Feel free to check out my autoimmune disease support group on FB!
Feel free to join my FB support group. Love to see you there.
Two days ago my mother collapsed. Today (Feb. 17/2019) we were told my mother is brain dead. She’s on life support in ICU fading away.
On Wed. three days from now, I’m flying home for the first time in years to support my sister through this. I’ve been estranged from my parents do to abuse, but it’s time to go home get closure, say goodbye and be with my sister and nephews.
It’s weird when a parent dies that has been abusive how you feel. I’ve been surprised in some ways by the grief but it’s different then if you have a good family. It hurts that there will never be a chance for things to be better now, that I expected to feel. It hurts that she’s almost gone. That I didn’t expect to feel. I’ve been wanting them gone for many years.
No matter what they’ve done to you or how bad it was (and it was bad) they’re still your parents and you still love them.
It’s a very very difficult decision to make to cut them out of ones life but it had to be made. So I’m going home to deal with all this. My abusive father is still alive but not well either and now weirdly broken as his slave is leaving him.
My parents told my sister not to tell me she was ill. This was back in Dec. so while they’ve all had time to process this to some degree I was shocked with it two days ago. That’s been painful too. They did this last time my mother came very close to death too. Both times I didn’t hear about it until she was on life support and not expected to survive.
At least she’s at peace now never to be abused or abuse again.
So I feel like going home, is going into the dragon’s den but at least I will never again have to listen to or see my father abuse my mother. He will try to abuse us but I won’t have it.
As far as my health I haven’t been well before this happened. The pain is bad, my kidneys are still causing trouble and my stomach is bad but I guess it’s par for the course with autoimmune disease.
Grief on every level. Just grief.
I’m so tired.
Sunshine & Rainbows,
It’s been a while. As you can tell I blog in spurts. Sometimes I have lots to say and other times it’s just the same old.
Very recently I finally had the physiotherapist come in. She gave me more answers then all the docs and specialists I’ve seen as of late put together.
I even got test results from years back.
To start with though the nerve damage..She said where the damage is on my thigh can come from near my kidney. Go figure. She thinks that they irritated or nicked a nerve during the biopsy. Hmm…isn’t that what I’ve been asking all the docs since it happened? I’m so grateful she gave me answers. She said she believes it’s surface nerves because I don’t have weakness when I walk. I did the first three days but that eased up.
So it’s basically what I was told by the E.R. doc. It will take a long time to get the feeling back. The nerve regenerates at a mind numbing speed of 1 cm every 48 hours. Wow that’s well ummm…slow.
I’m to stimulate the numb area with different textures to help awaken the nerves. Ouch. Around the numb area is where the nerve pain is. Speaking of nerve pain it hurts still but only when touched and or stimulated with different textures. It’s not crippling me at least.
That aside I’m riddled with osteoarthritis. The Physiotherapist said I have older bones then my age. Go me! That’s on top of the lupus and RA and or MCTD. Which ever the rheumie decides I have on a given day. The therapist gave me some exercises to help with my back pain/injury. And I forgot she told me she thinks that when I hurt my back what happened is I likely tore scar tissue. So another answer the docs didn’t give me. And contrary to what the neurologist said. (That I couldn’t injure myself that bad by just pulling my boot off) the therapist said it can happen even with the slightest move. I’m thinking physiotherapists know more then docs. Things that make you go “Hmmm….”
The Humira I’m on is helping with pain. I know this as it starts to wear off about 10 days after I’ve taken it. As much as I don’t like it wearing off, I’m glad to be aware of the difference it’s making.
It’s usually really hard to tell. You always have pain and you often don’t know if it would be much worse off the meds, so with it wearing off before my next dose I know it’s helping.
I hope that it keeps helping.
How are all of you doing? Are you ready for Christmas? Do you dread it? More so the social obligations? Thankfully we don’t have any and we like it that way. It’s actually mostly a restful time for us. Mr. CrankyPants takes some of his holiday time over Christmas so he has 12 days off. We look forward to that.
If I don’t get to blogging again before Christmas. I hope you all have a very Merry Christmas and a Happy New Year. Also some low pain days!
Christmas Lights & Turkey Dinners,
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,
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,
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,