Breaking Point

I have truly reached my breaking point with Lupus. Enough is Enough, yet again I have

a rash, im in pain again, I am very negative at the moment......I do run a Prayer Group and

have continued Faith in the Lord, but I do not have Faith in Lupus at all.... Everytime

I have something planned this beautiful face rash appears, or Im kept up at night

with major pain. Im usually a positive person but this is really pushing me to the limit.

I know im not alone, however all of us are spread out from each other, and even in my

own Social Worker Group, the good friends I have there are still an hour away.

None of my family or immediate friends have this. I am coming up with a Plan to

stay positive but for right now im sorry im venting , I know this will never go away,

its always good to have a PLAN in Place which I do, Im going to rest and see if this

flare will leave on its own, then hopefully I can move forward......HUGS Rachel

It’s okay to vent!!! Even though we are far away in different parts of the world we are still close in thoughts!!! Hang in there and relaxe it will be alright … Keep you spirit up and your Faith strong .!!!god bless you …Beverly L.

I am sorry to hear you are having such a rough time right now. I certainly can empathize with how you are feeling and hope your flare passes soon. Why is it Lupus always manages to rear its ugly head when something fun or important is planned? When I find myself dealing with a similar episode I try to remember "this too shall pass" Then one morning....as sudden as the strom appeared...I wake up and the storm has passed. I'm sure you are doing all the necessary things that can help you cope with your symptoms, however, be gentle with yourself. You are not alone, you have a strong support network albeit there is some distance. I'll be keeping you in my prayers!

Poor Rachael, I am sorry that you are feeling so bad and the lupus has put at your breaking point, but I am glad that you are spiritually strong and not let the devil destroy your faith. I will be praying for you. and all of us in the LWL family. Many blessing and hugs.xoxoxo

Hi my dear friend Rachel Simpkins, i am so sorry you are feeling this way. I think we all get to that point at some time or other in our time with Lupus. I was really really fed up yesterday as it looks as though the MRSA has returned and its getting an appointment to see a doctor can be really hard for me, as they are so overloaded with patients its really hard to make an appointment, that in the end i will have to get whats known as an emergency appointment which i hate doing, but even the receptionists know that we have to resort to that sometimes as they have no appointments left to offer. Anyway going back to you my precious. I can really understand why you would be feeling as you do at the moment, it is really soul destroying sometimes isnt it, one minute we take a step forward so we think, then we end up taking two steps back, and the rug has been pulled from under our feet so to speak. The face rash, well i could sceam with mine sometimes, i take this cooling spray with me everywhere i go which i find helps sometimes. I am so sorry you are in so much pain, its so hard for you to deal with. Have you any pain meds at all? I know you are a really positive person, but even the best positive person can be pushed over at times. The thing is you will get back up, even if it doesnt feel like it at the moment. I am thinking of you, and i am here for you. We all need to vent at times, it does us good to talk with others who understand what we are talking about. You are doing everything you can, sweetie. So as you said yourself, you just need to rest, take it easy, and be kind to yourself. Try and think of things that will help you, i know its hard when you are in the thick of it. I sometimes think of the things i am going to be doing when i feel abit better. When the pain gets to the stage where you cant think properly though, then i know that wont work. I think i have said before to you about pain, i have felt like thumping the bed at times, as nothing takes it away. Have you got a heat pad or a tens machine or anything like that to help abit. If you need to sleep, try having a nice warm horlicks or cocoa, or something you know might help you to feel better, i get a hot water bottle sometimes depending on the weather of course. I really feel powerless, i wish i could just wave a magic wand and take it all away for you. I will keep you in my prayers as always, take care my friend, look after yourself, thinking of you, love and hugs Astridxoxox, remember i am here for youxoxox

Rachel, I know if you're at a breaking point, things much be really bad because you more than anyone I know manage to find the one little candle burning in even the darkest nights. I will therefore spare you my usual "chin up" talk and simply offer a prayer for the sick:

Father of goodness and love,

hear our prayers for the sick members of our community

and for all who are in need today.

Amid mental and physical suffering may

they find consolation in your healing presence.

Show your mercy as you close wounds, cure illness,

make broken bodies whole and free downcast spirits.

May these special people find lasting health and deliverance,

and so join us in thanking you for all your gifts.

Amen.

Hugs & peace, pj

Oh pjarden, that is such a beautiful prayer. I love you for feeling our pain and sending up that prayer for all of us. Be blessed. Rachael, God is already working your healing and I truly believe that. Thanks for being apart of our family, the both of you. Many blessings and hugs.xoxoxox



pjarden said:

Rachel, I know if you're at a breaking point, things much be really bad because you more than anyone I know manage to find the one little candle burning in even the darkest nights. I will therefore spare you my usual "chin up" talk and simply offer a prayer for the sick:

Father of goodness and love,

hear our prayers for the sick members of our community

and for all who are in need today.

Amid mental and physical suffering may

they find consolation in your healing presence.

Show your mercy as you close wounds, cure illness,

make broken bodies whole and free downcast spirits.

May these special people find lasting health and deliverance,

and so join us in thanking you for all your gifts.

Amen.

Hugs & peace, pj

I wish you well, I think everyone here has been where you are. I know I have been and yesterday was one of those days for me as well. We can't control Lupus or what it does to our bodies, but we have to remember that the Good Lord is with us every step we take. You have been through so much lately and I truly hope and pray that you get better soon. You are in my thoughts and prayers. Please keep us updated on your condition and remember we are here for you no matter if it is to vent or to share feelings. Keep smiling :) I wish I still lived in Michigan, I would join you in your walk. Not sure I could do the 2 miles, have a hard time walking through my house without losing my breath.

HUGS,


hope you are feeling better my friend

Aww, what a lovely cute picture, which says it all. Where do you find them all Janice, they are gorgeous, i am sure Rachel will love thisxoxo

Hi Rachel Simpkins, i am pleased you are starting to feel abit better. When ever i get to the end of my tether with things, i try and think what i can do. I sometimes hit the steroids, they are such a useful tool. I am on high dose steroids most of the time, my doctor says he knows he can rely on me to use my common sense as to when i need to up them for a little while, like when my ankles swell right up, and nothing i can do like elevation will help, so i take extra steroids then, then lower them again when things get abit better. The last thing i need is steroids on top of steroids, hehe. Well done for having done the Lupus walks before, i hope this years one goes well for you as well, you have a little time to prepare for it before it actually comes around. I hope you will be well enough to do the walk. We dont have anything in our area, all the walks are miles and miles away, but i have raised money in other ways, i did a sponsered slim once, and made some cards from the photos i take, and all the money raised when to Lupus Uk. So keep up the good work, keep strong. Thinking of you, take care, love and hugs Astrid40xoxo

Rachel Simpkins said:

I took my left over steroids, im getting better, I cant thank everyone enough for caring and their beautiful Prayers,

Im glad your there for me, as I got completely upset with this latest, your caring thoughts and Prayers is keeping

the negative, I am a Prayer Warrior, even though I dont care for this disease.. My Lupus walk is June 3rd early

@ the Detroit Zoo, I made the 2 miles last year and Im Praying I make them this year.....HUGS Rachel

Let it out! We all need to vent at stages of this experience!
It does help!
I can tell you that for 14 years of trial and errors, I’ve had many days where I’ve just felt I’m so sick and tired of being sick and tired!
It isn’t an easy road, but you have to just stay strong!
When you get the right doctor and the right plan, you will know it :slight_smile:
I have discoid lupus and have had moments of pure frustration at looking in the mirror and seeing a “monster” as i called myself looking back!
Ive had days where i would want to just hide inside a cave and not let anyone see me.
Then i think i should just be thankful it’s only “cosmetic” but it really is so much more than that.
Ive tried probably every drug they usually give Lupus patients and had bad reactions to all except Plaquenil and Benlysta.
So far, with me, my best results have been with Benlysta.
As my doctor said, there are soooo many options today that there weren’t years ago so there will be something that works best for you!
It’s just a matter of finding it.
:slight_smile: stay positive, as much as you can - you are not alone :slight_smile:

Don’t feel bad about venting! We all go through times with lupus and knowing that there isn’t a cure makes it even harder! At least you picked the right place to vent. We all know what your going through and def won’t judge you. I hope and pray you start feeling better. :wink:

Hi Laura, you are so right, we all need to get things off our chests so to speak, it really does help. I get the same way sometimes, i get totally sick of being ill all the time. Its a never ending battle, and just as you think you might be getting somewhere, something happens to make you feel as though you are getting somewhere, something then happens to pull the rug right out from under your feet again. Its like one step forward, the two or three back. Its so frustrating, let alone depressing. Thats why its so wonderful to have such great friends on LWL where we can all be ourselves and express how we are feeling for real. Yes, you are so right Laura, we do have to try and stay strong, even if we arent feeling like staying strong. Goodness i really feel for you, having discoid Lupus, i have discoid and Systemic. I was only told this recently, and have started getting these brown patches as well as lots of other marks and sores all over my skin, it makes me feel so ugly looking. Years back i went to a local Lupus Support Group Meeting, now sadly closed as they could no longer have the venue, and the people who were organising it, werent that bothered about pushing to get something else set up, as it wasnt them who actually had the Lupus. Anyway one week they had this camaflouge make up lady from the Red Cross there, to show us who had skin problems how to camaflouge them with this really great cover all flaws make up. And i was pleasantly surprised at how good it was, and also that it was available on prescription off of my doctor, so it was alot cheaper that way. I dont often use it, but if i am going somewhere special i might get the make up out and try and make myself look alot better. I hate the way i look now, and i am with you when you say some days you would just like to hide away, i feel exactly the same. I hate the stares i get sometimes. Sadly i couldnt get on with Plaquenil it damaged the backs of my eyes giving me pigmentation on the backs of them, leaving me with very blurred vision so now i have to try and find ways of really enlarging things to try and make them abit clearer for me, but as its blurred its not much help at times. At least they found out before it was completely too late though, i know i am lucky for that. I try and find things i enjoy and try and make the most of a bad situation sometimes. You are so right, we have to try and stay as positive as we can.
There are so many of us here who are all very similar if not the same in some ways. Anyway bye for now, take care, look after yourself, love and hugs Astrid40xoxo
Laura said:

Let it out! We all need to vent at stages of this experience!
It does help!
I can tell you that for 14 years of trial and errors, I've had many days where I've just felt I'm so sick and tired of being sick and tired!
It isn't an easy road, but you have to just stay strong!
When you get the right doctor and the right plan, you will know it :)
I have discoid lupus and have had moments of pure frustration at looking in the mirror and seeing a "monster" as i called myself looking back!
Ive had days where i would want to just hide inside a cave and not let anyone see me.
Then i think i should just be thankful it's only "cosmetic" but it really is so much more than that.
Ive tried probably every drug they usually give Lupus patients and had bad reactions to all except Plaquenil and Benlysta.
So far, with me, my best results have been with Benlysta.
As my doctor said, there are soooo many options today that there weren't years ago so there will be something that works best for you!
It's just a matter of finding it.
:) stay positive, as much as you can - you are not alone :)

Somebody please, help me or talk to me, I am at the point where everything is irritating me, life, lupus, the dog, society, everything. I just want to take some pills and make everything go away. I stay with this nervous, jittery type feeling all the time, especially in the morning now and no doctor seems to know what is going on. I feel like I am going cray. I get so upset that I can't think sometimes or think.

Hi fighter, i am so so sorry to hear how you are feeling. I also get like you are feeling at times. I have been having a down period and have been trying to pick myself back up again,. Please dont be alone, we are all here for you. You are so special. It must be so awful feeling as you do at the moment. Are you eating properly, as that jittery feeling in the mornings could be a bit of low blood sugar on top of everything else. You are not going crazy, you just have Lupus. Lupus does this to us at times. I am so sorry you are feeling so upset. I sometimes think its good if we have a good cry and get things out of us, with how we are feeling. Everyone here is here for you, you have some really good friends, so try and keep strong. I wish i could just wave a magic wand and take away how you are feeling right now, Anyway i am thinking of you, i will say a prayer for you tonight, sorry i havent seen your post any earlier my friend, please know though that i am there for you, take care, love and hugs Astrid40xoxo

Rachel Simpkins said:

I get like that ALOT!! DONT take any pills...u can CALL me :) actually im home with a flare myself just trying to wait it thru...Very annoying :( Been just wanting to SLEEP....My son in on Spring Break and I told him we would go to gym everyday...HAAAA I went Monday and now with a FLARE....My POOR SON!!! when it rains it pours....We REALLY need a medical break thru for our Disease!! and NO we are NOT crazy.....I get wound up alot too.

Your Normal! XXs Rachel

fighter said:

Somebody please, help me or talk to me, I am at the point where everything is irritating me, life, lupus, the dog, society, everything. I just want to take some pills and make everything go away. I stay with this nervous, jittery type feeling all the time, especially in the morning now and no doctor seems to know what is going on. I feel like I am going cray. I get so upset that I can't think sometimes or think.

Hi Rachel, i was just about going to say night night to my laptop, and there your message was, so i just thought i would wish you luck for tonight with the witch hazel. I really hope it works. Keep strong my friend. I am here for you when you need me. Thankyou also for being there for me when i have needed you. Good luck for tonight, i will pray it works, take care, bye for now, love and hugs Astrid40xoxo

Thanks Rachel and Astrid40, for feeling my pain. I am praying hard and hoping that the Lord will hear my cry and give me the strength, that I need to get through this. I just have such a strong feeling of worthlessness, and no one seems to understand or care. People, say they care and understand, but thats not what I feel from them. Even my own husband acts like he is not as concerned as he used to be. I don't know maybe its just me. Let me pray about it for abit, and get back to you. Thanks for all the concern that you have expressed. I love my LWL family. Many blessings and hugsxoxoxoxoxo

Ann thanks for the advice, I thought it might be a panic attack as well, I went to the ER three days ago, because my heart was racing so fast, it felt as if it was going to jump out of my chest and the jittery, nervous feeling was there and I was short of breath. They ran different type of test on my heart, and everything came back fine. Is this normal with lupus, I mean the anxiety attacks. I have a hard time dealing with it sometimes. I do have anxiety meds, and they help, but they make me soooo sleepy.



Ann A. said:

Fighter - When I get a jittery feeling and everything annoys me, I tend to think of it as an anxiety attack. Sometimes it goes even farther and becomes a full blown panic attack. When tat happens, I take single does of my anti anxiety medication and crawl back into bed. Then I try to find someway of centering myself. Right now what works best is looking at the picture of my two week old granddaughter. She hasn't been around long enough to irritate me. And I know that even with my limitations, her life will be better with me in it than without me. Over the past few days, i have been calling my daughter and she turns on the computer and we Skype - me and the three year old and me and newborn. Do something good for yourself. We love you.

Thank you Rachel for VENTING... I am in the mood to help and remain positive admist all the negativity brought into my life from Lupus. Sometimes, my plans are changed because of the Lupus and I can't focus on anything that is positive, then I am angry with myself and feel guilty and think nothing positive will happen in my life. See the pattern?

I am trying to break the cycle and not focus on the negative so much, it is difficult when people say things about auto immunes that are not presented in data. Then I remember such a wonderful group as LWL and the survivors/fighters on this site confronting Lupus for more than 20 years it gives me so much hope as I am relatively young and I have this illness. Every post about a wonderful event or when someone states they are fighting SLE lupus for more than 25 years with husband and young children, makes me cry, as I know there is hope for me, but I must take this illness one day at a time.

Now, I am trying to find a good RA whom is compassionate, knowledgable and will tell me the direct truth, not a hybrid of facts with allusive commentary. With Lupus, I do not read between the lines, I can't with my health. I need to know what am I dealing with and how will it affect my future.

So, venting Rachel is good, we are all in this together.