Keeping Up

Does anyone else feel like you can’t keep up with the normal pace of life? The normal pace of healthy people, but you have no choice. You have to keep up? If you don’t get things done, who will?

And the guilt. So much guilt for struggling to keep up, and needing so much sleep, yet still being tired. All. The. Time.

I wish life could slow down some.

What do you do to cope?

Rainbows & Lightening Storms,

CrankyPants

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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

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

 

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

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

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

Sick

Oh my goodness I was so sick this morning I was scared. If it hadn’t of improved some when it did, I was debating whether or not I should go to the hospital.

I don’t know if the meds stopped working, or if it’s the nature of this potential disease (crohns or colitis) to override the meds at times. Hubby is picking up the new meds for me on his way home from work tonight, I sure hope that they work better and faster or I could end up at the hospital.

I have so much I have to do tomorrow. I hope I’m not this sick tomorrow.

I’m weary.

That’s all I’ve got today.

Sunshine & Warmer days,

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