Two Peas in a Pod!

IC is like a preteen girl at the mall. It travels in a small troop never veering too far from its gal pals, perhaps less glitter than a girl of such an age (please tell me preteens still wear glitter?!?) but the analogy is viable none the less. IC is a popular little thing with many potential besties waiting at its skirt to be accepted into the clique of chronic illness.

As far as I can tell after meeting hundreds of people with IC over the years, some of IC’s closest bosom buddies are IBS- irritable bowel syndrome, Fibromyalgia, vulvadynia, PFD- pelvic floor dysfunction, anxiety, and depression. However, I would say IC’s BFF is endometriosis… that little… meanyface. Those two are just two peas in a pod... you can't go too far with one without meeting the other...

I am very fortunate that out of all of those listed I am only cursed with a small handful including IC, vulvadynia, pfd and of course… endometriosis. Man, I really hate that one and it takes a lot for me to hate something that I’m comparing to a preteen in low rise jeans and  parent forbidden make up. (I have a special love for the pre-teen age, maybe because that was right before I got sick or maybe just because drama back then was never more than who had held hands with who and which house my friends and I would spend the night at that weekend.) Never the less, this little endometriosis poser isn’t what she may appear. She’s a cold hearted, pelvis stabbing, devil mistress. So there.

Before the letters I and C had any special meaning to me my journey with endometriosis was quite under way. I started my period at the innocent age of 9 years old and problems started not long after. Each cycle progressively brought worse pain and harder cramps until my Mom announced we were going to see a “women’s doctor”… I promptly stated that I would not be attending any such appointment and she should have a merry time without me. To further prove my point on the day of the appointment, with help from my ever-eager-to-help-me-get-into-trouble sister, I tied myself to a tree with a water ski rope. 

Now you see why I had a ski rope lying around... I had some mad skills back in the day! 

After untying me from the giant tree that our tree house resided my Mom herded me to the car and we headed for the appointment. Despite all my fears and further proving my Mom's validity the appointment ended up being totally fine! The kind, composed doctor made me feel totally at ease even though this doctor was a… MAN! He was the sweetest man I could have conjured to chat with about my young lady business. Dr. Dennis Brown is his name and I couldn’t be more proud to be his patient still to this day.

He prescribed me a low dose of birth control pills to help regulate and ease up my cycle and said to come back if it didn't help. Later after a conference with my Dad I was told it would just be called my “medicine” to keep any questionable thoughts from others at bay.

Of course the “medicine” did nothing to alleviate my symptoms and I found myself back at the doctor in worse pain than before. So at age 14 I went “under the knife” for the first time. During that first laparoscopy my kind sir of a doctor determined that I already had fairly severe endometriosis and he lasered off every trace of it.

No matter what kind or how high a dose of “medicine” I took my cramps came back within a year of the laparoscopy. So my faithful and sure doctor determined that we had to stop the growth and the only way to do that was to go through menopause. So out came the heavy duty drugs. I was to come in once a month for an injection of a drug called Lupron that would force my body into FULL BLOWN menopause at the shockingly young age of 15.

Young and sick but still smiling! I admire young me! 

Though the cramps and deep pains did start to subside the side effects from the drug were intense for my already wonky, hormonal, teenaged self. The hot flashes were the worst part, I would be somewhere minding my own business when SUDDENLY my blood would seemingly burst into FLAMES! It was heat coming from deep inside me that could not be distinguished by any amount of cold. When the hot flashes came I tried freezing showers, standing in the cold weather outside in my new uniform of shorts and tank top, even rolling down the window in the car with freezing rain pelting me as I hung my head out the window like a drooling German Sheppard! Eventually I stole a dress-up feather fan from my niece that I used until it looked like a badly plucked chicken

The mood swings were just as intense. I would be fine and then suddenly, not fine. The most infamous story is about me sitting on the couch sobbing as my mom and sister stared at me with concern from the kitchen. I was crying over a commercial advertising Bounce dryer sheets, it was something about a mom and daughter skipping through a field? I’m not sure…. It got me good though. Deep down. I don't think I have any buried emotions about laundry products in general, maybe some counseling on this topic would be helpful... 

After 9 months or so of being on the Lupron my doctor decided to take me off of it and put me on a back to back birth control that hopefully wouldn’t allow my period to ever rear its evil little head while continuously taking it. Surprisingly enough it worked for a while, or maybe it was just the severity of the IC distracting me… hard to say…But suddenly at age 19 my endometriosis showed back up with a vengeance and my doctor put me immediately back on Lupron. Full on side effects and all.  As my now husband would attest, I sweat my way through our dating life. Attractive.

Dating my now hubby, he liked me even though I was 20 and  menopausal! 

Fast forward 2 years and you’d find me still on lupron and a happy newlywed on my honeymoon in beautiful Maui! It was the most perfect setting, I had my handsome brand new husband at my side, adorable bathing suits ready to be swum in, tall pina coladas ready to be drunk… and yet I laid in the bed at the hotel a sad fraction of the time in sheer misery. I don’t know why that cursed endometriosis chose then to make its returning debut but it did.

On our honeymoon! Even though I was hurting it was still a once in a lifetime trip and full of treasured memories! 

Two months later my new husband brought me home to our new love nest after my second laparoscopy. My still faithful doctor had now diagnosed me with stage 4, out of 4, endometriosis. Hello life sentence.

I stayed on track with the lupron and endured the sweating and crying for 2 years after that until suddenly I got a fever. Yep, a bad fever that just wouldn’t let up, I had full blown “Iwantababyosis”… Happens to the very best of us. So my doctor that had known me since I was ankle high to a June bug… or however that saying goes… was suddenly talking to me about my chances of having a baby!

Obviously the first thing we had to do was stop the injections and start my dreaded periods back up but the one trepidation was the longer I was completely off any sort of drug to regulate my hormones the more the endometriosis would grow, and with a vengeance after being set free! So he prescribed me progesterone to try to jump start my period and after a short (i.e. Very long) 10 months I had my first period in 4 years. It was the worst week of my life, seriously no doubt, the worst week of my whole life. Dr. Brown gave us intricate instructions on when to um… attempt to make a baby… and we followed them to a T but when it was time to take the pregnancy test a big fat NEGATIVE was all there was. After two more months with the same miserable periods and giant negative results my doctor suggested we try a beginning infertility drug called Clomid. This time he had even more detailed directions to follow but we were rewarded with a POSITIVE!!!

Holy hot biscuits. I was pregnant. I was going to be a mom.

Finally pregnant and so happy to be!

Of course as the next 9 months flew by, I had no endometriosis pains and was blessedly hot flash free… but unfortunately for my loved ones the whole hormone thing was kicked up even a few more levels higher!! I could have saved a thirsty country with the gallons of tears I cried! 

Next thing I knew, at the age of 24, I had delivered a chubby cheeked vision on September 12, 2011. Hallelujah.  Every cramp I had every had was entirely worth it because it made this tiny person possible. My body that had betrayed me in every single way for so many years had given me the best gift I could ever be given. My heart started beating solely for him. What a small price to pay. 

Love at first sight.

In spite of exclusively nursing my little bundle my vindictive period was back within 3 months of my son’s birth and since I was committed to nursing him I refused to go back on the Lupron and settled for the Depo-Provera shot instead. It took about 8 months after starting it for my period to stop again but good riddance. Unfortunately the powers of the depo are only so strong…

Three weeks ago the sweet noise from the baby monitor of my now 17 month old greeting morning with his usual sunshiny joyful babble woke me but before I could even open my eyes cramps stole my breath. I tried to be calm and assess everything throughout the morning but finally I asked my Mom to take me to the emergency room. I was trying to convince myself maybe my appendix had busted or something. Of course it hadn’t… I was sent home saying to eat some bland food and drink lots of water. The next morning the pain was just as intense so I called my pal Dr. Brown and fortunately he had an appointment that very day.

After explaining everything that had been going on he determined the best thing to do was to go back in and see what was going on in there. He explained that ovaries are as sensitive as an eye balls so even if a bit of that nasty endometriosis has grown back it could definitely be the culprit. Unfortunately he was scheduled pretty far out so I've been so crampy for weeks with nothing to do but wait for the day to come that he can laser all that poison off of my body. 

Not feeling good these days but so happy with my little love! 

Thank Goodness that day is finally here! I am going in later today for my 3^rd laparoscopy which is also my 21^st surgery overall. If I remember correctly the recovery isn’t too bad and I should be back to my version of normal in no time, hopefully without the cramping!!

This blog ended up going in a completely different direction than I expected but it was kind of cool to write out my endometriosis story just 12 hours before lasering it off for the third time in 11 years. This has basically been my endometriosis story in a nut shell… if a nutshell was the size of a rather large hot air balloon… Anyway please pray that I get some answers, lots of pain relief, and an east recovery! Thanks for reading, I'll update again as soon as I can! Hopefully with pictures of my mutilated ovaries, cool! 

You are what you eat!

Hey faithful readers! Sorry for my little blog hiatus! Contrary to the norm, I have been taking care of my sick family rather than my family taking care of a sick me! A horrible stomach flu bug has been roving its evil little self around the house! Fortunately I have lots of antinausea meds to ward it off. So far. First it was my Dad who was really sick, then poor Titus baby, even my unstoppable Mom got knocked down for 24 hours, and now my hardworking hubby is battling. So due to him being sick and my usual pain, my parents took Titus to church with them and I finally had a minute to write this!

So about two weeks ago we had my brother-in-law and sister-in-law over for pizza and cards. I had 2 pieces of deliciously saucy, Canadian bacon and pineapple pizza. I didn’t even really think about it. My flares have been so intense lately no matter what I do or don’t eat. So for the most part I don’t worry about sticking to the IC diet. I figure if I’m going to be hurting anyway I might enjoy my one vice, delicious food!

My brother-in-law has severe ulcerative colitis and has been in and out of the hospital over the years, he’s tried every treatment there is and nothing has really helped long term. So after much gentle nudging from his wife he decided to try a Naturopath doctor. Her biggest tip was to stick to the UC diet. Which from what I understand is mainly no gluten, no dairy, and no red meat. So he grudgingly stuck to it and what do you know! It started helping! A few months later he was practically symptom free! On Thanksgiving he shared his hopeful gratitude that he was finally on the other side of his disease. So now, 3 months later, he followed in his beautiful wife’s footsteps and gently nudged me to try sticking to my IC diet for a while to see if it would at least help.

Honestly at first I was like yeah sure sure… I’ll get right on that. After they left I got in the shower and took pain meds and started googling the next treatment steps for IC. According to what I found the only things left is that immunosuppressant drug and then a bladder removal. I did some research on the bladder removal and I REFUSE to do that. Believe it or not, I am actually a really healthy person except for my IC and endometriosis. I do not want to trade the IC for having tons of other health issues including bowel problems. I pride myself in my perfect regularity.

So right then I decided I was going to jump into the IC diet head first! Of course I tried the IC diet down to not a single chocolate chip when I was first diagnosed but that was almost 13 years ago! So I was committed to trying this again!

I went to the store and spent about 300 dollars on restocking our pantry and fridge with IC friendly things. I bought organic, no preservative or additives, nothing prepackaged, no spice and basically food in its purest form. Which is expensive but at least it has lasted us almost two weeks.

I wanted to share my menu with you guys to at least give you an idea of some meals that maybe you hadn’t thought of. I am excited to continue eating like this for my IC but also for me, and my families, general health!

For breakfast I got organic bagels and cream cheese, delicious blueberry bread from a local bakery, whole wheat toast with blueberry spread or honey or just butter on top, also I found some cereals that are IC friendly as well!

Lunch is always my hardest meal… I don’t really like sandwiches except peanut butter and jelly, which is IC friendly with the blueberry spread. So even before I started this diet I usually just end up having leftovers from dinner the night before. I would love to have a salad but I have yet to find an IC friendly dressing… If any one has any good IC salad dressings or other lunch ideas I would love suggestions!

Dinners are my favorite! I love to cook for my family so it was fun getting creative making our favorites totally IC friendly. I made turkey burgers with mild cheddar cheese, avocado and lettuce. I made salmon with coconut rice and maple glazed carrots. Also we had steak, fried potatoes and broccoli in a cheese sauce. The next night I made sautéed shrimp in a homemade alfredo sauce over spaghetti with garlic bread. One of our staples is roast beef in the crock pot so I made that IC friendly one night and served it with mashed potatoes, gravy, corn and homemade biscuits. The next night I used the left over beef to make French dip sandwiches with potato chips and veggies. Also I made a quick sweet potato and ham hash one night. It’s all been really good and honestly I haven’t missed all the spices I usually miss. I basically just use salt and garlic now then put pepper on the table if anyone wants to add it to their own.

For little snack I bought some easy things like string cheese, raw almonds, pears, pink lady apples, saltine crackers that I put peanut butter on, Annie’s cheddar bunny crackers, tortilla chips and plain kettle potato chips!

Of course my favorite food is dessert which I took care of that too so I wouldn’t be tempted by any chocolate that may be lingering. I bought little chewy caramels as an easy little pop of sweetness. For my ice cream fix I got vanilla and I drizzle caramel sauce with chopped raw almonds on top, YUM! I also planned on making oatmeal and peanut butter cookies but haven’t yet.

As for drinks I have been sticking to water and milk exclusively. I’ve never been much of a pop (aka soda us Washingtonians call it Pop for some reason), coffee, tea, or alcohol drinker because they flare me up and I wasn’t old enough to drink them when I was diagnosed with IC so I just never really got the habit thankfully!

When I see it written here it looks like I’m eating relatively normal! So here is the full list of what is IC friendly and IC enemy, http://www.ic-network.com/diet/2012icnfoodlist.pdf.

Basically I can’t have anything that’s spicy, harsh, acidic or not in its purest form. I CANNOT have carbonated beverages, caffeine, coffee, tea, alchohol, juice of any kind but pear (ew), most fruit, most spices, tomato products of any kind, strong cheeses, chocolate, anything prepackaged, processed, preservatives, additives, ect.  

When you are thinking about what you can and cannot have just imagine the food getting onto a cut on your finger. Would you a tomato or an orange squeeze into a fresh wound? No buddy. Our bladders are basically that sensitive! So just eat things that are mild, pure and honestly… kind of bland.

I wish I could tell you I am feeling so much better since starting this diet but honestly it’s pretty much the same but I’m expecting it to take time for my body to rid itself of all the junk! Anyway wish me luck with sticking this out and I would love any other ideas or suggestions you might have!

Thanks for reading! I hope you all have an easy and blessed week!

"Can't get much worse than this"... Insert rain cloud overhead.

How do you wrap up 3 of the most… I don’t even know the word… wonky? days in a row I have experienced in all my 25 years and 9 months of life? Really while I was in it, it didn’t feel like much different than my normal life but now sitting here trying to condense it to one little (okay after reading this over, it turned out really long... sorry!) interesting blog it feels pretty intense... 

Anyway…

Sunday afternoon I had an epiphany. The only thing that has ever really helped my IC is my bilateral (two) interstims. I have had a total of 12 surgeries just on them but the reason why I have put myself through that many is because they do work, when they work! The only time in the 12 years that I have had IC when the pain was under control was when my interstims were working correctly. So I keep trying. I keep hoping that we will achieve the success that we once accomplished with them. Well, I decided to give them one more try, I would call my doctor first thing Monday morning and ask if she would operate on them one more time. I have had them off for 6 months due to lots of “wire migration” and a broken lead on one. I basically had two broken down cars sitting on my lawn. It was time to either fix them or get them towed away!

That evening I started having really bad cramps. All I could do was curl up in a ball with my heating pad. I have been trying to cut back on my narcotics usage so I took some Tylenol PM and hoped a good night’s rest would help and I would wake up back to ”normal”.

Monday morning the pain had nothing but worsened. Yet still my first thought was to call my urologists office about fixing my interstims. I left a message for the nurse and then focused on the weird cramping I was feeling. The random thought kept whirling around in my head... Could I be pregnant? I was late getting my depo-provera shot... Then I started thinking about all the things I had done to this potential baby. Taken several Valium suppositories, pain meds almost daily, and the actual shot! The thoughts were flitting in and out of my mind as my cramps worsened.

The idea of taking pain meds was tempting but every time I held the bottle in my hand I thought but, what if! What if I'm that 1% that gets pregnant on birth control? These cramps felt exactly like the ones I had when I found out I was pregnant with my now 16 month old, Titus! 

So despite the pain I threw on some semi matching, slightly ill fitting (thanks to the dang amitriptyline, I gained 15 lbs in one month. I am so glad I’m done with that junk!) clothes and drove to the pharmacy. I almost got in 3 fairly major car accidents as the pain and emotions distracted me, making my already sketchy driving skills worse. Shaking with nerves and pain I bought a test then drove back in a fog of what ifs. 

At home I forced out a few drips of protesting urine and waited.

Negative. 

I didn't know what to feel. I wasn't surprised by the results but I was surprised by the sadness that enveloped me. We aren't ready for another baby, my pain makes it hard enough to take care of the precious one we already have. Still. There was a tiny glimmer of hope that was squashed faster than it started.

I made myself move past the emotions quickly because I still had the major issue of the excruciating pain I was in. 

Eventually the pain escalated to a 10 and my confused body reacted by vomiting. I knew something was wrong. This was not just my usual IC pain. I asked my mom to take me to the ER and off we went. Dragging a freshly napped and cheerful baby along with! 

When I got to the ER there was lots of talk of appendicitis and my decrepit (freshly padded thank you again amitriptyline) tummy was extra tender to the touch. So the doctor ordered pain meds, fluids, blood work, a urine sample and a ct scan. 

The IV dilaudid worked like a dream and the pain was just a memory as they went about their tests. After about an hour the pain broke through the heavy duty meds. So they doped me up again. Only to hear that everything came back normal and I must surely have some pesky virus! See ya later, don't let the door hit ya!!

I went home with some anti-nausea prescriptions and medicine for cramping that turned out to be an IBS drug? What? 

The IV meds quickly wore off and I was once again sitting in the shower in misery. I popped two Vicodin and waited for sleep. 

Sleep never really came. I curled up with my heating pad all night waiting for the pain to subside. When I did sleep it was full of dreams of the house catching on fire from my heating pad and becoming The Next Food Network Star! (I had a very interesting show, first I did episodes on pregnancy cravings, then baby food, and of course yummy, healthy kid food!  My dream self is a creative genius!) 

When I finally opened my eyes to the adorable babbling of my kiddo over the monitor I was rejoicing that it was actually time to wake up until I realized the cramps were still as present as ever! 

After desperately calling my mom to retrieve Titus, I called my faithful and amazing ob/gyn. Once upon a time he plucked me from my mother’s very womb and then diagnosed me with endometriosis at the tender age of 13! He has been with me through it all and in a circle ending twist, he plucked my son from MY very womb! 

Anyway, I got an appointment with him that afternoon. So I had several hours to kill until it was time to leave. I laid around with my heating pad hoping for a reprieve from the pain when the nurse from my urologists office finally called back saying that my doctor had agreed it was time to fix the interstims and to expect a call from the surgery scheduler. I felt a little encouraged that we were at least going to be taking a step forward with the IC side of things.

My mom was happily willing to drive me to the doctor but she had a few errands to do on our way. The pain and nausea decided to pile in and join us on our ride. The pain was so intense I had sweat beading on my forehead and I rolled the window down despite the rainy, 40 degree Seattle weather.

After my Mom’s checklist was complete we headed for the doctor’s office. I was taken right back with hardly a moment of waiting. My loving, albeit older, Pierce Brodson look alike doctor came in with a genuine sympathetic smile. It was never good news when I was there. We chatted about the pain and he surmised it was probably my endometriosis back with a vengeance.

His conclusion was that he really needed to go in there and see what's going on. It has been 4 years since my last laparoscopy so it seemed like a good idea to me too. It’s just an outpatient surgery with three tiny incisions, they use a scope to look at my uterus and ovaries then laser off any endometriosis growth. OF COURSE my luck continued and he is booked next week and out of town the next so it is scheduled for February 27^th, 3 weeks away. He did prescribe me some dilaudid and said to just try to hang in there until we can get this beast under control.

Today I woke up with the cramping still pretty intense and my usual IC pain pitching a fit that it was being forced to take a back seat. I took dilaudid first thing this morning and have been loafing around watching old “Friends” episodes with my reliable heating pad. Then my urologists office called and scheduled the interstim surgery for March 18^th.

Sorry to have such a long and dreary blog… sometimes my life is such. Although this might be a hard several weeks ahead I am hopeful that the surgeries will lead to some answers and mostly, some well needed relief!

 To end this on a happy note I must share with my lovely readers a little story about my adorable son! One of his favorite things is to get in the shower with me. We have lots of toys and even books in there, we blow bubbles, brush our teeth, play with squirt guns. It’s so much fun for both of us, and a happy break for me! For some reason he likes to straddle my tummy and sit facing me as we enjoy our shower time fun but with these new cramps his almost 30 lbs of pure, sweet baby on my tender tummy is pretty painful. So this evening while he drummed on the shampoo with my toothbrush, I laid my head back and closed my eyes, just trying to get through the pain. When I opened my eyes he had his tiny pointer finger up to his pursed lips saying “shhhhh”! I died. It was the sweetest thing I have ever seen. I try not to show him my pain but even in the midst of it he makes me laugh and feel overflowing love. Here is a picture I took of him this morning just so you can get a glimpse of my treasure!

Hope we all can enjoy the little things in life among the physical and emotional aches of this horrifying disease! Love and daily prayers to you all!