I am so Grateful for my diagnosis. The more that I read and learn, I realize that my mother probably had lupus which took her from me way too early. I can remember saying to her once, "but you're always sick." I mourn the fact that I can't talk to her and let her know that I now understand what she was going through.
My mother never told us how bad her heart was, she always tried to protect us. I want to be able to educate my children as a legacy to my mother.
Trisha
Hi Trisha,
Sorry to hear your mom died with illness and some parent's do try and hide issues....eductaing you children is the best thing to do.
I inherited my Lupus of my parent/s but when i come to realize i'd say both as my mom's face was always red plus carried the red V pigmentation marking on her neck...my youngest sister as these and she as lupus besides me and my moms head had blood lesions on it besides having bad diabetes and suffered with her heart plus had severe RA and my dad had skin trouble, me and my sister have that, he had strokes which i've had, he also had osteo besides spondylosis and me and my sisters have that and he finally died with cancer in the lung and liver.
When finding out these issues it learns us alot for the next generation that could pass it on, where you have children i don't but my youngest sister as a son 22 and she won't tell him nothing as she wants himto live is life...i find that deeply wrong.
((My heart goes out to you Trisha)) Love Terri xxx
JC....great answer because years back our parents besides alot of Doctor's you saw would'nt have known about Lupus just would have put up with ailments it gave....such as an heart attack was an heart attack then.
John "JC" Colyer said:
Mine new but didn't know what it meant she only had Drs to rely on, I empathize with not being educated , nobody knew the struggle!
Unfortunately, I share the same scenario. My poor mother suffered my whole life with one medical crisis after another. The doctors always blamed her nerves. Family and friends would call her a hypochondriac. As an innocent child I would ask, she can make all these physical ailments manifest just from her mind?? How come nobody else did. There was never an answer, just harsh judgment of her. I took care of my mother for the last twenty five yrs of her life. Mom never got the actual diagnosis before she died. I never knew what lupus or Sjogrens were until my own diagnosis. I also miss my mom ever day and talk to her about how sorry I am that we never got these answers together while she was here. Even though I was very good to my mother, I will always here the echo of my own voice telling my mother to try harder to be well. Now I feel like I am fighting for my life for the both of us. I miss you every day momma.
My mom wasn't diagnosed with lupus. I'm the first in my family to have that honor.
My mom did suffer from chronic pain and spinal issues resulting from an accident at work. My mom was a teacher's assistant in a Kindergarten special needs class. One of her students was upset that she was helping another and hit her across the back while she was bent over. She struggled to continue to work despite the pain because SS wouldn't approve her disability and her job gave her the run around regarding her workman's comp. The stress activated her diabetes. She was in and out the hospital while I was in college struggling with my own pain (that I had no idea what was causing it).
After I graduated, I came home to help my mom. Her doctor pulled me aside during a hospital visit and told me to sign my mother out and take her to a hospital in NYC because the attending doctor put that she was "just seeking medication" on her record. I immediately got my mom out of that hospital and took her straight to the Columbia Presbyterian ER.
The doctors there finally discovered that she had an untreated bone infection in her spine and that she needed surgery to clean it out and put in rods to support her spine. Things were okay for a little while after that. After she recovered and returned to work, I moved to upstate NY to try to find work (and selfishly, I also just needed a break from being my mom's primary caretaker. My brother had just moved back home after a fire at his house). Then, she started going in and out the hospital again. Her legs would just stop working for a week. In all this time the pain never went away. Finally, her heart just gave out.
I miss my mom every day. I remember whenever the pain was so unbearable that all she could do is sit in bed and cry, she would hold me and say "I hope you never have to go through anything like this." There are a lot of things that I never really understood about my mom's experience until I started going through my own. I really appreciate the time we had together -- the walks in the park, the afternoons watching terrible movies on cable, everything.
Things are hard emotionally with my grandma. She had to bury her only child and now she's afraid of losing her only grand-daughter. I don't tell her how bad I feel and only call her on "good days" if I can. It took a long time (and a cat) for her to get out of her depression after losing my mom.
-Shu
My heart hurts for my friends who had to go through all this at such tender ages. I'm now wondering if that's why my grandmother died early and why my mother was the way she was. I'm feeling guilty for not being more understanding, and for feeling sorry for myself. At least I have a diagnosis which is more than what they had.
,I’ve read a study that said only a small percentage (like 5 percent) of parent child lupus diagnosis but from reading our stories it’s probably much higher due to lack of proper diagnosis of lupus etc…By the time our family members were all really sick, all the drs. Would focus on treatment of other known diseases like diabetes, heart disease, strokes, kidney, cancers, thyroid, depression, anxiety (and that is just my moms list if problems she suffered thru…(insert laugh).
I am so grateful for technology to allow us lucky few the ability to share our stories of living with lupus. Reading your thoughts really help me cope with the isolation that I’ve imposed on my life to be able to be stress free. Peace, quiet, and solitude are essential for my health. I pray that our thoughts and words here can someday help forward our cause so other people can find answers sooner.
Oh JC,
I am sorry to hear that...some things which are said and looked upon seem hard to dismiss.
"Hugs JC" xx
John "JC" Colyer said:
I had a time in my early 20's I came home in the afternoon and my mother was sleeping on the couch and didn't get up. I told her she wasn't trying hard enough and gave up, I still feel bad about how I reacted.
Incredible post.
Dear JC,
Please forgive yourself, you know your Mom forgave you. My heart goes out to all of you. SK
John "JC" Colyer said:
I had a time in my early 20's I came home in the afternoon and my mother was sleeping on the couch and didn't get up. I told her she wasn't trying hard enough and gave up, I still feel bad about how I reacted.
I think the best thing we can do for our mothers, is forgive ourselves first. I remember the last time I saw her, she was in the hospital and I had been there every day. It was a Wednesday, and I stopped by after work as I had all week. She was sleeping when I got there, so I just let her sleep and watched her. She finally woke up and smiled her smile as she was so happy to see me. We visited for awhile, and she told me how awful this had been for her. At the end of our visit, we hugged and kissed as always and as I left - she looked at me differently and I lingered for awhile. She knew it would be our last visit, I wish that I had. The next morning, I had just arrived at worked and was walking toward the door when my phone rang and my brother-in-law said come to the hospital, your mother has coded. When I arrived, they took my sister and I into a room and a pastor come in and the doctor told us our mother had died.
I don't recall much of the next days it was all a blur, except that I developed a cough, and it got worse. When I returned to work, I couldn't walk far without stopping to catch my breath. After a week, my dad urged me to go to urgent care and I had my first bout of pneumonia. I had no idea what was ahead of me.
I'm sorry Trisha for your loss. I also never knew all the years of my off and on sickness was caused by lupus. The pieces are starting to fit together, I'm fortunate I never had a bad flare before the age of 38. And I'm fortunate my first flare got diagnosed within 3 months. Unfortunate that my kidneys were attacked in the same time span though.
sunrisetrisha said:
I think the best thing we can do for our mothers, is forgive ourselves first. I remember the last time I saw her, she was in the hospital and I had been there every day. It was a Wednesday, and I stopped by after work as I had all week. She was sleeping when I got there, so I just let her sleep and watched her. She finally woke up and smiled her smile as she was so happy to see me. We visited for awhile, and she told me how awful this had been for her. At the end of our visit, we hugged and kissed as always and as I left - she looked at me differently and I lingered for awhile. She knew it would be our last visit, I wish that I had. The next morning, I had just arrived at worked and was walking toward the door when my phone rang and my brother-in-law said come to the hospital, your mother has coded. When I arrived, they took my sister and I into a room and a pastor come in and the doctor told us our mother had died.
I don't recall much of the next days it was all a blur, except that I developed a cough, and it got worse. When I returned to work, I couldn't walk far without stopping to catch my breath. After a week, my dad urged me to go to urgent care and I had my first bout of pneumonia. I had no idea what was ahead of me.
Your sounds a lot mines, stress seems to activate this disorder. After i was dx started wondering if was lupus and not hypothyroid that though she had. I still miss her much, I to remember that last day we spent togather, she was trying to say good-by but emotionally i was ready to hear it. She said it was alright. She passed in her sleep that night. I've always regreted not letting her speak her peace.Asia64
aisa64 said:
sunrisetrisha said:I think the best thing we can do for our mothers, is forgive ourselves first. I remember the last time I saw her, she was in the hospital and I had been there every day. It was a Wednesday, and I stopped by after work as I had all week. She was sleeping when I got there, so I just let her sleep and watched her. She finally woke up and smiled her smile as she was so happy to see me. We visited for awhile, and she told me how awful this had been for her. At the end of our visit, we hugged and kissed as always and as I left - she looked at me differently and I lingered for awhile. She knew it would be our last visit, I wish that I had. The next morning, I had just arrived at worked and was walking toward the door when my phone rang and my brother-in-law said come to the hospital, your mother has coded. When I arrived, they took my sister and I into a room and a pastor come in and the doctor told us our mother had died.
I don't recall much of the next days it was all a blur, except that I developed a cough, and it got worse. When I returned to work, I couldn't walk far without stopping to catch my breath. After a week, my dad urged me to go to urgent care and I had my first bout of pneumonia. I had no idea what was ahead of me.
Thank Goodness our generations are a little more aware regarding Lupus. However, what about the children that did not know one of there parents....now thats rough...then its a guessing game, I always say listen to your body it tells you everything you need to know ...I knew I had Lupus in 1983 and didnt have a computer then just had to rely on talking to people and reading ....finally met a woman who had about the same symptoms and yep she had Lupus..SLE....and yes ...I have SLE diagnosis in 1985...after having ITP. Be a detective, and share with the family that is if they want to hear....some dont...oh well there loss.
Hope everyone is having a blessed day....
Hello bern,
I am still not sure that I have lupus, am constantly tested for it and for MS. I already have a full diagnisis on three, so don't really care to add to those! lol! I have to say that the symptoms are all so very much alike, the more I research different autoimmune diseases, the more I see the same symptoms over and over, no wonder it can take so long for a diagnosis, especially when the obvious signs of a disease are not present, like the butterfly rash for lupus or the psoriasis for psoriatic arthritis.
There is much wisdom here, you have a good group! We are all so fortunate that we live in a time of great research and good meds, and Ben's friends support!
Wishing you all the best,
SK
JC as you know member's can only say best possible but only the person themselves can either remember what he'd said or dismiss it but forgiving yourself is even better.
John "JC" Colyer said:
I forgive myself but still feel bad knowing what I know now
Hey Tez_20:
I went to the ER yesterday for what they thought was a severe UTI, but later found out that I had contracted Herpes, well I had the shingles a year ago, and I think it is a lupus, but what bothers me is that the Primary Physician, called me a week before my appointment to tell me to not miss the apppointment because we need to discuss my lab work, but she usually calls me over the phone and tells me if I had a UTI and calls me in a prescription, and if she had mayb she it would not had been so bad.
Tez_20 said:
JC....great answer because years back our parents besides alot of Doctor's you saw would'nt have known just would have put up with ailments it gave....such as an was an heart attack then.
John "JC" Colyer said:Mine new but didn't know what it meant she only had Drs to rely on, I empathize with not being educated , nobody knew the struggle!
Hi , sorry about your lose . In time you will heal in the name of Jesus Christ. My grandmother was the same way never wold let anyone know what was hurting her (she didn't ke going to the doctor) , we would have to make her go and get check-ups. Thank GOD , we took her when we did , she had the first stage of colon cancer they removed it before it spread. She past in 2000 , i sometimes wish that she was here, but of course we heal with time. Maybe older people just have this thing about telling someone when they are feeling bad and not going to the doctor , i don't understand , but that's how they are . I also think that more people should get educated about health problems and how to deal with it , exspecially if it is a family member that has an illness. Taking care of them is painful to the heart when you don't really know what to do for them . Keep up the spirit and yes educate your kids and others , talk with you later....Beverly L.
I received an email yesterday on a study about plaquenil and how the study group took it for 3 months and it reduced their cholesterol. I take a generic version, which I pay $5 a month.
$15. Just $15 could have made a difference for my mother. The past is the past, but the gift she gave to my life is priceless. I'm missing my mother so much right now, but loving my children that much more.
Trisha