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

 

 

 

 

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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

 

I Forgot..

Does anyone else struggle with a bad memory? Holy crap on a cracker mine is terrible. I’m impressed I even remembered what I wanted to blog about.

Not only do I have a bad memory but..

I have so much trouble finding my words when I’m talking. Ever since I was on Methotrexate. (No longer on it).

When I was on Methotrexate, it was even worse. I couldn’t form sentences. Especially the night of and the day after I did my injection. I had a lot of side effects on Mtx that forced me to come off of it, but I’m left with this one side effect.

I know what word I want to say but I can’t get it from my head out my mouth. It’s so frustrating. Sometimes I worry what kind of damage these meds do to our brains. I truly hope they don’t cause things like dementia. With my memory so bad, and struggling with words, it really worries me.

I think that’s all I had to blog about today? 😉

Rainbows & Butterflies,

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

Rheumatoid Awareness Day

Rheumatoid Disease

I thought I’d blog a bit about Rheumatoid disease in light of this awareness day. In part, this is in memory of my Grandmother who suffered horribly from it and died a long slow painful death.

Rheumatoid Arthritis/Disease is not just arthritis. It is an autoimmune disease that can and will attack any part of your body at any given time. Joints in the form of degenerative arthritis are a part of what this disease attacks.

  • RA doesn’t just strike old people. It can strike at any age.
  • Those living with Rheumatoid are at higher risk for heart and lung disease, cancers, organ failure, diabetes. And much more.
  • The side effects of the medications used to treat this and all autoimmune diseases are often just as bad as the disease itself. One of the treatments is low dose chemo therapy.
  • RA is life threatening and does kill
  • More often then not when you have one autoimmune disease there will be others overlapping.
  • I have sero negative RA. That means it doesn’t show up in my blood work.
  • I also have overlapping autoimmune diseases. Lupus, raynauds, and awaiting testing this month for crohns/colitis and I have osteoarthritis
  • RA can run in families.
  • RA causes extreme fatigue that no amount of sleep can fix
  • RA causes pain that would put a healthy person in bed and leave them there, or in the hospital but we go on with life everyday with this pain
  • RA is an invisible disease. We often hear, “You don’t look sick.” We are sick as hell, our own immune system is attacking us and trying to kill us. That’s exhausting. We just get good at hiding it so we don’t have to hear uneducated comments and maybe so we can feel a bit normal
  • RA is progressive. We won’t get better. We will progressively get worse
  • Meds that are helping can at any given time stop working
  • RA is unpredictable as are the side effects of the medications for it. We can be holding our own one day and fighting for our lives the next
  • RA is lonely disease often leaving us isolated at home. It’s not that we don’t want to do what everyone else can, it’s that we are unable
  • We don’t ask for pity. In fact no thank you. We just want people to show some empathy and compassion. When we have to say no, don’t give up on us keep asking or find a way to include us on our terms
  • RA causes chronic pain. We are always in pain. levels can change from bad to worse but there is never a day without pain

Nan, when you were alive I watched you suffer so much my heart went out to you and there was some relief when you passed away because I knew you weren’t suffering anymore. Now I understand just how much pain you were in, because I’m living it. You were a stronger lady Nan then I even realized back then. I miss you today.

If you live with RA I’d love to hear your input and experiences with it. The more we talk about it, the better.

RA Warrior & Better Days,

CrankyPants

A Better Day

Today was a way better then yesterday. I took my new med and only half a dose. If it works as well as I think it did today. I will get some of my life back. It also seems to be slowing down the frequency I deal with without a bladder. It’s making me thirsty and allowing me to drink fluids without having to run to the washroom.

If it is doing this, holy cow this would be a dream med for me.

I’m cautiously hopeful.

I was able to go into town and get everything done I needed to today with my Hubby’s help. I ended up with a gut ache but I was able to get out of the house and that is good. We were even able to go out for dinner later in the evening.

It’s a brand new medication on the market so docs and Pharmacists don’t know a lot about it. I guess I’m sort of a guinea pig again. I sure hope I don’t grow a second head or something.

If it does work this well I could see it being life changing for those with crohns/colitis/ibd.

I’ll keep you posted.

I made another change this morning. I didn’t have decaf coffee. I wanted to see if it was making things worse. Tomorrow I will have decaff coffee again and see if there’s any difference.

I love the days that give me some hope but, at the same time I’ve hoped so many times before and they were dashed so that’s why I combine cautious and hopeful in the same sentence.

How was your day?

Good days & Breaking free,

CrankyPants

Make me more Dizzy Thanks

So after the whole, “I need a different med mess” yesterday between the pharmacy and the Dr.’s things have yet again changed.

I get a call back from the pharmacy today from the first Pharmacist I’d talked too. She called to tell me that my GP had got back to her and sent in a new prescription. It took me a minute to process that after being told yesterday no change because we don’t have a diagnosis yet.

In a sense this is good news..

The good part is it’s a pill form, so no more having to drink powder. Yay. I don’t have to work out taking it around my other meds. Believe me that’s been complicated. Yay! And it’s another option yay! With an extra script on file, it saves me another trip to the Dr.’s. Always good!

The bad part is, even after my benefits cover 80% of it, I still have to pay $33 out of pocket. When you’re on lots of different meds that you’re paying 20% for out of pocket,that adds up. It seems the only meds that help me are the most expensive ones. I’m not even a high maintenance person but when it comes to my medical needs, it seem I’m expensive.

Pharmaceutical companies sure make a mint off poor people. It’s sad really.

Thankfully I don’t have to pay anything for my Enbrel because that would be $1800/month. Who the hell can afford that?! My insurance covers 80% of a generic form of Enbrel. The Enbrel Co. itself is covering the rest and giving me the real Enbrel. If I had to pay 20% for that, it would cost me over $800 a month.

I feel bad for those who really need the med and don’t get coverage. It’s got to be disheartening.

So that’s my update for today. I swear I have my own pharmacy here of meds that I’v had to come off of. It’s a shame they couldn’t go to someone who couldn’t afford them. I haven’t been able to dispose of them yet because it just feels like such a waste. It will feel like a bit less of a waste (At least in my mind) to hand them into the pharmacy when they’ve expired.

Hope everyone is having a light pain day today.

Sunny days & Good views,

CrankyPants