What Would You Want to Teach Doctors?

I wish I’d experienced one Dr. who I really felt cared about me as a human being, not just another medical case.

I wish they’d explain things to us like what to expect with meds and the disease. I’ve just had a bunch of diagnosis and meds dumped on me and then sent packing with not even a pamphlet. That’s after three years of trying to get docs to believe me and find answers.

Had I not done my own research ahead of time (because I knew before them what I had) I would have been so blind sided and terrified with the illness and side effects of the meds.

I actually liked when my Internist and his PA Googled in front of me. I liked that they were actually fighting to find answers for me, and willing to learn.

Being treated as a person and not just a disease out of a medical book would be wonderful. Bedside manner is huge since we’re already fragile.

Being able to get results over the phone would be of huge help and save us on so many trips to the Dr’s. Even Skype appointments where it’s possible need to be an option. Doctors don’t really think about how hard it is for us being this sick to get to them.

Our time needs to be respected. I’ve had to wait at a couple of appointments for 4 hours. That’s just not right. We need more specialists where we live. There are hardly any. For most we have to make a 10 hour round trip drive. When on certain meds, that means every three months. If we have an emergency situation, there is nowhere to turn since the medical world is pretty much clueless about autoimmune disease.

That’s another thing. The medical world needs to be more educated on the these illness and the meds for them. It’s stunning and scary how little they know. How do we feel safe in their care if we know more then they do?

I wish doctors would really listen to us and work with us on what’s best for us, not treat us all as cookie cutter patients. These diseases present differently for everyone. So we need different treatments.

Doctors, don’t brush us off. We are not hypochondriacs we are in pain. We are not drug seeking. In fact if we could we’d run far away from meds. They are as scary as these diseases.

Get to know us so when we come to see you, we don’t have to start from the beginning every time. It’s overwhelming.

Care. Just care or get out of the job. We are not dollar signs. We are suffering people.

What would you want to teach the medical world?

Summer Days & Rainbows,

CrankyPants

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Please Slow Down Life…

I have seriously had no time to blog. Life is going at the speed of umm…life.

In short I still haven’t started Humira. It’s such a process with the Ins Co. and the Co pay Co. to get on it. I’m now approved, fully covered and it will be ready for me (I hope) to pick up after the long weekend.

I won’t start until next weekend when Mr. CrankyPants is home. I don’t like to be alone when I start a new med.

We have been working hard to get our house ready to put on the market. We wanted it on by now but, we’re getting new counter tops put in and there was a two week delay do to a mistake the store made. I really hope they go in next week.

While we’ve been waiting for that, I’ve been doing some more painting. We bought new sinks and taps and cupboard door knobs.

We have some trim to put up in the bedroom I just painted, gardens to plant, a house to purge of as much as we can before the town clean up next weekend.

And the list goes on.

Three days ago you probably wouldn’t be surprised to hear I went into a bad flare. My neck is in so much pain I can hardly hold my head up. My whole back is in spasms. One day I let myself rest more then not but only because I couldn’t hold my head up without intense pain.

I’m still in a lot of pain but aside from a nap, I don’t have time to stop. I truly wish I did.

This coming week I have a docs, appointment, a dog to take to the vet and I’m sure more. It’s so hard to drive when I can’t turn my head but I’m the only one who can do this stuff. Mr. CrankyPants is in busy season at work, so he’s  working long hours. That means I have very little help at home and boy could I use it.

I have no family up here and even if I did, they wouldn’t be in my life. So…I have to keep going as though I’m well when I’m not. Fatigue is always a battle as well and I think I might be getting a cold.

Aside from all the above there’s also been some personal hard ass battles we’ve been fighting. I’ll just leave that there other then to say one of them involves a neighbour again a different one then the one next door. It’s so stupid what people will fight over.

I’m so tired. I want to know what peace feels like again. I just want to move to a place where home feels like home and I can be at peace when I’m home. Where I could actually sleep in my own bedroom again.

I will end by saying we’ve been enjoying a wonderful long weekend. The weather is perfect, Mr. CrankyPants actually got the entire long weekend off and as a result we are able to get a lot of things done. We’ve also enjoyed dinner out last night.

Mr. CrankyPants is in his happy place because he’s gotten to do some gardening. He’s a summer man through and through. And we’ve taken a nice walk in our local conservation area. So they may be small things but in a tough situation up here they are huge.

I hope you all have been able to enjoy your weekend to some degree.

P.S. don’t forget about my FB autoimmune disease support group. I’d love to see you HERE

Summer Days & Sunshine,

CrankyPants

Lupus/Autoimmune Disease Awareness Month

Fighting vicious invisible and painful autoimmune diseases are very hard and a daily struggle with pain, fatigue, & unpredictability. They are isolating and make it so hard to make plans as we never know when we will be slammed and with what. Just because you can’t see the illness or disability doesn’t mean it’s not there. For the most part we try and hide it. I can guess if you looked in our eyes, you’d see the pain.

Autoimmune Disease
Living with Autoimmune Disease/Invisible Illness

Rainbows & Unicorns,

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

Gibbering

There hasn’t been a huge amount new to blog about lately. No real changes going on except maybe my stomach and GI issues are getting a bit worse again.

I’ve been painting areas of our home getting it ready to put up for sale. I’ve been working on my candle making because I sold a bunch, and my cbd business has kind of taken off, so things have been busy.

Oh and also my autoimmune disease fb support group has taken off. I went from 16 people that I added to over 60 people in 2 days. I’ve had to add 2 moderators already. In one way it’s sad that so many are sick and feeling alone, in another way, it’s wonderful to find support, comfort and understanding in others. If you’re interested in the group the link is on my side bar or HERE.

I had a good friend who lost her job suddenly yesterday come over. She came straight from that job pretty upset. The same friend came over tonight and we did a really fun thing I’ve never done before. My friend is a photographer and I’m a candle maker. She brought over her photography equipment and lighting and she took stock photo pics of my candle making process. It was so much fun to both hang out with her and combine our two passions. We can also talk for hours with no idea of time. I’m grateful for good friends who are so supportive in working around my illness.

This month I have an appointment with my Rheumatologist. It’s quite likely the last one before we move. At least I hope so anyway. Mr. CrankyPants and I have not had a get away in years so, we have decided to make this long trip a getaway. Rather then driving 5 hours to the docs, seeing the doc then driving the 5 hours back like we usually do. We are going to leave on the Sat., stay in a hotel Sat. and Sunday. Hang out in the area both going to a massive mall and a reptile expo on Sunday, then go to my appointment on Monday and head home.  Yes we love reptiles. We have a wonderful 7 foot boa. She’s our gentle giant.

I’m looking forward to the getaway. I need it so badly. I hope to also get somewhere with my Rheumie in snagging a couple of specialist referrals in my area. I need to see a couple and I have no support from my GP or my Internist it seems anymore. I suspect my meds may be changed too as Enbrel isn’t making much of a difference yet anyway. Who knows what will go down. I can only hope for the best.

On last side note. We are still getting a crazy amount of snow up here. Where the Sam hell is spring?! The amount of snow we’ve had since Feb. has broken a 31 year record. I believe we’ve had over 10 feet of it. Please snow stop! I’m begging you! It’s April. Did you hear me? APRIL! SPRING! Spring doesn’t = snow. Now that I’ve cleared that up, I expect to see our lawn again soon.

How are you all doing?

No more snow & Green grass sightings,

CrankyPants

 

Craziness

Hey everyone. It’s been craziness around here. I’ve been busy painting parts of our house to get it ready to put up for sale, and shoveling a shit load of snow. Holy snow batman we’re getting up here. It just won’t let up.

I feel my heart sink every day I get up and see it still snowing. It leaves me trapped at home. I panic driving the winter roads up here since they are not taken care of. Also it’s a long unpredictable drive with a urostomy and gi issues. Sigh. Can’t wait to move.

I’ve been in a significant amount of pain with all the painting and shoveling but I have no choice, it has to get done and Mr. CrankyPants works so I have to do it.

How do you all cope with life when you’re sick? It’s so hard to keep up but it seems there’s little choice. I do get a nap in every day. Whether I sleep or not is iffy. It seems to be when everyone wants to chat, the phone rings, the dog barks..geeze. I at least lay down. The pain killers make me sleepy and dizzy. The fatigue from the illness gets me too at times.

I wanted to remind everyone that I have a Facebook Autoimmune support group going. It’s hard to grow when it’s a closed group but I want to keep it as private as possible so that people feel free to talk about things they would otherwise not. We have a great discussion going about how these diseases affect our relationships today. Drop by. I’d love to see you there. Here is the LINK. 

The link is also on the sidebar of this blog.

No snow & Sunshine,

CrankyPants

Reporting Part 2

If you read yesterday’s post Here you will know I decided to report to the hospital that I woke up during a very painful procedure to me a month ago. I warned the doc I would if he didn’t put me right out and he refused. I woke up in agony.

I got a call back this morning bright and early. It was nice that they got back to me so quickly. They took my report and passed it to the proper department.

That department has already called me as well. I just got off the phone with them in fact. So this is where they’re starting. They are going to find out if there was a disconnect in information given to me. Aka the nurses telling me all I had to do was ask to be put out, and they would put me out when that was clearly not the case.

We are not yet going to make this about the Dr. Only because he is the only specialist I have the option of seeing up here in his field and if I need to see him again it would be awfully awkward if he’s made aware that I reported him.

Having said that we’re not ruling that out yet because he also treated me poorly. We’re just looking into some other things first. I told the hospital that I thought there would be communication between the nurse I’d talked to about being knocked out and the Dr. There was none.

They just want to see first if I was given some false information. So they are investigating.  I have asked them to keep me in the loop to which they agreed. I have offered to educate them on people with ostomies because I have one that needed to be watched during the procedure and no one watched or looked after it,even after I made it clear it needed to be watched. No one knew how to.

So first,they’re looking into whether there needs to be some policy changes within the hospital. More communication, proper communication, and an option put in place for people like myself who don’t sedate well or at all if one doesn’t exist. After that’s all looked into then we’ll decide where to go with the Dr. side of things.

Health Services was very kind, compassionate and seemed to want to help and make things better. If that’s true then I feel like I did the right thing. Maybe, just maybe it will bring about some positive changes in the hospital for others as well.

Rainbows & Sunshine,

CrankyPants

Update on the PPI Med

I called the pharmacy yesterday to ask about the ppi med. I’m on. I told them about the pain it was causing me and how it’s also causing flu like symptoms.

She told me in no uncertain terms to get off the med. It shouldn’t be doing that. I can’t tell you how relieved I was. Well I can, but I’m sure you already know.

So I had some other ppi’s here from when my Internist had me on them to protect my stomach from anti-inflamatories which I can no longer take.

I asked the pharmacist about taking them. I told her they didn’t make me sick last I was on them. She said they’re in the same family, take them instead. So I’m using up the old script.

The jury’s out on how I’m doing with them. When I took the pill this morning I felt okay. Now I’m hurting. I don’t know if that’s the med or the ulcers. I’m at least not running to the washroom so that’s something.

It’s always a guessing game with autoimmune disease. Is the illness making me sick or the meds, or both?! It’s such a mind game. A roller coaster ride I’d really like to get off.

I wish the medications didn’t cause issues as serious as the diseases. Gotta wonder what pharma companies are up too.

Anyway, I hope that you’re all having a low pain day.

Don’t forget I have a FB support group for those suffering with autoimmune disease! I’d love to see you there!  https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

Stop the snow & Bring back the Sun,

CrankyPants

A Question or Two

I just have one question or two. Does anyone have acid reflux and stomach ulcers. If so how do they feel for you? Are you on PPI’s? If so do they help? All this is new to me. I was in a fair amount of stomach pain before I found out I had ulcers but now that I am on a PPI for them the pain is worse. It’s sharp and constant.

What side effects if any have you had from PPI’s? I feel like the majority of meds I’m on make things worse either by causing other serious complications or making the complications I already have worse.

I’m pretty much out of options for medical help up here. So if there’s anything you can suggest or share with me I’d be grateful.

This morning I was so sick. I had the runs and terrible gut pain. I’m not sure if that was the PPI’s or the IBD which the dumb docs are calling IBS.

That just might have been more then two questions. Shoot me. I don’t math. 😉

Sigh. I’m sick and tired of being sick and tired.

Note: I want to welcome you and anyone you think would be interested to my new FB autoimmune disease support group.  https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

Warm Days & Sunny Skies,

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