Wish Me Luck

I’ve been thinking a lot about what I went through with my scopes a month ago. Some will know the story from This Post but long story short I was supposed to get Profinal and be put right out for the procedures. My fear is such that it will override sedation. The doc on the day absolutely refused to do so. He completely blew me off actually turning his back to me and refusing to discuss it further or answer any other questions I had for him.

He had the nurse chasing me around the room with freezing spray for the endoscopy and I wasn’t done asking questions. Doc refused to talk to me further.

This is all while Mr. CrankyPants and I are standing in the middle of a dumpy room in my gown carrying all my stuff, because apparently there were no stretchers to be found.

When one finally did come, they got me on it, and I started to cry. The nurse didn’t try to comfort me, she just wanted to shut me up to get the mouth piece in my mouth and knock me out.

For those who don’t know I warned them that my fear would override the sedation. It did. I woke up in the middle of my colonoscopy in agony. He was hurting my stomach so bad. I was promised that if I were to come to that they would give me Profinal. I’m pretty sure that didn’t happen given I could clearly hear the Dr. say and I quote, “We are almost done.” He said this twice. I remember the feel of the scope being taken out.

The pain was horrible I was rocking back and forth saying it hurts, it hurts.

The doc never came to see me after or address this.

I was sent packing from the hospital throwing up.

I’m so done with being treated like shit by the medical world. This has really done a number on me. There’s reasons I won’t go into why this is more traumatic for me then maybe some. I made the doc aware of those reasons and he still ignored me. He didn’t even acknowledge I had said anything.

I also still have a lot of pain where it hurt when I woke up from the procedure. I know I have ulcers but they didn’t hurt this much before. I wonder if the doc did damage.

I’ve had a few people tell me I should report this. I’ve had another Dr. say I should never wake up during a procedure, and I’ve had some tell me to ditch him as my Internist but he’s my only choice up here. Not that I want to see him again at this point unless it’s to call him on all this.

All this to tell you that after a lot of thought, I’ve decided to report it to the hospital.  I haven’t done it sooner because I’ve been to scared of being black listed but, I’m tired of the medical world getting away with bad treatment. I’m done letting fear stop me from reporting it.

I called the hospital today. I found out that they have a complaints department. I’m going to start there. Unfortunately, I called at 4:32 pm only to find out that they close at 4:30 pm. I did leave a message for them to call me back, and I probably won’t wait for them too. I’ll call them tomorrow.

The above situation is one of quite few up here I’ve had to deal with. No wonder people develop phobias of medical anything (Mine is bad). It’s not what they like to call “White coat syndrome.” It’s fear of being abused or blown off. If I don’t speak up, who will. Maybe I can stop this from happening to someone else.

I’m only one person but it only takes one to start the process of change and awareness. I’m scared, but I’ll make the call anyway.

So wish me luck!

Warmer Days & Rainbows,

CrankyPants

 

A Tiny Add On to Yesterday’s “Results” Post

Reminder: I started a Facebook support group for those living with autoimmune disease. I’d love to have you join if you’re interested. Feel free to invite anyone you think may benefit or be interested. I’d love to see you there!   https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

I forgot to mention that the Dr. said I should consider the FodMap diet to look after my fake diagnosis of IBS (Aka BS). Really?! I was on a candida diet for three years. I took out all carbs, sugar and anything you can think of that wasn’t healthy out. You know where it got me? I got sicker, and I went into starvation mode.

I looked up the FodMap diet and I pretty much don’t eat anything that you’re not supposed to on it now. The only think I’d need to change is going to gluten free bread.

I wish I could wake my Dr. up!

Anyway, hope everyone has a good day. As you can probably tell It’s been a rough haul lately for me.

Sparkly Snow & Sunshine,

CrankyPants

“Results..”

So it’s been a while since I blogged last. I’ve had a hard time processing everything. I’ve since received my biopsy “results.” That’s in quotes since they found nothing so they’re calling it IBS. I call it BS.  This seems to be the way it always goes for me. Something is very wrong, I know in my “knower” there’s more then IBS happening but Docs don’t believe me. I even asked the doc if 8 months of fissures that caused me the worst pain of my life come from IBS? He couldn’t answer me.

I forgot to ask if being on Enbrel might have masked things, since the fissures cleared up when I went on it. They didn’t get to see them. My friend who battles crohns said it could definitely mask things and just because they didn’t find things in the scope or biopsies doesn’t mean they’re not there.

This is how it went before I ended up losing my bladder to IC (aka lupus they didn’t know I had back then).

This is how it went for three years trying to get answers with regards to my joint pain. Nothing showed up in my blood work other then being ANA positive which they decided was a false positive. It wasn’t. Guess what? All along I had RA and Lupus and I knew it. Trying to get docs to believe me was the problem. It wasn’t until Raynauds showed up in front of my Dr. that he finally believed something was very wrong. I had already gone through 2 Rheumies that blew me off and a pain clinic prior to this.Then I was finally offered a referral to the Internist who knew I was really ill as soon as he saw me. He diagnosed me that day and started me on meds that day. Next time I saw him, he changed his mind. And so it went back and forth for a time until I was sent to another Rheumie, who knew something autoimmune was going on but because I didn’t fit her box, she called it mixed connective tissue disease not yet determined. Say what?! In other words, something is wrong but we don’t know what.  Oh and by the way RA is now showing up in my blood work I found out at this appointment. My inflammation markers are up. Add in the doc tells me I have protein in my urine again too. Not as bad as before but my kidneys are being watched closely for lupus nephritis.

Having said that I was also trying to tell the doc I can’t walk on my foot because of my big toe joint pain and locking. He shrugged and said take anti- inflammatories. Ummm..I have strict instructions not to take any since my kidneys are at risk. I’m allowed one Advil a day and that’s pushing it. How does he not know this when I tell him every time I’m in there and he has it in his records. He knows they’re dangerous for my kidneys, not to mention my gut. So even though I’m already on Percocet , he scripts me Tramadol for my foot pain and explains it away as my RA. I know it’s my RA, but what can we do to fix it?! I was hoping to be referred to an orthopedic surgeon, but apparently Tramadol is going to fix things. Not! I told him no cortisone shots but he tried to suggest it anyway.

It gets better (Insert sarcasm). He asked me who scripted me Viberzi for my gut. Again say what? I looked at him and said, “You did.” It’s like he doesn’t know me at all after having been his patient for 6 years. So for now I’m still on Viberzi and left with nowhere else to turn for help even though I know something is wrong.. I also had to ask him about the ulcers they found in my stomach during the scope. He actually asked me if my stomach hurt. *By this point I wonder if I was visibly shaking my head.* Yes it hurts hence the damn tests. So he gave me ppi’s for that. So far they haven’t helped but we’ll see.

I guess as usual I will be waiting until I reach a crisis to actually get answers for what’s wrong with my gut. Sad that the system works this way. I would have asked for a referral to specialists but I know my GP would not have referred me. When I first asked to see the Internist about my joint pain the doc said and I quote, “He won’t be interested in you.” Gee thanks.

So I know unless my GP has something visual he won’t refer me to any specialists.

I told him about my gallbladder pain and he ignored me. Arrghhh. Why can’t I just get a Dr. that listens and wants to actually help? That shouldn’t be too much to ask. We can’t just switch Dr.’s up here or I would.

On a bit of a different note. I have now set up an autoimmune disease support group on FB. It’s s a closed group so there will be complete privacy and freedom to share things we otherwise wouldn’t. If any of you are interested in joining I’ve posted the link below. If you know of anyone you think might be interested or benefit. Feel free to share the link. I’d love to have you join.

https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

You will be asked three questions before approval.

Better Days & Where’s spring,

CrankyPants

 

 

 

Fatigue

CrankyPants is back and apparently writing in third person. This is the kind of silliness that happens when she’s taken her pain killers before bed.

It’s taken me a long time to recover from those two scopes I had recently. Hey look at that. No more third person. Well pat me on the back and hand me a cookie.

Now what was I saying??

Right recovery. I thought I was going to be pretty much back to me the next day. Pffft! That did not happen. It took 4 days for my stomach to stop hurting from the scope. I’m just past two weeks from the tests and I still now have a cough that won’t subside and I still feel the path of the endoscopy. My voice is raspy and annoying. Is there a conspiracy here? Did Mr. CrankyPants ask them to quiet my voice?!

And where they put that damn IV is still tender. I will karate chop anyone who ever tries to put an IV there again. Medical world consider yourself warned. I know my pain can stop a karate chop but, adrenaline can allow one to happen. Know what I’m saying? Good.

I wonder if between the lupus, rheumatoid, and immune suppressants I just won’t recover as quickly as a healthy person would.

Well now to get off the rabbit trail I apparently went down without intention…

I wanted to ask you all about fatigue.

I know the majority of if not all those fighting autoimmune disease experience fatigue. I wonder if it can be different in some ways for us all. What I was wondering is if you battle fatigue, how does is present for you?

For me most of the time it seems to be like a lethargy. Everything feels like it’s an effort or a chore. Mornings are the worst. I wake up between 7-8 am every day, get my breakie and have a decaf coffee. Once I sit down with my coffee, I just can’t get going. It takes me until between 9:30-10:00 to get the energy to take my shower. Some might see that as laziness. I don’t think it is.

After my shower I have a bit of a boost to get everything accomplished I need to. I then nap in the afternoon. (Pain killers I take then make me sleepy).

After my nap I still have no get up and go, but I have to because things have to get done. So I do them. Including a bit of exercise.

If I have a particularly busy day, I seem to get worn out really quickly. Sometimes I shake my head wondering how I could possibly be this worn out when I’m only doing maybe half of what an average healthy person does. It’s frustrating.

There are times where I feel the extreme fatigue where it’s debilitating and very hard to function. It’s hard to explain, but those who have it will know what I mean. No amount of sleep fixes it. It feels as if you haven’t slept in weeks, but for no apparent reason other then our bodies are trying to kill us and that’s kind of exhausting.

Do you guys experience both? Do you experience one more then the other?

And because it seems I’m full of questions tonight, do you feel guilt with it?

Oh the guilt I battle. I don’t work other than my little candle business. Mr. CrankyPants works hard and long hours. I feel like I have no right to feel so draggy when I compare my day to his. I feel useless often too, even though I actually get a fair amount accomplished. It just doesn’t feel like enough. Like I could do if I were healthy.

On a side note I have my follow up Dr.’s appointment to get my biopsy, blood test and the other sample test results on Tues. I’m a little shall we say nervous. I don’t want to have what I suspect, but I need answers at the same time for what’s wrong, because something is really wrong. I hope my GP will listen to me. He often doesn’t. He’s the type who will give you your results and that’s all he says. I’m left with thinking, well what now?! I hope I remember to ask him the “What now” question. My anxiety is very high when I have to go to the docs.

I should probably write my questions down ahead of time. If he sees my list, he’ll ask me what’s on it.

Anyway I’d love to hear from you all on your fatigue experiences.

I’ll also be waiting for that cookie I mentioned above. Maybe it will fix my fatigue. It’s worth a try don’t you think? 😉

No More Snow & Spring Flowers,

CrankyPants

 

The Other Side of the Scopes

Where to start..

I think I’ll start with a thank you to all of you for your support. It really meant a lot. It sure helps.

There was good and bad about the whole thing. I’ll start with

The Good

  • No stomach pain or cramps with the prep
  • The prep didn’t taste horrible at all as I’d expected
  • I never felt hunger which is very weird for me, but a gift through this at the same time
  • I got a few hours sleep the night of prep
  • It didn’t cause too much damage, since it’s mostly liquid. (Sorry for the tmi).
  • I made it through the prep and to the hospital with no accidents. That’s a definite worry with the prep. So double win there.

The bad:

  • The nurses knew very little to nothing about some of the medications I’m on, They should know about them
  • The staff knows nothing about urostomies so I had to make sure things were looked after there. Frustrating
  • The Dr. wouldn’t listen to me. He flat out refused to give me Profinal that I was promised to knock me right out
  • I wasn’t finished discussing it or other questions I had with him, but he just turned away and ordered the nurse to proceed. Even Mr. CrankyPants was there saying knock her out and no response
  • I warned them I don’t sedate well but as is usually my experience they don’t believe me
  • As a result I woke up during the procedure crying in pain. I remember them saying we’re almost done. I sure hope they gave me more sedation. I’m not lying that has now traumatized me further. I almost died in another proceedure in the past because docs wouldn’t believe I wasn’t frozen or sedated even though they had done both. I was screaming in pain and they wouldn’t listen until again Mr. CrankyPants spoke up and pointed out my dangerously high blood pressure. Why weren’t they watching?!  So you can see this being one of many other experiences of the like why I have severe anxiety with anything medical. This brought that all back. I even told the Dr. I’d been abused and he didn’t listen.
  • They couldn’t have picked a more painful place to put the IV.  I’m still in a lot of pain from it today.
  • In the recovery room. They didn’t offer me any food or drink and I had gone almost 48 hours without. I was sick and dizzy as hell and they sent me packing that way. It was sub-par care at best. Kind of awful

The Results:

  • I have an inflamed esophagus and acid reflux.  (A total shock to me as I’ve not had symptoms)
  • I have stomach ulcers. (Nice of my GP to assume my stomach pain came from ibs without testing me)
  • I have internal hemorrhoids that nothing can be done with at the moment since they aren’t swelled. Having said that, to eventually get something done, I have to go through a surgeon and be awake for the procedure. I’m sure you can imagine what I think of that right now.
  • I had a number of biopsies done. They are looking for micro colitis, (which is when it doesn’t show up in the scope), celiac, cancer and I hope because I asked for it they are also looking for lupus and rheumatoid since, I’m diagnosed with it but it doesn’t show up in my blood work. Who knows if the Dr. will have actually listened to me and complied though
  • Everything else looked good and clear. So minus what did show, I still at this point have no idea what’s wrong ,and there is something very wrong. I don’t want to have these diseases but I really need answers. I’m still losing weight and I shouldn’t be. I’m at 102 pounds at 5 ‘1. That’s underweight. I still can’t stop the frequency. That’s not normal.
  • So in two weeks time I have to follow up with my GP who doesn’t even know I had these procedures done to get the results of the biopsies. I will also be getting the results of my blood work I had done through the GP a couple of weeks ago.

I’m glad for now that it’s over with, but I wish I had more answers. I wish I could storm into that hospital and give them a piece of my mind. I wish I could teach the medical world about the things I live with like my urostomy. You know the nurse didn’t even know what Enbrel is?!

So today is the day after my scopes. My gut hurts a bit, my throat way down is tender but nothing unbearable. I’m just resting. The laxatives are still working some so, I’m staying home.

Have you had these kind of scopes? What was your experience?

Over & Out,

CrankyPants

 

 

 

 

Prep Day

Tomorrow is prep day for my colonoscopy and endoscopy on Tues. I’m so so stressed. The thought of going without food, having to take heavy duty laxatives, the pain it will cause me. Uggggh! Why,why can’t they find an easier on patients way to do these tests.

How the hell am I supposed to take all my medications on an empty stomach without getting sick?! You can’t get sick because you need to keep the laxatives down. I can’t take Gravol. I’m allergic and I forgot to get a Zofran script in time.

This is going to be pure torture. It causes the very thing I’m trying to stop.

I need answers. I need these tests, I just can’t wrap my mind around the prep.

I’ve been though prep once before that was actually even worse than this one. It was for having my bladder removed. I hurled because I couldn’t stomach the shit load of antibiotics they made me take after two days of fasting and emptying out. Two days prior to the surgery, then the day of, and 5 days after of nothing by mouth. 9 days I went without food or fluids other then IV.

This I have to fast for tomorrow, and I won’t be able to eat until sometime after the tests on Tuesday. If all goes as planned, the tests are at 9:30 am thankfully.

Tomorrow I’m allowed to have clear fluids. I’m stocked up on banana Popsicles,  Jello, chicken broth (Although I’m allergic to garlic & onion and chicken broth has both. So for that only if I’m really desperate). And I have lots of Gatorade.

I’ve been given permission to take Ativan before I go to the hospital since my fear is extreme. In fact so extreme with medical procedures that it will trump sedation. Ativan does nothing for me when this fear hits. I will take it anyway before I go and again while I’m there waiting.

I’m also being put right to sleep because of the above. Sedation won’t work for me. I’m grateful they’re willing to put me to sleep. I don’t want to know or be aware.

So wish me luck. I’m going to be one hangry, scared person for the next couple of days. Poor Mr. CrankyPants. He’s going to be home to help me. There is no way I’d be able to look after our needy dog while going through this. I also won’t be able to drive myself.

Tomorrow is our family day holiday so Mr. CrankyPants is home. Tues. he’s taken a day off work to take me to the hospital and look after things after.

I’m scared too that the diagnosis is going to be what I suspect. The other side is that I’m scared things are so bad and there won’t be answers. Sigh. They will be doing biopsies too; With those I’ll have to wait a week or so for answers, but anything they find with the scopes, I’ll know as soon as I wake up enough.

Gahh I want out!

Scared & Stressed,

CrankyPants

 

CrankyPants Rant…

Before I start I want to say that I realize most people have good intentions and just want to help. Having said that, with all do respect please I beg you stop trying to fix our disease. It’s not helpful. If you want to be helpful just listen to us, be there for us, maybe be willing to work around our illness to spend time with us, make it okay for us to ask for help if we need it. Read up on what we are living with. Learn about it. You can’t know how much that would mean to us. Cry with us, laugh with us, walk alongside us.

Please don’t say things like:

If you ate healthy you wouldn’t have RA.

I swear if I hear that one more time I might slap someone. Healthy eating might, and I say might help with inflammation but it neither causes or cures autoimmune disease. That kind of comment actually blames us for getting these diseases. The last thing we need is guilt for being ill.

If you eat healthy you’ll be better.

No we won’t it’s a chronic progressive illness. Babies get these illnesses so it can’t be blamed on food. Period.

My father’s sister’s brother’s uncle has “lupus,ra…” and he’s doing just fine.

Who the hell cares. Don’t compare me to someone else. Everyone is affected differently. Many hide the pain, and things can change in a nano second.

You are lazy.

You’re ignorant. No we’re not. We’re sick. We have a fatigue so extreme it’s debilitating. No amount of sleep can fix it. Walk one day in our shoes and you likely wouldn’t be able to handle it. Our body is trying to kill us. That’s tiring. Not to mention the wicked side effects of most of the meds we are on.

You just need to get out more.

Don’t you think that we know that? Furthermore don’t you think that if we could, we would? Damn if only we could.

You need more exercise.

You need to shut the hell up. You cannot imagine the kind of pain we live with and many of us still do exercise. Imagine every joint in your body feeling severely sprained, never getting better and only getting worse. Add the fatigue, breathing issues, gut issues…and much more. Now you exercise. Get back to me on how that goes for you. Dr’s I’m talking to you too.

You need to lose weight it’s hard on your joints.

I thankfully haven’t had to hear this one. I’m underweight because I’m ill. Case and point right there. My joints are very painful. Weight isn’t causing it. Again, Dr’s listen up. And please Dr’s while we’re at it learn about these diseases. I had a Dr. tell me I don’t fit the box for lupus. What box?! We’re all different. Get your heads out of your text books and be willing to learn from your patients.

You don’t look sick.

What does sick look like prey tell? Someone could be dying with heart disease but you wouldn’t physically see it. Just because we don’t look sick doesn’t mean we aren’t. We become very good at hiding it, in part to avoid all these kinds of comments. This is a particularity tough one when using handicapped parking without any aids. It’s very likely it’s taken every bit of strength and energy for us to even get up and or shower in the morning. You have no idea. You won’t see that when we’re out and about. You won’t see the extreme suffering we go through when we’re at home. If we happen to get out once in a while it’s a big deal. Oh and you won’t see just how much we pay for said outing later.

You should try a homeopathic Dr. everything starts with the gut. Or try “abc” diet. It helped/cured so and so..

This one ticked me off today. Just know that when one is this sick we will likely have tried just about everything out there to get better. I did a two year candida diet. I went off all carbs, sugar, and anything you can think of that wasn’t healthy. You know where it got me? Sicker. That’s right sicker and very underweight. I did all the so called right things to no avail And if it all starts with the gut then again, why do young children get these illnesses? Again these diseases affect us all differently. Keep the “you should’s” to yourself.

If I tell you I have RA, and Lupus and you say something like, “I have a sore pinky finger.”

I understand it hurts. I’m sympathetic to you, but you will recover. Maybe if someone tells you they’re battling an illness like the above, listen show interest learn. Don’t automatically jump to telling them about your pain. It’s hard for us to talk about it, so when we do we likely trust you and want to be heard. We want you to take interest. Don’t confuse that with wanting pity or attention. It’s not what we’re after. Sometimes we just need to share our pain. They are lonely diseases.

I know there’s many more but since this is getting long I’ll stop there. Please add the things you hear that drive you bat shit crazy in the comments. Wherever there’s a chance to educate others let’s take it!

What do you hear that is upsetting? If I get a good list from you guys, I’ll post it with your permission.

Sunny days & Getting out,

CrankyPants

 

 

Medical Marijuana

What are your thoughts on medical marijuana? Is it legal where you are? Have you tried it, or do you want to try it?

It’s legal here with an mm card. Soon it will be legal to grow. I’m all for it. I’d like to learn how to grow it once it becomes legal to do so. It’s a cheaper option.

The only reason I’m not using it now, is that I’m on Enbrel and I’m fairly new on it. I need to know if and how Enbrel is going to help or not. If I add medical marijuana I won’t know which treatment is doing what.

I’ve tried it in the past when I first started getting ill. I also have epilepsy and I wanted to see how it would help with that. Since I never touched it or any drug growing up, I was nervous and uncertain so I never used the full scripted dose. I didn’t find it helped a whole lot. Also I was vaping and I hated vaping. MM is known to really help with crohn’s, colitis, pain, sleep, inflammation, and all sorts of stuff.

If I end up being diagnosed with crohn’s or colitis, I’ve heard so many people talk about how mm has been life changing for them. I will give it a try. I won’t go back to vaping. I just don’t like the taste or smell, or that I have to sit in our cold garage to vape. Mr. CrankyPants also can’t stand the smell. It will leak in the house from our garage if I vape out there.

I am interested in the tinctures mostly. I’m sure some of you have heard of  the “Charlotte’s Web” strain and or Rick Simpson’s oil. Those are the two main ones I’m interested in.

I know for pain, sleep, epilepsy and gut issues, Indica with low thc and high cbd are the best options. To help with fatigue sativa with higher thc and cbd are good options. But the latter is not good for epilepsy trust me on that one. I learned the hard way. I have done my research and talked to the Dr. (Not my GP) and talked with the legal government companies I used to get it from.

I think it’s worth giving it a second chance. If it helps. Especially if I have crohns or colitis. Speaking of which the prep begins Monday, and Tuesday is the day of the scopes. I’m shaking in my boots. I know I need this. I just dread the whole process. The prep will be brutal. Sorry for going off on a rabbit trail there. Back to our regularly scheduled post..

I’d love to hear from you on this. What say you?

Less Wind & More Sun,

CrankyPants

 

Arrrgh!

When my Insurance company and the Enbrel company are butting heads on a new payment protocol that’s not working. I’m left without my meds. I called last Friday to renew the script. I found out Tuesday there was an issue. It’s now Thurs. and the issue still isn’t resolved. Tomorrow is when I’m due for my next Enbrel injection and I’ve got none left. I called in what should have been lots of time to have it by now.

If that’s not enough, I shipped a package to a customer Monday it should have been to them Tues. or Wed. at latest. It’s still not to them. So long story short, at this point the package is lost in the mail. No one knows where it is and my poor first time customer is anxiously awaiting it. This does not make me look good to a new customer.

Sometimes I wish things could just be easier, even once in a while. I’m so tired of battling. Battling for answers, for Dr.’s, for meds. If something would go right even once in a while it would be nice. That reminds me, I now have to try and get through to my Internists office. Wish me luck, that’s always a crap shoot.

Yep like yesterday two times, no answer today. If I a leave message they never return my call. I need to know if I need to stop a med before my scopes and how long before. Fat chance I’ll get an answer.

At least we have sun today after getting 50 cm of snow last week and  temperatures that were at -50 c (-58 f).

*Update: Something went right. Not only did I get through to the Internists office on the third try but, and this never happens, they called me back in 15 mins. with an answer. The Dr. just happened to be walking by the secretaries desk just after I called so she asked him. I don’t really have to stop the med at all which is bonus, but I will stop it on the prep day because it does the opposite of what the prep does, so it just doesn’t make sense to me not too. 

Sunny days & Less winter,

CrankyPants