Home !!!!
January 22, 2009 4:11pm
HUBBY IS HOME FROM THE HOSPITAL !!!
HOORAY !!
Altho he isn't completely well, his doctors thought he would rest better at home. There …
Goal Completed on Sep 5, 08
kudzu 
10:23pm, January 29, 2009
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About Me
kudzu
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About Me
Was diagnosed in '87 with fibro.Also RA, Sjogrens, and SLE. Still married to my 1st hubby for over 40 yrs. Both of us have health issues but we keep plodding on. Believe there is great Power in Prayer, and relying on my Faith is important to me. Couldn't get thru some days without it. It also takes a good dose of HUMOR to get thru the days and those nights when I can't sleep. Look forward to meeting others here.
Was diagnosed in '87 with fibro.Also RA, Sjogrens, and SLE. Still married to my 1st hubby for over 40 yrs. Both of us have health issues but we keep plodding on. Believe there is great Power in Prayer, and relying on my Faith is important to me. Couldn't get thru some days without it. It also takes a good dose of HUMOR to get thru the days and those nights when I can't sleep. Look forward to meeting others here.
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Interests
Like to crochet.... just sitting in the rocking chair, listening to its comforting creak makes me relax. I make little blankets, and preemie hats for Project Linus to take to the localchildren's hospitals. Also make large fleece laprobes that the teens can use to keep warm while receiving chemotherapy. They get soooo cold during this. I enjoy my flower beds....perennials mainly. Guess I like the Iris the best, but then there are the Lilies, and colorful DayLilies, and then there are peonies in their season.... I just must be careful in the sunlight. So I try to go out at dusk. I read, work crossword puzzles, listen to some talk radio in the wee hours when I can't sleep. I also feed the birds in the winter. I love to see them flitting around eating the seeds. Also put out a hummingbird feeded just as soon as the azaleas have blooms. That's when the hummers start to return to my neck of the woods. I read a lot too. There are so many things you can learn from reading. I try to either pass the books on to someone else, or take them to a used book store and trade them in. I also like to cook. But here lately havn't been doing much of that. I was making grilled cheese sandwiches, my DH called me from another room, and I left.....just for a minute !! Well, the Grilled Cheese FUSED itself to the bottom of the skillet. Now DH is cooking until my foggy-brain clears up :) There is no real support group nearby. I have one Fibro group on line that has been such a blessing to me! They understand how you feel with Fibro, and genuinely CARE about each otherthere. We may not ever see each other face-to-face, but the friendship, the caring, support, and the prayers from this group is wonderful. Plus I can be in my pajamas while I visit. LOL ! This group even talks crochet, and food/recipes too. We have 2 Grandchildren who live with us now. She is 16 and he will be 14 in September. So they will both be in high school when school starts this August. We never thought we would be going thru the Teen years again!! It is often similar to those Terrible Two Years. :)
Like to crochet.... just sitting in the rocking chair, listening to its comforting creak makes me relax.
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Journal
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January 4th; Sunday night
January 5, 2009 1:14am
WoW !!!
Do we have some tallented people here at DS or what ??
First it was some …
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Saturday Night......
January 3, 2009 9:36pm
I have met so many people here at DS who have become friends. Some seem to understand how others feel, are very caring to others, give a little …
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Hugbook
Hug
Hug
good morning...........by giving up on ourselves...........we are giving up on god........love ya..hx
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Hug
random hug time .hope you are ok,love and hugs,helen.
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Prayer
good morning, praying to god on your behalf to continue to give you the strength to carry on..........have a good day...................love ya,...........hxhx
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Prayer
hug time ,hope you are ok,love and hugs,helen.
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Goals
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Support Groups
Close Fibromyalgia
HEy there.... I am 61 yrs old, have a good sense of humor, and believe that there is Power in Prayer. Was diagnosed in '87. Quit work in '92. Couldn't give 100% to the job any more,both physically and mentally. There are many things that I can't do anymore. I miss them, But keep plodding along. :) No support group close. Found friends on-line that support and understand. And can go there in my 'jammies. Looking forward to meeting y'all here.
Treatments
- Aqua Therapy Working / Worked
- The warm water really is helpful. But..it is difficult to get out of the hot tub ! LOL
- Cyclobenzaprine Working / Worked
- Recently started this Rx. Having such sleep difficulties, aches,pains,couldn't get comfortable in bed. My Rheummie thought this would be a great addition to my Rx's, both as a muscle relaxor and the wonderful side-effect of Drowsiness! Started it on July 2nd, '08. Seems to be working well !! Hooray!!
- Cymbalta Working / Worked
- This has been a blessing for me anyway.. painwise. No real side effects. It is expensive, now that I am in the "do-nut hole" and must pay for my Rx's.
- Duragesic Patch Working / Worked
- Used this on a trial basis for the Rheummie. It didn't really help me. Felt lightheaded,headaches, and in general didn't like it.
- Heat Working / Worked
- Applying heat to my many aching joints has been a help over the years.
- Lyrica Working / Worked
- The side effects for me were like having a TIA. Loss balance, falling, speech inappropriate, unable to remember, even some slurred speech. Tried this for 6 weeks, side effects grew worse, not better. Stopped it.
- Neurontin Working / Worked
- fallowing the disaster with Lyrica, tried this. Some sleepiness during the day,no major improvements. After 6 weeks, stopped this to try the CYmbalta.
- TENS Working / Worked
- The TENS unit really helps ! I can wear it under my clothes and it isn't noticable, can sleep in it. It does provide a great relief to my numerous aches and pains. No side effects
- Ultram Working / Worked
- I didn't like the way my mind felt "woozy", tiredness,and itching. stopped this, many years ago.
- Vitamin B12 Working / Worked
- My Internist discovered during regulaar blood work that I was very low. For 1 year, I gave myself injections weekly. While it did raise my levels, I can not say that it really made a difference.
Close Sjogren's Syndrome
My dentist diagnosed the Sjogrens in '94,due to dry mouth and cavities. Had been using O-t-c eyedrops a whole lot. Mentioned these symptoms to the Rheummie,and sure enough I met all the criteria for Sjogrens. Have the punctal plugs which have helped so much! And try different Rx's to get some relief from the symptoms. I'm 61.Believe that there is Power in Prayer, and that Humor is a very necessary thing to make it thu the day. Hope to make friends,find support, and learn more here.
Treatments
- Salagen Working / Worked
- Salagen seems to be a great help to me. Before the diagnosis, I constantly had Tic-Tacs or something in my mouth all the time.I wore lipstick all the time, to soothe my lips. I drank a lot of liquids too. Then the dentist asked if I had been diagnosed with Sjogren's? He gave me a sample pack of the Salagen, and some literature. He even called my Rheumatologist, and discussed his thoughts with her. I have not discovered any side effects with the salagen.
Open Rheumatoid Arthritis
Diagnosed in '87. Have several "cousin", Sjogren's,SLE, Fibro. Many Rx's tru trial and error to find those that help. My Lab work shows "sero-negative". Fortunately my Rheummie treats the symptoms. I am fortunate to have good Rheumie and Internist who work together. Often I don't know which one of my diseases causes the problem. Am 61 yrs old.Believe there is Power in Prayer, and a good dose of Humor helps. Plus a good rocking chair is handy when you can't sleep.
Treatments
- Celebrex Working / Worked
- Altho As a child/ young adult I had had side-effects from any Sulfa, this turned out to be a drug that I could take. Figure that ? There don't seem to be any side-effects..no ulcers in mouth/nose, rash/itching,throat swelling/ none of the side effects. It has become costly for me tho,as I am in the "donut-hole" and must pay for my Rx's. So I am going to change to a drug that is a generic, an "oldie-but-goodie" hopefully it will do a good job with my joint pain. Will try any way.
- Folic Acid Working / Worked
- This seemed to be a great benefit while taking MTX. I took it daily. Since my MTX is discontinued right now, I am not taking it.
- Methotrexate Working / Worked
- MTX works for a while,12 months or so at a time, then I must discontinue it for several months. The side effects outweigh the benefits.I am not taking it now. It was one of the first drugs that helped my joints. My hands do not look like I have RA.And knees arn't worse. I did find that the injections didn't make me feel as bad as the pills. Also taking Folic Acid helps. It is a very low cost drug. Not much $$ for the drug company. Supply and demand.Had to get it compounded for my use,
- Prednisone Working / Worked
- After trial and error, I have settled on 5 mg daily. When I have a bad flare, then a dose pack can help "charge my batteries." But last time it took 2 dose packs before I received any benefit. I don't want to take a larger dose than necessary due to the side-effects. In '05 I had cataract surgery due to the accumulation of predisone over the years. And my bone density is lower than it should be.
- Remicade Working / Worked
- In 2002, I received Remicade Infusions at a hospital. I went as a 23 hour patient. On the 6th Infusion, I had a full anaphalactic reaction to it. BP dropped, Hives , throat swelling, difficulty breathing, and so on. Fortunately I was in the hospital, and they were able to take care of the situation. I stayed overnight just to be monitored. Since this, both of my doctors do not want me to risk taking any of the other biologics ...as they are "cousins" to each other.
- Tylenol Working / Worked
- This has always been an "oldie-but-goodie" for me. But it can not always be taken with some of the other drugs. My doseage was never enough to cause Liver problems.
- Zostrix Working / Worked
- Oh Yes!! This topical has been very helpful to me over the years. I found that I prefer to use a form of capsaicin that is a "Roll On" rather than a cream. Hands don't touch it. So no danger of getting it near my eyes.
Open MRSA
I am not the person with MRSA in my family. My husband's upper lip, lower lip and mouth area are extremely swollen. He looks like he was hit with a 2x4. Plus this is very painful. He is receiving IV antibiotics.....Vancomycin.His doctors believe that this will stop the MRSA, and he will soon go home. This started from shaving with a dull razor, which caused razor rash. Even with oral antibiotics, it only grew worse. I am concerned because this is on his mouth.....
Treatments
- Bactrim DS Working / Worked
- Prior to the results of the culture, he was given Bactrim,and Acyclovir, in hopes these would work on what ever was causing the swelling on his mouth. This was given on Monday ( day 3), and Wednesday ( day 5 )he was admitted to the hospital.Both doctors called it a "staph"
- Vancomycin Working / Worked
- On Wednesday (day 5)the culture taken on Monday (day 3) showed it was indeed Staph, MRSA. He was admitted to the hospital for IV antibiotics, Vancomycin. This is given every 12 hours. The swelling on his upper lip/mouth is growing worse, as is the pain. His speech is not readily understood,due to swelling. And eating is difficult. There is room on the R side of mouth to insert a straw.
- Washing Working / Worked
- We wash hands anyway. But now we washed hands in earnest. Using the "gel" provided by the hospital. At home, prior to hospitilization, we used GermX, and antibacterial soaps. I am not sure this will halt MRSA, but at least it will keep it from spreading.
Open Sleep Apnea
Started snoring LOUD about 3 years ago. So loud, it would wake ME up !! LOL Was sent to an ENT, he checked nose, and so on. He decided before he did any sort of surgery to open sinuses, that I have a sleep study done. SO I did !! Altho the study shows that I have mild apnea, it also proves that I sleep with my mouth open, jaw hangs down,airway closes, and I snore !! Lovely discriptions,huh?? So got the Cpap and a full face mask, and slept happily ever after.
Treatments
- CPAP Working / Worked
- Since I sleep with my mouth open, I use a full face mask. IT covers from my nose,to both cheeks, and to the chin. THe air from the Cpap keeps my airway open,and no more snoring. Periodically I go to the Sleep Center and have a check up.Things are working fine
- Flexeril Working / Worked
- Flexeril works great for me !! It helps with my aches and pains helping me to get more comfortable and to fall asleep easier. My RHeumie prescribed this for me. SHe said...Hmmmmm Flexeril will help your joint aches and pains....and the side effect of Flexeril is DROWSINESS !! SO that is what I take at bedtime. The side effect of being drowsiness is just what the doctor ordered !! LOL
