Wednesday, April 16, 2008

Online and Offline Friends (Part 5)

Yesterday's rant made me and a few others feel good, although I realize this isn't the kind of post that most of you probably like. Still, as I wrote in my response to various comments, since I seem to be one of the few people in this blogging circle who feels that my treatment made me worse rather than better--I believe it's important to share my point of view (Yes, I know I tend to dwell on it, but it's part of my healing process. Maybe when I'm 90, I'll feel like I've written it out of my system).

Today, I was planning on writing more about friends--the "real world" kind--and say that one of the true difficulties of my bipolarity is that I like different kinds of people--dependent upon my moods. But, then I received four comments--one on each post in this series from Paula Joy, who's a bipolar newbie. And she asked a question, which I can't adequately answer, so I'm going to ask for your help in responding to her.

She said she likes blogging because she can honestly talk about her illness (she was only diagnosed four months ago, and started blogging about it a month ago), and she's not able to talk about it with "real-world" friends and and wondered why. (However, I just read her blog and she did talk about it with someone today and felt much better.)

I'm not really sure that I have a good answer for her. I believe there may be many reasons it's difficult for friends to discuss bipolar disorder, but here are a few: 1. They may feel like it would be an invasion of your privacy to ask about it. 2. Because it's a so-called mental illness, they may feel uncomfortable talking about it. 3. They may be waiting for you to broach the subject. 4. They may worry about what you're going to say, and be concerned that they won't know how to respond.

Does anyone else have more insight on this than I do? Or can you make suggestions on how Paula Joy might encourage them to talk about it?

Paula...I've actually got a more pressing issue to advise you on, and perhaps it will affect others as well. In your blog, you said that you have a thyroid problem. And I recently read that there is a "clear connection between the process of thyroid hormone regulation and bipolar disorder."

A really good article on this is on the website PsychEducation.org. Jim Phelps who runs this site is an M.D. If I were you, I would download this article and show it to your doctor. It's possible that you're not bipolar, but that your thyroid is causing "bipolar symptoms." Before I would be willing to be labeled "bipolar" and continue with your current treatment of Topomax (which isn't working), I'd find the best specialist I could find who is really knowledgeable about the studies that Dr. Phelps mentions.

If I were in your shoes, my next step would be to go through a battery of physical tests to ensure that I was getting the right diagnosis. I would be very cautious about taking a drug like Topomax without conclusively knowing that what you've been experiencing isn't caused by your low-hormone regulation.

And since I know you're religious, I would pray to God that your problem is hormone related and that you're not really bipolar.

P.S. You can still read our blogs (smiling face), but this would be great news.

15 comments:

Gianna said...

I'm with you as far as treatment making me worse....much worse...and I now have cognitive problems I never had and I gained about 90 lbs in the course of 15 years on the drugs.

As you know, I'm on my way off the drugs and I say good riddance.

As far as talking to people...I think we're all different...though my blog friends are certainly able to talk in a more intimate and knowing way...I've always had close relationships with people I could be very open with. I've had life-long friends who have seen me at my worst and talked to me through the whole time.

I know I'm lucky. I often don't feel at all like other people with this label because of things like that.

but then I do too---in spite of the connection with friends I still feel alone quite often and that all seems the same.

Paula Joy said...

First of all, thank you SO MUCH for devoting this post to me! How incredibly nice of you! I sure need the insights!! :)

I read both Jim Phelps article and Peter Brighams article. Wow. I'm pretty much still in a state of shock and I need to revamp my "Game Plan" :)
I've been treating my under-active thyroid for about 3 or 4 years now. I recently upped my dose, to a "normal-high" because I felt like the "normal" wasn't high enough. The arctiles talked about levels that are not seen through regular blood work - that's the interesting thing. Then again, the first 3 months on Topamax I felt wonderful. This is confusing. I will bring that article with me to my doctor tomorrow.
So, then, who do I go to to get the proper diagnosis?? This is really quite the process, isn't it??!!

marja said...

I have a thyroid problem as well, but am receiving treatment for it. I think that if you're receiving treatment for it - as Paula Joy is - and still having bipolar symptoms, it's more than just the thyroid. Thyroid problems are pretty easy to deal with as long as you're getting right dosage of medication.

I think a lot of the reasons people don't want to talk about bipolar with us is because it's considered by so many a shameful condition and thus should be hidden and not talked about. SO WRONG! This is the horrible thing about stigma! Don't we suffer enough from the symptoms alone? I don't get angry very often, but get me talking about stigma and I get furious.

We who live with the disorder have a job to do: to educate, to speak out, to make this whole thing okay to talk about. The more we speak out, the more society will start realizing that this is an illness like any other and needs to be addressed and understood.

Bipolar Wellness Writer said...

Gianna,
Actually, I was thinking of you when I said I was one of the few people who feel worse. I, too, gained a lot of weight on these drugs (30 pounds in three weeks on Zyprexa alone; which I lost as soon as I stopped taking it). Still, I'm about 45 pounds heavier than I feel good about, and it's my birthday goal to lose it.

I, too, have always been able to talk with my most intimate friends about this illness.

Right now, the entire thing is beginning to feeling "old" to me. Yesterday, I almost stopped writing this blog because I'm ready to move on, and I feel like I'm dwelling on old issues--that I'm done with.

We'll see. Thanks for your perspective on this.

Susan

Bipolar Wellness Writer said...

Dear Paula Joy,
I think I may have made my point a bit too strongly. I have no medical background and in retrospect, I shouldn't have given "medical- related advice." Rather, I just should have suggested that you might want to discuss all this with your doctor and research this area in greater depth.

It's just that both Gianna and I have such difficulties with medications that I'm loathe to see others go on the same path --particularly if thyroid hormone regulation problems can replicate bipolar symptoms.

I'm not sure if you received a diagnosis from a psychiatrist or a medical doctor. But these are all questions worth pursuing.

In a way, I'm not a good role model for you because if I had this to do all over again, I would have made very different choices. But that's just me, and my beliefs are quite different than most.

And once again, none of the usual medications worked for me. Topomax was a particularly bad drug for me, had terrible side affects. But, since it worked for you, what can I say?

We're all different. I guess I would just recommend that you remain vigilent, question everything everyone tells you, and make sure you're seeing a doctor you trust.

Susan

Gianna said...

I feel like quitting all the time...at this point I've served my educational purpose and my story has become dreary.

And Susan, most of the people in my blog circle have the experience of drugs making them worse...

It's a very common situation. Sometimes one figures it out only in retrospect. Side effects of drugs are often blamed on the disease...and people believe it.

It's really very scary. We are so vulnerable.

Bipolar Wellness Writer said...

Gianna,
I, too, have met my goal about sharing my thoughts on this. I'm going to email you offline about an idea I've got.

Susan

bart said...

hi susan,

i can relate to this post so well, for me there's also an issue of trust going on... i for one have difficulty trusting people because i often can't trust myself although i have very definite views on what i can, can't or won't do...

i wrote a post on this a couple of days ago, the issue is still a bit nebulous in my mind right now but i'm hoping it will clear up soon...

keep well...

Paula Joy said...

What were your side effects from Topamax?? I have acne like I'm 16, I can't drink carbonated beverages - taste is aweful, and I get a tingling/numbing in my chin, nose and left elbow. I WAS feeling stable on that med, but for the past 2 weeks, I've been up, down and all over. SO, I would have to deem it uneffective at this point.
I am VERY thankful to you for bringing up the point about the thyroid, and I will definitly address it with my doctor. I've only been diagnosed by my GP, and will ask for a referral to a Psychiatrist when I see him tomorrow.

I greatly appreciate your input - GREATLY!!! I am very much a "go with the flow" kind of girl, and can be quite passive, so even to be told to "question everything" is good advice for this newbie!! :)

Bipolar Wellness Writer said...

Dear Paula Joy,
I've got six years of detailed mediation info in my diaries, but I can't easily find it and I'm rushed today. But here's what I would suggest:

Go to the following link. It's from Dr. Bob's site, and he's a psychologist with the University of Chicago. This is the Topomax thread. http://www.dr-bob.org/babble/20001231/msgs/50878.html

Also,go to the NAMI link I'm providing. I don't always agree with them, but it's worth reading. In case you don't know about them, they are a large mental health consumer organization.
http://www.nami.org/Template.cfm?Section=About_Medications&Template=/TaggedPage/TaggedPageDisplay.cfm&TPLID=51&ContentID=51815

There's another listing from Bipolar World, written by Ivan Goldberg, M.D.
http://www.bipolarworld.net/Medications/Mood%20Stabilizers/depression_central_topiramate.html

Finally, you'll just want to go online and seek out your own sources. That way you can get positive and negative information and make a choice.

Susan
P.S. I'm leaving home for the rest of the day, so I can't respond to any more comments until this evening. Just wanted you to know.

Bipolar Wellness Writer said...

Thanks Bart,
I'm afraid I'm off and about. But I'll try to look at your blog later.

Susan

Syd said...

Very interesting thread. Several doctors have suspected low thyroid activity for me as well, but have been unable to prove that conclusively with any tests. I think I've had at least 4 through the years, most recently last year. It's something I'm going to follow-up on again though thanks to this series of posts.

As for talking to friends, sometimes I think I did myself a disservice by working so hard to appear "normal" to friends, family and co-workers. As a result, when I was finally ready to talk to them about my diagnosis, they couldn't reconcile their perceptions of the disorder with their perceptions of me. I got tired of trying to explain what was really going on inside of me and how much effort I'd expended to hide how I felt, that I just gave up.

Bipolar Wellness Writer said...

Syd,
Another interesting comment. I imagine some people feel they made a mistake in telling and some feel they made a mistake in keeping it to themselves!

Susan

Paula Joy said...

I like syd's thought. Being at the beginning, I guess I can still decide which of the 2 routes I will take!!! Very interesting concept!
I, too, tend to work SO hard at being normal around friends and family. In the end, maybe I'm only hurting myself by not being honest. Thoughts to ponder...

Bipolar Wellness Writer said...

Dear Paula Joy,
I've spent the last 15 years writing about being bipolar, as I tried to get well. I've spent the last year writing this blog. And I'm almost ready to "quit" writing about it, and quit talking about it, and return to the mainstream. I believe there's a value in finding like-minded people, particularly when you need information and advice, but there's also a value in not "dwelling on it" to the exclusion of other things.

Susan