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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Yet Another Thing…

Hello blog world. How goes your battle? We truly are warriors aren’t we?! I admire everyone waging war with autoimmune diseases. They’re vicious, relentless, ambushing, painful, annoying diseases that too few understand including the medical world.

Anyone else in on hating the autoimmune diseases club?!

I have a new development as of last week which is now forcing me to see yet another specialist. So presently, I’m booked in or being booked in with 4 different specialists. Yes that sucks but, what sucks worse is three of them are a 10 hour round trip drive away. You heard that right. That’s not only impossible for me, but since Mr. CrankyPants has to take off work every time to drive me, it’s impossible for him too.

I’m presently trying to get out of one appointment that I believe is completely unnecessary. If I thought for any reason at all that it was necessary I wouldn’t be trying to get out of it. Right now as far as I know, I’ve managed to talk them into a teleconference appointment in my own city instead since they’re not letting me away with cancelling. That’s the Nephrologist.

I’m in process of trying to get the other two out of town appointments covered in one day since they’re both in the same building. If I can do that, it means only one trip rather then three.

I know you’re still wondering what the latest development is. I guess I shouldn’t keep you waiting any longer should I?! Well just for a min.

The appointment that is in town already hasn’t been made yet but that’s with the GI regarding my gut. I’ve heard she’s amazing and the kind of Dr. everyone wishes they had so I asked to see her and I’m grateful for the referral to her. I don’t know how long the wait will be.

The other two are the Rheumy and drum roll please…I’m now being booked to see a neurologist.

I have developed a tremor. The Rheumy is concerned and wants me to see the neuro.

I’m grateful to be referred to the neuro as I have other neuro stuff going on aside from this new tremor but, my heart sank when I found out that yet again it was going to be out of town. Geeze we need specialists up here.

If I was doing things the Dr.’s way, I would be making three 10 hour round trip drives in two months to see these docs. Who can afford that financially or health wise?! It’s ridiculous. I hate our medical system and it’s making me a CrankyPants.

Do they not get that we are sick people?! I’m so weary.

I don’t know if I mentioned prior that I’m looking into reporting a Dr. here for a serious situation? The College of Physicians think I need to. If I have already, just an update. I haven’t decided yet whether I want put myself through the stress of it only for the College of Physicians to do very little to nothing anyway. Sad that Dr.’s are so protected but patients aren’t.

Anyway, I’m worried about this new tremor thing too. I hope that I can get some answers. I hope even more that it’s nothing to worry about. While I’m there, I’ll take the opportunity to tell the Dr. about my really bad memory and my struggle to get words out and form sentences that started when I was on methotrexate. I’d really like to get an MRI and maybe a brain scan so I know if anything worrisome is going on.

Or if I have a brain at all. 😉

One more thing. I grabbed the opportunity to ask the Rheumie while I had her on the phone, for an ultrasound on my foot since it’s become so painful I can’t walk on it. Rather my big toe joints. She complied and I’m happy about that because I can’t get my GP to do anything. The bummer is, it’s a 6 month wait for an ultrasound. Grrr…I’ll get myself on the cancellation list I guess.

How are you all doing in your battles? I’d love to hear from you.

Hot Days & Rain Coming,

CrankyPants

P.S. Sorry I’m so Cranky today. I’m overwhelmed and just wish all this would go away.

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

Fatigue…

Hot damn the fatigue slammed me this past week. I always have some level of it but, this was way beyond that level. It was hard to function and hard to think but I had to anyway. I find when it’s this bad I get overwhelmed really easily. Anyone else? I usually have a number of people messaging or texting me throughout my days, and the phone going off all the time was driving me nuts.

It’s even harder when it’s happening while I’m trying to sleep. And with all that’s going on, I can’t really unplug.

I think and HOPE it’s lifted a little bit as of tonight but wow it’s debilitating.

I’m guessing I crashed from the insane busyness of the past couple of weeks but there wasn’t a choice.

It’s so hard having to function every day as though I’m not sick, when I’m sick.

When people get the flu it wipes them out and they go to bed, rest and recover.

Not only do we not get to go to bed, or rest, we never recover. It only gets worse and then we have to live as though we’re fine.

I don’t know about you guys, but when things get crazy busy for me, I usually get hit after the fact with a flare. I always have pain but I get hit with debilitating pain and fatigue.

Sometimes it’s so after the fact that I can’t even link it to any one thing.

There’s so much guilt attached to it too, but I’m learning to self talk myself out of that.

And this is part of why I’m a CrankyPants.

That’s all I have the energy to blog tonight. Stay tuned for more about a serious subject regarding the possibility of reporting a Dr.

How are all of you doing?

Rainbows & Sunshine,

CrankyPants

 

Time…

Time. What’s that?! If anyone knows, let me know.

Things have been so incredibly busy I think that I’m in survival mode. We have spent the last few months tearing first our bathrooms and kitchen apart to have new counter tops installed. We finished that got it all put back together and thought we could breath. You see, we’ve been getting our house ready to sell.

Once the counter tops where in and I had done a ton of painting in other areas of our house, we called the real estate agent to come in. The night before she was do to come, I was doing some “touch up” painting in one of our bedrooms. Well, that led to the paint totally stripping off the wall four layers down. So the next morning a nice neighbour came over and helped me finish stripping and scraping the wall. Then patching. The goal was to have it done in time for the agents visit. It wasn’t. I was a mess when she came, the room was mess, and I had to leave my friend to continue my work for me and have the meeting with the agent.

So we talked.

Then the next day I painted two coats on that damn wall, cleaned everything up and put the room back together.

We had been tossing back and forth the idea of laying new flooring in our kitchen since it had a lot of broken tiles. Our real estate agent agreed so here we went again.

We tore up all the tiling and sub-flooring in our huge kitchen in one day. The next day Mr. CrankyPants laid all the new flooring while I painted all the trim. (The trim as was didn’t match the new flooring). And we put back together the whole kitchen again. And we cleaned and purged and cleaned.

Can you say tired and in awful pain?! Ugh!

You’d think we could rest after that but no.

Now it was time to list the house. And list it we have.

So…

We are now having to keep the house looking perfect and staged at all times since we’ve been warned that real estate agents can show up at any given time without notice to show our house. There is no rest for the weary. And I’m weary.

Tomorrow, we have an open house from 2-4 and if that’s not enough then there’s a showing from 6:30-7:30. Mr. CrankyPants’ only day off this week.

We have no place to go because we are in the middle of heat wave and we have to take our dog with us. We can’t leave him in the truck. So basically we sit in the truck with the air on for all that time. It’s crazy.

Getting out of where we live is good. Moving is so stressful and not good for autoimmune disease. I’m worried when all this is said and done, that I’m going to crash. I have no choice but to do all this as we have no help. No family where we live.

We’ve had one family come through and they are interested. I hope there’s more interest come tomorrow! A bidding war would be great!

After we sell though we are on to the next stressful part. Finding a new home out of province, and Mr. CrankyPants will have to find a job. Then the move.

This is why I’ve had so little time to blog. You can always follow my FB autoimmune disease support group. I’d love to have you join! Just click on the blue.

Hot Days & Big Changes,

CrankyPants

 

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

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