Dr. Appointment Overload..

I’m presently scheduled or waiting to be scheduled to see 6 different specialists. Is it just me or is that insane?!

That’s what autoimmune diseases do. I hate it. I’m a CrankyPants about it.

Three of those appointments are the 10 hour round trip drive away. So…

Two weeks ago I spent a part of my week trying to work that out. I managed with my Nephrologist to talk her into meeting with me via teleconference in a town near me. Let me tell you that was not easy to do. I don’t think I need this appointment. This is just a follow up from a year ago. I’m doing better in this area then a year ago and ironically off the meds that were supposed to help. Things that make you go Hmmmm.. Anyway the doc won’t let me out of it because she’s expected by the College of Physicians to follow up after a year. Well good for her. That doesn’t suit me. If it’s not truly necessary to be seen, I have better things to do. Anyway, at least I don’t have to do the long drive for it. If I had to I would have just cancelled it.

Two other specialist appointments are this far away too. This was a whole other headache. First I was told one appointment was at a certain date and time. When I called to rearrange it, I found out not only did I not have an appointment at all but I was never referred. That was confusing for both of us since I had just got off the phone with the referring Dr.’s office and was told I was. So this took a number of other calls long distance back and forth to work that out.

Then I had to make a number of calls to try and arrange the appointment on the same day as another appointment in the same building. I found out I was also to have a test done I wasn’t told about. Sigh…

So now I have my Rheumatologist, and Neurologist appointment booked on the same day along with a nerve conduction test for the tremor and other neurological things going on. That includes in the same day the 10 hours of driving. A positive here, I’m getting in with the neuro in less than a month. That’s good.

It’s going to make me bad shit crazy. Or already has.

I’m also still waiting to hear about an appointment from the GI for my gut issues. Who knows when I’ll get that call.

Now, I’m being referred to a urologist as there’s something not normal with my stoma and I’m going to ask the doc about the extreme frequency I’ve had to live with for 20 years. I’ve not been seen by anyone even to check up on my stoma/ostomy in 18 years.

And if that weren’t enough…

My GP is referring me to an ENT. I can’t breath through my nose, never have been able to and no nasal sprays help. It doesn’t let me sleep. He said I have a mild deviated septum and swelling up there so he wants me to see an ENT. At least for once my GP took me seriously. That’s a first and it pleasantly surprised me.

The last two referrals mentioned are a 3-6 month wait. Argh! We are trying to sell our house which has been so frustrating so we may not even be here by then.

See what these autoimmune disease do? They attack everything and make us go to tons of doctors appointments many of which are sup-par docs to put it mildly.

And if we’re not seeing docs we’re getting tests done.

I feel like my whole life is consumed with the illness and the medical everything around it. I need to find some balance but I’m not sure how.

I’m overwhelmed with it all. I’ve been so slammed with diagnosis, complications, tests and appointments that I’ve had no time to process what’s happening with and to me. No time to cry. Just no time. The RA, Osteo and Rheumatoid diagnosis’ are not even a year old for me yet.

On a bit more of a positive note, Humira is helping me with the pain so I’ve been able to work out again. I love working out, getting that back for now anyway is a victory.

I went out to the conservation area this weekend for a walk with Mr. CrankyPants and my dog twice. We got to see two momma and two baby deer. I never tire of seeing wild life in the wild. That made me happy.

Being able to do those things helps but I really struggle to be able to get together with any friends because of my limitations. I just feel like I couldn’t keep up and I’d be more of a burden then anything. I haven’t got that figured out yet.

Right now one of my friends is working so hard at fixing up her daughter’s place alone. I listen to all the work she is doing and wish I could go give her a hand, but it’s not work my body would be able to handle more of. It’s work I just finished a while back doing to our own home and I’m just so done. I want to be there for my friends but how?!

How do you all cope with this stuff? Like I said above, I’ve had no time to figure all this out. How to find balance between the disease and living life.

That’s my reality right now.

Sunshine & Summer Days,

CrankyPants

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Ambushed…

I hope all you Canadians out there like myself have enjoyed a good long weekend.

I was totally enjoying mine and getting some rest until last night.

One min. I was doing okay and the next my entire lower back, and waist ambushed me with unbearable pain. I couldn’t walk. I literally had to crawl including up and down stairs. Even crawling had me involuntarily crying in pain.

I’m still in this kind of pain today and pain killers are not touching it.

I was hoping it was going to be one of those ambushes that passed quickly, but it is not.

I’m debating whether I go to emergency or not. Not that they can ever do much but maybe I could request a cat scan or something to figure out what’s going on.

I know this sounds crazy but I’ve been trapped at home in the house for a week. I needed to get out for a bit and today was my only chance to do so with the help of Mr. CrankyPants since it’s the long weekend. So…

I knew it would hurt bad, but I asked him to take me into town for a bit. I grabbed my crutches and handicapped parking pass and we went.

I forgot concrete floors would make things even harder, and they did.

It was so damn painful. I couldn’t stand up straight even with my SMARTcrutches, and I was moving at a snails pace. But…

I got out.

Looking after our mental health is as important as our physical health. I knew that if I didn’t get out today I’d be worse off, because in this shape, I will be trapped at home all this coming week and I’ve been going squirrely.

We got done only what we needed to. I came home, ate lunch and now I’m in bed.

I’m finding lately too that typing is getting more and more painful. The RA in my fingers, hands and wrists don’t like much that I type. Damn these stupid diseases.

I will fight you to live, and live well.

Part of that fight as frustrating as it is, is to listen to our bodies. Mine is saying don’t move.

Now I need to crawl out of here and check on the dog, then go back to bed. I really hope this passes. I don’t know how I’m going to cope on my own when Mr. CrankyPants goes back to work tomorrow if it doesn’t.

What would you do? Go to Emergency or ride it out?

Less Rain & More Sun,

CrankyPants

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

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