I did whole long post recently and when I hit publish, it didn’t publish and it disappeared. So this is just a test post to see if the same thing happens again.
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,
Hey everyone. It’s been craziness around here. I’ve been busy painting parts of our house to get it ready to put up for sale, and shoveling a shit load of snow. Holy snow batman we’re getting up here. It just won’t let up.
I feel my heart sink every day I get up and see it still snowing. It leaves me trapped at home. I panic driving the winter roads up here since they are not taken care of. Also it’s a long unpredictable drive with a urostomy and gi issues. Sigh. Can’t wait to move.
I’ve been in a significant amount of pain with all the painting and shoveling but I have no choice, it has to get done and Mr. CrankyPants works so I have to do it.
How do you all cope with life when you’re sick? It’s so hard to keep up but it seems there’s little choice. I do get a nap in every day. Whether I sleep or not is iffy. It seems to be when everyone wants to chat, the phone rings, the dog barks..geeze. I at least lay down. The pain killers make me sleepy and dizzy. The fatigue from the illness gets me too at times.
I wanted to remind everyone that I have a Facebook Autoimmune support group going. It’s hard to grow when it’s a closed group but I want to keep it as private as possible so that people feel free to talk about things they would otherwise not. We have a great discussion going about how these diseases affect our relationships today. Drop by. I’d love to see you there. Here is the LINK.
The link is also on the sidebar of this blog.
No snow & Sunshine,
If you read yesterday’s post Here you will know I decided to report to the hospital that I woke up during a very painful procedure to me a month ago. I warned the doc I would if he didn’t put me right out and he refused. I woke up in agony.
I got a call back this morning bright and early. It was nice that they got back to me so quickly. They took my report and passed it to the proper department.
That department has already called me as well. I just got off the phone with them in fact. So this is where they’re starting. They are going to find out if there was a disconnect in information given to me. Aka the nurses telling me all I had to do was ask to be put out, and they would put me out when that was clearly not the case.
We are not yet going to make this about the Dr. Only because he is the only specialist I have the option of seeing up here in his field and if I need to see him again it would be awfully awkward if he’s made aware that I reported him.
Having said that we’re not ruling that out yet because he also treated me poorly. We’re just looking into some other things first. I told the hospital that I thought there would be communication between the nurse I’d talked to about being knocked out and the Dr. There was none.
They just want to see first if I was given some false information. So they are investigating. I have asked them to keep me in the loop to which they agreed. I have offered to educate them on people with ostomies because I have one that needed to be watched during the procedure and no one watched or looked after it,even after I made it clear it needed to be watched. No one knew how to.
So first,they’re looking into whether there needs to be some policy changes within the hospital. More communication, proper communication, and an option put in place for people like myself who don’t sedate well or at all if one doesn’t exist. After that’s all looked into then we’ll decide where to go with the Dr. side of things.
Health Services was very kind, compassionate and seemed to want to help and make things better. If that’s true then I feel like I did the right thing. Maybe, just maybe it will bring about some positive changes in the hospital for others as well.
Rainbows & Sunshine,
I’ve been thinking a lot about what I went through with my scopes a month ago. Some will know the story from This Post but long story short I was supposed to get Profinal and be put right out for the procedures. My fear is such that it will override sedation. The doc on the day absolutely refused to do so. He completely blew me off actually turning his back to me and refusing to discuss it further or answer any other questions I had for him.
He had the nurse chasing me around the room with freezing spray for the endoscopy and I wasn’t done asking questions. Doc refused to talk to me further.
This is all while Mr. CrankyPants and I are standing in the middle of a dumpy room in my gown carrying all my stuff, because apparently there were no stretchers to be found.
When one finally did come, they got me on it, and I started to cry. The nurse didn’t try to comfort me, she just wanted to shut me up to get the mouth piece in my mouth and knock me out.
For those who don’t know I warned them that my fear would override the sedation. It did. I woke up in the middle of my colonoscopy in agony. He was hurting my stomach so bad. I was promised that if I were to come to that they would give me Profinal. I’m pretty sure that didn’t happen given I could clearly hear the Dr. say and I quote, “We are almost done.” He said this twice. I remember the feel of the scope being taken out.
The pain was horrible I was rocking back and forth saying it hurts, it hurts.
The doc never came to see me after or address this.
I was sent packing from the hospital throwing up.
I’m so done with being treated like shit by the medical world. This has really done a number on me. There’s reasons I won’t go into why this is more traumatic for me then maybe some. I made the doc aware of those reasons and he still ignored me. He didn’t even acknowledge I had said anything.
I also still have a lot of pain where it hurt when I woke up from the procedure. I know I have ulcers but they didn’t hurt this much before. I wonder if the doc did damage.
I’ve had a few people tell me I should report this. I’ve had another Dr. say I should never wake up during a procedure, and I’ve had some tell me to ditch him as my Internist but he’s my only choice up here. Not that I want to see him again at this point unless it’s to call him on all this.
All this to tell you that after a lot of thought, I’ve decided to report it to the hospital. I haven’t done it sooner because I’ve been to scared of being black listed but, I’m tired of the medical world getting away with bad treatment. I’m done letting fear stop me from reporting it.
I called the hospital today. I found out that they have a complaints department. I’m going to start there. Unfortunately, I called at 4:32 pm only to find out that they close at 4:30 pm. I did leave a message for them to call me back, and I probably won’t wait for them too. I’ll call them tomorrow.
The above situation is one of quite few up here I’ve had to deal with. No wonder people develop phobias of medical anything (Mine is bad). It’s not what they like to call “White coat syndrome.” It’s fear of being abused or blown off. If I don’t speak up, who will. Maybe I can stop this from happening to someone else.
I’m only one person but it only takes one to start the process of change and awareness. I’m scared, but I’ll make the call anyway.
So wish me luck!
Warmer Days & Rainbows,
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,
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,
Scroll down some to see more below. 😉
Link is in the sidebar where the arrow is pointing.
This is the link. Click it and join the dark side…ahem I mean the Facebook Autoimmune Disease Support Group.We need you. ———————>>>>>
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,
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.
You will be asked three questions before approval.
Better Days & Where’s spring,