Beep's Purple Personal Blog

If it were not for you I might just feel like I am talking to myself in an echo chamber...

I thanked God for my family and my friends on Thanksgiving. xo

Somehow, this will be Christmas, even if I only have a few of you left to celebrate with me thanks to the "scorched earth effect" Effexor withdrawal has had on my personal real life friends list.

It has not been so long since I cut my Effexor dose in half. A matter of weeks. And I have managed to strain or break almost every important relationship in my life in that time. It is so tempting to go back up to the dose I was on and be normal. But I can't. I would quickly run out and then be in really psychotic withdrawal hell. Also, the worst is over, and I don't want to go back up only to have to go thru it again. I don't need to be on 300 mg. of that poison. In fact, I don't like being on 150 of it. I think it helps a lot of people. But I also have a bad feeling that the people who go through the kind of withdrawal I am going through probably shouldn't be on it in the first place.

I need my doctor to talk to me about this or I need another doctor. How I'll find one, I don't know, since this one took me 1 1/2 years to get in to see. But I can't fix the mess I'm in because I cannot prescribe my own medicines. I might know exactly what would do me good; so what. Without the magic M.D. next to my name I can just wither away until I somehow convince a doctor or docs with expertise in the fields I'm currently having problems with (gyn, psych) to care about me enough to help me.

I need progesterone to stop bleeding, one of the older and safer antidepressants to ease the depression, and a lot of support and possibly an anti-anxiety med until they take effect. If anyone out there owns a prescription pad and has the worth-many-thousands-of-dollars signature, and is compassionate--let me know.

Until then I guess I'll just keep losing people and having to use a lot of eraser in my address book. I had to do that last year when 8 people I knew died. There may not be much point in HAVING an address book, pretty soon.

Interesting list. Link is here. Posted as a public service. I'm not the only person who struggles with this. Although the frustration for me is that mine is treatable, except that I can't write my own prescriptions so I'm stuck until I can find a doctor who feels comfortable with these medications and who wants to treat me. Oh well, can't have everything! I haven't won Lotto yet, either.

Well...can't expect to have every day relatively free from pain or other icky symptoms...can't expect to have EVERY day up and around...that would be expecting too MUCH. Right?

Ah well, tomorrow is (or will be) another day...

Had a great T-day weekend time with family. Then took dburr to some Black Friday shopping at a BIG mall. We had a nice time but now I am so tired I think this is all I can write for now!

What century is it; does anybody know???? THAT is how tired I am! Heh.

Nothing like a nice soft bed...

Right now, I'm doing laundry. And I need to put a lot of it away in order to find some clothes to pack. I'm going to head down to TO to my family tomorrow am. Hope the traffic won't be as bad as I've heard today's is! dburr is kindly coming with me so that I will have someone to whom to complain about the traffic ;) This is a good holiday for him...as it is based on FOOD.

Reminds me, I need to ask my sister what I can bring! I am so lucky that I have many good cooks in my family and I just have to do menial tasks that are within my small range of kitchen competence :)

If anyone is out there, what are you going to do tomorrow?

Happy Thanksgiving to you and your family and friends !

I know I have a lot to be thankful for, such as having family and friends. And still being alive to be thankful for them.

Even if sometimes they do move too fast for my iittle camera :

I admit to some jealousy of the people who have been able to afford all of the remastered Beatles albums.

Heck, I admit to some jealousy of the people who can afford to buy pants that fit. Most of mine literally keep falling off of me. Totally embarrassing. I walk around holding them up with one hand! Only my little niece thinks this is, in her word, "hilarious." (how does a 4-year old know "hilarious"?)

I've still got an unanticipated massive credit card debt staring me in the face. Ah well.

I had a good time last night at the rheumatic diseases support group meeting. But before I went to sleep I foolishly went somewhere online that I shouldn't have and that gave me the little push into depression. I know the main problem is that my long-term case of depression is currently undermedicated. (Yes, I've talked to the psych. No, he won't help me. He wants to wait until I see him and the first available appt. is Dec. 10. There is nothing I can do about that. I was lucky to get him to see me and there is a waiting list for every single psych in my area who doesn't have a terrible reputation. If you want to argue with my doctor I'll give you his number!)

I'm doing better as the day goes on though. Music. Exercise. Positive self-talk. Conscious breathing. Laughing at the antics of the betta fish. Avoiding critical people.

But it would help if I weren't in a lot of physical pain and having a lot of other icky physical symptoms. I really wonder what truck hit me in the night.

Don seems to be doing a lot better. Crossing fingers!

Lupus and Rheumatic Diseases Group meeting tonight.

Final version of the flyer for the upcoming rheumatology talk in Santa Barbara was emailed to me today. Hot off the presses:

Santa Barbara Patient Conference

Saturday, December 12, 2009

1:00pm – 4:00pm

Earl Warren Showgrounds

Warren Hall

3400 Calle Real

Santa Barbara, CA 91305

Lupus LA is pleased to announce its Santa Barbara Patient Conference. Patients from Santa Barbara and surrounding counties will have the opportunity to hear from two of the top rheumatologists in Southern California: Dr. Timothy Spiegel and Dr. Daniel Wallace. Participants will also be able to submit questions about Lupus, Sjögren’s Syndrome, Raynaud’s Syndrome, Fibromyalgia and other rheumatic diseases and hear answers from the experts.

1:00pm – Registration

1:15pm – Welcome

1:30pm – Problem Diagnosis: How we diagnose lupus and

distinguish it from other similar diseases

Dr. Timothy Spiegel

2:00pm – New Advances in Lupus Treatment

Dr. Daniel Wallace

2:30pm – Ask the Experts: Question and Answer Session

This conference is free of charge and open to the public. To register for this event, please email or call Lupus LA at info@lupusla.org or (310) 657-5667. Visit our website, www.lupusla.org, for more information about our programs and events.

Lupus LA's Santa Barbara patient conference is sponsored in part by an unrestricted educational grant from Genentech/Biogen, Idec.

Not just a wonderful friend, but a rescuer :)

Stephanie has helped Don and I literally survive in many ways and many times. I think she's what a Christian is supposed to be (sorry, Jimmy Swaggart et. al.)

Happy birthday and may the coming year be filled with blessings for Stephanie!

Btw she also likes PURPLE! Now, how cool is that? :)

I saw her on her birthday, of course, and she doesn't read this blog, but I wanted to put her birthday here anyway :) I hope she has many more birthdays...I love my mom.

I'm hoping it will prove to be a 24-hour bug or food poisoning...things that don't last nearly as long as the flu we both recently endured.

He came home tonight and started vomiting, and could not stop. Although he had no fever he was in quite a bit of abdominal pain. I didn't feel confident just waiting to see what would happen through the evening and the night since he did just recently get over a bout of what was most likely the "new" flu and also he was certain to get dehydrated if the vomiting did not stop.

And there was an additional complication. I've been suffering from eye pain and other symptoms of conjunctivitis and it seems to be sort of stuck at a low-grade infection level--my suppressed immune system can't get rid of the thing completely. The eye pain today was excruciating and I could not read or do much computer or do much of anything, really. I'm sure my Sjogren's Syndromed super-dry eyes didn't help the situation. I kept trying to flush the junk out with artificial tears. But it is hard to drive a car because there is sun during the day and headlights at night...and I had a nasty case of photophobia, one of the common symptoms. The urgent care center around the corner from us is not open 24/7 so I wanted to get him there before it closed. I knew I could not drive him to our regular docs in other cities.

I had to put the appointment on my already about-to-crash credit card but there just was no choice. Don is out of money after not making very much during Flu Month and it's not like I get paid for having tried to advocate for the changes in our health care system which would be needed for me to work at home with part-time flexible hours (all that I am unfortunately capable of doing right now.)

The visit was important. Don is no longer in terrible pain and although the anti-nausea, anti-pain, anti-cramping shot he got there will wear off after 4 hours, he has meds to take after that. He is not vomiting now either. Just very tired, feels weak and still has a very tender abdomen. He can only have clear liquids and I was instructed to get him in to his doctor tomorrow if at all possible.

Both Don and I have conjunctivitis and we each got a prescription for antibiotic drops. But the pharmacy just had to screw up and only fill Don's. I hated to take a med from a sick person but I had to commandeer his eye drops! His eyes don't hurt (yet) and I need to have mine working enough to be the driver tomorrow.

I'm having a lupus mini-flare. Could not be more tired...

zzzzzzzz.

I've had an interesting week...

I've got a lot to tell my health blog that I really don't have the energy or inclination to do right now.

Had a kind of crisis...re some people who are also involved as I am with a large group of people that I do volunteer work with. It caused me to have concern about a close friendship and also about whether or not I can or should stay involved with something that is important to me. However, I now hope and feel this particular situation was resolved. It just took some time and energy and I'm still not sure that I presented my case in the best way; it was the best I could do at that moment and I had a time crunch.

I had a great time with my family for my mom's birthday.
But I did get very physically tired. This was my own responsibility because I chose to not to be a party pooper and insist on the rather large amount of daily rest I need to get right now. And I also had a selfish motivation: I wanted to be able to spend as much time with my family as I could since I don't get to see them as often as I would like, and that especially applies to my nieces since I don't "see" them in email or other places online like I at least get to do with my bro in law and sis, or talk to them on the phone like I do with my mom. Of course Sabrina the dog would like a mention as well :)

I came back in time for Stephanie's birthday party which she was kind enough to share with me since I hadn't been able to celebrate my own birthday after I got the flu. I received really wonderful birthday gifts and cards I will treasure as well.

Unfortunatel,y someone whom I have had arguments with before that upset me tried to have an informal debate with me again...persisted after I asked repeatedly to drop the topic we were discussing, and when that didn't happen I became very hurt and frustrated but, worst of all, just emotionally overwhelmed, and finally left in tears.

When I cry, it is totally involuntary. I find it embarrassing as well. When my depression is being treated properly, which it isn't right now while I am switching medications, or when I'm taking a medicine that basically has its foot on the depression pedal (like prednisone 10 mg or above which I'm NOT having to do right now thank you God!), I cry less--but I'm still a crier. I was born that way and my mom is the same way and I just don't think I can change it. But what I try to do is gracefully exit the situation when I feel like I'm getting emotionally overwhelmed.

I didn't do that in time this time because I was eating a special dessert made with something safe for my diabetes that I can actually tolerate--a rare treat and I wanted to have it! Sin of gluttony? I don't know! It was my "time" to eat for the diabetes, too, so I needed to eat something. Thus I wanted to stay where I was. And didn't get up in time to be graceful or polite in my exit from my tormentor and I feel badly about that.

I do usually pull myself together fairly quickly once I'm away from whatever it is that is happening that is upsetting me. But things took a bit longer this time.

I ended up needing to remind someone special that hearing criticisms while I am crying always makes me worse. Always. So it's a bad time for them. If I can't get any of what helps me pull myself together, like very very gentle treatment, then it really is better for me to be by myself until I've pulled myself together. But ok, this person realizes this and apologized.

I also received an apology from the debater guy and we did what I really wanted which is to agree to disagree on the particular topic. He also agreed that it would have been better if he stopped talking about certain topics when the people he is talking to beg him to not discuss that topic any more with them.

So that's all sorted.

What's left? Well...I overheard some stuff said about me that I know I was not meant to hear and frankly wished I didn't hear. House walls are often not soundproof. Even if people leave a house but are still on the premises they can often hear stuff when they are near open windows or an open door. Naturally, when I tried to return to the party, I opened the door...and I overheard things I just didn't need to hear. This significantly delayed my re-entrance.

There is something that one person in particular said about me which has hurt me. I just don't have whatever it is it takes to talk to them about it. I'm tired; I'm sick in a few ways; I want to enjoy the holiday season; I'm on "friends who have me questioning whether or not they really like me" overload. Interpersonal conflict and communication malfunction week is now officially over.

I don't have that many real-life friends. Mainly this is due to long-term illness. I don't like being so tired I can't leave the house, or so sick in embarrassing ways that I can't leave the house, but that is a card I drew in life and is just the way things are. But I am so blessed that I live in an era with postal mail, telephone, texting, email, chat, forums (Latin grammarians, sorry), social networking sites...I could go on and on but the point is you no longer have to be able to get out in the world physically every day to make and keep friends.

But it means my real-life friends are special, and if I have a problem with any of them it hits hard. I had a problem with one in September, two this week and now I've got to process the (cue dramatic music) Things I Overheard. It's too much at once.

I really feel that the depression button has been pushed now, since I was so looking forward to this joint birthday party. I don't get a whole lot of positive affirmation so I love my birthday...it's very painful when something like this happens at anything that has anything to do with my birthday. I also feel terrible about my choosing to attend making things awkward for Stephanie's birthday party.

I hope it will be a mild depressive episode...I won't know tonight. I'll know when I wake up in the morning if I'm looking at "a little rest and then something like a walk will make me feel ok again" or if I'll be saying "I am going to read books and hang out with trees and animals because I'm not really successful with other human beings."

I also feel like pulling back into more isolation, on purpose, because I'm not sure if anyone really really likes me. How can I be sure? We never really know what anyone is saying about us behind our backs...unless you know someone like me, who will in most cases, eventually when I get up the nerve and the energy, talk with you directly if I have a concern about something you are doing. Not that I'm saying this is a virtue! Maybe you don't want to hear it! But you know I'm not "gaslighting" you. You won't walk into an alternate universe when you are around me and hear me saying anything about you that you haven't heard before!

I'm so tired. I want to end this entry quickly now.

Things I want people to understand:
I believe that if you feel you must say rotten things about a friend, particularly in a loud voice, make sure they are not actually on the premises.

I am not well enough right now to handle three important things in one week. The current level will now be scaled down to two because I have no choice. I'm not planning on canceling anything I have currently committed to but I might not be able to take on any more.

I'm not in a pro-party-attendance mood right now. I'm in an "avoid people; be safe from harm" mood. I hope I feel differently tomorrow, since we're supposed to actually be having one here where I live fairly soon.

FYI, I'm calibeep on Twitter

• 14:40 RT @calibeep: @AFPCalifornia CA is only one of 3 states w. 2/3 req. for finance we lose a LOT of money in budget gridlock #cabudget #
• 17:25 Please RT Lost dog Cheyenne WY breaking girl's heart surely someone somewhere knows something! bit.ly/17jrqf #
• 17:40 Please RT Lost dog Cheyenne breaking girl's heart surely someone somewhere knows something! bit.ly/17jrqf #Wyoming #

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Someone's daughter is in tears over her missing dog. The dog is a chocolate lab with green eyes & a black collar...Lost in Cheyenne, WY on the southside...his name is HUGO & he is very friendly & not fixed.

Not an Amber Alert but still something which affects children deeply and for many of us, our pets are family. Even my hermit crabs, all named and deeply loved.

By putting this blog entry here I can now tweet the url :)

PLEASE help to pass this on!!!

Anyone with info please contact me here or at the email address xbeepx at gmail dot com .

Ok, I stuck to the no name policy, but you know who you are :)

But I wanted to let you know that, as I finally got over the flu... this is what happened.

Truth.

FYI, I'm calibeep on Twitter

• 22:55 Please re-friend me, everyone I lost on Facebook! What a mess. #

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 Seeing if this blog is back on-line w. my FB page.

Oy, what a FB crash I've had!

 for my colonoscopy/endoscopy/thing.  Well...I thought you had to wait 8 hours before driving; it says 24.  I thought you had to take things a bit easier for a week; it says 2.  A bunch of stuff like that.  I didn't know I HAD these instructions!  I was too out of it when I was picked up to go to my friends' house to rest till I could drive home.  All I remember is that whatever they gave me made me talk and talk and talk about nothing...and that I must have done something really embarrassing because I have a dim memory of my doctor laughing really hard...

 Is it possible?  The last one was approved before I was born.

Benlysta?  Are you real?