Main » April 2005

April 30, 2005

OFF PAXIL FINALLY....hopefully through the worst

OMG, 5 weeks going off 10mg a week from 50mg to 0mg of Paxil. Paxil that I'd been on at least 20mg for 7 years. The doc said I'd feel lousy. But this is all worth it to go on new miracle drug CYmbalta.

LOUSY:
That's an understatement. These past 2 weeks I've been so dizzy, light headed, full of pain and with no energy.....and a constant ringing in my ears....All the symptoms I had in the beginning before I got relief. Oh yeah sleep way off, and anxiety through the roof. I'm sleeping and spending the day with a tissue box again.

Today is the first day of the rest of my life:
I'm hoping.....cause these last 5 weeks stunk! This morning I took my first dose of 30mg Cymbalta. I realize it'll probably take it the week to actually help, since my Psych. wanted to see me 1 week into it (next Friday). So for now I'm couch or bed -bound, housebound, just plain nuts at times, crying for no reason or a stupid reason.

Last night I got up around 4am to go to the bathroom and when I closed the door to the little toilet room in the bathroom, the turn spun my head out and while the toilet takes up 60% of the space and you'd think I could grab either wall and land on the toilet....nope, on the floor, half next to it half in the legroom. I think my spirit and perhaps my rump are bruised.

Sooooooooo, sick and tired of this. Did I say I can do 5 weeks if it will end up for the better??? I'm not made of that strong a stuff anymore!!!!! Although I did make it through the 5 weeks. God help me, please let the cymbalta start working soooooooon.

Hugs, Judy

Posted by at 3:20 PM | Comments (6)

April 25, 2005

Almost off Paxil

Hello :)

I am on week 5 of going off Paxil 10mg per week (started at 50). So at the end of this week, I get to start taking the new 'wonderdrug' Cymbalta. I really hope this is all worth it.

It has been awful these weeks especially lately. Pain, fatigue, sleep disorder are all worse. Anxiety and not wanting to leave the house are going through the roof! My mind is even less alert than usual with Fibro Fog. I had a meltdown, hyperventilating out loud uncontrollable sobbing because I wanted to not feel dizzy and shaky and I'd showered and done my hair because I was gonna beat this thing and go to the store with my husband. NOPE. The decisive moment was post shower & hair & underwear, but prior to the BRA. Putting on the bra would mean I was going to put on my jeans and top and shoes and go. Not putting on the bra meant I couldn't, I couldn't pull myself together to go anywhere afterall. So the moment that I picked up a krinkle thrown on dress rather than the bra I had decided. And I began with tears dripping down my cheeks, then more, then my husband noticed and you all can support this, once someone sees you crying and is sympathetic, you cry more! It was a half hour of donkey noise, nose blowing, hyperventilating, uncontrollable sobbing. He held me and gave me an ativan (good man). Finally, I was breathing normally and my nose was clear (toward the end, blowing my nose, I kept saying...'can you believe all of that came out of my cute little nose??" and he'd laugh and say no). he put me to bed and kissed me bye cause he was going to the store. When he kissed me my lips started to quiver and my eyes got wet and he stayed and talked me back to relaxed, then he left and I slept. At least this meltdown didn't end me up on the bathroom floor in a fetal position.

I can't go anywhere, but I have to go get something notarized at the bank TODAY. So I have to go there. I WILL go there somehow.

My family and my 'sweet gal' friend, she knows who she is, are my life right now. I reach out here, Thank you Tracy! And visit another site of a friend's regularly. I talk to my family and long to talk to my 'sweet gal' friend, as she's going through something really big.

Wish me luck and send prayers if so inclined, this last week of going off Paxil.....

Hugs and Blessings, Judy

Posted by at 11:45 AM | Comments (7)

April 24, 2005

Fibromyalgia's secret weapon: Fibro Fog

Hi :)

I was reading and replying to Lee's entries re 'chemo brain' (she's a cancer survivor posting here). And as I wrote to her that I could really understand because of my Fibro Fog, I started to go further into it than a 'reply' warranted, so I'm posting more about Fibro Fog here today.

Lee's post said what I feel, the short-term memory and other brain malfunctions make us feel like idiots...when we are NOT!

Fibro fog creates a crazy filter and info leaving my head via my mouth gets jumbled up, dyslexic speech(like big tree would come out trig bee), rambling and then not remembering what I was talking about or just said, and just plain not remembering something just said and having to ask, "what did you just say to me?" over and over and over. It's amazing my family hasn't bonked me with a 2x4 yet! And I do feel like an idiot.

I know that I'm not an idiot..I got a college degree in accounting, I passed the CPA exam all at once, I joined my father's practice and after 6 years we expanded and incorporated and I was vice-president. We had to move to accomodate a larger tenant so I drew up the floor plan for the new office space and supervised every step and ran the move all while working, and I was an officer in a civic professional charitable women's organization for which I went to China and stood on the Great Wall for heaven's sake...the last 2 years that I worked I produced more income that my partner did and I also brought in more new business, all while single momming my precious daughter...I'm not an idiot...I was about to enter graduate school for a Masters in Taxation...I scored 630 on the GMAT, entrance exam, 90%. My sister does remind me of that, after she reminds me that she has 2 masters (MBA & Education). I was on track to build and then take over most of the practice and let my father wean off and retire.

"The best laid plans of mice and men..." (don't remember where that's from).....oh well for that.......this disease cutting me off at the roots at age 35 was not planned. And I have to remember it was not my fault (though I pushed myself and ran on adrenaline and 'didn't sleep well' for years and years). Yet I'm the one to live with it now and right now as I'm going off Paxil it stinks! (more than usual)

"And that's the truth, too" -- Edith Ann, character of Lilly Tomlin

Hugs, judy

Posted by at 12:03 PM | Comments (12)

April 19, 2005

Friends & Family after Fibromyalgia Strikes

Here is my angel girl. She has been the light of my life and continues to be. Of course she was also the bain of my existence at frequent intervals during ages 12-16.

My Jen, it may make me cry to write this, yup, ... she is proud of me today just like she was when I was the best business woman in the world (her view,,and I was damn good).....she understands how we think I got this disease and she supports me and still respects me. Now this is a greater level of both at 19 than at 15, still she never stopped respecting me...I've asked her about it.

Keeping friends when you get disabled?? Sorry, you're too inconvenient now, except for the lifelong best friends that live out of state by now and you stay in touch by email and Xmas cards alone.

Family....some understand, some don't,

Sister--some are jealous that I'm "sitting at home eating bon-bons while 'she' is working harder than anyone else in the world and I'm being paid with her tax dollars!"

BTW My main source of income is a private disability policy I paid for myself, the SSA disability is good too & BTW I'd worked 20 years by the time she had worked 3 and she's only a year younger than me.

Father--"If you can buy a house and move out and live with a man then you should be able to come back and run the office and work again" ... not... being able to have some resemblence of a personal life does not equal able to work.

My mother and my daughter have been my rocks along with my Faith and not in that order since 1/97. My dh Frank has been understanding and supportive for our 6 years together.

I'm gonna support myself now and go put my head down.
Hugs and Blessings, judy

Posted by at 1:35 PM | Comments (4)

More on stopping Paxil to switch to Cymbalta

Ok, I started taking Paxil 8 years ago (redid the math) when dx'd. The rx was for seratonin uptake replacement or something like that. I told myself, yes it's an antidepressant, but I'm taking it for a physical disease, I'm not nuts or depressed. Over the years a dose of 20, became 30 about 2 years ago & 40 a year ago & 50 a couple of months ago...it helped, but my docs agree it's not helping enough, and the new drug Cymbalta may make much better improvements to my health.

So now I've just started taking only 20mg of Paxil in my gradual decrease of Paxil from 50mg to 0mg over 5 weeks, at 10mg/week. As previously reported, I am reexperiencing all the pain fatigue anxiety feelings of shortness of breath and racing pulse and panic attacks. As written before this is no fun.

I'm making something for a very special friend in my downtime, well the downtime that isn't spent actually trying to nap. I'm making great headway as I have loads of downtime.

I thank God & my doc for Vicodin which I take once or twice a day for the acute severe pain in my hip and all over serious pain. And I thank God & my docs for the muscle relaxors which help as FMS is a a tightening of muscles, not inflammation of same. Those are the only things that give me relief...and my sleep has been down to 2 hours continuous from 4 1/2 to 5, my record.

The meds make it possible for me to do the minimum I need to do and the gift creation that I'm loving doing.

My mom just called and wanted to know if I wanted to go to a friend's party on 4/30.......I told her that would be the day I hit zero mg of Paxil and I don't think I'll be up for a party...she understood. She hates to see me like this but also trusts my Rhuemy as I do and has hopes for the new drug.

Personal Note: My Jennifer has come by once or twice a week, in addition to seeing her at Mom's or for 'something'. I love that girl so much. I realized I shared the picture of Garrett in September and Jen and her brothers, an older pic, around July. I'm going to try to attach a pic of my Jen that's more current, as she's my greatest work of art!!! She's 19 and I can say that now without flinching...well most of the time! LOL

Hugs and Blessings, Judy

Posted by at 1:16 PM | Comments (8)

April 17, 2005

Quitting Paxil really stinks

Well I'm 1/2 way to being off Paxil for the first time in 7 years. And I feel like hell. I am having bouts of fatigue and random bouts of crying for 'no reason' and the pain is worse (from my hair to my toes). The anxiety factor is soaring too, and on top of it all I just got my period. You shoulda heard me being ridiculous and trying to pick a fight with my husband (we don't fight). All I can say is that this drug switch better be worth all of this. I downshift on the meds on Sundays. I'm depressed and fatigued so much more than normal for now thru Thurs. and on Fri & Sat I feel better, but this agitation is still lurking. Luckily I'm a positive person and the second I realize what I'm doing or that I'm acting out, I make sure I'm current on my meds and go to bed. Sleep is safe, I don't have to feel all the creepy feelings, and my husband and stepson are safe from a crazy woman who used to be me. Two more weeks of this crap then I can start the new med. It better be good.
Hugs and Blessings, Judy

Posted by at 7:34 AM | Comments (3)

April 10, 2005

Quitting Paxil to switch to Cymbalta

My docs (psych & rhuemy) agreed for me to wean off Paxil 10mg a week for 5 weeks. Well I'm into week 2 and I don't like the way I feel. If I really think about this, I'm headed back to where I began in a way, and I don't want to be that sick again. At least my sleep is better, but still affected by the changes.

Cymbalta has some Paxil-like feature and some ephedrine feature and is supposed to work wonders on FMS & CFS. But it's not enough like Paxil to just switch.

The doc did warn me that I probably wouldn't feel good during this change; I thought so what I usually don't feel that great. But the nausea and high anxiety and more pain and less sleep are back. Along with depression levels that make me not want to leave my house or talk to anyone. (When I can talk, I do want to talk to my Mom Sis and Pilgrim)

Going back to bed....hate this....it's like when they say "Now this will feel like a tiny bee sting"....."you may not feel so good during this", well thanks for the understatement of the year!

Tired & weak, back to bed,
Love to all, Judy

Posted by at 1:31 PM | Comments (2)

April 4, 2005

Fibromyalgia Depression has me sooo Lonely

My daughter Jennifer turned 19 Saturday. Maybe she'll always remember that Pope John Paul II died on her 19th. I will.
We went out to lunch, just girls, Mom, my sis Lisa, best friend Tina, Jen and I.
I got up and dressed in a cute top and the 'better' black jeans, did my hair and makeup.....a rare treat.
Jen had asked for confetti cupcakes with confetti icing for her bday 'cake'. I told my mom that I wanted to do that part for Jen so I bought the mix and icing at the store, and could barely stand when I got home. When I did get up I realized I didn't have any cupcake wrappers..crap!
So I made a bundt cake of it and took it over.
At lunch Jen got a complimentary deep dish apple pie ala mode which we all nibbled on. Then Tina went her way, Lisa to her puppy training class, & Jen Mom & I to Mom's. Jen got on the phone right away making her plans to go shopping with a friend, which fell through, and to go out to a miniature golf place with a few friends that night. Since her gf couldn't go shopping, she asked Mom and I if we wanted to go to Ross and find her a spring purse.....I wasn't up for that. So Mom went with Jen and I left....and the cake I made was left sitting there covered.
I'd had a hard time the night before thinking of her being 19, of the losses I've suffered from my illness, and that her dad has been gone for 5 years. Sunday, was worse. I got up late, ate a diet meal bar and watched the end of a movie with my stepson and then went back to bed. I awoke around 4 and heard my husband and stepson in the living room watching some wrestling thing and bonding so I stayed in bed and watched sitcoms and reviewed bills received this week. Another meal bar, another hour or two, and I went to bed at 8pm. Tears trickled down my face. I can't pin it on just Jen's bday. I'm overwhelmed with several things these days.
I feel so alone, even in a house with my beloved husband and stepson, even with my mom and daughter and sister just a phone call or 20min away. I prayed the Rosary and prayed and prayed....that eased the emptiness.
I still feel alone.

Posted by at 4:51 AM | Comments (1)