Good morning everyone. Today is a special day for me and my family, and probably for many of you as well. It’s important to me to give my family the best Easter possible. However, I’m upset because I’m really struggling today. I’m exhausted, I’m in a lot of pain, and I have so much to do. It’s going to be a long day. There’s nothing more I want to do than to make my family happy and put a smile on my face. But, it’s going to be a real struggle today. How is everyone else feeling today?
Thinking of you. I know the feeling and how hard it is. Rely on your family for help. They love and support you! That’s what family does! God will give you strength to get thru the day! Be well!!
Happy Easter to everyone! Good luck to you, Kim. You will make it thru the day and everything will be ok. Just go to bed as soon as you can! I am feeling well today and I am always happy when I feel well. I am cooking for 3 people and it is a pretty simple meal.I think my Lupus is in remission so I am joyful for this.
I am too having a hard time. I lean on my three oldest to help me push through and when I am ready to throw in the towel I look at my little ones and keep pushing. Stay strong and happy easter
I took a 3 hour nap after the Lupus walk yesterday. One of my kids said they wanted to make dinner today and to surprise us. She went to a sunrise service so she could be home and have the kitchen to herself.So we are on out way home from church now. This is a big help for me. She’s a sweetie pie!
I am having an awful day! Been in so much pain that it's hard to walk, sit or lay down. In addition, I have a colostomy bag and am scared that I have a blockage cause it is not producing and have lots of pain in my abdomen. So, I sit here alone - begged out of dinner. Going to read and take a nap. Can't find much to be thankful for today...Susan
Thank you for your thoughts and prayers. And Susan, know I’ll be thinking of you and praying for you today as well. I would get examined soon if you think you have a blockage.
To compound the difficulties of the day, I just received a call from the hospital that my 94-year old grandfather was admitted to the hospital with both viral and bacterial pneumonia. He lives with us, but has been in rehab recovering, seemingly well, from a broken hip. Just the day before yesterday he appeared strong and lucid and was making great strides in physical therapy. I was taken aback to receive the call from the doctor asking me what his wishes are, being I’m his health care proxy. The doctor isn’t feeling confident that he’ll be able to recover from this given his extensive medical history. I’m a bit in shock he’s taken such a sudden turn for the worse. I’m just saying to myself,“Thy will, not mine, be done”.
Should any of you care to say a prayer for my grandfather today, it would be greatly appreciated. I suppose all we can pray for is his comfort until we see which way this goes.
Thank you, fellow lupies, for your continued care and support! God Bless you all!
I have been up since 4am… I’m doing things in small spurts. Resting in between. Soothing music playing softly in the background candles burning. Hope you rest between things that must be done & also my whole family helps so that it’s not all on me. I hope you have the same support because it’s so much easier on me. Happy Easter 
Well, I managed to get out of bed and take a shower....haven't dried my hair yet...I have to get to the grocery store but I really want to go back to bed. :) So instead I'm sitting at the computer with coffee hoping that some energy kicks in!
Happy Easter!
NIkki
Hi Kim, I hope you make it through the day a little easier knowing so many people out there are thinking of you and relating to you in so many ways! I lucked out this Easter because my parents are doing the cooking. But with my brain fog lately Easter completely snuck up on me and I was out late last night buying treats for my little guy. Normally I have the house decorated and I plan an elaborate hunt filled with puzzles/riddles/clues. Not this year, I could barely get through the days this week let alone be creative! Thank god I remembered to get his treats last night. He would have been DEVASTATED if the Easter bunny didn't show up ;) Mother of the year trophy would have gone to me this year for sure!!
Hang in there Kim and Happy Easter everybody!
Happy Easter to everyone. Thank goodness I don’t have any little ones at home now to get the Easter goodies for. I haven’t been sleeping well for awhile and last night was no different. I finally managed to dose off about 2:30 am and was awake again at 4:30am. Our church had our annual Sunrise Service just down the street by the river and since my husband is an elder in the church and was doing the music we had to attend. It was to start at 6am so I just stayed up. The service was wonderful with a great turnout but I was exhausted and hurting so bad with no where to sit during the whole thing. We got home and had a few hours before church so I rested during that time. Service was great and I’ve been lying down all afternoon since we got home. I wanted to go visit our youngest son and the grandkids but just don’t have it in me today. I hate it when I have weeks like this. So frustrating. Thank God I have a sweet husband that doesn’t mind cooking on my bad days.
I actually decided to give myself a day off, and do as little as possible today. My oldest (son) came home for Easter, while he BBQ’d, I spent my time visiting my grandchildren, 10 of the 17. And I won’t be feeling worst tomorrow.
Sorry to hear so many people are struggling. I am the same today. I went bk home yesterday for my ms 80 the birthday it was a great day but as usual I am suffering today for it. I started off quite enthusiastically but by mid-day I was exhausted and just needed to sleep. I ask myself when will this end because I’m fed up feeling this way and trying to get people to understand the condition. Well at last I can go to bed just wish I cud sleep when I get there. Moan over now. Lol. Happy Easter everyone and hope tomorrow is a better day x
thanks for all your good wishes. Good news: blockage has let go and Easter is almost over. Hope your grandfather is not in pain and resting well. It's so hard to be in the position of giving health directives. My heart goes out to you. Everyone else..we made it through another day!
I found an article about fatigue that I have given to some friends and family. It was written for Sjogren's but it is equally true for Lupus: http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue
Hi Kim,I’m having a bad day myself,today is also my brothers bday,he died in a tragic car accident and I grieve for him on a daily basis,I try to not let it effect my family,my pain is mine,and it’s my cross to bare…but sometimes I have to step back and cry when no one is looking…I got up today praying for the pain to go away just for the day,I’m proud of myself,I wasn’t caught crying in the laundry room and I feel like I did a good job of faking it…FAKE IT UNTILL YOU MAKE IT.God carried me through the day and boy do I feel thankful!!.I get in the shower every morning and tell myself,“I am my own hero”!!! A tattoo I plan on putting on my foot for my bday next week…we our all our own Heros and we will help each other tackle the many challenges of lupus,as well as all the other issues we face…I hope everyone got a little help today where they needed it the most…Happy Easter…
Hi everyone I'm not new to Lupus but I am new to Scleroderma and Sojgrens. I've been on short term disability since 12-18-13. I was in the hospital for a month I'm now on O2 and I'm exhausted all the time. My Doctors want to go for long term disability. My Rheumy told to try on my own first, I'm terrified they tell I should get it with all my problems. I live in OH not sure how hard they are. Being seen for severe depression and anxiety. I was 13 yrs old when I lost my spleen d/t Lupus. Top it off I'm a single mom of a brilliant 16 yr old son. I feel guilt because I can't enjoy things I use to do with him. Does anyone have any helpful wise answers for me.
Rhonda