Two days ago I just finished yet another three day stay in the hospital, I'm just starting to feel better and just wanted to express how frustrating each experience is becoming. I don't believe that I have another vein left in my arm or hand that can be used. I always start out the same "Let me warn you I'm a hard stick", well this time was no different. I'm usually upbeat and take each of the four to five attempts like a champ, but this time was different. As the nurses and then the doctor attempted to put in an IV each attempt seemed to take a little bit more out of me. My laughter and upbeat personality turned into tears and depression. I was wishing, hoping, praying and pleading to be anywhere but here. It wasn't that the staff wasn't sympathetic because they were, it was just that I have now become extremely depressed and tired of the fight that it requires just for an IV much less the pain and everything else that Lupus brings with it. Well now two days later after a bit of clearer thinking, I received a call from my disability lawyer stating "well I received a date for you disability hearing its scheduled for wait for it.......September 20th". Wow really on top of everything else now my hearing is four months away, it has been 2 years 3 months and 2 days since I filed, how am I going to make it another four months? There are so many days I don't know how to endure this thing called LUPUS and so many days I just want to have a day where I don't feel tired or i'm not in pain or i'm happy just to be me. Anyway, through it all I have to look at all the things that I am grateful for and that is my family. My kids and grandkids keep me grounded but most of all my Lupus family has been there and has helped me realize I'm not alone. Thank you to each of you that has given kind words or advice when I needed it because this depression has seemed to dig its heels in and refuse to leave but I know that I will bounce back through it all.
My heart goes out to you; if you (of all the people I admire) are feeling depressed and weary then I know it Lupus has really taken its toll on you.
So I am here to refill your cup of the stuff that keeps you going: truth.
here is a list of truths
1. Lupus sucks but your foundation-attitude is solid and is made up of the materials you have gained from the experiences in your own life: you have been blessed by a spirit of love, power and self control and I am willing to bet by the time you read this the will already be peeking through the clouds. right?
2. You are 100% right, we are here for you.
3. You are 100% right: We care.
4: We pray.
5.We have extra hope in our reserves to share with one another when they are down and out.
6.We. have faith that you are already on the upswing of the up and down cycle of Life on earth.
7. Here come better days: http://youtu.be/yTw1IB3MuOI
As I read this tears flooded my eyes. I can sooooo relate to this. Every time I'm in the hospital they have to call the IV team to replace my IV, My veins are so small and they hide and roll. Then when they get someone that can get the needle in, it comes out eventually, and here we go again. So, they finally put a portacath in for me. This way if I do go to the hosp, or even here at home, they have easy assess to a vein and can just poke it in there.....no 20 time of poking me anymore. It is a surgical procedure, but just takes a little while. The doc that placed it said he even had a hard time finding a vein to go to on the chest area!!! I am so sorry you're going this right now. It is so difficult....this evil thing called Lupus. I don't know why we were chosen to carry this burden, but we've got to stick together to hold each other up, so here I am to lift you up in prayer and I know you can get through this....just for today....we'll worry about tomorrow when tomorrow comes.
Feel Better, your friend
angel
I admire your honesty! I am sure all of us at 1 time or another have felt this way. What you wrote shows that you have grace, strength and courage. I admire you. Lupus is a life sucker outer. I was depressed and crying all alone one night and ran into this site. It's wonderful. Wishing you good health always.
Thanks Janice,
I knew I could count on you for a refill and you are right the clouds are lifting. Thank you again for you words they mean the world to me.
janice said:
My heart goes out to you; if you (of all the people I admire) are feeling depressed and weary then I know it Lupus has really taken its toll on you.
So I am here to refill your cup of the stuff that keeps you going: truth.
here is a list of truths
1. Lupus sucks but your foundation-attitude is solid and is made up of the materials you have gained from the experiences in your own life: you have been blessed by a spirit of love, power and self control and I am willing to bet by the time you read this the will already be peeking through the clouds. right?
2. You are 100% right, we are here for you.
3. You are 100% right: We care.
4: We pray.
5.We have extra hope in our reserves to share with one another when they are down and out.
6.We. have faith that you are already on the upswing of the up and down cycle of Life on earth.
7. Here come better days: http://youtu.be/yTw1IB3MuOI
The tears are flowing on my end as well, you really understand the pain I faced. I believe eventually I may have to have something permanent put in and at first I was against it but I am now reconsidering. I will get through this today and then address tomorrow when tomorrow comes. Thanks for holding me up.
Angel312 said:
As I read this tears flooded my eyes. I can sooooo relate to this. Every time I'm in the hospital they have to call the IV team to replace my IV, My veins are so small and they hide and roll. Then when they get someone that can get the needle in, it comes out eventually, and here we go again. So, they finally put a portacath in for me. This way if I do go to the hosp, or even here at home, they have easy assess to a vein and can just poke it in there.....no 20 time of poking me anymore. It is a surgical procedure, but just takes a little while. The doc that placed it said he even had a hard time finding a vein to go to on the chest area!!! I am so sorry you're going this right now. It is so difficult....this evil thing called Lupus. I don't know why we were chosen to carry this burden, but we've got to stick together to hold each other up, so here I am to lift you up in prayer and I know you can get through this....just for today....we'll worry about tomorrow when tomorrow comes.
Feel Better, your friend
angel
Thank you Bernadine and yes this site is awesome...just the right medicine for the soul.
Bernadine said:
I admire your honesty! I am sure all of us at 1 time or another have felt this way. What you wrote shows that you have grace, strength and courage. I admire you. Lupus is a life sucker outer. I was depressed and crying all alone one night and ran into this site. It's wonderful. Wishing you good health always.
Hello NuDirection,
I'm so sorry to hear what's been happening with you and to overcome the depression fight hard because lupus thrieves off it and keeping strong for your family is the main issue and you know your second family are here for you, with full love and support.
((Hugs & Kisses your way)) Love Terri xxx
Thank you so much for the support...I really needed the encouragement and I'm fighting extremely hard to get through this depression.
Tez_20 said:
Hello NuDirection,
I'm so sorry to hear what's been happening with you and to overcome the depression fight hard because lupus thrieves off it and keeping strong for your family is the main issue and you know your second family are here for you, with full love and support.
((Hugs & Kisses your way)) Love Terri xxx
NuDirection, your account echoes my feelings on certain days, when I am laying around for the 5th hour in a row and not going anywhere because I simply can't, without my knees feeling like they are going to buckle and I am at times extremely sad because I am a sole provider and have no one to fall back on. Be thankful that you are able to wait for the disability and know that four months will include the summer months, which can be fun if planned out.
Your story reminds me of my grandmother's battle, because she was not properly diagnosed with Lupus, her treatment was never provided. She spent 80% of the time in the hospital for long extended stays citing asthma was her problem. But, it wasn't. So, when I feel down and depressed because of my symptoms, lack of mobility at times and frustration over not doing certain things, I just think and am thankful, I can still feel these things and emotions, then adjust my expectations accordingly to what the new me can handle. One thing I am becoming a practitioner of are massages, with heat, they target the areas being attacked and relax the muscle for quick relief.
Hello NuDirection,
Your welcome and we all need full support at times as it can be such a battle, i've been there that many times with different issues it's made me lose the will to live and regarding depression i suffer with that badly and it's hard to pull out of but you'll get there.
All my love to you. xxx
NuDirection said:
Thank you so much for the support...I really needed the encouragement and I'm fighting extremely hard to get through this depression.
Tez_20 said:Hello NuDirection,
I'm so sorry to hear what's been happening with you and to overcome the depression fight hard because lupus thrieves off it and keeping strong for your family is the main issue and you know your second family are here for you, with full love and support.
((Hugs & Kisses your way)) Love Terri xxx
I just wanted to check and see how you are doing.... I, myself am NOT doing so well today, but I will get through this....plz let me get through this w/o going through what you did....hospitalization! I wanted to tell you before but for got that I had a three yr wait altogether for my SSD, and it's becuz there's such a backup down state and one of the judges was in the hospital. They told me it was getting worse....the wait that is.Anyway, I know that waiting is the hardest part. I also had to have two hearings becuz the dork, doctor on the SSD side didn't show up, but did a phone contact and was a total jerk....sorry...but even the judge was making some faces as he spoke on the phone. Like my attny said, he needs to be here to see you. The second hearing was scheduled and the doctor there asked me a couple of questions and looked at my file and said I don't have any doubts that she needs this supplemental income, and the judge ruled in favor ;)
FEEL BETTER ;)
Angel thank you for checking and I'm still having issues with the lupus/depression. I pray you strength to get through whatever your day is bringing you. I have an aunt that had a told three year wait as well, so I wasn't expecting overnight but three years is hard to swallow when you are holding on by a thread. I'm nervous about the hearing because of the different looks of Lupus and how people see it differently. Anyway, please feel better soon and no hospitalization for you or me. :-)
Tez
I agree and the funny thing about feeling like I've lost the will to live is that as soon as I hit a flare and have a hospitalization I'm fighting like hell to live and since that happens I know I'll make it. The sun is shining today and I'm in pain and depressed but I'm still Smiling Through It All. Much love and wishes for good health to you.
Hello mate,
These flares can through our moods all over the place i've noticed that badly...one minute i'll seem ok and the next pouring my heart out with depression which as hit me out the blue.
It's making your emotions throw to not wanting to live and being hospitalized is giving you a wake up call...i bet there's many member's in the same situation..i mean i'm coming 44 this year and i've told my hubby i hope to god i don't stretch till i'm 50 because each year my skin gets alot worse and pain just never eases up and i think doing a stretch of things since i was 18 as actually took it's course on me now mentally.
Your only young and what years ahead of you you've got enjoy although some moments are'nt pleasant but i do wish we had some nice weather here...it's not that warm even though it's the middle of may and we're getting loads of rain and little sun..the sun alone brightens me sometimes plus the radiators are still on here.lol
I really hope your case for disability is approved as those things can be a nightmare on their own.
Stay strong my friend & all my thoughts are with you. xxx
NuDirection said:
Tez
I agree and the funny thing about feeling like I've lost the will to live is that as soon as I hit a flare and have a hospitalization I'm fighting like hell to live and since that happens I know I'll make it. The sun is shining today and I'm in pain and depressed but I'm still Smiling Through It All. Much love and wishes for good health to you.
I'm in a bad flare right now, and know soooo much what you mean, but somehow, someway, we've got to reach waaaayyy deep down inside and find that something that keeps us going....even if we are kind doing it blindly so to speak. I continue to pray for you that you can stay on top of this thing....and eventually you feel like you are where you are supposed to be ;) The angels are with you....
Thank you Angel I pray that your angels are helping you through you flare as well.....I'm digging deep to find that inner strength and even though it seems a little rough right now I'm determined to make it.
Angel312 said:
I'm in a bad flare right now, and know soooo much what you mean, but somehow, someway, we've got to reach waaaayyy deep down inside and find that something that keeps us going....even if we are kind doing it blindly so to speak. I continue to pray for you that you can stay on top of this thing....and eventually you feel like you are where you are supposed to be ;) The angels are with you....
Nu
You are never alone. Im glad that you have your family cause with out my family and there support I dont know what or where I would be. I hate to hear stories like this. I have tears running down my face. It really saddens me that us lupies have to go through the pain and heart ach that we go through. I know this sounds bad but sometimes I wish that this disease jumps off the good peoples and jump on some of these murderer and rapest of the world. Why is it the good people of the world have to go through such ordeals. I always tell my self that God wont put more on us then we can bear. I really hope that you get better. And for court date my lawyer just informed me of mine which is in July I been waiting almost 3 years for mine. I really hope and pray that we are approved. Im going to be checking in on you(((BIG HUGS)))
Prayers are with you. When I have a good day I try to convince myself that it's not all that bad but on my bad days I feel like it's never going to change. Unfortunately my bad days out number my good ones by far. I love this group because I know everybody here understands exactly how I feel. Hang in there my friend. I didn't mean to enter this reply but I don't know how to delete it. That's why you've got 2 from me. Oh well, at least you know I'm thinking of you.
Prayers are with you. I have not started the disability process yet but I know I have to. I was working from home for a little more than 2 years but I had to keep cutting my time back until I had to quit in October of last year. Right now we're getting by but it won't be long before we won't be able to do it anymore. On my good days I think that maybe it's going to get better but on my bad days I am convinced it won't. My bad days outweigh my good ones by far. I only joined this group recently and am thankful for the support I've found here. My family is very supportive but I love being able to talk to people that are feeling the same things I am. I love your last sentence "I will bounce back through it all". Praying for strength for you to do just that.