B String Symptoms

I've been sick for a really long time. I'm 28 and I first starting having symptoms when I was 12 so that means I've been sick for more of my life than I've been well. I don't even know what it's like to be a "normal" healthy adult. 

At first I just said "my stomach hurts" because at 12 every thing in that general vicinity is your stomach. After ruling out anything GI related my pediatrician sent me to a gynecologist at the incredibly tender age of 13. Though I went to dire straits to boycott this terrifying appointment, it ended up not being so bad. After medication and eventually a laparoscopy I was diagnosed with severe Endometriosis. Before my beloved ob/gyn retired last year he said he never did see another case of such a young girl with such aggressive endo. 

Anyway. After another year of treatments I started noticing the symptoms were changing and I was also having urinary symptoms. So at 15 we did some rounds to find a good urologist who would take me on with my complicated symptoms and age. Finally we found a good one.

She quickly diagnosed me with interstitial cystitis then we began the arduous journey of battling IC. 

Symptoms came and went, treatments helped and failed, there were lots of highs but even more lows. 

We blamed any weird, seemingly unrelated issues on medications or just my body fighting back after years of pain.

Things spiraled out of control until I found myself 28 years old with no uterus, ovaries, cervix, bladder or urethra. The doctors had run out of treatments so the only thing to do was remove the diseased organs out of my otherwise (seemingly) healthy body. 

There were side effects and complications as is expected of major surgeries and reconfiguration but we kept moving forward expecting these bizarre, write-off symptoms to go away eventually. 

And yet. They didn't. Here I am a year after my last major surgery and I'm still struggling man. I have all these symptoms that I never focused on because I had bigger, badder things to worry about and it was easy to brush them off after dousing them in blame from other things. 

I was literally taking a bucket full of medications just a year ago but now all I take is a half of a Valium for muscle tension and 2 Benadryl for nausea and to help me sleep so these random things can't be blamed on meds. (Admittedly I did just stop taking hydroxazine as needed for nausea and I took off my scopalamine nausea patch to see if that helps with these creeper symptoms.)

I'm still having nausea and diarrhea daily which can be shooed away with the fact that I had two intestinal surgeries within one year. Oh and I'm gaining weight faster than a Jr. High wrestler trying to hit the next weight class. 

Then I have weird ghostly symptoms like urgency and the feeling of a full bladder even though it's literally an empty cavern in there... Occasionally I have horrible urgency like I have to pee, sometimes I will go as far as sitting on the toilet or taking a shower to trick my body. I also get regular flank (kidney) pain and swelling. These all might be phantom pains but they could also be signs of UTI's... Yes you can still get a UTI without a urethra or bladder. If you want more info about that, give this blog a quick gander... 

http://how-ic-it.blogspot.com/2015/09/i-planned-on-writing-blogs-detailing.html

I also have occasional fevers, thick, rank urine and unsatisfiable (I think I made that word up but I like it) exhaustion. No clear explanation for that.  

Then! I started really noticing a symptom I've had for years but have always blamed on medication or treatments. However I wasn't on those anymore and I was still having these crazy episodes. It usually starts with my toes, they curl up and spasm in all sorts of wonky ways. I try to make them do it on my own when they're relaxed but I physically can't make them do what these spasms make them do. All my toes go in different directions, one twitching while the others stay stiff, etc...  It's like they're possessed. Then it travels up to my calves creating horrendous Charley horse like spasms. 

Then I started noticing how regularly at least one part of my legs and/ or arms are numb or tingling. I have always blamed that on bad circulation or whatever and never paid much attention to it but once again, these little things starting sticking out to me. 

I wasn't too concerned about these seemingly minor things until I started falling. That's right, I am just minding my own business standing or walking when suddenly my legs give out and I'm on the ground. It's not a big dramatic fall from some Melissa McCarthy comedy. I literally just drop down like I'm in the ghetto hearing gun shots. 

My hands also have had weakness causing me to drop my colored pencil mid color while coloring a bright jungle scene in my grown up coloring book... Don't get me started on my increased inability to open barely tightened bottles. In the ghetto. (I liked the previous ghetto mention so I'm going with it... keep up.)

So what's a girl to do?! I went to my primary care physician who has always been great! He treats me with respect, knows I'm not a drug seeker (he saw me wean from 25 morphine a day to 0 in 6 months on my own), and he knows how much I want a real life. So when I presented these "new", actually old just ignored, symptoms with tears in my eyes I expected a light bulb and an instant theory that would not just explain the recent additions but the last 16 years of constant health issues. 

Not so much.

He kind of ho-hummed for a while, reminding himself out loud that I wasn't crazy and then said he really didn't think it was anything neurological but it was worth testing. For the first time in his office I started to get that horrible, humiliating creepy feeling that I get when healthcare professionals start to categorize me as a kook when he brazenly mentioned an antidepressant. 

If you know me or you've read my blogs before then you know how Ludacris (yes I know it's spelled ludicrous but I'm a millennial and early 2000's hip hop (not to mention The Fast and The Furious) will forever live in my soul)  it is that I would need an antidepressant.... It would literally be like giving a chubbier, less glamours but equally spunky and snarky Miss Piggy antidepressants. Some how I feel like my husband might disagree with that comparison... Comments babe? 

Anyway! When my PCP saw the panic, fear, sadness, defeat... Whatever flashed in my eyes when he gave that offensive offering of antidepressants he quickly said first we would rule out damage to the nerves and the majors like MS and ALS by doing a nerve conduction study. 

I felt a weird shred of hope. I didn't want these lifelong, horrible, debilitating disease but I also didn't want to be miserable without knowing why and I really didn't want to be labeled by the one doctor I thought I could still trust. 

Well. That shred of hope was ripped into a million tiny shreds as I had the test today which came back completely normal. Hooray! I'm not dying and I don't have a degenerative neurological disease but what the (Grandma close your eyes) H-E-Double Hockey Sticks is going on then?!

I walked out of the exam room where they did the nerve conduction test that made me feel like I was an inmate being shocked for practice on death row.  

Humiliation and defeat overwhelmed my senses. Sounds were mumbled, faces were blurry... Life hadn't changed at all but I felt like I was just delivered a sentence. Not a death sentence because at least that would be over relatively quickly, this was something more cruel and deserving of only the most vindictive, repulsive sorts. A lifetime of unproved, undiagnosed, untreated pain and symptoms. 

I kind of lost it for a few hours. I withdrew into my personal turtle shell and shut everyone out. I slunk out to call my PCP to see what was next (he had briefly mentioned an MRI at my last appointment) but I wish I hadn't because for some reason the nurse didn't put me on hold... She just told my PCP that the nerve test came back normal with me just an airwave away. I heard him mumble and the nurse repeated what he said as he said it "it's probably just in your brain.... Not that you're crazy... Ha. Ha. But ya know, you and your body have been through a lot... Let's schedule a follow up." 

For the first times I didn't happily thank her for her time and toss out frilly salutations, I just hung up. 

Then I sobbed.

Like, boyfriend broke up with me a week before prom kind of sob. Like, suddenly realizing my son is going to grow up and marry a girl and I'll be useless to him and I don't even have a daughter who will still visit on holidays kind of sob. Like, Parenthood finale kind of sob. Primal devastation. 

That was about 12 hours ago. I'm doing slightly better. I'm not sure why. I spent about 3 hours having my pity party in my turtle shell and then I just kind of moved on. It's just another hard day in this life I've been given. I would be lying if I said there wasn't a moment today I was thinking death would be such a lovely departure from it all... Not that I was suicidal, I just can't stand the thought of 60 more years living like this.

I know this was just the first step of this whole new diagnostic process but I'm scared the my PCP is going to give up on me or just go with the easy out and pin the giant "W" on my lapel... Whack Job. 

Unfortunately this is such a common problem in the IC/ chronic pain community. The doctors are stumped so they stick us in a box of whiners, attention/ drug seekers, worry warts, hypochondriacs, low pain tolerant wussies, and apparently geniuses who can create physical symptoms with our minds.... Then they just move us along with a condescending pat on the head and reminder to drink lots of water, not dwell on the pain (that they put in air quotes in their mind), and to be active! 

By the way... Not that it's related to this blog... Well I'm not sure what would be related to this Christmas light cluster of a blog but I thought I would mention... I know I've told you in past blogs about my aversion to hospitals, especially ER's so I think I am fighting another UTI on my own as I wait for fever and vomiting so that I'll know for sure that it's full blow nephritis or that it's gone septic so they will take me seriously. Maybe that makes me stubborn or stupid but I'd rather feel that than how they make me feel when I show up with "colonized bacteria in my urine and a high sensitivity to pain"... As far as the muscle symptoms and falling, I don't know. 

So. 

I'll just keeping doing what I've done for 16 years and take it day by day. 

Ugh. Sorry for the lengthy, dreary post. I live in the Seattle suburbs and it's February... Surely I'm allowed one blog to match the weather. 

To end on a lighter note... A funny Titus (my 4 year old son) story... He was eating a sucker and I asked for a lick... He looked at me kind of weird then shrugged his little shoulders and stuck his tongue out as he started to lick my arm... I was laughing so hard I could barely tell him that I meant I wanted a lick of his sucker not for him to lick me! He's such a sweet, silly boy... He makes the grind of each day so much brighter with little moments like that! 

Worcestershire Sauce.

Over the years of being bed bound I have racked up hours and hours of Food Network watching so any time I'm up to making the long trek downstairs I can't help but cook something! I've come to love cooking and experimenting with recipes until they kind of become my own.

One such recipe is my teriyaki sauce. People often ask me for the recipe and I basically list the ingredients with the quantity simply listed as "to taste"... i.e. Soy Sauce- To Taste. I don't use pedestrian implements such as measuring devices.

One day I was whipping up my sauce, just going through the familiar motions but when I tasted my sauce to decide what it needed I was appalled! It was disgusting! I added CUPS of brown sugar and water to try to balance the incredibly inedible saltiness. I wasted all sorts of things as I tweaked my sauce but I just got further and further away from my familiar, delicious result.

Finally I noticed the bottle of soy sauce was still in the fridge... I was using Worcestershire sauce. A dash here and there is great but half a bottled mixed with various Asian ingredients and copious amounts of brown sugar... Real bad.

I bet you're wondering what in the world this little glimpse into my life has to do with anything... Bear with me.

I spent so much thought and time trying to fix the issues of the sauce that I didn't even consider the big picture. I thought it was too salty so I added sweet, I thought it was too pungent so I added flavorless water. I never once considered there was an actual problem that was causing it all.

This is what my doctors and I have been doing with my rattletrap of a body. We focus on all these weird, isolated incidents and symptoms but we have never looked at my body as a whole to see if maybe there is a a greater malfunction or problem that is causing everything!

What a bunch of dodo's.

Let's just talk about these symptoms... Going as far back as 12, I had severe chronic lower abdominal pain and urinary symptoms. Since then things have developed like constant nausea, severe fatigue, restlessness, extreme sensitivity to any pressure, blurred vision, muscle cramping, muscle weakness, falling, passing out, numbness/ tingling, of course continued pain, and on and on....

We've always had something to blame it all on... Medication side effects, recovery from surgery, complications, etc... But now here I am, off of my meds, not currently in any medical crisis and the symptoms continue. These aren't just symptoms that should be ignored or downplayed. I should not be falling or having regular uncontrollable muscle spasms.

So. By George. Maybe we should look into the WHOLE picture that is Deni's whackadoodle body.

Looking at the symptoms my doctor thinks it may be neurological so we are starting there. I am having a "nerve conduction test" done next week which sounds like a secret, truth producing torture where they put little needles into my nerves then send electric currents through them to see if and how well the jolt travels through my nerves, basically testing for nerve damage. Sounds like fun.

There is also the autoimmune path that we might explore depending on results from that torture and other neurological testing they might do. I know that IC is a relatively young disease and the consideration of it being an autoimmune disease is a pretty new theory but if that's the case it would make sense that I would have other diseases under the autoimmune umbrella.

It's hard being a frontier of this disease but I am thankful for any forward motion that is happening... I wish more doctors would stop looking at each symptoms and look at us as people, as patients, as a whole. I also wish that we didn't have to be afraid of being judged or categorized as paranoid or attention/ drug seeker every time we bring up a new symptom because maybe if a doctor would trust us and listen to us we would start these processes and find answers easier and faster!

I'll keep you updated but learn from my mistakes... Mention ALL of your symptoms to your doctors, don't just write them off because it's easier. Your body makes symptoms to alert you that something is wrong, like sending a distress flare from a life raft in the middle of the ocean... Don't ignore the caution flares because there are distracting fireworks nearby. (I really wanted to end it on that and just have people read that sentence over a few times then shake their head and blame it on my quirkiness but I have to acknowledge that was a stretch even though I'm not going to change it. I rebel in small ways to make myself feel in control of my life. I'm working on it.)