The patient Patient

You've heard the old joke from a spry old chap in the waiting room at the doctor’s office, "now I know why they call us Patients" followed by an air rib jab, an "eh?", and chuckles that confirm the multiple number of times he's said that same thing in that very room. 

But lord have mercy that little stooped feller probably named Jasper had it right! If we are mere minutes late for our appointment they read us the late/cancellation policy that's posted in hard to miss locations and that we've signed dozens of times. But! We all know their schedules are as loosey goosey as... Well... A loose goose! Yikes! 

I have been forced to be a “patient patient” a lot lately. I have been in IC treatment purgatory for the last month and I am about to start spitting! (Apparently people spit where they're mad? I've never personally seen it except by Daffy Duck but you never know who I might turn into when my kettle gets cookin'... Or maybe a llama but I think they always spit no matter their mood.) 

My beloved doctor has mentioned this new treatment she's been thinking about trying with me for the last few months but since it’s what she referred to as "an end stage treatment" she wanted to be sure she had exhausted all of our other options. The treatment is a medication called Cyclosporine and it’s an immunosuppressant. 

The last time I was at her office feeling a bit defeated and a bit fat from the stupid amitriptyline she realized it was probably time to move to the next step. She handed me a green file (which reminded me of a peachy, who's with me?) that had a checklist of things to do before we could start the medication. 

Let me remind you of my severe lack of medical knowledge and my Internet exclusive education on most IC related topics. Please bear with me as we trudge through the muddy next few paragraphs.  Here we go!

There are some theories that IC is an autoimmune disease. Which I think means our bodies are attacking themselves! Therefore suppressing some of the immune system could hypothetically, potentially, maybe, possibly, help our IC symptoms! 

However we need our immune systems to fight off any bad things that might enter our bodies like infections and germs. So inside that peachy like folder they have a whole protocol with 6 steps that you have to go through before you can start this hardcore drug.

Step 1, receive clearance from your primary care doctor ensuring that you don't have any kidney or liver impairment, uncontrolled high blood pressure or infections, immunodeficiency or any malignancy within 5 years. (Which I don’t have any of those things thankfully!)

Step 2, you must receive the Zoster vaccine. (I don’t need this because I had shingles last year… yes I acknowledge shingles are for old people… tell my body that!)

Step 3, document baseline blood pressure and blood work. (I always have perfect blood pressure, not to brag or any thing.)

Step 4, fill out a bunch of questionnaires about IC symptoms. (I secretly love filling out forms, especially if it’s the kind with the bubbles that you have to fill in with a #2 pencil!)

Step 5, read a bunch of info about the drug and IC. (I apparently haven’t read enough about IC over the last 12 years.)

Step 6, sign the consent form. (After 4 ½ years of marriage I still can’t get my new signature down, it’s just so long my hand cramps half way through.)

SO I have completed step 1-3 and am waiting to hear what to do next from my urologist. I guess I should just fill out the forms and read the papers… hmm one would think I would have figured that out before now… Either way, I am waiting to hear if they got the results from the blood work and if we’re going to move forward in the process.

Meanwhile my new primary care doctor referred me to a pain management specialist. They have sent in the referral two times and I've called two times as well but the pain doctor’s office keeps saying they haven't received any thing. So my doctor’s office is sending it again... Then when they do finally get it they will probably be booked several months out and I’ll wind up patiently waiting for my appointment day to arrive.

So I wait. Do you know how patient I am? Not at all. Ask my sister. (Pretty much any time you are weary and wondering if I'm really as whackadoodle as this blog portrays me to be my sister is a great witness! Oh and also she has lovely ears for flopping if that helps you in a flare, maybe not as floppish as my Moms but definitely 2nd best. Surely I'm not the only one that flops their loved ones ears when they're hurting! Oh, I am? Weird.)

Anyway again! (Oh boy this is a random blog post! What was in that licorice I just consumed! Oh and speaking of that I'm still on the amitriptyline and still gorging away. Only 5 days left! I don't even want to know what weight I am at!)

A-n-y-w-a-y... I'll be here being the perfectly patient patient if anyone needs me... Just doing some whittling or whatever patient people do... Let’s be honest I’ll probably be eating and watching reality TV… (Am I the only one that cannot stand Tierra on the Bachelor?) 

Size... I mean, Side Effects

Over the 12 years of having this dreadful disease I have tried amitriptyline a few times without results but my doctor wanted to try it just one more time before we pull out the big guns. I'm on my third week of taking it and now up to 30mg a night. My doctor wants me all the way up to 50mg so that means at least another 2 whole weeks like this!

The side effects of this drug are so obnoxious! I am starving all the time, I am gaining weight like crazy and my mouth is dryer than the hot winds of Africa!

The worst part is the pure starvation and desperation for crap food. I seriously feel like I've been lost as sea surviving on dried kelp and raw fish that I caught using a strand of my hair and a hook I made out of a toe nail.

You think I am joking… but seriously! Every hour or so it's like my homecoming to land and I feed myself with a desperation previously only known to animals. 

Oh and I'm not craving healthy thing... No buddy. Ice cream and chips are the only things that will satisfy this inner starved beast. 

Fortunately, or unfortunately depending on how you look at, I eat our stock in both the day we get it so I go for days moping around gnawing on saltines and sucking hard candies to appease my desperation until some one takes pity on me and goes to the store. 

I have struggled with my weight the last few years and I just got it close to a place that I was happy with and now this?!? In the 3 weeks of being on this dreaded drug I've gained 8 whole pounds! What! I didn’t even know that was possible!

My doctor said if it doesn't start working soon and the bad outweighs (pun totally intended) the good to just go ahead and taper off of it. But she was also the one that says to "not give in to the cravings" so what does she know?! You try fighting back a starved inner beast when all it wants is a mere puffy cheeto or two! (It's the whole bag lets face it.)

Here's the thing, I'd rather be as big as a barge and be pain free then svelte and in misery but I don't want to add issues to my health and add poundage to my beautifully striking figure for nothing. (ha.)

The other issue is it makes my mouth so dry!! Like the whole lost at sea thing again! No matter how much water I drink its just so dry! Plus that goes against my infamous theory of drinkativity, (it’s a thing).  I dehydrate myself every day. Not entirely intentional but I have this woebegone theory that if I don't drink water I won't have to pee as often. I would rather pee a few times and have it hurt worse from the concentrated urine then dozens of times and have it only hurt moderately. So I deprive myself of water... You don't need to tell me how horrible that is... I've heard it from every one and in every way. 

Anyway, every morning I wake up hoping that this is the day it starts to help but if I don't see results soon its adios muchacho!! 

Okay I've got to go unashamedly gorge myself with ice cream now... Thanks for reading! 

  

Happiness.

I know this blog is supposed to be all about IC and how to cope with the everyday trials of dealing with this debilitating disease but I just had to take a break from it to post this! 

I am addicted, I mean seriously sign me up for a meeting addicted, to Pinterest.I planned most of Titus’ first birthday thanks to Pinterest and I suddenly realized I only have 9 months until his 2^nd birthday and I better get cracking! So here I am perusing when I suddenly realized I never posted the pics from Titus’ Birthday on there to inspire other Moms like me!

So even though Titus is now almost 16 months I figured it’s better late than never!

Our theme was balloons and the primary colors. I went for the theme full on! 

The games we played were: Pin the ribbon on the balloon (I just taped a balloon cut out on a poster board then we played like pin the tail on the donkey), balloon darts (I tacked tiny balloons onto a cork board that we covered in wrapping paper then had the kids throw the darts at the board), and hot potato balloon (just like hot potato but with a balloon, this one was fun for the younger kids)! We also had a little jar filled with deflated balloons and people wrote their guess of how many were in there. 

We decorated every inch of the backyard with balloons. We used around 300 balloons, some we inflated with air and some with helium. We strung some on fishing wire between the house and pool house, we had some hanging like a chandelier over the cake, and we had bouquets of balloons every where! We also had balloons going all the way down the long driveway, you definitely were not questioning what the theme was! 

There was also a photo booth with a backdrop of balloons and we had painted two frames white then one we added polka dots and one we tied lots of multicolored ribbon all over. 

We had a picture of Titus from every month of the year hung over the drink table. We put the photos on colored paper then glued thick rainbow ribbon on the backs of the paper and hung them on white ribbon. 

On the drink table we used a red plastic tablecloth and striped rainbow wrapping paper as a runner. We had frozen water balloons as the ice for juice jugs in the bucket. We also had red punch and water in the glass containers. Also we had mason jars full of rainbow colored candies- M&M's, skittles, gum balls and hard candies. 

For the favors I bought colored lunch bags and filled them with a cute coloring page of Mickey Mouse and balloons, crayons, a sucker, a punch balloon, and a beautiful custom made balloon cookie. I attached a tag that said "Thanks for Popping By" with some fun rainbow ribbon! 

Of course the crowning jewel for any birthday party is the cake! Our family friend Shannon Ross made his beautiful cake! It fit the theme perfectly and was delicious to boot! I especially loved his cupcake on top, it was the perfect amount of cake for my little guy! 

Of course Titus had to be dressed in the theme too so I ordered this adorable shirt off of Etsy! He looked absolutely precious and  I'm so thankful for Eye4images Photography who captured the day for us all!

 If you have any questions please don't hesitate to ask! Happy Party Planning Pinteresters!

Sorry... TMI?

Warning: this may contain content that could be disturbing or at least awkward for some of my loyal family member readers! Feel free to continue reading, I have no shame, but don't say I didn't warn ya! 

After weeks of misery and no relief I finally decided to give the vaginal Valium suppositories a try! I am the worlds cheapest person and the idea of spending 74 dollars on some thing that may or may not help was a... Hard pill to swallow... (Heh heh) but I wanted relief more than I wanted to be frugal. So my devoted hubby went to the fancy compound pharmacy and picked up the suspicious brown lunch bag. 

When I got it I had no idea what to do so I posted on an IC board and got some great tips and also had a few people ask me to let them know how it works. So I decided to document my first three experiences using it for all of the IC, Vulvadynia, and PFD sufferers out there. 

January 3rd, 2013

9:05AM- The insertion was a lot easier than I expected. My vaginal muscles kind of just did the job for me once I got it in there. I read that I should lay down for about an hour after putting it in so I'll be lying in bed with my legs up if anyone needs me. 

9:38- I don't know if it’s from going to bed super late and now laying in my cozy bed or if it’s from the suppository but I am suddenly really tired! The pain hasn't subsided yet but I can feel it melting in there like a Popsicle on a hot day. 

9:42- Owie! It's starting to burn as it seeps out a little bit. I have some open cuts down there so that may be why… 

10:01- Oh my goodness, the urethral pain is miraculously gone! My bladder is still aching but the constant burning in my urethra that makes sitting and closing my legs painful is nowhere to be seen!! 

10:56- I tried getting out of bed to do a little bit of cleaning and within minutes I felt it making its way south and dripping out. Weird.

11:06- Back in bed with my legs up in the air. The pelvic floor and urethral pain is still gone!! 

11:50- I tried to get up again but it just turns me into a disgusting sort of dripping faucet! 

12:13- Sudden intense cramping in my lower abdomen. It feels like bad menstrual cramps! 

2:06- Well I went pee. It hurt like normal as I went but the post-pee-pain wasn't as horrific as usual. I'm still having bad cramping that comes and goes. I'm going to get in the shower and see if that helps! 

2:51- After being in the shower for almost an hour the urethra pain is coming back. I don't know if it’s wearing off, it's been washed away, it's all dripped out or if the pain is just breaking through but it's annoying! 

 So I have to say this day has been inconclusive! I'm definitely thinking I'll try it at bedtime next time because the dripping was obnoxious. One of the many weird things that goes along with my IC is that I can't stand wearing underwear! The waistband hurts my bladder and the mere presence of the tight fabric on my lady bits irritates it. So the vag drippings were extra annoying. I spent the day sitting on a towel after realizing it got all over my sheets. 

The cramping could have been coincidental but it felt like period cramps which I rarely get these days since I get the depo shot. I am rejoicing that it helped my urethral and vaginal pain though! After this first trial I think it’s going to be a great tool to have in my IC tool box!!

Trial number 2

January 4th, 2013

Well... My hubby and I had um... marital bonding time... this evening. Now I'm in the routine torturous pain that follows. So I decided to give the Valium another try! It is late at night so I'm hoping the dripping won't be as bad and if there's cramping again it will just be after I'm asleep! Here goes nothing!

10:32PM- Another successful insertion, the pain is so bad that I did it while in the shower and I am just hoping that I can get out before it starts melting! 

While we're on the edges of our heating pad and tubs waiting to hear what happens let’s just talk about IT. I know we're all thinking about IT. I think IT is one of the hardest yet least talked about subjects in the IC world. Doing IT is really, really painful for us with IC. IT is such an important part of marriages and yet IT is the single most disruptive things we can do to our pathetic pelvic floors! 

The actual act of doing IT can be tolerable if certain rules are followed. However some times in the moment the rules are out the window and I'm the one that pays. My urethra is my greatest foe and yet it lays just mere centimeters from the uh... entrance and the bladder is propped right above. So any pressure in the wrong direction and the wrong kind of fireworks erupt.

So if you could imagine IT isn't easy but after 4 years of practice we are getting the hang of IT. The most important things are to make sure to use lots of lubricant, avoid the previously mentioned areas, and to take things slow. Also know that every time is different and you just have to be patient. Something that hurt last time might be fine this time and something that usually is okay could feel like blazing daggers. You and your hubby have to take time and try different things.  Also, be open to the fact that sometimes IT’s just not going to happen. Honestly my husband is just as happy with a back rub while he watches a new episode of Duck Dynasty. Maybe not JUST as happy but you know…

However! No matter how bad, tolerable, or good IT goes the post-relations is always misery. If I can plan ahead I take pain meds before but if not, my first act is to take meds then head straight to the shower. My bits are always very swollen after IT and the burning is shocking. Like I check for flames and have the fire extinguisher ready.

Anyway... Back to my Valium diary.... 

12:22- Still no relief. It's still burning like the fires of hell!! 

12:50- Cramping is starting!!! 

Sunday January 5th, 2013

8:08am- Well I just woke up... I must have eventually dosed off despite the pain last night. I just had my morning pee and it was just as painful as ever!! 

So I will say I definitely didn't like the night time theory. I feel like I just wasted $2.46. By the time it kicked in I was already asleep and when I woke up it had already worn off. Oh well… it was worth a shot!

Trial 3

January 6th, 2013

I’ve been in the shower since 8 this morning and I need relief so I am going to try it again!

1:18PM- The insertion went ok, I decided to put it in while I’m in the shower again but since I was sitting I didn't feel like it went in as far as before. 

1:22- I am already feeling it melting and the urethra pain seems to have eased! Wow that was fast!

1:23- I stood up to get out of the shower and felt the thick, warm goop oozing out so I quickly ran to bed with my legs shut and laid on a towel! The urethra pain is gone but now I feel confined to bed because of the dripping. 

Side note- I did talk to my doctor today and she mentioned that I could leave it out of the fridge until it kind of melts and then apply it more like a topical medicine around the areas the hurt! I'll have to try that next time! 

2:14- I am having some cramping but if I keep the heating pad on me it is tolerable. 

2:30- The original pain is still gone so I took my towel and my heating pad downstairs where I made a nice little nest on the couch. It's great to have the pain gone and be out of the shower, it's just a bummer that I'm finally feeling good and have to stay lying down. 

5:12- I had to get up to get my kiddos dinner ready. I walked around like a Barbie's whose legs have been tied together. I still couldn't put on any underwear or pants so I waddled around in my robe trying to keep from dripping on the floor. EW!

6:01- The pain is back, headed to the shower! 

Well after three different scenarios I do totally acknowledge that it works amazingly! It erases any pelvic floor or urethral pain I'm feeling which is generally what keeps me in the shower. 

However it does cause moderate cramping and the whole dripping thing is difficult, especially if there are any cuts. The valium getting into the open cuts is brutal but I would much rather be stuck on a towel with a heating pad and tiny paper cut burns in bed than in the shower writhing around in agony! (Drama!)

I think my third trial will be how I use it most often. If I've been in the shower for a while with no other hope of escape the Valium seems like a great option! If I'm going to be useless and stuck somewhere it might as well be the couch and in less pain!

So my recommendation is to give it a try! The urethral and vaginal pain relief alone is worth all the hassle!! 

If you have any other questions, don't hesitate to ask! I'm an open book… as if you couldn't tell already!

Cheers!

Happy New Year readers!! 

I always find myself hopeful on January 1st, so much potential and endless possibilities for the year! I'm excited to see what 2013 has in store for me, my family and the IC community!

In spite of the fact that 2012 was an amazing year it kind of ended with a hard weekend. Over just 3 days I spent around 25 hours in the shower. The pain was extraordinary as I tried relentlessly to empty my stubborn and full bladder. So yesterday, on the morning of New Years Eve, I found myself at my trusty Urologists office desperate for answers. Well… did I get some answers!

As  I told my urologist, Dr. Jacoby of Urology Northwest, about my shower marathon weekend she prescribed me Demerol for when the pain is extremely unbearable, put me back on amitriptyline just to be sure it doesn't help and decided to do a quick bladder scan to determine how much urine I was retaining. I was excited to have proof and validation of the horrifying retention I had been struggling with.

I attempted to empty my bladder before the scan but unsurprising the usual drips were my only reward. As the nurse pressed the bingo-dobber-looking-thing on my bladder and it clicked like a friendly dolphin the pressure induced pain convinced me of the presence of excessive urine in my bladder. 

As I wiped the gel off my tummy the nurse casually said, “yep… it's empty!” 

My world stopped. What?? My thoughts ran 100 miles a minute, some of these high speed thoughts came out "It's empty?? But I barely went and what about the full throbbing sensation in my bladder?? Are you sure??" The nurse replied confidently "0.0 ml in your bladder” and furthered the proof by showing me the results on the old school computerized screen. I was shocked... I don't even remember what I said but the nurse called me adorable... I wasn't trying to be, but who doesn't want to be titled adorable in any situation.

The nurse told us we were good to go but the doctor stopped us on our way out. I just looked at her (probably a little creepily) and said, “It’s empty… I’m shocked.” She put her arm around my shoulders and said simply, "I'm not. Now stop trying so hard to pee, there's nothing in there."

I numbly walked out of the office mumbling different versions of “I can't believe it.”  This new discovery made me question my whole life and everything I thought to be truth. I was 100% sure there was urine in my bladder. 100%. I was also that sure I loved steak and potatoes, was I wrong about that? Am I really a green leafy vegetable kind of girl? What about my dedication to saving worms? Have I wasted my life moving those defenseless slimy creatures out of harms ways and into a nice dirt filled planter?? What about my raging fear of birds? Are they really gentle creatures undeserving of my terror? I don’t know anything for certain anymore!

So now how do I know when I do have to pee? Do I just go every time and then assume that after I go, even if its mere drips, that I released all the contents of my bladder? So does that mean I actually DO have frequency? I thought it just took me forever to pee the one batch but maybe it’s that I do empty and then I have to release the new pee as soon as it enters? I’m so confused!

Don’t you know this is why I spend hours in the shower? Because the heat eases the pain and I THOUGHT it allowed me to finish emptying my bladder. A heating pad helps but I've always been scared I would have an accident because I thought my bladder was still full. 

My mind is blown! Have I wasted 12 years trying to pass pee that isn't even there!? 

On Saturday I almost cath-ed myself but the fear of the post catheter urethra pain was more fierce than the current pain. By George aren't we glad I didn't! There was nothing even in there!! Mind blown. 

I guess I can look at this as a positive thing! I don’t HAVE to be in the shower. It does help the pain but other than that it’s not helping me pee because I don’t have to go! Also, just the fact that I don’t have retention is stupendous! I am just so confused! I feel like I am starting over with my IC. How do I treat this now that I know it’s just pain and maybe frequency but not retention? I guess there was no better time than New Years Eve to find this out! I am starting 2013 with a plan to change up the way I deal with my daily IC. No more narcotics (thanks to the allergic reactions, see last blog) and no more showering for hours (because apparently it doesn’t help me pee).

So I raise my room temperature, sip of water in a blue plastic cup and say here’s to new beginnings! Here’s to having your mind blown! Here’s to making the best out of things! Here’s to being optimistic! Here’s to life! Here’s to the New Year! Cheers!