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Living with a Chronic, incurable condition.

CallingAllAngels

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CallingAllAngels Contributor

CallingAllAngels

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hey hun - i am really sorry. i don't know much about your condition, but i think you should see what the specialists have to say. maybe they know a new experimental treatment they can do on you. i am so sorry. please hang in here. lots of people love you, and we would never want to see you go anywhere.

 

Oh Annie....you brought tears to my eyes.

The suffering is horrible. I would not wish it on my worst enemy.

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CallingAllAngels Contributor

CallingAllAngels

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oh sweetie, i am really really sorry. lots of people care about and love you and we all want to see you get healthy. i feel bad that you are going through such a harsh illness. has the medication you've started worked even a little bit?

 

There is NO cure, and NO treatment that works for one person. I will be seeing an expert in March if I can hold out that long.

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CallingAllAngels Contributor

CallingAllAngels

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Hey Allie how are you holding up hun? Good news that you are going to see leading specialist in this area soon. I really hope and pray he can help you

 

I am now losing the ability to urinate "at will". Sorry if this is TMI, but I sit down "to go" and nothing comes out. It's MADDENING.......it's killing me.

 

I see my Uro in an hour...I know he will have nothing to offer.

 

My worst fears may come true...I may have to learn how to self-catheterize myself.

 

Pray that I don't. I don't have the mental tenacity for it......

 

I am devestated beyond what words can say.......

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CallingAllAngels Contributor

CallingAllAngels

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This disease is killing me....I have been up since 1:30am....another sleepless night.

 

It's starting to affect my memory...I watch TV shows that my BF says we've already seen, but they are new to me. He will tell me what happens in the next scene, and he's right, but I have no recollection of it......some days I don't even remember if I talked to my parent's or not......

 

I am so sleep deprived today that I am actually feel sick to my stomach.

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CallingAllAngels Contributor

CallingAllAngels

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ugh. sorry. if it consoles you any, i have a bad memory at times, i don't remember what i watched on TV myself. it sounds like the lack of sleep is getting to you.

 

how did the appointment with the uro go?

 

My Uro is at a loss, so I will be going to see an IC specialist in March. But he is a 5 hour drive from me, so I will have to be Catheterized for the trip down. (My dad, God Bless him, is taking me, because he says he will NOT rest until we find resolution.)

 

I don't know what he can do, and of course, I can't keep traveling 5 hours every time I need a treatment, but to see a specialist in this condition is a bit promising.......

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tiredofvampires Proficient

tiredofvampires

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I have been seeing a uro for my VV, Allie...only recently, since he is familiar with both of them (IC and VV), as cousin conditions. Yours is in the bladder, mine is in the tissue outside, that's basically the only difference. Although he said that there is MUCH more known about yours, and that it's a "real diagnosis", whereas mine is much less researched and it's more of an orphan diagnosis.

 

So keep your chin up -- every day they are studying this disease and learning more about it.

He said that IC is "one of the most horrible diseases I've ever seen." And as a doctor/surgeon who has seen everything in med school...that tells you a lot.

 

So Ghost is right. You are TOUGH. As nails.

 

I told him that I had a friend (you) whose uro would not put her on Atarax because it causes urine retention. His reaction was "What??? I give that to my patients all the time." This is not a gyn, this is a URO who is treating IC. I feel he's extremely competent and up on the latest research -- he's even a professor at the university.

 

This is a neuropathic pain disorder, where the nerves secrete irritating chemicals, and also, there are irritating chemicals that are secreted in the body that cause the nerves to get inflamed. So it goes both ways.

 

But one of the HUGE players in this is histamine. You need to talk to the doctor(s) about getting you on an antihistimine asap, and/or a mast cell inhibitor (which blocks the release of histamine.) I am on daily Claritin (an antihistimine) now (I couldn't deal with the drowsy effects of Atarax) and Singulair (a mast cell inhibitor), to cut histamine response in the tissues, with both modes. It's made a noticeable difference.

 

Atarax might help you sleep, too. If not Atarax, some other antihistimine -- there are many of them, and I can't believe that ALL of them would cause retention. And I know that's a huge problem for you, but I just wanted to tell you that my own uro did not say he's seen urine retention with Atarax. But you may be able to use another type of med like it anyway. I think this is important, since histimine plays such a key role.

 

I'm so glad you're getting to see the VIP doctor!! Thank god for parents...I would be gone without my mom and sister right now.

 

Is there anything they can give you for sleep that will just knock you out cold? I know personally how sleep lack/loss makes you feel brain damaged. All the things people just take for granted...

 

My heart goes out to you. KEEP FIGHTING, WOMAN!!!

 

(((((HUGS))))))

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CallingAllAngels Contributor

CallingAllAngels

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TOV......I LOVE you for all your informartton, and support.

 

I asked my Uro to Atarax....his response "it won't help you" Why, I do not know.

 

I know that I can take NO narcotics, as they put me in urinary retention. And, I have CHRONIC neck and shouulder pain, that is just made worse by this situatuion, as I have to LEAN on them to urine (TMI)

 

So, I get NO relief from any pain meds, or DMWO (I have had 6) treatments the Dr. gives.

 

I am so sorry for your continued suffering, and appreciatetive o f your continued support my love.........

 

Love,

 

Allie

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tiredofvampires Proficient

tiredofvampires

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Hun, I don't take narcotics either, and never will. It'll mess me up too much.

 

Definitely try to get another opinion though on the antihistimines. They are low profile for side effects and most certainly CAN help. This is an emerging illness and different docs will have different treatment ideas, so keep trying things and leads, and get a doc who will try you on something if there's no consensus about it (and for sure, my doc said it DOES help IC.)

 

I'm so sorry the DMSO isn't helping!!

 

Thank you for your support and kind words, too!!

 

Love you!

ToV

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CallingAllAngels Contributor

CallingAllAngels

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Hun, I don't take narcotics either, and never will. It'll mess me up too much.

 

Definitely try to get another opinion though on the antihistimines. They are low profile for side effects and most certainly CAN help. This is an emerging illness and different docs will have different treatment ideas, so keep trying things and leads, and get a doc who will try you on something if there's no consensus about it (and for sure, my doc said it DOES help IC.)

 

I'm so sorry the DMSO isn't helping!!

 

Thank you for your support and kind words, too!!

 

Love you!

ToV

 

Unfortunately, all 4 Hosptials where I lived MERGED their Urology Deparments into this one HUGE organization, where my Uro is. AND ONCE YOU GET A URO, YOU CANNOT, AND I WILL REPEAT, CANNOT SWITCH WITHIN THE PRACTICE, because I have ASKED to see another Dr., and was told "you cannot switch within the practice." I had an emergency appt once where my Dr. was not available, and I even asked THAT Dr. if I could switch, and he too said "No...you cannot switch within the practice." What, is this some "fraternal order" of Urologists????? There are about 40 Uro's where I go.

 

To say that this is NOT in the best interest of the Patient is an UNDERSTATEMENT, but I am at a LOSS to really GO anywhere else, because any other "Uro" is NOT going to be as good...they will probably just be some Uro who practices just "general" urology and does not know much about IC. I, by the "UNLUCK" of the draw, got a real ass h@le for a Urologist. He is arrogant, doesn't listen, is very dismissive, and when I tell him what's wrong with me, he tells me I'm "wrong"........?????

 

I dislike him MORE than I can ever say, but I am STUCK. When I go to see the Specialist in Long Island, HE is going to put together a treatment plan that MY Uro WILL follow. I have been seeing this @ss h@ole for 4 months, and I am NO BETTER 4 months later. C'mon now...what's up with that?

 

Maybe I should see some little "Po-Dunk" Doctor...maybe they would have another point of view.

 

After I see the Specialist and see what he has to say, if my Dr. is NOT willing to work with him locally, I'M DONE...HE'S FIRED. And I'll move on.

 

I'd walk into Hell and back to be RID of this. I wouldn't wish IC on the devil himself.........

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CallingAllAngels Contributor

CallingAllAngels

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Yes another sleepless night. I am so sleep deprived, that I am actually losing my short term memory. It's a scarey thing when you're watching TV and your boyfriend says "we just saw this episode last week, don't you remember?" And...you honestly don't.

 

It's sad when you can't remember if you talked to your parent's or not.

 

It's annoying to other people when you tell them the same thing over and over and over again because you don't remember telling them the first time.

 

AND...I took some Percocet in the HOPES of getting some pain relief from my back, and I am now AGAIN going into Urinary Retention. It happens every time I take it. So why do I keep doing this? Why do I expect different results?

 

I'm just looking for relief from pain that, apparently, is never going away.

 

So...at some point today I am sure I will end up either in the ER, or in my Dr's office to be Catheterized.

 

It's sad when it's a beautiful sunny day and spring is on the way, but it matters not because you don't have your health.

 

If you don't have your health, you have nothing.

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CallingAllAngels Contributor

CallingAllAngels

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Can't you join any fora with people in a similar situation ?

 

Unfortunately, since this illness is SO rare, there ARE no support groups in my area. Only one I found on line...similiar to this one, but with fewer members. Also, it's VERY discouraging to read story after story of how NOTHING works for anyone, so, I try to keep posting here, where I get much better and more positive feed back......

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Nixee Enthusiast

Nixee

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Allie I just want to give you a big ***HUG***

 

I can't give additional info like ToV... I just wish so much for an answer for you, for some relief.

 

You are very strong. I know you are going through a lot of pain and frustration and that is a huge understatement, but I have to hold out faith for you that things will improve. I hope you can have the same faith... because it is important.

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Ellie2006 Mentor

Ellie2006

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So what are they saying? That you cant even get a second opinion from a doctor at that hospital? When you let them know that you are NOT satisfied with your doctor, what did they say? If you cant see another doctor from the same hospital, who do they recommend that you see? Ugh, it must be so frustrating for you. I dont see why they can't be more accommodating to those already in pain! So sorry to hear of this CAA.

 

 

I am glad that you have a doctor, a specialist no less, willing to work WITH you in Long Island.

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CallingAllAngels Contributor

CallingAllAngels

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Allie I just want to give you a big ***HUG***

 

I can't give additional info like ToV... I just wish so much for an answer for you, for some relief.

 

You are very strong. I know you are going through a lot of pain and frustration and that is a huge understatement, but I have to hold out faith for you that things will improve. I hope you can have the same faith... because it is important.

 

THANK YOU so much. I am holding on to Faith....it's all I have right now. What Man cannot do I pray God will....

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