View Full Version : Where to start...

04-09-2010, 11:26 AM
Hi all,

I have missed you guys!! I have not been on for about a month and a half because I have not been in the best of places and I did not want to bring that energy near any of you. I did, though, find myself thinking of you guys often.

I have been having some major joint pain in my feet, especially my heels. Although I feel I can tolerate a decent amount of pain, one of the hidden benefits of having lupus, :hissyfit: this time I have not done so well.

Physically the pain hurts bad and it is constant but the emotional component is where I feel completely drained. I hate when I let this disease get the best of me; I have a short fuse, I am intolerant of everyday things, I cry for no reason, I can't concentrate. AHHH!! It makes me so mad!! I did finally make it in to my rheumy, she made an adjustment to my meds and I feel like it just might start to get better.

I am sorry I have not been on...Leslie and Amanda, thank you for the messages you left me, they made me smile.

I am going to do my best to try to get through this rough patch without falling off the face of the...WHL.

I love you guys...Samo

04-09-2010, 02:49 PM

04-09-2010, 11:58 PM
Samo (((((HUGS UPON HUGS)))) You've been on my mind. Glad to hear from you.

Please don't ever feel like not coming around when you're upset and down... that it will be harmful, okay? We all need support. Friends are there when we're up or down, angry or happy, etc... We share it all sweetie! I've got a dry shoulder for you anytime. Any of my WHL family.

I doubt you're crying for no reason...you've got good reason to cry. This disease sucks.

I've been going through that storm myself. I hate when it gets to me too, but it happens. I've had a few setbacks in life that are disappointing. And that stupid kidney stone put me into what feels like a super flare. I've never felt so bad in my life. This one is a whopper.

I think it's important to keep our chins up...to make sure we're laughing and enjoying as much as we can in life...but sometimes we just need to have a good cry. It's okay. So long as you get back up on that horse again. It's healing to have a good cry. I've cried myself several headaches in the past week and drove my husband absolutely nuts, bless his heart. But I've dusted my fanny off and got my second wind (which felt really good). Right now, I'm about ready to stick my foot back into that stirrup, throw a leg over, and try to sit tall in the saddle again. This is a tough horse to ride! Until science can tame it for us completely, we never know really when we're going to get bucked off and thrown to the ground. Or bit by it! Sometimes we can laugh it off, sometimes we cry, but it's all fine so long as we get back to the trail and keep on keepin' on. It may get to us sometimes, but it can't have us. We're stronger than it is!

This will pass sweet friend. Hang in there. Praying for you.


04-10-2010, 12:29 AM

There's a nice visual I meant to add to my "autoimmune visual".


04-10-2010, 06:20 PM
Ahh Leslie...

Your words first made me cry, in a happy way, to know that you and the WHL family are here for me. I agree with you that friends are there when we are up, down, angry or happy...it is just that I can be a bit stubborn and I was mad at myself for letting this flare get to me. I am a strong believer that a good cry can help you get back on that horse when you have fallen off. Thank you for the analogy, it is a good one.

I am sorry about your whopper of a flare with that kidney stone...it is good to know you are "getting ready to put your foot in the stirrup"!!

Secondly your words/picture accompanying your "autoimmune visual" made me crack up so bad....I loved it!! Thank you for making me laugh!

It is nice to hear from you...till next time! Samo

Angel Oliver
04-10-2010, 06:57 PM
Oh im so glad you are back we all miss you....and yes i too laughed at the legs in the stirrup lmao :)

I so understand you my friend and always know we are here for you no matter what.Im so glad you seem to have a good doctor who can adjust the meds correctly and i hope day by day you begin to ease.I know its not easy, im in the deep dark pit to the left :) Sending you gentle hugs and lots of love.xxxxxxxxx

04-11-2010, 01:26 PM
Welcome back. We missed you, and we really don't mind some venting. We all need to do it sometimes and it helps to share with others who understand.
Keep coming back to update us.

04-13-2010, 01:58 PM
Hi samo,

so glad to hear from you, but so sorry to hear about your physical and emotional health. As you know, everyone here understands how the physical attacks of the disease can cause an ambush on our emotions. Please, don't ever let that keep you away from whl....our purpose is to learn from each other, and to support each other.

I hope you are feeling better today.

Leslie did an excellent job of painting the picture of living with an AI disease for us, and if we missed her meaning, then the "emoticon" put it into perspective....ha ha ha
we need to make that our official whl mascot.

04-13-2010, 06:54 PM
Amanda, yes, you are right about that, it will be a day by day job to get out of the hole this time. I know it will happen though, especially since you are sending me hugs from the "deep, dark pit"!
Marla, I agree that it certainly helps to share/vent with those that understand, thank you for your words.
Phyllis, ambush is sure the right word. Like Marla and you said, everyone here understands, I have to remember that. I am feeling better and that gives me hope.

I have to say that it was scary how easy it was to just shut down and turn inward, HOWEVER, the minute I visited whl again, I felt relief, that was good!!

And finally, yes, Leslie did awesome painting a picture of living with AI, I am still laughing!!

I love you all!

04-13-2010, 09:05 PM
Hi Samo;
I am so sorry that I am late in welcoming you back! I cannot say anything more eloquent than has already been said. You have been missed and I am so glad to see you back, but so sorry to hear that you have been having such a rough time.
You need never apologize to us because you know that we all understand! Especially the emotional highs and lows that this disease takes us on. It is hard to maintain an even and cheery attitude when you are in constant pain. So, your emotions are quite normal and, I have to say, the fact that you recognize the ups and downs means that you are ahead of the game. Many of us do not even know that we are going through these emotions.
You can cry here with us, scream here with us, rage here with us, and rant here with us. We all do it and we all understand. I hope that the new medications will give you some relief. In the meantime, know that you are always welcome here regardless of your emotionals state or your health. :yes:

Peace and Blessings

04-14-2010, 01:18 AM
I'm so glad you're feeling better Samo. ((((more hugs))))

We're here for you, for whatever you need sweetie.

Keep in touch, okay?

Ya'll crack me up...lol...I wasn't thinking of the gynecological kind of stirrups at all. :laugh:

04-16-2010, 07:06 AM
hi samo,,,,just checking on you.

04-16-2010, 06:50 PM
Hi Saysusie! Thank you for "welcoming me back". It is comforting to know that such a wonderful group of people care. I agree with you that recognizing emotions gets you ahead of the game; what I have a hard time with is that you are going along, dealing with the everyday pain and then BAM! You get a flare that knocks you on your bum. It is a feeling unlike any other. No worries though, next flare I will come to cry, scream and vent...get ready :wacko:

Leslie and Phyllis, Oh my! I was thinking stirrups on a horse, he, he! That was funny! On another note, I still have pain, as the meds have not fully kicked in yet. Just tyring to deal with it as best as I can...

Much love to all of you!

04-17-2010, 11:06 AM
Yes, please come here to us whenever you need to release whatever emotions you are dealing with. Because we all have been there when a flare-up just brings us to our knees and stops us in our tracks! It is frustrating, demoralizing, and sometimes can make us feel hopeless. We know!! So, come to us so that we can assure you that you are valuable, you are understood, and we really do care.

Peace and Blessings

04-25-2010, 05:24 PM
Thank you Saysusie and all of you as well. I am having a particularly painful weekend, lots of pain in my left foot and my right knee. Feeling mighty angry and then worn out from being angry. Here you go ladies....the venting has started :grumpy:
Hope you all are having a good weekend.

04-26-2010, 09:49 AM
hi samo,

it always amazes me how one ankle, and one knee can hurt so bad....seems that our antibodies have a mind of their own, and chomp on our bodies as they please. It is impossible to not let this get us down. My right shoulder has been hurting for a very long time now....it really gets me down. I try to pick up my little dog, and cringe in pain....then I go through being grumpy because i just get so tired of hurting. I wish there were words of wisdom that can help us deal with vicious cycle that we go through, but i guess we just have to find our way through all of the pain and its effect on our emotions.

thank goodness we have each other....venting can be the best release.

05-05-2010, 07:11 PM
So, I believe that in our lives, some (or most) events/encounters are "meant to be". I'll explalin. As you will notice, my last post was on 4/25/10. On 4/27 I came home from work and decided to do a bit of exercise at home because I was tired of using my pain as an excuse for not doing any exercise. Well, that was a BAD IDEA as the next day my right shoulder was completely inflammed. Right now, my shoulder hurts so bad that I cannot lift my arm and it is painful to take a deep breath. So, my dear Phyllis, when I read your post about your right shoulder pain I couldn't help but cry. I completely agree with you that our antibodies pick a spot and setup camp. Also, how one spot can hurt so bad for so long?!?! It is this pain that brings me down like a bag of rocks. Words of wisdom...yes, I wish there were some. You are right that we have to find our own way through all this but I am so glad we have each other to help us through.

Much love and even more relief to you...Samo