My Journey while living with Interstitial Cystitis

Time Flies

2011-05-15T19:25:00.000-04:00

I can't believe it's already the middle of May!
I was just thinking tonight while doing my dishes I can't remember the last time I had a full blown IC attack. I guess that's a good thing especially since the Bactram is causing problems...either my stomach or that darn yeast...but it must be doing it's job along with the Elmiron.
I can still say I do mess up and drink the occasional "bad for me" drinks, but MODERATION is the key.
I feel great and can't wait for my summer to begin. Big plans this summer starting on June 4th! Yes some of it involves wineries...but the big one involves the big Birthday in Key West...if everything goes as scheduled!
The weather is getting warmer, the depression seems to be lifting as the sun shines on us more often now.

Great 3 Month Checkup!

2011-02-02T20:19:00.002-05:00

So I saw Gina the other day and I'm feeling good, am handling things well, I know my symptoms and how to stop them...an overall great appointment. Think about it, last year I was doing the "Cocktail" into January and having too many "bad days". Now I know that every day gets better! I still have to stay on the Bactrum for a while longer as there is still a trace of infection going on. I told her how my GYN was not too happy about me being on this particular antibiotic as they now use it for MRSA Infections...but this one seems to be doing the job.
So now I graduate to 6 months and I'll keep my fingers crossed that these next 6 months go as well as the last 3 have!
I know I don't stay 100% away from the "forbidden" food/drink list, but I also don't overdo it. I bought the Javacid for my coffee and I gotta tell ya, it really helps! I can honeltly say I don't keep up with my PT exercises either, but I make it a point to get them in at least once a week...they do help!
When I start getting the irritating symptoms, I put on the Stim and find a quiet place to RELAX! I think overall the most important thing is to JUST RELAX!
So for those of you out there reading this and aren't feeling your best I can tell you that it gets better!
I may not be the "Model Patient" but I'm doing what works for me and if it doesn't work, I rethink my actions.
Find what works for you and go with it!
All the Best!

2011-01-01T18:24:00.002-05:00

Happy New Year!
Things have been going good (still knocking on wood though)
I'm still taking antibiotics which are reaking havic with my stomach and giving me other problems. I'm looking into taking Acidopholis to help with it.
I've been very good as far as my diet is concerned and actually am looking to lose some weight. And I will say...I have to admit that I've done a few wine tours and took precautions that kept me from having problems.
Attitude I believe is a big part of keeping this monster under control.
So Happy New Year to all and let's hope it's a symptom free one!

Just Breathe Widget

2010-10-12T19:59:00.000-04:00

Just Breathe Widget

Something I never realized!

2010-09-08T19:59:00.002-04:00

As I was reading Gloria's blog about Micturition or OAB: Should you be taking Detrol? I realized that my infection problem may be due to a question she asks..."Why would an IC patient who doesn't not have leakage want to keep contaminated urine that has too many white blood cells in their inflamed, irritated bladder."
I've been taking Vesicare and honestly, maybe I should not take it for a while and see if things change...that in addition to the cost factor may have just made up my mind to stop!
Thanks to Gloria for making me see something that may be a solution to my problem!

Where did the summer go?

2010-09-05T10:46:00.002-04:00

Can you believe it's September already? I certainly can't.
It's actually been a great summer with very little complications as far as my IC is concerned. And of course after my last post, I ended up with another infection and Gina put me back on Bactrim...I'm suppose to be going once a month from June to do my urine cultures but with my new job, I've been missing getting to the lab before they close. I've managed to get one in and since I have to go in a few weeks to see Gina again, why bother going this coming week.
I've missed the NY State Fair for the second year in a row...it does bum me out, but I'm being realistic in that I don't have the money to spend this year. Oh well, there's always next year to look forward to :)
I'm going to my new favorite winery next weekend with my buddy Josie...3 Brothers http://3brotherswinery.com/index.php?option=com_content&task=view&id=1&Itemid=2
it's for her birthday celebration and we plan on spending the day at Bagg Dare Winery having some food and listening to a band.
I can honestly say if I know I'm going to "taste" I do take it easy. I can't afford to end up having a flair because I decided to be stupid and not think of the consequences of drinking too much wine. I take my Prelief before and limit my intake even though there's many good wines to taste.
With Fall coming there won't be many more trips planned. Old Forge is planned for October, I've never been there and there's this Hardware store that sells all kinds of goodies-it's like an old "General Store" so that will be fun and I have to hit the Life Is Good Store there in town. We may even hop a ride on the Adirondak Train to see the foliage.
My job is going well, no stress, some frustration...which is given when you are learning something new that you have really never done before. I will say Medicaid payments will be the death of me!
Enjoy those last few days of "summer"

Feelin Great!

2010-08-02T18:49:00.002-04:00

So alot has gone on.
I started my new job at the end of June and I LOVE IT...no stress, no games!!!
I decided to try CystoProtek and I can honestly say I think it's helping. I have no symptoms, and I'm feeling great! Haven't had a major flair since my vacation.
I did have a slight problem that was self induced...Being a huge fan of Finger lakes Wineries, I went to FL Winefest with the girls for my second year in a row-I stopped and then thought I could do a couple more tastings and those couple more put me over the edge. But I was fully prepared in case something went wrong.
and...surprisingly enough I celebrated my 39Th birthday last week with 3 very tasty Margarita's with Prelief appetizer :)
I only over-indulge every once in a while-I believe you cannot give up the things you like and love, just enjoy them less. I may not be a great role model for anyone with IC, but I know that for myself I have finally gotten control for now and if I decide to indulge-it cannot be in excess and I have to be prepared for what ever happens, flair or not.
This summer has flown by, I can't believe it's actually almost over. I still have places to go, pictures to take, and people to catch up with.
Even so, I've been taking the time to enjoy the things I love with the people I love to do them with and it's been a relaxing, non-stressful, happy time...
That's what makes it all the more great!

Some good news for once

2010-06-24T13:11:00.000-04:00

Had my 3 month appointment today with Gina at Urology and for once there was no infection...but that could be because while visiting my "un-biological" sister and her family I had one. Thank goodness I had the sense to take my whole bottle of amoxacilin with me so I could get rid of it. Even though I used an OTC Test strip, I may not have really suffered an infection, but I have learned the difference between a flair and an infection.
I was getting to the point where I thought every time my boyfriend and I would have sex-I'd end up with another infection...it got to be draining on my physically & mentally...I'm not saying that my string of infections is over, but there is light at the end of the tunnel now that puts me at ease for the time being.
I just want to know why when one thing finally works (the bladder installations) another problem pops up...I just want to know why I've been getting infections and how I can prevent them.
So the plan is urine cultures once a month for the next 3 months, a follow up visit with Gina in 3 months, continue taking the amoxacilin at bedtime and using my Estrace Cream once a week.
I start a new job on Monday and hopefully don't have any harsh setbacks until I am out of training (which is for 3 months) and I get myself established with my new employer-my thoughts are to keep myself feeling well and be more positive...
Let's just hope it works!

Time-does it really heal?

2010-06-14T20:30:00.000-04:00

I know, it's been a while since my last post...I've completed a temp job that was for 2 months and now am getting ready to go spend a week with my best friend and family before I start my new job.
I had another infection and Gina put me on Amoxacillin now-one a day at bedtime...I don't understand why I keep getting infections! It seems that every time I start to feel great and can do anything, something has to bring me down.

IC Event

2010-05-06T20:44:00.000-04:00

“Finding Better Relief: Working with an IC Healthcare Team” on June 5, 2010 in Nashville, TN.

The event will also be webcast live so if you don’t live in the Nashville area you can still tune in and participate online and even pose questions to the presenters.

Registration and more information: http://www.ichelp.org/Page.aspx?pid=771

Peace...

2010-04-15T21:45:00.002-04:00

I feel great!
I ended my 4 times a day antibiotics on Friday and have been taking my bedtime dose like a "good girl" religiously
The temp job is going good (even though their computer programs are absolutely terrible...I don't know how anyone can stay awake while the dumb thing keeps timing out...but I'm there to get a project done and that's what I will do) it is messing with my lower back - a trip to the chiropractor fixed it yesterday and today when I went in for PT, Jeanne told me to do my "push-ups" more often until my back gets used to sitting in an upright straight position again...It's almost been a year (April 28th) since I last worked in an office...heck, since I last worked!
But my muscles are good-PT was short and sweet this afternoon! Jeanne let me "graduate" again!!!

2010-04-05T09:53:00.001-04:00

Well, it's been 1 week on the new antibiotics and I can finally say I feel normal again!

I was telling my parents on Easter that it seems that this is the worst I have ever felt since being diagnosed with IC.

I get the IC under control with the installations then infections decide to bring me down...it 's like I'm damned if I do and I'm damned if I don't...but I HAVE to move forward...

I start a new job tomorrow and I need to be in the mind set that I'm going to be ok!!!

I was right!

2010-03-30T11:22:00.001-04:00

I knew it and for once I was actually right!

I have another infection and it just is killing me! There's nothing worse than the burning and stinging feeling I've been putting up with since Saturday morning...but I can't let it get me down and won't-even though I want to stay in bed curled up in that perfect position where it doesn't hurt anymore.

So this morning I went to my scheduled appointment with Gina and she decided to put me on a 4X a day dose of Macrodantin for 10 days instead of the Bactrum. And...then I have to take it once a day indefinitely.
I think this is the first time I could decipher the difference between my IC and an infection (pat myself on the back)

I will say when there isn't an infection lingering in there, I have felt great~like a real human being again and Life Is Good...but when stuff like this happens...well I don't want to do anything, go anywhere, see anyone...I'm sure a lot of people can relate to this.

Another?

2010-03-27T09:43:00.000-04:00

So physical therapy has been going great! We've been concentrating on that superficial pelvic muscle which seems to be my problem spot.
But...Thursday night something started again...

I think I have another UTI...all of the symptoms add up. I have some antibiotics so instead of going to Urgent Care and dealing with physicians that do not know my history I'll take the ones I have and try to wait it out until Tuesday morning when I go in for my follow-up with Gina.

Hopefully my plan will help some as I have an interview on Monday afternoon! My 3rd one in a week!!! And on top of it, I have laryngitis!!!

So stay tuned, Tuesday will be here sooner than we know!

Have a great weekend!

Very perplexing

2010-03-09T21:23:00.000-05:00

The first week of PT went great! I felt much better and my symptoms were almost non-existent. The second week (last week) it didn't seem to help as much so my therapist had me place the electrodes in a different spot to see if it could help more. Well Friday I decided that since I was still symptomatic, I needed to call Gina...
The triage nurse called in "cocktail" Rx to my pharmacy in case it would be decided to do another series of installations.
Saturday, Sunday, Monday and today my symptoms are again non-existent...go figure since I went to see Gina today!
But it seems I do have some kind of infection so I am on Bactram for 10 days and she upped my Elmiron to 3 times a day and if needed take it 4 times.
She also said to stick with PT for now

I go back to see Gina at the end of the month to see how things progress :)

My Ah-ha moment

2010-02-27T20:15:00.000-05:00

So this past Monday I decided that maybe my problem could be muscles...
I was using my muscle stim and it seemed to help, so I decided to call and make an appointment to get in to see my therapist...
I have to tell you...it has helped so much!
I feel almost back to "normal" again after going twice this week...

It's amazing how your mood lifts when you feel better!

Post treatment

2010-02-01T11:47:00.000-05:00

Well, I had 10 days of no symptoms!

I managed to survive a bus trip to the wineries at the end of Janurary without any problems and or symptoms and a few nights of warming up with my much loved Manhattan's...I know that I cannot consume alcohol on a daily basis without "paying the consequences" and I also know and practice making sure I drink enough water in addition to drinking "triggers".

You shouldn't have to deprive yourself of the things in life that you enjoy. But knowing that at anytime my IC will be triggered and I may eventually have a flair, I know that everything in moderation is how I can prolong the inevitable.

Or so that's what I thought until it snuck back up on me little by little...making it's presence known, and eventually it wasn't just a little "pinch" anymore...the discomfort came back and I was back to denying myself of things that make me happy. And trust me, I crave my coffee, I can't give up my chocolate, and I deserve a glass of wine or a good drink once in a while-doesn't everyone?

Today I'm feeling the worst that I have since before my treatment. All I wanted to do is stay in bed all day-but that's letting this "thing" take over my life...so I jumped in a hot shower and finally got out of bed. I've been keeping track of how I am doing in a notebook and when I realized I only had 10 days with absolutely NO symptoms, I almost cried.

Maybe I overindulged too much??? Maybe being depressed isn't helping??? Or maybe this monster that has taken over my bladder hates me and doesn't want me to go back to having a normal life...Yes, I called it a monster because that is what it is! Monsters don't go away and don't show any compassion. I've had enough problems over the years and although I have managed to get rid of one of the major monsters in my life, another has taken over...Why???

I've lived with a disability all my life that I've made plenty of sacrafices and adjustments for and now I have an additional one, a bigger one, that makes me not want to do anything, see anyone or even just live life. I'm trying to find a new job as I've been out of work for almost a year now and how will this monster affect my job performance?

I'm angry, I'm sad, I'm depressed...I honestly wanted my 6 weeks of treatment to at least give me more than just a measly 10 days of relief. Is that too much to ask?

Week 6, my last of a series of bladder installations

2010-01-20T17:07:00.000-05:00

Well, today I finished my 6 week series of bladder installations...but my story starts back in June of 2007.

I thought it was just another UTI, I went to my GYN for treatment and was put on the usual antibiotics, but this UTI never went away-I would return to my GYN office 4 more times until it was decided that I needed a sonogram and a CT Scan to see what the problem may be.

It was shown that my right ovarie was pressing on my bladder.

After some serious discussion with my GYN and my history of my "female problems" he sent me to a specialist to have a consultation for a hysterectomy which I had wanted since my late 20's.

In the meantime, while waiting for my surgery date, I was at the mercy of my bladder...some days I would feel great and some days, more than others, the pain was excrutiating. I would go to work, thank god for flex schedules, and come home to curl up in a ball on my bed to relieve the pain I was feeling.

My hysterectomy was performed on Nov 1st 2007...the best thing that ever happened to me...or so I thought...

Two weeks post surgery, I again had symptoms of a UTI-back to the doctor's office to see what was going on. The tests came back saying I did have one so he put me on Pyridium Plus...symptoms went away...for a couple more weeks that is. At my last post-surgical follow up, we discussed going to see a Urologist to find out what was going on since everything else seemed to be normal considering my circumstances.

I took that referral and went to the Urology office as discussed and started a whole series of testing...again...uggh!!!

The first person I was scheduled to see was Patricia Szymanowski; a Nurse Practicioner who specialized in Overactive Bladder Syndrome...she put me thru URODYNAMICS - CYSTOMETROGRAM (measuring bladder capacity by filling it with water and measuring the pressure as water is instilled and expelled) and diagnosed me with OAB...that is until my appointment with my doctor, Dr Elan Salzhauer.

I had a cystoscopy and as soon as he could see in my bladder, the answer was there! The cystoscopy coupled with the history of urgency, frequency and pain made my diagnosis to be Interstitial Cystitis.

I was put on Elmiron, 3 times a day and Vesicare and told to modify my diet as certain foods and beverages may be irritating my bladder.

First treatment, April 2008...HYDRODISTENTION of the bladder (putting water into the bladder to stretch it) Four weeks post hydro, I had my follow-up with Dr Salzhauer and told him I had been feeling great, as if I was virtually symptom free...He was estatic!

Well, I had about 2 months of relief from this.

For future appointments Dr Salzhauer set me up with Gina Brothers R.N. N.P who specializes in Interstitial Cystitis treatments. At first we kept with the treatment of the Elmiron and monitered my diet. When symptoms started worstening and the flairs became more frequent, she decided to send me for physical therapy for Pelvic Floor Pain.

At first I was a little apprehensive about having physical therapy for my pelvic muscles, but my therapist, Jeanine was wonderful. She has treated many a patient with pelvic floor pain and did everything possible to make me feel comfortable. With time, my pelvic muscles loosened up and helped when I was in a flair.

She also decided to get me a Tens Unit to use as much as needed to also help when I was in a flair-I love my tens unit!

This past November my flairs seemed to be getting worse so Gina and I decided it was time to do the Bladder Installations. It's an interesting mix of medications: Gentamicin, Heparin, Kenalog, Lidocaine, and Sodium Bicarbonate that are injected into the bladder thru a catheter. She told me they call her "The Mad Scientist" when she mixes the "cocktail" up for her patients.

I started my first "cocktail" one week before Christmas. Gina supervised 2 of the nurses who were going to administer the installations for my treatment. It was a bit comical for the first one, I was a bit tense since Gina told me that the Lidocaine may sting going in, so the "cocktail" wasn't going in very easily, and it turned out, it didn't even sting going in!

I had to sit for 40 minutes after to make sure I could void after otherwise they would have to insert the catheter again to empty my bladder for me.

On my way home that day, I started feeling the stinging and thought I was going to wet my pants on my 5 minute drive home-but I made it home and dealt with the pain for most of the day-not thinking that I could have taken my Pyridium to lessen the pain instead of waiting until bedtime to take my Lortab. Which by the way I didn't even think to start taking until treatment #4 when I had a lot of pain and frequency.

After my first day of treatment I noticed that my symptoms were rarely there and I did indeed start feeling better, but wasn't going to test it just yet.

Treatment #2 I said was going to be the official test.

It was Dec 23 and I was looking forward to going out on Christmas Eve with friends and family and be able to have a few drinks without having to run to the restroom every hour...if I could accomplish that, to me the treatment was already a success! Usually if I decide to have an alcoholic beverage (which is on the no-no list for the IC Diet) I end up in the bathroom at least every hour and am up 2-3 times in the night.

Well, I did behave myself, I only had 2 drinks and was not at all constantly in the bathroom and only was up once in the night-to me...Success!

So today I am glad to say I had my last of my 6 bladder installation treatments. In a way it's sad, I'm going to miss my weekly visits with the nurses at my Urology office, they are the nicest nurses that I've ever had to work with. Their compassion and concern for my treatment was heart warming.

I hope that when I go back to follow-up with Gina in April, I have nothing but good news for her.

I know that my journey isn't over, it's just beginning :)