Come on Spring!

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Every little taste of warm weather gets me even more excited for Spring. I have so many things I’m looking forward to that it’s beyond ridiculous at this point. After everything that’s gone on in this past few months, it feels like I have a fresh start.. at pretty much everything. So I guess that’s what Spring is to me this year, a figurative new leaf, a fresh start, everything.

So this year I’m going to be doing the garden all on my own, and quite frankly I’m thrilled. In the next week or two I’m going to go buy myself an asparagus plant, hopefully I two year one if I can find it. I’ve been meaning to plant asparagus for years, but I’m too impatient to wait for it, or I talk myself out of it at the last second. When I put that plant in the ground, I’ll probably go ahead and put in my first round of radishes and lettuce. I’m not sure what else will go in the garden this year, definitely green beans and tomatoes, maybe some peppers and carrots, but beyond that I’m still debating. When my ex was still maintaining the garden, we kept planting things we really didn’t eat a whole lot (eggplant, broccoli) and I really don’t want to waste the space this year. I don’t know, I’ll figure it out soon I hope. Haha.

Moving on. So the ex came and picked up his dog the other day. A small part of me misses that stinky old hound, but the stress in my house has decreased significantly. Dealing with two dogs, one of which was a stubborn nose-driven-beagle was just too much for me with everything else that’s going on. One more dog is much more manageable for me. It has it’s perks too. I let Thumbs stay out of the crate at night now, and she’s much happier and I’m sleeping much better now too. I had always crated her with Zoe because I’d feel bad putting one dog in the crate and leaving the other out. Zoe though couldn’t be out at night or anytime we weren’t in the room since she’d have accidents in the house and rummage through the garbage can every chance she’d get. Beyond that, it’s much more convenient now to go take a walk with Thumbs. With both dogs, they’d both go every which way, and pairing that with my motor mouth child, walks were far from relaxing. Now, my dog just does her business, and Noodle and I talk while walking. We’ve made it a goal to walk at least 4 times a week. So far I’m loving it. The mild exercise paired with the lower stress in the house is really helping me keep my head in a good place.

My birthday is coming up as well. This year is the big 30, which to me feels like 40 but who’s counting. I’m not as effected by the number as I thought I would be. I mean, I’ve already hit most of the milestones my age group is going through right now, years ago. So I guess it’s not a big ole thing. Not sure about a mid-life crisis yet either, I’m pretty sure I’m mentally 80 years old as soon as I get off of work. I’m content with a book, my journal and some coffee or tea. The rowdy night out is a rarity, and has been for a while. That’s fine with me. I always thought I’d be upset about turning 30 though, and honestly, I keep forgetting about it. We’ll see. I know Noodle is more excited than I am, but beyond that I’m not sure if I’m even doing anything for my birthday. Who knows!

Work is going well, same shit, different day, and I’m still there so that’s a bonus. I’m working on writing more, but haven’t been able to really drill anything solid out. I’m still on the hunt for a group of some sort to join, but I’m not really finding anything I like yet. I did find one group the next town over that’s something along the lines of books and brews at a local pub that sounds fun, but I haven’t had a chance to check them out.

My health stuff is basically stable, my Crohns pops up here and there, and my heart hasn’t given me the finger lately. Feeling quite a bit better with my anxiety and such as well, but all of that is a work in progress I guess. Just glad to finally be feeling more normal and.. gasp.. dare I say.. happy? I guess not being told how much of a horrible person I am damn near every day helps. Whodathunk?

The kiddo is doing great! She just brought home another report card earlier this week. She’s still getting straight A’s! I’m really proud of her, and that’s honestly an understatement. She’s doing so well in school, and has really stepped it up with helping out around the house. She’s about excited for spring as I am. I think I’m going to get her a new set of roller skates as a gift for her report card, and to give her something to do outside. The kid not only beats me out in smarts, but she’s still hella more agile than I ever was. I swear, she keeps me on my toes.

That’s about it I guess. Planning a big vacation with the family later this spring, but beyond that, it’s been pretty laid back and relaxing. It’s been interesting finding peace again, and honestly, I can’t help but to say that I’m content with the turn my life has taken this past year. I’ve learned a lot, faced a lot (especially the heart issues) and came out better for it. I guess.. cheers to spring! Let’s see where life takes me now!

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Once Upon a Time..

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Once upon a time, I felt healthy. Once upon a time, I felt like I could conquer the world. Once upon a time, I felt like I could do anything.

At one time, a compliment was just that. Now, “You look good today” just makes me wince. I just want to say: “Well, I don’t feel good.” or “I guess I did a good job hiding behind my makeup.” At one time, a compliment was just nice, now I wonder if people won’t take me seriously when I say I’m not feeling well because I look “fine” or I “don’t look sick”.

In the past, I would look forward to each day. I would wake up early, stay up late. I could go all day and do whatever I wanted. In the past, I ran my own life, now I “count my spoons” and hope I can make it through the day without becoming exhausted to the point of tears. Now, I look forward to when my daughter goes to bed, so I can finally stop.

When I was healthy, I didn’t have to have blood draws on a regular basis. I went to the doctor only when the flu got me down. When I was healthy, I never had surgeries, and only stayed over night in a hospital when my daughter was born. Now I’m a regular on almost every floor and I can tell you what vein and what angle.

Now that things have changed, I’ve learned how much stronger I a.m than I was before. I can face life with a different outlook than most people I know. I know the fear of dying, I know the feeling of constant pain. I’ve faced my disease head on and while I’ll never win, I learned to keep fighting. Now that things have changed, I know that the lessons I’ve learned, help me to appreciate life all the more. I know I’m a strong role model for my daughter. I know that if I’ve made it this far, I can do anything.

Giving up, or living with…?

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When you have a chronic illness, there are many stages you go through leading to acceptance. I know when I was first diagnosed, I was almost insane with happiness because I finally had an answer. There was finally a reason for all the sickness, all the weight loss, all the pain! I took my first type of medication with glee at the thought of getting better. From there, as I cycled through “remission” and “flares”, my attitude towards Crohns Disease changed many times.

A lot of the time, I took on a headstrong approach. I knew Crohns could very well put my butt in the hospital, but I was going to do what I wanted anyway. It was a take-charge-attitude. Nothing was going to get me down.

The other end of that spectrum, is more of a… careful approach. It took me years to get into this little “phase”. I spent so much time feeling almost invincible, pushing myself farther and farther, when in reality what my body needed was rest. These last few years I developed a stricture around my terminal ileum, which led to bowel obstruction after bowel obstruction. At first it was once a year, then twice a year, then all of a sudden, I was being admitted every other month. Which of course is what led to my surgery.

In the months leading up to my surgery, I started realizing that pushing my body so hard the previous years definitely took a toll. Now I’m not saying that you shouldn’t do what you want to do in life, just because of a chronic illness. However, you have to listen to your body and rest when you need to. There were many, many a time where I went with little sleep, or didn’t take a day to myself after a big event or trip. I didn’t pay as close attention to what I was eating as I should have, and I didn’t take care of myself.

The downfall of getting so sick, and thinking about all of the ways I hadn’t taken care of myself, is that I’ve more or less become a homebody. Don’t get me wrong, I’ve always enjoyed the quiet of my home, but I’ve retreated more of the last couple of years. I’m more often than not going to avoid places without easy bathroom access (which is pretty par for the course with anyone with active IBD), and after 2 years shy of a decade, the fatigue is so overwhelming that I get anxious about going to anything resembling an all day festival. By all means, I still *want* to go to festivals, markets, concerts and such.. but it’s almost like after years of “conditioning” it’s all to easy to just say no. It’s easy to just stay at home, where I can hurt in the comfort of my own bed, use my own bathroom, and have easy access to my medications.

Someone told me recently, that I had lost that “fight” I used to have, that it seemed like I had given up. When I heard that, to be completely honest, it broke my heart. I’ve been through a lot this past decade, not even just health related. The last thing I think when I look in the mirror at the bags under my eyes, the scars on my tummy, is that I’m looking at someone who has quit. When I look at myself in the mirror, I see someone who has fought the mother of all battles. I see someone who has been through hell and back, and has still managed to stand up every morning and face the day. I don’t think I’ve given up, I think I’ve just acclimated.

Sure, I need to work at my confidence, to get myself back out there. This time however, I will be taking care of myself, taking the down time I need, taking time for myself. I do want to get back out and “live life” instead of letting life pass me by, but I will do it on my own terms. I haven’t lost the fight, that fight that was so very much directed at not losing the life that healthy people lead, damn near destroyed the life I already had. The fight that I supposedly lost, isn’t missing, it’s just been redirected into getting well.  It’s been redirected into saving myself. Now I just need to learn to shift some of it back to other aspects of my life.

By no means though, have I given up. I just learned to live how I needed to, to get by, not just keeping myself out of the hospital, but keeping myself sane. Unfortunately, it’ll take a little while to learn how to shift from this stage to something more in the middle. It’s going to take time to learn how to live fully, while protecting what health I have.

I have not given up, I’ve just learned to fight in every way imaginable.

Is it Summer yet?

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I am home from the hospital, and currently relaxing on the couch with my two mutts, little one all tucked in for the night. I missed her quite a bit, even though I was only technically in the hospital for 3 days… she on the other hand, thoroughly enjoyed her vacation from Mommy.  Usually if I have to go into the hospital she either goes with my Dad (where she is spoiled rotten) or she goes to one of her old teacher’s houses (a friend of mine who works at her daycare… who also spoils her rotten I’m convinced). When I got home I warned my friend, we’re chopped liver when she’s around, and to have fun prying her out of your house. Sure enough, she was a bit upset that her fun was over, but I got a super big hug and a kiss when she walked in the door.

Oddly enough, this little hospitalization timed itself perfectly as the munchkin’s got a bit of a head-cold and wouldn’t have been able to go to daycare anyway (spring break up here in the mid-west. So we got to spend the day lounging together and relaxing, with both of us asking each other how we’re feeling and if we the other needed anything.  Honestly, it was quite cute.  I don’t know what I’d do without my little minion, she’s one of a handful of things that keeps me moving, even when I don’t feel well or am down in the dumps.  Between her, the boyfriend, and all the pets, I get cuddles whenever I want and love, more than I can handle.

Sometimes though, it’s hard not to get down in the dumps. Especially in the winter, well, I guess now “Spring”. Lately in the mid-west, Spring has been colder than usual, so if you’re someone like me who gets the so-called “Winter Blues”, this time of year is wretched. Where we’ll get one warm day and then snow.  For instance, we already broke 70 degrees, and then it snowed about a week later. I’m definitely counting down until it starts to warm up. Hopefully my mood will improve on it’s own then.

Definitely looking forward to late Spring and Summer this year. We have a lot planned, from trips to the lake house, to farmer’s markets and such. The last few years were really busy, last summer especially with my working insane amounts of hours, both in the office and out. I feel like I missed out on a year, so I’m making sure that doesn’t happen again. The Short One has already been able to go roller skating outside and to ride her bike (she’s still doing great on it, although she still takes the occasional spill – the boyfriend taught her last summer) so pretty much anytime it’s warm enough to unzip your jacket just a tiiiiny bit, she’s asking to go outside. We can’t wait.

I know I’m probably looking at some health issues this summer, but hopefully we’ll be able to plan them out (surgery?) since Grandpa wants to take her if I do go in so they can do something fun together. To be completely honest though? I’m just looking forward to the kids all playing in the backyard and relaxing on the deck. Come on Summer! Get here already!

Resolution: Stand Up to Medical Bullies

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I am not an easy patient.  Far from it.  I insist on researching each medication doctors want to put me on, I refuse surgery if I don’t see it as needed, and I refuse to let up or give up.  I am pretty much a nightmare to hospitalize, and even worse in ERs if I’m not treated right.  I question each diagnosis, each lab report, and each cat scan finding.  Hospital nurses usually love me, mostly because I knock the pompous doctors down a notch… and involve them in the most horrendous jokes you can even fathom.  Nurses in offices?  Usually don’t like me too much, as I don’t take orders well if I don’t agree with them.

I’ve been “chronically ill” for 7 years now, it’ll be 8 in April.  6 of those years I’ve been diagnosed as having Crohns Disease.  I know my disease fairly well, I know my body even better.  I can tell you if the pain I’m having is inflammation, an abscess, or an obstruction.  I can tell you if an internal fistula is open, or if it’s healing.  I can tell you pretty much anything about my disease, I can also tell you almost everything about the medications I’m on.

However, over the past couple of years, I’ve become… mentally beaten down.  Wary.  Tired?  I’m not sure.  All of a sudden, instead of questioning everything, I started rolling over.  Instead of chewing out surgeons, I cried and sent them out of the room.  Medication I didn’t agree with?  I took it for months before I stood my ground and threw the pills out.  I’m letting others control a major portion of my life with out forcing them to listen to what I have to say about it.  Just the other day, I rolled over when a nurse pulled an ego-trip and lectured me.  I rolled over and took it… for a while.

This most recent Crohns flare, is just that.  I have a new pocket of inflammation that has been acting up on and off since May.  I was hospitalized for it then with a partial obstruction and pain… the following catscan found it.  Christmas Eve, the pain got really bad.  Christmas Day I was living in the bathroom… Christmas night I stayed up in fetal position because the pain kept me from sleeping.

I called my nurse, and got one I normally don’t deal with.  She was very nice and suggested I go to the ER for some pain relief.  I agreed as I didn’t have any pain medication at home.  I hopped into the ER, the ER doctor (one I’ve seen several times) confirmed that it wasn’t an obstruction and gave me a couple of doses of pain killers and fluids.  Wrote me a script and let me go home.  The next business day I called my nurse back, I needed to make an appointment and ask for something for nausea and pain.

My normal nurse was back.  She went through my medications and started lecturing me about going off of one of them.  I informed her if she answered messages, she would have had a say… but she kept going.  “Well maybe if you stayed on xyz, you wouldn’t be sick.”  I shut my mouth even though I just wanted to yell “I was still sick on xyz, except for then I was losing my hair, dealing with fatigue and insomnia (more than usual) and lack of appetite!”.  I kept my mouth shut.

She kept going on and on.  I cut her off to ask for something for pain.  She refused to give me anything (apparently about half of all GI offices don’t write narcotic scripts), not even drugs previously prescribed by her office.  I asked her who I should call for pain medication, and she told me to go to the ER.  “Umm, I went on Friday.  I can’t go in every day, I have to work too you know.”  She didn’t know.  She had no idea.  She didn’t even look in my chart.  I asked her again who to call, and she wouldn’t refer to me anyone.  “If the pain is that bad, go back to the ER.”  I got off the phone in tears.  All I knew is that I had a bad Crohns flare, with little medicine left and no relief in site.

I made some calls, and someone called my doctor’s fill in for me.  He knew right away that I had already been in the ER, and after small discussion wrote me 3 prescriptions…. and instructions on what to do if the pain got worse, obstruction, blah blah blah.  So to sum that up, a doctor I’ve never seen… who looked at my chart once, trusted me and respected me more than a nurse I’ve been working with for 6 years.

On Monday, my doctor comes back, and I am to call him to discuss my options.  However, I know the nurse has already filled my chart with crap about me quitting one medication.  I was dreading talking to him, I had cowed and taken two different medications this year that I didn’t agree with.  I didn’t want to be bullied into it again.

It finally dawned on me.  I was letting doctors bully me.  I had let a surgeon make me cry.  I had let a nurse make me cry.  I had taken the wonderful care from the wonderful ER doctor’s and nurses, only to be made to feel uninformed and dangerous by one nurse who hadn’t even looked at my chart.  I had agreed to take medications I had notes against in all charts across all networks.  I had stopped standing up for myself and my body.

So that’s where my New Year’s Resolution comes from.  I am going to stand up to my doctors, I am going to tell that nurse off.  I am NOT going to be talked down to because I don’t like taking 2 medications out of god knows how many.  I am NOT going to be bullied because I don’t agree with a certain course of action.  I am in charge of my body and the decisions that swirl around it.  This disease is part of MY life, for the REST OF MY LIFE.  I have to own it, be informed, and make informed decisions.

Having a Chronic Illness is not easy, it’s actually quite terrifying at times.  It’s easy to get down when you’re feeling sick, it’s easy to feel defeated.  It’s heartbreaking to look at the rest of your time on this earth thinking “so this is how it’s going to be?”  We as patients, we as people need to take control and steer our own lives, which includes or illnesses.  If your doctor doesn’t agree, there’s always another doctor, with another opinion.

In 2015, I will not be bullied.

Christmas with a Flare

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Yup, I predicted it.  My Crohns Disease is fully flaring.  What is it with the holidays and this disease kicking my ass (pun intended)!?  I had started feeling better, then on Christmas eve, I started with some severe cramping.  It had been happening on and off for weeks, so I didn’t think a whole lot about it.  I just made sure that I ate really soft foods, and took it easy.

Christmas day was really rough.  I had to have gone to the bathroom upwards of 20 times.  Anything I ate or drank went straight through me, but the pain was manageable and my parents are familiar with this mess, so I wasn’t bothered by using their bathroom.  On the way home from their house, the pain ramped up again, but I was determined to not end up in the hospital on freaking Christmas.

Got everything in the house, the kiddo in bed, and laid down for some sleep myself.  I actually managed to get some zzz’s, but at some point my daughter woke me up (she woke up at 12pm thinking it was morning).  When I got up to get her back tucked in, my bowels started moving and the pain was unbearable.  I laid in bed for a couple of hours, trying not to cry nor wake up the boyfriend when I clenched up due to the pain.  Eventually I gave up and moved to the couch.

It was horrible.  I had been so determined to have a normal set of holidays, and it all spiraled out of control.  I sent the boyfriend to work, but seeing as how the pain was bad enough that I couldn’t walk, I called off of my work.  I tried to call my GI doctor’s office for the better part of 4 hours, turns out my GI wasn’t in, neither was my normal nurse.  I ended up playing phone tag with her until the evening, where she finally told me to go in for pain management.

So the day after Christmas, I ended up going into the ER and got some fluids (I hadn’t been able to drink since the day before) and some IV pain medication.  They let me sleep for a little while, and gave me a small script for pain meds for at home.

To be completely honest, I’m pretty scared and emotional about this whole ordeal.  Sure, I’ve had obstructions over the years, and that pesky fistula, but this level of pain and diarrhea?  Not since I first got sick 7 years ago.  The pain meds help take the edge off, but they make me incredibly nauseous.  I mean, if I move I have to fight back the gagging.  So I have two choices… extreme debilitating pain, nausea, or diarrhea or extreme nausea.  Peachy.

I just hate this.  I’ve been useless since Thursday night.  Despite the IV yesterday, I’m dehydrated again, so I barely even get up to go to the bathroom.  Either it’s too painful to walk, or I’m too dizzy and nauseated.  I don’t know how to make it through work like this, which panics me too.  I lost a good handful of days to Noodle’s back to back ear infections, and I don’t want to get in trouble for missing more days… even though I can’t help it.  I don’t know.

I’m glad I made it through Christmas, and what a good Christmas it was.  My daughter told me “Mom, this was the best Christmas ever.” and that made it worth it.  However, I would have much rather gone to work yesterday with my new pens and post-its, and counted down the minutes to get out of there instead of being stuck immobile on my couch, fighting tears from the pain.

This disease genuinely sucks sometimes

Infusions and Awareness Week

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Mouse Juice Time

                       Mouse Juice Time

December 1-7th is Crohn’s and Colitis Awareness week.  It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion.  As you can see from my expression up there, I’m not having a good morning.  I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up.  It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears.  I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.

I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early.  I had thought my appointment was at 9am, however it was set for 10am.  All the rushing around, and getting anxious being stuck in the bathroom for nothing.  Sitting in traffic I about lost it.  I did lose it after having to stop at a gas station on my way in to use the restroom.

So here I am.  After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm.  Whatever works I guess.  He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand).  At least he’s willing to get creative.  However, being stabbed repeatedly isn’t my cup of tea after a rough morning.  ::Sigh::

I’ve been doing alright lately.  I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious.  Most notably was a loss of appetite (I like my food dammit) and hair-loss.  The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome).   I figured screw it.

After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly.  Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp.  Welp, here I am.. still kicking on Remicade.  Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp.  I’ll argue my case later with my GI.  If Remicade ultimately fails, I’m still up for trying that new medication, but whatever.  Take it as it comes.

One of the things that really, really gets to me, is the fatigue.  I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day.  Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up.  I think that’s the most frustrating part of it.  Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired.  I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.

This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease.  I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost.  All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more.  It’s hard explaining to people that it’s more than a tummy ache… over and over again.

No matter what you explain, or how many times you explain it, the social effects are… depressing.  I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident).  I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium.  I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”.  The fact that I use up my spoons some days before I even make it into my clothes just pisses people off.  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

It could be worse though, and has been worse.  Most days I’ve been managing to keep a positive outlook, some days though it just sucks.  Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading.  Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less.  Some days, even my online support network can’t even get me out of a funk.  Either way, the best thing to remember is that those of us with IBD are not alone.  It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.

Days like today?  Where I used up all my spoons before I put my shoes on?  I’ll make it, you’ll make it, and things will get better.