Stop taunting me blinky line. I’m going to start typing… I’m
just thinking… Stop it! Well that’s a losing battle. Ok fine. I’ll start.
It’s been a while since I’ve updated my blog but I have a
valid excuse (I could get a doctor’s note if you need proof), I am not being
too dramatic (maybe a little dramatic but not as much as usual) when I say that
I have been fighting for my life the last two months. The last time I posted I
had just had my suprapubic catheter put in and had a horrible case of food
poisoning.
You probably would have thought it couldn’t get much worse
than that, I know that’s what I thought. Well my dear reader, we were all wrong.
I got the worst UTI I’ve ever had in my life two weeks after that. I think the
problem was that I wasn’t voiding on my own so I wasn’t feeling the early signs
of the infection. So by the time I knew I had this UTI there was no regular old
oral antibiotic that was going to clear it up.
It was a Friday when my Mom took in my urine sample and I
started the antibiotics. I had done an at home UTI test which was glaringly positive and my urine was thick,
chunky and reeked. We all knew I had an infection and it was really bad. So
even though we didn’t have the culture results my doctor called in some really
strong antibiotics and I started taking them right away! Even with that by Saturday
night I was having flank pain like I couldn’t believe. That, of course, meant
that it had moved to my kidneys. My pain was a 10 on a scale of 1-10. (I hate
it when people (including myself) say "on a scale of 1-10 my pain is 1000". That’s
not on a scale of 1-10. So it’s an invalid answer.)
As the pain escalated so did other strange symptoms that
quite frankly scared me more than carrying a loaf of bread through a bird
sanctuary (if you know me, you know that means I was really scared). I had a
fever, I was shivering and sweating, I was so weak and could barely keep my
eyes open, I was brutally nauseous and felt sure I would vomit at any moment. It
was Saturday night at 10pm so I called the doctor on call for my urologist’s office.
The doctor who was on call was one that I had never met so he asked me
to spell my last name. I started spelling, J-O-V… then my mind went totally
blank. I can’t even explain it more than that… But I just shook my head as I
started to cry. My Mom took the phone from me and finished the explanation of
all my symptoms.
Right away the doctor said I needed to go in but then
continued to ask more questions. After each answer he would confirm that I
needed to go in. Then when my Mom told him all the hardcore antibiotics I had
been taking for two days and my symptoms were getting progressively worse he
told her to hang up the phone and take me directly to the hospital.
I live in a small rural town, (bear with me, this isn’t as
random as it seems) the kind that you know you’re in when the scent of cow pies
swirl its way into your car vents as you enter the city limits, and there is a
small hospital with an “emergency room”. I use that term very loosely. There is
never any wait to get into a room and be seen by nurses and a doctor. It’s nice
and clean but really small and all the staff are suspiciously young. They are
all super nice but something tells me they aren’t used to complex cases of
anything. We are just 30 minutes from a skiing area of Mt. Rainier so they are
prepared to triage for extreme cases and are used to taking care of basic
broken limbs but anything complicated is tricky for them. Even though I know
that they won’t understand the complexity of my problems, almost every time I
need to go to an ER I end up there. The allure of the immediate care and the 3
minute drive is too tempting to resist. I think I have finally learned my
lesson.
Anyway, they ended up admitting me and I spent 2 ½ days in a
live episode of some sitcom featuring a small town hospital that has no idea
what they’re doing. Again, they were mostly really nice. They just didn’t know
what to do with a 26 year old girl that looked healthy, had “just” a UTI and kidney infection, claiming horrible level 10 pain, was asking for an excessive (in their mind) amount of
narcotics and had a suprapubic catheter.
So Monday afternoon I asked them to discharge me and my
husband picked me up and drove me to the hospital my urologist works out of 1 ½
hours away. She set up a direct admit so when I got there they had me sign a
few papers then they whisked me off to my room. They got me settled and treated me with such kindness and respect and FINALLY treated my pain as it needed to be. That evening my doctor came and visited me
after her regular day at her office and she set up a plan. She got me on a
better antibiotic that the infection wasn’t resistant to and I wasn’t allergic
to, set up wound care for my SP tube site that kept re-opening and tearing, set up a plan to sufficiently keep
my pain down, got me on a regimen to relieve my extreme constipation and set up
some specialists to come visit me too.
I went from a bad episode of Scrubs to an excellent episode
of House.
A week later I was discharged, I left there better than I
was before the raging UTI started. They set me up with a home medical company
that showed up the next day with a delivery of equipment and the lidocaine
medicine to do my own bladder instills 3 times a day like they were doing in
the hospital. Also my doctor wrote me a realistic prescription for enough pain
medicine to get me through to the next stage of my IC journey (which is what
this whole blog was supposed to be about).
When my doctor came into my room the day she discharged me
she sat down with a sigh. I think after getting reports, hearing from the
nurses and other doctors, reading my chart, and seeing me in that setting made
her really realize how bad my IC had become. Some time last year she deemed my IC, "End Stage" which just means there isn't anything else they can do for it. Since then my doctor and I have talked about the reality of literally cutting our losses and giving in
to this disease. She had really wanted me to try cyclosporine, an immunosuppressant
drug, but now that my bladder had stopped functioning all together that isn't an option
anymore. The only hope for that drug would have been for the pain.
My bladder is the problem. No matter what we do, I still have
horrible pain in my bladder and it does not function as it should. It never
has. I’ve always had incontinence and retention but never to the degree that I
have the last 2 years. It used to just leak or retain a bit but now my bladder
just empties itself whenever and wherever it pleases and now I cannot depend on
it to release any urine at all on my command.
So. My bladder isn’t functioning and the pain is off the
charts. I’m taking more pain medication every day than a large elephant would
like while giving birth. There is only one thing left to do. Take this diseased
dysfunctional organ out.
This morning my Mom, husband, and I are going to see a surgeon
that specializes in bladder removal and diversion. I’ve tried to do as much
research as I can and write down all the questions I can think of. I
am as prepared for this appointment as I could be. There are a lot of ways of
doing this and I don’t really understand all the options and differences but
that’s why we are going to this specialist.
The one thing I do know... This isn’t a trial thing that I can just reverse if I don’t
like it or it doesn’t work. This is final. This is huge. This is the biggest
decision I will probably ever make.
No pressure.
I wish I had more to tell you about this but truly I don’t
know much. Even smack dab in the middle of the Google Era I can’t find much
information about it. All I know is there’s lots of ways of doing it and it’s
going to be a pretty involved surgery no matter which one but that this doctor is the go
to guy for these surgeries in the state. Also that he does surgeries robotically, I don’t
know if that’s valid for me but it’s interesting. He is also a professor at UW.
Oh and he likes tennis. And has brown hair.
So, please pray for us. That we find out more information. (Now
that I know he likes tennis I’m probably going to make some lame joke about not
getting tennis elbow before my surgery… great.) We really need more information.
Also that we walk out of there informed not just totally confused by the mass amount
of information we suddenly have that we didn’t have when we walked in. (Other
than the brown hair.) Then that we can use the information Dr. McEnroe gives us
and God’s direction to make the right decision.
If I have the surgery it will change my life no matter how
it goes. I could potentially be well, pain free and even live a normal life like
I haven’t since I was 12. (Not that I want the life I had at 12, it was fun but
I’m really ready to live an adult life without pain… I don’t even know what
that’s like! The last time I was pain-free hemp and string were considered the
jewelry material of choice and a bare midriff with baggy jeans and doc martins was high fashion
to me.) I suppose the surgery could probably go badly too… I don’t even know what the worst case
scenario of this surgery would be? Worse pain? The same? Adding digestive
issues to the list too? See, this is why we are going to the doctor tomorrow…
and why we need prayers. See the number of question marks I’ve used in this
blog?!?! Have I mentioned we need prayer?
I’ll update you all as soon as I make a decision. I know
this is a controversial thing in the IC world so it’s important to know that I have End Stage IC and I
have literally tried every single treatment (other than cyclosporine which I
mention won’t work for me at this point), it’s been 14 grueling years of trying
so many different things. Surgeries, oral medication, strict IC diet, suppositories,
instills, interstims, naturopath options, physical therapy, massage, acupuncture,
and probably even more that I can’t remember right now. I have been optimistic,
pessimistic, encouraged and disappointed. I now have very low quality of life;
I’m in bed 90% of the time. I have a catheter 24/7 that my family has to help
me care for. I can’t parent my son at all. I can barely be a wife, daughter,
sister, aunt, granddaughter, niece, or friend. The narcotics make my fuzzy and
totally unlike myself but it’s better than what the pain does to me. It is time
for drastic measures.
I will update you all as soon as I can, sorry for the
excessive length of this blog I just have so much to say apparently. My fingers
are tired and I keep accidentally knocking the scissor like clamp that’s keeping
my instill inside my bladder. So I’m going to do a quick read through but most
likely there will be grammatical and spelling errors that I would typically
mock others for but I just don’t care right now. I hope you all still love me.
Speaking of that, thank you all for your love, prayer and support for me and my
family, whether I’ve known you my whole life or if we’ve only just met or if I
don’t even know you, you are playing an essential role in my journey.
My appointment is at 9:30 tomorrow. So if you think of me
any time before, during, or after that… A prayer for an answer, clarity and
peace would be glorious.
I always like to add a recent picture to my blogs to show
the happiness amongst the struggle. This one shows that though my heart breaks
when I think about the fact that I’m not raising my son right now, he is so
lucky to be spending time with so many wonderful people in our family in my absence.
Whether you know them or not you can’t help but smile at this picture but since
these two are amongst the most loved people in my life I can hardly stand how
much I adore it. It makes me a speck less sad that I didn’t know he can now eat
raw carrots without needing the Heimlich maneuver. Over and out!
