The Emotional Side of Things

Support
1

good morning friends~

i just wanted to say i appreciate this site and it's members a great deal since beginning treatment for this heinous illness. i have learned a great deal from books and your posts and the support is great. i wanted to inquire about something that hasn't been mentioned in recent posts regarding Lupus and thats the emotional side:

do you find that your emotions are everywhere? do you find yourself more easily upset? has depression or anxiety been an issue with you? do you just get so emotionally rattled by life that you can't do anything it seems?do you feel bad for feeling bad?

it seems in my short journey thus far that my emotions are just everywhere. i cry more. i'm ill more. i lack focus more. i'm anxious almost all the time these days and i get upset at the thought that i'm having more bad days than good lately. i pray and read my Bible. i don't talk to many face to face as i don't see them really understanding it. i talk to you all and my friends on one other support board. i just wonder if all of this is normal too????

i've been reading books and watching the discussion boards and trying to learn all i can. i just feel overwhelmed by this mess sometimes. please share w/me what your experiences have been like. i know no 2 will be exactly the same, but i just need to know if it's normal or if this thing has drove me nuts....

i've tried relaxation techniques, resting more, journaling, cognitive behavior techniques and other things...on occasion they work, but oftentimes they don't. it's like i can't even focus to do these things. i see the rheumy on the 26th (earliest i can get it). thank you in advanced for any feedback or ideas you leave :)

God Bless,

vicky

2

yes. yes yes. i have been depressed and confused more than before. but for me a lot of that was the stages of grief. i grieved over the life i thought i was making for myself. and i think i went through all the stages…more than once. just remember this : you are not crazy; if you were you wouldn’t have the sense to question sanity. and all of your feelings are valid and all deserve a chance to be aired out and tended to. and you are not in this alone.
ok?
uh oh,thunder storm have to shut down computer. ttyl
hug

3

I was told during my diagnosis, "if you want to have kids please let me know, we can discuss it, but my answer will probably be not medically advised" I cried in the car and on the way home, I am 34 years old with an older daughter, I just looked at her and kissed her and was grateful for having her when I did. But, I am still morning the missed opportunity to have a family in my "later" years.

Is this a common problem with young women and Lupus?

4

I believe it is. It’s not entirely impossible to have children, but according to what I’ve been told and have read- it’s not recommended. I believe we naturally grieve when we are told something like this is said to us. I think a lot has to do with how severe a case of Lupus we have. I’m still working through some grief myself. It’s not an easy journey I know, but know that you aren’t alone in it. I pray you find all the comfort and support you need.

5

Well, for me, as I have said in previouos posts, I find that I am grieving the “old me”, like I would someone whom has passed? It is confusing, I feel sad, angry, confused, scared, basically all of the “grieving” emotions that are considered normal? So, to me I think what we are all trying to do in order to cope is considered “OUR” normal…Like you said Vicki, no 2 will be the same, we are all so similar, yet so very different, we all have the same unfortunate life altering illness, but it affects us all differently…The way that the doctors discuss things with us is sometimes a little too harsh…We feel dazed, stunned, baffled…All feelings that when you walk out of a person whom is supposed to be helping you’s office, you really should not be feeling like that! I find it is as hard for even the medical professionals to understand let alone us poor souls that are facing it everyday! It is mysterious! All I think, and for me it does help, is “What is meant to be, will be, no more, no less” even in regards to what our fate is with having children, getting married, getting a job, etc. etc…It is a fate that is mapped out, it is right there befor our eyes, we might feel like we are tripping and stumbling on our way down the “path of life” but we will all be OK! We need to focus, even though that is hard to do too, on what we are able to do, and “adapt” to our new lives…Reading about Lupus, joining a support group full of people with all different kinds of knowledge, not wanting to face some of those in our lives, well, if that is the way we need to get thru all of this, then it is NORMAL, never feel like you aren’t! We are warriors, we really are, things could be a lot worse, and I know I sound like a broken record when I say that, but it is so the truth! We are here, we have one another & we are alive and breathing, for me, as I am sure for you all too, it is the same, I am “VERY THANKFUL” for that, I am Grateful for what I do have in my life, including you all… {{HUGS}} to all of u! And Thank U for listening to me…Suzie :0)

6

I agree with Suzie in that we are all warriors and with compassion as our weapon and shield, who can harm us?



Suzie D. said:

Well, for me, as I have said in previouos posts, I find that I am grieving the "old me", like I would someone whom has passed? It is confusing, I feel sad, angry, confused, scared, basically all of the "grieving" emotions that are considered normal? So, to me I think what we are all trying to do in order to cope is considered "OUR" normal....Like you said Vicki, no 2 will be the same, we are all so similar, yet so very different, we all have the same unfortunate life altering illness, but it affects us all differently....The way that the doctors discuss things with us is sometimes a little too harsh....We feel dazed, stunned, baffled....All feelings that when you walk out of a person whom is supposed to be helping you's office, you really should not be feeling like that! I find it is as hard for even the medical professionals to understand let alone us poor souls that are facing it everyday! It is mysterious! All I think, and for me it does help, is "What is meant to be, will be, no more, no less" even in regards to what our fate is with having children, getting married, getting a job, etc. etc....It is a fate that is mapped out, it is right there befor our eyes, we might feel like we are tripping and stumbling on our way down the "path of life" but we will all be OK! We need to focus, even though that is hard to do too, on what we are able to do, and "adapt" to our new lives...Reading about Lupus, joining a support group full of people with all different kinds of knowledge, not wanting to face some of those in our lives, well, if that is the way we need to get thru all of this, then it is NORMAL, never feel like you aren't! We are warriors, we really are, things could be a lot worse, and I know I sound like a broken record when I say that, but it is so the truth! We are here, we have one another & we are alive and breathing, for me, as I am sure for you all too, it is the same, I am "VERY THANKFUL" for that, I am Grateful for what I do have in my life, including you all.... {{HUGS}} to all of u! And Thank U for listening to me....Suzie :0)
7

Agreed… I am learning more and feeling more informed with every post from all you warriors.

8

That’s what I was hoping to hear, I am happy about that and with every passng day may you all find more & more Strength to FIGHT like you’ve never fought before! We CAN NOT let all of this WIN, together we can DO IT! I have Faith & I hope y’all do too! Suzie :0)

9

There is great strength in numbers friends. It’s a scary journey we are on, but we don’t travel alone. We must do what we can to be at our strongest- even if it means just tackling things one hour or even minutes at a time. Many won’t understand it, but we do. We just need to remind ourselves of this. Our struggle may have been given to us to help someone else along the way. But we can help each other as well. We may stumble on this journey. We may fall a time or two. But we are in it together. We can find faith and courage in ourselves a number of ways. Here in each other. Through God. Education and Awareness, Support. You do what is necessary to be the “best you” you can be. It’s not being selfish- it’s being a survivor. That’s what we are…survivors.

10

I too mourn for my old self. I walked 5 miles a day, played a mean game of softball on two teams and thought I had the world by the tail. Then one morning I woke up and it took one half hour to get moving. It was like a bad dream. Anyway to make a long story short, I went on disability and found a good therapist was was knew about this horrible disease and helped me immensily. I “buries my old self” and learned to start over. I appreciated the days I could get out of bed and learned to live with the days I could’t. Luckily, I have a very supportive family and good drs. I already had 3 grown children when they finally came up with diagnosis and treatment. Hope to yours and keep on truckin as the saying goes. Take time to mourn the old you and then learn to love the new you. Good luck to you.

11

Feeling a bit unshore (play on md shoreline) tonight. I am constantly sweating as a result of one of the meds and I do not know how to stop the sweating. Any suggestions?

12

are you having other symptoms? chest pain? shot of breath?

13

No. Just sweating… It is strange, as I have not perspired like this for at least 2 years. I am sweating in my head and mostly at night, the sweating increases.

14

do you have a fever or chills? I went through something like this not too long ago. I was sweating and itching like crazy at night. and (this is weird) in the sun I smelled like cat pee! It was awful. They tested me for TB. They also gave me an antibiotic and after a few weeks the symptoms went away. Some of these meds do put us at risk for infections, so I would tell your doc.

15

No. Just sweating in my head and on my forehead. I have increased urine too. It almost feels like a diaretic response. I have lost some weight too!! I just went to the lab for lupus routine tests, checking on organs, I guess. So, I will know more then. Just wasn't sure if this symptom was normal from the medication. I googled the meds and found out this medication will cause sweating. I will talk to my doctor about the excess sweating at night, sometimes, I am hot in the middle of the day, too.

This is a journey.

16

Hey, just checking up on you to see how you are feeling tonight.
I had a better day than I expected.
I know what you mean about having tried all these fixes, some that work very well, but not being able to put my hands on what i need when I need it. I always felt like I needed a companion with a survival kit to help me get through, to remind me what to use when and to help me when I an too weak.
I always want to sweep all my woes into a pile and then fix then with just one simple thing…has not worked so far! lol.
But having this site with all these outta sight people has been a huge huge help. I know I have said it before,but I feel so different now that I am involved with all of you here because we go through so much in common and it makes me stronger when I go see the docs.
anyway, I am here and if I can do anything to help let me know. I am thinking about trying what some of the other sites have done and getting an open chat available to all of us==a maybe once a week or so…or maybe even like a drop=in chat where “two or more” might gather" in support of one another. IDK. what do you think about that?

17

I am fine, thankyou. I think a flare is coming, I have a rash on the inside of my elbow, other then that I started training for my new school year, I am a teacher. A bit scared, but I filed ADA with my school district just in case I need a replacement teacher until I am better.

Today, I had a doctor's appointment with an endocrinologist, made pre-lupus diagnosis, he cringed when I told him I had SLE lupus with Sjoren's, I felt like crap and felt like I had a death sentence. Then I started to feel a little less optimistic about LIVING with LUPUS for at least 30 years. Then I just reminded myself of all you wonderful people online diagnosed and living years with lupus. So now I am better.

What woes? Feel free to share with me. I support the chat group and love the name.

18

HI I just want to say i to sweat very bad i feel like i am running a fever.so you are not alone.now i have more .problems .I went to doctors today i told my doctor that i have been having stomach trouble and groin swelling now it has gone to my lower back now he thinks i have hernier but i have had one so i don"t think that is what it is.I have had swelling in my groin for awhile and i also have saver swelling there to does anyone have these problems please let me know.I wish we could get doctor OZ to do a show on lupus and have everyone on ower support group there.maybe we should write to him all at one who would follow me.let me know if it sounds good .love to all.dee

19

Greta Idea about Dr OZ!!! Let’s write him a letter!




dee said:

HI I just want to say i to sweat very bad i feel like i am running a fever.so you are not alone.now i have more .problems .I went to doctors today i told my doctor that i have been having stomach trouble and groin swelling now it has gone to my lower back now he thinks i have hernier but i have had one so i don"t think that is what it is.I have had swelling in my groin for awhile and i also have saver swelling there to does anyone have these problems please let me know.I wish we could get doctor OZ to do a show on lupus and have everyone on ower support group there.maybe we should write to him all at one who would follow me.let me know if it sounds good .love to all.dee