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AyahsClan
10-23-2008, 02:16 PM
Hello,

I am looking for folks who understand what this life is like. I am just too weary to wake up anymore. It never gets better, but if you have lupus too, you know. My arms feel too heavy to type, I am in pain and my stomache is upset.

Info; 48, 3 children 5 grandchildren, hashimots thyroiditus, lupus sle, hereditary hemochromatosis. Married a man four years ago who has Aspergers Syndrome and we didn't know it. I live in Southern California in a little cabin on 5 acres and take care of my mother. I am an animal person, horse woman who has lost everything. No horse, just a dusty saddle and empty corral. I have no support from anyone, or anywhere. My doctors are idiots.

Sorry, you all have your own burdens to bear and I have nothing to offer but my own pitiful misery. Why doesn't anyone in my world understand what this is like? If I am too much of a buzz kill I understand and will not stick around.

Ayah

Pearl
10-23-2008, 02:41 PM
Hello - -

Please do not think of yourself as a buzz kill. Each and every one of us here understands what it is like to deal with the challenges of lupus on a daily basis...from the physical feelings to the emotional ones. This is a true place of warmth and support.

Know that you are not alone. I too am a former horsewoman who no longer rides...my dusty saddle also holds fond memories. You will find new ways to enjoy the animals and to bear the difficulties you face each day. Hopefully, your visits here will provide you with the strength and courage you need to face each day with your head held as high as your tired body can hold it. For me, that is sometimes flat on my back with a pillow behind it.

:lol:

Know that you are welcome.

I wish you wellness,



Jana

rob
10-23-2008, 05:19 PM
Hi Ayah,

I'm Rob. I'm 40 and I was diagnosed with SLE in 04'. Your words read like a mirror image of my own. I have fatigue that's like a lead blanket thrown over me. I understand your loss of the things you love. I've also lost far too much. And Doctors, well I could not agree with you more. Good ones seem impossible to find. I went for a long time with absolutely no support from anyone too. And I thought it would never get better.

I have Lupus, I have never ending flares, and some days I can't get out of bed. But, I'm getting things under control, and have discovered new friends and family members who do try to understand and be supportive. It's not perfect, but things are slowly getting better. I want you to know that things can get better for you too. I know everything seems hopeless right now, but that's only temporary. It doesn't have to stay that way.

I know you feel miserable, but you are NOT pitiful. And I'd be willing to bet that you have plenty to offer, you just can't offer it today. I have nothing I can offer on my worst days either. But on my good days, I have alot to offer, as do you, and so many others here do as well. Somedays, a person can be a solid shoulder for others to lean on. Other days, that same person can be the one who needs that shoulder, and the support. Right now, it sounds like you need a shoulder to lean on.

I want you to know that you are absolutely welcome here, and I really hope you will stick around. Please make yourself at home, and don't be afraid to talk about what you are going through. We will listen. I'm glad you are here.

Rob

sits_inthe_corner
10-23-2008, 05:24 PM
Welcome AyahsClan

Glad you found us. It's upsetting to always have to base your schedule on "how you are feeling at the time".

We all do it. For the most part it's no big deal. But it does get old and frustrating some times. Kinda sucks all the spontaniousness out of life.

But you do learn to enjoy the good days when they come our way.

This board is here to offer support, information and kindness...we all have our days when we need more than we give, and let me tell ya ... this is a very giving board.

So welcome and feel free to vent, spew or just whine your face off. We all do.

We will read your posts and we will offer a shoulder.

Glad you found us :)

coltsfan
10-23-2008, 06:43 PM
Welcome AyahsClan,
If I could, I would give you a huge hug right now and let you know that are not alone. I have met some truly wonderful people here and I know that you will too.
Welcome friend and I hope to talk to you more soon.
Robyn

KathyW1958
10-24-2008, 05:13 AM
Hi Ayah,
Welcome to the forum. My name is Kathy and I will be 50 in December. I have two children that are now adults and on their own now. I have a beautiful grandson. I understand what it is like to lose everything. Lupus is a horrible illness big time. Please don't say that you are s buzz kill, because you aren't. It is sad that a lot of people can not understand this illness. It is sad, because most of the time we look perfectly healthy when we aren't and people just can not relate to us. There are not very many people that I can talk with about this illness, because they just don't get it. It took my husband several years before he realized this is a severe illness and now he is more understanding. I love comming here and reading the posts. I hope that you will keep posting as we do all care very much about you and what is happening with you.

Hugs,
Kathy

AyahsClan
10-24-2008, 02:12 PM
Thank you all for the warm understanding welcome. You're right, I'm not always this bad and when this flare subsides a bit I will have something to offer. Until then I am going to read some and get to know you all.

Thanks Again,

Ayah

rob
10-24-2008, 02:35 PM
Hi Ayah,

I'm glad you decided to stick around! I'll tell you what, you and I are in the same boat today. I'm in the middle of a flare from hell right now. No sleep, pretty much everything hurts. Grrrrrr. To add insult to injury, it was almost 70 and sunny here today. Won't see many more days like that until next year. But, my spirits are good, even if my body is not. Anyway, we're really informal here, and pretty laid back. Make yourself at home and feel free to jump into the conversation whenever you like.

Rob

Saysusie
10-25-2008, 08:40 PM
Hi Ayah;
You've been given some wonderful support from our members here. I can only ditto what has been said and reiterate that you are not a buzz kill in any way, shape, or form. We all understand what you are experiencing.
I just wanted to add my "welcome" to those you've already received and to let you know that I am glad that you are here with us!

Peace and Blessings
Saysusie

Kcflannery
11-05-2008, 07:04 PM
hey ayah :)
first of all welcome!! you are nowhere near a buzz kill....in fact i truly think that the main reason we all visit this forum is to know that there are hundreds to thousands of people who understand how devestating at times this disease can be (*raises hand*...i can)
I know when I was first diagnosed over this summer I asked the questions "why me?" "why now?" "ive always been so active and healthy how could this have happened?" "what have i done to deserve this?" The huge question in my mind was "will I go off to college in the fall?"
but slowly<--keyword...things started getting better...and I began to realize that with a little faith and a good repertoire of friends that what seemed to be the unachievable could be achieved

keep your head up and know that if you need anything even someone to vent to...I'll be there
Kat

Oluwa
11-05-2008, 07:19 PM
Hi ya Ayah...

Misery loves company, come join us and we can work together to find a bright side, a buzz. There always is even through a flare...

Do read about...you may find something, someone who can help you with your feelings of misery. I've been in the bottom of the barrel, in the stupid hole...lost in a cave without a light, feeling mentally and physically broken and these wonderful people, friends, family have helped me to find my way out...

Latch on, read on..we can help you through...

Keep looking for your wellness...
Hugs,
Oluwa

DrinkofWtr
12-03-2008, 09:12 AM
Please stick around and let us hear from you. We are here to support and encourage one another and you can vent here too.

SandraC1983
12-03-2008, 09:35 AM
Hi Ayah Nice to meet you .. Welcome to the site. I hope you have a wonderful day. As for me im planning on staying in bed. But im glad you found this site. Im glad i did. I may whine alot but there is always someone here to listening to me .


Godbless

Sandra

purple_butterfly
12-05-2008, 06:15 PM
Hi Ayah;
It is nice to meet you. Please stick around. You need us as much as we need you.
My name is Kim. I am the mother of 3 and was diagnosed with Lupus 5 years ago. There are days where I feel like going off all my meds and letting nature take its course. There are days I am so tired of feeling lousy and being in pain that I wish I would just die. Most of the time I feel so alone and that no one understands how I feel. But then I found this site and realized that I am not alone.
Feel free to unload. You are not a buzz-kill. You have a horrible disease that few people understand and fewer could deal with. We do and we are here for you.
I am sending you an e-hug and know that you are not alone.
Kim

Danica01
12-06-2008, 06:05 PM
Hi Ayah!

Stick around!!!!!! Everyone here is wonderful and loving and offer so much support! I can relate to some of your issues right now. I have not been able to keep food down in almost a month and because I have not been getting enough nutrition from food I seem to live in a constant state of dealing with cold symptoms! But, I know it will get better eventually. It may take a long time or if I am lucky a short time, but it will get better. Let us be your support group and let us listen to what you are going through. You are not alone and please know that everyone here cares and wants to be there for you! Keep coming back and we will prove it! I am sending you a big hug and I hope you rest easy tonight.

Love
Danica


:wink: :wink: :wink: :)

Oluwa
12-11-2008, 06:45 AM
Hi Ayah...

Wondering how you are and if your flare has left the building? I hope.

Hugs..
Ouluwa

Angel Oliver
02-21-2009, 07:28 PM
Oh im sorry i seemed to have not posted here. I too hope you are well and coping ok.

love
Angel.xxx

AyahsClan
02-21-2009, 07:29 PM
I think I am just regaining lucidity from the Christmas chaos, what month is this lol...

Hope you all had a wonderful holiday. All I can remember is snow, cold, snow, fun, snow, pain, snow, children,...what a winter!

Love to you all,

Ayah

(Now to get to know you all)

cherokee993
02-21-2009, 11:55 PM
I agree with the above, we all have days where we just need to vent it off our shoulders and seek the warmth of friendship, here we are not alone. Stick around and get to know everyone, they have been such great comfort and joy!

mountaindreamer
02-22-2009, 09:55 AM
hi ayahsclan,

just want to say hi and welcome back. Hope you are having a good day. I have found so much support from this group. It has really helped me face the world of lupus.

lmangusrn
02-24-2009, 08:57 AM
I am sorry you are so frustrated and down. I know that all you described I have and do feel sometimes daily. We all have!
I was dx'd only 6 months ago although figured I had lupus for many years. I really am not the type to go to the doctor for every little thing. In fact I probably wait to long before going and then things are more out of control. I am a nurse and nurse's are the worse for taking care of themselves(because we are suppose to take care of everyone else)
I was lucky in a way. I was getting my yearly physical and as I was telling my new doctor (we had just recently moved to another town) about some of my symptoms I was only really answering what was asked. I had been under a lot of stress and felt a lot of what I was felling was due to the stress. My doctor took routine blood tests and felt something was not right, sent me to a rheumy and then it was all down hill from there.
I now take 36 pills a day-before I was taking 4 for previous problems. I AM NOT A PILL PERSON and that had been the hardest for me to get adjusted to.
I was of course very depressed, overwhelmed, frustrated and just ready to throw in the towel.
I have done lots research and reading on the disease.
My mother had lupus but never had to be on lots of meds and never had flares or complications or a lot of anything but aches and pains. I really thought that's what was going to be for me when I was diagnosed. That was not the case. I have overlapping lupus and have had several flares already and we are just trying to get it under control.
It sucks, I am still upset and frustrated most days.
I have found some things helpful. This support group helps me to feel like I am not the only one out there. It helps me see that the symptoms and feelings I have are the same as many. I can talk about those things here and not have to worry my family or firends. Maybe I feel this is a safe place.
I also started a journal. I don't write much but I write something every night. Usually about my symptoms for that day, what maybe happened, if I am frustrated, etc. When I shut the book it's over and I try to let go and know that they next day is a new one.
It's doesn't always work but it has helped me.
Find the things you maybe enjoyed and find another way to enjoy them. Find new hobbies and interests. Explore a little. I have started writing letters to firends and family and found that I can do it sitting down in bed at night and like that I am keeping in touch.
This is the exact place you want to be and you will have support from everyone here.

AyahsClan
02-24-2009, 02:29 PM
Imangusrn, thank you so much. It hurts to know how much you and the others are going through, but do I ever identify with it. That dread you felt when you had to face lupus as a professional nurse, and dealing with all the meds must be so deeply frustrating. I remember getting the first phone call 25 years ago from the doctor with my first autoimmune abnormals. I cried and lived in denial for as long as I could. I kept hoping it would go away, get better, I tried some silly alternative medicine to get better. {{{hugs2u}}}

This week has been great so far because of you all. This week I created my new motto and focus of everyday:

BELIEVE IN TOMORROW - APPRECIATE TODAY

Mountain Dreamer, Cherokee, Everyone, I came here weary to the bone and feeling so alone. Thank you for being here, I'm not feeling so alone anymore and the arcade is fun!

lmangusrn
02-26-2009, 07:51 PM
Hey just wanted to say hi tonight and make sure you have a smile on your face. If you don't then know someone is thinking about you.

Angel Oliver
03-06-2009, 01:55 PM
Just checking up on ya :) Hope you are doing well today and trying to rest up and know there are all us here thinking of you and sending you hugs over the airwaves :)

love
Angel.xxx
(sat eating chocolate)xx

Saysusie
03-09-2009, 10:40 AM
Hey Angel;
How did you figure out how to get smileys in you posts?

Thanx
Saysusie

Angel Oliver
03-09-2009, 10:46 AM
Im laughing because thats the problem i can not see what Conrad can . I just did this

press :
then )
and you get :)

So for now im cheating. Conrad said i should be able to see emoticons on the left with a 'more' button, but a few of us here can not see that.....dont know why.Im sure when he has time he'll show us....slowly lol :)

Hope you are well.xxxx

BonusMom
03-09-2009, 11:10 AM
[QUOTE=
So for now im cheating. Conrad said i should be able to see emoticons on the left with a 'more' button, but a few of us here can not see that.....dont know why.Im sure when he has time he'll show us....slowly lol :)

[/QUOTE]

You're not alone on this Angel.....there's no "more" anything showing on my end either :(

Love the avatar pix of you!

Angel Oliver
03-09-2009, 01:32 PM
Oh thanks for being kind.When im brave enough i may get my surf board out n put me swim costume on. :)

AyahsClan
03-09-2009, 04:28 PM
Hey girls! I don't think it is us, there must be a glitch. I don't have the smily's on my right either.

I can do this these with a semi colon and parenthesis: ;) :) :(

Saysusie
03-10-2009, 04:52 AM
Oh OK...I was starting to feel like there was something wrong with me or that, once again, I was in LOOPYLAND and not able to figure out the simplest thing like seeing the smileys on the left side of my screen :-\

Peace and Blessings
Saysusie

Saysusie
03-10-2009, 06:09 AM
Well, I finally figured it all out. If anyone is still having problems finding the smileys and/or options for text, see my post under Conrad's orginal thread about the new smileys in Lauri's Lounge.

Good Luck
Saysusie

Angel Oliver
03-10-2009, 06:21 AM
Thank you so much ive found them;).xx

Saysusie
03-12-2009, 10:35 AM
Oh Yes, small things can make us so happy. Big Group hug :grouphug: for all of us helping each other figure it out!

Peace and Blessings
Namaste
Saysusie