TAKING CARE OF YOURSELF!

Today I am taking it easy and want to encourage others to give themselves permission to do the same. I know many of you have families that need to be taken care of, but when dealing with IC, we have to take care of ourselves too. You should never feel guilty about that. I’m not going to write a long blog today and take Sunday to re-charge my brain, rest my body and treat myself to a warm blanket and some favorite tv shows on my DVR. We all need to do things like this for ourselves and not feel guilty or that you are a bad wife/mother, etc. In fact, get your family to buy in to letting you have one day that is “your day” and you don’t worry about cleaning, laundry or fixing dinner; pick a day that works for all of you. Do whatever it is that you need to do for yourself; take a nap, watch tv, read a good book, listen to music, soak in a tub (if you can), curl up with your heating pad; whatever helps you de-stress and make you feel better. So, here’s to giving ourselves permission to take care of ourselves; I hope everyone has a restful, peaceful and happy day!

I find this inspirational so I wanted to share it with everyone. This song by Rob Thomas was written for his wife Marisol Maldonado Thomas who suffers from a rare autoimmune disease similar to lupus. The beautiful Puerto Rican model doesn't seem like the poster child for autoimmune disease, but with her husband's words, anyone suffering from one of the autoimmune disease recognizes her pain.

http://www.youtube.com/watch?v=mNCgfrjKcqs

THANK YOU ICA!

THANK YOU ICA!

Today, I am taking time to say thank you to the Interstitial Cystitis Association! If you have been reading my blog it is very likely because I have posted about it on the ICA’s Facebook page (thank you ICA). So I wanted to take today to pay tribute to the ICA for all the work they do for those of us suffering from IC and related conditions. If we are taking advantage of the services they provide by using the ICA Facebook page to reach out to others with IC, share our experiences and get support from each other, we have the ICA to thank for this. Without the important work they do, so many of us would still be looking for good information, a place for support and updates on research and education programs. If you are taking advantage of the ICA Facebook page, the very excellent ICA website, we owe the ICA a debt of gratitude.  

A federal grant funded through the Centers for Disease Control and Prevention (CDC) IC Program has provided approximately 50% of the ICA’s budget. Because of the fiscal 2011 budget cuts, the CDC eliminated funding for the IC Program and the ICA did not receive this grant funding as originally allocated. This was a tremendous loss in dollars that supported the important mission of the ICA! It has been a struggle without this funding to keep the ICA’s mission alive, and continue to help patients like us, without additional fundraising.  In June this year, members of the ICA’s Board of Directors, Executive Director and IC Advocates were on Capitol Hill discussing medical research and public health funding levels in the fiscal year 2013 federal government budget. The ICA team met with 24 Congressional offices representing 9 states and the District of Columbia and much more! You can read more about this on the ICA’s website using the following link:

http://www.ichelp.org/Page.aspx?pid=758

Just this past week, the ICA posted on their Facebook page about attending and participating in the American Urogynecologic Society (AUGS) Annual Meeting in Chicago. You’ve probably seen several posts about this on the ICA Facebook page.  These are the extremely important types of activities that help raise awareness and educate the medical community, which we all agree is so important. This is the truly important work that the ICA is doing on our behalf.

Of course, participating in events like this, keeping the website up and running and current, keeping the Facebook page up, educating the medical community and so much more,  takes money and the ICA desperately needs funding in order to continue the important work they do and keep their mission and vision alive for all of us living with IC.

So here’s the thing, I believe the best thing any of us can do to support the ICA is to become a member! By becoming a member you are helping the ICA help us all! As you will read on the ICA website: “Membership donations help fuel daily operations, keeping the ICA there for newly diagnosed patients, giving us the ability to respond to advocacy issues as they arise, and monitoring ICA pilot and other research grant programs.”

If money is tight (I get it, I’m on Disability), ask friends and family to get together and give you a gift of an ICA Membership for your Birthday, Anniversary, Holiday Gift or just because they know it’s important to you and want to support you.  I know we all have medical bills and not a lot of spare cash, but I believe being a member is so important I save up throughout the year to insure that I can renew my membership every year. Save your spare change until you have enough; there are so many ways to come up with $45 if you put your mind to it. 

You could also start your own Fundraising Campaign. I’ve done this. The ICA even has a great FREE Fundraising  Toolkit and will set up a page on the ICA website where people can go to donate to your campaign. I recently raised over $400 for my continuing campaign by simply emailing my friends and family and asking that for my birthday they not give me gifts, but instead donate to my Campaign! It was so exciting to raise that much money (that will go DIRECTLY to IC research) with just one email! I’ll post a link to the Fundraising Toolkit page and you can see my page as well as fundraising pages set up by others.

http://www.ichelp.org/page.aspx?pid=620

http://www.ichelp.org/sslpage.aspx?pid=1060

The ICA Facebook page has over 10,000 “Likes”.  Just imagine what impact we could have on helping not just the ICA, but in turn all of us suffering from IC, if everyone who “Likes” the ICA Facebook page actually became a member! 

QUOTE FOR THE DAY!

QUOTE FOR TODAY!

You gain strength, courage, and confidence
by every experience in which
you really stop to look fear in the face.
You must do the thing
which you think you cannot do.
-Eleanor Roosevelt

 http://www.youtube.com/watch?v=QTahrYXCChI

 

BE YOUR OWN ADVOCATE!

We’ve all talked about how often we feel our doctors aren’t listening to us, and while we all agree there are doctors that are just not getting it I believe we as patients have a responsibility to make sure we communicate our needs to our doctors if we are to get the best care possible. Even the good doctors want a patient that can communicate clearly and concisely what is wrong and come prepared to discuss their questions and concerns.  I have always recommended getting as educated about your IC before you ever walk through the doors of your doctor’s office.  Go to the ICA website and read all you can; read the AUA Guidelines; print out things you feel are pertinent to what you want to discuss. Here are some tips that I think can help make the time with your doctor more productive.

#1 Write down questions in order of priority, keeping a pain or voiding diary, and be ready to talk about your medications or any treatments you’ve tried or are currently using. Take notes as you discuss your questions so when you get home you don’t forget what you talked about.

#2 I believe you should keep your own medical file at home with copies of lab reports and doctors' notes. These should be updated regularly and I suggest reviewing your file periodically to insure you’ve already discussed a treatment option or in case you want to re-visit one. I have copies of my entire medical file, but more importantly since I’ve been struggling with repeated UTI’s, I have made sure to get copies of each lab report each time I got one. This has come in handy several times when discussing how often this was happening and how different all of them were.

 

#3 BE HONEST with your doctor! Patients are sometimes afraid to disappoint a doctor if they have made little or no progress or are embarrassed about certain symptoms or about a failure to take medication as directed. You need to be forthcoming no matter what. Your doctor can’t help you if he doesn’t have all the information.

 

#4 Think of yourself as being a part of the solution. As I mentioned above, there is great benefit from educating yourself on the ins-and-outs of your condition and treatment options, as well as trying to find support in others who are fighting the same battle (I guess if you are reading this, then you are already following this tip). As I recently read in an article: "Doctors respect patients who take ownership of their own care, who show that they are actively engaged.” I find this to be my experience with ALL my doctors, not just my IC doctor!

 

#5 Don’t ever leave a doctor's practice in anger or haste. This can cause ill will and prevent cooperation in the future for medical care with another provider. Think long term and even if you’ve decided your current doctor isn’t the one for you, if you leave on polite and professional terms, it can prove helpful when you start working with your new doctor.

 

#6 For those who are always asking why their IC doctor won’t help them with their pain, most physicians have received minimal training in pain management. It’s important to find the right pain management doctor that is properly trained to help you. Most IC doctors, primary cares, urologists, gynecologists, etc. are not inclined to get involved in pain management because it’s not part of their own training. Your IC doctor may very well be sufficient for treating your pain to some extent, but should be giving you a referral to a Pain Management Specialist.

As a prominent pain doctor has written: “Currently in America, the vast majority of "pain management" practitioners have not completed accredited interventional pain fellowships. This is important because without proper training, there is no proof of one's knowledge, experience and proficiency in one's field. Even when a practitioner has passed medical school, completed an anesthesiology residency, completed an accredited interventional pain fellowship, and has passed all their board examination, there still can be variability in competency and outcomes.”

So, see if you can get a referral to a good pain doctor that understands chronic pelvic pain and IC. Do your research and find out what their qualifications are.  A few resources to help you might be the American Board of Pain Medicine; the American Pain Society; the American Pain Foundation, the American Academy of Pain Management, and the American Society of Interventional Pain Physicians.

http://www.abpm.org/

http://www.ampainsoc.org/

http://www.painfoundation.org/

http://www.aapainmanage.org/

http://www.asipp.org/index.html

I hope these tips are helpful. These are intended to help you become your own best advocate when it comes to your health care. My Mom taught me how to advocate for myself years ago and over the years, I have gotten much better at it; using these tips can help you talk with your doctor so that your time together is spent in the most productive way possible!

 

Here’s a great link to the ICA website page that I think is good for everyone, not just newly diagnosed IC patients. Check it out!

 

 

http://www.ichelp.org/sslpage.aspx?pid=1127

RAISING IC AWARENESS!

Since this is something I'm trying these days, I thought I'd write about using Social Media in our battle to create IC Awareness. Because I so often read so many of my IC Facebook Friend’s posts – and other’s as well – they are often pleading for more IC Awareness and funding for research (always a good thing). Often, posts have been about writing letters to Dr. Oz or various medical tv shows. I feel those are not bad ideas, but I think a better approach is to target these tv doctors via Social Media instead of writing letters or emailing the show website(s). I have been targeting all the network tv doctors and more via their Twitter accounts and Facebook pages. I am commenting frequently, often multiple times in the same day. Imagine what we might accomplish if everyone with IC did the same thing. There are no guarantees, of course, but nothing ventured, nothing gained I say and this is  how these people now get their feedback from their audience(s)! So, here are the key doctors and health site organizations I am following on Twitter and sending Tweets to every single day about IC: 

Dr. Oz:  @DrOz

Dr. Nancy Snyderman (NBC):  @DrNancyNBCNEWSi

Dr. Sanjay Gupta (CNN):  @sanjayguptaCNN

Jonathan LaPook, M.D (CBS):  @DrLaPook

Richard Besser, M.D. (ABC):   @DrRichardBesser

Richard Knox (Health and science correspondent, NPR): ‏ @DickKnox

Andrew Weil, M.D:  @DrWeil

NYTimes Health:  ‏ @nytimeshealth

Dr. Jennifer Ashton (MD,Ob-Gyn, women's health expert):  ‏ @DrJAshton

NBC News Health:  ‏@NBCNewsHealth

womenshealth.gov:  ‏ @womenshealth

BeWell (The latest health and wellness news from NBC News’ Nancy Snyderman, breast cancer guru Susan Love, and the other BeWell.com health experts.):  ‏ @BeWell

NIH for Health: ‏ @NIHforHealth

So, get yourself on Twitter, start following all these medical professionals; see if they also have a Facebook page. If so, “Like” them and start posting on there as well. Tweet every day, post on FB every day. Let’s hit them hard with all the power of the IC Community! You never know until you try and Social Media is where it’s at these days so let’s rally together and see what kind of impact we can have!

LEARNING TO COPE!

Today's post is a bit of a cheat. I read this article and it really resonated with me and wanted to share it with everyone. I've talked about this in my own way before, but this piece is written by a pain doctor and really explains how we can learn coping techniques to deal with our chronic pain and how finding the right doctor can make such a difference. My therapist and I have discussed this very thing in many sessions, and I've tried to pass along simplified ideas of the same nature. I hope you all find this interesting and helpful. I did.

http://www.psychologytoday.com/collections/201105/bouncing-back-living-chronic-illness/teaming-against-pain

DISABILITY OR NOT?

Recently, I have been seeing a lot of people talking about how hard it is to sort of “pull the trigger” and apply for Disability. Some have said they feel “defeated” among other negative feelings. So I wanted to expand on this topic and I want to say this about making the decision to file for Disability: You are NOT defeated!

I believe very strongly that whenever patients suffering from IC make the difficult choice to apply for disability they do so out of COURAGE! As a patient advocate on Disability I can state with 100% certainty that not one of us WANTS to go on disability. In fact, most of us put it off longer than our doctors believe is in our best interests. I understand how this feels; you should have seen me sitting in my doctor’s office the day he told me I was hurting myself and not helping my health by fighting to keep working and seen me crying like a baby! None of us wants to be sick and put into this situation! Yeah, no, this is NOT fun and it’s not retirement! Every patient I talk with wants to keep working and being a productive member of society and so if you are contemplating Disability, I want you to know that you are likely feeling what many of us go through. Often acknowledging we need to do this brings up emotions and feelings that going on disability somehow diminishes us and our self-esteem takes a hit when we have to stop working because of our health! But this is not true and you should not feel defeated or worry what others might think. Disability is there as a safety net that allows us to do what is in our own best interest. As my doctor told me, disability is to help me have a better quality of life than I had before I stopped working. It’s a process and you’ll get there. For me, working with a therapist has helped a lot.

Ultimately, you are doing what you need to do to help yourself and your health. There are even people that have used Disability as a time of recovery; rested, got their treatment plan sorted out and have been able to return to work. So whether you need it permanently, or are able to return to work one day, it is designed to help us and we should never be embarrassed that we are sick and in need of help.  It can be a roller coaster of emotions as you go through the entire process, but I encourage those that are contemplating Disability to remember you are doing what you need to do and not allow negative emotions to take over.  Hold your head up high, fight for your rights and never give up!  I am here if anyone wants to discuss this with me.

And don’t forget the ICA can help you with this process, as they have an excellent page on their website with lots of excellent information on the Disability and I’ll post that link.

http://www.ichelp.org/page.aspx?pid=906