I was diagnosed with Lupus last fall at the age of 41, my symptoms started in 2006. Since then I have lost my Mother in 2007, my Father in 2009 to Alzheimer's, my 49 yr old Brother June 2013 due to Alcohol poisoning. Later that month, ran over my beloved doggie, then the most awful tragedy of all happened when I lost my 9 month old granddaughter in a horrible accident in Nov 2013. I hurt so much from all the grief. I get so mixed up with everything, I become so confused and can not find the right words to use at work, and home. Luckily both are supportive of me and try to help. I have been to counseling and the tips do not work for me. It seems that the more time that passes the more emotional I am. I do have a lot of support through family, co-workers, and my church family. But for the life of me I feel like I am in a snow globe that is being shaken constantly. I am in pain most days. If I clean house and do to much it gets me down for the next few days. If I get to stressed at work or home, I start to itch and break out. I can not get in the sun it drains me. I have Sjogren's so I have really dry eyes, and mouth. I am just at a point to where I am not sure what to do. I honestly am trying really hard!!! I just wondered how other people with GRIEF deal with the LUPUS all at the same time? Feeling burned out.
My heart goes out to you!! I also have lupus and sjongren. Death has struck people close to me too, my Mom and Dad died but the one that really took my heart out was my sister. She died of a brain tumor and she was only 33 years old. My Mom was the last one to die and after her death I was a wild animal; a version of me that I never new existed. The raw pain that I felt got me really sick and even tough I had been feeling sick for a few years back I had never felt that bad; it was then when I found out I had lupus and sjongren. It was too much ! I spend two years down and under, i couldn't do anything and most of all I felt that nobody understood my pain and that made me feel so lonely. All that made get sicker.
Look, not a day goes by I don't shed a tear but I promise you, you will get better. You need to help yourself on this harsh times or your body is going to pay the price. For now you have to help your mind and heart to find acceptance, and that comes only with lots of time, it doesn't happen over night. In the meantime you have to relieve your mind of the pain you are feeling. I am not a religious person, even though I believe there is a balance in nature…. I don't know something that connects everything, Meditation can help because it teaches your brain to be silent, silence brings a relieve from all the memories that are causing so much pain. Regarding sjongren it helps tremendously to cut coffee, alcohol and spicy food. I meditate every day on my daily walks, I find contort in nature. I promise you the sun will come out for you again!! wish you the best! i wish I could take you with me on my walks. :)
I am very sorry you have had to go through so much. I can not imagine your grief. I lost three dear friends to cancer last year and it has been rough, but I know it does not compare to family, especially a grandchild. We are here for you, hang in there!
I’m so very sorry for your loss. It’s hard enough grieving when you don’t have a major health issue yourself. We all know that stress is not good for us lupies. I’m not thankful that I’m not dealing with the grieving process right now but I am going through a pretty rocky time at the moment. The first thing I did when I started getting that uneasy feeling was to go straight to my doc for stronger anti-depressants and anxiety meds (I have been diagnosed with PTSD, panic disorder, social anxiety disorder, dysthymia…the list goes on) but nothing helps more than to find a professional therapist you trust who understands how lups works and how stress and grief can affect it.
I’ve been seeing therapists since I was 11, so I’ve seen them all…the ones who just sit there and stare at you, the one who answers every sentence you say with “how does that make you feel” and the ones hero have to look at their notes when they are talking to you because they don’t remember your name. Thankfully I have found a few godsends over the year, including my therapist now. She has my back and will never steer me in the wrong direction but she also gives me a kick in the patootie when I deserve one.
The hunt for one of the good ones can be tiresome but it’s so worth it. When you are looking, ask friends or doctors if they have any they would recommend. Check out the websites that score therapists and doctors. When you call, don’t be afraid to ask questions…are they Freudians or Jungians, have they delt with clients with chronic pain, what do they specialize in. If a therapist tries to brush off the questions then move on to the next one. If you leave them a message and they don’t return it within 24 hrs, I’d move on then too. My therapist was just at a conference and she overheard a conversation between three therapists saying they NEVER return a potential clients phone call until a week passes and they don’t return current clients phone calls (one would hope an emergency call is exempt from this) until the next day at the earliest. One woman said she likes to see how they react when they aren’t in control of the situation. I just call it evil…and my therapist had a slew of much more pungent worst to slam them with.
I got a bit off topic, I think that anyone dealing with chronic pain like us should have someone we can go to to get an outsiders prospective on things, and grief is definitely something that talk therapy and some behavior modifications may help like meditating, visualization techniques or EFT commonly called tapping.
I really do send you lots of warm wishes and I hope the sad eases up on you really soon.
Big hugs,
Doll
I am so sorry for your loss. I have only lost my grandpa and my father in law and I think of them daily.I couldn't imagine the grief you have endured and add to all of that Lupus as well. I will pray for you God is with you always even in your time of grief he grieves with you. It is great you have support from your church family and work family that is helpful. I get the way you feel when you talk about trying to find the words that escape your mind. I do this all of the time I feel so stupid at times when I am setting there talking to someone and I can't find the word I am trying to express. I have talked to my doctor about this he doesn't seem to be worried about it. I am it drives me mad as well. I also understand how you feel about cleaning the house when I clean the house or cut the yard or whatever it is I do I feel drained of a the life in me as well. I was diagnosed with Lupus at the age of 12 I am now 42 it does get better you learn what your body needs over time. I dont work I have a wonderful husband that takes really good care of my needs. I have been sick for a while now and doctors can't seem to know or care for what they can see and for what I tell them is going on with me. See I have the support of my family but not my doctor. I feel alone because there are only a few rhumys in my neck of the woods so I am stuck with what I got. Michelle I hope you find peace within you and all will be better.Just keep the faith in God that he walks with you on your journey and when it is really tough and you cant walk he carries you though. That's why you are still doing the things you can do he is with you always. We are some of your Lupus support and will always be here to listen and give some advice. I will pray for you Michelle and for the rest of your family.
You are in my prayers
Thanks guys for taking the time to read and respond. I just try to keep telling myself one foot in front of the other!!
My precious child of God. Anyone having experienced the tragidies that you have, with or without Lupus would be struggling with grief. Grief is a very heavy load. I don’t know how you feel about seeing a doctor who could prescribe anti-depressants and/or anxiety meds. I believe you require some medication, in addition to the support you receive from your family and friends.
Unfortunately there is no magic pill to relieve the pain of grief, the only way through it, is to go through it. Be good to yourself, rest when you need to, talk when you need too, and ask for help, whenever you need it. Lean on your family, friends and faith. I pray in time, your losses will not be on your mind 100% of the day! but will begin to diminish. The loss never goes away, but you will learn how better to cope. God bless you. Barbara
Thank you Nan for your kind words. I have the Fibro as well, sometimes I just get so overwhelmed that I forget everything. I knew that I could not possibly be the only one out there that feels this way. I appreciate all the kindness and feed back.
MichelleL.......I can't even find the words to tell you how sad I feel for all your grief....you need to find a good grief counselor to help you, even though you feel like some of the counseling didn't help you. Try to find another counselor. It's good to know you have a strong church family that is faith based that can help you. I agree with some of the support group folks that you need to talk to your doctor about getting some meds. Never go in the sun...it's our enemy. If work gets too stressful for you, and you can afford it, maybe see about working part-time. Pace yourself at home...see if you can get someone to help with the housework. Rest as much as you can. Lupus,Sjogren's, etc. is hard enough to deal with, without all the other stresses in your life. My heart goes out to you for your grief. Pray for strength, to see you through each day. If you have some time, find a hobby or craft you might like to keep your mind busy. The best of luck to you. You are in my prayers. Stay strong, and feel better.
So sorry, nothing is more complicated and difficult to get thru then grief, and it doesn't help dealing with lupus. All I can say is don't give up. Check about grief support groups in your area, they may help some and you could get understanding support. Love you, hugs and prayers.
Hello Michelle L, when grief, stress, loneliness and the many other problems that life seems to bring in this world I let go and let God, I also lost my mother in 2007 and watching her suffer from cancer and not being able to do anything to help her was the worst experience I have ever in my entire life been through, and then 3 years later I lost my pet baby and not having any children of my own he was it for me, he was my baby and I was so devastated that you would've thought that I gave birth to him, then in 2012 I had a retinal detachment and I was so scared of the unknown like will I be able to still work, drive, and do the things I use to do when I had 2 eyes that it seemed as though I lost my joy, and I didn't even recognize myself I was so depressed and I had to pray constantly through each of these situations for Jehovah to give me the strength to get through each one of them and to please give me my joy back, and the more I prayed I noticed that God was restoring me to the me I use to be and that is the only way I have made it through those situations and the many other trials and tribulations I have gone through. My thoughts and prayers are with you and my advice to you is to let go and let God! he is the answer.
Thank you all for your feed back. I honestly am glad that I do have this group to share feelings with. My family, friends, and church family are wonderful, but unless someone is dealing with the same kind of situation as you they do not understand. I am still working a very high stress job. I try to not let it get to me, but sometimes the stress causes flares.
Hi there you have been through so much and Im sorry to hear about all your family who has passed away. I can only share with you how stress and my mother passing affected me. I lost it,Im the only child and the pressure and I had to make it happen. I had to trust God. After every thing was over and I thought the stress gone it hit my body. I ended it the ER I had pain all over, I went home and from then on I had to take it minute by minute and now Im on day to day. Im praying for you and It does get better. Be blessed Godsgirl66
Dear Michelle,
You are probably the strongest person I know after having lost so much you are still standing and surviving your disease you are amazing. I don’t even have the words to describe how incredible you are to still work and going on with your life all I can think of is God is by your side and your faith will help you to continue on. My prayers are with you your parents, brother and your grandchild most importantly you to help you get thru everyday god bless you and stay strong we are all here for you.
Mary,
You post means so much to me. Tomorrow will mark 7 months to the day that I lost my granddaughter, then the next day is the year anniversary that I lost my brother, which is also my late mother's birthday. The last couple of weeks have been really stressful and hard. I am having panic attacks at night. I went to see my PCP, my husband also went with me. I think he has a hard time understanding Lupus. Anyway the doc thinks that I need to be out of work for a few weeks to deal with the stress. I feel like I am letting my husband down and I feel like he is mad at me. I ask him and he says no, but it's the feeling I get. I work in health care and I regularly see patients come in our office that are on disability, and I get so mad, because you can see they don't need it, and I think to myself here I am feeling like crap and this Joker is getting this. Anyway, I am way off subject and venting, but your post really meant a lot to me.
Mary said:
Dear Michelle,
You are probably the strongest person I know after having lost so much you are still standing and surviving your disease you are amazing. I don't even have the words to describe how incredible you are to still work and going on with your life all I can think of is God is by your side and your faith will help you to continue on. My prayers are with you your parents, brother and your grandchild most importantly you to help you get thru everyday god bless you and stay strong we are all here for you.