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

 

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Update on the PPI Med

I called the pharmacy yesterday to ask about the ppi med. I’m on. I told them about the pain it was causing me and how it’s also causing flu like symptoms.

She told me in no uncertain terms to get off the med. It shouldn’t be doing that. I can’t tell you how relieved I was. Well I can, but I’m sure you already know.

So I had some other ppi’s here from when my Internist had me on them to protect my stomach from anti-inflamatories which I can no longer take.

I asked the pharmacist about taking them. I told her they didn’t make me sick last I was on them. She said they’re in the same family, take them instead. So I’m using up the old script.

The jury’s out on how I’m doing with them. When I took the pill this morning I felt okay. Now I’m hurting. I don’t know if that’s the med or the ulcers. I’m at least not running to the washroom so that’s something.

It’s always a guessing game with autoimmune disease. Is the illness making me sick or the meds, or both?! It’s such a mind game. A roller coaster ride I’d really like to get off.

I wish the medications didn’t cause issues as serious as the diseases. Gotta wonder what pharma companies are up too.

Anyway, I hope that you’re all having a low pain day.

Don’t forget I have a FB support group for those suffering with autoimmune disease! I’d love to see you there!  https://www.facebook.com/groups/crankypantsautoimmunediseaesupport/

Stop the snow & Bring back the Sun,

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

“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

 

Stunned…

I shouldn’t be with how crappy the medical system is but I am. Stunned that is.

I feel extremely bummed and let down.

I called my Internists office today (The only specialist in my town not a 10 hour round trip drive away.) To confirm that they had booked a colonoscopy for me like they said they would three months ago.

Guess what?

All this time I’ve been waiting just believing it’s a long wait, no colonoscopy was ever booked.

Not only that I called and left a message after Christmas about getting an endoscopy with the colonoscopy since I have gut pain too. Well they not only never returned my call as usual, they never booked that either.

What the hell?!

Oh yeah and the secretary read a bit of my Rheumie’s medical record to me. Apparently I’d improved after I was off the meds I thought were causing my gut issues. Umm…Nope! I wish someone had told me that I’d improved.

Good thing I got my family doc to book a colonoscopy. At least I hope that he did. That doesn’t take care of the endoscopy though…

I freakin hate our medical system. It may be “free” compared to the states but, you get what you pay for, and that’s pretty much nothing.

I don’t have the energy to fight with the medical world anymore. I’m just so done. I feel like just letting nature take it’s course at this point. Whatever will be, will be.

Add in my father in law is in the hospital in another province. We last heard before he saw the doc that he has the flu but, we haven’t heard or at least I haven’t heard if that’s what the doc believes it to be. My fil had a very bad stroke a few years back that left him unable to talk and with a paralyzed arm. He also has a very weak hardly working heart so…

Hubby and I are kind of on stand by as to whether or not we will need to make a trip. A very long trip back home. If we were to and my fil has the flu, I will not be able to see him. I’m on immune suppressants it would be dangerous for me. The trip alone would be so hard on me not too mention being around family. My family in particular. Let’s just say that’s not good for me either and leave it at that.

I can’t wait to move out of this hellish area we’ve lived in trapped now for 6 years. The hope is to put our house up for sale and leave before next winter but that depends on a lot of things. Whether we can get what we need out of our house, if my Mr. CrankyPants can find work elsewhere, and if we can find an affordable place to live elsewhere.

Somehow we have to pull this off.  I need out.

One more thing, I’ve been trapped at home all week, thanks to insane amounts of snow and icy roads not taken care of that I can’t drive on.

Sorry this is not a positive post, but this is where I get my frustration and hurt out.

Better days & Less snow.

CrankyPants

Cleared Up

So the Enbrel rashes have all cleared up. Last week’s injection I got a rash but not as bad. I’m thinking maybe my body is beginning to adjust. My next needle is tomorrow (Friday). I do my injections every Friday.

That will be a tell tale if I’m adjusting. I won’t fully know until a week later since the reactions sometimes happen after the fact.  Although the third one did not, it was within a half hour.

I was thinking the Enbrel was helping but I’m not certain yet. Given the nature of lupus/Rheumatoid has the pain moving. One day my wrists can hurt really bad and the next they’ve eased up but it’s my ankles and so on.

It’s very hard to tell if a med is helping when the disease is forever changing. At least this med is not making me sicker like the others.

How was your holiday? Ours was great! It was actually very relaxed and I’d forgotten what that feels like. Hubby spoiled me with all I’d asked for, for Christmas. It was fun.

Happy New Year everyone! Here’s hoping for a cure.

Sunshine & Rainbows,

CrankyPants

Ticked off

Since I’ve started Enbrel I’m required to see a Rheumie once every three months. That I knew. What I didn’t realize is that they call me and tell me when my appointment is. The Ins. Co. controls that.

Well sorry I told them already I’m not making a trip in the winter. I had to tell them again. Fine they accommodated that and now I’m allowed to go in April instead. Great.

Next issue…

I’m to be there at 9 am.

Umm…NO!

No way in hell can I make a 5 hour trip one way sick as hell with crohn’s sympotms and pain (Maybe I’ll be diagnosed by then who knows) and be there at 9 am. That would  mean I’d have to be on the road at 3 am.  I have epilepsy too. No sleep=trouble.

Mr. CrankyPants has to take off work to drive me. There’s no way we can make it a two day trip. They’re going to make us go broke. He’s the only one working. Plus his work wouldn’t be happy about him taking off two days.

We’re told the Dr. only does morning clinics. Well then tough I can’t be there.

I’m waiting for a call back. Last time the doc accommodated the fact that I couldn’t be there that early. I can’t even make it to docs appointment in town that early. I’m too sick in the mornings.

No one gives a shit about our health, they only care about money and their schedules. I’m tired of not being treated like a human being. I’m tired of being sick all the time and needing all this seemingly more damaging then the disease medications. And medications that force me to take trips out of town I’m not up to taking.

You’d think with all this advanced technology that I could do a Skype appointment but noo… not good enough for the Ins. Co. Rheumie has to see my joints herself.

You’d think the Internist here in town could evaluate my joints and send a report to the Rheumie. But nooo..That’s not good enough for the Insurance Co. They apparently want one to suffer if they’re having to pay out.

I’m just so done. That’s my truth today. I’m just done.

I hope to be able to move the heck out of here even before this first appointment but certainly before the second one. I can’t see the Ins. Co. paying out any longer then the 6 months they’ve allotted me anyway. 6 months is how long this med takes to work. So if I do begin to get relief and they cut me off then what?! I’m in pain again, and now the pain feels worse because I got used to having relief?!  How do the Ins. Co. nurses live with themselves in this kind of job?

Happier days & Less Cranky,

CrankyPants

 

 

The first step

Enbrel Box
                           Enbrel Box

I picked up my Enbrel today. That’s the first step to preparing myself to start the injections. Mr. CrankyPants feels it’s best to start on Friday while he’ll be home for the weekend to keep an eye on me. So I guess I can’t put it off any longer. I get a month’s supply at a time.

I have to keep it in the fridge but take it out about a half hour before I stab myself so it won’t hurt so much.

Good times. I’ve given myself needles before, I can do it again. Here’s a picture of the needle pens. I have to use one a week.

 

Enbrel Needle Pens
                      Enbrel Needle Pens

Happy Days & Fun Times,

CrankyPants

Restless Leg Syndrome

Does anyone get restless leg syndrome? I do but I’ve found a way to combat it. I know this is going to sound crazy but it works and that’s all I care about.

Someone told me about it, and I thought what do I have to lose by trying. Restless leg syndrome that’s what.

If you take any old bar of soap and put it under your sheets at the foot of your bed, it will stop RLS. I kid you not.

I always have that bar of soap now. When Mr. CrankyPants got sick recently, I had to move to another room/bed for a couple of weeks. I totally forgot about my soap and that I had RLS. Within 3 nights sleeping in that bed without the soap, the RLS came roaring back with a vengeance. It didn’t take me long to get that soap. It took about 2 nights with the soap back at the foot of my bed and the RLS is completely gone again.

I’m so thrilled because it’s something so cheap and easy that keeps me off yet another medication. I don’t believe it’s somatic but even if it were, and it works who cares. It works! I hope it can help someone else like it has me. If it does, let me know! I’d love to hear about it.

Warm weather & Sunny Days,

CrankyPants