Professional Patient

Endometriosis, Take Two

In March of last year, I had laparoscopic surgery to remove ovarian cysts and endometriotic tissue. Now it's all back, and it brought friends. Sigh. I have cysts on both ovaries, fibroids all over the place, two possibly scarred-over, fluid-filled fallopian tubes (hydrosalpinx), and probably endometriosis scattered all around my pelvis. I also may have a bit of adenomyosis, which is when endometrial cells invade the muscle layer of your uterus. Adenomyosis can cause severe, knife-like pain and cramping with your period; irregular and extremely heavy bleeding; and cramping throughout the month (not just during your period).

Now I have to figure out what to do about it. More surgery? But what kind? My fallopian tubes will probably need to come out. Do we cut out the fibroids and cysts as well? And if we're going in there, shouldn't we scoop out the endometriosis? But then what - how do I keep this from being a constant plague? Hysterectomy? Uterine surgery (called resection) to remove the adenomyosis? Removal of my ovaries (which will cause menopause)? Use of the Mirena IUD? Standard care for endometriosis is to use birth control pills - this regulates hormone fluctuations and imbalances that contribute to endometriosis and fibroids. But as a Sjogren's patient with positive anticardiolipin antibody, hormones aren't a good idea for me - they increase my already higher-than-average risk of blood clots. Another temporary option is the use of Lupron and similar drugs that tell your ovaries to stop doing their thing -- these drugs are essentially "instant menopause". But these drugs can worsen depression, which I am already very prone to. So that's out as well.

Ick. It really stinks to know that most of the medical options for treating this condition aren't a good idea for me. But I am appalled at the idea of removing organs. And I am equally afraid that if I don't, this will all keep coming back. I am also afraid that even if I do remove ovaries, tubes, uterus, etc. the endometriosis will still come back (it's happened to other women before). And I am also afraid that if I do have major surgery, the pain of endo/adenomyosis will continue. That has also been known to happen - the scarring and damage done to your pelvic organs and tissues can be severe enough to create a lingering pain problem, even after hysterectomy.

What an epic mess. As I work through this, I will try and post more. I have been neglecting this blog because life has been overwhelming - major changes at my job (requiring more work, longer hours, and more stress), some marital issues (although I can now say that couples counseling is well worth it), an ER visit in May for excessive menstrual bleeding, appealing the insurance company's refusal to pay for the ER visit, and now this endometriosis odyssey (what do I do? How fast? Who do I talk to?).

If you want to learn more about my conditions, try these links:

Adenomyosis, from the Mayo Clinic website: http://www.mayoclinic.com/health/Adenomyosis/DS00636

Endometriosis, from the Mayo Clinic website: http://www.mayoclinic.com/health/endometriosis/DS00289

"The stages of endometriosis," from the EndoChick blog: http://endochick.wordpress.com/2009/03/03/the-stages-of-endometriosis/

[From what I've read, if I have scarred-over/stopped-up fallopian tubes, then I have either stage 3 or stage 4 endometriosis. Always the overachiever!]

 

World Sjogren's Day

On July 23rd, the Sjögren's Syndrome Foundation will join with 16 other Sjögren's groups around the world as we all celebrate the 1st Annual World Sjögren's Day.

SSF chose July 23rd as World Sjögren's Day because it was Dr. Henrik Sjögren's birthday. In honor of this special day, SSF is  asking you to consider joining with patients and advocates worldwide to spread information about Sjögren's through your family, friends and communities; display a poster, handout brochures or just tell someone about Sjögren's.

A New Sjogren's Low

I reached a new Sjogren's low while on vacation last week. I was chewing Orbit sugar-free gum, and my mouth was so dry that the gum stuck to the roof of my mouth! I had to scrape it off with a fingernail. Eww. 

You Might Be a Sjogie If...

You might be a Sjogie if, every time you pass a mirror, you don't check your hair, or your makeup, or straighten your shirt. That would be too normal! You might be a Sjogie if every time you pass a mirror, you check your smile for food stuck in your teeth, white saliva crust on your lips, and gook in the corners of your eyes.

It's a sexy life, but somebody has to do it!

Patients for a Moment: Humor Round-Up

Hello! My life has been a lot sideways, lately. But I finally have a healthy-enough moment that I can use it to post something.

Patients for a Moment is a weekly round-up of blog posts written by people like you and me - patients fighting through one crazy illness or another.

The week of May 5, Chronic Babe hosted PFAM, with all articles focusing on this question:

What's your most laugh-out-loud illness-related experience?

We can all use a dose of funny, so check these great articles out.

Alternate-Day Prednisone

I have been on prednisone, 7 mg per day, for more than a year and a half. Prednisone is great - I have better energy, clearer thinking, more stamina, and my anemia and leukopenia are gone. But prednisone is trouble over the long term... it can cause an array of terrible side effects like diabetes, cataracts, broken bones (caused by osteoporosis), vicious mood swings, hunger, extremely thin skin, weight gain, insomnia, tremor, and inability to fight off infection. Also on the list: muscle weakness, especially in the shoulders and thighs. 

My muscles started feeling weak over 6 months ago. And I have been on prednisone for far too long. So I think it's time to wean off. Maybe my muscles will feel better after I am prednisone-free; maybe not. But I'm ready to find out. 

Prednisone works in place of hormones that your adrenal gland would normally produce. When someone takes prednisone every single day for a long time (more than a month), the adrenal gland slacks off and stops doing its work. So your body stops producing (or produces much less of) its own adrenal hormones:

"Prednisone mimics the function of the natural hormones produced by the adrenal glands. When patients take prednisone for long periods of time, the production of natural adrenal hormones decreases because of prednisone's effect on the pituitary, the master gland that controls the adrenals. This typically happens when the dose is higher than 5 - 7 mg per day and used for periods longer than one month." Source: Weaning from Prednisone, from Sarcinfo.com) 

Your adrenal glands also shrink from this lack of activity: "By this time [four weeks after you start taking prednisone], some shrinking of the adrenal glands will occur, as their burden of producing cortisone has been relieved." (Source: Systemic steroids, from Dermnet New Zealand)

The normal approach to taking someone off prednisone (someone who has taken prednisone for a long time) is to gradually taper the dose - I might take 6 mg per day every day for a month, then 5 mg per day every day for a month, then 4 mg per day every day for a month (and so on)... this gives your adrenal gland time to wake up. I have tried this in the past (I tapered from 10 mg to 7 mg a while back), and man, does it make me tired. I don't think my adrenal gland is in any mood to wake up and get back to work. 

My rheumatologist has suggested that we try something a little different: alternate-day dosing. One day I take approximately double the normal dose of prednisone (10 mg), and the next I take 0. This is intended to allow people to stay on prednisone for an even longer period of time while minimizing some of the side effects. The rationale is that the alternate-day schedule forces the adrenal gland to wake up and start working again on those days when no prednisone comes in. 

Rather than using alternate-day dosing as a way to stay on prednisone for even more time, I want to use it to get ready to quit prednisone. By spending some time on an alternate-day schedule, my adrenal gland can start to warm up and get back to work before I begin to taper off the medication completely. 

First, I have to taper into the alternate-day plan. I will go 10 mg on even days and 5 mg on odd days for a month, then 10 mg/2.5 mg for a month (I'm starting this phase right now), then 10 mg/0 mg. 

I plan to stay at that level for a few weeks, and then will likely taper off the med altogether. I can envision going 9 mg/0 mg for a month, then 8 mg/0 mg for a month, then 7 mg/0 mg for a month... until I'm at 0/0. This article on systemic steroid use suggests that the adrenal gland may not fully recover for up to one year after steroid therapy. Maybe by the time I get through my elaborate, alternate-day tapering plan, my adrenal gland will be fully energized and ready to go. 

Side effects of going to an alternate-day dosing schedule so far have included increased appetite, periods of improved sleep (longer sleep) mixed in with periods of insomnia, and extreme mental fatigue during the first one to two weeks after stepping down my prednisone dose (I may need to try something like provigil to help get my mental focus back - the quality of my work is really suffering). My energy level within any given day is really unpredictable - I can be OK one minute and ready to pass out from fatigue the next. My muscles feel better, although not all the time - they hurt, but they are less tired. The biggest surprise for me so far is my depression - prednisone had made it nearly disappear, and now it's back (even though I am at the 10 mg/2.5 mg level rather than 10 mg/0 mg). 

Learn more:

Prednisolone tablet information from consultantlive.com. Scroll down to the "Dosage" section and look for the Alternate-Day Therapy heading. 

Systemic steroids, from Dermnet New Zealand. 

Steroids (oral cortisone), from the American Osteopathic College of Dermatology.

Weaning from Prednisone, from Sarcinfo.com. 

The Flexibility to Think Differently

One thing that chronic illness has blessed me with - the freedom and flexibility to look for solutions that fall outside of what's "normal".

It's really NOT fun when, early in a chronic illness, you have no choice but to find new solutions. Too tired to work 40 hours per week? Part time will have to do. Too tired and sore to take that rock-climbing vacation? A stay-cation is the only alternative on short notice. Can't bend down to pick up your child? Time to sit on the floor with them. No one likes having to make these choices, especially when we feel like our illness is forcing them on us.

However, with years of practice, I think this experience teaches us to constantly problem-solve. And to think "outside the box" (sometimes, just out of sheer desperation). And to bounce back after any kind of short-term failure (if solution A doesn't work as we hoped, we have to dig in and find solution B, C, D...) That's how I have wound up being the auntie who sits on the floor with toddlers (my arms can't pick them up), adding wide-angle side mirrors to my car, and only working 3 days per week (and no more than 6 hours per day). 

This mindset is helping me think through two major problems right now: getting pregnant (no luck so far), and trying to vacation the way my husband likes to (spending 12 to 16 hours per day sightseeing, mostly on foot). To solve the pregnancy problem, I could try somewhat standard solutions like IVF. Or I could adopt. But I've also considered slightly stranger options: using a surrogate or trying herbal medicine and acupuncture. To help my husband vacation without me slowing him down, I could get a motorized mobility scooter (it would help some), or better yet, we could start traveling with other friends or family as part of a group - so there's always someone ready to go pound the pavement with my husband (even if I am still in the hotel, sleeping). I would never have been as open to either of those solutions if illness had not been in my life, forcing me to try, try again. 

Endometriosis Recovery

In January, I learned that I had several "complex" ovarian cysts (see related post). I rushed to a gynecological oncologist to find out what was going on. She recommended surgery to remove the cysts - they aren't supposed to be there, so why hang on to them? And there is always a chance that ovarian cysts can be cancerous - even in premenopausal women. 

So on March 1, I had a laparoscopic surgery to remove my cysts. Once the doctor started the surgery, she discovered what looked like stray endometrial tissue (which normally lines your uterus) here, there, and everywhere. So she removed all of that... plus my three ovarian cysts (one of which had grown to the size of a golf ball - and was starting to stick to my bowels). 

The removed tissue was sent to a pathologist for analysis, and I received my diagnosis: endometriosis, not cancer. 

Endometriosis is a condition that occurs when tissue from your uterus somehow escapes its home and lands in your pelvis or on your ovaries and fallopian tubes. (This picture from MayoClinic.com is a great illustration of what endometriosis looks like once it is established.) The tissue grows and shrinks in sync with your regular menstrual cycle, bleeding each month. This can cause scarring over time - called adhesions - that can damage your ovaries and fallopian tubes and can cause problems with other organs. (Endometrial tissue is very sticky, and "sticks" to other things inside you. Adhesions are more like cement or strong velcro - with the same kind of effect). 

Endometriosis can be very painful, although in some women, the pain is very mild. For at least a year before my diagnosis, my periods had gotten quite painful - sharp pain near my ovaries, and tons of low back pain plus severe cramps. 

I hoped the removal of the endometrial tissue and cysts would make me feel better, but so far, I feel worse - more pain before and during my period. Yuck. According to the Center for Endometriosis Care, "Pain after surgery - what you can expect", this is normal - the first cycle after surgery can be very painful, as your body works to heal over the places where the endometrial tissue was removed. The site suggests that 12 weeks is the typical time frame for feeling "totally better" after surgery, although some patients report recovering in a much longer period of time - up to one year.

As part of my post-surgery follow-up, I had an ultrasound done (about 6 weeks post-surgery) to see how things looked. To my dismay, I have two NEW cysts. How is this possible?? Is my endometriosis back? According to the Center for Endometriosis Care, "Is my endometriosis coming back?" new cysts after surgery are not entirely unusual - they may be part of your ovaries' recovery process. If you still have cysts more than 6 months after surgery, then it's time to worry. 

Phone Apps Help You Manage Your Medications

There are a growing number of phone apps that will help you manage your medications. Several will even remind you to take them, with customizable ring tone options to differentiate times of day, types of pills, etc. Fees may apply, so read carefully before downloading one of these apps. 

For Android phones:

My Pillbox Alert will remind you to take your pills, and lets you select different ringtones for different reminders.

MedsTimerLog lets you log your medications as you take them - you can even shoot a photo of each pill and then click on the photo to log your use of the med. 

For iPhones:

my Community Pillbox, Pillboxer, and the Pill Phone all help you manage your medications. Pillboxer includes a log of medications (which visually indicates which doses you have yet to take) and online reference info. for a wide range of FDA-approved meds. my Community Pillbox lets you manage meds for multiple members of your family. The Pill Phone is available on Verizon only. 

Mobihealthnews.com has an online review that compares the three applications (Pillboxer, my Community Pillbox, and the Pill Phone). 

Remembering to Take Your Meds

If you have brain fog and/or a complicated medication schedule, how can you remember to take your meds - on time, every time?

Write out your ideal medication schedule - what to take, and when

It all starts by knowing what you should be doing every day. Sit down and write out your schedule for a typical day - mine looks something like this: 

8 am - take x, y, z 

3 pm - take yy

8 pm - take zz, z, y, and z. 

Base this on a "normal" day - for me, my ideal schedule is based on weekdays (when I go to work). 

If you aren't sure what you are supposed to be taking at what times, go back to your doctor and ask. Important questions include - How many times a day? Morning or evening? Before or after a meal? Can I skip doses? What should I not do when taking this medicine? (That last question helped me learn that I should take my antidepressant doses at least 6 hours apart - taking them closer together could cause seizures). 

After you know your ideal pill schedule, you need to remember to follow it. Some tips and tricks:

Use a checklist or notecard to track your progress each day

Photocopy your medication schedule. Each day, take a copy of the schedule and place a checkmark next to each medication as you take it. (You can also do this on your computer.) This will help you remember what you have already taken and what you still need to take. You can also confirm that you are taking meds at the right time.

Every day, I do something like this. I use a 3 by 5 card and jot down the date and the time and name of any meds that I take. Then I place the 3 by 5 card in a plastic 3 by 5 card storage box. As days go by, I accumulate more and more completed cards. If I get confused on a particular day about what I should take or when, I can look at previous days' cards to remind myself. The repetition of writing down things like "3/15: 8 am: Wellbutrin, prednisone 7 mg, Advair" every day helps me remember my routine. Keeping a daily record of your medications is also helpful when you are making changes to your routine (adding or stopping a medication). And it can give you a record you can refer back to when filling out disability applications or preparing to visit a new doc. You have a record of what meds you have tried for problem x and how long you have been on them.

Add pill boxes

Many people also love to use pill boxes to map out their day or week's pills. When I was taking pain medication regularly (every 4-6 hours), I used a 4-compartment plastic pill organizer with the labels morning, noon, evening, bedtime. I filled up the box in the morning with my full days' worth of pills. Then for the rest of the day, I could concentrate on taking the pills and not worry so much about whether I had the right doses. Similarly, some people get massive pill boxes/sorters that hold a week's worth of pills. They fill the box on a quiet day - maybe a weekend day - and then simply take the pills for the rest of the week. You can even get a 7-day pill box system that includes four separate compartments within each day - so you can map out morning, noon, evening, and bedtime doses for each day of the week. (this also comes in a flat tray version). 

Remind, remind, remind

If remembering that you need to take medications in the first place is the problem, there are a variety of helpers. You can put post-its on your computer or your bathroom mirror that remind you of which pills to take at which times. You can leave yourself a voice mail message (at home or work) that tells you what pills to take and when... just play the message each day to remember. You can set alarms on your smart phone. You can use a program like Outlook and set up individual appointments in your calendar to remind you to take the med. Outlook will even give you an on-screen warning 15 minutes before the time of the appointment (i.e., the time that you need to take the medication). 

There are also fancy watches that will let you set up to 12 alarms a day to remind you to take your pills; vibrating pill boxes with built in electronic alarms (up to 4 a day); and new services that will phone, email, or text you every time you need to take a pill (these often require a monthly paid subscription). Samples of the reminder service include BlueberryRx, On Time Rx, and FreeRxReminder (which is free if all you require is text reminders). 

More tips and resources:

15 Questions to Ask Your Doctor About Your Medications, from about.com

Top 5 Ways to Manage Your Medications, from about.com

Managing and Remembering Medications, from the bipolar community on About.com. Includes some inventive ways to organize yourself and to motivate yourself to take your pills - like using a spinning spice rack to hold bottles, and having a friend pay you every time you remember to take a dose.