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rob
02-09-2009, 06:01 PM
There should be a rule in life. That rule should be that if a person ends up with something like Lupus, then they won't ever get another serious disease because Lupus is hard enough by itself. I have a terrible burning pain in the bones of my right shin and right forearm. My vision is somewhat dim in my right eye. These problems are very familiar to me, and I'm afraid my other disease is rearing it's ugly head.

You know, I couldn't believe it when I was diagnosed with secondary progressive MS last year. Lupus is enough already, don't pile on more, It's all I can do to deal with Lupus, I don't want more. I'm so tired. I've felt pretty good for the past few days. I was writing well, and had a little of my long lost sense of humor come back. Tonight, nothing but fog, pain, opressive fatigue. I would give almost anything to just be reasonably healthy again. I really hate sitting around and letting the "why me" thoughts come into my head. I'm trying to keep that out of my mind tonight. I really don't want to go through another round of IV methylprednisone again. The side effect just plain suck.

As always, thanks for letting me unload a bit here. Talking does help. I hope everyone is having a good evening. Time to take some pain meds and attempt to get some sleep. Goodnight all.

Rob

kukukajoo
02-09-2009, 06:32 PM
Funny you say that. Somewhere I was reading that several people said that autoimmmune things lead to more autoimmune things and that they tend to come in threes!

Why us? What the heck did WE ever do????

I just learned today that my brother's best friend growing up has MS. It is under control but he has his days. Another kid we grew up has it very severe and for a spell could barely function. Not sure of his treatment but today you would never know all he has been thru to look at him....

Anyhow, the MD I am going to is investigating a possible environmental link and I have vowed to participate in all the studies they need my blood for and would encourage others to the same if they can.

Let's organize against this!!!!

Rastagirl
02-09-2009, 07:17 PM
Oh Rob....I'm so sorry for this. It just plain sucks!! :evil:

You're right...Lupus, by itself, is one hell of a thing to deal with...anyone with that alone should be given a free ticket to 'not another disease for the rest of your life'. I wish it were so. I'm sorry you got dealt another disease that sucks too! Wish I could take it away for you.........

It's almost like a teaser when you get those couple of days that you feel pretty good, you start to find your humor again, you begin to recognize yourself, and then WHAM, it smacks you upside the head again. I wish we could smack it back!!

I wish there were a magic pill that would just make all the yuckiness go away...the bone pain...the oppressive fatigue, all the suffering...and leave you with a comfortable, warm, safe and secure feeling, where you wouldn't need to go to the 'why me' place. That's such a lonely place to go where we never get an answer. For a long time, that was the worst part for me....never knowing 'why me'. And no one that could answer it for me.

I wish you didn't have to suffer...That there were more good days than bad for you. I'll pray that this will be a short one and that you'll get through without the IV meds and what comes with them.

I'm sending very gentle HUGS for your physical body, and a bunch more for your emotional pain. Hang in there....we'll be right here when you surface again.

I hope sleep will come....and last for you.... :sleeping:

Fondly,

Lori :P

cherokee993
02-09-2009, 07:25 PM
Rob I so understand you and I agree! I just keep telling myself that it is God's way of telling me how strong I am! :):)

I was diagnosed with Diabetes as a 12 year old and I thought oh my goodness, what am I going to do. I rebelled, I was very sick for a long time, I did better when I was older and got pregnant - I was GREAT then LOL!

Then of course a few years ago got this diagnoses - Undiff. connective tissue and fibro, which I think pretty much is just RA and Lupus but haven't fully manifested yet.

Anywhoo I understand and it stinks and I know you feel yucky sometimes and just wonder why me! But just know you are a strong person, surrounded by love and support.

Heather3188
02-09-2009, 08:06 PM
It's more than unfair or sucky, it's BS. I just don't get how some people have the dream life and a lot of us are in pain every day and then told "it's all in out head" or just "go work out, you'll feel better" it makes me want to beat someone. I have days where I do a good bit of self pitty, but then after that I get up and go back to life. You deserve a day like that every now and again.

Danica01
02-09-2009, 11:05 PM
Rob,

Let me start by saying I am so happy you are letting some feelings out! You are always there for us and now we can be there for you too :) It is not fair that you have two horrible diseases, one on top of another. I bet you have so many more things you have to deal with and so much medicine to keep both diseases under control. My heart aches for you and I wish I could take one of them away and carry the burden for you. You are an amazing strong man and cherokee993 is right, you are not given anything you can not handle. Sometimes it is hard but deep down you can do this and we will be here helping you along the way. Tonight I am sending you happy thoughts and gentle hugs. Feel better my friend and remember,you are never alone :wink:

Love,
Danica

rob
02-10-2009, 03:34 AM
Thanks guys,

I've been up most of the night. This pain down in the bones is such a strange thing. The only way I can explain it, would be like if your bone marrow was a smouldering fire. It's not excruciating pain, but it's constant and really wears on me.

Danica, it's funny, most of my life, I've always found myself in a position where I felt like I needed to lead by example, and not to let others see me falter, even if I really was. Sometimes it's hard for me to talk about just how crappy I feel some days. I'd rather encourage others, instead of complaining about myself. On my good days, it's easy for me to say I don't quit, that I will fight tooth and nail to get through all these problems. Last night, I wanted to just surrender. I surrender, now stop the frigging pain and let me get a little sleep, and let me get on with my life.

I used to be so capable. I did so many things that are now virtually impossible for me to do. I must have climbed Four Peaks a dozen times, I even hiked the Grand Canyon twice in one year, and now I get tired and winded just walking to the mailbox and back. I have such vertigo that I can hardly walk down a flight of stairs without faltering. I'm sorry, it's just been a really long night. I going to lay down and try to get a few hours sleep. Thanks for listening.

Rob

iseedeadmonkeys
02-10-2009, 03:58 AM
Rob, ٩(●̮̮̃̃)۶

Hello, i hope you managed to get some sort of rest and pain releif at some point :P
I was thinking about you last night aqnd what you wrote on here, i agree you kno i often ask that question too these days, but i think i need to think thru the pain, i dont know the future for all of us i really wish i did, i would do anything to make you guys happy and healthy, what i do know is, thank god for this forum, who know where we would be in our lives right now, i feel we have all grown a strong bond, and the newbies that come in i feel like we all take them under our wing, its a really nice thought isnt it?
my marra is on fire atm, but the sun is shining and im thinking hmm i fancy listening to some tunes soon, that always brightens up my mood :D

Love~and~light
my dear friend
Jane
xx

Angel Oliver
02-10-2009, 04:21 AM
Oh Rob,

Sorry to read how much pain you are having and i really hope you managed to get a little sleep (I slept 5 hours but shhhhh dont tell my subconcious) :)

I know it must be so hard to be so sick when at one point in your life you were so active and lived a 'normal' life. I always think to myself, even though it doesnt help the symptoms, that things happen for a reason. Remember the path of life thing i was going on about, just think, if you were a healthy man living that old life, we never would have crossed paths. Since coming on here you have made a difference to my life and i hope in time, i can make a little difference in yours and everyone on here. Im sorry i am not so good with good speeches, but i am sending you gentle hugs. I wish i could take your pain away, but i know i carnt so the next best thing is for me to write all this :)

Love
Angel.xxx

hatlady
02-10-2009, 06:22 AM
Many hugs, Rob....

my SO has MS. Together we're quite the pair - thank heaven I can wield her walker and get it in and out of the car. She can't do more than one step up or down - ramps are our friend. She talks about the "MS hug" as one of her issues - Some days we sit in our respective comfy places in the family room, her with an ice pack, me with a heating pad.

Amazing what life throws at us, no rhyme nor reason. She was the physically stronger of us, now I am. I was the more patient of us, now she is.

Many hug to you -

iseedeadmonkeys
02-10-2009, 06:57 AM
My big sister has M.S, hers has been in remission for wot 17 years now

mountaindreamer
02-10-2009, 07:07 AM
good morning Rob,

I hope you were able to get some good sleep. I am so sorry to hear that you were having such a bad night. Yes, it is very difficult to go from being a very active person to worrying about walking to the mailbox. I try to get past these times by being grateful that I was able to experience the things that I did before this debilitating disease set in.

Angels can't do anything about our medical situation, but they can bring our paths together so that we can broaden our realm of knowledge. Thank you for everything that you do with this group. You are a continuous source of inspiration and I so appreciate you.

take care my friend, I wish you good dreams.

phyllis

narrowboatnutter
02-10-2009, 07:13 AM
dear rob...i am sorry to hear ur news, it not fair that u have m.s too - i am very sorry to hear ur news and i hope they can do something for the m.s quickly....hany on in there and things will get better one day soon - cos it always does, much love an hugs and just think...we have a new star trek movie out soon so thats something massive to look forward too xxxxx

NoodleMom
02-10-2009, 07:16 AM
rob,

gentle hugs to you rob. I know how hard this is for you and im sorry things are rough right now. Wishing I could get out of this bed and kick lupus and kick MS and kick diabetes and all the immune disorder right the the keister. Dang these days are depressing.
Hope ya feel better soon. I wonder if we ever get back to what we know as our reality?

Trying to come up with some witty little ditty but my brain fails me today.
Yeah,

kasey

Saysusie
02-10-2009, 10:57 AM
Rob;
How are you feeling today? You know that almost all of us here agree with you wholeheartedly. Why must we deal with a chronic, systemic disease like Lupus and then have all of these other diseases heaped on us because we have Lupus??
It is so unfair and there is nothing wrong with expressing our frustration, anger, and resentment! I am so sorry that you are experiencing yet another new form of pain. It is hard to explain to some people that there is never a day, never a moment when we are not in some kind of pain somewhere! Others can't seem to fathom the fact that, even in unending pain and constant malaise, we manage to continue to live our lives, continue to do those things that are necessary and, somehow, we continue to find ways and reasons to smile!
You, Rob, are an exceptional person, even amongst us Lupus sufferers here, because you do all of that and also give so much of yourself to help others! So, I am sending you warm, loving cyber hugs and hope that you are able to find some peace and calm...if only for a moment!

Peace and Blessings
Saysusie

TobyJug
02-10-2009, 04:58 PM
Hey Rob,

Hope u feeling a little better...

Chin up mate keep smiling....

lucky7
02-10-2009, 06:09 PM
AWWWW Rob, Im so SORRY for what youre going through :cry: youre in my heart and im sorry for your diagnoses.

Oluwa
02-12-2009, 08:15 AM
Hi Rob..head hugs...

Rest and don't let the mind wander into the stupid hole....better days are soon to come.

Ride the pain out, with sleep, good food, showers, stretch and keep the mind active....movies, reads, phone calls, your cats....

Be well...
Love,
Oluwa