Wednesday, October 31, 2012



If you’ve been watching the coverage of the devastation of Hurricane Sandy, it sure gives a person pause.


Yes, those of us with IC are living with a unique set of challenges that sometimes seem to overwhelm, but when I see what others are going through as I sit in my warm, dry, comfy house it changes how I view my struggles compared to those back east.


It’s amazing how one’s feelings and emotions can change when you see people who have lost everything they own but the clothes on their backs.


Listening to people say they are just grateful to be alive, even though they’ve got nothing left and no idea when things will return to normal, if ever. 


I have a warm, dry, comfortable place to live, food to eat, a roof over my head and my family is safe. 


Often our pain and struggles, understandably, cause us to forget the things for which we should still be grateful


As I sat in the comfort of my cozy chair with a blanket over me to keep me warm and watched so many suffering so much, my Perspective changed. I do not and cannot pretend I don’t have my challenges, but I can change the way I view those challenges.

Perspective:  Mine is changed and I am grateful for what I DO have.  May we all find peace and gratitude for the good things in our lives and put what’s really important into Perspective!

With the complete destruction of the Famous Atlantic City Boardwalk due to Hurricane Sandy, I thought I would include this photo of my Mother riding a bicycle on the Atlantic City Boardwalk way back in 1943 when she and her sister and parents went for a vacation there. So sad that it's gone now when you look at this, now somewhat historic photo.

Tuesday, October 30, 2012


Today, as yesterday, my thoughts are with the people along the Eastern Seaboard that are suffering through the aftermath of Hurricane Sandy. I hope no one is hurt and all are safe. I know that getting back to normal will be challenging and often difficult, but I hope everyone finds ways to cope and get the help they need as soon as possible.

I have two doctor’s appointments today, so I am just going to leave everyone with my thoughts for everyone’s safety, health and well being. As the saying goes, the sun will come out tomorrow as it inevitably does.

Monday, October 29, 2012


My thoughts today are all over the place. The impending hurricane is threatening so many all along the Eastern seaboard, and I am sending my thoughts and good wishes to everyone in harm’s way. May everyone be safe. Our “things” can be replaced, but staying safe is the most important thing.

I think of everyone suffering with their IC that lives in the path of the hurricane and hope this doesn’t make their lives any more difficult. My thoughts are with you all.

I am trying to find a way to manage my own IC challenges leading up to my InterStim surgery scheduled for November 12th. I am frustrated and talked to my nurse this morning who I will see tomorrow and she has promised to speak with the doctor and try to formulate a plan. Still I am struggling more than usual and felt all of us could use some positive inspiration to help us. I’m somewhat familiar with this quote, but it seems appropriate today to share it with everyone. I hope you find some measure of inspiration, peace or encouragement from it as I do.
 “Don’t Quit”

When things go wrong as they sometimes will;
When the road you're trudging seems all uphill;
When the funds are low, and the debts are high
And you want to smile, but have to sigh;
When care is pressing you down a bit-
Rest if you must, but do not quit.

Success is failure turned inside out;
The silver tint of the clouds of doubt;
And you can never tell how close you are
It may be near when it seems so far;
So stick to the fight when you're hardest hit-
It's when things go wrong that you must not quit.
Author Unknown

My thoughts are with everyone today, no matter where you are. May everyone be well, safe and strong. I have a vision of us all holding hands encircling each other in safety and support of one another. Peace.

Sunday, October 28, 2012


 "HERO" - Mariah Carey

Saturday, October 27, 2012


I just have to say that my Mother is truly THE best mom there ever was! I just finished my last round of antibiotics on Thursday evening and I can tell today that I already have the signs of yet another UTI and am upset about this. Keeping me infection free until surgery on November 12th is really going to be a challenge, that's clear. So I've got that to deal with this problem and will have to call the doctor's office first thing Monday morning. In the meantime, I'm supposed to be self-catheterizing for my retention and I've used up all my Lidocaine gel and the pharmacy told me I am due to refill it but they don't have any in stock and won't until Monday. So I asked if there was a non-prescription STERILE alternative for me and they said they had something I could use. Well, my wonderful Mom called the pharmacy back and worked with them until they found some Lidocaine gel at another pharmacy as well my Latex gloves that I am also out of. She made all the calls and is running to the pharmacy to get it for me while here I lay with my heating pad and blanket trying to keep it together! My Mom really is amazing and I don't know what I'd do without her support!

So thank you to my Mom for all the love and support. I could not fight this battle without you!

In My Daughter's Eyes - Martina McBride


Those of you following this blog already know I am scheduled to have surgery on November 12th to replace my remaining old InterStim, since it finally died. It was my second one and was implanted in 2004. Since this has come up, I thought I would write a little about InterStim for anyone that may be considering it.

I have 2 InterStim. The first was implanted in 2003 and the second in 2004. Last summer (2011), my oldest one from 2003 finally died and I had it replaced in August 2011. Before InterStim my voids averaged 60-70 per day. With InterStim, my voids average about 25-30 per day. It really helps me and I don't know what I'd do without it! It's not FDA approved for pain, so if pain a bigger issue than urgency/frequency you may not see good results. But if urgency, frequency or retention are your biggest issues you likely are a good candidate.

Back when I had my original test phase in 2003, it was always done as a surgical procedure under anesthesia in the hospital. Now, most doctors do it with just a local in their office. This is what I had for the test phase last summer before replacing the dead one. It’s not difficult; you are given a local. It’s a bit uncomfortable but tolerable. How long the procedure to insert the test wires varies from patient to patient. They are looking for a particular physical response in certain locations and, most important, the character of the stimulation must be comfortable to the patient; not all settings are. So the point of the programming session is to find the right location to get a comfortable stimulation at that location. So it can sometimes take time to achieve that.  Last year my test phase was 5 days; some doctors go longer, so ask. It is imperative that you keep an accurate daily voiding diary BEFORE the test phase and then also during the test phase. This is the only way you will have accurate data to help determine if full implantation is right for you. You do not want to make that decision based on just a “sense” of what your voids are before and during the test. This is a must and will tell the tale.
But if you determine the test was successful, then typically you proceed to full implantation which is most definitely a surgical procedure done under anesthesia in the hospital. You will want to be sure to discuss post-op pain management with your doctor BEFORE the surgery. It is, for 99.9% of patients, an out-patient procedure so if all goes according to plan, you will go home the same day. Recovery also varies by patient, but I would say I felt 100% within about 3-4 weeks and that the first 48 hours post-op are the most difficult, but we’re all different.

InterStim is not a cure and it is not unusual to need to have re-programming sessions; through the years I've had numerous re-programming sessions that always got me back on track. Since I have had the oldest one replaced, things have gone very well and I haven't needed any re-programming in over a year now. That is until we discovered old one #2 is now dead!

One piece of research I highly recommend is, if you are not a member of the ICA go to the ICA website and purchase the Spring 2012 issue of the ICA Update Magazine. There is an excellent interview with a physician that is extremely knowledgeable on InterStim and discusses all the pros and cons and explains when it is appropriate to try and for which patients.

One quote from the article by the doctor: “Certainly for me and my patients, it has been substantially helpful in a number of cases. I would say the success rate in terms of a positive significant reduction in frequency for my patients is at about 60 to 70 percent. InterStim today is not very invasive. I’m making only a couple of small incisions. That’s a big change from when I first started doing these in 1998. Then it was a much more invasive”

I strongly urge you to purchase this issue as part of your research. InterStim has changed considerably over the years and a lot of what you’ll find online is old info and does not reflect what is currently going on with relation to this treatment. Here’s a link to the ICA website where you can purchase back issues of the ICA Update (you want the Spring 2012 issue) as well as a link to the ICA website on electrical neuromodulation. There is more than just InterStim available today, so I encourage anyone thinking of this to do your research.

I hope this is helpful for anyone thinking of this as a treatment option. Let me know if you have any questions.

Friday, October 26, 2012


So many of us talk often about what it’s like to live with an invisible disease and what it feels like when people make nasty and negative comments that hurt. We all know how that feels and none of us likes it! We have talked many times about how people should be more aware, think before they speak and in general just avoid making assumptions about people and of course, never use derogatory remarks toward people with invisible diseases.

Well, how would you feel if you have a special needs child or family member that you have loved and supported and helped work to develop their self-esteem that was put through the same thing we often complain about? We teach our children, and especially special needs children, that it’s unacceptable to name call and then they see a person of high visibility name calling the President of the United States and using a word meant to belittle and insult him

Well, if we all believe strongly in what we so often complain WE must deal with, we should all be beyond outraged by the comment that Ann Coulter posted on Twitter after the debate earlier this week, calling the President of the United States a “retard”.  She is constantly making disgusting remarks, but  we all know what that feels like and we don’t like it one little bit. Her comment has hurt and offended so many special needs individuals that I believe we have a unique perspective of understanding and should stand together to support the condemnation of this woman and her comments.

Here’s a link to an excellent editorial in The Chicago Tribune that I feel is important to read, as well as an open letter written by a Special Olympian in response to these disgusting remarks.

I hope everyone takes a moment to read these articles, think about how this feels and how you would feel if someone you loved read this comment and it hurt them deeply.  As patients suffering from chronic illness and fighting to create awareness and understanding for ourselves, we of all people, should strongly object to this type of negative stereotyping and name calling no matter what your political affiliation may be.

Let’s all stand together in condemning this type of cruel, insensitive and frankly low class bullying by Ann Coulter and everyone, everywhere! If we want better understanding for our struggles; how can we ever hope to achieve understanding and kindness for people with all types of illness, special needs and challenges if we stay silent?