Bad Day

mela · Tadpole Joined: 04 Jul 2008 Posts: 18

Hi All,

Hope you are doing well and if not, doing your best to hang in there. I am one to avoid whining, complaining or anything in that category, but I have found that sometimes the only way to get through the worst of days is to have a session of what I like to call "verbal vomit".

I have been with on again/off again ankle pain, knee pain and hand joint pain since October 2007. The joints are swollen, red and hot to the touch. My doctor is on maternity leave and my next appt is in September. I have been through multiple med combinations throughout the years but my doctor and I have seemed to reach a point where no combination is working. I am currently on Humira and methotrexate and was most recently on Orencia infusions.

Today just happens to be an extra bad one, I am at work and I cannot stop crying. I work in a lab so I have a combination of desk work and lab work. Today I have lab work to do and I cannot bring myself to get up from my desk. I am so sorry this email is so long I just need some words of encouragement from those who know what it feels like when your joints just do not want to cooperate and you feel so defeated.

I know tomorrow will be worse, the same or better, so all I can do is make it through today. I do not know anyone else with lupus or any other autoimmune disease so you guys are the only group that I know will understand what it is like to have one of those days.

Thank you for letting me have my release, I have to say that being a memeber of this board provides me with a sense of comfort. I appreciate any feedback.

thanks guys and girls! Mela

Oluwa · Posted: Thu Jul 17, 2008 6:47 am Post subject:

Mela..head hug...

Now take a deep breath in, hold and exhale through your nose slowly..one more time...and again....

Your verbal vomit was hardly a burp...you can vomit on us. I call it telling my story.

I don't want to tell you to suck it up...or encourage you to be strong. I think you need a sick day..today. Can you leave for the day? Take the afternoon off.

Our health should come first.... without our health, no work..no work, no money..more stress, more sick..ah the vicious circle that Lupus puts us through...

Go to your supervisor...manager..and tell them how you feel...heck ask for Friday off too, to rest up over the weekend.

Do they know you have Lupus? If they did, are they more sympathetic to your needs? If they don't, do you think you should tell them...would it jeopardize your employment?

Breathe...

Head hugs..tight one...squeezeeeee..
Love,
Oluwa
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Saysusie · Posted: Thu Jul 17, 2008 8:13 am Post subject:

Hi Mela;
"Verbal Vomit" is absolutely allowed here! We even allow "Verbal Hurling!"
Laughing

You need never apologize for the length of your post or for the fact that you need to vent! We, all of us, truly understand what it feels like to have one of those days when the pain is relentless and the tears are overflowing due to frustration, fatigue, and a sense of helplessness.
I agree with Oluwa, if you job is not aware of your illness, it might be time to educate them. Perhaps there are some job accommodations that they are willing to offer you. I also agree with Oluwa that it may be time for you to take a day to care for yourself. If you continue to push yourself, it will only enhance the symptoms that are giving you problems.
I know how frustrating it can be to have to try several medications, only to find that they do not provide relief from your symptoms. Believe me, you are not alone there. I think that most of us have been through that trial and error phase with our medications! I can only encourage you to continue to try combinations, because there has got to be a combination that will give you the relief that you need. It sounds as if your doctor is willing to work with you in that area. In that respect, you are fortunate.
Whatever you decide to do and however you decide to take care of you, we are here to support you, to help you, and to give you understanding and information when you need it. You are not alone!

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

mela · Tadpole Joined: 04 Jul 2008 Posts: 18

Thank you Oluwa and Saysusie,

While reading your replies i started once more to cry, however it was because you guys made me momentarily forget the pain and feel a huge wave of support, so it was a happy cry.

My employer does know about my lupus, no jeopardy for the job but on the other hand no special treatment either. If my boss sees me limping or looking particularly tired he will ask how I am doing but that is about it, not much sympathy, more like avoiding the subject.

Oluwa, thank you for not telling me to suck it up, you are right, I probably just need a sick day. Saysusie, yes, helplessness and frustration are my two primary feelings.

I will ask about taking tomorrow off, in the meantime i cannot thank you enough, in all my years with lupus this is the first time that someone with my illness has provided me with support. My friends are supportive but I do have to say that the advice and support from you guys is irreplaceable.

LOVE YOU!
Mela

rob · Pit Bull Joined: 12 Feb 2008 Posts: 369 Location: Maine

Hi Mela,

I'm sorry you are having some bad days. However, your term "Verbal Vomit" gave me a much needed laugh. I've never heard it put that way. You need not worry about long posts, and you don't need to be concerned about coming across as a "whiner" here either, because we know you are not. I understand the frustration, the tears. Sore joints, feelings of defeat, and what I call "lead blanket fatigue" can temporarily break down the strongest of people. But it's only temporary. And there is no shame in crying. I've done plenty of it myself, and I come from a background where typical guys like me are not supposed to cry. I hope you have a better day tomorrow. For us, even a small improvement the next day can feel really good, even if we aren't 100 percent OK. Go easy on yourself, and know that we understand how you are feeling. Verbally vomit as much as you need to, we'll always listen.

Rob
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Just remind yourself everyday
that into each life, a little rain must fall
so let it rain- Lou Gramm

mela · Tadpole Joined: 04 Jul 2008 Posts: 18

Hi Rob,

I am glad I made you laugh. Thank you for the support Surprised

)

Oluwa · Posted: Thu Jul 17, 2008 12:56 pm Post subject:

Hi Mela..

Happy hugs...

I choke and get a tight throat when I know someone cares...I get the little hic, hic snivels...as I try to hold it together. I believe those tears send a rush of heal me good through our blood...You are loved.

I love everyone I meet, well, till they give me a reason to only like them.

We suck up too much pain for one person. Physical pain, then the emotional pain the physical pain, having an illness brings..and then the pain of trying to feel understood by people. Wow, a truck full....

Relax, make Friday, Saturday and Sunday about you..Me, Mine, I...Mela's Weekend....Turn everything off, unless it gives you comfort in mind, body and spirit...

Another head hug....
Love,
Oluwa
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sits_inthe_corner · Posted: Thu Jul 17, 2008 1:04 pm Post subject:

As you've already been told, this is a whining welcome zone mela.

I know how you feel with the joints and the swelling and nothing really working. Every day is different and you just keep trying to get the upper hand.

The medication that controls my pain also increases my swelling in my lower legs.

I've been so tired lately that it's all I can do to come in and read posts. But they give me comfort even if I dont post a comment.

My boss has finally hinted that I can take 3 days off next week. It will be my first time off since Christmas....I'm so tired.

Hugs hope you get some rest and relief
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Oh look ... a cookie

mela · Tadpole Joined: 04 Jul 2008 Posts: 18

Thanks you guys! Today is a better day, the pain is less than yesterday. It must be all the good vibes you guys are sending my way! Much love to all of you Smile

Oluwa · Posted: Sat Jul 19, 2008 11:54 am Post subject:

Mela..

Resting I hope...getting me time in?

Thinking of you...

Hugs,
Oluwa
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