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  • Image of wami

    About Me

    I am married to the most kindest, patient and wonderful man, seems like I love him more and more each day. I have Lupus and Fibromyalgia (amongst other things) and trying to cope. I am caring and easy going. Looking to meet people who understand what I'm going thru, to give and get more knowledge, understanding and support.

    Interests

    I love music, watching movies, some reality shows, medical shows, watching sports. Like doing word puzzles, love to spend time with my husband, love to meet new people, love to laugh.

  • Recent Activity

    • Sorry, there is no activity in the My Activity feed.
  • Journal

    • Just Love Being a Guinea Pig

      Mood July 21, 2008 8:18am

      So I forgot to put this in the last journal entry. When I went to Dr. House last Thursday and told them and showed them how bad the PICC line was …

    • Journal Entry for July 19, 2008

      Mood July 19, 2008 9:59am

      Got my doc to agree on taking it out and went and had labs done and got it out....yay. Except for the fact that my arm is killing me and there are …
    • Journal Entry for July 16, 2008

      Mood July 16, 2008 10:10pm

      Everything is so sad and messed up.

       

      Well I generally covered what is going on with this darn PICC line, and it just sucks. No one will pull it …

    • Journal Entry for July 16, 2008

      Mood July 16, 2008 4:37am

      Okay, so a lot has been going on. Nothing has been going as it should and this PICC line has been NOTHING but a burden, nothing but complications, …
    • Journal Entry for June 20, 2008

      Mood June 20, 2008 1:50pm

      So the home healhcare nurse called today and set up time since we all know when I am going into the hospital. They are calling me at the beginning of …

    Read Journal

  • Hugbook

    Give wami a hug

    • Hug

      From WJGonza Tuesday

      Hugs

    • Hug

      From avaloninheart Monday

      I did wear sun screen. I have VERY pale Irish skin so I wear sunscreen every day. It was just the sun, heat, stress, walking, carrying all the gear, no help. It was just too much, but I got it done. :) The flare is gone except for the mirgraine. Thanks for the support. :) I hope all is well with you.

    • Hug

      From ToniCB Monday

      Welcome to our group, you will find lots of hugs here and all the support you could ask for. We have the most wonderful and caring group of people here, and they will give you any help or support you may need. Love and hugs

    • Hug

      From Jennijem Monday

      Hi, Sure hope this day gets better for you. Love and hugs, Jenni

    • Hug

      From avaloninheart Sunday

      Still tried and in a minpr flare cause of the sun, but I'm ok. I am reasting today. I hope as is well with you.

    Read Hugbook

  • Goals

    Progress

    15 %

    Goal End Date is Jun 20, 08 34 days ago.
  • Support Groups

    • Close Fibromyalgia

      I have pain almost everywhere. The main and worst pain...my RLQ (abdomen), R side, R lower back, R hip, and R leg. It is constant and always severe. I also have constant headaches always R sided.

      Treatments

      5-HTP Considering
      Aqua Therapy Not Working
      Celebrex Somewhat Helpful
      wouldn't really work unless used in conjuction with another med
      Cyclobenzaprine Somewhat Helpful
      Cymbalta Somewhat Helpful
      not much, but does help with headaches/migraines
      Duragesic Patch Not Working
      too many bad side effects and did not help pain at all
      Heat Working / Worked
      sometimes
      Hydrocodone Somewhat Helpful
      Lodine Not Working
      Lyrica Too Soon to Tell
      just started and working my way up to 150mg per day, taking place of cymbalta
      Morphine Somewhat Helpful
      sometimes
      TENS Somewhat Helpful
      Vitamin B12 Considering
      this and also B2, along with Melatonin and others
      Zanaflex Too Soon to Tell
    • Close Lupus

      Have pain all the time. Have fevers on and off each day. Hair falls out and having mouth problems, arthritis, gaining weight without having an appetite or eating, lymph nodes always swollen, rashes, stess from being sick, financial problems, lots of other things

      Treatments

      Plaquenil Not Working
      may be put back on it
      Azathioprine Considering
      I need something that will actually help
      Cellcept Considering
      need something that will actually help
      Methotrexate Considering
      want to be put on but rheumy hasn't put me on yet
      Plaquenil Not Working
      don't feel as though this is working at all
      Prednisone Not Working
    • Open Chronic Pain

      I have pain almost everywhere. The main and worst pain...my RLQ (abdomen), R side, R lower back, R hip, and R leg. It is constant and always severe. I also have constant headaches always R sided. Also have spinal stenosis.

      Treatments

      Hydrocodone Somewhat Helpful
      Hydrocodone Somewhat Helpful
      Cymbalta Somewhat Helpful
      helping more with headaches
      Dextropropoxyphene Not Working
      Duragesic Patch Not Working
      made everything worse...had such bad side effects, will never use again
      Heat Working / Worked
      helps sometimes
      Hydrocodone Somewhat Helpful
      Hydromorphone Somewhat Helpful
      Morphine Too Soon to Tell
      Naproxen Not Working
      Oxycodone Not Working
      Physical Therapy Not Working
      TENS Somewhat Helpful
    • Open Chronic Fatigue Syndrome

      I am always tired and fatigued. I don't or can't sleep too much, no matter how hard I try. I realize it doesn't help anything and it would help if I could.---Found out today (12/20/07) that I have 3 different forms of chronic fatigue---reg (I guess), Epstein-Barr, and a version that apparently is European. That's why "I feel like crap", according to my doc.

      Treatments

      Ambien Somewhat Helpful
      Still can hardly sleep/insomnia
      Rozerem Considering
      decided not to get due to side effects
      Xanax Working / Worked
      doc up'd dose and wanted it for sleep and anxiety
      Zanaflex Working / Worked
    • Open Migraine Headaches

      I have suffered with migraine headaches since childhood. Gotten worse since gotten older. Constant headaches/migraines. Working on treatments to make it better.

      Treatments

      Fioricet Somewhat Helpful
      Nerve Blocks Not Working
      Topamax Working / Worked
      took for 4yrs
      Ultram Not Working
      Zomig Working / Worked
      works better than Imitrex, Maxalt, Relpax, Amerge, also use Goody's Powder or Excedrine Migraine when needed
      Atenolol Somewhat Helpful
      supposed to be a preventative, but I don't know, does help with blood pressure, but mine is usually low anyway
      Avoid Certain Foods / Chemicals Working / Worked
      Botulin Toxin Not Working
      Cymbalta Somewhat Helpful
      Dextropropoxyphene Not Working
      Excedrin Somewhat Helpful
      Fioricet Somewhat Helpful
      Imitrex Not Working
      Inderal Somewhat Helpful
      Keppra Not Working
      anti-seizure meds for preventatives, also have used Topamax in the past (for 4 years), used Neurontin in the past (2 different times) and it did not work
      Lodine Not Working
      Nerve Blocks Not Working
      Promethazine Working / Worked
      helpful
      Seroquel Not Working
      Stadol Somewhat Helpful
    • Open Dizziness & Vertigo

      I am almost always nauseated, and never have an appetite. I get dizzy often, pretty much everyday, just off and on...drives me crazy sometimes

      Treatments

      Promethazine Somewhat Helpful
      Promethazine Somewhat Helpful
      took it for so many years for the nausea that it just stopped working, also is helpful with migraines
    • Open Arthritis

      wami hasn’t entered any details for this support group.
    • Open Raynaud's Disease

      wami hasn’t entered any details for this support group.
    • Open Sjogren's Syndrome

      wami hasn’t entered any details for this support group.
    • Open Anxiety

      Full of stress, worry and anxiety all the time, sometimes having chest pains, headaches, etc

      Treatments

      Breathing Exercises Working / Worked
      sometimes
      Breathwork Working / Worked
      sometimes
      Klonopin Working / Worked
      used in the past 4x a day (story with this one)
      Positive Thinking Somewhat Helpful
      try to think positive, but hard to
      Xanax Working / Worked
      take everyday
    • Open Family & Friends of Bipolar

      wami hasn’t entered any details for this support group.
    • Open Health Care Reform

      Please refer to my journal entries on Sept 27, 2007 and Oct 29, 2007.

    • Open Endometriosis

      Treatments

      Lupron Too Soon to Tell
      GYN thinks I have Endo and thinks the Lupron will greatly help my pain. It was either Lupron or surgery and didnt want surgery--long story. I really hope this does work and I get relief very soon.
      Mirena Not Working
      Hurt so bad. Only had for a month. Made everything much worse.
      Surgery Considering
    • Open Mononucleosis

      Just diagnosed today (12/20/07) with Epstein-Barr. Have had an enlarged spleen for such a long time and lymph nodes swollen for almost 2yrs and doc says it is all from EBV. Always extremely tired and fatigued.

      Treatments

      Famvir Too Soon to Tell
      doc said this is also used for cfs but will take years before I will feel better.
    • Open Asthma

      Treatments

      Advair Not Working
      made asthma worse, couldn't breathe when used this
      Albuterol Working / Worked
      used in the past since was a child all the way until a few years ago when switched to Combivent
      Combivent Working / Worked
      was on for several years until summer 07 switched to Proventil HFA when had Bronchitis and fluid in lungs
      Duoneb Working / Worked
      now have a nebulizer
    • Open Gastritis

      Treatments

      Nexium Somewhat Helpful
      took in the past and also just recently put back on, been taking for about 2mos and haven't really noticed any changes
      Prevacid Somewhat Helpful
      took in the past
    • Open Irritable Bowel Syndrome (IBS)

      Treatments

      Bentyl Working / Worked
      took in the past
      Colace Working / Worked
      Miralax Not Working
      Probiotics Considering
      considering for several ailments
    • Open Anemia

      wami hasn’t entered any details for this support group.
    • Open Depression
      Type: Clinical (Major) Depression

      Both Hubby and I have depression because of everything going on and NOT getting better despite all our efforts.

      Treatments

      Celexa Working / Worked
      took in the past
      Cymbalta Working / Worked
      currently on, was prescribed for my Fibromyalgia and Migraine Prevention, but I'm sure it helps with the Depression too
      Music Working / Worked
      music helps me get by
      Paxil Working / Worked
      took in the past
      Positive Thinking Working / Worked
      try to think positive
      Psychotherapy Somewhat Helpful
      didn't really help much
      Support from Friends & Family Working / Worked
      love, support and encouragement from hubby
      Zoloft Working / Worked
      took in the past
    • Open Alopecia Areata

      CAN'T STAND IT!!!

    • Open Bedrest

      Bedridden atleast 80-90% of the time since 2/19/05-----Read all about it in my very first journal.

    • Open Degenerative Disc Disease

      Been diagnosed in the past with DDD, Spinal Stenosis, Arthritis in spine and bulged disk. Have had C-spines, epidurals, and other back procedures done, along with PT and aqua therapy and nothing has helped.

    • Open Other Eye Problems
      Type: Strabismus (wandering eye)

      Also have near-sightedness, was born blind and have had 3 eye surgeries. Only can see or focus out of one eye at a time, can switch anytime, but only one at a time.

    • Open Dry Eyes

      Sjogrens Syndrome//"severe" per eye doc

      Treatments

      Restasis Too Soon to Tell
      per eye doc will use forever
    • Open Urinary Incontinence

      Urgency/frequency, have to go constantly, even right when finished as getting up, so hold it until bladder really hurts otherwise would be there all day and night....aggrevating.

      Treatments

      Detrol Working / Worked
      took in the past, insurance would not cover and doc didn't want to give anymore samples, take nothing at this time, try to hold it as long as I can until bladder really hurts
    • Open Stress Management

      Treatments

      Music Working / Worked
      music helps me get by
      Patience Working / Worked
      trying, better then used to be
      Xanax Working / Worked
      for stress and anxiety
    • Open Rape

      Raped Feb 99 which led to a lot of things, std (chlamydia), a lot of other things, even up to a pregnancy (first and only), then to a forced abortion which was ABSOLUTELY NOT my decision and wasn't ever allowed to grieve. Both are tramatic, but I think the abortion moreso, don't know.

      Treatments

      Psychotherapy Not Working
      never worked
      Rape Counseling Not Working
      never worked
      Talking Not Working
      no one wants to hear about it so I don't talk about it and almost used to it. never goes away.
    • Open Infertility

      Can't get preggy and some diseases that I have prevent it. Feel like the most precious thing in life is being taken from me and hurts so badly.

      Treatments

      Adoption Considering
      hubby and I have discussed this several times and want to but also want our own too.
    • Open Shingles

      Just diagnosed yesterday (01/24/08) with shingles. I am guessing it is with everything else. Known for years that I have HSV2, but diagnosed recently with not only HSV2, but HSV1, HSV5 (EBV), and HSV6. Also was diagnosed with Coxsackie B4 Virus. Very depressed, just cannot get better no matter how hard I try.....

      Treatments

      Famvir Working / Worked
      using for all these ailments as well as for cfs doc said it will take years before I will feel better. am on 1gm 3x daily he is worried about my kidneys so getting weekly tests for 3wks---took Valtrex for years when had HSV breakout (ONLY AFFECTED AREA WAS AND IS L HAND MIDDLE FINGER). took until recently ins didn't cover anymore, changed to Famvir
      Prednisone Too Soon to Tell
      on this for 10days to see if it will clear up if not doc is hesitant but will have to use a picline---------made me so sick, was on a really high dose and was not titrated down and got really sick, asthma got bad and then was put back on for another 2wks and asthma and chest pains were bad, made me sick and my primary said to say I am allergic so will not be prescribed it again....took for years and for short low doeses was fine...will not be put back on again, already sick enough
      Zovirax Too Soon to Tell
      changed from famvir to acyclovir for above treatments
    • Open Bereavement
      Type: Loss of a Relative

      I joined because of my grandmother, who is passing away. I am very sad and angry that I can't be there, and overall I am not taking this well at all. I am also grieving my baby, I wasn't ever allowed to grieve before and now it's just coming out with the grief for my grandmother. I'm not ready to let go of her, but I know she is going to a much better place. I am now mourning my mother, even tho she is still here, she really isn't, because she refuses to be.

      Treatments

      Crying Too Soon to Tell
      Getting Angry Too Soon to Tell
      Music Working / Worked
      Prayer Too Soon to Tell
      Remembering Working / Worked
      Support from Friends & Family Working / Worked
      Talking Too Soon to Tell
      Time Too Soon to Tell
    • Open Polycystic Ovarian Syndrome (PCOS)

      Well I've been seriously sick for almost 3 1/2 years and trying desperately to get well. Previously my GYN thought I probably had Endo, but now since the Lupron didn't work and I have ALL the signs of PCOS they are finally testing me. I've been asking for this for a long time and no one would test.

      Treatments

      Aldactone Working / Worked
      took this in the past when was a teenager, want to be put back on it soon.
      Depo-Provera Not Working
      cannot take depo
      Lupron Not Working
      didnt work but loved the no mensis for 5mos--since this didnt work for the Endo if I had it this is one of the treatments they use for PCOS also. I will find out in July if I have PCOS or not--5hrs or more of testing--will be off of the Lupron for 2mos at that point.
      Oral Contraceptives Not Working
      cannot take bc pills
    • Open Families & Friends Of Addicts

      wami hasn’t entered any details for this support group.
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