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.

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