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Thread: Tired of Chasing the Magic Bullet

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    Default Tired of Chasing the Magic Bullet

    I really need to go see a rheumy..... but after 28+ years, I just can't seem to make myself go. I need to try to figure out if I DO or DO NOT have lupus, once and for all. And if it is NOT lupus, then what the hell is causing all this inflammation?

    But I can't seem to get my self to go to any doctor for any reason anymore. The past few years, I've slowly just stopped going, because I just don't care anymore.

    I have not even been for an annual pap smear & exam, along with sonogram (I have endo cysts) for 2-3 years, and no mammogram for even longer.

    I don't even want to go see my regular doc, who is a sweetheart & very compassionate.

    I guess I'm at the point where I am just raising the white flag of surrender. I have been on the borderline of a lupus diagnosis for 28 years, but they won't treat me for it. I am full of inflammation. The Mobic takes the edge off. The Neurontin & xanax helps the pain, to a point. Nothing helps the fatigue, which is incredibly bad.

    I really need to be seen and be treated.........but I seem to have come to a point in my life where I am tired of chasing the elusive "answer" to all my physical issues. I have fibromyalgia, endometriosis, osteoarthritis, thyroid problems, eye issues, carpal tunnel, sleep apnea, high blood pressure, crushing daily fatigue, severe tendinitis & plantar fasciitis in my feet, and on, and on, and on.

    I am sick to death of going to doctor appointments and they never do me any good anyway, so why should I waste my time. I am just too tired to fight.

    I just felt like writing this tonight.......I don't know how it will change the way I feel. Just wondered if anyone else feels this way. I mean, if I have lupus, so what? Can they really give me anything else to improve my quality of life? Sometimes I think so, but sometimes I feel like it's just another big runaround like the 2 years it took for me to get diagnosed with fibro.

    Sometimes I look at the handfuls of pills I take every day (when most of them make me feel like total crap, esp. BP meds & others, which can cause fatigue) and wonder......WTF??? Why do I take these meds that they give me when I still can barely function? What is wrong with this picture?

    I feel like I am doomed to spend the rest of my life feeling like crap......and I have begun to make my peace with that. I've sought help for half of my life and to no avail. I banged on doctor's doors for years and years and they just kept saying OH you are So Close to a lupus diagnosis but just Not Quite. Okay...Whatever.

    I don't often allow my true feelings out. It just bums everyone out including myself, so I always try to cram all the sadness and hopelessness deep down and smother it with smiles and laughter. But every now & then I recognize how truly sad I am that my life has really been such a huge disappointment.


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    Head hugs...I see and read your sadness and hopelessness.

    I wish there was something I could say to make you feel better...make it go away. I only have words of encouragement to say as long as there is life there is hope. Life may not be the party we planned or wanted for ourselves but while we are here we should dance... can find ways to dance...party in our own way....

    Yes, a lot of the medication we take makes us depressed, tired more so but there is a combo that can work. Our disease Lupus diagnosed or not is so individualize no one combo is right for all. Has anyone evaluated your drugs to weed out what isn't necessary, interactions and etc. Maybe you need those tweak...

    Maybe you haven't found the right doctor, who listen, who gets it...we have to keep looking. When I first stumbled in here I felt like you even though I did have a diagnose. I had a new crappy doctor when I relocated. I felt closer to the dirt than a dance floor and I was ready to surrender too...blank, blank this crap.

    Living a sedentary life makes us feel worse, though we hurt while moving some form of exercise is very important. Even if it a stretch routine everyday. Truly the benefit is less pain. I know, I have been there. I stretch everyday, several times and swim in the summer...

    With sleep apnea has any doctor suggested Provigil? It is prescribed for those with just that...for the fatigue. It isn't prescribed for Lupus fatigue though..some doctors will prescribe it for off label use but insurance won't cover it. So check it out.

    Have you heard of the new drug Savella for fibro..inquire about it...

    Even if one hasn't had a diagnose, the Rheumatologist should still treat your symptoms of inflammation...what type of drugs have they prescribed for pain? If they suspect Lupus they could still prescribe Plaquenil...

    Have you tweaked you daily foods? Avoid processed foods, sugar, alcohol...cigarettes if smoke. Al which cause inflammation. Adopt olive oil, flaxseed oil in lieu of regular oils..bright color foods...but not foods in bright colored wrappers (junk). Fish, salmon. Do you take Fish Oils supplements? Food is a big factor in the way I feel.

    Sometimes just tweaking our home regimen can help alot with symptoms from any disease of illness...high blood pressure, sleep apnea, Lupus and etc. Medication is only apart of the answer...

    If you want to share with me, you daily routine, work, eats, exercise and medication maybe I can help you with suggestions, changes and also things to ask your doctor for...

    Do you sleep at night despite having sleep apnea....insomnia, restless nights is a big, huge contributing factor to pain and depression....

    I do think you may need to find other doctors because it doesn't sound like there is a good rapport there...trust and faith in them.

    I am just a keyboard away...

    Me...I am Oluwa..I am 48. I have Lupus, GERD, Sjogrens Syndrome, Gastroparesis, Disk Degenerative Disease...3 spine surgeries...Carpal Tunnel, both hands..right surgery performed, Restless Leg Syndrome, Eczema, Fibromyalgia...and all the other cronies, side dishes..H. Pylori, constipation, nausea, headaches, insomnia, depression, night sweats, rashes and hives from nose to toes. Oh, I don't wear the tape on my nose though..hugs.

    My current drugs...
    Plaquenil, Imuran, Protonix, Lasix, Lortab, Ulracet, Darvocet, Xanax, Lunesta..supplementing with Fish Oils, Super B complex, Iron..

    I don't know how much things have change because of the drugs..I am still in pain, still feel like a turd, fatigue and etc..but I do know because I turned my kaleidoscope a bit, tweaked my thoughts, became my own advocate, have the support of my family here I feel it is indeed a life worth living because on May 23, 2007 I felt there was no hope at all...my life was not worth living. I was a woman full of life, lived life and today my life is 10% of what it use to be. But on that day I found this special place....wehavelupus.com and realized through everyone here 10% was really a life worth living...and that 10% has grown. I change, I adapt..nothing remains constant...in a healthy life it doesn't either..it just goes unnoticed..and change that isn't forced like we are required to do almost daily when ill.

    You'll find a 'sweet spot'...and we can help you. I think you feel you have no control..but you can and we can help with that too....

    We are here for you...tight hugs..,squeeze..
    Keep looking for your wellness, Porchy.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Dear Oluwa......your message touched my heart. Thank you for caring.

    It's just been such a long, long road. I am 53 and first became ill when I was 27. I am so tired. There is so much to deal with. But I will try. I used to be relentless in my search for wellness. I felt such a strong desire to be diagnosed, treated and then living life with the right combo of meds, skipping off into the sunset. Now all these years later, I realize that is not always the case. Illness does not always get treated correctly, diagnoses are not always made correctly. Life is not always "fixed".

    There is a good rheumy in town, he used to partner with my retired rheumy......in fact this guy is one of the leading docs in the world for fibromyalgia research. I will try to get in to see him and see what he thinks regarding the lupus situation.

    I will try to tweak my diet......I usually eat junk because I don't have the energy to fix anything healthy. We eat carry out food alot of the time. I know it's important but when the dinner hour rolls around, I am usually crashing hard and fixing a healthy meal is the last thing on my mind. Alot of times I don't bother to eat breakfast or lunch.

    I am not usually this negative. I keep a smiling face on and am usually a jokester and laugh alot. The only reason I am opening up here is because I feel like I can share my deepest darkest feelings here. I think you guys understand. I don't have to paint on a smile. It's been a long, hard road and now I'm getting older, the hope to find the magic bullet is fading. Now I am well into menopause which also is another factor in how I am feeling.

    Yes, I have sleep problems. Insomnia is a constant battle. Some nights I don't sleep at all. I can sleep better during the day. But then I am out of sync with the rest of the world, and that only adds to my distress. I feel like I don't belong here sometimes, like an alien on this earth.

    My regular doc is a really good guy and he does really care, but for some reason I don't even want to go see him. I think I am just so sick of being sick I just can't stand to go to one more stinking doctor's office.

    Anyway......I do appreciate you taking the time to write, Oluwa. Your words are comforting and you have given me good advice.

    My antique business is my escape.......with the help of my husband, I can lose my sadness when I work on selling my antiques.....I have a passion for them and love being an antique dealer, selling both in a small shop and also online. It gives me a sense of identity (besides being a "sick person").....it makes me feel good about myself and it's something I do well. I hope the day never comes when it's too much and I have to give it up. I am just so grateful for the past 13 years, it has brought me so much joy.

    Reading is also a wonderful escape. I am never without a book. It's one tool I use to get out of myself, for awhile at least.

    Well, I've rambled long enough. Thanks again for your encouragement. I hope I can snap out of this downward spiral regarding seeking help for my illness(es).

    Last edited by porchy; 08-24-2009 at 08:09 AM.

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    hi porchy....i am so sorry you are suffering from these "defeated feelings". What good news that you know of a great rheumy....please try one more time and make an appointment with him. We will all help you get up the energy to make and keep the appointment...so please give it one more try.

    I do agree with Oulwa...i have found the foods with preservatives have a serious negative effect on me. Sometimes, i will cook a big pot of spaghetti, or a roast, then put into individual containers and freeze...this way, when i don't feel well, i can warm up one of the servings and avoid the quick foods....however, i will admit, that sometimes all i want is a fish sandwich and fries....so, i talk big, but i do slide off the wagon....

    porchy, i promise we will help you....please don't give up on yourself....i see you pain in your picture, and i look forward to seeing one with the smile that is who you really are.
    Phyllis

    share a smile today

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    Hi you, Porchy..

    You will, you can....one foot, one step, one page, one book, one healthy meal, one doctor appointment at a time...then aim for a day of changes, then another, then a week...in 30 days you can feel a difference just by stretching and eating fresh.

    No one is going to put you up in the front seat but yourself...So, crawl up and over the front seat and grab the wheel...

    For me, food is a big huge factor in the way I feel. It is a big factor in a healthy person. My husband is healthy, trim, does 5 miles on the rat wheel...and when he has a day of junk he looks lethargic....and when I have junk, which to another isn't junk I am comatose. I say I feel greasy. My fall is Hersheys Plain Bar...one is my limit, times I've had two..and I feel queasy. Knew the out come....but my taste bud said more..

    Salmon I have a 15 minute recipe, interested? Five minute dressing for salads. I know when we are fatigued we instinctively reach for quick energy surging foods...candy, fries, burgers, cakes, Subway, pizza. What they have in common...all are simple carb loaded and high in calorie and fat....but they make us crash even more.

    Any foods I can clean up, cut the time...restaurant food... home recipes..let me know and I can switch it about...

    Hows about Kashi cereal with milk in the morning? Even a protein drink would help. Fruit, cheeses....whole grain bagel. Handful of almonds.

    Many of us are jokester, paint a smile to protect the world, our family from what is quaking inside. We could win Oscars for our performances but that isn't a good life either...we have to find better as your profile signature says We only have one shot at this. There is better...

    Read some more in the forum...we all have different techniques to help deal with this life filled with pain...we hope for remission. Maybe with the right doctor, the right drugs you may find it too...Many here have...

    I dislike going to the doctors too..I dread it...say the same. No more...but in the end, I know if I go I may just feel better. If you do go, when you go...mention the drugs....

    My escape from my illness, from my fog...is the PC. When we stay focused on something it keeps ourselves from falling in the stupid hole. I am happy you have your antiques. I love 'em..but I never know what to buy. I buy a few odds and ends, but nothing that would require a dolly to move it.

    We all care..head hugs...

    Keep looking for your wellness...hugs.
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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    Wow.....I am overwhelmed. Thank you so much for your caring, Oluwa & mountaindreamer. I do have support from my husband, my mom & my aunt, but to have such strong support from people I don't even know..... but I guess you know better than anyone because you have been there. So thank you, truly........for taking the time to respond to my posts.

    I will try. I will try to eat better. I will try to get more sleep. I will try to pick up the phone and call the rheumy's office for an appt. one more time. I will try not to give up, yet.

    It's amazing how powerful the support of another person is. Thanks for giving of yourselves to me. I feel blessed and honored to have received the gifts of your concern & caring.

    I will try.
    Live, laugh, love. We only have one shot at this. ~Author Unknown


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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Porchy,

    I know how you feel. I'm "between" rheumo's right now, but I do have a great MD, and my neurologist is pretty decent. Despite that, I get so sick of Dr's offices, hospitals, tests, meds, waiting, arguing. Sometimes I just want to quit going. I was diagnosed with SLE when I was 36, and MS just over one year ago. I'm 41 now. Sometimes it seems like my appointments are ruling my life, on top of SLE and MS already limiting me.

    When I got the SLE diagnosis, I was a successful businessman, had a fiancee, and many friends. Within 6 months, that was all gone. I lost all hope, I was all alone. I took a fistfull of Xanax I'd been saving up, and washed it down with a pint of Vodka. When that wasn't working fast enough, I got in my car and drove into the path of the first big truck that came along.

    I decided to kill myself and damn near succeeded. The repurcussions and recovery from what I did took nearly 2 years to deal with and fix. After that, I started a new life, in a new place. I've made a couple of friends, and have found new interests and activities that I can handle given the limitations put upon me. One thing I love is antique toys. I have all sorts of stuff, but my real love is antique toy trains. I restore and sell old Lionel trains on Ebay and I have something thats very fun, and gives me a little extra money to supplement my disability pay. I escape into my trains. I also have three cats who are my best friends. I have discovered some very special people here, and I was even asked to be a moderator here awhile back. All these things give me reasons to live, reasons to keep on going to my various never-ending appointments, and take all those meds.

    I gave up, and nearly lost everything, and although I have some really bad days, I have some really good ones too. Sometimes the good days are rare, but they are very much worth fighting for. I know you are in bad place, a dark state of mind. But know that there are others who understand how you feel, and even though they may be someone you may never meet face to face, they can, and do care. Hang in there, you are not alone, and things WILL get better. Thank you having the courage to open up, and welcome to our group.

    Rob

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    Count me in as part of the cheerleading crew too. You can do this Porchy! Life can get happier and better! ((((((((HUGS))))))))))

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    Default P.S.

    I'm unable to tolerate fish oil.....it really bothers my reflux.

    But I do take Theragran-M Premier 50 Plus multi-vitamins (for people over 50) and MSM, which really seems to help alot. I take about 1500mg of MSM a day.

    My prescription meds are: Triavil (3), HCTZ, Atacand, Nadolol (2), Mobic, Levoxyl, Prilosec, Neurontin (3), Xanax (as needed), Vicodin (as needed), Zocor.

    I have read that beta blockers (Nadolol) are notorious for causing fatigue. Neurontin, Triavil, Xanax, & Vicodin can cause fatigue also, but I don't want to give any of these up because even though the side effects are bad, I need them for their intended purpose.
    Last edited by porchy; 08-24-2009 at 12:19 PM.
    Live, laugh, love. We only have one shot at this. ~Author Unknown


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    OMG.......Rob........thank you so much for sharing what you've been through. I want you to know that I appreciate you telling me your story. I am glad you made it through all that, and that you are still working hard to remain positive through your illnesses. I'm happy for your passion for toy trains.... and your kitties too.

    I have 2 tabby cats, 5 year old brothers and 18 pounds each. They have taken over our household, make alot more work for me, but I love them as if they were my very own children. My hubby & I would be lost without these wonderful creatures. Some days, when I collapse on the couch.....just to feel my Tory come up and plop down on my feet warms my heart and brings a smile to my face. There's just nothing like a cat. Micah is my other sweet boy....he's very vocal and can nearly carry on a conversation as he will repsond to any question with a "maowww". ) Anyway....I'm glad you have your cats to enrich your life.

    Abbasgirl......thank you, also, for coming to my aid. I can't tell you how much it means to me.

    Live, laugh, love. We only have one shot at this. ~Author Unknown


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