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Thread: Just need to vent....

  1. #1
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    Default Just need to vent....

    Hi Guys,
    I'm venting today. I'm sorry. I'm in a FLAIR again. I was diagnosed last July and as many of you know have been in and out of the hospital so many times since October that all the ER nurses, and oncology nurses know me by name.

    I'm having a really rough time right now. Not only battling this stupid crap, but with my depression. I'm a work aholoic. I love to work, I love the fast pace challenge my career holds and presents to me. However, since last Monday, I've not been to work. I carry most of my pain in my back and hips. Until the last couple of months I've never had problems with my hands and feet loosing feeling or swelling. My feet and hands now are so swollen just typing this is starting to hurt. The doctor thinks that because the joints and stuff are so swollen in my lower back around my spine that it's pinching a nerve. They called me in a type 3 narc. I hate it. Oxicotten? It makes me feel numb, and spacey and I swear it just makes me feel so weird. I hate it. So I've not taken it anymore since the first pill, and gone back to taking my dilauded. At least it takes the pain to a more bearable state.

    I'm so depressed right now. I have a great boss, who won't let me come back until I can drive myself to work, and stay awake and concentrate. She's more worried about my health then my work. I feel lucky to have this job and work on the team that I do. I have a great family who does anything that I ask for, and even so much more. I have a great new boyfriend who tells me I'm beautiful even though I look like the michelan marshmallow man. He brings me flowers all the time, writes me poetry, even bought me a promise ring that I swear could be an engagement ring (1/2 caret princess cut on white gold band..), but through all this I still feel discouraged, and useless, and wasteful of life. I hate hurting, and sleeping all day. Just getting up and getting to the shower, and back to bed takes all the energy I can muster. Let alone trying to do anything else.

    I don't know what to do. I've overdosed twice on Loratabs. Once was not an accident, and once purely was. I just feel so empty. I feel like life just sucks, and like it's never going to get better. I fell like I shouldn't be here....like I shouldn't matter.
    I've gained so much weight being on this stupid predsione, 28 lbs in 2 months. 21 from January to February and 7 from Feb to March. I go back to the oncologist April 7th. I've been pushing for him to start the cytoxin treatments. I've heard that many of persons with lupus have had tremendous success with pain, and getting to remission with the cytoxin. My oncologist said he'd administer it in the chemo iv form. I have a very sensitive stomach and the pills would just wreck havic he thinks.

    Does anyone have any information about cytoxin? Will I loose my hair? will I loose or gain more weight? what about pain? does it help? what about energy? appetite? I'll take anything I can get my hands on for information.

    I just want so bad to be able to get past 3 weeks without being in so much pain, and having a flair. It's awful. I miss working out, I miss my cute clothes, I miss being able to have a beer with the girls every now and agian. I miss being able to do things and not having this pain and fear of what the next days payback is going to be.

    I need help....I've been seeing a therapist, and keeping a journal. I'm on 60mg of predisone, and have dilaudid, and oxicotten for pain. I'm also on imuran, azapretherine, and plaquinel, paxil, and lunesta...which is for that thing called sleep....what is that? I don't know what good sleep is anymore. I haven't exerience that since I was in the hospital last time...January...I think. I have black circles under my eyes that I swear are permanent...they just NEVER go away. I have lab work done almost on a bi-weekly basis. I difinetly have SLE, I've developed RA, and have no major internal organ damage yet, but am showing signs and symptoms of kidney damage. I've consistenly had UTI's, bladder and kidney infections, and the protiens and enzymes in my kidneys are always above a 7 and have been as high as an 11. Ugh!!!!!!!!!

    I'm sorry to sound and be so depressed. I'm just really having a very hard time seeing the positive in any of this...expecially in life right now. My mom calls and tries to tell me all kinds of jokes, and tell me how lucky I am, and how wonderful my boyfriend is, and how life is good. Things are always worse to us then they really are in reality. I guess she is right...I've always been my own worst enemy.

    Anyways, I'm sorry guys, but you guys I know are warm, and encouraging, and are what I need more then anything right now. People who understand, and know exactually what I mean, and am thinking. Any information and support would be fantastic and I welcome it with open arms.

    If anyone has done the chemo type treatments with Cytoxin or know of another drug that could possible work. I'm up for any information you can give.

    thanks for letting me vent....

    Robin :cry:
    Robin Lynn Byler
    Live, Laugh and Learn....you never know which one someone else is going to benefit from....!
    Newalla, Oklahoma
    robin.byler@hotmail.com

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    Robin,

    I'm sorry to hear that you are in such a low place right now, but don't feel alone because we have all been there at a time or two or three and some may even be there right now.

    Lupus can make a drastic change in your life and even though you may have the best support system in the world, you have to be able to deal with it for you and that takes time. You have to give yourself time to deal with every blow that is dealt to you. Yes, I know they feel like blows and it can be a lifestyle change but not a end to life. Life doesn't end, just a new chapter begins. It might not be the way we planned it but you have to rearrange your plans. I had to and so have many others. You have to now live within your physical means. Is there anyway that you could do some work from home? This may make you feel more productive and pick up your spirits.

    I was on Cytoxan through IV once every three to four weeks for nine months and I did well. I was also on high doses of prednisore which made me gain weight but as I tapered off I lost some. As your health improves, you will be able to taper off too. What really helped me was Plaquenil. It really helped with my fatigue because I used to be really sluggish all the time.

    I'm sure others will be by to give you some great advice and great words of encouragement. Until then... don't give up, this too shall pass. We been there and made it through and you will too.

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    Soft hugs Robin

    Vent away...we've all been in that dark pool and you need to let steam off.

    Medication and treatment wise, I'm on pretty mild stuff. My joints are affected. So I'm taking arthrotec 75 and plaquenil. The plaquenil hasn't kicked in yet so I'm not sure if it will work for me yet or not.

    I wear compresion socks (not the personally fitted ones...those aren't worth a pinch of poop) I buy the diabetic tub socks. They help to keep the foot and ankle swelling down. I put them on before I even swing my legs out of bed.

    Alternate iceing your joints and applying heat. No more than 10 minutes for both. (you probably already know this stuff but what the hey)

    I wear a tensor velcro knee brace. That's the sorce of my swelling. I tried the hindge knee brace and it just caused more problems but the soft ones add the support I need and the velcro straps make it easy for me to get the darned thing off when I need to take a break from it.

    I know you're hurting...but if you keep moving you'll feel better. I had stopped working out when I was swelling and in too much pain. But my doc talked me into working out on my stationary bike on the lowest setting for 10 minutes a day and it really did help. Now I dont let the swelling and the pain stop me...but I do listen to it. It's important to know when to stop.

    Sleeping is another issue. I couldn't sleep because the cold made my legs ache. They would spasm and wake me from a dead sleep. I was tired and in pain all the time. No drugs seemed to help. What I need most was sleep. So I made my bed the best place in the world.

    I bought a memory foam mattress (which I went out to buy by myself and dragged into the house and set it up while crying my eyes out because of the pain), polar fleece bed sheets and satin jammies. The satin helps me to turn over easily and the mattress supports my body well and comfortably and the fleece sheets...well my word...no more cold achey pain.

    I'm babbling on...I hope someone else can help you with your med questions...

    I went from barely being able to walk with a cane to walking well and using my knee brace when I drive and occationally when I have a bad flare.

    My swelling is always lurking...but under control

    Soft hugsss hope you feel better soon.
    Oh look ... a cookie

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    Robin, my heart goes out to you - and my hugs. I know what you're going through, though my symptoms have been somewhat different. I was diagnosed about two years ago. I was in the hospital 7 or 8 times and it's taken a lot of experimentation to find something that works. We're still working on that, actually - and maybe it'll always be a work in progress. Don't give up on the treatments and medication, Robin. There are things that work, and after a long, dry spell, research is being done on new medications for SLE. I've never been on cytoxan (imuran, methotrexate, cellcept - not all at once; also plaquenil, colchicine, prednisone...and more.) Plaquenil makes an enormous difference, as Pretti in Pink says, in my fatigue level. I hope you find the help you need, Robin - don't give in to the depression. It will pass - lupus has a way of coming and going - hang in there. And come here when you need to vent or are looking for a sympathetic "ear." We'll be here!
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hi Robin,

    First of all I wish I could come and give you a big tight head hug…I feel your sadness, your loss like my own.

    Your arms open for my bit of support..ready? Here I go…

    There is life past the pain. Pain is my cougar, who on many occasions takes me down like a gazelle. I wish I had a magic word, a book, a pill that can help with your depression. For each of us, the tool combo to help us up and out is different.

    My take...things that help me...

    I think if we accept our illness we can enjoy our life. Easier said than done. I am a work in progress finding my way too. Accepting IT, Lupus and all its cronies would rid us of a tremendous amount of stress and depression. We have to open ourselves up, our heart, our minds to all possibilities to help us to come to terms with it. Letting go of what once was. To find relief in our grief. To find the beauty in our new me.

    Sometimes just standing, vulnerable in your faith can shed much of the depression. Cry, sob, yell, ask, beg for help...a moment to show how really weak we are, our humility, can actually be our saving. Faith can be our strength. Seek out a religion, a philosophy…I combine Christianity and Buddhism. Buddhism has help me immensely with change.

    I think another deal breaker of the life we had is the lack of control over it. The feeling we have none. A way we can gain our sense of control we need to arm ourselves with knowledge about our disease, our drugs, our lifestyle. Reads such as The Lupus Book by Wallace, Living with Lupus, by Blau or New Hope for People with Lupus by DiGeronimo. Drug info…register at www. PDR.net. Lifestyle..keep a routine, no matter how little it entails. Being it taken a shower at 9am, breakfast at 9:30am, 10am, rest, make the bed at 11am, stretch at 11:30am. Lunch out, a trip to the park..spring is happening most everywhere..something like that till you can tame the beast…I call IT, Lupus.

    We can feel in control by managing our eats...eating for our health, eating to control IT. This could keep us focus, the daily preparing of our foods. Reading how food nourish and protect our bodies...cheesy idea for some..

    Fighting IT… with wishing what was and what won’t be will not score you a win. That is fighting IT blind like…knowledge and patience is key. The ability to look at life, our life differently and enjoy it too.

    Find daily shortcuts to prevent aggravating your pain. Whether it is liquid soap instead of bar soap. Slip on shoes instead of tie. Big handle toothbrushes and make-up brushes. As you can read I have a hard time with my hands and dropping a bar soap, well could send me into a tail spin of depression.. Sheesh… can’t even hold a blank, blank %&*((&*%^#$@’ing bar of soap. Gr-r-r-r-r. Now, I do the pump action…squirt, squirt..simple as that made me a bit happier in life.

    Cute clothes…they have loads of stuff for being full figured. Are you wearing a size too small clothes now…buy a few fittings outfits. Good fitting bra, can lift not only the girls but your spirit too. And can make you look smaller, in and up. Not like a tube, a roll. If you give me an idea of your style, taste in garments I can hook you up with some websites. I shop online for everything…look for free shipping, local stores that would except shipped returns…shoes…free shipping to you and free shipping returns. Sometimes just a cute pair of shoes can give me a smile…new color lipstick?…

    I know it is hard going from an exuberant type of personality to low keyed one. I am living it too. A big loss, eh. During this time I try to seek out those “mundane” things in life for enjoyment. May sound cheesy again but there is something for everyone. As of late I have been thinking of going into Floristry. Would fulfill my need to be creative…fulfill my senses…texture, smell, color. At our local grocer that usually have 3 bunches for 10 bucks. Yesterday after my doctors appointment, stress out as usual… I bought 12 bunches in Easter colors.. Sedated my mind while arranging them, things like that keep me focused on life, life in small form, a flower instead of my illness. It brings me to a calm. And we know how IT loves to feed off of stress. Stress makes IT fat and happy while wreaking more havoc on us. I try to keep mine skinny, maybe I can make IT an anorexic…ya think?


    My take on modern medicine...Pills for pain, for anxiety contribute to depression too. Seems like many you take overlap each other and just maybe creating the melancholy, malaise feelings.

    Paxil - Oxycontin, Loratab aka Vicodin (hydrocodone), Ambien...not a good combo....dangerous side effects...shallow breathing, triple dipple the sleepiness. Can increase the effects of what causes our depression. Slow, tired, comatose like...muddling along, lack of exercise, gaining weight...eating our emotions..deepening our depression. Like a merry-go-around..they feed one another.

    On top of our disease symptoms....fatigue and etc...it gets enhanced. It goes something like this...
    Pain.
    Take a pill.
    Pill increases fatigue.
    Fatigue leads to no desire to exercise.
    Lack of exercise creates excess weight.
    Excess weight creates more depression.
    Depression we stuff the emotion....with lets say a pizza, a dish of ice cream...

    I would evaluate all the medicine you are currently taking. See how they contribute to your depression.

    Sometime our therapist maybe need to be replaced if we are not being directed to a healthier life. Sometimes just listening isn’t enough…

    We mourn the life we had known. We mourn who we were. We mourn our looks. It seems like we are always grieving a loss, eh? You can find your way out Robin…you have many people here who can give you guidance as you know.

    Please don’t quit life. Life wants us all in it. Humans we seek out pleasure in many, many forms...when we can't see it, can't find it, or the old way isn't working anymore we become unhappy, sometimes so unhappy, we get swallowed whole and then we stop looking. Don’t stop looking Robin…

    We all love you. Love is capable without meeting in person. Love is from feeling the words written by you, by her, by him…

    Head hugs…and please never be sorry for having a sad heart that needs to be heard.

    Love,
    Oluwa

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    Hugs are first in order!!! I noticed your from Moore Okla, I'm from Choctaw Okla, maybe we could get each other's emails and chat some time.

    I totally can relate to what your saying. Before I was dx my feet hurt so bad from joint pain I could barely walk in the morning, the plaquenil has helped so much with that, but all my other symptoms are still here. I'm on Imuran x 6 wks, just saw my rheumie she said to give it another month to see if it works or not, between the fatigue, muscle aches and steady weight gain chronic headaches/migraines it's gets very depressing, and before I was dx with all this I was in a horrible car accident which actually induced my sle full blown(prev symptoms 4 yrs), I had to have major surgery and was very depressed from chronic pain, my rhuemie suggested for me to get a book you might want to get it and read it to it's called "Pain my friend" it was really good look at how to deal with chronic pain.

    I too have OD on lortab once but I'm on an antidepress now and it's helped alot. :lol: It sounds like you have a great mom and wonderful boyfriend. Do you have a home church? I too have a closet full of smaller clothes, but I decided to shop and start buying me some cute bigger clothes because I don't know if I'll ever feel like exercising to loose weight, my rheumie recommends it to me all the time, but I told her when I do feel like doing something I usually end up overdoing it and pay for it the next day.

    I was told by my Rheumie to get off my pain meds because they were making me very depressed and I knew this as well and so I did, it wasn't fun at all the withdrawals were horrible :cry: , but I did actually feel better and now my pain mgmt dr has me on ultram er and I only take it when I have a really bad bad day, you know the type when you know nothing else will help you but a pain pill, so you do what you have to do. I hope today will find you somewhat pain free!

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    Robin, hey did this fall off your bathroom mirror.

    Life
    Let me but live my life from year to year,
    With forward face and unreluctant soul;
    Not hurrying to, nor turning from, the goal;
    Not mourning for the things that disappear
    In the dim past, nor holding back in fear
    From what the future veils; but with a whole
    And happy heart, that pays its toll
    To Youth and Age, and travels on with cheer.

    So let the way wind up the hill or down,
    O'er rough or smooth, the journey will be joy:
    Still seeking what I sought when but a boy,
    New friendship, high adventure, and a crown,
    My heart will keep the courage of the quest,
    And hope the road's last turn will be the best.


    Written by the guy with a Mullet-do...

    Love,
    Oh

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    Robin, how are you doing today? Any better? Oluwa and others have given you some wonderful advice - and good reading. The books I read when I was first battling lupus were really helpful, and I still use the Dr. Daniel Wallace book as a reference guide. But, if reading about it is not easy for you right now, just come here and ask questions. You can count on someone having done research on just about any topic you can think of related to lupus (and other autoimmune disorders, for that matter....most of them are represented by someone on this board!) I hope things are settling down for you, or at least that you're finding some means to accept some of the changes in your life. Sending you hugs, Robin, and warm thoughts.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

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    Hi Robin,

    How are you doing? We are concerned about you since you haven't chatted in a while.

    Please keep us updated and I am praying for you.

    Faith

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    Oluwa;
    It didn't fall off of my mirror, but it is certainly taped up there now! I love the words to that poem.
    Actually, 90% of the beautiful words taped to my wall and mirrors have come from your posts! :lol:

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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