Fatigue & Stfu

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I am exhausted, I feel like I haven’t slept in days. It’s reminiscent of my rambunctious teenage years, where I’d go out drinking cheap beer and staying up all night, but still some how make it to work the next morning and survive.  That’s what it feels like anyway, even though I slept almost 24 hours since Saturday Night.

My eyes burn, my head is woozy, my muscles feel like I just got done running a marathon (add in that my fatass doesn’t run). I’m so tired, so out of it, than when I went to stand up earlier at work, I almost blacked out. (BP dropped too fast) Almost everyone I have seen or talked to today, in and out of work, asked me if I was okay. Apparently I look like death despite my jet black winged eyeliner.

This is the worst my fatigue has been in a decade, since I was first sick with (undiagnosed) Crohn’s Disease. I’m usually a trooper when it comes to toughing it out, coping, and getting through work, but it was enough that I called off work yesterday. It’s just rough. I’m trying to cover everything, you know, up my teas, oils, supplements, and eating, all the way to getting enough sunlight. It’s a task just to get out of bed these past few days, not because of the pain, but because my lack of energy. I can deal with the pain, just not having the energy to sit up in bed is what’s kicking my ass. I’ll either figure it out, or it’ll eventually pass, but… I’m having a hard time.

I don’t particularly like bringing attention to myself at work when I’m sick either. It’s really nice when people ask how I am, but I get really aggravated when it’s followed up with a typical “I know how you feel, I had…” statement. One girl at work really is bad at it, and I’ve been trying for years at this point to not snap at her. This morning it went like this:

Her: “How are you feeling?” Me: Not great.. Her: “Oh, I know how you feel! I’ve been tired lately and this weather has been giving me a headache!!”.

I smile, and go back to work, but in my head I just scream “a booze headache and lack of sleep isn’t the same as being sick for a decade!” The worst is when the other girl at the office says “Well, if you feel that bad, just go home!” I’m sorry, I can’t. If I went home every time I felt like shit, I’d maybe make it to the office once a week, I have to support myself, I don’t have any other choice.

Yes, it’s a bit of a pity party, but I’m tired of it. I’m not going to say anything nasty, but you bet that I’m strangling them in my head when I’m smiling on the outside.

I’m just frustrated.

 

I hope I start feeling more like myself soon.

 

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.. because I’m still here.

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I planted my garden today with a little help from Stevie. Apparently, I’m still not strong enough to drive those metal poles (for my cucumbers and green beans) into the ground far enough to be stable. I planted two different kinds of tomatoes, some bell peppers, of course my green beans and cucumbers (cucumber salad here I come!), radishes, lettuce and carrots. I’m excited that it’s finally warming up enough to plant, although we had a frost advisory last night.

I didn’t plant any flowers yet, that’ll be next paycheck as I tend to go a little overboard with them. Definitely looking forward to picking them out. I know I’m going to get Margarite Daisies, Snapdragons, and some double impatiens if I can find them. I have so many pots to fill, and a flower bed (any shadow loving flower suggestions anyone?). My short kid is in charge of her flower bed, so I’m assuming she’ll pick out the brightest colors she can find.

Haven’t been feeling my best lately, my Crohns is acting up just in time for World IBD Day. It’s really doing a number on my outlook/mood though. I guess I’m just frustrated that it’s limiting what I can do again, and I’ve been missing a bit of work. That, and of course, I’m worried that I’m going to make those around me upset. I’m sure my co-workers are getting tired of me being always sick, and I don’t want to worry my family. My daughter doesn’t seem too phased by it though, and Stevie is really understanding, which helps a lot.

I’m glad I was able to work through getting sick while weeding the garden earlier. I’m really proud of the fact that I was able to continue working through the pain (with the exception of a bathroom break) and get everything done. It really bothers me when I am not able to do what I used to, but I’m slowly learning how to pace myself and how to work around limitations. Although I’m pretty sure that I got a little snappy when I was offered help, but whatev.

Now? Time for some grilled pork chops (that I’m not grilling.. yay!), artichokes and baked beans. Then I shall be curling up to finish my book. Good weekend.

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.

Stress: It’ll Make or Break You. (Hint: Make isn’t fun either.)

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There’s always another curve-ball it seems like. It’s always one thing after another, or at least that’s what it seems like this week. Sometimes, it’s hard to keep a brave face on, to keep the smile going.  It feels like I’ve been asking for a break from the Universe for years now, but that’s how it goes.

After my surgery, I was positive that things would get a bit easier.  I mean, hell, I wouldn’t be admitted for sleepovers at my favorite hospital every month.. so that would be a bonus? While that’s absolutely true, I haven’t had more than a couple bad days with my Crohn’s Disease since, life just throws one more thing at me after another.

So surgery happened, and then the headaches/migraines started. MRIs (and the different variations of that I had done) showed nothing. The doctor ran all the neurological tests, and nothing. Tried some pills, and after a month and change, I occasionally get a day where I only get a headache for part of it.

I finally start getting used to the headaches, and learn how to “head them off” when they start, and start altering my lifestyle to maybe get rid of them all together. Stress makes everything worse, so why not lower stress in addition to exercise (hello weight gain from new headache medicine) and eating better. Things are looking up!

Until my car takes a big giant shit on that plan. My transmission hates me, so after it started slipping gears, I took it to my mechanic, who despite my insistence that I just had one done, blew $150 and gave my transmission a flush. That didn’t work, so I took it to a well-known transmission joint. They kept it for a week, changed out the valve body and a couple of other things.. and nada. So I took it back again, and for the tune of $1500 to $1800, they are fixing it. They said it would be a week… that was more than two weeks ago.

We rented a car for the first week and a half, but after running dangerously short on money (and hello beginning of the month, also known as *ding* your mortgage is due) we returned it.. after being told, oh, it’ll be done by Monday at the latest. Well, that was this past Monday.

While all of this is going on, Ryan’s job runs out of work. So when we need the money the most, we’re relying on my income and side jobs. It kind of works out, I was able to drive his truck to work this week a bit, but of course the side jobs come out of the woodwork on days I have to work.. so I was out of luck. Thankfully Ryan’s brother lent me his car, which was a life saver. Lets just say I was having an anxiety attack before he offered.

It doesn’t help that the guy snaps on me whenever I call for an update (because they have YET to call me to let me know what’s going on). So after a long day at work, where my office is SEVERELY understaffed temporarily (of course, while all of this is going on.. seriously, I must have some bad karma or something) and I’m running at stressed-the-fuck-out, I get to call this guy, and get snapped on, when I’m just looking for an update on when my life might get easier.

Then add into that, my daughter’s school is nothing but a pain. School starts on Tuesday, and of course, they have yet to send out ANYTHING about transportation or, I don’t know, school supplies or even her teacher. I’ve been trying to arrange a bus to pick her up from daycare, and it’s a major pain in the ass. Meet and Greet is on Monday (and I have no idea who her teacher is) and I promise this right now, if I go in, and they don’t have transportation set up, I will have a melt down.

All of this is going on, and it takes a toll on you. Ryan and I have been fighting like cats and dogs over the stupidest shit, just because we’re both so stressed out. It’s hard to remember that the other person didn’t cause this. Then, I find myself snapping on Noodle over stuff I normally let slide.. and then apologizing to her and beating myself up over it for days. It’s not easy, and I’m just waiting for a call that something else has gone wrong.

I’m trying to focus on the good things.  Like we both *do* have incomes, and mine is stable. Noodle got to go to the summer camp at her daycare, so instead of dealing with me being stressed out, she got to go mini golfing, to the water park and beach and to a festival. While I beat myself up about this being a stressful summer, I have to remind myself, Noodle’s had a pretty good one! I have to remember, I have my house, which thankfully didn’t incur any damage in that tornado that plowed through town last week. As of now, my car is being fixed, even if it’s a major inconvenience at the moment, in the years past, we didn’t have cars, or relied on one. Of course, even though my body isn’t completely okay, my Crohn’s is damn near in remission for the first time in just under a decade.

I’ve got to remind myself, while things are stressful right now, I’m damned lucky to be sitting at home, writing, with a cup of tea, a sleeping child, and my dogs (and asshole cat) lounging on the couch. They could be a lot worse, they have been a lot worse. We are lucky.

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!

Tacos Are Now On The Naughty List

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Wednesday started out innocent enough.  I dragged my lazy butt to work, worked the morning away, and then went out to a great Mexican joint down the street with two of my managers.  I’ve been there a few times, and every dish I had was fantastic.  I went low key, tacos (real tacos) with beans and rice.  All foods I’ve never had a problem with, and let me tell you, they were delicious.

Back to work I went, and in a couple of hours, my stomach started bothering me.  With having Crohns Disease, that’s not completely out of the norm, but I hadn’t eaten anything I couldn’t tolerate.  Whatever.

Once I got home, I decided to skip right over dinner and go lay down.  I was feeling pretty nauseated, but again, that’s not out of the norm lately.  I figured I’d go sleep it off.  Well, I slept… for an hour.  That oh-my-god-I-have-3-seconds-until-I-hurl feeling woke me up and I stumbled straight for the toilet.

I have never puked that hard in my entire life.  Not even that one night in my early twenties where I didn’t have to pay for patron shots and consumed enough to cost one of my paychecks if I did.  Never.  Puked.  That.  Hard.  The only time I had thrown up that hard was back in my teen years when I got myself a good ole case of food poisoning from an under-cooked burger.  Remembering how long that lasted, and the relief I got in the ER, I figured oh well.  I had the boyfriend call my GI (with Crohns, you can never be too careful, I figured worst case scenario, he couldn’t say I didn’t tell him I went to the ER) and then promptly drive my puking self all the way to the hospital.  I spent the ride in the backseat going “oh my god, where are we??!  Why are we not there yet?!!?”

The ER I frequent is staffed with some very wonderful doctors and some sweet nurses.  They’ve never questioned me when I have shown up… for any reason.  I’m pretty knowledgeable about my body and have a pretty extensive chart.  So I explain that I think I have food poisoning, and yes, I have Crohns.  Mr. ER doc doses me up with some Zofran so I can stop puking, and orders an x-ray to be safe.  I curl up in my ER bed watching the kid and boyfriend play Minecraft on the tablet.  Half an hour later the doc comes back.

“The X-ray showed a loop of intestine that may be blocked, I hate to do this, but I want you to have a catscan to make sure you don’t have an obstruction.  Especially with your history.”  I agreed but had to fight off the urge to roll my eyes.  I’ve had so many obstructions, I’ve lost count… this couldn’t possibly be one.  I was absolutely *fine* this morning, no pain, and plus, I usually don’t puke until the later stages… and I couldn’t have crossed my obstruction timeline in a third of the time.  :::Pukes::: More Zofran please!!!  Oh god, I have to drink contrast??!

Insert catscan here, insert horrible joke about glowing with radiation.  Insert nurses prediction on where said contrast was going to end up.

When I got back from the catscan, I sent the boyfriend and kid to sleep out on the couch in the waiting room (way better than the chairs they had in my little hole).  I figured I had food poisoning.  In another hour the Zofran would kick the crap out of whatever pukey little bug I had, and I’d be off to sleep at home.

No sooner than I settled back in my little bed, I had to grab the puke bag.  The nurse called it… all that contrast came right back up.  As I’m sitting there puking, the nurse runs in with the doctor.  Apparently I somehow do have an obstruction, and now they want to put in an NG tube.  I had already maxed out my Zofran, and seeing how I’d rather sit on the toilet for hours, rather than puke, I agreed.

The tube helped, and I was able to get some pain medication and sleep.  (Bonus: I accidentally pulled it out later… and I got to keep it out! Hell to the yeah!)  I stayed in the ER until morning since the hospital was full, but they finally got me a room… which is where I am now.  It’s Friday.

After speaking with the surgeon/a radiologist/my GI, I basically came out with one hodge-podge of a story.  Surgeon and radiologist see a stricture, a bad one at that… with little to no inflammation.  That explains my lack of symptoms… and skipping from cramping straight to puking my brains out.  GI doctor was angry I didn’t want to take one kind of my medication anymore, and we had to have the “quality of life” argument again.

[Something I’ve learned along this journey, is that quality of life is really, really important.  I would much rather have a couple of bad days here and there and *not* take a medication than take a medication that makes me lose my hair, lose my appetite and gives me the worst fatigue I’ve ever felt (and coming from someone who deals with fatigue on a daily basis, that is saying something).  I’d much rather spend time with my family than all my time sleeping.]

So long story short, barring some horrible incident when I’m finally allowed to eat again, I’ll be allowed to go home “sometime this weekend”.  I’m just hoping for before the massive snow storm that’s supposed to hit Saturday night.

I really wish I was home right now, I’m pretty home sick after only a few days.  It has nothing to do with the care I get here, I drive 40 minutes past 4 other hospitals for a reason, I just miss my family and hate being reminded that I am indeed mortal.  I know that my little one is having a sleep over with one of her favorite people ever tonight (thanks Jess!) and is having a blast… but I still miss her.  After losing so much time being sick, I hate losing any time at all.

I’ll be finally switching to the new medication I’ve been rambling about (the name escapes me at the moment) and I did agree to go on the shall-not-be-named medication I hate, but at a low low LOW dose (I was on such a high dose last time, it was beyond what “high dose” is considered normal- hence the horrible symptoms.)  I’ll also be stuck weaning off of the prednisone again too.. because yup… during a morphine nap, a good ole bag of prednisone got hooked up to my IV.  Sneaky Sneaky.  Maybe they’ve caught on that I’ll try to refuse if I’m awake.  To think, I *just* got rid of the moon face too.  That’s a whole different blog though… one I don’t feel like mentally visiting right this second.

All I know is that I really, truly hate NG tubes, seeping IVs (my hand doubled in size overnight) and now apparently tacos.  Oh tacos.. you will be missed.

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.