[Moose72]

@BirdDancer I will show your photo to my friend who loves hedgehogs! She has one as a pet, too.

[Moose72]

Been sick. Nasty cold with swollen sore throat and "productive" coughing and a stuffy nose. Thank goodness that's over! I was sleeping a lot to fight it and I finally have won!

I wrote my penpal of 16 years three emails today. I just love him! We are two peas in a pod. We have been talking about a piece of music called Miserere Mei Deus which means Have mercy on me O God. It is Psalm 51 from the bible. We were discussing a particular recording of it and its history. Everyone should have a soulmate like him in their lives!

I cleaned the kitchen today- dishes, countertops and floors. Feels good! N3 is supposed to be doing the bathroom but its 11 pm and I don't think he's even started. Children! Reminding him doesn't work. He will be gone all of tomorrow with his dad at church. Plus I need him to finish some important paperwork. On a fun note, he's working at McDonald's and people keep telling him they like his voice! Lol He works the drive thru a lot. People have even given him tips! Lol. I told him maybe he should go into radio!

Well here I am up late (for me) listening to music. I figuredI'd been MIA so I'd better post. Hugs to everyone! I will go back and read what I missed tomorrow. (I plan to clean my bathroom and bedroom tomorrow too.)

[~Christina]

Originally Posted by rose1985

I'm so sorry your pain is so bad. do you get anything for the pain? I really hope you start feeling better soon.


You're such a wonderful person! You really are special! Please don't give up!

Thanks,

No not a specific pain Med, unless I had a limb hanging by a tendon it virtually impossible to get any kind of pain meds anymore.

My only hope is my breathing clears so I can go back on a biologic which hopefully will help with the PsA pain

[~Christina]

Originally Posted by Wander

Words fail me. I feel helpless being unable to visit in person and help a bit. In the end I can’t think of anything at to suggest. All I can do is applaud you for your tenacity, and courage. It is an awful situation to be in. The light must be on its way to drag you out of this hellish experience. Please hang in there. Again words seem useless to bring you comfort. I’m so thankful your hubby is being such a strong supporter by helping in anyway he can.


So, post as much as you need, or want, we want to hear from you often. I say f*** off pain and other problems. Leave Christina alone!

Thanks Wander

[~Christina]

Originally Posted by Wander

After an early morning swim I felt great. Then I had a nap. After that my Mum took me to my place to water my plants.


Things seem to be improving, but I now am slowly coming of Haloperidol due to vision side effects. Also reducing the Lorazepam as I don’t want to be dependent on high doses.


Since early last week my memory has been terrible. I constantly forget where I am in conversations. It’s like all memory of what we were talking about just disappears. So I have to keep asking people to tell me what I’m talking about. My Mum, T, and friend all commented on my poor memory.


Since yesterday I have begun reducing those meds, but only seem to be getting worse. I slur my speech sometimes too. I’m only on low doses of Seroquel. I’m getting worried. Primarily because this could be permanent, an secondly because these meds help me a lot.


I told my nurse but he had no real idea. As it is Saturday night I can’t see a pdoc (mine is on holidays this week.) till at least a Monday. This is not worthy of interrupting the on call doctors week end.


It’s like someone gave me ECT without telling me. My mood is still good, but I am anxious over these things. I’ve been IP for 12 days and thought I would be going home Monday. Now with my neck procedure on Tuesday, and having to taper off of meds that were helping me, I don’t know when I will go home. I don’t even recall what I was going to say next. I’m so lost and confused.

Once our minds get so twisted and overwhelmed we wind up on meds that do help untwist things but our brains also need time to function and honestly slow down, hang in there I’m so interested in that needle procedure and hold high hopes it helps you

[~Christina]

Originally Posted by Wild Coyote

Hey There Bizi!


Thanks for thinking of me. I think of you, as well.


Your mom often crosses my mind, too.

You are both sweethearts!


I am doing okay, thank you. I have a lot going on right now; I am/have been very busy attending to many current demands.


Have been into a lot of physical activity. I have been clearing a large portion of the house, getting ready for some renovation. I am in a lot of pain anyway, might as well work on fitness. It does make the pain worse and/or creates new pain for awhile; yet, it quiets down some. The baseline chronic pain remains. I've decided to work through it as much as possible.


I receive a magazine full of the stories of "disabled" athletes. They are out running with 1-2 prosthetic legs, playing basketball in wheelchairs,, skiing, etc. It inspires me to try my best to work through my own "perceived limitations."


I can be fit and dealing with chronic pain or I can be unfit and dealing with chronic pain.. While this type of pain and the added pain of "physical training" is incredibly challenging, in the words of my neurologist, "Pain has never killed anyone." Yes, it can even be excruciating and while extremely uncomfortable, it does not kill me.. I tell myself this in the middle of the night when my body is screaming from/with pain. Ha! Ouch!


I can mess with this right now because I am not in the midst of a PsA or fibromyalgia flare- up..


Exercise has always helped me to cope with stress.


Some other life challenges are "flared up" and are additionally challenging. I work at simply taking life a day, sometimes an hour, at a time.


This is the short answer to your question!


Love ya, Bizi!


Love to All!

I needed to hear that today while my chronic pain is as you know a monster right now. my friend

[~Christina]

Originally Posted by Wild Coyote

I am hoping your doctor can help you.


While a biologic cannot be used, might it be possible to again do a course of prednisone? I think that might help the horrible PsA flare you describe?

I know prednisone can trigger mania, so it's a toss, as you know.


I am thinking of you, praying for you, am offering comforting, healing energy.

I am here for you, Christina. What can I do to help?

As you know today isn’t really any better.

Steroids while out of town?!! I think could potentially be worse than just dealing with the pain. Steroid = zero sleep and doing that stuck in a hotel room ? I’d probably be literally hanging from the ceiling sobbing.

Well my husband got up and his back is out. This happens out of the blue sometimes. He has broken his back twice. He’s shuffling around and trying to slowly stretch so ibuprofen , heating pad and Flexiril for him. I hope the disc’s slip back into place while he sleeps.

So we are such a great pair aren’t we?!! I have to LOL

Things could be worse tho ... so there’s that.

Thanks everyone

[~Christina]

Originally Posted by Tucson

@~Chrostina:


I hope you are feeling better soon. Please do not do anything. You would be sorely missed here! Too bad there is not anything for all that pain you are experiencing, Maybe being very assertive with your doctor would help?

Thanks hun until my breathing improves my rheumatologist doesn’t want to start me on a new Biologic. So .... hurry up and wait.

[~Christina]

Originally Posted by BirdDancer

I've been having sneezing fits. It better be allergies and not some new cold coming on.


I'm not going to leave my house today. All I will do is finish up my Christmas cookie project. Today's will be the most elaborate of them all. I have gone nuts with my plans for these. They are a 3-dimensional cookie in the shape of a bee hive, filled with rum eggnog. I even bought edible bee decorations to stick to the tops. Others will be covered in dark chocolate, white chocolate, and white chocolate dyed green with food coloring, to look like standing Christmas trees. Then they will be decorated.


I also plan to make marzipan hedgehogs, then arrange them around one of the cookie "Christmas trees". So not me, but I'm doing it anyway as a grand finale to the project. Then, you'll all be spared anymore posts about this.

Your making masterpieces and I literally screw up pre maid cookie dough LOL

I can’t wait to see them

[~Christina]

Originally Posted by Jennifer 1967

I’m so sorry you are struggling with these things. I wish I could take them away. Thinking of and praying for you and sending hugs and supportive vibes. Hang in there.

Thanks so much Jennifer I hope your healing well from your fall

[~Christina]

Originally Posted by Nammu

My daughter's wedding gift is supposed to be delivered today. I hope it is everything I hope. It's a sculpture in her style and colors. This ordering of things online and only seeing a picture is nerve-racking. I like to see and feel things but there are no stores around here anymore.


Read more on what the docs are biopsying. Shouldn't have done that. Looks like I'll be having more scopes in my future.

I hope the gift your ordered is wonderful, it is tricky when ordering online.

More scopes ?

[~Christina]

Originally Posted by BirdDancer

Christina and Wild Coyote, I'm so sorry you're both suffering so much from your physical issues. I hope the holidays and the new year bring relief. I know from my various past psych and other issues, that it sucks to have to be patient. It sucks to have to work so hard, but we must. Things always seem to improve.

I'm also hoping that everyone suffering from insomnia and psychological strife will feel better soon.

I didn't complete my bee hive cookie project, because I fell short on a key ingredient. Tomorrow I'll do that. The dough is waiting in the fridge. Instead, I completed my marzipan hedgehogs. I also made a marzipan Christmas tree and chocolate covered marzipan star-shaped "gifts" for under the tree. It's a silly looking scene, but maybe it will bring a smile to someone's face. The photo is attached.

Thank you so much I’ll manage this pain somehow, seems I always do.

Oh my gosh !!! That’s beautiful !!! You have an amazing gift

[~Christina]

Originally Posted by Blue_Bird

Had a good day! Getting into a new book, The Host by Stephanie Meyer, very interesting story. Also, a person here recommended the site BookBub for deals on books and there's many for free as well, I got a bunch for my kindle, so thank you!


I'm almost finished making Christmas cards. Just one more to go, then two of them will be mailed out and one will go to my sister and family. I'm happy with how they're turning out. Considering making cookies too to give to my sister &family for Christmas. Maybe just some traditional chocolate chip, not sure yet though. I'll have to see what ingredients I already have then figure out what I can do.


I decided I'm going to talk to my care manager about getting into their vocational rehab/supportive employment program. I feel I'm ready to get a part time job. Very excited about that. It will be nice to feel like I have a purpose again. I'm going to have to hold off on starting up classes at my college again until fall because I need to pay off a balance on my account before I can register. I should have that paid off in time to start classes again in the fall semester, part time, (just 1 or 2 classes, don't want to overdo things). Waiting on that will give me a chance to go through the voc rehab program, get a job, get into the routine and used to that before I start adding more stressors so I'm not piling up too much stuff at once, stress is a major trigger, and I will likely be moving into a new apartment by then as well.


Hope everyone is doing well and has a good weekend

It’s a great book

You making well thought out decisions on how to go about life and not overwhelming yourself . Good job

[~Christina]

Originally Posted by Moose72

Been sick. Nasty cold with swollen sore throat and "productive" coughing and a stuffy nose. Thank goodness that's over! I was sleeping a lot to fight it and I finally have won!


I wrote my penpal of 16 years three emails today. I just love him! We are two peas in a pod. We have been talking about a piece of music called Miserere Mei Deus which means Have mercy on me O God. It is Psalm 51 from the bible. We were discussing a particular recording of it and its history. Everyone should have a soulmate like him in their lives!


I cleaned the kitchen today- dishes, countertops and floors. Feels good! N3 is supposed to be doing the bathroom but its 11 pm and I don't think he's even started. Children! Reminding him doesn't work. He will be gone all of tomorrow with his dad at church. Plus I need him to finish some important paperwork. On a fun note, he's working at McDonald's and people keep telling him they like his voice! Lol He works the drive thru a lot. People have even given him tips! Lol. I told him maybe he should go into radio!


Well here I am up late (for me) listening to music. I figuredI'd been MIA so I'd better post. Hugs to everyone! I will go back and read what I missed tomorrow. (I plan to clean my bathroom and bedroom tomorrow too.)

Hope your back to good health soon!

Pen pal of 16 years !! That’s so awesome

[~Christina]

Ahhh I pretty much posted my update on reply

Everything is basically the same. Pure suckage but I will some how manage. This is just terrible timing with yet another trip. But the day after I got home from our trip in August is when this whole mess started .. so thinking of it going for freaking mooonths just makes it worse.

I’ll eventually catch a break.

Thank all of you for the wonderful support , it truly does mean a lot

[Wander]

Originally Posted by ~Christina

Once our minds get so twisted and overwhelmed we wind up on meds that do help untwist things but our brains also need time to function and honestly slow down, hang in there I’m so interested in that needle procedure and hold high hopes it helps you

Thanks. I am both excited and anxious for the injection Tuesday morning. The effect should start that day and last months in the least. I am excited as this mental torment may end, but nervous it either won’t work or worse, give me horrible side effects.

Do not fear. I will be talking all about it once it is done. I’m super curious about it too.

Originally Posted by Moose72

@BirdDancer I will show your photo to my friend who loves hedgehogs! She has one as a pet, too.

I hope she doesn't get mad at me 😉 You know, these marzipan hedgehogs taste good!

[Wild Coyote]

Originally Posted by ~Christina

I needed to hear that today while my chronic pain is as you know a monster right now. my friend

Yes, there's an important distinction, for sure..
You are in an acute flare, which is a completely different story.

I am dealing with baseline pain right now, which is excruciating; however, the whole degree with which you are currently dealing is even more overwhelming and my heart goes out tou you.

You've been asked by a few friends here about pain meds. I am furious you are not allowed stronger, more appropriate meds for pain. It's inhumane.

As you know, I strongly advocate for the appropriate use of pain meds. I have openly shared my stance, as well as my need for pain medication. I have been very clear about the dire need for pain meds for severe, life-altering chronic (non-stop) pain. Unfortunately, I have been viciously attacked here for having been open about my stance and for my own need for pain meds. It's exactly that type of attitude that denies you, Christina, the pain medication you so desperately need..

Is there anything I can do to help you more?

May you feel surrounded by Lots of Love!

[Blue_Bird]

I feel weird today. Slept 4 hours last night, woke up wide awake, cleaned and paced around listening to music for 3 hours straight early in the morning. Felt good most of the day but then I started seeing shadows and worrying about my meds poisoning me, and something burrowing through my brain. I'm forcing myself to lay down right now, I don't want it escalating.

Out of nowhere, I had a real burst of anxiety. Sometimes it is related to my physical health, usually relating to my heart (probably just heartburn and indigestion). Anyway, it still causes me anxiety, on occasion. I took an Ativan. It's very likely that that will do the trick. I just need to wait about 30 minutes.

I made celeriac and celery soup. I guess I still have to make a main course for dinner. Sometimes I just wish I could have a break, especially on days when I've been doing other big projects.

I'm bound and determined to get through this d*@& day feeling alright. I deserve that at least. I will eat something good , listen to some music, maybe read -- watch a little TV and let my problems melt away. I need to sleep early. Tomorrow I start being evaluated at my job to see if I will keep it or not. I'm really stressed about it and while I've had plenty of training I don't feel that prepared. It really couldn't get over quick enough. I just need tomorrow to come and go. But as for today -- I'm not letting tomorrow screw up today. I just won't.


I don't feel great, but I'm trying. I'm at least trying.

[Wild Coyote]

Originally Posted by Blue_Bird

I feel weird today. Slept 4 hours last night, woke up wide awake, cleaned and paced around listening to music for 3 hours straight early in the morning. Felt good most of the day but then I started seeing shadows and worrying about my meds poisoning me, and something burrowing through my brain. I'm forcing myself to lay down right now, I don't want it escalating.

Hi, I am sorry you are feeling this way this afternoon.
It's so wise of you to take measures in hopes of things not getting any worse.

I hope things do settle down for you. Either way, we are here for you!

[Wild Coyote]

Originally Posted by MarcusAurelius

I'm bound and determined to get through this d*@& day feeling alright. I deserve that at least. I will eat something good , listen to some music, maybe read -- watch a little TV and let my problems melt away. I need to sleep early. Tomorrow I start being evaluated at my job to see if I will keep it or not. I'm really stressed about it and while I've had plenty of training I don't feel that prepared. It really couldn't get over quick enough. I just need tomorrow to come and go. But as for today -- I'm not letting tomorrow screw up today. I just won't.


I don't feel great, but I'm trying. I'm at least trying.

it sounds like you have a plan for the day, which might be very helpful!

All we can do is to do the best we can do and it sounds like you are doing it!

I hope you have a much better day than anticipated!

[bpcyclist]

Originally Posted by StreetcarBlanche

Could be the side effects of reading my posts. Haha! *joke*

Hope you feel better tomorrow.

Ha! would love to pass this off, but I am afraid the only thing responsible for this is my own crazy brain.

[bpcyclist]

Well, I don't know what is wrong with me. Woke up again today absolutely furious about absolutely nothing. Enraged. No issues. Got out on the bike anyway and managed to ride for 90 minutes--furious the entire time. About nothing. Weird. Finally did some breathing and calmed myself down and doing pretty well now. Not sure what's wrong with me. Took maybe 6 hours to get back to some kind of normal baseline. Mixed state coming on? Could definitely be. I am just almost never angry. I dunno.

Took a pretty significant spill on the bike yesterday right in the center of town. A very sweet woman saw the whole thing and stopped to help me. Very kind of her. Really touched me. Didn't hit my head, fortunately, but fairly banged up otherwise. It was wet and slick and I just went down on a tight corner. One of those things that happens from time to time this time of year. Still, I felt like an idiot.

I am heartbroken for those who are suffering from physical pain that is not being adequately treated. As a former prescriber, it makes me angry. I may have been a bit too generous with the narcs when I was in practice, but I chose early on in my career to basically always believe the patient when she/he told me they were hurting. I would not change a thing about all that. Sending those suffering strength and compassion. I am so sorry. I wish I still had a license--I'd be more than happy to take care of the problem...