Here We Go......

I'm working on my second half gallon of GaviLyte at this writing. And, not even remotely trying to jinx myself, it's actually all going okay.  I'm getting it down (honey end the end of each glass is helping with the gagging) and I haven't had any of the telltale cramping that used to always accompany the evacuation.  My boyfriend keeps saying "I told you everything would be fine!"  but I guess I really didn't believe it.  My fear of a repeat of previous experiences kept me from doing this for the last four years. Now, I'm not saying it's amazingly great and I'm ready to do it all the time or anything...that would be a big NO. But, I'm getting through it. I even managed to cook my son's dinner in between runs.

One thing I can't figure out is why on earth they can't find something better to use to get one cleaned out sufficiently. We can put a man on the moon, but we can't find a way to make this stuff taste better? Hand it over to Coca-Cola I say, see if they can come up with something! Oh, wait...bad idea. They had that whole "New Coke" thing which was almost as bad.  Scratch that.

My procedure is set for tomorrow at 11am.  The anesthesiologist will be there, although my doctor is going to try and put me just under enough herself first, but with him as a backup. I haven't been able to tolerate adventures up that direction without being out for years. I told her this, but she's still gonna try. I guess it's safer for me if they can do that, but I don't want to feel anything, nada, nyet.  I'm way too sensitive from too many years of illness.

Well, back to the next glass. Wish me luck tomorrow!  More to come.

GaviLyte

If you don't know this word, then you probably haven't had a colonoscopy.  I'm in the midst of preparing for mine now. The liquid diet starts tomorrow, so I just finished making lots of varieties of jello jigglers and bought all the other exciting things that will fill my day before I start drinking the GaviLyte. GaviLyte will, if I manage to get it all down, clean me out entirely. It's usually nasty to drink (though this one came with a lemon flavor packet which I'm not sure is going to help) and there's an entire gallon of it. I don't usually drink a gallon of anything in a day. 

When I was first having colonoscopies and the myriad of other tests before diagnosis, there was something called GoLightly. That one really made me laugh because it was the exact OPPOSITE of what you do.  After a while I switched to the sodium pills which I greatly preferred, but my doctor told me they have been recalled. Apparently if you don't drink enough water with them you can give yourself a heart attack, or something like that. So, well, no more sodium pills for me.

So here I am, back to the gallon jug of doom.  I bought bottled water in the hopes of making it taste slightly better. I didn't count however on the cold water causing the mixture to bunch up, so I'm writing this while I'm waiting for it to get closer to room temperature to dissolve so I can put it back in the fridge to get as cold as possible. It helps to get it down when it's cold. Or that's the theory, anyway.

Tomorrow, when I awake, it's liquids, work, liquids, bathroom. That's my exciting plan for the day. Wednesday morning I'll drive to my boyfriend's house, and he'll take me to Kaiser.  After I'll stay at his house where he promises to dote on me so I can recover.  That's a great thing to look forward to, waking up with him there and knowing I don't have to do a single thing until I feel better.

It's been four years since my last colonoscopy. That's on purpose, because I'm supposed to have them every year but I hate them. I LOATHE THEM. Yep, that's a good word.  I can't handle the scope so it's always general anesthesia for me which frankly I prefer. Blink, and its over.  I seem to have quite a bit of trouble in recovery though due to the numerous biopsies they have done every time I've had an exam.  I feel like crap anywhere from a few days to a few weeks after.  I'm hoping this time maybe it won't be that bad. I'm also hoping all goes well with the anesthesia since after losing my elderly cat while under I now have a fear of it...not to mention the whole Michael Jackson thing.  I'm trying to just keep positive thoughts and the panic that's rising at bay.

So, here's to some yum yummy stuff and maybe another four years until my next one......

Paaiiinnnn.......

I'm supposed to leave for Tahoe for a weekend getaway in less than an hour.  I spent most of last night in crippling pain, pain that was so severe at times I was crying, or where it took me past the place I could deal and put me into what I can only describe as catatonic shock.

Pain sucks. Pain sucks HARD.  My friends and family really wish I would take something for it. Unfortunately, having UC means that pain meds just make it that much worse since as many of you might know, they plug you up.  With UC, you don't want anything that screws with what is already screwed up. I've also found frankly they just don't work well.  They make me not care about anything, but I can still feel every little pain.  I thought about it last night though, as I lay there trying to just get a grip. At the time I would have given almost anything for it just to stop.  I had a momentary delusion of even just getting some freakin' Tylenol or the Flexiril I have from a recent car accident.  I couldn't get out of bed though. And my sensitive doggies all laid on top of me trying to heal me...sweet, but didn't feel great.

This morning I feel better in the teeniest fashion. I'm upright, woo hoo!  I'm about to make a 5 hour drive, but then I can relax with dear friends in a place that I love.  Hopefully, the pain will take a vacation too.

Summer Summer, Had Me a Blast

Well, I sure haven't kept up on this blog like I promised in my new year's resolution.  I'm okay with that, but I'm sorry for those whom I regularly correspond for dropping off the map.

The last few months have been a whirlwind.  My son leapt from being a Freshman to a Sophomore, I became the Drama Booster President at his school, the friend of my son whom I was parenting was given over to state custody after his mom's custody was removed, I had turnover in my staff at work which sucked up a lot of time but resolved nicely with some great new hires, I organized my 25th high school reunion, I enrolled my son in driver's training, and I met an amazing man who has brought a new source of joy and inspiration to my life.  There's more but that's the gist.  Life, well, I love it. And as you might imagine, all of this also caused a lot of stress over the last few months. Stress = flare ups. I've not been terrible, but not great either.  Or not as great as I'd like to be. Humbled and brought to my knees once again by the life that is mine with these illnesses.

I like summer, the way it makes me feel free, free and carefree - just like when I was a kid.  I work all summer, and really it's no different than any time of the year. Except that I get this feeling inside when I think about it, like I want to do a little skip and jump and say "hurray!"  Where I live, it's not hot in the summer since I live on the coast. We have pretty moderate temperatures which suits me just fine since heat sucks for me and makes my ulcerative colitis in particular flare up significantly. Living near the beach, and surfing as I do, summer brings with it feelings of lounging on the sand, relaxing to the sound of the waves, feeling grounded and at peace. I also love fall which is almost upon us; the smell in the air, the beginning of the holiday season, the feeling of comfort and love I feel toward everything in those months.

As I think of all the seasons, the feelings they inspire, I picture myself healthy within them. There was a time when I couldn't do that. I couldn't picture myself a day ahead, couldn't see myself with my future due to my illnesses. One day at a time. It's nice to finally see myself a little farther ahead than a day, or two...or 150.  I think depression is a regular coproduct of chronic illness and chronic pain.  I was just talking with a friend of mine about that recently.   I consider myself relatively upbeat, and I think most of my friends would agree with that.  However, there are times when I sink, and I feel it. And in those times when I feel sad - usually following the reality of a flare up - I also feel insecure. I don't feel whole. I don't feel I have anything to give, and my greatest joy comes from giving.  I don't feel worthy. I don't like myself in these times, I don't like the sadness I feel or the ache I have to be held and comforted. I try and avoid talking to anyone until I snap out of it because invariably I'll say something ridiculous.  I also don't like the fear I experience that maybe, just maybe, I'll be like my dead sister and my brother who have bipolar disorder.  I say to myself, "please don't let it be that. It's just the illnesses making me sad. Well, maybe I should be checked. No, no please don't let it be that."

Mental health disorders are tough, and I've watched it with a front row seat. My sister is dead because of hers - she finally was successful in committing suicide after years of being sick.  My brother self-medicates through drug and alcohol abuse.  I feel for those who struggle with these oft misunderstood diseases all the time.  I take heart in my son who wants to work on schizophrenia and body displacement disorder when he gets older (and of course if his acting career stalls, that comes first.)  I think about the discrimination I see every day in my work toward those with psych disabilities, as well as coworkers with the patience of Job helping their severely mentally ill family members.  So many heroes among us.

Today I want to continue to feel the freedom of summer and forget the heaviness and toll of chronic illness. I want for everyone to remember how that feels for just a moment, back to childhoold, even the smallest moment where you felt loved, free, and without a care in the world.  The only way to feel it again is to remember.

Friends, Advice, and Chronic Illness

I am very blessed to have so many amazing and supportive friends in my life. I also realize that my illness can often be a source of stress and concern for them. Most of my friends are healthy - well, healthy compared to my situation. Of course, as we are all getting older some of them now turn to me as their aches and pains become chronic and ask me for advice. I'm so glad to be able to give something back from this often difficult journey.

Advice. That's the key word. We all have both received it and given it in our lives. It's one of the ways that we as lost humans connect. I guess what I'm thinking about really is more than that. I'm thinking about our oft nemesis, unsolicited advice (UA). My friends are famous for this, and I am quite sure it is always done with the best of intentions. I do appreciate it, as my friends have good hearts and want to see me well. Unfortunately, what I find happens is that with every piece of UA I have to explain again about my illness, and again, and again. Sometimes, really, I just don't want to do that. I like my rabbit hole and would like to stay there periodically. And, there is a serious lack of understanding that there is no cure.  NO CURE. Thus the word CHRONIC.  I'm okay with that. I don't think, however, that my friends are okay with that. And you know what is ridiculous really?  When I get these pieces of UA I actually feel like my friends believe I can't manage it myself. Which, of course, I realize logically is ridiculous and that isn't where they're coming from...but, it's how I feel. With every UA, I feel a little more defensive about explaining all the things I've done over this nearly two decade-long journey being ill. The many steps, the missteps, the tears, the pain, then the amazing breakthroughs....and of course, the continuing flare ups. And being defensive won't help me to really listen to that one thing that someone might say someday that I actually need to hear and will help me.  Maybe this is how any UA is. I remember as a young parent there was all kinds of UA at every turn. Of course, I didn't really know anything so I just said thanks and nodded my head. Okay, sometimes I also seethed a little inside. Just a little...and imagined snappy comebacks that would put them in their place and show them my amazing ability to use my own Magic 8 Ball to answer all the parenting questions of the world.  Muah ha ha....

So, I guess with a chronic illness that UA becomes chronic as well. I have learned through this process, however, that unless I'm at work where I'm paid to give people advice, I try to be really sensitive to other people when offering my own. The importance of connecting with each other is sharing experience, and that sharing means that we care enough to want to help one another. And, that is a beautiful thing.

Pain and Chronic Illness

Tonight I'm not feeling well.  My lower back hurts, and my abdomen feels like someone is grabbing it and twisting. I walk doubled over into the bathroom, sitting with my Word Seek book trying to ignore the pain and hoping it passes soon. I have a routine for these times - grab my water, my chapstick, a blanket, slippers, sometimes a pillow, and hunker down. The Word Seek books I keep next to the toilet to keep my mind off the pain. It helps. I don't know why, but it does. I find this routine soothing somehow, because so far it has got me through every time alive, so now I've developed a superstition about it. Like sports players not washing their jerseys...but I think I smell better.

This current flare is the result of not taking my full meds last weekend. I only managed two meals a day so I was down a dose for three days in a row. Not good. My interstitial cystitis acted up first - starting with the feeling like I have to pee every few minutes.  Annoying, and painful. Then the costochondritis flared up. This came on about 4am on Tuesday with a pain under my left armpit. It's sharp like a knife being plunged into my ribs, then fades, then I relax, then it comes back again. This lasted about 24 hours. Now, the ulcerative colitis. And, all of this causes fatigue. I want to just curl up in my bed, heated blanket on, soft pillows surrounding me, and disappear for a while.  I want to lock the world out, my responsibilities out, and just sleep until I feel better. I don't have that luxury being a single parent, but I can pretend I do in my mind which helps a little bit.

Pain is something all of us have in our lives in one form or another. I have a certain amount of chronic pain that is constantly with me, which I hardly think of as pain anymore. Then I have this kind of pain - the pain of the flare up.  I wonder how others out there deal with their pain?  What works for you?

I often get asked what others can do for me. Most of the time, I really just want to be left alone. I need to go into my mind to deal with it.  Maybe bring me my water, tell me you're there if I need you, and then leave me until I get through it.  It's not callous, and there's nothing really you can help with. Just knowing you care is what I need, that's all.

Well, back to the bathroom.....

La da da da life goes on: Chronic Illness and Perspective

March. So far this month has brought some momentous changes in the world - namely, the earthquake, tsunami, and nuclear emergency in Japan.  The little things we deal with day to day pale in comparison to this tragedy. And, I'm sure somewhere over there are people dealing with chronic and terminal illnesses who just had their entire world turned upside down on top of it.  It's all perspective. What most of the rest of us are dealing with is teensy by comparison.

Perspective. Recently a friend of my son's came to live with us. He was kicked out of his house so I opened my home to him. It's someone my son has known for a number of years. His mom, who is also a single parent like me, was diagnosed last year with breast cancer and just finished her treatment; she has some kind of liver involvement now they are researching, and will find out in a few weeks if the treatment worked. It had spread to 7 of 9 lymph nodes. They also have have a very difficult home and financial situation outside of dealing with a significant health situation. And, whether it's something wrong with her brain from the cancer or the treatment, she is treating him horribly. I don't mean this in an even remotely light way. I feel sick and immensely sad about the things she has said and done to him. I try to tell him that it's probably because she's sick that this is happening. It still doesn't make it right nor excuse the behavior, but maybe it gives a reason for it. It's hard enough as adults for us to deal with someone we love treating us horribly, let alone a teenager who has yet to develop all the skills we learn as we get older in dealing with this kind of situation. Right now we are just going day to day. I don't know how long he'll be with us, but keeping him safe and stable, and giving him support, is the least I can do.

So a new journey begins for me, raising two boys, and doing everything I can to stay healthy in the meantime by managing my illness so I can be there for them. And, remaining aware that what I'm dealing with is the smallest of potatoes compared to the rest of the world.

Loving Ourselves through Illness and Disability

Yesterday was Valentine's Day. This day gives us the opportunity to tell those who we love how much they mean to us and how they have enriched our life. For those of us dealing with illness and disability, it also gives us a chance to tell OURSELVES how much we love us.  Sound crazy?  I beg to differ.

Being sick does a number on our ego. Often, we feel lacking and less of a person because we have some kind of health challenge we're dealing with.  Sometimes we get that from others, but most of the time it is born within, in the place where we are insecure of ourselves. We sometimes get angry at the illness, at whatever is causing or has caused us to feel the way we do - imperfect. That anger festers, and keeping that anger doesn't give us the opportunity to accept who we are and love who we are. And, I contend that loving who we are - embracing all of us, including our illness or disability - is the way to happiness and having a fulfilled life...and the best way to meet the disability head on, get help and support, and move forward. 

So, on Valentine's Day, remember to love yourself.  Mwah!

Working with a Chronic Illness

Well, I promised to write weekly and it's been almost two weeks. So, I'll give that New Year's Resolution another try.

What I thought I'd talk about today is employment and how to manage that with a chronic illness. In addition to the fact that I am an employee working successfully with a chronic illness, I have also been working in the disability management field (and specifically ADA coordination) for over a decade. As I mentioned in an earlier blog, I was told many years ago that I'd never work again. When I decided to say 'screw it' and try anyway, it propelled me to make a larger career decision to help others with disabilities gain employment. So, with this dual background, I have some experience to share.

First, many of you reading this are already aware that there are legal protections to assist you if you have a chronic disability in the workplace. The two biggies in this are the FMLA/CFRA (Family Medical Leave Act/California Family Rights Act), both of which provide time off for eligible employees to care for their own serious health condition. (It provides other entitlements as well, but for now we're just talking about our own disability.) This is entitled time, which means it can't be denied if you are eligible. The second biggie is the ADA - Americans with Disabilities Act, which in California is coupled with the broader protections of FEHA (Fair Employment and Housing Act). This provides for reasonable accommodations in the workplace to allow individuals with qualified disabilities equal access to perform essential functions of the position.

The most important thing I can say to you is to educate yourself about these laws, about what you're entitled to, and talk with your HR representatives at work. Make sure to have support on your side, whether a friend or union representative. Make sure you understand your rights as well as your responsibilities. Be prepared to suggest solutions and ideas. Also, be aware that finding a reasonable accommodation isn't always possible. However, armed with information, you will be in a much better place. Many companies don't have disability management specialists or ADA coordinators, and I often hear that employees in those organizations are at a great disadvantage many times in trying to get an accommodation. But it's your work life, so find out as much as you can yourself and be as prepared as possible.

A great place to check out that I highly recommend is the Job Accommodation Network (JAN). JAN helps both employees and employers with accommodation ideas for disabilities. Their website is great and something to take some time to peruse.

Another recommendation I have - which is often hard for people to hear - is understand your limitations. What I mean is understand your disability and what will work for you in employment, and be realistic. Seriously. For example, at one time I wanted to be a court reporter. I thought it was a really cool job, good money, and I had an affinity for those cool little machines with the funky keys. I signed up for classes, but upon greater thinking I realized that I can't sit in a courtroom for hours with my bowel and colon issues. This wouldn't be good for me, and I know I could not successfully perform the work. "Um, excuse me judge, I have to pee. NOW. Can you hold up these sentencing proceedings?" Yeah, right. There isn't a reasonable accommodation that would allow me to do the job the way I wanted to, so I opted another career path that I found I really love. Sometimes, looking at other options is the best thing you can do for yourself. If I had decided to continue down the stenographer path, guaranteed it would have created stressful situations for me and frankly been a bad match. That's just not worth it. Life is too short.

So, get educated, understand what you can do, and figure out how to do it.

Oops, I Did It Again: Chronic Illness Armageddon

Wow, 2011 is here and it's been months since I've written. New Year's Resolution: Write Weekly. Share More.

Looking back, 2010 was a great year for me. Many wonderful things happened that are propelling me through a mid-life crisis that I'm entirely enjoying. Of course, my health was up and down. No one ever is magically better with any kind of chronic illness. Also, long hours and stressful work, even though I absolutely love my job, didn't do me any favors in that regard. While stress didn't cause my illness, there is a direct correlation to how it affects me symptomatically and can exacerbate a flare up. So, I use yoga, exercise, reading, and other things to alleviate the stress. And all of that said, I was able to manage things relatively well with some semblance of balance in my life.

So, here we are, January 30, 2011. I went to Sunny Cove today with my boyfriend, watching the waves, the sunset, taking a walk, watching and laughing at the dogs running around on the beach. Holding each other, there is nothing that could take my mind off the beauty of the moment. Except a familiar feeling inside...that is, a familiar, sudden pain in my abdomen announcing the arrival of my sometimes silent passenger - colitis. It's been months since I've felt this kind of pain and even longer since it came on this suddenly when I wasn't at home near the loo. Apparently, colitis needed some attention and it certainly knows how to push my buttons to get it.

Fortunately as this came on stronger, we were walking to our cars. I started my Lamaze breathing, which didn't help at all during childbirth but I find works wonders when you're in the grips of abdominal cramping that is sure to result in the expelling of everything inside. I started to sweat from the pain, trying to refrain from doubling over as I walked. I got to the car, threw myself inside and said prayers that I'd make it home before...well...my version of Armageddon.

I learned a long time ago that these kinds of bouts, the fear of losing it such as this, are what kept me from having any kind of life before I was on Asacol. And I also found I'd live through it - through the pain, through the embarrassment. So, in my car, I just hoped for the best. I was 20 miles from home, which ended up being about 16 miles too long. I also found in the past that I'd rather lose it in my car and deal with it later at home than attempt to get to a public restroom. In these days where most restrooms are locked and many are single stall, I have found that the safety I feel in my car outweighs the dread I have in a public restroom - someone waiting to get in, knocking; picking a place where the restroom is out of order or they won't provide a key without a purchase; looking like a lunatic (or worse a junkie), doubled over and sweating from the pain and asking for the key, to be met only with suspicious eyes. No thanks.

As I drove, I wondered what it could have been that set me off - exercise has in the past exacerbated it, and I thought about working out the night before and working in the yard that day. I also thought about the food I ate - the fresh eggs this morning, the avocado, the new water filter? All suspects as they were 'new' to my routine. Too many choices, maybe I can't narrow this one down. But it gives me something to think about besides the pain that is intensifying. And in the midst of thinking about it, Britney Spears pops in my head. "Oops, I did it again." Seriously. I don't listen to Britney Spears, but this song plays in my mind on just these kinds of occasions.

I used to keep extra clothes in my car for times such as this. I also used to toy with wearing Depends when I was sick and this was a regular occurrence. Neither of these were the case today. So, once home I clean myself up, throw the clothes in the washer, and go on as if nothing happened.

Except...something did. The emotional toll of being sick hits me again. When I'm well, I have a brilliant sense of denial. Times like these humble me again to who I am, what this life has dealt me, and how it impacts those around me. The good news is that it reminded me to get back to writing this blog. So, here I am, talking again in the new year about the journey, for all of you and for me. I'm tired now, spent from the day (literally), and ready to sign off. But I promise you'll see me here at least weekly, sharing whatever is happening. The journey continues.