Hi all …I’m Leslie and I’m 26. I was just diagnosed about a month ago. It seems as though grief is a close friend of mine lately. I lost my dad to suicide 10 months ago, then lost my Grama 6 weeks ago after caring for her for years. My grandpa (whom I was living with and caring for after my dad passed) had two heart attacks and I was running the family businesses. My body had enough, and all of my pain and fatigue I’ve had for 7 years worsened. I began getting migraines and rashes, and could no longer stand being in the sun …which was something that made me SO happy. Now, in addition to grieving my daddy and my grandma, I’m grieving my future. I’m angry, it just doesn’t seem fair that I’ve gone through so much and I’m still going through more. I try so hard to be a good person and it doesn’t seem to matter.
It’s been a horrifying past few weeks as my pain and exhaustion have reached an all time high following my big move to Florida from NY. I live with my mom now and have spent most of my time in bed EXHAUSTED. No one seems to understand. Sorry for the long post, I just needed to vent. Thank you
Hi Leslie,
Im so sorry for all the loses you've had to endure and now having to deal with Lupus.
Im not sure how much help I can be, I was just diagnosed myself last week and going through a lot of the same emotions your going through. I've only been in this group a few days myself and have learned some much from it. I get a true feeling that this is the place where other people really do understand what your going through. Vent all you want, your not alone. (((HUGS)))
and by the way, what part of NY did you move from? Im in Up State NY
Yes, being out in the sun is a real problem for me.
Im originally from Southern California and have always loved being in the sun.
It's very depressing knowing that I have to avoid it now. But at least I have some explanation of some of my flares.
I'm so sorry for all of your losses. We all go through the lupus grief and we're here to help you through all of it... highs, lows, laughs, tears, we're here for it all. For the time being, focus on yourself and getting rest and relaxation. You can't heal emotionally if you're worn out physically. Sending hugs and prayers.
I am also verry sorry for all your losses. An believe me i understand exhaustion it just seem to take you over sometimes. And never stop being a good person, i know it must be hard but my motto is never give up and keepmoving forward. Sending you hugs all the way from Trinidad and tobago hope they reach you. One more thing God always answer prays so always keep him in your heart
I am so sorry for your losses
Rest and find a good Dr their. Wear sunscreen and a hat when your out. I will be thinking of you.
Sooo sorry for your losses. It is really difficult to cope with grieving for you family and for your life. Please take time to grieve your loved ones. Your life will be very different and will take time to adjust to. I was diagnosed in Nov. 2011. I had no idea it would be such a difficult adjustment. I can say I am so much more appreciative of the little things that really do matter and I take nothing for granted any more.
You will find a balance but remember you must rest when your body tells you to. And the sun…is your enemy. Just being in the sun will make your disease flare and can cause skin rashes, pain and severe fatigue just from UV exposure. Even UV office lighting can bring on a flare in some people. Always wear SPF sunscreen all over your body (including your ears, neck, forehead and hands).
For family understanding, please keep giving them information. No two people with lupus have the same symptoms or out comes so be sure they understand this. Also go to the lupus.org website. It’s loaded with info. There also is a great descriptive writing online. Just search “The Spoon Theory” and read it. It’s great. My family all cried when they read it.
Will say prayers for you. Keep your chin up and know that you will get to a better day.
Hugs-Tina
Oh, Leslie - I wish I were there and could wrap you in a blanket and take care of you. You are so young to be facing the kind of loses you are experiencing. My lupus was diagnosed after a incredible stressful time in my life - full of loss and fear. All I can say to you is rest and grieve. You need to grieve so that it isn't pushed down in your body and then surfaces as another illness. Glad you are here - there is a lot of support and you will find out quickly that you are not alone!
Hi Leslie, I am so sorry! Sometimes life really isn't fair! I second all the great advice here. This has been a great place for me to find support and I'm sure it will be for you, too. Do rest and let yourself grieve. That's the best advice any of us can give. Sending you a big (((hug))).
Leslie,
I also am so sorry that you are having such a difficult time. As many say, things happen in 3's and so on that front that should be enough.
However, grief with lupus is not unusual. Lupus not only affects your body, but your CNS to several degrees which can cause depression. It is definitely something that needs to be addressed with your doctor sooner rather than later. Although there aren't a ton of medications out there for lupus, many that are prescribed for depression can really help like Cymbalta or Lyrica. Both are used for connective tissue disorders, which many times go hand and hand with lupus.
Flutter, I know what those first months are like after diagnosis (I was just diagnosed last Nov.) and for all intents and purposes a newly diagnosed "Lupie" is going through the stages of grief and we are grieving for the lost of our old self.
Those first months are an absolute roller-coaster of ups (I am going to beat this and do everything I used to) and downs (I can't do everything I used to).
Not only that but as with Leslie the inability to physically hold a job is another loss (what do you say now when someone asks you what you do?).
And, this IS the place to come where you really will get the support and real answers and understanding. Other sites that I have visited are so dry and boring it's difficult to get anything but the bare bones...like reading a textbook. Here, you will understand the actual effect that lupus has on your everyday life and someone will ALWAYS answer your question.
If you feel like you want to ask a personal question you can PM me or any other moderator and we will answer. As well, there are several tabs at the top that have good information and other sites including one that is just for women's issues.
Don't give up, either of you as the ups will soon surpass the downs. You will start to begin the days with what you CAN do rather than what you can't. You may find that you find new interests that are not as physically draining as the old ones you used to have.
We are here for you, always.
Bigs hugs to both of you!!!
Flutter, I am from San Diego as well so understand that loss. AnneA has certainly posted enough material on the need for Vit D (which we normally get from the sun).
Search for these subjects on the tag lines and you should fine answers for nearly any question you may have.
XXX,
DeAnne
Leslie - that you went to the bookstore, walked with your sister and are planning on a church picnic shows that you are one of the strong ones too! Glad our support is helpful..keep coming back!
YEAH!
Leslie Pezzo said:
Thank you, all of you, for the incredible support, love, advice and prayers! It means so much to know I'm not alone and can lean on others that literally understand my pain. I went to Barnes and Noble today, trying to push myself to get out of the house, but still wanted some alone time. I purchased two books, one is a handbook for grief, including grieving an illness in our own lives. The second was a journal to help me work through grief. I have plans to attend a church picnic with a friend tomorrow, and have planned my outfit to include a big floppy hat :) the church picnic will be on the beach, so I'm making adjustments for my illness, and taking baby steps. I was also able to take a walk with my sister today for 20 minutes and have been successful for two days sticking to an anti inflammatory diet, which seems to be helping a teeny bit.
Just wanted to update and let everyone know how much your posts mean to me! I am praying for all of you and feel so blessed to be thought of and cared for in so many places! You are all incredible, strong people and I am grateful to be going on this (scary!) journey with you.
Leslie, I’m sorry for your pain and loss you are experiencing. I will keep you in prayer durring this difficult time.
~Sonja
Hi, this is the Right Place for it! Smile. So let your hair down and Relax!!! I have been dealing with Lupus for probably all my life and self medicated it myself for a long period of time, until Aug-Dec. 2010. Then Feb. 2011, Lupus was my life problem , but I have Lupus and it don’t have me is something that I say alot , when questions, looks, and whatever the world throws to me about Lupus. Am not saying I don’t have moments, alot of them are in prayer to the one who knows me best, yes Jehovah(god).i keep it moving to the best of my ability, taking control, resting and the big part not stressing!smile What i have learned is Lupus really don’t care about me , so I make it my business to relate with what I can and can’t do-it really help to set a schedule for yourself-don’t over load your days or time. Set a pace and work the routine for a couple of days , see what you can do straight through, time yourself on simple tasks, make notes to remind you of the things you enjoy, also not forgetting there will be noise levels that you can’t handle ,so narrow the people down to a mimmual, oh yeah! Keep a pack or two of post it around write notes to yourself to help when the brain fog kick in-LOL. I hope this don’t scare you, but I didn’t know about this site from the beginning of my Lupus and no one told me anything like this , so as a friend ,am letting you know what can / might happen in the long run-maybe!!! Oh I forgot to say Welcome and hope that you enjoy this site with us who are Living with Lupus…Beverly L.
Hi Leslie ,
Already you have had to deal with so many family losses not to mention that you are dealing with the loss of your health. My heart aches for you and as with the others you are at the right place to vent. Your head is probably spinning with so many emotions, sadness, anger denial, all of the aspects of grief. If you can try to separate the grief. You are grieving for all the natural emotions of losing loved ones and the grief of losing yourself physically and emotionally . I have been through similar situations .i lost my dad to cancer, was diagnosed with lupus and then lost my job. The only way. I could cope was to separate the grief. You come first right now and need to heal yourself. If you are spiritually minded pray to God ,I honestly would not be here without my faith in God. Find someone to talk with, therapy is helpful and by all mean continue to vent on this website. There are a lot of us who are willing to listen and help. No one suffers the exact same way but we we have all experienced grief. Take it one day at a time but right now you take care of you. My prayers are on the way with a great big hug,
E
Hi Leslie. I won’t tell you that I understand (I HATE when people say that to me) but I can definitely relate! I’m so sorry that you are going through this and I have empathy for you. I also have had one major life crisis after another after another. Brief synopsis…multiple surgeries, lost house in hurricane Irene, homeless, daughter hospitalized numerous times for mental health, daughter addicted to heroin, multiple rehabs, had daughter arrested for stealing ALL of my jewelry, hospitalized against her will for more mental health (she has borderline personality disorder), the list goes on. She is clean now and in recovery (Amen!). Stress takes such a major toll on anyone. Having an autoimmune disease just makes it that much more complicated.
You said you moved to Florida, NY…I’m in Rock Tavern. We are 20 minutes away from one another. If you ever want to meet for coffee or something and exchange war stories or help each other just let me know. Where is the family business? What a small world!
Stay strong. Everyone tells me “this too shall pass”.
IM ALSO 26. IM A MOTHER AND WIFE. MY CHILD JUST GOT DIGANOSED WITH AUTISM SPECTRUM DISORDER. IVE BEEN DIAGNOSED FOR 8 YEARS NOW AND I SEE HOW THE DISEASE HAS CHANGED ME. I ALSO HAVE MCTD, FIRBROMYALGIA, LUNG DISEASE AND 2 OTHER DISEASES. I NOW NEED A DOUBLE LUNG TRANSPLANT AND REQUIRE O2. I CANNOT WALK LONG DISTANCES AND NOW HAVE A WALKER. AS FOR PAIN, I USE A FENTENYL PATCH DOUBLED WITH DILLUADID, AND IM STILL IN PAIN. I HAVE A PSYCOLOGIST AND A PYSCIARIST AND TAKE DEPRESSION MEDS BUT THEY DONT WORK. IM PRETTY MUCH BED RIDDEN AS WELL. I ONLY GO TO CHURCH AND TO MY FAMILIES HOMES. I FEEL ALONE SOMETIMES BECAUSE THEY DONT FULY GET HOW THIS DISEASE HAS CHANGED ME- PYSCIALLY, EMOTIONALLY, MENTALLY. THIS DISEASE HAS TRIED TO KILL ME BUT I'M STILL HERE. AS FOR MY FUTURE, I DO BELIEVE THAT I WILL BE HEALED, I JUST WANT TO RUSH AND GET IT OVER WITH. IN THE LAST YEAR I BECAME ANGRY, WHEN I LEARNED I NEEDED A LUNG TRANSPLANT AND NEVER SMOKED! IM GETTING TIRED OF THIS DISEASE. IT AFFECT MY SKIN, JOINTS, MUSCLES, KIDNEYS, HEART AND LUNGS NOT TO MENTION THE DEPRESSION. YOUR JOURNEY WILL BE HARD BUT KNOW THAT YOU CAN FIGHT THE FIGHT!!!