LUPUS/Fibromyalgia and more: Support for all

Brokendamselfly's Blog (21)

Blew up the computer

Hello all!!! I miss you tremendously!!! I received my dream of a 19" monitor for Christmas from my mother in law, so freaking amazing, I LOVE IT!!! And then........... I used one of those things that changes a 2 plug outlet to a 6 plug outlet (without a surge protector) and blew the fuse on the power cord for my laptop!!!! Of course you can't simply put a new fuse in, you cant open the dumb thing, you have to buy a whole new power cord. OYYYYYYY. So my new monitor sits there beautiful but with… Continue

Added by brokendamselfly on December 30, 2008 at 7:32pm — 2 Comments

Degenerative Disk

I have to say our Jodie (aka Darkandstormy) was right about my back. I talked to the Dr today about my spinal xray from last week and he confirmed degenerative disk in my lower spine that is causing the excrutiating pain in my lower back and hips. He also said there is nothing they can do just manage it with pain meds. Hello, I am already on pain meds for fibro and neuropathy. And these damn Doctors won't prescribe anything but tramadol or darvocet which just aren't strong enough for the three o… Continue

Added by brokendamselfly on December 11, 2008 at 3:11pm — 2 Comments

Getting things taken care of

I never ever make New Years Resolutions. Ever. But, I am trying to turn over a new leaf and take better care of myself. I finally called the endocrinologist last week to get my blood drawn and they called me today to start the synthroid. Today after dealing wth my lower back and eventually hips without saying a word to any one of my Drs over the last few years I finally called my PCP to make an appt for tomorrow. Older and wiser, right? I think I'd like to think I learned something from causing… Continue

Added by brokendamselfly on December 2, 2008 at 1:22am — No Comments

Thanksgiving with family and friends

Hello all! I hope you had as good of a Thanksgiving as I did. It was so good, it lasted 4 days!!!! Thanksgiving I have been Aunt n Uncle's this year. At Thanksgiving I found out my cousin's were having a party on Saturday. Apparently they have this every year. They call it Thankmas. They decided there needed to be a holiday between Thanksgiving and Christmas so there are decorations for both, food of course, and even Santa makes a visit. Now my Aunt has 7 kids so there are lots of people there w… Continue

Added by brokendamselfly on November 30, 2008 at 10:06pm — 1 Comment

Neuropathy update

I joined a group here for people with Diabetes type II and Fibro and I've promised to keep updates here in my blog on the treatments etc I have been receiving for the neuropathy. I am still on the 1800 mg of gabapentin for the neuropathy. But now I take a 6mg capsule of the zanaflex at night instead of the 4mg tablets twice a day. The dr's office has been giving me samples as the 6mg capsule has no generic and is supposed to be rather expensive, but apparently it works differently than the 4mg t… Continue

Added by brokendamselfly on November 22, 2008 at 10:25pm — No Comments

HORMONAL IMBALANCE

So there is something big that the Drs forgot to point out when they removed my thyroid, in fact several things. No one thought to tell me I need to go back to the endocrinologist to put me on synthroid. So I went back to the surgeon today who's nurse took out my staples. He did a blood test to check my calcium today and that was good, but I said "well the thyroid controls other things what about my metabolism? I don't want to get any bigger!" This is when he thought to tell me I have to go see… Continue

Added by brokendamselfly on October 21, 2008 at 6:02am — 1 Comment

Big 4-0 and surgery too

Wow, it's been a while since I wrote on this. Tomorrow I will be the big 4-0, so why does my body feel like I should be 80 not 40?? I have to say the neuropathy has been better although everything has been hurting pretty bad lately. Yesterday when I woke up was the worst. I think that the stress of having the surgery on Tuesday and my Mom coming to stay. Although I am not stressing about my birthday like I usually do. I am going away for the night tomorrow with my best friend. Dressing up and ha… Continue

Added by brokendamselfly on October 9, 2008 at 5:36pm — 4 Comments

Diabetic Peripheral Neuropathy

I went to a pain management Dr a couple of weeks ago. I really liked her and she diagnosed me with diabetic peripheral neuropathy, not arthritis. She said there may be some arthritis, but the main problem is the neuropathy. She bumped up my neurontin to double, which is 1800 mg a day. And I can say my hands and feet are a lot better. They hurt really bad at night but at least it's not excrutiating 24 hrs a day. Oh she also put me on zanaflex twice a day which I am not sure I like. The zanaflex m… Continue

Added by brokendamselfly on September 2, 2008 at 12:03am — No Comments

How long have you had fibro?

I know I have had fibro most of my life. As far back as I can remember I have had these sharp pains. I just kept expecting that I would grow out of them. Even in my early 20s the Dr at school would tell me they were just growing pains. How many 22-23 year olds do you know that have growing pains? We all know that fibro is said to be set off by one of 3 things..... a traumatic event (be it emotional or physical), emotional distress such as depression, and now I have even heard that it can come fr… Continue

Added by brokendamselfly on August 2, 2008 at 10:53am — 2 Comments

Sleep & Procrastination

Ever heard "procrastinaaaation is making me wait"? I realized tonight why I procrastinate when it comes to going to bed. I really do, I can be tired but still just procrastinate until I am just going to pass out where ever I may be. I can sit and watch tv for hours and know I hurt but ignore it. But when I go to bed there is no distraction. I can feel every single little thing that hurts and who wants to feel that? So I procrastinate. I am so damn exhausted right now it is ridiculous, but I have… Continue

Added by brokendamselfly on July 26, 2008 at 7:33am — 2 Comments

Brothers & BBQ

Yesterday I recieved an email from my mom about my brother. My brother is an alcoholic. He had a drinking problem before my dad passed away in January of 2000. When we lost my dad, we lost my brother too. But in my brother's case it is self induced to drugs and alcohol, mostly alcohol, but he will take whatever kinds of like valium or xanax type drugs he can also. In the past 8 and a half years, wow has it been that long since we lost my dad? huh. hmm. ok then, ah anyways in that time my brother… Continue

Added by brokendamselfly on July 21, 2008 at 1:25am — 1 Comment

Disney

Tuesday Steph (doxielover70) and her sister Michelle (gothicapped) and I went to Disney to meet Jodie (darkandstormy), her Uncle Eric, and his 3 girls. They were all wonderful. It was so great to spend time with Michelle and Steph again and to meet Jodie and her family. It's always fun to see children's reactions to Disney for the first time. The next day I drove over in the morning and Jodie and I had a nice breakfast alone. Then we all went off to the Animal Kingdom. I didn't stay long,a s hub… Continue

Added by brokendamselfly on July 18, 2008 at 5:52pm — No Comments

this BLEEPIN SUCKS

I have been having this really bad flare from being so stressed out about hubby's $00.00 paycheck. Pain, and the overall yucky feeling like I've got some bug, you know how you feel when you've got a flare. I went to bed at 7 p.m. last night for gods sake! And to top it off I ran out of my celexa and neurontin and my allergies are acting up. So I finally was going to the pharmacy this morning when they opened. It's 2 miles away. I had a flat tire on the way, about 1/2 way there. Had to walk the r… Continue

Added by brokendamselfly on July 10, 2008 at 9:51am — 1 Comment

Super WEIRD Dream

I woke up this morning from this immensly weird dream. Let's just preface this by saying my Mom and I never got along until a year ago, never....but just in case my Mom reads this I am not hung up on that now, it's ok. In the dream I am friends with this older woman (who I call Nana) and apparently have been most of my life. And my Mother knows her too but they aren't friendly. So I don't know what sparks this but some reason I have a memory or ind out there is some secret between my mother and… Continue

Added by brokendamselfly on July 9, 2008 at 6:16pm — No Comments

Another BAD poem

Pain Pain Unrelenting pain Will you ever let up Or will I leave my pillow with more tearstain? Continue

Added by brokendamselfly on July 9, 2008 at 12:48am — No Comments

Sleep n stress

Sleep Sleep Elusive sleep The more I miss you The more I weep. Quite humorous in no sleep, aren't I? Hubby would say more loopy than humorous. So if this post doesn't make any sense, or if there are a billion typos you will know why. Lack of sleep sure does one thing.......or doesn't do maybe is the better term.........it does't help with the pain. Holy cannoli! My knees, small of my back, hips, and what are those joints called where your thighs meet your pelvis? The past few days have been so… Continue

Added by brokendamselfly on July 7, 2008 at 6:56pm — No Comments

Great Day...

It's always a great day when I hang out with my best friend, but this was extra special. Today she drove over to my house, which is about an hour from her. She brought stuff to make us chicken cordon bleu for dinner, and I had yellow rice and green beans. It was sooooo good. She also brought me a wheelchair which should allow me to get out of the house some more. Next we went to see Toby Keith and Montgomery Gentry in concert. She has never heard of them, but she is like that, she just came to b… Continue

Added by brokendamselfly on June 29, 2008 at 3:10am — 3 Comments

Weird Dreams and BAD Flare

I have been having some super weird dreams lately that I am in pain or not feeling well. Tuesday night I had the weirdest of all.... I walked in my front door and someone came out of my kitchen saying "oh there you are....blah blah blah" like it was the most natural thing in the world. In my dream she was my great Grandmother, who I never remember meeting. Then on the couch was my Grandmother who passed away Oct 30, 2005. She was holding this spinning wheel, kind of like on Wheel of Fortune, but… Continue

Added by brokendamselfly on June 26, 2008 at 12:38pm — 2 Comments

GOOD Day.......Love My New Meds!!!!!!

So I started Tramadol and Sulindac late Friday night and this morning I did not wake up in pain. My hands are starting to hurt a little typing this but not too bad yet. And, after I took the dog for a short walk my hips and lower back started aching, but I woke up full of energy and not hurting. How freakin amazing is that!!!!!!!!!!!!!!!!!!!!! I am going to listen to the Dr and not overdo it today even though I am feeling good. Only hitch is the meds make me really tired, as if I weren't already… Continue

Added by brokendamselfly on June 22, 2008 at 10:18am — 1 Comment

New photos

Hello all....... Just a note to let you know that I uploaded a few new pics. I keep telling people about my kitty who must sleep with my hand between her paws and her head on my hand. And, if I try to move my hand then she digs her claws in is weird I know. But, no one has ever seen this except my husband because she takes off whenever she hears another person. So now I have evidence and it is posted for all to see...... Continue

Added by brokendamselfly on June 21, 2008 at 2:29pm — No Comments

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THE SPOON THEORY 38 Replies

ALL OF US SUFFERING FROM INVISIBLE ILLNESS AND DISABILITIES MUST READ THIS! IT IS AN EXCELLENT WAY TO DESCRIBE WHAT WE GO THROUGH TO OTHER PEOPLE WHO DON'T UNDERSTAND US. THIS GIRL SPOKE ABOUT LU...

Tagged: lupus, theory, don't, sick, spoons

Started by Butterfly Kimberly in MISCELLANEOUS. Last reply by Alexis Rene 22 hours ago.

New Here 2 Replies

Hi, my name is Roxanne I'm 21 years old. I was diagnosed with Lupus when I was 20. I also have another Autoimmune Disease Antiphospholipid Antibody Syndrome. I have Endometrosis, MTHFR Disease (blo...

Started by Roxanne in INTRODUCTIONS/PERSONAL STORIES. Last reply by Donna J Farr 1 day ago.

Plaquenil/Memory

I have a few questions for my fellow Lupie's. I was diagnosed with Lupus at the age of 16 but it didn't become active with SLE until August (I'm 25 now). I have been on Plaquenil or about 6 weeks n...

Started by Allison Abrusci in MEDICAL QUESTIONS 1 day ago.

Update Dec. 1, 2009 by Sheldan Nidle

-------------------------------------------------- Dec. 1, 2009 by Sheldan Nidle for the Spiritual Hierarchy and the Galactic Federation 3 Chicchan, 8 Yaxk'in, 5 Caban -----------------------------...

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Dec 2.

Update Dec. 1, 2009 by Sheldan Nidle

Tagged: Sheldan, Nidle, by, 2009, Dec.

Started by Sandy Medine in NATURAL REMEDIES, HOLISTIC, HERBAL, ETC Dec 2.

Scared about Cytoxan 3 Replies

I had a kidney biopsy last Friday. My Dr called today saying he was going to take me off the Imuran and start Cytoxan treatment for 2 months. I've been reading up on this med and it has me scared. ...

Started by Niki in MEDICATIONS. Last reply by Carla Giacoio Dec 1.

anyone with fibro living inyorkshire England 1 Reply

Hi my name is Joy I am 46yrs old I live in Barnsley sth Yorkshire, I was diagnosed with Fibro and CFS 2 years ago and searched many sites and places for other people with the same condition, I have...

Started by joy in DO YOU LIVE NEAR ME?. Last reply by Carla Giacoio Dec 1.

In Severe Pain 5 Replies

I got up this morning, and the pain was so severe. I haven't felt pain so bad in a long time. I took my meds, and they didn't seem to make a difference at all. This makes me so tired to have to try...

Started by Dotti Obert in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Nov 30.

Lymphoma, or just the lupus??? 22 Replies

Hi everyone! I recently saw my doctor who told me my lupus was flaring. But because my doc also noticed a swollen lymph node on my neck and I had some symptoms such as night sweats and itching, I w...

Tagged: lymphoma, Lupus

Started by julie in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Shelly Binkley Nov 30.

My Hysterectomy and HRT 2 Replies

I have Lupus, MCT, Sjogrens syndrome and low b/p, my list does grow. I recently had a total abdominal hysterctomy. I was loaded with endometriosis, I no longer has my ovaries, cervix and everything...

Started by Michelle in MEDICAL QUESTIONS. Last reply by Shelly Binkley Nov 30.

Has anybody been diagnosed with lupus with a negative ANA? 34 Replies

I've only met 2 persons, and obviously myself!!! Hope to read from you guys!!!!

Started by Kiara in BLOOD WORK. Last reply by Shelly Binkley Nov 30.

Fibromyalgia & Disability Benefits? 10 Replies

Has anyone in here with Fibromyalgia had success being approved for SSA Disability Benefits? If yes: any helpful pointers? I just got off the phone with an advocate who told me that Fibromyalgia i...

Tagged: input, info, advice, ssa, disability

Started by Vee Marie in OTHER QUESTIONS. Last reply by Shelly Binkley Nov 30.

ANYBODY LIVING IN FLORIDA?? 4 Replies

I AM SERIOUSLY THINKING OF MOVING TO FLORIDA FROM PHILLY. THIS WILL HELP MY FINANCIAL AND EMOTIONAL STRESS GREATLY. SO I WAS WONDERING, IF WE HAVE ANY FLORIDA LUPIES, AND HOW THE CLIMATE THERE IS O...

Started by colsbutterflies in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Carla Giacoio Nov 30.

ANYONE HERE EVERY BEEN ON XYREM / SODIUM OXYBATE

Hello, I was just wondering if anybody here has tried Sodium Oxybate or Xyrem for sleep. I have been going back and forth with this for over a year. But last week when I got my pharmacy newsletter...

Started by Amy Jill in MEDICATIONS Nov 24.

Hello Everyone 4 Replies

My Back Surgery has been post poned, so I really don't know when they rescdudle again My Headake are getting worse so it will be a while before they reschdudle. I have to see my family Doctor on Mo...

Started by Donna J Farr in MISCELLANEOUS. Last reply by Donna J Farr Nov 24.

SOMETHING WONDERFUL IS ABOUT TO HAPPEN

August 28 , 2008 SOMETHING WONDERFUL IS ABOUT TO HAPPEN The What's Up On Planet Earth? energy alerts are offered several times per month by viewing them here. Your financial support makes it poss...

Tagged: TO, HAPPEN, ABOUT, IS, WONDERFUL

Started by Sandy Medine in MISCELLANEOUS Nov 17.

Need Buddies in OHIO 1 Reply

I live near Cleveland in Ohio.... anyone out there in the same area?? I have no friends with autoimmune diseases that live near me! :( Thanks, Joey

Tagged: ohio

Started by Joey in DO YOU LIVE NEAR ME?. Last reply by Michelle Nov 14.

Surgery/Nov 10th 2 Replies

I am so afraid so afraid of this surgery, It is surgery on my back. I have degenerated disc disease in L4 and L5 is just about nothing there. The surgery will take 8 to 10 hours and I just pray eve...

Started by Donna J Farr in I'M IN NEED OF SUPPORT PLEASE!!. Last reply by Donna J Farr Nov 9.

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles

The 12 Principles of Attitudinal Healing ~ by Dr. Gerald Jampolsky based on A Course In Miracles ~ a way to see differently ~ not a quick fix but a process to apply to any situation that ultimately...

Tagged: on, based, Jampolsky, A, Course

Started by Sandy Medine in MISCELLANEOUS Oct 31.