chronic illness

Trouble for those with IC

Last August I took a trip to the Duke Endo Center and the best thing to come out of that visit was my IC diagnosis. Since starting treatment, I have experienced a significant drop in my pelvic pain. However, there is now a nationwide shortage on Elmiron which is used to treat IC. I tried to get my prescription refilled yesterday and was informed that it would be at least mid-August before the manufacturer would be able to fill orders. Three months without medication. As many as 8 million people in the US suffer with IC and with Elmiron being the most prevalent treatment, there are going to be a lot of people dealing with pain and three months may feel like an eternity.

The following is the statement from the manufacturer:

Ortho-McNeil-Janssen Pharmaceuticals Inc., would like to provide you with a product availability update for ELMIRON® (pentosan polysulfate sodium) 100-mg capsules. ELMIRON® will be on temporary supply shortage, which has begun impacting availability at retail pharmacies. We anticipate the shortage could last for several months. Therefore, healthcare professionals should plan individual patient treatment accordingly.

We have communicated the supply shortage to FDA. Please be assured that we are doing everything possible to resolve this situation and re-establish supply to our patients as quickly as possible.

If you or your patients have any questions, please contact the Customer Communications Center at 1-800-526-7736. Patients can also visit our Web site at www.orthoelmiron.com.

 

If I ever needed motivation to stick to the IC diet, it will be now. I’ve got enough pills if I lower my dose to last me the rest of the week but I am worried for the weeks following. Elmiron does a really good job of keeping my pelvic pain manageable and without it, the pain is unbearable and makes it really hard to function. My pharmacy is still working to locate some locally and I’ve got a call into my doctor to talk about substitutions so I’m holding my breathe hoping for good news.

weight loss

Wednesday Check-in: Getting Back in the Saddle

If you checked out Monday’s post, you’ve read that I’m attempting starting the IC Diet (which unfortunately excludes my beloved soda and chocolate). Day one went great. The days that followed not so good as I’m sitting here with a McD’s sweet tea on my desk. In my defense, although lousy, I haven’t had a chance to get to the grocery store but tonight is the night so I am stocking up and plan to be back on the wagon tomorrow. Hubs of course trying to be the great and wonderful husband he is came home with 3 2-liter Dr. Peppers last night. I guess they will go into hiding for his low blood sugars!

I did get in a short walk yesterday evening pulling Abby in the wagon and while its not much, it is at least a start.

I haven’t been able to fully jump on a Sisterhood challenge this year and it shows considering the pounds that have crept back on since the beginning of the year. So I definitely need to hop on board the next one! Sisters hold me to it!

Here are my current stats:

Starting Weight: 134.6

Disney Goal Weight: 125

Measurements:

Chest: 34″

Waist: 27″

Hips: 37″

I can totally do this. I CAN and I WILL. Who wants to be my drill sergeant?

chronic illness

Appointment Update & Reflection

Another update in my daily life with chronic illness. I had my doctor’s appointment this morning.  Going in, I was very apprehensive and nervous but I feel much better now that its over.  My wonderful husband went with me (I am such a lucky woman!).  Of course the first thing stated was the obvious – we don’t know what to do next.  We talked for awhile about what all was going on, both related and unrelated to the pain.  We went back over my list of medications and what we thought was or wasn’t working.  Then we went through my massive file looking at past tests and procedures.  Then came the fun part – the exam.

From there a couple things were decided.  1) Redo my blood work to check my thyroid and vitamin levels (as both could play a role in my symptoms).  2) Check for Interstitial Cystitis.  3) Get a 2nd opinion from a Gastroenterologist.  Three vials of blood later #1 was complete.  I go in Wednesday to have some medicine injected into my bladder that will both help the sensitivity plus serve as a diagnostic tool for IC.  #3 is in the works.  They sent in the referral forms this morning.  I knew that I needed to see a GI doc.  I just didn’t want to see my GI doc.  Their last recommendation was to “eat more yogurt.”  So I was happy when she suggested getting a second opinion.  She said that it seemed most of my pain and tenderness stemmed from my colon and she just has a gut feeling that something was missed.  Getting a 2nd opinion probably means having another colonoscopy but if it leads to answers I will take it (I will take that over drinking barium for a scan).

Even with all of the productive medical stuff, her frank conversation with me is what meant the most.  She said that I understand where you are in life.  Working, finishing up grad school, and having a family.  Its tough and its so easy to aim for the day when everything will all of a sudden get better.  For me, that day has been May 17th . . . graduation!  I have planned for months thinking that everything will miraculously become easier once that diploma is in my hand.  She said that that day will come and go and there will always be something else.  Grad school will be finished but Abby will be a toddler.  Then maybe it will be a new job.  Then maybe starting the adoption process again.  She said “I have learned that I cannot keep aiming for a day in the future for things to get easier or make sense.  That day will never come as life continues to go on.  You have to learn to live in the present and take each day as it comes.”  Profound statement.  I mean its easy to hear that and know it but its another to truly know it and grasp it.  I keep holding out hope for a day in the future to be finished with grad school, to lose 40 lbs, to be cured from my illnesses and be truly healthy, and to win a million dollars (ok…scratch the last one).  In the meantime, I am missing out on today.  I need to learn to be truly present today.  I think I have been selling myself short in so many areas both at home and at work.  What an eye opening moment it was!  These few sentences may have been the best thing to come out of this appointment. Daily life with chronic illness is ever evolving.