There is not a single one of us that haven't felt the way you are feeling at the moment. You definitely need to find a new Rhuemy because even if you "think" your meds are working, your tiredness and fatigue as well as your mental health might indicate they are not, especially with the low thyroid issue.
I know (all too well) the feeling of being a burden on our friends and loved ones. However, it sounds as if your husband took his vows seriously...especially the part about "in sickness and in health". You are incredibly lucky in that regard and when you have the energy do something special for him to let him know that you do appreciate all he does. I leave little love notes in hidden places, or write it in "dry-erase" on the bathroom mirror. This takes no energy and let's him know I am thinking about him and not just me.
I do agree with the rest of the group, though as it sounds as if you are simply trying to live the "BL" life. You can still have a wonderful, but perhaps not the same, life. The "spoon theory" or whatever you choose to call it, should be part of your day moving forward.
We are all guilty of overdoing it when we feel good, unfortunately we ultimately pay for it. Usually, for much longer than we experienced the good.
Balance in your health will help with balance in your life.
Brava for coming here to vent and just let it out. We are a group that truly understands and we, as a group, have found some really good methods for trying to live as normal a life as possible.
A year ago, right this very minute, I was in ICU on life support fighting for my life. I was taking Benlysta infusions and my body couldn't handle the severe side effects and I developed a severe cellulitis infection that turned into sepsis while I was still at home. By the time I got to the ER, I was in critical condition and my lungs gave out 3 days later. The doctors put me in a propofol coma and put me on life support...tubes coming out of me everywhere. This went on for 5 days...I was asleep the whole time. It took two days more before they removed the intubation tube and another day before I was weaned off of the feeding tube. I spent 2 1/2 more weeks rehabing my body to be able to walk, talk and eat again. It was hell.
The doctors caught it in time, or else I wouldn't be here today. I had major issues with being brought back to life....I still do. Because of my faith, I have come to terms with my situation and it isn't MY decision when to leave this world. The Lord kept me here for a reason. I believe it is to continue to fight for a cure for SLE Lupus. My body is broken and I'm in constant pain. Every day is a challenge, but I am determined to do the best I can. My rheumatologist has been with me for almost 10 years and he is my guardian angel. He refuses to give up on me and always coaches me when I break down in tears in his office. Recently, I wanted to complete my DNR forms because I'm just so tired of being so sick. Dr. C. talked me out of it. He refuses to let me give up.
We go through so much and nobody understands what it is like unless they experience it, too. I cry and have meltdowns, but take my medications and hope they relieve some of the side effects. I pray that we will find something that will work a miracle for the millions of lupus fighters all around the world.
My prayer is that we all find some kind of peace and understanding. Do what you need to do to get some relief....less stress....be with positive people....I've had to let toxic people go from my life and it is a huge relief not to carry burdens around any longer.
We are here for each other...this group is PRICELESS!
A few more comments, I used to be very healthy and was always going and doing with friends and family. I had to take a disability retirement at the age of 45, in 2007, and I lost a lot of friends in the process. They couldn't relate to my not being able to participate in the activities that I once was so active in. My husband and I used to travel quite a bit and I haven't been able to go anywhere since 2007. My body tires out so fast and I have to take naps all hours of the day and night.
It was a tough blow to have to decline invitations and commitments, but I had to face reality and do things that were healthy for my new body. I don't owe anyone any explanation. My SLE is my new life and it takes priority.
I've lost a lot since getting so sick, but I've gained SO much in return! I've realized what is truly important in life....precious friends who need support, getting the word out about SLE Lupus and how we need to find a cure, enjoying each day that I am able to wake up and get out of my own bed. Listening to the birds and hearing the wind blow outside of my window and appreciating the value of LIFE....it is truly precious if we take the time to slow down and appreciate what is around us. My faith is stronger than ever and I know it isn't my turn to go. My mission isn't complete.
Lori is it your hubby besides your health as i know you suffer bad where your healths concerned, if you don't want to say i totally understand but i do hope for your sake is attitude as got better.
Your loving friend Terry :) xxx
loriken214 said:
Hi my Dear Terri!
I've been having a hard time lately, but please know that I think of you all of the time...much love!
Lori
Tez_20 said:
Hi Lori,
Lovely to see you on here and i hope your keeping fine my friend with your health?
"Thank you for the input" on last years bad experience as it helps other's realize what we suffer and i hope to god your not that bad this time :)
loriken214 said:
A year ago, right this very minute, I was in ICU on life support fighting for my life. I was taking Benlysta infusions and my body couldn't handle the severe side effects and I developed a severe cellulitis infection that turned into sepsis while I was still at home. By the time I got to the ER, I was in critical condition and my lungs gave out 3 days later. The doctors put me in a propofol coma and put me on life support...tubes coming out of me everywhere. This went on for 5 days...I was asleep the whole time. It took two days more before they removed the intubation tube and another day before I was weaned off of the feeding tube. I spent 2 1/2 more weeks rehabing my body to be able to walk, talk and eat again. It was hell.
The doctors caught it in time, or else I wouldn't be here today. I had major issues with being brought back to life....I still do. Because of my faith, I have come to terms with my situation and it isn't MY decision when to leave this world. The Lord kept me here for a reason. I believe it is to continue to fight for a cure for SLE Lupus. My body is broken and I'm in constant pain. Every day is a challenge, but I am determined to do the best I can. My rheumatologist has been with me for almost 10 years and he is my guardian angel. He refuses to give up on me and always coaches me when I break down in tears in his office. Recently, I wanted to complete my DNR forms because I'm just so tired of being so sick. Dr. C. talked me out of it. He refuses to let me give up.
We go through so much and nobody understands what it is like unless they experience it, too. I cry and have meltdowns, but take my medications and hope they relieve some of the side effects. I pray that we will find something that will work a miracle for the millions of lupus fighters all around the world.
My prayer is that we all find some kind of peace and understanding. Do what you need to do to get some relief....less stress....be with positive people....I've had to let toxic people go from my life and it is a huge relief not to carry burdens around any longer.
We are here for each other...this group is PRICELESS!
I've learned to just say NO when I'm tired. You have to take care of yourself or you won't be there for your family. You need to sleep to regroup, you may want to talk to your Dr about what they recommend. I take sleeping pills that seem to work
Hello Island Girl, I totally know how you feel, I am happy you already have a husband, my fear is that if I get to sick, if I have a major flare that causes a lot of damage to my body that no man will want me, because I am sick, I am a loner so I feel that sometimes my family don't understand me when I don't want to be a part of family gatherings and I would prefer to stay home. l wish you nothing but the best of luck. God bless you Island Girl. :0)
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