Greetings and salutations and all that rot. I was just diagnosed with Lupus last week. It through me for a loop at first. My thoughts were all mixed up and feeling like "How much more can I take?" Then I was almost relieved because it explained so much to me. Like why I was so exhausted and having so much trouble just climbing out of bed and recovering.
In 2012 I spent 8 months in the hospital and rehabs recovering from septic shock brought on by a streptococcus B infection in my right ankle and left breast. I ended up loosing my right foot just above the ankle and most of my left breast. At first I was doing great adapting to the prosthesis and moving around but then I started having more and more pain and my joints were hurting. I was feeling weak and then I had a bad fall trying to get out of bed. I have a wonderful doctor that spends a lot of time listening to his patients and after talking to me he ran a big battery of tests. When I went in last week he spent 2 and a half hours talking with me and explaining why he felt that I had Lupus. ( every test that might indicate Lupus came back positive) He had already researched and found a specialist that he feels is a good fit for me to see. As soon as my daughter gets her new schedule from her new job I'll be making an appointment with him.
Who am I? I live in Colorado with my very loving and supportive husband of 36 years. I have 2 natural sons and so 2 "adopted" daughters and another "adopted son", I live in a suburb of Denver, Colorado, very close to where I grew up. I have lived a few other places but I always return to Colorado. My training is in psychology but I have worked as a first grade teacher, a political speech writer, and taught abnormal psychology at a college near here. I had my own practice for adolescents but had to give it up when I developed Reflex Sympathetic Dystrophy. Recently I have volunteered as a phone crises counsellor. I just had my 61 birthday but in my mind I'm dyslexic so I think I'm closer to 16 ( the age of my oldest grandson ). I'm a proud grandmother of 5 boys, and 1 very beautiful young lady.
I'm very thankful for this forum. It has already helped me feel better about facing this new experience I'm embarking on. I'm sure that I'll have a lot of questions as I go along and I hope to also be a help to others here. May God bless you all.
So nice to meet you Doggie! I lived in Denver for a couple of years, I loved the beauty of Colorado. Thanks for introducing yourself, I am happy to know you. Hugs.
Welcome to the community!! And that is definitely quite a story that you have there and you've definitely been through a lot. So crazy though how once we have a diagnosis we finally recognize how all of the symptoms we've experienced all of a sudden "make sense", right? But again, welcome to the community and so glad you've found it helpful thus far-- definitely great people up here; very supportive and helpful.
ps, happy belated birthday!
I am so sorry to hear of what you have been going through. But you are lucky it seems in your doctor. That's worth more than gold. I had my first flare at 17 and was actually diagnosed at 29. The best advice I could give would be to keep a record or all your daily symptoms and what you did to treat them even if it is just an asprin for a headache I have found everything is related. Either it is the Lupus or the medications used to treat the disease and symptoms. With that being said developing a network of people to talk to that really understands is as they say priceless. I wish you nothing but health, Good Luck God Bless Julie
welcome to the forum. I was your age a few years ago when I was diagnosed. Thank you for your story.
Hi Doggie and welcome, it's a bit if a double edged sward, but I remember the relief when diagnosed, so much better than having people think here's a hypochondriac. This site has done wonders for me, I live in New Zealand, most people here have never heard of Lupus or if they have they know nothing about it and I have been very alone
I am a bit different to most of the members because I have refused all the barrage of meds that have been aimed at me over the years, I have an aversion to taking meds that have side effects, opting to live the life of a vampire staying out of the sun.
I seldom comment, as I know little about the meds, never having them myself, but there are many who use the sight that do and you will find them very helpful with their experiences. Wishing you all the best wishes.
There is that word "hypochondriac". I was so afraid of being labeled one that I didn't even tell the doctor all the problems I was having. I guess that's one of the reasons why it took so long to get a diagnosis.
Katerine I think that could be true for a lot of us, so many symptoms seem impossible to be caused by one thing, but we know they are.
Katherine Duchette said:
There is that word "hypochondriac". I was so afraid of being labeled one that I didn't even tell the doctor all the problems I was having. I guess that's one of the reasons why it took so long to get a diagnosis.
god bless you sweetie, you seem like you have a full and wonderful life,..i have had lupus for 20 yrs now,,,,and i too have full life,....i really think that makes a big difference when you have lupus, i think you are doing great, just reading your letter made me feel so good and it is so positve.....god bless you and your wonderful family.....catspaw1955
I’ve been diagnosef for only a couple months … It gets better I promise, but u are in a place where ur thankful that you finally have an answer that you finally have a reason and I don’t know I can only speak for myself but I could finally be honest about my illness to people out loud. They all knew that I didn’t feel good or I was beginning to have a lot of physical elements and surgeries but I never told one person not even my mother, and myself, about how bad it really is. That’s w physical elements and surgeries but I never told one person not even my mother, and myself, about how bad it really is. by when u find a great group I think it is very helpful to the spirit and the heart and the mind. We are forever changed…this is our journey.
Thank you all for the warm welcome. I'm off to do some more exploration out this wonderful site. I'll be posting later as I learn and experience more I'm sure.
Welcome, Doggie.:)
catspaw1955 said:
god bless you sweetie, you seem like you have a full and wonderful life,..i have had lupus for 20 yrs now,,,,and i too have full life,....i really think that makes a big difference when you have lupus, i think you are doing great, just reading your letter made me feel so good and it is so positve.....god bless you and your wonderful family.....catspaw1955
Jan king said:
catspaw1955 said:god bless you sweetie, you seem like you have a full and wonderful life,..i have had lupus for 20 yrs now,,,,and i too have full life,....i really think that makes a big difference when you have lupus, i think you are doing great, just reading your letter made me feel so good and it is so positve.....god bless you and your wonderful family.....catspaw1955
I’m new at this so please excuse my mistakes. I so want to hear from you encouraging words and any suggestions for getting thru the days of pain. I was diagnosed in October 14 but had a hard time finding
A dr. That cared. I am on the injections and 2 meds for 2 months but no relief. Do I give up on this treatment. Would love to hear what has helped you
I am just very glad you survived from septic shock....i gone through it few times and it can be very trying especially when i know it was downfall of my brother's death who did have autoimmune diseases all his life...back in 50's through 80's when he died only at age 34. They really did not have clue about how to treat him.
But it sounds like overall you are having a wonderful life!! I hope that the lupus does not affect your life greatly but in minor way. You been through so much...well i am sure you get it that you will need time to accept all you been through plus grieve the losses.
welcome!!
Thank you siskiyousis,
I am having a rough time emotionally. I guess that I am tired of adapting and while so much is positive and encouraging here there is still that one thing that I'm tired of doing. I'm sure that once I get through this bad flare I'll be more positive about the adapting. I was doing so well at adapting to my prosthesis and then when this flare came up it set me back to worse than I was when I first got it. I'm having to use the walker to walk anywhere and I was off it within a week of getting the prosthesis and just using a cane. The only time I used the wheelchair was when I got out of bed or right before going to bed unless it was going to be a long day like going to the zoo with my grandkids. Now I spend most of my time in it. I'm hoping that this too shall pass and I'll be back walking around soon. I worry about my husband having to lift the chair into the back of the car every time we go somewhere. He isn't as young as he once was either.
We all have different ways of handling things. For !me, last year my gastroparisis was so bad I was losing weight rapidly, daily. Living out of state was not helping for this left everything on my elderly husband's shoulders. I called my sons and they moved us 1400 miles. Today we live with one of the sons. This in itself has helped tremendously. Having readily help available when needed is heaven sent.
My son is in the middle of remodelling or basement and then my daughter will most likely be moving in. I am a bit worried about her moving in though. She is the type that would put her life on hold just to be sure I'm taken care of. I feel she has already put her life on hold enough for her grandmother.
Hi Doggie and welcome! I am 48 and also live in the suburbs of Colorado. I am glad you found this site. I hope you are able to find answers to some of your questions here. I look forward to getting to know you.
Take care and have a great day!
Elfin66