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.

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

Finally Catching up With You…

I’m finding my way back to posting. Life has been so busy. Mr. CrankyPants and I went away last weekend in part for a small getaway, and in part for a Rheumie appointment that’s a 5 hour drive away.

We were so looking forward to having the getaway as we hadn’t had one in many years. While there was some good about it. It mostly turned into a nightmare. I came back way more exhausted then I left.

We arrived at our hotel at the time they said our room would be ready. It was not ready. An hour later, it was still not ready and my stomach wasn’t going to wait much longer. They didn’t even tell us how long it would be. We arrived at the same time as a wedding party was coming back from a wedding. It was chaos. For me sensory overload. I asked the front desk how much longer until our room was ready, and told them we’d been waiting an hour already. They checked and said it’s not ready yet so they’d upgrade us to a Penthouse room. Good right?!

Wrong!

First, for a Penthouse room there were really zero extras except for a beday and a soaker tub. Yay. That was fun. Second there were problems with the water and the pipes so the water was just spitting out of the shower. I actually got burned in the face with hot water because of it. Then, we ended up right across the hall from the bride and groom who kept coming and going from their room all night. The noise from their door opening and closing kept me awake all night.

We called down in the morning and told the front desk about the water problem. We had a “pipe guy” come up to our room and check. It was something that couldn’t be fixed right away. They said they’d check the other rooms on the floor and did. They said it was only our room. So they had to move us.

Now I’m exhausted and we had plans to see the massive mall for the day. So they told us to pack our stuff up and they would move us to another room for when we got back.

The mall was amazing but I was so so tired.

We got back 4 hours later and they had just moved our stuff. They moved our stuff to a down graded room. What?! It isn’t that I’m a spoiled brat, it was the principle of it for me.

Mr. CrankyPants had to get to a reptile show. I needed to nap but instead I went down to the front desk to find out why we got down graded with all the trouble we’d had. I had involuntary tears streaming down my face at this point I was so tired. I think all I needed them to say was sorry, how can we make this better for you. Instead she said this is the size room you originally booked.  I said I know but that’s not the point.

I can’t remember the full conversation from there, but I ended up going back up to our down graded room to wait for a call from them. Oh and I was told the only other penthouse room was occupied. Not true. They just hadn’t cleaned it yet.

So I get a call back and I’m told they begged house keeping to stop everything they were doing and get the penthouse room cleaned up for us. Okay great, but it was going to be another two hour wait. There went my only time to get some rest.

Two hours later Mr. Crankypants came back from the reptile expo and we weren’t moved yet but they came shortly after.

So up to the other penthouse we went with the help of a staff member. So at this point we went from penthouse, to suite and back up to penthouse.

Staff dude said he was going to check that everything was working. He got talking and forgot.

Now it’s evening and we’re both hungry and tired. We head to the restaurant in the hotel. It was mostly good and food that I could eat. For that I’m thankful. However…Mr. CrankyPants got served his beer in a dirty glass. He wasn’t going to say anything but decided to kindly let them know. They gave him an extra free beer. That was nice.

We met some nice people in the restaurant who saw my crutches when I was in the mall that day and he asked about them. We got talking a bit and found out both had cancer battles they were dealing with. It was a nice few moments to chat about autoimmune diseases and connect because of them.

Then back up to our room for the evening. At this point all I wanted to do was soak in the tub and veg for the night. I did soak in the tub but that’s when I discovered that we had the same problem in this room as the other penthouse room. The water wasn’t working properly. It wasn’t just one room on the floor.

After my bath I went to make a cup of tea with some tap water. The tap water was brown. AAARRRRGGG!

I called down to the front desk and said I don’t need anything from them, just that I wanted to let them know that the water wasn’t working in this room either and that we have brown water coming from the sink. I told them I was too tired to have anything done about it that night. They said that they were so sorry and could they make it better. I said we can deal with it in the am.

There’s more…

Even though we were 22 floors up, the traffic on the side of the building we were on now, was so loud that even with ear plugs and a pillow over my head, it kept me awake all night long. Now I’m even more exhausted and I have my Rheumie appointment to go to.

So, we talked to the front desk in the am, and told them again about the water. It was obvious the message hadn’t been passed to them. They finally said they better lock those two rooms out until they figure out what’s going on with the pipes.

Out of it, we got a tiny bit off the price of our stay, free parking for the two nights, and a free buffet breakfast each for our last morning there. I do love a good buffet breakfast. I take enough to have lunch out of it too. 😉

Now it’s off to the Rheumie appointment.

They were running quite a bit behind and we still had a 5 hour trip home after.

Long story short with the Rheumie, I’m being taken off Enbrel as it’s not working enough for me. I’m going to be starting on Humira. The doc actually wanted to start me on Rituxan infusions but, because I have sero negative Rheumatoid which means the RF factor doesn’t show up in my blood work, I won’t get coverage for the infusions. Sad because the infusions would help my kidneys that are still leaking protein. Talk about medical discrimination with the Ins. Co.’s.

I swear the most relaxing parts of our trip were the drive there and the drive back.

Before the trip I spent three days making candles for a show I had yesterday. And I worked on getting ready for the trip.

When we got back, I spent my week still getting ready for the show, and dealing with the whole Humira process. The days have been such a blur with the busyness since I got back.

So the show yesterday was a massive one. The biggest one I’ve been too and you know what? I sold two small candles and a couple of bottles of CBD all day. That’s it. It was such a horrible let down after all the work I put in to prepare for it. I was also told that most people sell out early so I had high expectations. It was a Craft and Critter show. It seems most people were there for the livestock not the crafts. That’s it for me with shows. I can make more just selling wholesale like I always do until we move. I totally thought that at least the CBD would sell out there.

The one highlight of the show was that I got to hold and feed a 7 month old baby wallaby. That was wonderful and a once in a lifetime experience.

Now today (Sunday) I’m recouping. Tomorrow I look forward to the start of a less busy more normal week. I hope.

Sorry this is so long. There was lots of catching up to do.

Don’t forget about my FB autoimmune disease support group. I’d love to have you join Here. 

How has everyone else been doing?

Sunshine & Spring,

CrankyPants

 

 

 

Test post

I did whole long post recently and when I hit publish, it didn’t publish and it disappeared. So this is just a test post to see if the same thing happens again.

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

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