And our lives continue…

Good morning Dear Readers!  It’s a rainy cold Sunday morning, and it’s exactly my favorite kind!!  I was terrified of storms and rain as a child, but as an adult, nothing makes me happier than waking to hear the rain, seeing it fall outside my window, or listening to Mother Nature’s call when the thunder booms across the world… That thunder is amazing, truly… It rumbles, it rolls, it almost demands your attention, and then just as quickly it continues it’s journey into the distance… Nothing stops it… It’s going to do and go where it wants… It’s YOUR job to acknowledge it, feel it, and allow it to roll through you… I love thunder storms because it reminds me how much power Mother Nature has, and truly how little WE have as humans…

Many things have power over us… We may think we’re the biggest and baddest things on earth, but in truth we’re but a small part of this wonderful blue marble we live on… Oh we can do some damage to her… We can kill, maim, torture, stem the tide of natural processes and selection… At least for a little while… However, we are nothing but an hour to the timeline of this Earth… She can shrug her shoulders at any time, and we’ll become nothing but a memory for her… I often wonder why she doesn’t do that… Why does she not just get tired of these annoying fleas that exist on her surface, shrug her shoulders and let her surface become peaceful once more… The same answer comes back to me every time…

She is a mother… She is OUR mother… She nurtures us, nourishes us, protects us, calms us and teaches us what we need to know… Just as most Mothers will love their children no matter how badly they act, no matter how they try to ignore their mothers, or even pretend they’re dead, Mothers will continue to love their children…  I know I do mine… They try to pretend I don’t exist, tell others that I don’t support them (when often times I’ve been the only one that did), and even tell people that I’ve died… That’s their choice.. They are free to say or do whatever they want…  It doesn’t stop my love for them, it doesn’t stop my joy at seeing them happy, my sadness when the world is cruel to them, or my desire to see or hear from them at least once a decade…  As most children have done at one time or another, my kids think that their Mother was mean to them, or didn’t give them what they wanted… But just like our Earth, I look at them and think “They’re on their own, they have jobs and food, they’re living their own lives, they both have graduated from schools, they’ve not produced any unwanted children, and they’re not in jail… If that is ‘being mean’, then I’ll take the blame for it…”

I’m sure our Mother Earth looks at us the same way… We think that the “Powers that Be” have been neglectful, or mean to us… Yet we live… We eat… We smile at something during the day… We have everything we need at our feet… She has provided all of that for us, and more… And we need to respect that just a little more…

This wasn’t where I wanted today’s blog to go, but like so many things in our lives, I let the water of thought travel where it may, so it’s not my job to deter it… So on this rainy and cold Sunday, I offer you a hearty Hello, and hope that you’ll take the time to enjoy the peace that our Earth has provided us today… And if it’s sunny where you are right now, then enjoy the warmth that she’s given you, and share it with someone else… Enjoy your Earth folks, because just Mothers, she’s the only one we have…

Another plan destroyed?! What’s up with that?

Evening Gentle Readers!  Today’s post is going to talk about what happens when your body decides something that is directly contrary to what your mind had planned…

I had plans today… First time in weeks I had some plans for something OTHER than sleep, rest, and work… I’d even posted it on Facebook that I had plans!  I didn’t sleep well last night, BUT I did what I needed to this a.m. and started getting ready to leave… Meanwhile, my body is sending me not-so-subtle signals… I was trying desperately to ignore them…  Maybe if I do this, it’ll settle things down… Maybe if I do that, it’ll turn this around… *Sigh*  All to no avail…

What went wrong?  Easy… I let down my guard… Because this last flare dealt with C-diff and NOT just the UC, it’s taking longer for my system to become accustomed to my “regular” foods… I’m also stepping down my prednisone which has been sending me into tail-spins all week… I’m great at the higher levels of pred, and the bottom levels I’m good at as well… But the 30 mg level kicks my tail EVERY time… And this week was no exception… So this morning I stayed at the 30 (will go to 20 tomorrow) and tried what I could to stem the tide of what was going on… All, again, to no avail… I finally texted a friend that I was supposed to meet and told him that I couldn’t make it… I was so disappointed because it was the first thing I’d been looking forward to in weeks!!

I still needed to run into town so I prepared myself as best I could and hit the road… I ran by work to pick up papers that I can work on from home, SHOULD I need to stay home Monday… Ran by Whole Foods (to restock the kefir), then Food Lion and then home… And for those who are wondering, yup, I hit the loo in…every…location… *Sigh*  Frustration abounds… Sooooo what do I do about it… You take it for what it is, a small step back, and you roll with it…

For instance, another friend of mine texted me to say that he’d run into my first friend and had heard that I hadn’t been able to make it out… I told him that I’d needed to listen to my body unfortunately… He responded back with “On one hand I’m glad you’re listening to your body, but on the other hand sorry it’s being so mouthy lately”   I responded back with “Actually it’s being rather anal! LOL”   He told me I was bad; which he’s known for about a decade now… *grin*  I told him that you HAVE to take this with humor…  Otherwise the disease wins… And it’s true!  You have to find the ways to make this whole experience palatable for you…  JUST for you…

So while my frustration got to me this a.m. because my body didn’t want to cooperate, I had to turn that around to something humorous in order to find the positive path again… So this afternoon, I’ve been very careful about what I’m eating, I will have my kefir shake before bed and I’ll start over again tomorrow… I’ve missed out on a yearly event that I was truly looking forward to, BUT it’ll come around again next year… Tomorrow’s another day, another opportunity to try again… And isn’t that what “tomorrow” is all about?  Another chance?

Let me stop here for a minute…

In reading back through my first few blogs, I have covered a great deal about what was going on physically with my body in the beginning of this wonderful crazy ride that I’m on… But there’s another side that needs to be discussed… So today, I’m going to step back for a minute and talk about the emotional and mental side of learning about UC…

Now, for being a big girl, I’m amazingly healthy… Well I was… *grin* I tried to do my annual physicals, GYN appointments (AKA BoobFests and StirrupFests), dental, and eyes to at least make an attempt to stay healthy… My blood work was always very good… Cholesterol averaged about 160, and all of the other blood tests ran right down the middle where Doctors want them to be… I used to tell my Doctors that physically I was very boring… They liked that… “I” liked that… I’ve never broken a bone, never had to have surgery, never had anything other than a cold… Boring… (Who knew that one day “boring” would be a word I missed!)  *smile*

So when my body began this crazy rebel thing that it’s doing, I didn’t think too much of it… At least not during the first couple of weeks anyway…  I just figured that my odds had come into play and I was due for some kind of physical issue… But I always figured I’d come through it, and go back to my “boring” life… After the 3rd week, I began to get a little nervous… At the one month point, I’m really beginning to think some scary thoughts… Cancer?  TB?  Leukemia?  That’s why when the first ER Doc ventured a guess on diverticulitis, I jumped on it… I read up on WebMD what this was, what the treatments were and realized I could handle it… Whew!  But after 5 weeks… Then 6… Nothing changed… Well, correct that… It was getting worse…

Now, living alone doesn’t help things during the initial stages of UC… And of course, who would know that?  It’s not like you can look in your crystal ball and say “Hey, I’m getting ready to be diagnosed with UC and I need a live in partner because boy is THIS going to be a bumpy ride!”  As the pain came on, as the blood came on (and as hard as I tried to ignore that blood, it was always there), and as the body began to deteriorate, the fear settled in like an unwelcome relative… My co-workers and friends knew that SOMETHING was wrong… But I didn’t know what it was, so how were they supposed to?  And I kept so much of what I was going through quiet because to put it into words was to make it real… I kept hoping that each day I would wake up and it would be all better… Remember that as a child?  You just knew that once you had Mom’s soup, or took that nap, or had Mommy kiss it, it would “all better”… Except that “all better” never came… It just kept getting worse… And my fears took on a life of their own…

Anger… Fear… Despondency… Confusion… Terror… And underneath it all, a willingness to give or sacrifice whatever you had to just…make…it…stop… At one of my lowest points, I remember sitting in my office chair, resting my head on the side of my bed, crying and begging my Deity to just “take me home… Please…Take me home… I can’t take this anymore…Please take me home….”   Of course, my Deity didn’t listen… Maybe because like my best friend, They know more than I do… As They should…. But it didn’t make my prayer any less powerful or wanted… I just wanted it to stop… Take whatever you want, I’ll pay whatever you want, just make it stop… Please…

As the pain, blood and mucus became worse, the idea that I had learned to stuff a towel into my mouth to muffle the screams didn’t seem odd at all… I can remember intestinal spasms that were so strong, I was absolutely sure that if I didn’t clench everything I had, I would find that my intestine had exited my body through my bottom… That’s what it felt like… My body was doing everything it could to relieve itself of that part of my anatomy, and I felt like it was my one goal in life to keep it IN my body… It sounds a little strange, but when you’re in the throes of that spasm, it makes perfect and horrifying sense… Clench for all you’re worth, or you won’t have a worth anymore… Then, in one horrifying moment you make a mental decision to let it… You think to yourself, if I let my body do what it FEELS like it wants to do, it’ll be all over… My body will rid itself of that piece of anatomy that it can’t live without, and they’ll find me in a few days and it’ll be all over… Someone will take care of my cats, someone will sell the house and pay the bills off, the kids can fight over who gets my truck and motorcycle and it’ll be done… The pain, the blood, the dying, it’ll be over… For one…brief…terrifying…moment, you consider this option…

Thankfully your body ISN’T ready to give up… And your mind follows suit… Thank goodness for that “I want to live” instinct… It really does exist, Dear Reader… And when you finally move past that one single moment, the mind finally does what the mind is supposed to do… Decide to ask for help, and make the call… Through everything that I’ve been through in my life: a terrible 21 year marriage, unhealthy relationships across the board, abandonment issues with everyone I knew in my life, that 2 month period of the summer of 2012 was truly the lowest point in my life… This condition affects your mind and your emotions just as much as it screws with your body…

The thing that scares me now, is that if my best friend is reading this, I never shared this lowest of moment with her… I scare her enough as it is with my life, my motorcycle, and gosh knows what else… *smile*  To share this with her, at the time it was happening would have made me feel even worse, if that was possible… Maybe it would have been better had I had a partner living with me to share this experience and keep me from that lowest of mental places… I have no way of knowing that… But when you’re dealing with the “great unknown” and losing your body weight at an alarming rate, along with every bit of fluid in your body, your mind takes you where it wants to go… The emotions take a vacation… And you literally live from one minute…to the next…to the next… It’s all you have…

The amazing moment, and this is where I’ll pick it up tomorrow, is the “diagnosis”… In all my years, I never dreamed that having a “diagnosis” would be one of the most wonderful sounds I’d heard… To finally have that “thing” to grab on to, like a buoy in the water… Even though it was something I’d never heard of, knew nothing about it, it didn’t matter… It had a name!  It had a sound!  AND there was something I could do about it… Did that make it “all better”?  Of course not… But when you’re out in the ocean of fear and terror, even a leaky boat is better than swimming on your own… Until tomorrow, Reader, in the words of Dory, “just keep swimming, just keep swimming!”

How did the Ulcerative Colitis start?

In the effort to keep you reading, I should warn you, this particular item will be a little bit long… But I feel it’s important for you to understand how the symptoms got started, and the path they took…  Got something to drink?  Ready?  Here we go…

This crazy path of Ulcerative Colitis (UC) started for me over 2 years ago… It’s uncommon for someone over the age of 40 to suddenly appear with UC, but then I’m not a common person… Two years ago, in June, I was suddenly afflicted with what I thought to be food poisoning… For two weeks, I couldn’t keep anything in my gut… The diarrhea was fast and came with no warning… (This is where I first learned to keep Stanley Steamer on speed dial!)  In trying to deal with this at home, I began looking at food allergies as the culprit… Through the process of elimination, I found that anytime I ate anything with wheat, the symptoms back back with great glee…(Oh and by the way, thank the Internet Gods for WebMD!!!)

My Primary Care at the time, diagnosed me with a bladder infection… Ok, think about that for a minute… Yea, it didn’t make sense to me either… But she was a *say it with reverence* DOCTOR!  So she must be right, right?  Right… So I took the meds she gave me and went home… I decided that I would also cut out any gluten and see what happened..  Ok, no problem… Cut out wheat, symptoms went away…  And there was great rejoicing..

Now, fast forward almost exactly another year to June 5th of 2012…  Bam, out of nowhere the symptoms came back… Fast, urgent and no warning diarrhea, and a new symptom; my body refused to eat… What do I mean?  Think about the most favorite food you have in your life… Got it?  Now, imagine that suddenly if you tried to put that in your mouth, your mouth would tell you that you had just put a piece of shoe leather in your mouth… Your system would refuse to allow you to swallow it… That’s what it’s like… My body was pushing every bit of nutrition and water out of me faster than I could put it in… But all the while, my body was refusing to allow me to put any food in… I would go for 3 to 4 days without eating anything, and with the barest amount of water being allowed… This went on for about 2 weeks before I hit the local ER the first time… The ER Doc diagnosed me with diverticulitis… Being the modern woman that I am, I immediately came home and studied everything I could find about this condition… Ok, it’s not lethal and I can deal with it… After all, I am woman, hear me roar!

The symptoms seemed to abate for a few days, but at the end of June they came back once again, and this time brought a friend… Pain… Lots of it… The diarrhea, or “episodes” as we call them, were coming faster too…  By July 4th, for 72 hours, the episodes came every 10 to 15 minutes, would last for about 5 minutes apiece, and were accompanied by such pain, that my labor pains of 20 years earlier felt like a walk in the park… What caused that pain?  Well, in order to explain that, I have to explain what I found out later is the root cause of the entire condition…

If you break down the words Ulcerative Colitis, you see the word “ulcer” and of course “colitis”… In layman’s terms, this means that your colon has ulcers in it… The way my Gastroenterologist eventually explained it to me is that for some reason your colon suddenly decides that everything you eat and drink is foreign… EVERYTHING… In your colon’s attempt to rid itself of what it believes is attacking your body, it creates so much acid (for the attack) that the acid creates hundreds if not thousands of ulcers all up and own your entire colon… At it’s worst point, the entire long intestine contracts at the same time, in the vain attempt to rid itself of all of that “foreign” matter… That’s the pain… It encompasses your entire lower torso, which also brings the lower back muscles into play… I have a towel that I keep near the throne, to put in my mouth to muffle the screams… (Thank goodness I live alone… I can’t imagine how it must be for someone to hear someone else go through that kind of pain knowing there’s nothing they can do…)

So there’s the explanation of the pain… But, lest they feel left out, let’s not forget the final pieces… Blood and mucous… So, let’s go back to around July 4th of 2012… For 72 hours, I didn’t eat, I didn’t sleep, I didn’t drink, I’m not even sure I was conscious… I lived in my loo… When I could get up off the commode, I would simply make my way to the floor and lay there… I’m not accustomed to asking for help… But after 72 hours of this, I felt I had no choice… I begged a friend to drive the 40 miles to come and get me, and take me to the ER… I was terrified… I loathed hospitals, didn’t have the money to pay for whatever they were going to do to me… But I knew that physically I was in trouble… Big trouble…

After 2 hours there, and 2 IV bags, they sent me home… At this point, I contacted my new Primary Care doctor and that started a whole new hell… But that, dear reader, I’ll leave for tomorrow… For now, enjoy your ability to eat and drink… Believe me when I say, I have a whole new respect for being able to ingest things… *Smile*

Introducing Ulcerative Colitis and StormCat to you

This is going to start off a little rough, as I’ve never done a blog before… But let’s walk together for awhile and see where the path leads us… (There are plenty of loos and water stops along the way, come on)

My name is StormCat and I have Ulcerative Colitis (UC)… What is UC?  Let me give you the clinical explanation: a serious chronic inflammatory disease of the large intestine and rectum characterized by recurrent episodes of abdominal pain and fever and chills and profuse diarrhea

Sounds simple, doesn’t it?  But if you’re here through a web search on this condition, then chances are you 1) you have it, 2) you know someone who has it, or 3) you’re a glutton for punishment…  *smile*  Either way, you know that this condition is SO much more…

But who am “I”?  Well, I’m 46 years old, single (gratefully), and am owned by 3 Cats… I work full time, ride a motorcycle, am a member of Toastmasters International and in general am one eclectic lady… I’m also a member of the very dubious group known as sufferers of UC…

I was diagnosed in August of 2012, and it’s been one helluva ride since then… I’m starting this blog in the hopes that I can help others not have to traverse the same walkways I’ve had to… I can’t begin to tell you how much I’ve learned, how I much I wish I’d known along the way, and how much I’m still learning every day… I hope to make this easier for someone else…

If you’re reading this, please hang in there with me… I’ve read that you shouldn’t post too much otherwise readers get bored… *chirp chirp*  So I’m going to save the story about my path to a my UC diagnosis until tomorrow… Join me, sweet Reader, and let’s watch this drunken weaving path take shape!  *smile*