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

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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

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

 

 

 

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

 

A Question or Two

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

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

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

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

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

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

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

Warm Days & Sunny Skies,

CrankyPants

A Tiny Add On to Yesterday’s “Results” Post

Reminder: I started a Facebook support group for those living with autoimmune disease. I’d love to have you join if you’re interested. Feel free to invite anyone you think may benefit or be interested. I’d love to see you there!   https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

I forgot to mention that the Dr. said I should consider the FodMap diet to look after my fake diagnosis of IBS (Aka BS). Really?! I was on a candida diet for three years. I took out all carbs, sugar and anything you can think of that wasn’t healthy out. You know where it got me? I got sicker, and I went into starvation mode.

I looked up the FodMap diet and I pretty much don’t eat anything that you’re not supposed to on it now. The only think I’d need to change is going to gluten free bread.

I wish I could wake my Dr. up!

Anyway, hope everyone has a good day. As you can probably tell It’s been a rough haul lately for me.

Sparkly Snow & Sunshine,

CrankyPants

“Results..”

So it’s been a while since I blogged last. I’ve had a hard time processing everything. I’ve since received my biopsy “results.” That’s in quotes since they found nothing so they’re calling it IBS. I call it BS.  This seems to be the way it always goes for me. Something is very wrong, I know in my “knower” there’s more then IBS happening but Docs don’t believe me. I even asked the doc if 8 months of fissures that caused me the worst pain of my life come from IBS? He couldn’t answer me.

I forgot to ask if being on Enbrel might have masked things, since the fissures cleared up when I went on it. They didn’t get to see them. My friend who battles crohns said it could definitely mask things and just because they didn’t find things in the scope or biopsies doesn’t mean they’re not there.

This is how it went before I ended up losing my bladder to IC (aka lupus they didn’t know I had back then).

This is how it went for three years trying to get answers with regards to my joint pain. Nothing showed up in my blood work other then being ANA positive which they decided was a false positive. It wasn’t. Guess what? All along I had RA and Lupus and I knew it. Trying to get docs to believe me was the problem. It wasn’t until Raynauds showed up in front of my Dr. that he finally believed something was very wrong. I had already gone through 2 Rheumies that blew me off and a pain clinic prior to this.Then I was finally offered a referral to the Internist who knew I was really ill as soon as he saw me. He diagnosed me that day and started me on meds that day. Next time I saw him, he changed his mind. And so it went back and forth for a time until I was sent to another Rheumie, who knew something autoimmune was going on but because I didn’t fit her box, she called it mixed connective tissue disease not yet determined. Say what?! In other words, something is wrong but we don’t know what.  Oh and by the way RA is now showing up in my blood work I found out at this appointment. My inflammation markers are up. Add in the doc tells me I have protein in my urine again too. Not as bad as before but my kidneys are being watched closely for lupus nephritis.

Having said that I was also trying to tell the doc I can’t walk on my foot because of my big toe joint pain and locking. He shrugged and said take anti- inflammatories. Ummm..I have strict instructions not to take any since my kidneys are at risk. I’m allowed one Advil a day and that’s pushing it. How does he not know this when I tell him every time I’m in there and he has it in his records. He knows they’re dangerous for my kidneys, not to mention my gut. So even though I’m already on Percocet , he scripts me Tramadol for my foot pain and explains it away as my RA. I know it’s my RA, but what can we do to fix it?! I was hoping to be referred to an orthopedic surgeon, but apparently Tramadol is going to fix things. Not! I told him no cortisone shots but he tried to suggest it anyway.

It gets better (Insert sarcasm). He asked me who scripted me Viberzi for my gut. Again say what? I looked at him and said, “You did.” It’s like he doesn’t know me at all after having been his patient for 6 years. So for now I’m still on Viberzi and left with nowhere else to turn for help even though I know something is wrong.. I also had to ask him about the ulcers they found in my stomach during the scope. He actually asked me if my stomach hurt. *By this point I wonder if I was visibly shaking my head.* Yes it hurts hence the damn tests. So he gave me ppi’s for that. So far they haven’t helped but we’ll see.

I guess as usual I will be waiting until I reach a crisis to actually get answers for what’s wrong with my gut. Sad that the system works this way. I would have asked for a referral to specialists but I know my GP would not have referred me. When I first asked to see the Internist about my joint pain the doc said and I quote, “He won’t be interested in you.” Gee thanks.

So I know unless my GP has something visual he won’t refer me to any specialists.

I told him about my gallbladder pain and he ignored me. Arrghhh. Why can’t I just get a Dr. that listens and wants to actually help? That shouldn’t be too much to ask. We can’t just switch Dr.’s up here or I would.

On a bit of a different note. I have now set up an autoimmune disease support group on FB. It’s s a closed group so there will be complete privacy and freedom to share things we otherwise wouldn’t. If any of you are interested in joining I’ve posted the link below. If you know of anyone you think might be interested or benefit. Feel free to share the link. I’d love to have you join.

https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

You will be asked three questions before approval.

Better Days & Where’s spring,

CrankyPants

 

 

 

Fatigue

CrankyPants is back and apparently writing in third person. This is the kind of silliness that happens when she’s taken her pain killers before bed.

It’s taken me a long time to recover from those two scopes I had recently. Hey look at that. No more third person. Well pat me on the back and hand me a cookie.

Now what was I saying??

Right recovery. I thought I was going to be pretty much back to me the next day. Pffft! That did not happen. It took 4 days for my stomach to stop hurting from the scope. I’m just past two weeks from the tests and I still now have a cough that won’t subside and I still feel the path of the endoscopy. My voice is raspy and annoying. Is there a conspiracy here? Did Mr. CrankyPants ask them to quiet my voice?!

And where they put that damn IV is still tender. I will karate chop anyone who ever tries to put an IV there again. Medical world consider yourself warned. I know my pain can stop a karate chop but, adrenaline can allow one to happen. Know what I’m saying? Good.

I wonder if between the lupus, rheumatoid, and immune suppressants I just won’t recover as quickly as a healthy person would.

Well now to get off the rabbit trail I apparently went down without intention…

I wanted to ask you all about fatigue.

I know the majority of if not all those fighting autoimmune disease experience fatigue. I wonder if it can be different in some ways for us all. What I was wondering is if you battle fatigue, how does is present for you?

For me most of the time it seems to be like a lethargy. Everything feels like it’s an effort or a chore. Mornings are the worst. I wake up between 7-8 am every day, get my breakie and have a decaf coffee. Once I sit down with my coffee, I just can’t get going. It takes me until between 9:30-10:00 to get the energy to take my shower. Some might see that as laziness. I don’t think it is.

After my shower I have a bit of a boost to get everything accomplished I need to. I then nap in the afternoon. (Pain killers I take then make me sleepy).

After my nap I still have no get up and go, but I have to because things have to get done. So I do them. Including a bit of exercise.

If I have a particularly busy day, I seem to get worn out really quickly. Sometimes I shake my head wondering how I could possibly be this worn out when I’m only doing maybe half of what an average healthy person does. It’s frustrating.

There are times where I feel the extreme fatigue where it’s debilitating and very hard to function. It’s hard to explain, but those who have it will know what I mean. No amount of sleep fixes it. It feels as if you haven’t slept in weeks, but for no apparent reason other then our bodies are trying to kill us and that’s kind of exhausting.

Do you guys experience both? Do you experience one more then the other?

And because it seems I’m full of questions tonight, do you feel guilt with it?

Oh the guilt I battle. I don’t work other than my little candle business. Mr. CrankyPants works hard and long hours. I feel like I have no right to feel so draggy when I compare my day to his. I feel useless often too, even though I actually get a fair amount accomplished. It just doesn’t feel like enough. Like I could do if I were healthy.

On a side note I have my follow up Dr.’s appointment to get my biopsy, blood test and the other sample test results on Tues. I’m a little shall we say nervous. I don’t want to have what I suspect, but I need answers at the same time for what’s wrong, because something is really wrong. I hope my GP will listen to me. He often doesn’t. He’s the type who will give you your results and that’s all he says. I’m left with thinking, well what now?! I hope I remember to ask him the “What now” question. My anxiety is very high when I have to go to the docs.

I should probably write my questions down ahead of time. If he sees my list, he’ll ask me what’s on it.

Anyway I’d love to hear from you all on your fatigue experiences.

I’ll also be waiting for that cookie I mentioned above. Maybe it will fix my fatigue. It’s worth a try don’t you think? 😉

No More Snow & Spring Flowers,

CrankyPants

 

Prep Day

Tomorrow is prep day for my colonoscopy and endoscopy on Tues. I’m so so stressed. The thought of going without food, having to take heavy duty laxatives, the pain it will cause me. Uggggh! Why,why can’t they find an easier on patients way to do these tests.

How the hell am I supposed to take all my medications on an empty stomach without getting sick?! You can’t get sick because you need to keep the laxatives down. I can’t take Gravol. I’m allergic and I forgot to get a Zofran script in time.

This is going to be pure torture. It causes the very thing I’m trying to stop.

I need answers. I need these tests, I just can’t wrap my mind around the prep.

I’ve been though prep once before that was actually even worse than this one. It was for having my bladder removed. I hurled because I couldn’t stomach the shit load of antibiotics they made me take after two days of fasting and emptying out. Two days prior to the surgery, then the day of, and 5 days after of nothing by mouth. 9 days I went without food or fluids other then IV.

This I have to fast for tomorrow, and I won’t be able to eat until sometime after the tests on Tuesday. If all goes as planned, the tests are at 9:30 am thankfully.

Tomorrow I’m allowed to have clear fluids. I’m stocked up on banana Popsicles,  Jello, chicken broth (Although I’m allergic to garlic & onion and chicken broth has both. So for that only if I’m really desperate). And I have lots of Gatorade.

I’ve been given permission to take Ativan before I go to the hospital since my fear is extreme. In fact so extreme with medical procedures that it will trump sedation. Ativan does nothing for me when this fear hits. I will take it anyway before I go and again while I’m there waiting.

I’m also being put right to sleep because of the above. Sedation won’t work for me. I’m grateful they’re willing to put me to sleep. I don’t want to know or be aware.

So wish me luck. I’m going to be one hangry, scared person for the next couple of days. Poor Mr. CrankyPants. He’s going to be home to help me. There is no way I’d be able to look after our needy dog while going through this. I also won’t be able to drive myself.

Tomorrow is our family day holiday so Mr. CrankyPants is home. Tues. he’s taken a day off work to take me to the hospital and look after things after.

I’m scared too that the diagnosis is going to be what I suspect. The other side is that I’m scared things are so bad and there won’t be answers. Sigh. They will be doing biopsies too; With those I’ll have to wait a week or so for answers, but anything they find with the scopes, I’ll know as soon as I wake up enough.

Gahh I want out!

Scared & Stressed,

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? 😉

Rainbows & Butterflies,

CrankyPants