YOU LOOK GOOD TODAY!!! IAM IN BEAUMONT, TEXAS BE BLESSED 😊. FIRST TIME VIEWER
@smilesbehindlupus4978
7 жыл бұрын
Thanks for sharing your story... it's crazy how life events that are very stressful brings on the actual diagnosis
@FrugalisticLupusSister
7 жыл бұрын
+SmilesBehindLupus You are welcome. Stress is not good for anyone.
@jaygirl1148
6 жыл бұрын
You have a comfortable life don't take for granted go out with friends they'll understand
@jerbearlolz
3 жыл бұрын
Thank you for sharing your story. It took me 3 years to get diagnosed, and had many family members and doctors not believe me. By luck and by chance, I was able to see a great rheumatologist from an urgent care referral. She confirmed that I did in fact have Lupus. This disease is life changing and I am only 24 yrs old still in college. I am keeping positive and pushing forward, and I hope they come up with better medication for us in the future. The most powerful thing we have is the belief in ourselves.
@angieskaggs4194
4 жыл бұрын
Omg I am so glad I found your channel. I was diagnosed with Lupus in 2004. When I was in high school I would get dizzy often and passed out on numerous occasions. I never thought anything of it and never told my parents. I would get really tired but my parents just thought it was a normal teenager thing. Then when I graduated from high school I started at the community college that August. I was a full time student and worked part time at McDonald’s. I remember getting a bad headache I couldn’t get rid of and was taking a lot of aspirin cuz that was all we had at work. I got to the point where I was very tired and could stand up without passing out. So I decided to go to the doctor. I took a shower and shaved my legs and headed to urgent care. They did blood tests and found I had no playlets and my red blood cell count was extremely low. Was transferred to the hospital where I was later diagnosed with TTP (thrombotic thrombocytopenia purpura). After three months of plasmapheresis I was in remission. Fast forward 9 years we decided to go off my depo shot and try to have a baby. My dad lives in his childhood home and found some old papers in his attic. I went to go look at them and on my way home I started itching really bad and broke out in hives. I thought it was the dust from the attic on the papers. Took some Benadryl and it wouldn’t go away. Started getting bad joint pain and could barely walk for like two weeks so I decided to go to the doctor. She ran some tests and referred me to a rheumatologist who immediately though Lupus and ran an ANA and prescribed 60mg of prednisone and plaquenil. It worked and I was feeling better within a few days. Sure enough, my ANA came back extremely high and I was officially diagnosed with Lupus. I tapered off prednisone and was doing good but not getting pregnant. A few months later I had my regular three month blood CBC done and my platelet count plummeted. I was told to stop trying to conceive until we could get my counts under control and low and behold I got pregnant. And since then I have continued to have low platelet counts and was diagnosed with secondary ITP. I still to this day struggle with low counts and also have many other Lupus symptoms including photosensitivity and bad headaches. Thank you for sharing your story and I look forward to watching more videos. God bless.
@FrugalisticLupusSister
4 жыл бұрын
Hello! Thank you for sharing your story. Keep fighting!!
@omndi7214
6 жыл бұрын
When i was diagnosed in 2013. My specialist immediately put me on a high dosage of prednisone. Now im off prednisone and currently taking methotrexate and plaquenil. Also, im taking Imuran, i understand the pressures of staying inside because my immune system is suppresed. Stay strong sister!!!
@FrugalisticLupusSister
6 жыл бұрын
Thank you and you take care too.
@augustinegarrett8420
5 жыл бұрын
Hi Omndi Trou, my doctor suggested to me of taking Imuran. But I'm skeptical of trying it because of the side effects. Do it work for you?
@jeaneneamos2136
3 жыл бұрын
I have been sick every since my school year and day one in out hospital have to kids it very hard hard so many sugary back to back 2009.Told me do exercises and eat fruit and vegetables no meat trying to keep myself together pass out sick stomach.Glad to hear from someone sharing stories about lupus ❤❤❤ warm
@juslove71
6 жыл бұрын
I was diagnosed with lupus August 2014 and I had no signs of it. Well I’ll take that back I did have signs that something was wrong with none of my doctors testing me for lupus. I started having heart complications and doctors told me that I was just having chest wall pain‘s. This went on for several weeks with no relief. However the pain just got worse and the fatigue, anxiety, swelling and headaches got more intense! I was admitted into the hospital on August 15, 2014 SP 27 days in hospital. During this time in the hospital I had two near death experiences which cause me to be placed in ICU for one week at a time. This was the scariest time of my life because I have never been so close to death before. I literally saw all the WhiteLight and I prayed at that moment and asked God to allow me the opportunity to see my son grown up into a man that was able to take care of himself and his family. Once I was released I stayed home one week and returned back to the hospital and was there for two weeks and this pattern went on for the last 3 1/2+ years. The longest I’ve been out of the hospital is three months. And the longest amount of time I spent in the hospital in one stretch is 30 days. I’ve had at least 5 to 6 stents implanted in my heart and i’ve had 3 to 4 blood transfusions. At this point I take about 34 to 38 pills a day just to function and stay alive. I take 30 mg of morphine every 3 to 4 hours and I take 120 mg of morphine twice a day just to be able to have a pain level of at least a seven and six if I’m lucky. I’ve had the ketamine and it worked for about a week or two, but it only bought my pain level from a 10 to 8. I’m back in horrible pain again pain again now my doctor wants me to go for the ketamine booster. I’m going to go for the booster to see what it does in hopes that it will give me the success of other people have had, however from my cardiologist and rheumatologist both have said I that I am that two/three percent that don’t have great success with the treatments. Oh I forgot to mention I believe my mother had lupus and she died at 45 long cancer due to secondhand smoke however the symptoms that she displayed Wellelein lead me to believe she had lupus. Examples of swelling, butterfly rash hair falling out, headaches, and constant body pain. Also my grandmother died when my mother was fine and she was 30 years old. Based on stories I’ve been told she had hair loss, memory loss, swelling, fatigue, severe Depression. Many people thought that she may have been mentally ill or slow because of her ability to not remember things all the time. Keep in mind my grandmother was born around 1911 so I don’t believe they tested for lupus back then.
@FrugalisticLupusSister
6 жыл бұрын
Hey Oh my luppie sister! I hope you feel better soon. You have so much going on my friend and I’m sending prayers your way. Lupus history runs deep in my family too. Take good care of yourself.
@juslove71
6 жыл бұрын
Frugalistic Lupus Sister I’m trying to take care of myself, I have a doctors appointment this Wednesday and I’m hoping he can do something about the flare that I’m going through right now.
@nicolewashington6718
6 жыл бұрын
Hi I’m one of your new subscribers and first thing first is God be the glory because lupus definitely hasn’t stole your beauty , THANK GOD!! I love to hear your story because today you really confirmed something that I’ve been considering doing for a while, especially now, and that is to find another Rheumotologists for my daughter. It’s funny because her doctor is just as old as the doctor you once had. He never could give a straight or even a good guess on any of the lupus systems or meds he was prescribing. I had to go off on him one visit because I was just fed up and felt very disrespected by his nonchalant answers and seemly not caring attitude towards me and my daughter. He just would want to take all these pics of her body where the lupus had attacked her skin. I thought that maybe him taking these pics that by the next visit he would have better answers for me instead of ,” I don’t know.” But, of course, he never did have any proper solutions or answers for me and therefore I was very agitated. Now she’s extremely ill because of all the trial & error meds he was giving her at almost every visit. She’s been in ICU now a week and two days and she’s finally trying to respond to my touches and voice. Once again I thank you for your videos because you mentioned water and she doesn’t drink as much as she should but she doesn’t drink sodas either. While she’s still in there she’s not producing fluid so I thought it could maybe come from not having enough water in her body, maybe. Well please keep doing what your doing because their are people like me that truly needs to hear other people’s journey. You’ve been a God sent to me and I appreciate your honesty and just rawness to describing the truth about all the things your experiencing. 😊🙏🏽
@FrugalisticLupusSister
6 жыл бұрын
I pray that she makes a full recovery. Lupus does so much damage to our bodies. It so frustrating thinking about it because I used to be a person who was ready to go hang with my family at anytime now I have to take a break often. Stay strong and seek a second opinion.
@lisarichard5051
5 жыл бұрын
Hi how are you doin? I came across your channel and immediately watch this video and went ahead and subscribed! Im too a lupus patient! Got diagnosed in 2013. Its a struggle for me on a daily basis! Im 47 yrs old trying to make it out there! I have my days and DAYS if you know what i mean... Im glad i came across your channel its good to relate with someone who's goin through the same thing.. God gives us the strength to move forward... Ill keep watching and you have yourself a beautiful day 😊😊
@FrugalisticLupusSister
5 жыл бұрын
Hello there!!! Thank you so much 💜. Keep fighting and do what you have to do to make the best of the situation. Lupus will not win🙌🏾
@xxprinnywinnyxx
7 жыл бұрын
Hey frugalistic sister, I was recently diagnosed with Lupus. May 2017 to be exact. I was and still feel "all over the place". I believe my first initial flare was due to my father passing away. It's soothing to hear you also thought negatively about this diease at first. Because I too suffered with it, thinking of dying, leaving my daughter "who suffers from sickle cell anaemia" by herself, feeling alone, feeling scared to be at home by myself just in case something bad happened to me. Two months on and I am slowly coming to terms with my condition. My blood results have come back and my rheumatologist is very happy. I would love to speak with you 1 to 1. So I can get a deeper understanding about this condition and how to live better with it. Please keep doing what your doing because you really are helping me get through. I look forward to your uploads. Peace love and light to you. Keep strong and God bless xx
@FrugalisticLupusSister
7 жыл бұрын
+maiyah posh keep pushing through because I know it gets hard. I struggled in the beginning I thought I was losing my mind. Please stay stress free. Sure we can talk one to oneThank you so much
@FrugalisticLupusSister
7 жыл бұрын
+maiyah posh if you like to talk to me my number is 7705429529
@jaygirl1148
6 жыл бұрын
maiyah posh please don't think negative.
@FrugalisticLupusSister
6 жыл бұрын
I’m doing good. Trying to maintain 💜💜
@FrugalisticLupusSister
6 жыл бұрын
My joints more so than anything. I still have some fluid around my heart.
@jaygirl1148
6 жыл бұрын
Love your hair. Mine is falling out 🙍👀
@FrugalisticLupusSister
6 жыл бұрын
That’s what I have fear of😞
@jaygirl1148
6 жыл бұрын
Frugalistic Lupus Sister fear hair loss???? It grows back. I fear my heart stopping 💯
@FrugalisticLupusSister
6 жыл бұрын
Now that’s true 😬
@evelinadalton8729
2 жыл бұрын
I was a sickly child to this day
@evelinadalton8729
2 жыл бұрын
I was diagnosed with lupus last year
@gingerbray7744
7 жыл бұрын
Hi I'm new to this I'm just listening to your symptoms that you get during a lupus flare. I was diagnosed with lupus almost five years ago and I have just gotten worse I just saw a new specialist and all my blood tests are way off the chart they're all testing a strong positive so that's pretty depressing. My symptoms I get all the time with this lupus is extreme body heat , does anyone else? And I get chills I feel like my body is on fire mostly from my waist up and I'm just drenched in sweat and of course the extreme fatigue and pain I ache all the time and have gained weight. I also suffer from severe nausea and vomiting I don't think I ever thrown up so much in my life then I have the last couple years!
@FrugalisticLupusSister
7 жыл бұрын
+Ginger Bray Hello Ginger Sorry it took long to reply back I was on a mini vacation but I can so relate to you. I had body heat issue last night but I thought it was due to me having a hysterectomy and hot flashes. However, fatigue and achy joints are not fun. I have times when I'm feeling well and then I get sick. I just hate lupus
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