Some Doctors just don't get it!

[RAS6]

HI! :hi:
I am a newbie diagnosed with IC (officially) last week.
I am 24 and have 2 beautiful girls, ages 2 and 6 and a great husband as well.
I just scrolled down beyond the question and thereapies section of the messages and found this board! I am so excited to chat with other moms with IC.
One of the biggest problems I have had lately with doctors, clinicians, etc. whom I have been seeing for IC is that they aren't very mother friendly. My first Doctor told me to go home and rest for 2 months until his office could get me in for tests! Then he got upset that I wasn't able to drive 1 hour each way 2 x's a week to one of their offices to get bladder installments. Trying to explain how busy my life is was like talking to a brick wall! I am only working part time, but as a recent college grad have been attempting to find a full time job. My health issues have put that on hold. I am struggling to care for my little girls and my husband. He has been great, helping with dishes, laundry shopping, etc. on days I can hardly get off of the couch. The past few months have been so hard though, even with following the diet and taking pain meds, the pain is unrelenting!

Finally I was able to see the head Doctor at the practice and he came right out and asked if I was fed up! It was such a breath of fresh air! I started on Elmiron and am going in for hydrodistension under general anesthesia on friday. If that doesn't bring some relief or it is short lived, he has lots of routes to follow including different drugs, Pelvic floor therapy, and posible interstim. Oh, he told me to bring my 2 year old to the thereapies because I can't find a sitter on my appointment days!

Well, even if some Doctor's don't understand, my very smart children are practically psychic! My 6 year old can tell just by looking at me if I hurt and she is my "Diet Police". She will not let me eat foods I am not supposed to!!
Even my 2 year old understands when I am not feeling well. Yesterday after work I lay down on the sofa and she ran and got my "hot pack" as she calls it. It was soo cute!
Sorry for the long post, just needed to vent and then celebrate about the new Doctor's attitude!
Hope to get to know you all!
-Rachel

[ICLori]

I'm sorry for what you went through with the other doctors, but I'm glad you got a doctor who is willing to help you and work with what your schedule is!

I hope that you get long-lasting relief from the hydrodistention, and also that the Elmiron will work for you.

Hopefully it won't be long before you are back to your old self and ready to pursue a career! Congrats on being a recent college grad, by the way! :)

Blessings,
Lori

[dg2901]

Finding/having a Dr who you "click" with makes a difference. You're fortunate to have found that Dr so early on in your search..:)
Hopefully this Dr will be able to help you find a treatment option soon. Remember though, this is probably going to be a trial and error process, so patience is going to be your best friend. :)

Congrats on the college degree! :woohoo:
Take care, dear
diana

[**Angie**]

I have 2 of them too!! My daughter is 11 and my son is 14. A few years ago, at Halloween, I really wanted this very tiny small pkg. of M & M's--my son and I had an all out tug-of-war with them. :) Him telling me it's not worth it because I'm not nice when I don't feel good. Well if that doesn't stop you from cheating I don't know what will!! Gotta love them!!!
angie

[RAS6]

Sorry for taking so long to get back! My hydrodistention was friday and I needed to stay in bed yesterday. I feel gross, but not as bad as I had anticipated. Plus everything went without any complications, so I can't complain. It's nice to talk to other moms who have been through this. There are days I feel like I am failing my girls and my husband, but they are not as concerned with missed family gatherings and lots of dirty dishes as I am! If nothing else, having IC has taught me to take time to care for ME, and to realize I can not control everything!! Plus with all the time I have spent on the coach these past few months, my 6 year old daughter has had lots of practice reading to me and she is definately getting better at it every day! She has mild developmental and social delays, so reading even simple sentences is a HUGE deal now!

Hope to talk to everyone soon!
-Rachel
:)

[Claredale]

Regarding the diet police. Whenever the wonderful girl scout cookies sales start, my husband has to watch me like a hawk. My excuse of just helping them since I remembered what it was like to be selling those cookies doesn't work anymore. My favorite are the thin mints!!!! I keep telling him that I am going to go get my "fix" at the corner. That is always a HUGE challenge for me!!!!

[pixienohio]

Rachel,
I'm so happy to hear you found a great doctor. I was diganosed with IC in 2002. I'm still trying to find a doctor that knows something. I have a 10 year old daughter and an 8 year old daughter and it's not easy to tell them that Mommy can't take them here or there because she isn't feeling well. I was in the ER last night with extreme pain from a flare. I was told I was a drug seeker and the level of pain meds in my blood was extremely high. HELLO, I'm prescribed pain meds. and they weren't working and like a crazy person I went to the ER. :cussing: Well never again. I will only be in that hospital again in a body bag. The doctors and nurses there have the bed side manner of wart hogs.

[RAS6]

I understand how it is to have people treat you like a drug addict when you are in HORIBLE pain! After my first visit to the Urologist the Physician's assistatnt I saw tried to send me hojme with pain meds, but I refused. I have to be REALLY hurting to take anything stronger than a tylenol. But when I couldn't get the proced he prescribed b/c my insurance won't cover it and even when STRICTLY following the diet, ibroke down three weeks later and called to ask for pain meds b/c I was worried I would have to quit my job b/c I was in so much pain. Then the Doctor gave me a really hard time, he said I needed the diagnosis first, but wouldn't move up my appointments which were 6 weeks away. He was the one who offered the medicine in the first place! Finally I was able to see the head doctor, get a diagnosis and get some real help and results. But it took so much out of me. I missed alot of work, and even more importantly, I missed out on alot of family time this summer. we put off a camping trip among many other things b/c I was unrinating every 30-45 minutes during the day and every hour at night. (that would have been fun walking through a campground from our site with a flashlight)
Again, I can really relate. I just hope we can all find ways to go into remission and enjoy our lives again soon!
-Rachel

[Claredale]

We all know how you feel. That is why it was such a shock for me to go from my wonderful doctor that had no choice but to move to a doctor that I really can't get comfortable with. I don't cry easily and I have always had a high pain threshold. I had 2 babies natural. One was 36 hours and the other 10 hours labor. Like all of us on this site, we are just looking for a way to make our life as normal as possible and go on. It does really hurt me that I am made to feel like I am a drug seeker. I know that there are people that dress professionally, blah, blah, and we hear that they are dependant on drugs. But honestly I don't drink, don't smoke, try to have a social life and be a productive person. Even when my mom (who is a nurse) was concerned and went with me to my doctor's appt just because she wanted to understand was told that such a small percentage of people actually drug seekers. This disease is very consuming and that she had only seen such a small percentage of people become dependant. Their only depenance is to not hurt!!! It is already hard enough to deal with the huge life changes that we are experiencing. A loratab doesn't make me go out and have a good time believe me.... It just gets me out of bed (most of the time) and function like most people take for granted.

Since I have changed doctors and I don't get the amount of pain meds nor refills like I used to. I am keeping a journal of all the times and types of meds and my pain level at the time just so I can see for myself even if the doctor doesn't want to look over it. At least I can tell when I need the pain meds and the soma, etc the most. I am even writing in this journal at night. When my husband looks over it, he can't believe that I am doing this much work. I am even measuring my output like I did before I got my implant.

I am in a mild flare today and so I am very gabby and jittery today. I am going back to my doctor on October 17. Please pray that I will not be a cry baby and let him know that I am trying to control at least my health in the only way I can.

Thanks for the ears!!!

[RAS6]

No problem! I have been venting so much, it's nice to get a chance to listen to someone else! I will be praying for you when you go back to the Doc.
I know what you mean about taking one painpill to get out of bed, go to work, or spend real time with my kids not exactly being the same as going on a pill binged night on the town! I am the girl who hates taking tylenol! But the 1st doctor never took the time to learn that about me!
I haven't been doing pain journals yet (hopefully it won't come to that to convince this Doctor to help me) but I do a voiding journal two days before I go back to the Doctor every time so I feel I am accurately describing my symptoms. My husband thinks I need to get a hobby besides being sick, but I don't think he understands that b/c this is so new to me and often so dibilitating, I have to do something, if only to maintain some sort of semblence of control over my life; know what I mean? Doing something, even if it is counting how many time I pee every day right before a Doctor's appointment, helps me feel on top of this and still a little sane!
Good luck!
-Rachel

[Claredale]

My husband is understanding most of the time. It's just we were looking so forward to being empty-nesters since we really didn't have time since we were young parents and now that both boys are gone away to college, here I am never knowing when to plan something. There are times that he will say something about me being in my pajama pants and t-shirt all wrapped up when he gets home from work. "I guess we aren't going anywhere tonight". He doesn't mean to hurt my feelings, but since I am so sensitive about it, it sometimes" We really have a lot of friends and active with church, etc., but lately he feels that he has been having to do alot on his on. We went out to eat for his mother's birthday last week. I was in a major flare. My MIL doesn't want to even understand IC and only thinks that "am sick" when I want to be. We went out to eat which is really a big deal for me! My older son came in from Starkville and i just didn't want to miss another family event. I was in so much pain I was sick to my stomach. While we were sitting at the table I was just shaking. My FIL was going to go to the car and get his jacket, but my husband told him that I was in pain. He told his mother (thank God) that he wanted me to stay home, but I didn't want to miss it. I ate 1 roll. I went potty about 10 times. If I even smell cigarette smoke, I go into a flare.

The worst thing for us is planning weekend getaways. The closer it gets I either stress myself out or something but I start with the flares. We actually did go on a church retreat last month and I had a great time. I had a little spasms at night, but I wasn't clinching my hands and shaking my leg. That is definitely when my hubby knows that I am hurting and just trying to hide it.

[pixienohio]

My urologist has given up on me. He says he has tried everything and even though everything doesn't work for everyone he can't help me anymore.:rant: He won't return my calls and won't set up an appointment with me. I went to the Cleveland Clinic for pain management and they sent me to an urologist up there. He won't do anything for me. He wants me to get that interstim but hasn't let me know anything about it. I'm so fed up with all this that I just want to give up. I've lost numberous jobs and take percocet just to function in the morning. It doesn't take all the pain away but it does take some of the edge off.

[Claredale]

What clinic were your going to. I looked up one on this site. I copied the info. Is this the one that you have been working with?
Cleveland Clinic Foundation, Glickman Urological Institute
Glickman Urological Institute, Desk A100, 9500 Euclid Ave., Cleveland, OH 44106 - Phone: (216) 445-4757

[pixienohio]

That's the one I go too. I called today and they said that they are still working on the interstim and there isn't anything else they can do for me. I give up!

[Claredale]

The Glickman Urological Institute is considered one of the best urology clinics in the United States and was rated the #2 Urology Clinic in the USA by the US News & World Reports America's Best Hospitals. Well-known clinician and researcher, Raymond Rackley, MD , is on staff.

Sounds like a bunch of >>>>>

It did take my doctor quite a while to get the interstim approved. I had to go through physcial therapy, and all kinds of time consuming stuff just so my insurance would approve it. Is he not giving you any pain meds are anything?
That is pretty much how I am surviving now when I am having my flares. The interstim really doesn't help with pain. The first one I had did, but since it got infected, they put a new one in my left butt check and it just isn't working as well. Most the time I have it turned off since the pulsing sensation gets on my nerves.