Barbarannamated: pain<-->depression...chicken<-->egg

[alexjuice]

I am curious because of my own reaction to vitamin D which is vascular and knowing your situation, I wondered of your levels, if measured.

 

Do you know what they were? Low or high?

[starlitegirlx]

I'm sorry you couldn't make it to your appointment. Withdrawal seems to throw kinds into the most common things we did before with no issue or concern. It gets so tiring after a while.

 

I hope you are feeling better now. I think the worst part is how it waxes and wanes. It seems to make it worse though the good days may give us hope, the bad ones knock us for a loop.

[Barbarannamated]

I am curious because of my own reaction to vitamin D which is vascular and knowing your situation, I wondered of your levels, if measured.

Do you know what they were? Low or high?

 

Alex,

The last order did include the Vitamin D you mentioned, but I don't have copy of results. Doc said labwork looked ok in phone conversation, but I realize that's subjective. I'll let ya know.

 

Thanks.

B

[Barbarannamated]

I'm sorry you couldn't make it to your appointment. Withdrawal seems to throw kinds into the most common things we did before with no issue or concern. It gets so tiring after a while.

I hope you are feeling better now. I think the worst part is how it waxes and wanes. It seems to make it worse though the good days may give us hope, the bad ones knock us for a loop.

 

Thanks, Starlitegirl.

 

The waxing and waning is crazymaking! Mine is a daily pattern which makes it impossible to get any traction. I've had decent afternoons and evenings the past couple of days. Fairly lengthy chats with girlfriends the last 2 nites. Felt ~dare I say? ~ NORMAL. Talked about going to see holiday lights and Disneyland and it didn't seem unreasonable. Then woke with the hellish heart pounding anxiety and feeling that I am dying. I dealt with this much better before my hospital stay for cardiac monitoring in July. My heart rate and/or blood pressure were bottoming out when I got that pounding (not racing) then. Took stimulant as soon as I woke and it really calmed me. I'm a paradox. .

 

Made reservations to go back east. Not certain that's a good idea, but the situation I'm in is deteriorating farther. Ended up booking 2 tickets on same flight when Cheapo Air said my credit card didnt go through and their link to correct it was down. Grabbed tkt on another site and then got message from Cheapo that the first one went through also. ARGH! I think they're in kahoots with the pharmacies.

[alexjuice]

Barb,

I've realized the importance of vitamin D in immune issues, my own. From everything I have read, autoimmune patients with more optimal vitamin D levels feel better and tend to do better as well.

 

Also, a bad reaction to D can be instructive as well.

 

I am, not a doctor, and disagreement abounds as to what # is optimal for D. I'm shooting for 45 ng/ml. Mine has mostly been in the hi-20s, lo-30s. If you find yours out, I'd love to know.

 

I'm sorry you didn't get a chance to make your endo appointment. How have you been spending your days? I've been alternating between guarded optimism, out right pessisism and not giving a damn what happens so long as SOMETHING HAPPENS.

 

In the last two months, other than a handful of doctors, I have literally only spoken with my mother and sister.

 

best,

alex

[alexjuice]

Barb,

Are you taking an supplements?

 

I apologize if seems I am pestering you.

 

Alex

[starlitegirlx]

 

I'm sorry you couldn't make it to your appointment. Withdrawal seems to throw kinds into the most common things we did before with no issue or concern. It gets so tiring after a while.

I hope you are feeling better now. I think the worst part is how it waxes and wanes. It seems to make it worse though the good days may give us hope, the bad ones knock us for a loop.

 

Thanks, Starlitegirl.

 

The waxing and waning is crazymaking! Mine is a daily pattern which makes it impossible to get any traction. I've had decent afternoons and evenings the past couple of days. Fairly lengthy chats with girlfriends the last 2 nites. Felt ~dare I say? ~ NORMAL. Talked about going to see holiday lights and Disneyland and it didn't seem unreasonable. Then woke with the hellish heart pounding anxiety and feeling that I am dying. I dealt with this much better before my hospital stay for cardiac monitoring in July. My heart rate and/or blood pressure were bottoming out when I got that pounding (not racing) then. Took stimulant as soon as I woke and it really calmed me. I'm a paradox. .

 

Made reservations to go back east. Not certain that's a good idea, but the situation I'm in is deteriorating farther. Ended up booking 2 tickets on same flight when Cheapo Air said my credit card didnt go through and their link to correct it was down. Grabbed tkt on another site and then got message from Cheapo that the first one went through also. ARGH! I think they're in kahoots with the pharmacies.

 

Damn, that last paragraph just screams NIGHTMARE. I hope it all works out getting your money back.

 

The waxing and waning is the absolute worst. Right now I'm in a hell round of the cycles. I feel like I am back a few months ago needing more klonopin, having more tremors, all sorts of stuff that I just keep tolerating and sometimes crying about. So I know what you feel like. It's so disconcerting and disillusioning. You think you are moving forward and then get knocked back right on you ass. As I ponder it, I think the cycle part of it is the worst part. There's some about it that is cruel and sadistic and drains you of your hope and will and even strength. How many times can a person go through these cycles before they just break? I think I'll give it a new code abbr. WWR - wash, rinse, repeat - cycles of a laundry machine because man, do I feel like I'm being taking to the cleaners every time!

 

I hope all the ticket stuff works out and that you have better days with less WWR action.

[Karma]

Barb,

 

I'm sorry to hear things are deteriorating at home. I had hoped the your hubby would be able to support you. You need to be in a safe, supportive environment where you can find your healing path.

 

Where back-east are you going? Back to PA or somewhere else? I support you in getting out of your current environment and getting into a more supportive environment, but I worry that if you cannot make a doctor's appointment that flying will be more of a challenge.

 

Keep us posted and know that I am sending you love, light, and healing energy.

 

Karma

[starlitegirlx]

Hi barb! I wanted to stop by and say hello. I hope you're doing well.

[Barbarannamated]

Barb,

Are you taking an supplements?

I apologize if seems I am pestering you.

 

Alex

 

Sorry, Alex, I missed this message. Not pestering at all. I wish I could harness all of the positive energy from everyone. I feel like change is going to have to come from external source because I am emotionally drained. I think I could rally the physical energy if I had the emotional reserves or motivation.

 

I'm not currently taking any supplements. I HAVE 1000s of dollars of supps I've purchased over the years from various doctors, naturopaths, chiros, health stores. I've not noticed any significant response either way except with:

~ l- tyrosine which acted like speed on a few occasions (prior to w/d). Not a good energy.

~ Joint pain supps back in 90s for TMJ and head/neck pain helped

 

I tried liquid Vitamin D3 after reading your message and did not notice anything negative. Would the "instructive" response you referred to be evident w/ one dose?

 

I found an expired bottle of AdrenaSense (Natural Factors) and took low dose the past few days. I suspected adrenal problems years ago although I never went through the belly fat stage associated with high cortisol. Endocrinologist I was going to said my adrenals were fine.

 

I'm afraid to take supps or new drugs, especially after bad reactions to hydrocortisone (much worsened depression with suicidal thoughts upon wakening) and Prometrium progesterone which i can only describe as a "very bad trip" to a very dark place I had never been before. It happened within hours of 1st (and only) dose. Vivid nightterrors, also, and I rarely recall any dreams. Docs insist I take progesterone to oppose the estrogen I take even though none can explain my reaction to Prometrium which each one has claimed is a 'natural progesterone'. I realize it's a liability thing with them. That rationale seems no different than doctor trying another SSRI after patient had suicidal reaction to first. I never had these dark thoughts before being on drugs for years and then with hydrocortisone and Prometrium. I filled a new script for bioidentical progesterone but haven't taken it.

 

It's been suggested that low blood sugar in morning may be playing in. Goes hand in hand with cortisol. I need to get a blood glucose meter.

 

Rambling Tangent. Sorry.

[Barbarannamated]

I'm sorry to hear things are deteriorating at home. I had hoped the your hubby would be able to support you. You need to be in a safe, supportive environment where you can find your healing path.

 

Where back-east are you going? Back to PA or somewhere else? I support you in getting out of your current environment and getting into a more supportive environment, but I worry that if you cannot make a doctor's appointment that flying will be more of a challenge.

 

Not getting out is a definite possibility. Usually, if I get out, I can find the physical energy. The emotional energy is a different beast and the one present in the morning until about noon. It's a black tunnel I can't see out of and so any effort toward living seems futile. Vyvanse does help me see out of the tunnel and stop ruminating and dark thoughts. It was what brought me out of depression (after years of serotonergics, benzos and neuroleptics that put me there) but my psychiatrist had me on 2x max daily dose (70mg. bid) for awhile plus short acting stimulants to help if needed. I haven't tried that dose again; once daily dose isn't lasting. I know this is not good and have no idea if my endocrinologist would prescribe that way. My other choice is to grovel to see my old psych again. Also, he told my husband (also his patient) that he would write a letter to document what helped me for me to give to a new doc, but I haven't pursued that. Being trapped in any of these meds is bad. Being trapped by highly controlled ones that few doctors will even prescribe is HELL. Further complicated by doses out of prescribing range..

 

I don't know if I'm making this more complicated in my head or not. Probably. I tend to do that.

[alexjuice]

I'm not currently taking any supplements. I HAVE 1000s of dollars of supps I've purchased over the years from various doctors, naturopaths, chiros, health stores. I've not noticed any significant response either way except with:

~ l- tyrosine which acted like speed on a few occasions (prior to w/d). Not a good energy.

~ Joint pain supps back in 90s for TMJ and head/neck pain helped

 

I tried liquid Vitamin D3 after reading your message and did not notice anything negative. Would the "instructive" response you referred to be evident w/ one dose?

 

I found an expired bottle of AdrenaSense (Natural Factors) and took low dose the past few days. I suspected adrenal problems years ago although I never went through the belly fat stage associated with high cortisol. Endocrinologist I was going to said my adrenals were fine.

 

Hey Bar-

 

I know exactly what you mean about being scared to try a new drug or supplement.

 

As for the D, it is illustrative of tolerance to the supp, which is a good thing. Some liquid D's are derived from soy, and many AI patients are soy intolerant.

 

In my case, I noticed over time that I vit D made my veins inflamed, or rigid in various places. However, it didn't happen right away, it took a few doses. Then I had to stop, even though my D was not very high, because then a single drop caused pain and this calcification thing.

 

I've been trying to understand it for a while and found some interesting hypotheses around the web. I was curious if you were able to tolerate the D.

 

I am trying to get my D up, in spite of my bad reactions to it, since everything I've read said D levels around 40-50 may be most beneficial for infected and, particularly, autoimmune patients.

 

Hang in there. BTW, I am so exhausted tonight. I left the house for 6 hours a lone today and am flat wiped.

 

Alex

[Skyler]

Hey Barb, I just saw this on Facebook and immediately thought of you.

 

Peter R. Breggin, MD

What is 'Medication Spellbinding'? This is #3 in psychiatrist Peter Breggin's video series: Simple Truths in Psychiatry

 

 

[Barbarannamated]

So true in my home x 2. It's like there are 4 people in my marriage and I've never met one of them since husband has been drugged the whole time. I also question my judgment about all choices now wondering if I'm playing the blame game Breggin speaks of.

 

Thanks, Schuyler.

[starlitegirlx]

I love that video on spellbinding. And that doctor is awesome! I'm glad someone is telling the truth. I wish more of these jerks would.

[btdt]

 

Are you still very tired? Barb will your adrenals reverse themselves in time. My understanding is that they do....

 

Nikki,

 

My doctor believes it's the autoimmune component /autoantibodies that are causing the white matter/brain damage that showed on MRI. So, I'm changing gears a bit as I learn THEATRE it's an immune system problem that has caused the multi-system problem (brain, thyroid, adrenals, liver, etc). To my knowledge, the damage cannot be reversed and hormones are used to replace those not being produced naturally.

 

There is no cure for autoimmunity. Treatment is aimed at slowing the progression and attack by auto-antibodies using immunosuppressants.

 

The structural damage of the brain white matter is not reversible and is progressive because it is due to autoantibodies, so slowing it is my primary goal. It's a very new field, mostly research, and the only treatments are immunosuppressive drugs (steroids).

 

I don't know if it's just coincidence that the hormone used to replace adrenal hormone (hydrocortisone) is also the drug used as immunosuppressant or if those two effects are related.

 

My physical energy is a bit better. It's been VERY eye opening to learn of the mental effects caused by structural changes in the brain - severe apathy, *altered state* (may be sundowning), and depression. Hallucinations are not uncommon, though I havent had. I suspect the "Alice in Wonderland" type events I had back in June were part of this.

 

Sorting through labwork from past, it appears that autoimmunity first appeared with a lupus positive titre in mid 1990s, possibly triggered by Zoloft. Neurological lupus.

 

Scary but fascinating.

 

Hi I am btdt. I have had worsening mri reports the latest quite recently. You seem to be way ahead of me on this topic and I am here to learn. It is tricky for me to understand it and I do tend to forget what I have learned. I am taking this in very small bits and would like to ask you how this immune response has presented itself as liver thyroid involvement?

I realize you have likely posted all this information on this site at some point and do thank you in advance for the spoon feeding I am asking for just now. If the information is here already a link would be good.

In case you have not found all there is to find on this subject a couple of links can be found here:

http://www.topix.com/forum/drug/effexor/TSDEC0AC9GNE1P5CH#lastPost

thanks B

[Barbarannamated]

Hi I am btdt. I have had worsening mri reports the latest quite recently. You seem to be way ahead of me on this topic and I am here to learn. It is tricky for me to understand it and I do tend to forget what I have learned. I am taking this in very small bits and would like to ask you how this immune response has presented itself as liver thyroid involvement?

I realize you have likely posted all this information on this site at some point and do thank you in advance for the spoon feeding I am asking for just now. If the information is here already a link would be good.

In case you have not found all there is to find on this subject a couple of links can be found here:

http://www.topix.com/forum/drug/effexor/TSDEC0AC9GNE1P5CH#lastPost

thanks B

 

Hi B,

 

Thanks for contacting me. I'm so sorry you are going thru this, too. When I first got the MRI, I felt an odd relief, but that has since changed to regret that I know there is damage that is not treatable. It was easier to believe I was suffering from withdrawal that would resolve in time. My symptoms became very apparent when I tapered (sloppily) Pristiq over approximately 8 months. I have the perceptual disturbances badly: DP/DR, dissociation, "twilight zone" feelings and an odd inability to talk to people I know on the phone. I recently decided this is somehow related to dissociation and DP/DR. I REMEMBER people, but have a hard time connecting to emotions about them. There are several threads I started and will try to link them. A few about symptoms are: Phone anxiety, dissociating to cope, time warp, APATHY / lack of motivation, Adrenal / Addison's, In hospital for cardiac monitoring (I noticed mention of HYPOtension in the link you posted- I have HYPOeverything!).

 

"Bizarre" is the only way to describe my life since tapering Pristiq.

 

I did, however, have what was definitely my first WINDOW a few days ago! 18 months post last dose. I woke up with a completely different "awareness". My first conscious thought was "WOW! I feel light, different, lack of dread (had been easing up)". The entire day was different in a way that's hard to describe. Lack of doom. The sky had opened up a bit from the black clouds. I didnt do much during the day, but did cook dinner (unusual for me even in good times). I didn't feel like death was imminent. I have taken Vyvanse (stimulant/dopamine agonist) off and on which helps somewhat. However, on my window day, I felt no need for it to escape the doom. I did recall my dream (nothing of note) just before waking, which is unusual for me as dream recall has not returned regularly yet. I don't know if that was related in any way.

 

The window lasted a full day and darkness returned along with severe weather migraine the past few days.

 

My autoimmune condition is Polyendocrine Deficiency Syndrome 2 plus NAFLD (non alcohol fatty liver disease) and Premature ovarian failure, Hashimoto's (dx in 1996), Addison's adrenal disease, Sjogrens, Raynaud's, etc, etc.

Trying to piece together my history with symptoms and labwork, it appears I had a (possible) drug-induced lupus autoimmune reaction (Zoloft) although that was never officially diagnosed. Two doctors missed positive FANA PATTERN (antibodies) and very high CPK enzymes (muscle, cardiac) in 1997. I'm not sure if diagnosis would have benefitted me or not, in retrospect. I read a statistic recently that mortality from lupus has INCREASED significantly over the past decade despite all of the new *wonder drugs*.

 

It's very convoluted and I have had trouble finding anyone to offer a 2nd opinion on all of the autoimmune, endocrine conditions and the effect of psych drugs/withdrawal on them. I reacted badly to hydrocortisone (bad depression) for the AI and adrenal conditions and tapered off. It seems the morning dread slowly lightened up after that, but I'm not certain. There's been significant confusion with my labwork results and interpretation .

 

I'm proceeding with extreme caution. I will post links asap. I also have correspondence from one of the researchers on withdrawal that I'd be glad to share with you in a pm. He was very nice but didnt have any different suggestions for me. I recently got in touch with an Autoimmune/lupus researcher at University of Texas. I don't know if that will lead anywhere or if he knows anything about psych drug withdrawal. I am encouraged that he has only one minor tie to pharma industry (per Dollars for Docs) and appears to use very old drugs for lupus (as opposed to new $$$ biologics being used by most rheumatologists).

[Nikki]

Hi Barb....

 

I am happy that you had that window. Could be the beginning of more

 

Many Hugs

[Karma]

Hi Barb,

 

I know this is a tough time of year for you, but wanted to stop by and say

 

Someone is thinking of you with well wishes for continued improvement in your health and the prayer that you find a safe, supportive environment to heal in, whatever that looks like for you.

 

Love and light,

Karma

[Skyler]

Hi Barb, celebrate the solstice? I love wreaths and candles, the non materialistic pleasures of the season. Bringing in the harvest and getting ready for spring. Much Joy and Peace to you this holiday. LOL, Christmas will soon be past.

[areyouthere]

Hi Barb!!! Did you know that the hours of daylight start to increase now? For me that sometimes is the only consolation this time of year....... I hope that you are doing ok right now. Thinking of you and everyone else on this forum....

 

Merry Christmas and a Happy Year ahead.

 

RU

[Barbarannamated]

Thanks Karma, Skyler and RU. Your support, friendship and good wishes are very special to me. I hope for a better year for all of us.

 

I will probably go to husband's sister's home although I have been low and don't want to inflict my mood on anyone. I usually am better when with people, though. I hope that holds true.

 

Got word that my sister is in hospital after another OD. I thought she was on psych floor, but now believe she's on the medical floor. It's very disturbing to think of the grief in my family, especially my father. He's created the mess over many years and I have anger about that, but it breaks my heart to know he's alone now.

 

I have 2 impacted teeth and have to get one removed in the next few days. It'll be full oral surgery with general anesthesia. The tooth has been nursed along for many years so I'm not surprised. Penicillin is helping the pain. I dread dental work because of my TMJ. The dentist took 1 Xray and that brief jaw opening caused significant neck pain. I did well with wisdom teeth extractions under anesthesia years ago. Surgeon told me he uses Versed, fentanyl, Propofol, and a steroid for inflammation in the anesthesia.

 

Days getting longer... I like that!

 

Love and best wishes to all!

 

B

[alexjuice]

Surgeon told me he uses Versed, fentanyl, Propofol, and a steroid for inflammation in the anesthesia.

 

I had a colonoscopy a few years ago and they tried the benzo and the narcotic. But they didn't work. Weird reaction. I came back and they used the propofol which was very effective.

 

Does your know about your AI issues? Since you are such an atypical case, I'd ask some questions about any steroid treatments.

 

best,

Alex

[areyouthere]

 

Surgeon told me he uses Versed, fentanyl, Propofol, and a steroid for inflammation in the anesthesia.

 

I had a colonoscopy a few years ago and they tried the benzo and the narcotic. But they didn't work. Weird reaction. I came back and they used the propofol which was very effective.

 

Does your know about your AI issues? Since you are such an atypical case, I'd ask some questions about any steroid treatments.

 

best,

Alex

 

I just love talking about colons on Christmas morning. This is the BEST!!!

 

Anyway, Alex, interesting you mention this. People talk about how they "don't remember a thing" whilst having a colonoscopy. I don't know if it was the xanax or what, but they gave me drugs that at least made it so the procedure didn't hurt ( although it made the phrase "Blow it up your a@@ " come to life for me) I was awake and was able to watch on the monitor the whole thing. I can actually say that I looked up my own a@@ once.

 

I HATE dental work of ANY kind.....it's always turned out ok, and I'm crossing my fingers for you Barb, but Man, it ain't fun!!!

RU

[Skyler]

Hello on this the day.. Good Solstice to you!

[Nikki]

Hi Barbara...

 

Sorry about the oral surgery. No one wants to have that. However when the healing starts you'll be glad you got it done. I have to go the the Dentist myself.

 

How was it at your sister-in-laws?

 

Barb it has to be so much better for you to live away from your family. Very sad about your sister. In order to take care of yourself, it's just better not to be involved in the problems of others. I hope she comes out of it and seeks recovery. All you can do is pray for that.

 

Lots of cyber hugs

[Skyler]

Barb, I'm sorry about this problems with your sister. It has to be unsettling, to say the very least, to have someone you shared so much with in the past turn on you the way she has. Try as we might, when people express hatred, in whatever form, it consumes energy.. I hope this crisis resolves soon so you can pull your thoughts free, Skyler

[Barbarannamated]

How was it at your sister-in-laws?

Barb it has to be so much better for you to live away from your family. Very sad about your sister. In order to take care of yourself, it's just better not to be involved in the problems of others. I hope she comes out of it and seeks recovery. All you can do is pray for that.

 

Thanks, Nikki.

 

Christmas with the inlaws was very nice. Until I listened to a voicemail from my father that sent me into a tailspin from which I have not yet recovered. I knew I shouldn't listen to it and put it off for hours, until Christmas night. He called to wish me a happy holiday and request that the 3 of us (he, my sister and I) get together to "discuss things" because "I'm (dad) not getting any younger". I've been trying to discuss this for many years and have been ignored and/or lied to repeatedly. He's created a completely dependent, potentially dangerous, 53 yo woman-child drug addict of my sister and wants to know I won't abandon her when he's gone. He's lied to me and my husband many times about wills, executers, plans, and completely ignored my many requests (including written letter) for information. Or he honestly doesn't remember what he last told us. End result is the same: Im left with no info and a ton of stress.

 

Dad suggested that he and sister come out to California if I can't make it to Pennsylvania. Husband does not want her near us and neither do I. IF any meeting takes place, it will be with lawyer present. This sounds crazy to me as I write it. We're not a wealthy family. Comfortable, middle class, 1800 sq.ft. house in a depressed PA town. No estate.

 

My heart is racing just writing this message!

 

I never talked to him directly, but confirmed where my phone anxiety originated.

 

Interestingly, he never mentioned that my sister was in the hospital with another overdose. There are alot of elephants in the room.

 

Yes, Nikki, it is good that there is a continent between us although the pain can transcend those miles in an instant. It would be exceedingly difficult to see out from the dysfunction if I lived closer and interacted with them regularly. They are so intertwined that I can't have a relationship with only dad. They are a unit in my mind.

 

Thanks to all who suggested I attend Narc Anon or groups for families. I definitely need support.

[Barbarannamated]

Barb, I'm sorry about this problems with your sister. It has to be unsettling, to say the very least, to have someone you shared so much with in the past turn on you the way she has. Try as we might, when people express hatred, in whatever form, it consumes energy.. I hope this crisis resolves soon so you can pull your thoughts free, Skyler

 

Thanks, Skyler.

 

As I just responded to Nikki, the problem is not just with my sister, but with father and sister as a unit. She is so dependent on him that he can't be away for more than a few days and I can't separate them in my mind. Is that the nature of an enabling / codependent relationship..? (Not sure what correct terminology is)

 

And they are my only blood family. I am feeling the absence of 'circle of life' more acutely now in withdrawal and since mother's death.

 

I appreciate your support. Why didn't I find you about 20 years ago??

[Barbarannamated]

Going downhill. Have alot of back neck face head pain again. The kind that put me on disability in 2001. Havent had tooth removed yet.

 

I get out of bed for a cup of coffee for about an hour then in bed the rest of the day until bedtime. I sometimes get up to eat, but few regular meals.

[starlitegirlx]

Going downhill. Have alot of back neck face head pain again. The kind that put me on disability in 2001. Havent had tooth removed yet.

 

I get out of bed for a cup of coffee for about an hour then in bed the rest of the day until bedtime. I sometimes get up to eat, but few regular meals.

 

I'm sorry you're having such a hard time. Hopefully it will pass. I hope it's just some kind of wave that passes quickly. Does sleep help? I've found sleep to be the best thing for bad days but it depends on if I can get to sleep.

 

My thoughts are with you. I hope this passes and you feel better quickly.

[Barbarannamated]

Thanks, Starlitegirl.

 

Ive been this way for most of the last year (in bed). The pain is new in the past few weeks. I had many months like this (bedridden by pain) since neck injury 1993.

 

Life has been very, very long. Weird thing... even as a teenager, i didn't foresee myself living to an old age, having a family, or even marrying. It wasn't a lifeplan that I consciously thought about, but a complete inability to see myself in those roles.

 

The call from my father on Christmas Day stirred the feelings of death. We're all (he, sister, me) waiting to die. I don't know why this runs so strongly in my family. It's an awful way to live.

[Sparrow]

Really sorry to hear you're having a bad time Barb. Pain anywhere above the neck seems to be so much more intense, or maybe just harder to ignore, than elsewhere in the body. Are you able to stay distracted for any part of the day (reading or whatever)?

 

Sparrow

[Barbarannamated]

Really sorry to hear you're having a bad time Barb. Pain anywhere above the neck seems to be so much more intense, or maybe just harder to ignore, than elsewhere in the body. Are you able to stay distracted for any part of the day (reading or whatever)?

 

Head and neck pain definitely puts me over the edge, maybe because i have a long history with it. I swear i can feel it in my sleep and wake with worse dread and depression. I can feel that I'm bruxing, too. May be the tooth.

 

I've been watching Gilmore Girls videos - again. Background noise, mostly, although it's a good, smart show. I always catch new literary, cultural and music references despite watching it for the umpteenth time.

 

Thanks, Sparrow.

[starlitegirlx]

Thanks, Starlitegirl.

 

Ive been this way for most of the last year (in bed). The pain is new in the past few weeks. I had many months like this (bedridden by pain) since neck injury 1993.

 

Life has been very, very long. Weird thing... even as a teenager, i didn't foresee myself living to an old age, having a family, or even marrying. It wasn't a lifeplan that I consciously thought about, but a complete inability to see myself in those roles.

 

The call from my father on Christmas Day stirred the feelings of death. We're all (he, sister, me) waiting to die. I don't know why this runs so strongly in my family. It's an awful way to live.

 

I think when life brings you so much suffering and so many problems with so little actually going well or when it seems like most of the time it's suffering with rarely any passion or even reason to push through the suffering, it just becomes natural. I'm waiting to die as well. I know things may change for the better, but the odds are stacked against that, especially now that I have to stabilize on klonopin then begin my taper of that which may be a few more years of suffering. Every time I hear of someone dying, I wish it were me. I am actually sad it was not me. How messed up is that? But after years of doing my best to accept my life situation then having so many curve balls thrown at me that bring new lows to what I have to accept, I am just going through the motions waiting to die. I sometimes wonder what it is like to live a life where that doesn't cross you mind, where you basically have a life you don't have to go out of your way to accept, or where things go well, you're healthy, you're basically content, and you are living life out in the world, doing things, experiencing it rather than waiting to die like us. It all makes me terribly sad and I wonder what the purpose of it is? I sure hope there is some grand purpose or design and that all this wasn't just bad luck in a crap existence that is ultimately meaningless.

[alexjuice]

I have felt the same lately. I am probably not close to death but it feels hopeless. I feel that I can't get back my health and there is nothing left but suffering and watching the sand drip through the hour glass til timesup.

 

It's terrible.

 

Barb, I'm sorry about the state of your family of origin. I say you've earned the right to do whatever you think is best for you, no explanation necessary. I don't know what this is, maybe it's telling your family members that it's too stressful being fearful of their calls. Ask them to only contact you via postal mail. I don't know exactly. But you get to do what's right for you right now, whatever that is.

 

BIG HUGS. I'm sad for you because you're a terrific person. HUGS AGAIN.

 

Try to hang in there.

 

Alex