Lupus Support Group

I haven't been around much the past few weeks I have just had a million things go wrong. I have been working to much since January but less at home and more site visits which requires all or most of my energy. Last week they asked me to work out of town for a week so I left last weekend even though I had promised my husband that I would do a charity event with him tonight. So I arrive at the hospital Monday to start our audit and they were not prepared and found out they couldn't be prepared until Weds. so my home office had total chaos trying to figure out what to do with me for two days. It was constant phone calls and emails. In the end I worked remotely from the hotel room for two days. Then I was more stressed out that we could not possibly finish the project by the Friday deadline and then letting my husband down for the event. So I stayed later at my site Thurs and went in early today so that I could try to finish and to my amazement was finished at 11. So I made the 3.5 hour drive home and was able to get to the charity event (a little late) but I made it. The kicker to all of this is that my cousin was recently hospitalized due to rejection of his transplanted kidney and after many tests and about 5 weeks of being hospitalized they realized that he had Lymphoma and last weekend his bowel perforated and he had a surgery a couple times in the past week but tonight his parents removed life support because the cancer originated in the colon and had spread through the abdominal organs as well. He was 35 and had so much life left to live. I got the call in the middle of the charity event that I worked so hard to get to and had to maintain a smile although my body is tired and aching. I am reminded that I don't have an endless number of days and I struggle so much and feel like I am always testing Lupus because I don't want to miss all the amazing things going on around me. I am having a rough time and my usually positive has taken a back seat to exhaustion. I just spent some time with my parents and then the first thing I thought of was all of you and if I need that encouragement you are the ones who always make it happen. I have to say thanks to Lynette and Bryan for helping me the last few days. I was having a hard time accepting that in one week he was hopeful and ready to go home and then within hours fighting for his life.....only to lose. My heart is heavy. I know that it is important to have faith and know that these things happen for a reason but sometimes those reason are really hard to accept and understand. I know tonight I am blessed to have wonderful friends and family. I guess that is where I get the strength to keep trying.

April

Oh April you did have a busy week, and ending up with your cousin dying. You must be so worn out. I hope you can relax a little over the week-end. My thoughts go out for you and your family. Take care

Alison

Ali, you posted so fast. Thanks. I am feeling like the river of tears is coming and then I will be able to sleep. It was more detailed and stressful than what I posted but would have taken a long time to write and my brain is tired. My husband is making me a pancake. LOL. Little things mean a lot sometimes. Then hopefully sleeping with no further issues.

Oh, April, I'm so sorry for your loss. I recently had a loss in the family so I know a bit what you are going through. Everyone grieves differently though. It sounds like you have been burning the candle at both ends and that worries me. I was doing the same thing when my bad flare hit. Not trying to compare or anything, I can just empathize. I've been have a really tough time with the loneliness lately. I love having my own place, I just get down without any face time w/anyone. I only live 50 yards from my parents and usually only see them when I walk over for to get morning coffee. There house is so big now, that a lot of times they don't even know I was there. My dad only comes over to fix things and my mom if she is bringing the puppies for me to watch and sometimes laundry (I don't have a w/d in my apt...wish I did). I watch there dogs every time they ask and anytime. Sometimes that has meant having 5 more dogs to watch! I had only asked her in the past to come check on them, but I have been watching hers at my house so much, I asked if they could stay with her while I went to my appt, she said no! I couldn't believe it. Sorry, this is about you not me!! I really hope things slow down for you. Do you have to work this weekend? If not, please take it extra easy!!!!

Amy

April, Just got your PM and read your post. I knew most of what you posted ,already, but You truly brought tears to my eyes. Sending you some more of my seemingly endless source of energy to help you through this difficult time. A sacrifice on my part,but a neccessary sacrifice as You are in need of it more than I. Hey...what are friends for?! LOL! I am glad and touched that I was able to help you. You have also helped me. Sleep well and cheer up,litte buckaroo...life's not over. We will chat this weekend sometime...when you emerge from your coma! LOL! Take care and you know where to find me when you need me..."Bryan.com" LOL! (IJ) Little Brother Lupus,Bryan

Post edited by: J3man, at: 03/11/2011 10:19 PM

Aw April, I had no idea I am sorry that you have gone through all of this and had to endure so much! You and your family are in my thoughts and prayers my friend and I am sorry for the loss of your cousin. If you need me I am always here for you. BIGGEST HUGS EVER!!!!!! ~ Julie

Dearest April. I'm sorry to hear you have suffered so much stress and loss. It must have been devastating to face so much pain and loss, and needing to muster the strength and courage to continue with your daily living. You are indeed a strong and courageous person. I send you my condolences for your loss, and wishing you to recover soon so to return to your friends on the forum. Marie

April....Looopie is so right, you are such an amazingly strong person but with such difficult circumstances it's hard to be so strong....we are here for you our dear friend and just know that my prayers will be with you and your family.......I think having the tears flow is a good thing. Take care

Eva

Thanks to all of you. I think the hardest part of Lupus for me is wanting to get so much done and have a full life but struggle with setbacks as I am sure we all do. I try to beat this with a positive attitude but there are those days that the overwhelming reality washes over you and you just have to allow the emotion to get the best of you for a moment. I look back at my discussions that I start and I believe most or all of them are reagarding the emotional struggle of Lupus. I have somehow come to terms with the fatigue, pain, and all the other annoying symptoms. I manage to somehow make it to the end of each of my days getting most of the things done that I need to do. The days that get me are the ones like this week when I have so many challenges and I am overwhelmed and unable to regroup. I know it is ok to cry and realize that even the best fall down sometimes and I am hardly the best but will also fall down. I am spending the weekend trying to get some rest before another crazy week. I am hoping that gives me the strength to regroup.

April