Depression???

[franhr]

Hello there:
My uro is pretty sure I have IC but the final diagnosis will come Nov. 11 when I will undergo Hydrodistention.
My question for everyone concerns depression. I feel as though I can't stop crying and I am not someone to feel sorry for herself. Just the fact that I have been dealing with this day in and day out and the thought of having to tell family and friends is weighing heavily on me at this time. I feel like I don't want to burden my husband (who has been great). Just the thought of having to change my whole lifestyle and my husband's with that matter is killing me. We always go on long rides or go out to restaurants once a week now that the kids are in college and I see all this disapearing.
Does/did anyone else feel this way at first??
F

[lindy lou]

I sure did! It takes time to get used to the idea of a chronic illness and find the new "normal". I cry less now than at first, but still have moments when I can't believe this happened to me. There is a relief that comes with knowing what is wrong and that you can start on treatment. I have accepted that it may take time to figure out what treatment works for me. Not surprisingly, family and friends have been really supportive and help me work around my diet and comfort needs. I still feel depressed when I go the grocery store and see all the good food I used to eat and feel like I deprive my husband of the food he enjoys. We have found that we still eat out, maybe not as often, and do pretty much what we used to BIC (before IC). I too have college students and one of the most difficult aspects of this condition is that I can't ride in the car to visit them as often as I would like or share in the pick up and drop off when they come home. You, too, will find the new "normal" over time. Most ICers are living relatively normal lives and we may too some day.

[Sarojini]

YES. :) What you're feeling is completely normal. Being diagnosed with a chronic disease is a big thing in itself, and all of the lifestyle changes it may require can feel overwhelming and huge at first too. I think most of us go through a "mourning" period after our diagnosis; as if we are mourning the loss of our old lives. However, the mourning period WILL end. You will start the diet, find your triggers, start exploring treatments, and generally go on with your life, and suddenly one day you will find yourself saying, "Hey, this isn't so bad!" Lindy's comment about a "new normal" is exactly right, and you will find what that is for you in no time. It's a change, yes, but look at it as a learning experience... you are about to learn exactly what you're made of as you stick to the diet and navigate the medical system, and you are going to find that you are stronger than you ever thought possible :)

The truth is, most IC patients find a combination of things that help them feel much better and live a normal life most of the time. Many even are able to eat favorite foods once again after some time!

I also advise communicating with your husband frequently -- this is extremely important. Read articles about IC together, discuss your frustrations and listen to his, and take care of each other. Try not to let the disease drive a wedge between the two of you -- let him in, let him love you ;)

Finally, if you ever find yourself unable to cope or find your depression to be beyond your control... don't feel bad about calling a therapist or a psychiatrist. Don't wait until all you can see is darkness -- just call. I did, and it has been a big help. There is NO SHAME in asking for professional help!!!

Sending you lots of :grouphug:s

[Betsie]

When i was so desperate to feel better and wait for a teatment plan to kick in, I didn't see what is was doing to me emotionally.

My Dr and I had a long talk, long after my Dx and though I was sure I wasn't depressed I was so overwhelmed with this and a few other chronic issues. He asked me to try an antidepressant and see if it helped. YES, it helps so much, though I had to find the right one...that is key.

If you talk with you Dr (mine was my GP) I think he can explain to you the many reasons people need and respond to anti d's. It is not always for the reasons society thinks and is often a first line treatment in many chronic illnesses.

I am sorry you are feeling so weighed down. You can't change what is going on, so trust your hubby and family to stand beside you. You will get your life back and in time like the others have said, you will concentrate much less on it. Cry it out and then after your Hydro, make sure your Dr has lots of info for you. :) It may be that you will respond to treatments easier than you might think is possible...I did and then tweaked the plan along the way.

:kissing:

[franhr]

Thank you all for the kind words of encouragement; I can't imagine what shape I would be in if not for this site as a constant reference.
Intelectually, I understand everything I am experiencing but my emotions have just ruled lately.
I am encourage to learn that this is normal and the greiving process will subside with time. I am seriously considering finding a therapist or psychiatrist if this persists.

[ICNDonna]

I think seeing a therapist could be very helpful. My IC was diagnosed nearly 30 years ago in 1975. It was a real blow at first, but I have since learned that there is life with IC. If you can accept the IC diet as a challenge, rather than an attack, it does make it easier. For example, I have found that I really like pasta with a little melted cheese and butter --- so I do fix spaghetti sauce for my family and I eat it my way. And we do go out to eat --- even for pizza (I order it without tomato sauce and it's very good).

I'll be thinking of you when you have your hydro. Be sure to let us know how it goes.

Warm hugs,
Donna

[franhr]

Thanks ICDonna - Just came back from my pre-operative tests so I guess the wait begins. I was told not to take herbs such as Valerian root, which I have been taking to relieve the spasms and help me sleep...it should be interesting to see how I do without it this coming week. Something about Valerian making the anesthesia effects worse.
I will give you an update after the 11th.
Thanks to all.
Fran

[vm]

Just posting to welcome you to the boards and to offer more words of hope. :welcome:

3 years after my diagnosis I am able to go eat in restaurants and take long drives. I recently drove 7 hours with my 6 year old and 3 year old to go to a funeral and I was FINE the whole time. My life is pretty much back to the way it used to be --- aisde from the fact that I take 4 medications regularly and an antibiotic after sex. :lmao:

Most of us do find treatments that help so always keep that tucked away somewhere, OK? Don't lose sight of that. :kissing:

[Annie2]

Fran,

The others have given you excellent advice but I want to echo what they have told you.

Being diagnosed with IC is very emotional. The physical pain/discomfort of IC is a visceral pain that is transmitted through the nerves to the emotional center of the brain. Our emotional responses to developing this disease, in and of themselves, are significant. They are further magnified by the body's interpretation of the pain signals in the brain. When you consider this, you realize that seeking help in the form of therapy and/or antidepressants is not a character weekness. It is actually a part of the disease for which medical assistance may well be needed. You are in the toughest period of this disease, going through diagnosis and not yet receiving treatment. What you are experiencing is very normal and very much like what many of us went through, too.

Let me reassure you that, as the others stated, it does get better with time and treatment. That is not to say that there won't be times in the future when you throw yourself a great big pity party. I know I still do that every once in awhile when I have a flare and many others here do that, too. I suddenly developed IC 2 years ago this week (woo hoo, it's my IC anniversary---not that I will be celbrating it). I was 55 then and hubby and I were all alone in the nest. My hubby is a few years older than I am and we were looking forward to his retirement and what we had planned to be a wonderful time for us to do all the things we couldn't do while raising a family. Those plans were blown out of the water by IC. But now, 2 years later, I am feeling better. I am not as good as I want to be, however, and am still tweaking my meds to find the best possible combo for me. Life is so much better now, though. My hubby and I always enjoyed long car rides, as you said you and your husband also do. Let me assure you I am able to do that again now. In fact, my husband and I took 2 vacations in the past 6 months and both times drove over 3,000 miles. It took some extra planning and packing to be sure I had all I might need with me, but I was just fine and enjoyed the trips. The foliage was beautiful this fall and we took several long drives to get out and enjoy the autumn splendor. We eat out frequently at restaurants we have found to have IC-friendly items on their menu. My hubby's retirement will happen the beginning of January. Our plans have now been modified. For now we won't be doing the international travel we wanted to do, but do plan to travel in the US. My uro is working with me to be sure I have contacts with uros in different parts of the country should I have a problem while traveling. We are looking into motorhomes as traveling in one and having a kitchen and bathroom always with me would be more comfortable.

Yes, your life and plans may have to be modified a bit to fit your own circumstances, but there definitely is life with IC. Most do find treatments that enable them to live reasonably normal lives. Some find the right treatment very quickly. For others of us, it takes a little longer.

Hoping you will very quickly find the right treatment that enables you to get back to enjoying your life! Until then, we're all here for you and are happy to help in whatever way we can.

Annie :flower:

[Iris]

Hi, and welcome, what more can I say, the gals have given you excellent posts, and I totally agree with them one 100%. It is overwhelming at first, and we do all experience the grief at losing our old lives, but with the right meds, and other things that help us with our IC, life can be almost back to normal, and a lot of things can be enjoyed, it just takes time. Any information, support, compassion, and even venting when needed, is always readily available here on the network, and the support of the gals, and our few guys is phenomal. I know personally, it is a strong support system for me, and has certainly made my life with IC, a whole lot better, knowing I have IC sisters, and brothers, who are sharing the road with IC along with me. Take care, and please keep us posted as to how you are doing, welcoming hug Iris. :hi: :welcome: :grouphug: :flower:

[donutgirl]

Welcome. The only thing I would add is that there are therapists out there who deal w/ people who have chronic pain or illnesses. I have an appt. w/ one next week. I was diagnosed the end of May and it is definitely a rollercoaster ride until you figure out what is going on and what can help you.

Hugs,

DIANE

[franhr]

Wow I am overwhelmed! I never expected this many replies in such a short period. I feeling much better now and am actually hopeful that I too will someday be at a place where I have actually gained some control.
Don't be surprised, though, if I come crying again...
My gratitude to all.
Fran

[ad8123]

:welcome: Hello Fran,
I know that many others have told you the same thing and I am going to tell it again. It does get better and it is normal to be devastated. I became ill just about 1 and 1/2 years ago, diagnosed about one year ago. I had only been married one year when diagnosed and it was nothing short of devastating-my new and probebly shaky for other reasons marriage is ending but my life feels as if it is open to all possibilities again. I was so devastated, thought there was just no reason and had no idea if I could make it, I did and you will too. I agree with the others read all you can and share it with your husband and family when you can. You will probebly find that not everyone gets it (or maybe cares) but those that love you will and soon you know what you limits are. I can eat out anywhere now (I use prelief and avoid some foods that cause me problems) and with a recent nerve block (hypogastri plexus block) I am taking significantly less pain meds and I am feeling quite normal again. In time you will adjust and you will feel happy again you just need to grieve, please be gentle and kind to yourself and give yourself the right to grieve. You can overcome IC. It can take time to find the right treatment but do not give up there is so much out there to help us, it just takes time. And as some of the others said if you can tolerate antidepresants they can help both the mood and the pain, and are definitly worth a try usually IC'ers start with amytriptoleen (sp) or Elavil. Good luck and lots of hugs!

[curlycue]

Fran Welcome.
All I can say is Treatment, Treatment, Find the one that works for you. At first it might seem like a marry go round but you will find the treatment that works for you. Dont get discouraged it took me 6 monts to find what worked for me. Good Luck and you go Girl.

[franhr]

Well - I underwent my cysto-hydro yesterday and it confirms that I do have IC.
I am in quite a bit of pain, especially when I urinate (feels like a razor blade) so I am taking percocet.
The doctor also prescribed Elmiron and Ditropan and wants to see me in 4 weeks and he will also discuss the results of the biopsy.
At least now I know for sure what it is that I have to deal with and I am releived that I can finally take some control over this with the help of my uro.

I'm sure I will be visiting here frequently and I hope to someday be able to help others cope during difficult times...

with gratitude,
Fran

[Sarojini]

Well, I'm sorry to hear that it is indeed IC, but ... you are right. Now you know what is wrong and will be able to feel more in control as a result. You can start treatment and see what helps and what doesn't. Don't be afraid to tell your doctor if something isn't working for you during this time... remember, there are many other options out there, so if one doesn't work, just tell him/her and move on to the next treatment. You WILL find out what helps eventually, despite the trial and error, and you WILL feel better :)

Do visit the boards often for support when you need it -- and I'm sure you'll be up to offering your support to others in no time flat :)

[Betsie]

Hi Fran,

Well that's a relief...in a way that only ICers could understand. It is such an emotional disease at onset while it is physical in nature. The Dx almost validates our fears and misunderstanding of our emotions and physical changes.

I just never thought my life would be normal again. EVER!!! How could that be possible. Two and a half years later, I am here managing very well and having pity parties very infrequently. :) They are neccessary though, sometimes. :biglaugh:

Keep an open dialougue with your URO...the elmiron may take some time to kick in...be patient and do consider the antidepressant theory, it could prove to be the single best thing to get you through the early Dx period. Probably your GP is best on this topic.

I just read Annie2's post...WOW, that was excellent and it is so good to have the facts in such good perspective. My Dr. feels very strongly about the use of them in this regard and Annie really puts it in perspective.

Wishing you continued success......and lots of patience!

I am glad to read that you are doing better and I will guarantee you will be very supportive and welcoming when someone comes along with your same fears...we all get there eventually.

If you are still uncomfortable from C/H, don't be afraid to call URO...many of us have a slight infection from the catheter and need a short course of antibiotics following this.

[ICNDonna]

Thank you for letting us know about how your hydro went. It's normal to have irritation when you urinate those first few times after the procedure. I always say it feels like I'm goose-bumpy all over and it curls the hair on the back of my neck. That feeling shouldn't last more than a day or two --- if it persists, or if you have an increase in discomfort --- be sure to call your uro. Any time we have an invasive procedure there's a slightly increased risk of infection.

Sending warm healing thoughts,
Donna

[Prozan]

I would like to know some of the antidepresants some of you are on and which ones help.

Thanks

[curlycue]

Hi,
I am on Prozac 25mg. I have to tell you that I fought to take any antidep meds but after 7yrs with this diease I had to take them.

[mayray518]

Of course it is very common to be depressed when diagnosed with IC. Anything chronic and painful for that matter. I lost my job and home due to IC so my whole life was put on hold for years. Now I am doing well, thanks to elavil, but it was a long time coming. There is hope for all of us today and more therapies are coming out every day. Plus the fact that we can exchange advice and stories on this site is wonderful. Good luck.

[PenguinK]

I'm new to this too, and have been really depressed about it lately. I actually think the "unknown" was worse than being diagnosed with IC.
I wish there was a support group for our husbands, though. Mine has been great, but looks so helpless when I'm in my greatest "attacks" . I realize they feel like they don't know what to do and that bothers them. He actually was in the room for the Cystoscopy and got to see the horrors inside my bladder. He is also going with me to my Urodynamics study on Tues. What a trooper! :kissing:

[vm]

He sounds awesome. It makes such a difference to feel like we have someone in our corner. :)

[sylvieCT]

For me it wasn't a blow at first, but now it has been a few months and it is starting to kick in emotionally. I feel like..wait a minute...this isn't going away. I miss feeling "normal" At the same time, I am grateful that I am not more sick. I find that there are many ways to live a full life with IC. I am not in constant severe pain - just frequency and pressure so I am lucky that way. Even though I pee every twenty minutes, I plan on finding a way to make it work and still go camping and travel every year. It helps to have a very supportive partner and a positive outlook. I try to find focus on what I can still do and how I can make things work that I still want to do. It takes time to figure it all out.

[Katrina]

:welcome: to the ICN
Sorry you have IC. All of have to face knowing we have this and how we do so always has somethings in common and somethings different. Have faith that you will find a treatment that helps you....or a cobination of treatments to help you. Car rides are one thing I still enjoy....I may do them differently but I can do them again.

:grouphug: You found us and we can help you through.