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rlbyler
03-18-2008, 01:22 AM
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:

Pretti in Pink
03-18-2008, 05:15 AM
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.

sits_inthe_corner
03-18-2008, 05:45 AM
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.

mnjodette
03-18-2008, 09:12 PM
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!

Oluwa
03-19-2008, 09:37 AM
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

morning star
03-19-2008, 10:53 AM
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! :)

Oluwa
03-19-2008, 06:59 PM
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

mnjodette
03-20-2008, 02:39 PM
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

Faith
03-23-2008, 11:24 PM
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

Saysusie
03-24-2008, 08:21 AM
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

rlbyler
03-25-2008, 02:22 PM
Hi Everyone -

I'm checking in. I've been back to work and home again. It's awful. I'm still experiencing numbness in my feet and often times in my hands. My dr seems to think it could be a pinched nerve due to the swelling in my back and hips. I'm not sure. I finally gathered enough strength and courage to go to the mall and buy some new jeans yesterday. I've not ever worn a 34 waist jeans. I've always been about a size 8-10 maybe an 11. But a 34? That to me is soooo depressing. I look in the mirror and I just cry. This morning I woke up and actually starting freaking out because I couldn't feel my feet, or really anything from my knee's down. After awhile that tingly feeling kinda came around. Their a redish color like i've been dancing in the snow.

I can report that the wonderful boyfriend gave me a 1/2 caret diamond solitare promise ring. It keeps me going. It's so pretty. He's so great. I change my mind and cry and get depressed and change clothes 10 times before we leave...and he still stays around...tells me everythings going to be okay, and that he loves me and I'm great just the way I am. I swear he's either a figmen of my imagination, or the greatest thing next to chocolate God's put on this earth! ha...ha...

I'm convinced that you guys have to be angels. You guys give me so much hope, and encouragement, and make me strive to just get out of bed some mornings. Just thinking of your words, and thoughts are so wonderful. Thank you!

I see a Dr. Amy Schultz, in Norman on Thursday, she's supposed to a great rhumie...I hope she can do something to help with the pain management part. I'm getting very discouraged with the oncologist. I've had a couple of very percistant and awful infections, a UTI, Bladder, and Kidney, and he won't do anything. I know my cell counts have to be low again, because I'm sooo tired. I'm on plaquinel and it hasn't done anything for me. Anyone got any suggestions? I'm up for anything. I am eating better. Lots of fresh fruit and veggies, salads, grilled chicken and fish. I guess it's useful that the boyfriend is a chef...!

I'll check in after my appointment on Thursday. I'm really pushing to start the Cytoxin treatments after my next appoitment. I'm told and the research I've done said that the improvements lupies make is wonderful, and it is a difinite path to remission. Which would be heaven!

Hope you guys are doing well, and things for each of you wonderful. I hope Easter was filled with lots of chocolate bunnies, and lots of catbury eggs!

hugs and lots of love.......

Robin

Saysusie
03-25-2008, 03:33 PM
Hi Robin;
I'm sorry to hear that you are not doing as well as you'd like, but happy to hear about your boyfriend and the promise that he's made to you. You are right, in that arena, you are very lucky :lol:
I am a size 10 and in men's jeans, I wear a 34" waist. I think that men's sizes are so different from ours. They do not have to take into consideration the hips and butt that they have to get by before going to the waist. So, don't be too discouraged by a 34 inch waist. For women, I would say that still computes to a size 10-12 because when I buy women's pants/clothing..I still wear a 10-12!
I hope that your new doctor is more responsive to you, especially with your chronic infections. Let us know how your appointment goes. Don't give up on the Plaquenil. It affects each of us differently. Some people can feel the effect withing 2-3 weeks, others will not feel any effect for 4-6 months. If you've been taking it longer than that, then you probably need an immunosppressant to take with it (Cytoxin is an effective treatment with Plaquenil). I hope that the Cytoxin does start you down the path of remission. I wish you the very best!
Keep Us Posted.

Peace and Blessings
Saysusie

rlbyler
03-27-2008, 09:59 PM
Hi Everyone!!!!

Hope everyone is doing well, and resting throughly! So I'll start with the good news first, I got to see my engagement ring last night!!!! It's a 1/5 caret emerald cut trio w/bagettes...and the wedding band is a .5 caret channel setting with princess cut diamonds! Now if my dang dad would hurry up and get home...Adam can do the "traditional" thing, and I can get my pretty little ring on my fat finger!!!! I have to say, (i know this is going to sound a little mean and selfish) that I'm really fighting back the urge to just run out my door and scream to the world..."Ha..ha...I got it and you don't! Take that all you mean girls in hs, that made fun of me b/c I didn't have the "cool" clothes!" I know...I know...but I'm so proud of Adam, what he is and what he means to me. We have set a date...August 8th, 2009! So you guys better save all those frequent flyer miles.....I want your pretty little faces at my garden weddng!

Okay...so I saw Dr. Schultz today with my mom. She seems very very knowledgeable, and very willing to be aggressive and direct in dealing with pain management and getting thing with IT under control. She did diagnose me, based on physical exams, and blood work, with Fibromaylia, (i hope I spelled that right) and possible degenerative issues causing the tremendous amount of pain in my back and hips. She's going to do further blood work, and MRI's to begin ruling things out and find a direct path in which things can be dealt with. She started me on a new nerological mediciane cally lyrica? Anyone have any idea about this one? She said it's a relativly new medicine, that is supposed to lessen the sensitivily of my nerve endings, and help with the cronic sleeping problems. I don't know. She gave me a trail sample before I spend the money getting the script. What kind of stuff do I need to do to help keep things under control on my side? Anyone got some information? I know what Fib. is, but other then the basic's nothing really.

Degenerative issues haven't ever run in my family, and she's kind of surprised that the pain is so significant. Although, what's ment to be will be....you know? I think she wants to wait on the Cytoxin treatments, under we get the results of the blood work, and the MRI's done. We also can't do much until we get the infections back under control, and possible gone. Soo.....back to square one again.

I'm reading more and more how important it is to have a routine, and a regimine. I'm also reading that stress, and bad eating habits are an irritant of flare ups....is this true? I'm seeing this with my own life and experience.

Anyways....Just to give you guys the update and keep you informed!!!

I send love and hugs to all of you.

Robin

redlily14
03-28-2008, 07:17 AM
Hi Robin,

I'll be emailing you shortly..:)

Rochelle

morning star
03-28-2008, 08:19 AM
Congrats!!! on your engagement. Thats very exciting. I'm glad your seeing Dr. Schultz I've heard she was a good Dr. I've been on Lyrica before it did wonders for my peripheral neuropathy, then my insurance changed and my new insurance denied it until I tried something else so I went on Neurotin and had horrible reaction of pitting edema, so now I'm on Zonegran, it's working well so far. Well gotta go for now, but just wanted to say Congrats!!! it's an exciting time in your life. :D :D

rob
03-28-2008, 08:51 AM
Congratulations Robin!

I can tell you are just like a little kid with a big secret, bursting at the seams just waiting to tell the world. You and I have shared some of our worst moments here. It's really a nice thing to see you sharing one of your best moments this time! I'm so happy for you. Marriage, and healthy relationships, can be hard work. But with two peoples hard work, love, and devotion, comes rewards that cannot be measured. Besides, if it was easy, everyone would be doing it! I wish you and your new Husband to Be, (how do you like the sound of that), nothing but the best. This is great news! I'm off to the VA for some volunteer work. I'll pop back here and say hi again tonight. And again, congratulations.

Pretti in Pink
03-28-2008, 05:37 PM
Robin,

Congratulations on your upcoming nuptials, that is always such an exciting time in a gals life. Caution, don't let the planning stress you out to the point to where you are too sick to enjoy the journey to the altar.

Keep us posted and again, congrats and glad to see you soooo happy!

Saysusie
03-28-2008, 07:57 PM
Many congratulations Robin!

Saysusie

mnjodette
03-29-2008, 05:50 AM
Pop! That's the sound of a champagne cork popping! Congratulations, Robin...exciting news! I hope you have the wedding of your dreams (but let others help you plan....you wouldn't want to go into a flare...that would put a damper on your fun!) I hope you can post some pix after the big day...we'd love to see you and your new hubby in your finery! {{{{{BIG HUGS to you}}}}} God bless.....

Jody