special summer for me. My first whole summer off (no summer school) and my husband, Michael, and I just got married on July 5th! We have been together for 6 years but waited until now. The pain got much worse in the weeks following it- and I am so glad we got to have our special day before this happened.
So even though the summer didn't turn out as planned- I am thankful our wedding went perfectly- just how we wanted it.
He has been really amazing through all of this. He does so much for me. I want to be able to start giving back to him again.
I really can't thank you enough for your encouragement and advice. Especially knowing how you yourself are suffering from this. I don't know what you are studying for in college- but I bet you would do great with a career of helping others somehow. You have already helped me more than you could ever know. You gave me some self confidence that I can get through this.
I will let you know how it goes this week. I really am excited to see my kids again!! :) Have a very happy and painless day!!