new and depressed

[PenguinK]

Hi. I'm just venting here, as I now realize I'm not alone.
I am a 34 year old wife and mother of a 10 y.o. boy. I was just diagnosed with IC and had my world crash down around me.
I am a work-aholic and can not stand all of the sick days I've had to use this year due to the pain. I literally did not get off the couch except to use the bathroom or go up to bed for 12 days straight before my doctor started me on the meds for IC.
I keep hearing about how people have to quit working after their diagnosis, and it is really upsetting me. I asked the principal at the school I work at if I would still have a job waiting if I had to take an unpaid leave. I realize that there are laws... but there are also loopholes.
I am also experiencing the side effects of the meds/ stress and they haven't been pleasant. My hair started falling out slowly on Sat. I get a small handfull now and then when I shampoo. I am afraid of loosing it all. The dry mouth and itchy skin is bad enough, I don't want to go bald too. :headbang:
I need some serious coping strategies or reassuing answers to keep me sane. I am already on Zoloft 25mg. on top of all of the IC meds.
I'm rambling. I'll stop there and read more.
KK

[franhr]

Hi KK:
I was diagnosed almost 2 weeks ago and I understand what you are going through.
It is difficult and I'm sorry you are suffering the side effects from the medication.
I don't feel qualified/experienced enough yet to provide you with suggestions as I'm working on my own but I just want to tell you that you will be in my thoughts.
This site and it's members have been a godsend to me and the will be to you as well.
Please consult your physician, as he/she may have advise about the side effects.
Hang in there.
Fran

[kelly McC]

I am able to work. I did go through a difficult period and missed quit a bit of work last year. I was able to go to part time which has made a difference for me. I did take a 6 week leave during that time. Many find treatments that help them. I did experience some type of side effect with all my medicines I found for the ones I am able to take the symptoms got better. If you continue to have the side effects I would discuss it with your doctor. Have you tried the diet? For the hair loss .. I am a hairstylist and when my hair started falling out I used both Nioxin and therapro both professional products and they helped.Just a suggestion. Good luck and sending huggs,
Kelly

[ICNDonna]

I'm retired now, but I worked full time for twenty years with IC. At first it was really tough, but once I found the most effective treatments for me and which foods and drinks I need to avoid, it did get easier. Hang in there. I will get better.

Warm hugs,
Donna

[Katrina]

I take it you are on Elmiron and that is why you are loosing your hair??? What I have heard from some others is stoppin the med and than restarting it can sometimes get rid of that side effect. Please remember that it is often the worse stories that want to post....not the extremely possitive ones. I hope you are able to heal and live your normal life soon. Keep up the fight!!! We will help you through it!!! Please bring us more questions if we can help you in any way and keep us updated!

:grouphug:God Bless,

[kadi]

Hi KK--
I am a teacher & developed IC a year & a half ago. Last year I missed, I think, 27 or 28 days of school and went in to work many days very sick. I was also worried I would lose my career. (I've been a teacher for 13 years & love it--currently teaching high school, but prior to this taught 5th/6th grades for 10 years)

Now that I've had a series of DMSO treatments, and found oral meds that help (Elavil 20mg, Ditropan 5mg, Necon 1/35), my life is much closer to normal! So far this year (1/3 of school year done), I have missed only 2 days of school (and one wasn't due to IC). I am able to wear pants & jeans again, go to the gym & yoga classes, attend church & prayer group. I am not 100% yet, but am fairly stable & hope to improve still more. I could not do any of those things even 6 months ago.

I remember well how very sick I was a year ago and how very afraid I was after months of illness that I would never get better. I just want to encourage you that you might be one of those who get better quickly (and I pray that for you!) or you might be one that it takes a while for, but don't give up hope, healing can come even when you've been sick awhile. Please feel free to PM me if you need encouragement or (if you're a teacher too) strategies on managing IC & teaching issues.

Wishing you better days soon!

[lindy lou]

Welcome to the message boards. You will find a lot of help and information here. It helped me immensely after my dx in July. I too had a rough time after my cysto/hydro. I was out of action for three weeks. I was able to start teaching again in the fall and although some days are a challenge, I have survived. The meds have started to help with pain and sleeping and I am getting used to the diet. Hang in there and come here or PM us if you need some support.

Linda

[sheba]

Linda and Kadi,

I am not KK, but am new to this whole thing and a teacher too. I just had to miss a few days of school, too and am very worried. I've been having bad dreams about needed to find a job where I don't have to stand, sit , or walk around as much as I do now with my third graders!! THat scares me...my principal is very understanding but I'm worried since this is all just beginning...thanks for your notes to KK b/c it gives me some hope. i am hopefully going to see my uro. this week to ask about other meds/treatments to help. I'll have to read more about this DMSO. I just want to get better...like all of us, I know. I am a little scared to go back to teach tomorrow. KK, has it gotten better for you?

[kadi]

HI Sheba,
A couple of things that have helped... I have a stool I can perch on & see most of the room or can stand next to it & put a foot up on one of the leg supports. I also got an IC cushion from the ICN store on this website for my chair when i sit to grade papers or work on the computer. If you do reading circles, it might be really nice for you to have one to sit on your chair with the kids on the floor around you. Yes, teaching is really hard with IC, but hang in there! (Even though I'm doing well, I keep an emergency sub lesson plan on my desk always, so if I wake up in a flare, I can just call the sub computer, go back to bed).

(I think it took a longer time than usual for me to get better because I'm allergic or intolerant to a very large number of meds.. You will hopefully get better faster than I did!)
Please feel free to PM me if you need anything, okay?

Wishing you better days soon!!!!!!!

[PenguinK]

Hi Sheba, and other teachers. I am a Teacher's Aide, so I don't have to worry about lesson plans for a whole class, but I do work one-on-one with an Autistic Child every day. He relies on me for the structure and support he needs. I'm sure it is very hard on him, not understanding why I'm not there some days. (I've never really taken sick days before this) He has even said "some times people get sick." Which is his way of trying to make sense of it. I've been in touch with his parents and they have discussed it with him. They pray for me every night before bedtime. :)
I have a kitchen chair cushion on my chair, but we move around so much that I am never in the same place! In the Resource room I sit on a "boppy" pillow- (the one to hold up a baby learning to sit up) I've found the U shape to be quite comfy :)
My only problem has been walking around the school from one classroom to another and participating in Therapy Movement Groups. I just don't see myself dancing around to the Hokey Pokey some days. LOL There's not enough Pyridium Plus in the world for that! I sit in a chair and do the motions while the other adults dance and move with the kids.
I am going for my "surgery Consult" on Dec. 6. That is where I will find out if I need to take a leave or not. I only have a few sick days left this year, so I need to find out what to do next.
Good luck to you. I will keep you informed on my progress.
KK

[sheba]

Thank you for the ideas! As I am sitting slumped in my chair waiting for my kids to return from lunch I'm thinking how good those cushions might feel!! :) I may just have to sit more than i am used to doing but i know the kids will like me sitting with them more, too! Thanks. KK, I hope your surgery consult goes well...i've finally got an appt for this wed. maybe that will lift my mood...well you are all in my prayers, too....good luck

stephanie (i keep forgetting that sheba is my name that pops up here...sheba is my basenji puppy who helps guard me when i'm depressed and hurting)

[ad8123]

I just want to add, I had a terrible year after diagnoses and had to stop working for a while but noe I am doing so well. It just took my docs awhile to come up with the right treatment with me. The Elmiron also caused me to loose my hair but it came right back in when I stopped the med. I take neurontin and atarax and ultram 1 or 2 a day to manage my pain now. I had a nerve block because the pain was my worse symptom the frequecy is mostly controled by diet and the neurontin makes me sleep through the night now. I really think what the others said is right, many people get there lives under control and are fine after they adjust. There are more people in pain posting then managed people, I am guilty of the same when I am doing well i am lucky if I rememeber to check in once a week if I am pain I am here every day. I wish you all the best this is a great place to get support and info :)

[sheba]

Thanks, Angela for the words of encouragement! I think that is what is happening with me...trying to find what works because now i am feeling much better. not confirmed, but i think i had a uti making everything worse and the antibiotics for that have really taken the pain away!! THanks again, Stephanie

[Betsie]

When I first discovered the ICN, I had been dxd for 18 months. the feelings were still pretty fresh, though I was getting on again with my life. Looking back, I can't believe where I am now. I truly felt my life was over and i would just be old and sick well before my time. My pain was so severe, even my favorite pastimes like reading and movies became overwhelming.

Discussing it proved to be useless as the minute the word cystitis entered the conversation, everyone I knew had the same thing and it was a breeze! Wrong. So, I became withdrawn and accepted the pain and the uncertaintly like it was my job...I thought I will remember each and every second of this horrid life and I will never feel better.

Somewhere along the way things started to change and for the life of me I don't remember when or why. I strated back in on life, wasn't consumed by IC and felt relatively good much of the time. I remember having my first "flare" after a long span of success...and the fear bumped everthing right back to the beginning.

But again somewhere along the line, I stopped being ticked off and feeling singled out. I had learned coping skills and I truly think we all have them within us...but it takes time for treatment options to work and be tweaked. It takes patience to learn our new norms and it takes a huge desire to want to have a life that includes IC, vs. one that is only IC.

I know you to will get to the point where you aren't as sharp on the details as you are right now. You will find the right course for you and you will come to realize that it's a very personal way of getting there. So many here have varying severity and treatment regimens, but if I had to guess, i would say better than 60% are in the mild to moderate zone and find their treatment plans effective most of the time. that is a huge guess on my part, but the point is, i really can't remember the worst of this and I am certain you will feel that way someday too. Be patient, empower yourself with knowledge and live each day to the best of your ability. And yes, allow yourself the crummy ticked off times, later on they will be far less frequent. ;)

[ad8123]

Wow Betsie! That is an incrediable post full of encouragement. I think you are right most of us get to a point where we have a life again. If it helps anyone, I was doing really bad and being told to file for disability when a pain doc came up with the idea of doing a petened procedure (A hypogastric plexus block) and wow what a difference. I still take meds and I have totake them on time or ouch I hurt but i pee like a normal person, sleep through the night and can cheat a bit on the diet. I am back to work and feeling very good and happy (yes happy with IC something I thought would never happen) I also am getting a divorce since my hubby wanted it and just being near him makes my bladder spasm so i am starting a new life and it is the life I dreamed about before I had IC!!!!! Hang in there. more often then not it gets better with the proper treatment and support :) :bunny:

[Iris]

Hi Betsie, great post, I can really see myself in the way you described how you felt with IC, I know I felt my world collapsing about my ears, and being, as you said old, before my time. I got through the challenge of dealing with IC, and with the right meds, and having now found a great urogynecologist and physical therapist, am feeling a whole lot better, and even able to exercise again. The physical therapy and biofeedback I am now experiencing are very helpful, and has given me an even more positive approach to living with IC. It was great reading your post and seeing how you are dealing with life in general, way to go Betsie, hugs Iris. :hi: :flower:

[DCR]

Hi, I'm depressed also, having had my diagnosis confirmed last month. I am finding that the meds zap my energy and I end up sleeping for 18hrs out of the day. My dr told me that is normal in the beginning. One thing he said to me clicked and maybe it will help some of you. He told me that once I get past denial, anger and acceptance, I should look for ways to EMPOWER myself. That word, empower, gave me hope and I am hanging on to it with all my mite. My 15 yr. old daughter is having a hard time with all of this; she is used to having a mom on the go and now I need her help. She's a little resentful that I have not done my normal Christmas "stuff", and even though we have explained the disease to her and she can see how bad I feel, she is still unhappy and that breaks my heart.

I am going to find a way to overcome and get back to being my old self. Hugs to all of you.

[July]

I don't have children. I cannot imagine how hard it must be for you. But I'm so happy to see you seeking empowerment...you will find it and overcome! Rather than going back to your old self you might be a new and improved and empowered self in a way like never before! I'll keep you in my prayers.

[Briza]

I'm a teacher, too, and like KK, what a relief to find out that I am not the only one in the world that feels this way. I also have used all of my sick days and then some this year. And there is this great forum for venting and research. I agree completely with Betsie and Angela. It is so hard to see the light at the end of the tunnel when you are in the midst of pain and struggling to find the right doctors, diagnosis, and medicines that work for you. For me, that was the hardest part to handle. With diagnosis and the right treatments for you, you do learn to cope and then there are more good days than bad and that it something you soon learn to appreciate and thank god for.
Brigette