I’m Livid…

 

Sept. 28/2018

So I’ve been waiting for a GI appointment for five months now. I was told five months ago that a referral had been sent.

I worked up the courage yesterday to call the GI’s office. They called me back this morning and told me that a referral had never been sent. All this time I’ve been waiting for a call about an appointment.

The specialist that did this has done this before. It’s not the first damn time. Not only that this is the same specialist that took me in a room shut the door and fondled me.

It’s why I asked for a referral to see a GI rather than have to go back to him again. Not that he ever told me I was supposed to follow up. I heard that from one of my specialists out of town.

The very first time I ever saw him, I thought he was great. He was the first one to diagnose me. After that, things went downhill. Four hour wait times past my appointment to see him, disappearing from the room in the middle of an appointment, treating me really bad just before I had my scopes done by him. Mr. CrankyPants was witness to that one. I had my scopes done after the incident as I hadn’t realized what happened wasn’t just an exam. It’s the scope situation and how bad he treated me that gave me the epiphany. You don’t always realize in the moment what’s happening. Call it freezing or shock. It’s hard to put into words. Your brain can’t wrap around the reality of what’s happening. Having been a sexual abuse survivor, my brain just couldn’t cope with it and when it was ready it hit hard.

Not returning phone messages. Or his staff didn’t answer at all. I had been in process of debating whether to report him for the fondling thing. The reason it’s been a tough decision is because it’s not likely much will be done and I’ll be the one going through hell after reporting it. If it does go anywhere, there could be a hearing. We plan to move out of province and if there’s a hearing I’d have to come back for it. The process can take up to a year.They would pay. You all know how hard travel is, not to mention the stress of a hearing. Even with a hearing, if they believe me there’s not much they will do. They’ll watch him but let him keep practicing.

After this and finding out he’s the reason my neighbour died. I’ve decided to report him. Maybe a mark on his record will be enough to stop him from doing it to someone else. Maybe there’s others like me who are too scared to report or have reported.

Really nice how the bad guy’s off the hook whilst their victims suffer basically for life. I already had a fear of Dr.’s that was pretty extreme for reasons I just can’t talk about right now.

Now this Dr. has made things all the worse.

I’m so very tired of fighting with our medical system. They are supposed to take care of us and have our best interests at heart. Sadly it’s very rarely the case anymore.

I’m weary.

Sometimes I feel like saying to hell with it all in regards to my lack of health and just let nature take it’s course. It seems the meds and the medical system are no better than the diseases.

Sorry guys, I’m just so livid today. They’ve pushed me too far.

To end on a positive note, the GI’s office was great. They very obviously dislike the doc that caused all this. They told me exactly what to do to get a referral quickly. I did that. They said they’ll wait for it and get me in asap and they apologized for the other Docs negligence. That was so welcomed in the moment.

I won’t say I didn’t cry with frustration. And I rarely cry.

What would you guys do re reporting or not? Would you get a Lawyer involved?

Rainbows & Sunshine,

CrankyPants

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

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. ๐Ÿ˜‰

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.

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.ย  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. ๐Ÿ˜‰

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 joinย Here.ย 

How has everyone else been doing?

Sunshine & Spring,

CrankyPants

 

 

 

I Forgot..

Does anyone else struggle with a bad memory? Holy crap on a cracker mine is terrible. I’m impressed I even remembered what I wanted to blog about.

Not only do I have a bad memory but..

I have so much trouble finding my words when I’m talking. Ever since I was on Methotrexate. (No longer on it).

When I was on Methotrexate, it was even worse. I couldn’t form sentences. Especially the night of and the day after I did my injection. I had a lot of side effects on Mtx that forced me to come off of it, but I’m left with this one side effect.

I know what word I want to say but I can’t get it from my head out my mouth. It’s so frustrating. Sometimes I worry what kind of damage these meds do to our brains. I truly hope they don’t cause things like dementia. With my memory so bad, and struggling with words, it really worries me.

I think that’s all I had to blog about today? ๐Ÿ˜‰

Rainbows & Butterflies,

CrankyPants