Feeling very pressured...

[kadi]

So many people want me to be well, it feels like a lot of pressure sometimes. My sister in law & I have kept our contact to short emails since the 3 page lecture episode several weeks ago... But I regretted even writing her that I was making a cake, because that turned into "if you're baking a cake-that's a good sign". Not really, I just wanted a CAKE I COULD EAT!!! I know she meant well, but I would really like a good sign too...

People who've driven me to my DMSO treatments are starting to ask, "Did they work?" and I feel like a failure because I don't have a great success story. (but i'm still hoping that i will get better after they're over)

Another person in my family keeps telling me she "doesn't know what to say" and I miss the closeness with her that I used to have.

If I have a good day or a good half-a-day, then other people want it to be forever, and so do I.
Is my old life gone forever? And how can I be okay with this?

[kelly McC]

Kadi,
I am so sorry. I know those same questions . There are many treatments available today and the good news is most find a treatment that works for them.
huggs and prayers,
Kelly

[kadi]

Yeah, I know, but at this point I've tried Atarax, Benadryl, Elmiron, DMSO cocktail, cysto/hydro, diet, Detrol LA, Levbid, Prelief, allergy testing, and had a laparoscopy to rule out endometriosis, and got ripped off by a fee-for-service doctor who is now under investigation by the medical board. Most of these things I couldn't tolerate and a few were just ineffective. What's left? I'm not bad enough for interstim or BCG thank God, but all the things I used to love to do are gone (wearing jeans, travelling internationally, eating in restaurants, hiking, swimming, eating my dad's cooking). I have done what I can to learn to cook, learn new indoor activities, gone for pastoral counseling, been hopeful, but I now feel like I'm drowning. I can't take most antidepressants, Elavil is the only one I can tolerate, but now that is making me want to eat all the time.

Elavil, Ditropan & the diet have helped some, but I'm still uncomfortable all the time.
Thank you for trying to encourage me, but I feel like I'm running out of options. The only thing really left is to go back on the birthcontrol pill I was on before I got sick. But after being sick for a year, is it too late? And will that even work? I've been hopeful with each new treatment & been disappointed.

[vm]

Kadi - I can't remember, have you tried any of the pain meds? I was trying to remember if you had, but had a bad reaction. Would your current uro be willing to try some if the last DMSO doesn't seem to help?

[steph4308]

Kadi, I know how you feel about being pressured. It's so hard to explain to others that just because you may be laughing or doing something productive you still feel like death warmed over. I feel guilty that I can't get better and make everyone feel comfortable again. It has helped to let my family read some of these posts of others who have the same disease.

But I can say I've been on the other side. While growing up my mom had migraines and menopause and I remember feeling very frustrated with her. I felt like she was putting a cramp in my style and couldn't she just pull herself out of it for her family. How very selfish this was of me!!! But who really knows until you've been there.

One thing this disease has taught me is empathy and tollerance for others with chronic illness.
only the best for you, Steph

[kelly McC]

How many installs have you had ? I do hope you find something that works for you. Do you have something for pain? I understand I did everything you mentioned and still go to numerous doctors but I am very hopeful.
kelly

[kadi]

I've had 6, have to decide today if I'll have a 7th. And that will finish it for awhile.
I don't really have pain like I used to. (Which is fortunate because I'm allergic to Percocet. Ultram & Vicodin give me migraines with vomiting. Darvocet is fine, but then I can't drive.)

Most days it's pressure, always feeling like I have to go...Occasionally it will spike up into pain, but not as much as it used to. Last night I wanted to sleep, but my bladder felt "awake". I don't know if that makes sense. I don't want to die, but don't want to live like this either. I called the doctor's office yesterday & left 2 messages, but they haven't returned my phone calls and I don't think they will.

[ICLori]

Hi, Kadi, (((HUGS))) I understand very much how you feel. I've also "failed" at everything, including Elavil and Pamelor, and am looking at Interstim or bladder removal at this point, and am on narcotic meds to stay comfortable.

No one wants to hear about your treatments, or how you are doing. They expect you to be "fine" all the time. They get tired of you being sick and want you to get back to "normal." It's very isolating, to be a chronic pain patient and to be sick all the time.

And it's normal to feel as if your life is over, because until there is a cure, our lives WON'T be exactly the same. They will be different lives. We can still create a good life for ourselves, especially with treatments that help us be more comfortable or meds, but we have to make concessions to our disease and this is a loss that needs to be mourned and recognized.

I think having relatives and friends who don't understand is just part of the disease, and maybe that means we have to make new friends, maybe friends who have an illness like ours and understand.

Blessings, Lori

[CareBear]

Hi Kadi,

I'm sorry to hear you're feeling this way. Its hard being a sick person in a healthy person world. Friends and often family don't understand, can't understand our everyday life. I feel fortunate that both my sisters also have chronic illnesses, so they have been supportive and have suggested treatments that have worked for them even though they don't have IC.

One of the suggestions that has worked really well for me is double antidepressant therapy. I take a low dose of Zoloft in the morning to help me with my waking hour pain and then 20-30mg. of Elavil at night. It has helped me greatly!!!!!! I also use Urimax for most breakthrough pain. I have gained some weight, but I feel good. So, its an OK trade-off for me. The Urimax is good because it relaxes the bladder and it has the ingredients to stop the burning.

I pretty much feel pressure or soreness all the time. I have learned to buy pants that are one size too big and that don't put added pressure on my bladder.

I know its hard when you feel isolated and pressured to feel good when you don't. Hang in there.

We are all here for you!!!!!!!!

Cari :dogrun:

[Dixiefireball]

i'm going to send you a pm that i found to be very useful in dealing with friends and family and found it helped me alot.
sending you hugs and prayers
B.T.W
I hope you find it just as useful
Rhonda

[PikkuMyy]

Hi Kadi,

I just wanted to chime in that I know exactly what you mean by your "bladder is awake". I sort of think of it as knowing I have a bladder. When I don't have symptoms, I never think about my bladder or physically, know where it is unless I have a full one. But when I'm flaring, it's like this little mother-in-law over my shoulder (no offense to MILs) nagging, "Here's your bladder! Don't forget your bladder! Did you talk to your bladder today?"

[Sarojini]

Yes, Kadi, I know what you mean by the bladder is "awake" too... I get that sensation very often as I lie down each night. It's a twinging, tingling, weird sensation that my bladder wants to void... and almost always I get up to go dribble pee several times before I can get comfortable. During flares, it's magnified and can be downright painful.

I also understand that pressure to feel better... I am sure my husband wants me to, but he doesn't pressure too much. It is the rest of the extended family... they all often seem to think the IC is going to go away for good soon, despite the fact they've been told it's chronic. I kind of avoid discussing it anymore with them... it's too bad.

I'm sorry you are feeling so down lately.... I hope things look up for you!! :grouphug:

[Cheryl529]

Hi Kadi, it sounds like your going through a ruff time right now in many ways. Please know I'm thinking of you. It's wonderful how many members are chimming in with support. You are not alone. Take things one day at a time. I hope things get better for you! :angel: