Any suggestions for a "rookie"??

[disablednurse]

I have been suffering from terrible depression for the past few months. I am on Cymbalta and I take Clonazepam twice a day, but I cry EVERY DAY for hours at a time. My husband is understanding to some degree, but I am a firm believer that you can't "truly" understand unless you are experiencing IC or FMS. This has changed my life, as I am sure it has everyone of your guys' lives, as well. Will it get any easier to deal with???? What are some helpful suggestions anyone can give for overcoming the depression and just the pure fact of having a chronic illness? I have 2 little boys who crave my attention, and I just don't feel like I can play the "Mom" role some days. I just want to hear from some of you who have managed to pull yourselves up and find a way to see the bright side of things. By the way, my username does not indicate I am disabled, officially, but I have applied. It has been about 2 months now. Have any of you had any luck with SSA disability? Any suggestions on that would be greatly appreciated, as well. Thanks for listening. I really don't have anyone who truly understands....I was so happy to find this Message Board. What a gift!!

Thanks, in advance, to all! :pray:

Mendy Hale

[Babs RN]

First off, a hearty welcome from a fellow partner in crime, that is--a nurse. I think that makes this disease harder to deal with for us(not that it isn't with others just in a different way for medical people)because you are so used to having some sort of control in a health care setting, now you join the masses and lose that control. I have daily pain and am on pain management and am preparing to go back to work for the first time in 3 years. I have worked in critical care, ER, post partum, special care nursery, and oncology and just got hired as a school nurse. We will see how it goes, I am very excited but scared too. I know I can't do the floor thing right now but miss nursing horribly.

Welcome again,
Barb:welcome: :hi: :smile tee

[disablednurse]

Barb,

You are right....being a nurse puts this whole disease process into a whirlwind. They say "knowledge is a tool", but sometimes it's better not to know. :) Everytime I go into the OR for a procedure, I'm the worst patient. Asking questions...questioning answers....I know...I'm terrible. It stinks to be on the other side. However, it is very enlightening...and can help us be better nurses, I guess.

That sounds like a great job (school nurse) for our illness. Hopefully, it will be very laid back for you. My last job was in home health, and it wasn't too bad, except for the stooping to do wound care in some unclean homes, and the LONG driving time. My pudendal nerve has suffered SEVERELY. I used one of those "special" cushions, but it didn't help at all. Finally, after only 2 1/2 months, I had to leave. That was in March, and I have been at home with my little guy (he's 5) ever since. I don't feel like I rate too high in the "mom" category these days either. I just can't get down and play with him like I could before. I hope he'll remember the fun we do have together and not the things we couldn't do. O.k......enough of that. I'm crying now. :)

Keep me posted on your school nurse job. I hope you like it and it works for you. I'll say a prayer.

Thank you for responding. I look forward to a wealth of knowledge and great friends here.

:angel:

Mendy

[janelle77362]

:welcome:
I had a lot of problems when I was first diagnosed. I was only 21 and couldn't imagine that I would have to live the rest of my life like this. For me it just took time, the ability to overcome, and support from my family. I decided that I was never going to allow this to rule my life. I was told by my uro that I shouldn't work but I decide that I had to work to keep myself sane. I have an office job were I don't have to stand on my feet all day but it is pretty amazing that I am working period. I took three weeks of leave from work when I was first diagnosed to get my wits about me and it really changed my perspective on the whole thing. I had time to sit and think and make the realization that I had nothing but time and needed to make the most of. I still get depressed sometimes. I feel bad when I can't do the things I want to with my children because I am uncomfortable or can't go somewhere where I have to walk alot. But my daughter, who is 5 now, is beginning to understand that mommy has medical problems and I can't do everything she wants me to. She has been a rock for me and frequently prays for my health. My husband has been an integral part of making me feel better. My suggestion is to surround yourself with positive people that make you feel good about yourself. And never give up hope. :grouphug:

[disablednurse]

Thanks for the Welcome, the support and the advice, Janelle. I am so fortunate to have found this message board/support group. It is a blessing in itself. Good luck to you. I pray you'll have many pain-free days. I commend you for being able to work. I do know what you mean about staying sane, though. I felt the same for awhile, but the pain just took over, and I couldn't do it anymore. I miss nursing, and I miss my patients so much.

Take Care!!

:angel:
Mendy

[akrose]

Hi Mendy - I am a nurse too, actually a nurse practitioner. Have been working in hospitals for 21 years till this past feb 2006. The ic made it too painful with urinary urgency to walk up and down the halls and sit and stand 1000 times. So now I do home health- I only see 5-6 pts 2-3 days per week, then spend the rest of the time charting in the laptop at home on my couch and get paid for that time. This is all I am able to do now, I agree with Barb- it is like for years we see all the chronic pain pts and wonder how they could end up like that, then in a day we are changed into them. I never had a pudendal nerve block, but had a sympathetic nerve block that supposedly fed into all the nerves of the bladder and perineum- it worked for 1.5 wks. I am trying Lyrica- but it is expensive and insurance won't pay, they say it isn't indicated for i.c. I also have other plans, because I am not going to spend the rest of my life like this, so if you want to know, you can p.m. me. Sometimes I think the years of nursing did this to us, and we didn't know it was affecting us this way.

[ICNDonna]

When my children were growing up, I worried that my health problems were having an adverse effect on them. What happened is that I have three adults who are very good friends and who are very caring, compassionate people. My youngest son married a girl who has migraines and she frequently comments on how very supportive and understanding he is.

And their fondest memories are of things like climbing in bed with me to watch a movie, and especially the scary ones when they hid under the covers.

Hugs,
Donna

[creatingkarma]

I'm sorry to hear that you're so depressed & can't quit crying. I've certainly been there myself. I would call your doctor & ask for a dosage increase on your Cymbalta or maybe try a different anti-depressant. Counseling has helped me tremendously with dealing with chronic illnesses - especially the guilt part that comes along with it. Would you consider trying a counselor? If you do, make sure that you find one who is knowledgable in chronic pain. I hope you start feeling better & your tears turn into smiles.

[Babs RN]

Mendy,
Please PM me if you need too. About the Mom thing...I have a five year old who is autistic and have had my share of guilt in being a good Mom since diagnosis. What Donna says is true, on the rotten days, kids remember nothing of our pain that day maybe but maybe a book in the bed or watching a movie. I still have periods where I think I should be out taking her all over the place but realized spending time is the the most precious. For example, we have a pool in our condo complex and that can entertain my daughter for hours with the least physical impact.

Hugs,
Barb:hi:

[kjd]

Hi Mendy

i totally understand how you feel. i was diagnosed two weeks ago and just feel so confused and upset that I have this chronic illness! I just feel so sorry for myself and lock myself in my room crying for hours and hours to the point where I feel so sick!
I still live with my parents and have been with my boyfriend for 4 years and fear he will get fed up with me and move on to someone "normal". I'm terrified to lose him and have lost all my confidence since I have been ill as I never go anywhere as the pain is exhausing!
The past couple of days I have started to pull myself together and think that I am not going to let this beat me and there are alot more people who are suffering more than I am so I need to appreciate what I have!
I think that this will make us all stronger and I dont know what I would have done if I didnt find this site as no one understood what I was going though. Dont beat yourself up about your depression as its completely normal to feel the way you do but you need to take a deep breath and start to be more positive. Trust me I know more than anyone how hard that is and it makes me so angry with myself :cussing: . I also have had panic attacks too and they are terrifying also.
Justs remember do not give up and no matter how low and horrible you feel you will have a better day and you will be stronger throughout this!
take care

[stacey79]

I don't have children, yet, so i can't comment on that. But, I have been dealing with my bladder my entire life. (Since I was 3.) What I can tell you is there will be hard times and good times. IC is very up and down. Two years ago, I was at my very lowest point. I could hardly leave the house or do anything. I struggled with being depressed and spent much time talking with God. Slowly, things started getting better. I think dealing with the diagnosis of IC is just like dealing with a death. We go through all the phases of grief: denial, anger, etc. Finally, we get to acceptance. It may take two months or five years to get there. And once we're there, we still are going to have times where we don't like it.

What I can tell you is that things do get better. Now, I can see some ways in which God has been able to use my IC in my life. But, that doesn't mean I run around cheering about my stinky bladder all the time! Right now, for example, I'm on my second UTI in two weeks. And I'm tired of it. I've spent my time feeling sorry for myself. I've spent my time telling God I'm tired of this. And now I'm moving on. I've gotten to the point where I allow myself a set period of time to be upset and then get back to living my life.

You've gotten some great suggestions here. Surrounding yourself with caring people is a great idea. My husband has been great through all this. He is able to gentley remind me to hang in there and he's also able to just let me vent.

I guess my biggest point is that it's OK to be upset. You wouldn't tell someone who just lost their spouse to get over it. Dealing with this takes time. Take some time to do that. Make sure you're moving in the right direction when you can, though. You don't want to get stuck there forever.

Sending lots of warm hugs and prayers your way! :grouphug: :grouphug: :grouphug:

[onlyme]

Mendy,
I am so sorry to hear all that you have been going through. It is overwhelming enough to be a mom of 2 these days, then to be diagnosed with a chronic disease to deal with...It is understandable that you feel depressed.
I was diagnosed with IC about 3 years ago. I was scared, in pain, and felt like I was all alone, because noone could understand what having IC is like.Finding these boards was very helpful to me, as I was able to have some of my zillion questions answered by people who actually live with the disease.
I will warn you though, for me (and this might not be true for anyone else) I found myself on the boards all the time, and eventually, IC started to be my life...all I could think about, and the world was bleak! I had to get away from the boards for a little while.
I have, and still do suffer from depression. If you are on meds and are still depressed, you should really speak to your doc ASAP!!! I also found that counseling worked very well for me, and may help you as well.
I always worried about my kids as well. My daughter is 9, and I have been "sick" for about as long as she can remember. I, too had long episodes of crying all the time. One day, for some reason, I thought of myself at the ages that my kids are, and I realized that if my mom had been crying all the time, I would have been a wreck. It really helped to put things in perspective for me.
I hope you can find some peace and happiness in your world...let others in...don't let IC consume you!
Wishing you all the very best,
Sheri G

Please feel free to pm me if you wish to talk!!! :)

[disablednurse]

Thank you all for the wonderful suggestions and feedback. I wouldn't wish this illness on anyone, but it is nice to hear from those who understand first-hand what you are going through.

I try not to let IC consume my life, and I remember when I "did" work, that I sometimes got too busy to remember the pain. That sounds silly, but it really did happen. Unfortunately, the fatigue knocked on the door and reminded me of my pain. :evilsmile

As far as my children go, I do feel I neglect them on days when pain/fatigue is at its worst. However, I am hoping, as some of you have mentioned, that they'll remember the "good" days and not that Mommy was sick all the time. My little one will ask me EVERY morning..."Does your tummy hurt today, Mom?" He doesn't understand why it hurts and there's no "boo boo" there. :confused: When I had my surgeries he could see why I was hurting..poor guy...he probably thinks I'm crazy. :)

I am grateful, again, to all of you for your warm welcome and your much needed advice. I feel like I'm surrounded by IC friends. :)

:pray: :pray: :pray:
Mendy

[janelle77362]

Hi Mendy,
Have you thought about going to school again so that you can get a "desk" job or is your IC too bad? I know that I would never be able to be a nurse because of the pain and frequency but I am able to put in over 40 hours a week as a project manager. I have moderate IC so if your IC is too severe it may not be an option for you. But if its not they have a lot of great online colleges and universities that will allow you to get a degree in business and a lot of other types of fields where physical abilities are not required. Also if you are disabled than you will be able to take courses almost entirely for free. I go to an online university and it has really increased my sense of self worth and helped me immensely to advance in my career.
Just a thought!

[Tina K]

I just wanted to send a hug your way. It's so difficult with little ones you think you are this horrible mom. But believe me when I say they still want you for their mom, sick or not. It's hard and it's depressing and it's just draining. Not many understand. I cry a lot it is getting easier and easier to accept that I have a chronic illness and little things you will find will help you feel better physically and emotionally.

One day at a time, one day at a time. I haven't been on here in so long, but so glad I am back. :hi: Giving a happy hello. I didn't read all the posts so I am sorry if I repeated myself at all.