Another new normal for me

[cjhsmith]

I've been told that I need to work on my new normal for almost three years now. I've been doing that.

My husband of almost 18 years died almost three years ago. He had health problems that we thought were under control. He had migraine headaches and had open heart surgery. In spite of it, life was good for us and his health was improving....until one morning I went to wake him up to say good bye before heading off to work when I discovered that he died in his sleep.

I had fought so hard to keep him alive, yet it didn’t matter. My life as I knew it was over. I was forty-four years old.

I've remained strong and was told through grief counseling that I needed to work on my new normal. I did that. I put my heart into my job; I explored some new hobbies. I continue to work out at the gym. I was even open to getting married again, if I could find the right person, which wasn’t easy! So, I was working through my grief….until

Throughout my life, I’d battled with UTI’s and in the last few years I was having almost two a year. Antibiotics seemed to clear them right up. Then, in January one UTI didn’t go away. It lingered, and the symptoms seemed different. I kept going back to a nurse practitioner and the last time she told me that I was just having anxiety. Of course I was anxious…I’ve had to bury my husband! So I walked out of the appointment believing her. But the symptoms wouldn’t go away. I went to a doctor this time, and she said I have IC and that I needed to be seen by a urologist.

I finally had an answer…that I never really wanted. I have had enough to endure in my life; how will I handle this, too? So today, I put my wedding ring back on my finger…Unfortunately, the only man who would love me as I am today is gone.

I’m glad that I found this support group because I have many questions for you, I have many worries, and I really need someone to talk to.

Thank you for reading all of this.

I look forward to meeting you.
cj

[ICNDonna]

Welcome to the IC Network. I know you'll find a lot of information and support here.

I'm so sorry about your loss and that you have developed IC. But please do remember that most people with IC do find effective treatments and most of us feel good most of the time.

Sending healing thoughts your way,
Donna

[Little Sunshine]

I am so sorry to hear about your loss. I can't even imagine. My medical story reads the same as yours and even has the same time line as far as my diagnoses went and the UTI's and such. I am so new to this and am struggling each and every day to find my happy place. I have always been the type of person that has appreciated the simple things in life...and now some of those things are gone too. I will say this though...today is the best day (in terms of pain and such) that I have had in awhile and so far all I am doing is following the IC diet. There is hope, you can read about it in the My IC is in Remission part of the forum. Try to stay away from the horror stories. If you read them, you may start believing in them. Every person with this condition is so very different and I don't doubt that you will soon find your stride. Even if your stride is a bit slower at times, you'll find it. You have to believe in the light at the end of the tunnel for there to be one. It's A LOT to take in, lord knows I know. My hope has definitley been tested many times in the past 10 weeks. I don't wish this upon anyone...but if we have to go through it, it's nice to know we aren't alone. Here's to better days ahead!

[earthlady]

I too am sorry about the loss of your husband. I think we all struggle sometimes with our "new normal." It seems to require such a sudden adjustment with no warning. I'm having some very good days right now, when at first I never thought I would get any relief. The past few days I have pretty much felt like my old self so don't despair it can change for the better. It just doesn't feel like it at first.

[cjhsmith]

Thank you to everyone for your kind words. I am still in disbelief...that this also has happened to me. I can't believe that I have one more thing to have to live through.

[cjhsmith]

I am so sorry to hear about your loss. I can't even imagine. My medical story reads the same as yours and even has the same time line as far as my diagnoses went and the UTI's and such. I am so new to this and am struggling each and every day to find my happy place. I have always been the type of person that has appreciated the simple things in life...and now some of those things are gone too. I will say this though...today is the best day (in terms of pain and such) that I have had in awhile and so far all I am doing is following the IC diet. There is hope, you can read about it in the My IC is in Remission part of the forum. Try to stay away from the horror stories. If you read them, you may start believing in them. Every person with this condition is so very different and I don't doubt that you will soon find your stride. Even if your stride is a bit slower at times, you'll find it. You have to believe in the light at the end of the tunnel for there to be one. It's A LOT to take in, lord knows I know. My hope has definitley been tested many times in the past 10 weeks. I don't wish this upon anyone...but if we have to go through it, it's nice to know we aren't alone. Here's to better days ahead!

Is your IC in remission because of your diet? Meds? What seemed to change this? I guess I don't understand this as much. I don't really understand much at this time. It's all so new to me so I appreciate your info.

[cjhsmith]

Welcome to the IC Network. I know you'll find a lot of information and support here.

I'm so sorry about your loss and that you have developed IC. But please do remember that most people with IC do find effective treatments and most of us feel good most of the time.

Sending healing thoughts your way,
Donna

Thank you, Donna. I hope to have as much of a normal life as possible. It's all so scary right now. I've lost so much already; I don't want to lose my life as it was either. Thanks for your support.

[Little Sunshine]

cjhsmith

I hope you are having a good day today. My IC is not in remission...yet! But what I can tell you is that following the diet has helped. This isn't to say that it's been easy, because it hasn't. I feel like my life has been flipped on it's head and each day I am finding new ways to cope. Things that seemed impossible at first are becoming easier and easier each day. Each day that goes by since my diagnoses, I feel more comfortable with the changes that have to be made in order to keep me healthy. I am trying very hard not to be angry with the world, as none of this is anyones fault. I am not on any medication at this point (other than Ambien to help me sleep at night). I got a second opinion on my IC (from a female uro/gyno) she said I may not even have IC, it could just be issues with my pelvic floor. Though there is a chance that I could have both IC and PFD....I hold on to that tiny shred of hope that it's just PFD and I can go back to my normal diet. The second doctor I saw told me that as many as 80% of female patients are misdiagnosed with IC. To me, that statistic warrants further investigation. Has your doctor given you any meds yet? Have you been following the diet? Someone on this board told me that for most people, they eventually find a way to get their normal life back. I have to wake up and believe that each and every day. I am also thinking about finding a good therapist (not cheap I know). Before my IC hit, I was in college working towards a degee in Psychology. After 3 years with chronic back pain...I wanted to provide therapy for other people to help them understand what they were going through and understand the psychological aspect of their pain. Crazy how the tables have been turned, now I'm the one who needs the therapy! My friend also suggested to me a nutrionist (also not cheap I'm sure). But if you have the resources available it may not be a bad idea. I think the time I'm most overwhelmed is when meal time rolls around! At any rate, each day that moves forward from here on out, you will be armed with more knowledge and better strategies to help guide you through this.

[Mothergoose]

Welcome glad you found this site.

Being diagnosed is a good thing lots of people go through years of app, and tests to et a diagnoses.

Most people find with some trial and err, and maybe a few different Doc they find something that helps them, and things do improve, so getting diagnosed is half the battle already won.

It is frustrating because there is no set regium, you take this, this and do this and you go into remission, everyone is so different and every doc way of approaching it is different.

The best thing you can do for yourself at this point is to print off the diet from this site, follow it closely, and read, read old and new posts, educate yourself.

It is a hard road but there are a lot of people who symptoms do improve enough they no longer need the support of the boards, and know the members here will help all they can, for the most part no question is too personal to ask and no info is too much to give, just find your comfort zone.

MG

[jleblanc]

I too am so sorry for your loss, but please don't let a diagnosis of IC define you. I was diagnosed almost 10 years ago (I am now 44), so I then had to find a new normal in terms of my health. I had always been super healthy, eating right and working out, then suddenly I could no longer leave the house. Slowly things got better to the point that my symptoms were manageable. Then slowly over the course of several years, they flared up again....and then unfortunately I had to have a series of orthopedic surgeries, and during the last one (hip surgery) I had a heart attack....at 43 and was diagnosed with heart disease on top of IC. Then less than 1 year later I was diagnosed with fibromyalgia and several other disorders....my life as I had know it was over (I am not trying to overshadow the loss of your husband). Just wanting to point out that health-wise, many of us have had one thing after another piled up on us. Why do you think that no one else would ever love you "the way you are now"?? There are SO many treatments that can make your symptoms so much better, it is a matter of trial and error. I did not respond to many of them, so I basically manage my symptoms through pain management and diet....works ok. Enough so that I feel I can resume my life...work out again, go out with friends, do things with my husband and daughters, etc. Don't give up! You will find plenty of support here, and don't short-change people.....you have every reason to think you will find people who are very understanding of your condition (I prefer to call IC a disorder or condition, not an illness...I'm not "sick")....
Hope this all makes sense. I had IC a long time (fairly severe)...so if you ever have questions, etc please do not hesitate to ask!

[cjhsmith]

I met with my reg doctor yesterday and she didn't give me anything. My appointment with my urologist isn't for two more weeks! I have simply adjusted my diet. That has helped with the pain and the immediate urgency. I actually even went to the gym last night for my exercise class. I actually felt better afterwards, not that my symptoms were gone.

You know what the hardest thing in all of this is...giving up foods and drinks that I like...and doing this alone. I miss my husband so much more now.

[cjhsmith]

Thank you for your response. I am working on following the diet to the best of my abilities. It's hard to remember everything when it's time to eat dinner. It's also sad that I won't have some of my favorite foods.

[cjhsmith]

I pray that you are right that my symptoms will be better with proper treatment. It's just all so overwhelming. I have hard enough time in finding dates, so it's just one more thing to add the list. I am so happy that you have reached a place where you are able to get your life back. My husband struggled with health issues forever, so I know...Thank you for your response.

[Deirdre]

Oh honey (((((hug))))) It won't be THIS bad forever. It just won't. SO sorry.

[cjhsmith]

Oh honey (((((hug))))) It won't be THIS bad forever. It just won't. SO sorry.

Thanks for the hug! I pray that you are right! I didn't need one more set back. I was making so much progress....Everything just seems so impossible right now.