Poems from my heart
October 3, 2008 10:33am
saph
10:07am, October 3, 2008
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About Me
saph
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About Me
Hi, everyone! I was diagnosed with fibromyalgia in 2000and wow! what a rollercoaster ride into hell that first year was. All the things I could no longer do and what do I do now to feel productive? All of my friends that fell away and how do I make new friends when I feel like this? How do I live if I can’t work, and grrrrr… the fight to get disability? Getting my meds adjusted so I had a narrow chance to feel better. How do I live without fibro defining who I am? Sooo many other issues that first year. With my best friend’s encouragement, I finally found the energy to post an online personal in 2001 and met the sweetest, most caring man. Good thing he was so good, because I was hours late for every date. We began living together in December 2001 and got married in September 2004. After having been married to an abusive alcoholic for 28 years, this man was all of what I still say: Everything I’ve always dreamed of and more. He has taught me so much about love, acceptance, trust—to name a few. Unfortunately, the years have not been kind to my dear husband. He has significant cardiovascular issues, was diagnosed with moderate dementia 3 years ago, had radiation seed implants done to treat prostate cancer shortly before our wedding, luckily recovered from renal failure this last June. Just this week, we have learned that his prostate cancer has returned and metastasized into his bone. My rheumatologist is not happy about the level of stress in my life, but my love for him, Gabapentin and the circle of friends praying for us sustains me through that stress
Hi, everyone! I was diagnosed with fibromyalgia in 2000and wow! what a rollercoaster ride into hell that first year was. All the things I could no longer do and what do I do now to feel productive? All of my friends that fell away and how do I make new friends when I feel like this? How do I live if I can’t work, and grrrrr… the fight to get disability? Getting my meds adjusted so I had a narrow chance to feel better. How do I live without fibro defining who I am? Sooo many other issues that first
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Interests
machine embroidery, sewing, lots of crafts, lol. flower gardening and an online role play game: Runescape. Saphirangel is my name on that game.
machine embroidery, sewing, lots of crafts, lol. flower gardening and an online role play game: Runescape.
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Recent Activity
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Journal
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Hugbook
I’m With You
Just thinking about you and hope that today is going good for you:)
Hug
Thank you and God Bless. I really appreciate it.
Hug
Sending a big hug to let you know that you are in my thoughts. I hope you are having a good week. XOXOpat
Hug
HI! I totally agree with you that the worst part is not being able to discuss this with our familys. I feel so alone. My mom and dad don't get how serious Fibro and CFS are, they don't think I should be taking any medication so I have to hide my "wake up" medication from them. My husband used to be supportive but has been mad at me all summer for my illness and having to rest (even though I haven't rested all summer) and he hasn't really spoken to me all summer and ignores me, which makes me so lonely. I have no one to talk to about this. It is a scary illenss with how serious the pain and fatigue are. I can't believe I have to take medication just to stay awake until the evening when I collapse. Im so sorry about your husband. Don't worry about the dust bunnies, who cares? Don't stress yourself about trying to find the energy to clean. That will just make you feel worse. Im sorry the medication I take doesn't help you, that's awful. That is my biggest worry, that it will stop working for me someday and then what will I do? I just hope it never happens. Bless you hon! Love, Amey
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Flower
Sending some pretty flowers to welcome you. I am glad you came out of the corner.LOL Spend some time to get to know us. I hope you are having a good day. XOXO pat
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Photos
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Support Groups
Close Fibromyalgia
m/w/f/58 Diagnosed in May 2000 and one of the few approved for ssdi on first application. Besides the usual, I have lots of muscle cramps. It will be great to meet you all!
Treatments
- Cyclobenzaprine Somewhat Helpful
- Lyrica Working / Worked
- Use a form of this--Gabapentin, and I love it
- Seroquel Working / Worked
- has been wonderful for helping me sleep!
- Zoloft Working / Worked
- has worked well for me
- Hydrocodone Working / Worked
- usually helps me
- Lodine Working / Worked
- Works like Celebrex and Vioxx which my insurance hassled me about.
Close Dementia
My husband has been diagnosed with probable Lewy Body Dementia and has many other heath issues. I have Fibromyalgia. I'm hoping this community will remind me I am not alone here as I am the sole caretaker for my husband.
Treatments
- Seroquel Not Working
- A Catastrophe! With Lewy Body Dementia: "Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. "
- Effexor Working / Worked
- 150 mg. Has worked for several years, but I think it is getting to be time for a change. He cries so easily.
- Aricept Working / Worked
- 10 mg. I noticed an improvement when it was first prescribed 15 months ago, but with the progression of his dementia in that time, who knows now.
- Provigil Somewhat Helpful
- In the beginning provigil was prescribed for my husband, then switched to aricept when the dementia became more pronounced. Provigil did work, but also made my husband very hyper.
Open Caregivers
My husband has cardiovascular disease, recent renal failure (resolved for now), dementia, and a host of other medical issues. Now we learned his prostrate cancer (treated with radiation seed implants in May 2004) has returned and metastasized into the bone.
