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

October 20, 2012

Hi Barb,

Just wanted to let you know I'm thinking about you and hoping you're feeling better.

October 23, 2012

I need a plan.

Two years ago, prior to tapering off of Pristiq, I was doing fairly well. I somehow invented something to do every day, even if just drive around enjoying music. I supposedly had these brain lesions for years. It doesn't make sense that they alone are suddenly causing symptoms that coincide with and mimic withdrawal. Serotonin effects vasculature and platelets so makes sense that a change would cause symptoms.

Ive been unsuccessful in getting a second opinion or even someone to assess my MRI which I wish I had never gotten. I was with a friend when he had MRI in hospital... neurologist said MRI didn't show anything. Later, when no docs were around, an RN wrote a note copying the wording from his MRI about white matter hyperintensities and gave it to us as if to say "here's what the doctors didnt tell you". Everything is subject to interpretation.

Something is just not adding up. The steroids were making me worse. Until I can get a very good explanation of what is going on as well as input from 2nd opinion that I trust, my plan is to do no further treatment aside from things that help me to feel better.

Maybe I'm in denial or throwing the baby out with the bathwater, but I've been burned by medicine and I'm not blindly following additional medical advice again.

That's my plan.

about me · October 23, 2012

my plan is to do no further treatment aside from things that help me to feel better.

Maybe I'm in denial or throwing the baby out with the bathwater, but I've been burned by medicine and I'm not blindly following additional medical advice again.

That's my plan.

Excellent decision. I don't see where you are making any irreversible decisions and if that baby shows up again, simply put in a course correction.

October 29, 2012

Hi Barb....

If what you are taking is not helping to make you feel somewhat better, I agree why bother. I don't understand everything about your situation, but I do know that the steroids were to alleviate or put a stop to some of your troubles.

Do you know anyone who knows a trustworthy doctor. Not a doctor with a hyped up name or practice, someone who can take the time to read through your reports and come up with something?

Hugs

October 30, 2012

Hey Barb,

Dealing with life, I haven't been around much. I can't begin to tell you how much my heart goes out for you. I wish I had the magic wand or the answer of whatever. Or could even give you a hug and a chat with you in real life.

You're an amazing person. I was only thinking of you yesterday when I thought back to Dec 3, 2011 which was stood out for me because it was an oasis night - a night where I felt normal. I went out alone on a weekend evening with only my laptop as company.

This was the place. I used to come here in college. A DJ played some music and the college kids, hippies and hiply dressed surrounded me while I tried to do some work on my computer -- back when "work" was something that took up any of my time...

Posted Image

But no work really happened. I breathed it in, when that was possible. I drank the drinks, when that could happen.

...Mostly, though, I chatted on this thread with you. It was a special night for me, to be out among the people on a nice night and not bogged down in the youknowwhat. It meant a lot to bounce back and forth into the forum and write a bit with you, Barb. It was a wonderful connection for me as someone who has been alone so much. I can imagine how alone you feel right now. But just hang in there, Barb.

I haven't been back to this place or any place like it since December 3. But who knows. If someday I am back at this place or some other palce I don't really belong with a DJ playing endoftheworld music at close to midnight, I will think of you and look for you to chat me through it once more. You're a special person, Barb. Okay. That's how I feel.

Hang in & let's just see.

love,

Alex

November 6, 2012

I've been having a very tough time over the last several weeks, possibly due to hydrocortisone dose increase, which i then decreased. Feeling a bit better yesterday and today and wanted to check in and say THANK YOU for the support and very special visual. I will write more when I'm able. Need to NOT focus on myself right now.

Love you all!

November 6, 2012

Hi Barb

Really sorry to hear that. Hope things turn around for you soon

Dalsaan

November 6, 2012

Hey Barb,

I'm glad you checked in, I've missed you so. I hope your days get better and better.

Love you and many hugs,

T

about me · November 6, 2012

I've been having a very tough time over the last several weeks, possibly due to hydrocortisone dose increase, which i then decreased. Feeling a bit better yesterday and today and wanted to check in and say THANK YOU for the support and very special visual. I will write more when I'm able. Need to NOT focus on myself right now.

Love you all!

Just so you know I'm reading your thread!!! Hope you feel some better soon.

For a good escape... check out the Calling the Midwives... great stuff. ~S

November 6, 2012

For a good escape... check out the Calling the Midwives... great stuff. ~S

At first glance at above, i saw "for great escape...check out the Maldives". OOOKAY!! Sounds great!

November 7, 2012

Hey Barb

Sorry to hear you are having difficulty with the hydrocortisone doses. What I've found is that you have to taper it, but not quite the same way we taper SSRIs, but by small, steady amounts. When I make changes I usually increase or decrease by no more than 2.5 mg at a time and give it 5 days. If you are decreasing, you might want to give it two weeks for each reduction.

I think of you often and I'm sorry I haven't been by your thread more often lately. My job ... that I am very grateful for ... is keeping me very busy. Sending love, light, healing energy, strength and courage.

Karma

November 7, 2012

Just stopping by to see how you're doing.

Hugs

B

November 7, 2012

Hi Barb...

I haven't seen you on FB. Barb, prednisone for me is stimulating, so stimulating that it causes anxiety. Has anyone recommended prednisone?

Are you waiting to see anymore specialists or are you working at this on you own? You have so much information, more than a Doctor I think.

Do you think a vacation may be something that can boost your spirits? Maldives?????

Hugs and more Hugs

Celeste

November 7, 2012

Sorry your meds are making you feel so crummy. I had to put up signs around my house when I was taking certain drugs like steroids that said, "Remember it's not you...it's the prednisone" and "This insomnia is from the steroids". I was constantly clock watching (no sleep/the jitters) and so that's where I put most of my signs.

Thank you for stopping by my Intro blog. I appreciate you posting and helpful comments.

PBS Masterpiece Theater's "Midwives" is a precious little series and pleasant to watch.

I hope you feel better soon.

November 8, 2012

Hey Barb,

Hope you are having a good day today.

Wanted to wish you well before I turn in for the night. My day's been long and my arms not much for typing.

best as always,

Alex

November 11, 2012

Thanks everyone. Had a few decent days, then hopelessness set in again, magnified by my living situation and isolation. I can't seem to regain my footing and move in ANY direction. I have little physical energy and even less emotional energy or will.

Had a disturbing appointment with endocrinologist 2 weeks ago that I haven't been able to talk about. I have not found anyone able to offer an informed 2nd opinion. I have 2 Rare and/or unacknowledged conditions that are intertwined: Addison's Disease/Polyendocrine Syndrome and withdrawal. I corresponded with Dr. G Fava (psychiatrist) and his wife Dr. Sonino (endocrinologist), in Italy (research in Scientific Journals section). They were kind and sympathetic, but said the field of withdrawal is emerging and reserved comment on my particular case.

I've joined the Adrenal Support Yahoogroup Karma suggested but have been unable to get copies of labwork from hospital stay in July when they did the ACTH challenge. The hospital said it was normal but endocrinologist said "adrenal failure/Addison's" based on baseline cortisol level the hospital nurse told my husband. They would not copy any records and never sent records to endocrinologist when requested. Endo ordered more labwork that included TSH but not any T3 (free or total). Reverse T3 was not an option on lab form and I've never heard him mention it. These seem like red flags.

He upped my estrogen to a pharmacologic dose for mood and prescribed Wellbutrin which I have not filled. I've told him of the situational factors, but he does not address in any way.

I hate being a broken record of negativity. My energy and motivation are so low and I'm working on this alone. Husband doesn't question endocrinologist.

I've wanted to write an appropriate "thank you" for Alex's very special post earlier. I can't find the words to adequately express how deeply it touched me.

November 11, 2012

Hi Barb

Here is a nonprofit, public organization that has some information about getting your medical records https://www.cdt.org/getting-your-medical-records.

This kind of stuff makes me nuts :blink: . I would demand a copy of my entire medical record from the hospitalization and give them a time frame in which to deliver it. Do you know any attorneys that would be willing to write a letter requiring the release of a copy of your medical record - they tend to respond when an attorney is involved. Note the hospital is the custodian of the medical record, but you have a right to a copy.

It sounds like your endo is following the "standard of care" ... which unfortunately tends to leave some (IMHO) still sick - although it protects the doctor. I sometimes get fed up with my doctor's and their speed (or lack of speed) and order my own labs (Oh, didn't I recently do that? Why, yes I did and when I told the pokey lab about it they were dumbfounded - I pointed out that I am the customer and I have choices. Ok, help me step down off my soapbox). Depends on your financial resources, but a Free, T3 runs about $70 out of pocket and the Reverse, T3 runs the same.

Barb, I want you to feel better, consistently, so much it hurts :unsure: . I wish I was there so I could write the letters and do the follow up for you. It is really unfortunate that your hubby isn't willing to help ... how difficult can it be for him to write a letter to get you a copy of your medical records?

Sending you love, light, healing energy, strength and courage.

Karma

about me · November 11, 2012

Barb, I want you to feel better, consistently, so much it hurts . I wish I was there so I could write the letters and do the follow up for you. It is really unfortunate that your hubby isn't willing to help ... how difficult can it be for him to write a letter to get you a copy of your medical records?

Sending you love, light, healing energy, strength and courage.

Karma

Barb, it's a federal law that the hospital has to furnish you with a copy of your record upon a written request. Hospitals have patient advocates, ask the switchboard to connect you, and if this does not happen, contact the office out of which the hospital social workers do their thing. You can get the records.

November 12, 2012

Barb, I want you to feel better, consistently, so much it hurts . I wish I was there so I could write the letters and do the follow up for you. It is really unfortunate that your hubby isn't willing to help ... how difficult can it be for him to write a letter to get you a copy of your medical records?

Sending you love, light, healing energy, strength and courage.

Karma

Barb, it's a federal law that the hospital has to furnish you with a copy of your record upon a written request. Hospitals have patient advocates, ask the switchboard to connect you, and if this does not happen, contact the office out of which the hospital social workers do their thing. You can get the records.

Thanks Karma and Schuyler.

We've been through so much medicolegal BS since 1993 when I had work injury (14 years of litigation) and lupus reaction to Zoloft that we're both worn out. Every prescription refill turns into an event. Hospital doesnt follow through. I'm so tired and defeated. Husband does do some things, but is feeling the hopelessness and defeat, too. We've both been very drugged for nearly 20 years. I can't help but think that's playing in.

When I read of all that others do getting regular labwork, seeing multiple doctors and cooking special diets, I always think "HOW do you keep up, find the energy??" And sometimes I wonder if we have a toxic house but have no energy to pursue it and that's hubby's specialty (Occupational and Environmental Med).

I think of getting an Advocate, but will they understand endocrinology and dangers of psych meds and withdrawal or will they believe that all doctors know best?? I had Advocates going thru the Work Comp litigation and they were inevitably in the pocket of someone.

I hate leaving such negative posts, but it's where I'm at right now, especially after my last appointment with endocrinologist. I feel beat up by life. If I survive, it will be despite western medicine.

EDIT: I'm sorry. Having a hard time finding any positives (or neutrals!) right now.

about me · November 12, 2012

I think of getting an Advocate, but will they understand endocrinology and dangers of psych meds and withdrawal or will they believe that all doctors know best?? I had Advocates going thru the Work Comp litigation and they were inevitably in the pocket of someone.

Barb, hospitals have to have patient advocates (also a federal law or some such) to help patients resolve disputes with the hospital. You need to for an advocate to break through whatever log jam is preventing you from getting a copy of your record. It may just be that some some lower level employee has his/her feet dug in for for who knows what obscure reason. You need someone on the inside to follow-through and get a copy of your record to you. See if this link helps, it's about rights for CA residents.

I'm really sorry everything is such a hassle for you, but this is one you should not need to handle further on your own.

about me · November 12, 2012

Hey Barb.. I had not realized that link was for MI and thought it was about patient advocates for general med.. they work in all areas. Sorry about that... but there are laws that cover getting records! If you don't get an adequate resolution, you could call this sort of agency to ask what redress you have. The hospital has to give you records on request.. are you sure they are not saying no for want of a consent form? Did the hospital tell you you need to fill one out before they can give you the records once you leave the hospital?

This is on the page:

The right to inspect and copy the medical record, unless specific criteria are met

In your case there is no reason you cannot have a copy of your record. They are obligated to give you a copy.

~S

November 12, 2012

Hey Barb.. I had not realized that link was for MI and thought it was about patient advocates for general med.. they work in all areas. Sorry about that... but there are laws that cover getting records! If you don't get an adequate resolution, you could call this sort of agency to ask what redress you have. The hospital has to give you records on request.. are you sure they are not saying no for want of a consent form? Did the hospital tell you you need to fill one out before they can give you the records once you leave the hospital?

I assumed it was just someone slacking on the job, something that happens alot these days. Drives me crazy when i have to send a fax multiple times to same number until it is received. This happened with my disability paperwork last year and it was held up. Maddening!

Faxed Release paperwork from endocrinologist office to hospital in July. Endocrinologist never received anything. I have another Records Release to fax to hospital or they said I could go to hospital in person.

We asked for copies from nurse on floor when I was in, but he said he was not permitted to copy any records, even 2 pages of lab results (had appt scheduled with endocrinologist shortly after). I think they have a policy about waiting for records to be reviewed before patient or docs can get copies.

Thanks.

about me · November 12, 2012

We asked for copies from nurse on floor when I was in, but he said he was not permitted to copy any records, even 2 pages of lab results (had appt scheduled with endocrinologist shortly after). I think they have a policy about waiting for records to be reviewed before patient or docs can get copies.

Thanks.

Contact the office through which social workers are assigned... They should be glad to help. how many months is this now? No excuses. Someone it seems dropped the ball.

Barb.. is the holdup you don't want to use the phone?

November 13, 2012

We asked for copies from nurse on floor when I was in, but he said he was not permitted to copy any records, even 2 pages of lab results (had appt scheduled with endocrinologist shortly after). I think they have a policy about waiting for records to be reviewed before patient or docs can get copies.

Thanks.

Contact the office through which social workers are assigned... They should be glad to help. how many months is this now? No excuses. Someone it seems dropped the ball.

Barb.. is the holdup you don't want to use the phone?

No, this isn't a phone issue. I seem to be ok with strangers.

It's an overwhelming feeling of "why bother?"... next to no fight left. It does emerge occasionally and I go on a tear ("must get out/flee my situation", find a doc who understands, etc). It's tormenting.

It's taken 2 weeks and 3 calls from MD to new compounding pharmacy to get them communicating. Doc says he's phoning info in; they say they're not getting.

This is different pharmacy than CVS where I've had many previous problems. Last refill, they filled 2 out of 3 incorrectly. I caught on the spot, but then ran out of Klonopin early because they had shorted me 5 pills. I visually inspect pills to make sure they're correct, but havent counted them before leaving pharmacy. I had a meltdown when I ran out and it was too early to refill over weekend, but the pharmacy was cooperative and gave me the 5 pills.

My mood in previous posts was likely due, in part, to the Klonopin stress on Saturday. Then compounding pharmacy yesterday. If people would just do their jobs..

I'll get the records eventually although, from what I'm reading on Yahoo adrenal patient support group, the labs won't be of much value.

I'm tired, very tired - emotionally more than physically - and most of the time see no purpose in prolonging life with more drugs, especially hydrocortisone which made me feel worse.

Blah blah blah. I feel like a broken record.

EDIT: I also realize much of my mood and hopelessness is still due to protracted withdrawal.

about me · November 13, 2012

EDIT: I also realize much of my mood and hopelessness is still due to protracted withdrawal.

This may be true.. but you are also in a real time depression. You need to be working with a therapist, maybe there is someone who can visit you in your home (geriatric care manager, etc.). I'm very concerned about the level of stuckness you are experiencing as it's making your depression worse. You are in a self-reinforcing loop and there needs to be an intervention that will change the paradigm. Depression can get very severe and you don't want your situation deteriorate further.

To get the medical records.. call the hospital social workers office. One step, one call. There is a simple bureaucratic snafu.. not like the pharmacy stuff.

November 13, 2012

EDIT: I also realize much of my mood and hopelessness is still due to protracted withdrawal.

This may be true.. but you are also in a real time depression. You need to be working with a therapist, maybe there is someone who can visit you in your home (geriatric care manager, etc.). I'm very concerned about the level of stuckness you are experiencing as it's making your depression worse. You are in a self-reinforcing loop and there needs to be an intervention that will change the paradigm. Depression can get very severe and you don't want your situation deteriorate further.

To get your the medical records.. call the hospital social workers office. One step, one call. There is a simple bureaucratic snafu.. not like the pharmacy stuff.

Agree. I just posted to Jemima's thread about my long term stuckness (now total inertia).

Weird thing about disability... it isn't referred to as retirement although it usually is.

Thank you, Schuyler.

November 13, 2012

Unable to post right now, but wanted to drop by and leave a big hug.

Sparrow

November 18, 2012

Small victory today.

Got Klonopin refilled. Before leaving pharmacy, i looked at pill thru bottle and verified the unique "K" cutout design. Check.

Opened bottle to count pills thinking "surely, they can't screw up counting out 15 pills two times in a row.."

Apparently they can. There were 12 pills in the bottle.

The pharmacist finally realized that the pill counting machine was getting caught on the odd design with cutout and miscounting pills.

Mystery solved.

November 18, 2012

Goodness, Barb, you are right to feel like you are surrounded by incompetence. I can't imagine having to count the count to make sure all my pills are there.

DO I HAVE TO DO EVERYTHING. that's how I would feel.

I understand your feeling of whybother, though I'm not in your shoes, but I think Schuyler is on to something. Right now, it's important to not get pushed into the 'She Doesn't Matter' box wherein depression can become the bottomless pit. I also understand that when energy and motivation isn't there, getting a to do list all checked off, is basically impossible.

I am worried about you.

Maybe there is a little thing you can do that might make you feel like you are beginning to get unstuck? Any ideas?

November 26, 2012

Thanks everyone. Had a few decent days, then hopelessness set in again, magnified by my living situation and isolation. I can't seem to regain my footing and move in ANY direction. I have little physical energy and even less emotional energy or will.

Had a disturbing appointment with endocrinologist 2 weeks ago that I haven't been able to talk about. I have not found anyone able to offer an informed 2nd opinion. I have 2 Rare and/or unacknowledged conditions that are intertwined: Addison's Disease/Polyendocrine Syndrome and withdrawal. I corresponded with Dr. G Fava (psychiatrist) and his wife Dr. Sonino (endocrinologist), in Italy (research in Scientific Journals section). They were kind and sympathetic, but said the field of withdrawal is emerging and reserved comment on my particular case.

I've joined the Adrenal Support Yahoogroup Karma suggested but have been unable to get copies of labwork from hospital stay in July when they did the ACTH challenge. The hospital said it was normal but endocrinologist said "adrenal failure/Addison's" based on baseline cortisol level the hospital nurse told my husband. They would not copy any records and never sent records to endocrinologist when requested. Endo ordered more labwork that included TSH but not any T3 (free or total). Reverse T3 was not an option on lab form and I've never heard him mention it. These seem like red flags.

He upped my estrogen to a pharmacologic dose for mood and prescribed Wellbutrin which I have not filled. I've told him of the situational factors, but he does not address in any way.

I hate being a broken record of negativity. My energy and motivation are so low and I'm working on this alone. Husband doesn't question endocrinologist.

I've wanted to write an appropriate "thank you" for Alex's very special post earlier. I can't find the words to adequately express how deeply it touched me.

I'm so sad to see you are having a rough time. It' even worse when you're going it alone or feel like it and when there are other factors that add to the withdrawal recovery like various health conditions. I wish I could make it better for you. It seems like the hardest part is to just not fall into that terrible down cycle mood wise or feel defeated/despondent. Isolation doesn't help, does it? For me, it's helpful to a degree because it minimizes stressful things but then it can turn to 'WTH is the point if this is how it's going to be?' It then adds to the challenges and makes it so much more difficult. for me, it's like a mind trap. I have to avoid those thoughts because the minute I venture into them, I'm trapped and getting out of the cycle is such a challenge.

Anyway, I wanted to post and say I'm thinking of you. You know, as grateful as I am that we have this place to come and people who understand that are compassionate and caring rather than dismissive and don't care to even try to understand, my heart breaks a little at the site of all the new people and new threads in the intro section when I haven't been in a while (like a month or several weeks). Wouldn't it be nice if compassion had a healing quality that we could send out to those we see suffering? I think it there were ever a special power worth having, as cool as some others might be, that would be the one I'd want. Compassion that transforms pain and suffering into healing and well being.

You are in my thoughts. I hope you're feeling better.

November 26, 2012

Hey Barb,

I really hear you about the hopelessness you feel when you take a turn for the worse when you had been doing better. I have suffered this over and over... from the daily cycles to the monthly ones. Remember windows and waves, and figure out if there is anything you can do to improve your situation and isolation. I'm feeling pretty stuck myself and doing my utmost to face my demons, take the bull by the horns. Sometimes the to-do list is so long I despair. So I tell myself, do not hurry, do not stop, and it's OK to take breaks.

And it's OK to fail and feel despair, just get back up again. Relentlessly turn away from the negative! Even tiny things count. A walk, some breathing, a cup of tea, one small thing checked.

You are an incredibly strong person, remind yourself of that!

November 29, 2012

Thanks, everyone, for your messages and encouragement.

I'm doing ok. Nothing much to report. I see my endocrinologist on Thursday and may try to get away for a bit after that. I've felt restricted because of how my prescriptions have been written (30 day max) and then continually messed up. I need to get out of my environment to know what's what.

B

November 29, 2012

Hi Barb

I hope things go well with the Endo tomorrow. I think of your every day and send healing energy every day. Not sure what we are expecting the Endo to do to help, but I hope for something positive.

Karma

November 30, 2012

I just wanted to stop by and say hello and that I hope you are doing well and that thing went well with Endo.

November 30, 2012

How were things at the doc?

I've been thinking about you a lot today. I hope you post how your appointment went.

Last, again I've been thinking, have you had your 25-hydroxyvitamin D checked?

Hang in.

Alex

November 30, 2012

I had to cancel my appointment yesterday. Had a very bad morning and office is about 90 minutes away.

Alex, I had bloodwork done at last appointment which included Vitamn D, I believe, but unsure of which form. Curious as to why you ask about that, in particular? The last few days have been very dreary and that effects my mood immediately and dramatically (Vitamin D related?), unlike Seasonal Affective Disorder that occurs after prolonged lack of sunlight toward end of season (my understanding).

You all are far more knowledgeable about lab testing than I am.

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

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