DAILY CHECK-IN THREAD NO. 165

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BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/22/2017 8:27 AM (GMT -6)   
I selfishly started the new thread with a few posts to go, so I might receive some responses.
Below is Karens last post in the previous thread.

Good Morning All!!!

Raining hard here today off and on. Guess we are suppose to get thunder storms this afternoon. I hope that they aren't bad.

My beans still have not come up. I think I will have to replant if there is time. It is getting late. My gladiolas are up. No blooms yet. I am sure that they will be pretty. Somebody picked them out for me. I hope they are bright and pretty.

I got cucumber plants to plant and some peppers. I have rosemary and basil in a pot. Tempted to put them in the ground and see how big they can get. I love gardening...

I hope all of you are having a good day. Welcome to the new members on the forum.

Take care all...

Hugs, Karen...

Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/22/2017 9:02 AM (GMT -6)   
Hello everyone

Since last night I have been in a fast spiral down as if I had stepped into quicksand.

Found out from my neurologist that he had prescribed the Baclofen for face pain which is such a minor issue compared to the TN clusters and migraines that I hardly notice it anymore.

I won't bore you with the details however conversations went back five or six times through the patient portal, and in the last one back to the doctor, I questioned why he put me on a medication for face pain. When it was not my primary diagnosis and was a minor pain.

Also questioned why he would put me on a med when the side effect number 4 or 5 was headache this makes no sense.

I reminded him that every time I've seen him or conversed with him through the patient portal that head pain specifically cluster and TN were discussed. I closed the message saying that I was weaning off the Baclofen.

As of today I have no strength to find a new neurologist I don't even have the gumption to call my GP who is very supportive of all my issues.

I find myself just sitting and staring for long periods of time. Thoughts of being in this severe pain for the rest of my life brings very dark thoughts. Trying to use skills finding it hard.

I know that this will most likely pass. Try to think of what I suggest the other people that feel like this, but it seems empty now, any suggestions would be helpful and I guess I know that time is needed here

I just I just can't think through the head pain right now thank you for reading this long post I usually don't post this much

Peace
Trina
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

F27
Veteran Member


Date Joined Feb 2016
Total Posts : 840
   Posted 6/22/2017 1:11 PM (GMT -6)   
Ow.

Ow. Ow. Ow. Ow. Ow.

I don't know what skill I would use in your place - probably distraction as that's the one skill that I know best. Specifically Netflix-based distraction, maybe even Breaking Bad. The opening episode where Walt finds himself on the road with a gun in the hem of his tighty-whities is cinematic genius.

Loss of hope is the crappiest part of having a chronic condition. I don't care what you have, if it's something that impacts you daily, at some point in time we all feel "why bother". For me the answer is always the little stuff: flowers, bumble bees, squirrels and birds, ice cream floats, coffee, and everything else that adds up to just a little burst of pleasure. Granted, in your case an ice cream float may not be the best idea, but you could go looking for squirrels. ;-)

I often wonder how to go about giving advice to people who can predict the words coming off of my keyboard before I actually type them. Who shrinks the shrink? You're 10 times smarter about this stuff than I am, so I don't think there's really much I can give you in terms of advice.

I can commiserate however.

We put so much faith into the people we charge with helping us that when they screw up it almost feels like a betrayal. I guess in many ways it is. What kind of dumb*** would prescribe something to you that would actually make your life worse? I know it's a balancing act - what sucks more, the side effects or the condition? - but gee whiz, you would hope that a specialist that you pay would have your back. Grrrrr.

Way to ditch the Baclofen. Sometimes we have to be our own best advocate.

Contacting your GP and sorting stuff with your Neuro sounds like it should be a tomorrow problem. Today should be a Netflix day.

I'll watch this thread for the next couple of hours in case you want to chat.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/22/2017 2:17 PM (GMT -6)   
F27. aka C

Thank you so much for your reply and standbyedness. [that is an Opus word]

I forced myself to pick up Johns chef jackets from cleaner, they are on vacation next week. So I will do them. Good thing. I dissociated on the way over and almost hit 2 cars, 1 at 2 separated times.

Managed to make an appointment with my GP for Monday at 1:40pm. At the very least I will get a script for the Tylenol 3 and explain the nauseam of situation, so he will know, more will be used than usual.

Neuro, responded to my am reply, only reaffirming that he does not listen to me and he has limited resources willing to offer. I am not a difficult patient I know this without a doubt.

I would love Med weed, NJ has not completed the red tape yet and few docs will to prescribe.

I have a call into my shrink, who I saw yesterday, how many Ativan can I take in one day?
Alas I will sleep all day, better than the horrid thoughts!!!

I took the dogs to the dog park 2 days ago. Alley was still on the lead. A woman came by with a teacup terrier mix, untrained, no leash,[which is not required inside the park] The little rat charged Alley [61 lbs] scared her, she hid behind me growling, the woman, saying no, no so soft the pip squeak never acknowledged her.

Charged Alley again and drew blood on her paw, I picked up the little sh.... just before Alley had the chance to CHUMP! Saved by the hair on its tail.

And the women, starts yelling at ME! I layed into her about training dogs, responsibility and all kinds of stuff, took my dogs and left! She was standing with her mouth open staring at me. The rat yapping like a squeeky toy,.

This week, nobody needs. and a ramble. Thanks for listening.

Peace
Trina
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

F27
Veteran Member


Date Joined Feb 2016
Total Posts : 840
   Posted 6/22/2017 2:53 PM (GMT -6)   
Ahahahaha! I never understood the purpose of those little teacup dogs, they're just like really needy cats who bark. Although I gotta admit, chihuahuas are cute as he11 with their little buggy-outee, Marty Feldman-esque eyes.

Remind me to ask you when you plan to be on the road next time I'm on the East Coast. ;-)

I'm glad you're going to be able to grab some T3s. You must be a little relieved too. I don't know what's happening south of the border, but up here in Canada our government is getting bent out of shape about opiates, and Doctors are reluctant to prescribe them. Ironically enough, that just means more people will purchase Fentanyl on the internet, which in turn will exacerbate the same addiction/overdose issues that the government is trying to stop.

Medical weed in Canada is interesting. The only way to purchase it legally is through a network of licensed providers who will mail it to you once you've ordered it. I don't have enough experience with it yet to say if it's gonna be a win for me, but I hope you get a chance at some point to see if it will work for you.

You and John gonna get a chance for a vacation this year?

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/22/2017 5:56 PM (GMT -6)   
Marty Feldman, LOL

If I am leaving the house [today was real hard] on your next trip south east it would be interesting to meet up.
no vacation location this year, just local day trips as pain allows. couple weeks ago he had off. We had one good day out of it. I ought to be thankful.
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 6/22/2017 7:11 PM (GMT -6)   
here for ya.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/22/2017 9:14 PM (GMT -6)   
Thanks mate, checkin tomorrow
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/23/2017 8:41 AM (GMT -6)   
Sorry I am late...

Trina, I hope you are feeling better by now. I am sorry for what you area going through. I know it must be hard. Hang in there friend.

I hope you can talk to your GP or another neurologist soon. You deserve some relief.

Keep your chin up. I don't understand the little dogs either, they always seem to be more aggressive.

Take care Trina. We are all here for you.

Hugs, Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

pitmom
Veteran Member


Date Joined Jan 2015
Total Posts : 2113
   Posted 6/23/2017 9:03 AM (GMT -6)   
Trina, the thing about quicksand is...don't struggle...it will only take you down faster.

Living near the shore we hear about rip currents all the time. Swim parallel to the shore, if you're tired...float. Don't fight with the current or you'll drown.

I'm trying to float. I'm staying away from those that would utter the words "It is what it is." or "This too shall pass." simply because no one has bail money.

Float with me.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/23/2017 1:08 PM (GMT -6)   
Thanks Karen and Pitmom,

Your support brings tears to my eyes as does HT and F27.

I have managed to make an appointment with my GP for Mon afternoon.

Johns Sous-Chef gave us a referral for the Neurologist he sees, and my therapist is asking around for one down town in Philly.

Oddly, none of this lifts my spirits at the moment, I feel they will either turn my away as too complicated [as has happened in the past] or they will act as the others have, see me as in significant.

Just got off the phone with my psychiatrist, she ok'd 3 ativans a day if I need them. Still having dark thoughts. Can not get myself to work on anything, art, sewing crocheting, journaling, nothing.

I am floating, just floating in the sea feeling the waves and sun on me. So glad I did that alot in my 20's and 30's, I can recall that feeling fast! nice.,

Peace to all
Trina
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Dawn85
Regular Member


Date Joined Apr 2017
Total Posts : 202
   Posted 6/23/2017 2:23 PM (GMT -6)   
Hi all,

I have the summer flu. Feel like garbage. Ugh
I am working on me day by day. Laughter and playing are our cures! Kids do this, why can't we?

Rx
Trileptal 300mg times 2 twice a day- bipolar
Celexa50mg 1 time a day- Depression anxiety
Protonix 40 mg 1 time a day- GERD
Vistaril 25 mg 1 time daily- PBS (painful bladder syndrome)

The Dawn85

Sending Hope, healing thoughts, love and happiness your way. Stay cool or warm and safe.Stay strong.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/23/2017 3:23 PM (GMT -6)   
Dawn, do you take any vitamins or anything? It seems like you catch flu a lot. It seems you were just sick about a month ago. I wonder if you should check your immune system??? I get flu shots every fall. They do help me. Maybe they would help you too.

I hope that you feel better soon hon.

Trina, Try to think positive. If the doctors treat you as insignificant, fire them and find another. You deserve to be helped. Don't give up and don't lose faith. You will beat this...

Hugs to all.

Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/23/2017 6:42 PM (GMT -6)   
dawn try to push the fluds, stay hydratated.

feel betterer tooh

Peacee
Trina
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

Dawn85
Regular Member


Date Joined Apr 2017
Total Posts : 202
   Posted 6/24/2017 12:30 AM (GMT -6)   
We had a stomach virus last time.

This is a summer flu, I am using nebulizer and pushing fluids, also resting and taking ibuprofen for aches. They seem to have gone though.

Doc said I am doing it all right and I will recover fine. No lung issues outside of flu, I am not having sore throat or pain everywhere like yesterday and day before.

She also said that my immune system was down do the heat wave hitting Cali right now and lack of sleep from heat as well. So docs orders are fluids, rest, keep cool and use nebulizer to keep lungs relaxed.

So now I have to shake for a bit due to albuterol, but small price for flu to go away and not cause more trouble like in Winter
I am working on me day by day. Laughter and playing are our cures! Kids do this, why can't we?

Rx
Trileptal 300mg times 2 twice a day- bipolar
Celexa50mg 1 time a day- Depression anxiety
Protonix 40 mg 1 time a day- GERD
Vistaril 25 mg 1 time daily- PBS (painful bladder syndrome)

The Dawn85

Sending Hope, healing thoughts, love and happiness your way. Stay cool or warm and safe.Stay strong.

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 6/24/2017 3:32 AM (GMT -6)   
yep, my little buttons had small dog syndrome. a former mate use to tease her and he would grab me by the shirt, and boy, the gutterall growl was killer. she was as cute as a button, however her teeth were razor sharp. former show dog, and i know she hated it. was not good with kids either. i miss her sometimes. she had flamboyance and attitude!!

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/24/2017 12:04 PM (GMT -6)   
I miss my GOOSEMAN, this rough spot is awful with out him snuggling me. I am allowed 3 ativans a day as needed to get thru this, I adore my psychiatrist

Dawn hope you are feeling better
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/24/2017 2:58 PM (GMT -6)   
Sorry Trina, Our pets can be so comforting when we need them to be. Do the other two comfort you when you are down? I hope that things get better. I am glad you have a good psychiatrist. That makes a world of difference.

Heading off to a music festival. I can't believe I am going but I am going to try. I am not much on social gatherings or stuff like that. I hope that I like the music.

Take care everybody. Dawn I hope you are feeling better.

Turtle, you should be up and about soon.

Hugs to all!!!

Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Domino2012
New Member


Date Joined Jun 2017
Total Posts : 6
   Posted 6/24/2017 3:44 PM (GMT -6)   
Hi everyone,
Today was a particularly hard day and I am finding it hard to stay positive.
My partner and I broke up late last night. It came as a big shock to my system after having such supportive conversations with him about the eay i am feeling and he assured me we'd get through and he'll be with me on the journey. One little comment tiped him off the edge and no matterhow much I begged and pleaded my love for him he was firmhe 'can't do this anymore'. I spent today mainly vegetating in bed and thanks to a really good friend and my family i was able to keep sane. Now on my own and thoughts start flooding my head. I haven't slept for the last 24h and not sure if I'd get any sleep tonight. I feel hurt, humiliated, scared and vulnerable. I know in the end it won't kill me but right now I wish i'd just stop feeling as the pain and fear are too strong to bare.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/24/2017 5:07 PM (GMT -6)   
Hi Domino,

I am sorry for what you just went though. But I would say, better now than later. Know you are an awesome person. I read "if you can't be there for me at my worst, you most certainly don't deserve my best". It will get easier with time, but that doesn't probably help for right now. Know we are here for you and we support you.

Try to hang in there,

Gentle hugs,

Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Dawn85
Regular Member


Date Joined Apr 2017
Total Posts : 202
   Posted 6/24/2017 6:11 PM (GMT -6)   
Update official day 4 of summer cold.

I am coming to the end of this doc says. She gave me an Rx of pred and said 3 to 5 days and this will be over. So rest and relax and keep my fever down because in summer a fever can cause a lot of problems. So ibuprofen and pred for now
I am working on me day by day. Laughter and playing are our cures! Kids do this, why can't we?

Rx
Trileptal 300mg times 2 twice a day- bipolar
Celexa50mg 1 time a day- Depression anxiety
Protonix 40 mg 1 time a day- GERD
Vistaril 25 mg 1 time daily- PBS (painful bladder syndrome)

The Dawn85

Sending Hope, healing thoughts, love and happiness your way. Stay cool or warm and safe.Stay strong.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/25/2017 8:56 AM (GMT -6)   
Stress can cause us to get sick a lot. Just saying... I am glad you are coming to the end of your cold Dawn. Or whatever you have... I hate being sick in the summer, it is the worst. I get a lot of allergies during spring and summer too. And of course fall. And it is totally no fun at all.

How is your son? Keep us posted on how you are doing.

Take care and hang in there...

Hugs, Karen...

Hugs to all!!!
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

theHTreturns...
Elite Member


Date Joined Mar 2009
Total Posts : 19782
   Posted 6/25/2017 6:59 PM (GMT -6)   
was told yesterday mum has been sectioned under the mental health act and shrink is seeking ECT. my sis, me and her partner heading down in a couple of hours. we are all for it. i will advise later.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 41715
   Posted 6/26/2017 8:40 AM (GMT -6)   
I imagine that you feel the ECT would help her. I hope that it does.

I hope all goes well when you go down HT.

Hugs, Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7087
   Posted 6/26/2017 8:49 AM (GMT -6)   
Domino2012,

I know how devastating this is right now. Thank goodness you have friends and family that care enough to help you "float" through this.

As my therapist reminded me this week, "when people do the opposite of what they say, it is usually their fear of not being able to complete the promise." There could be a hailstorm of emotions and egos whirling around inside white people respond this way, who know why for sure.?

One think I can 100%. We can not control them. Your are better off without him, and I am better of without a Neurologist faking it.

We both are will be much stronger in the end; on the other side of safety in bed, PJ days with the dogs. Ice cream for breakfast lunch and dinner for a day or two. Coffee.
Lots of water with cherry juice.

Whatever works for you. We don't giver our mental help away to those that do not respect us.
Job well done.

Dawn, hang in there good health is just around the corner.
Moderator - Depression

"...when the gift of sight is cause enough for jubilation."
Billy Collins from the poem. HIGH

DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;
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