Hi!,I couldn’t have said that much better-tell the Truth!!..Beverly L.
fearful said:
I was diagnosed with lupus this year i am a 61 year old youthful mother and grandmother who never thought i wiould have a chronic illness. Oh I forgot to mention i am also a certified drug and alcohol counselor and most of my patients have depression anxiety and a host off chronic illnesses. In the beginning i felt betrayed by my body and i also was reluctant to take medication however i looked at my children and thought i dont have the right to not be there for them just because i cantm accept my illnesses. I also realized that the first thing i do with my patients is to make sure their mental health status is stable or there is no possible chance for recovery. So i follow my medication regiment and i have been back to work after having 3 major surgeries despite the diagnosis for lupus oh yeah i forgot to mention i also have gout. who would have thought (smile). I’ve always been told i do things in a big way. It must be true If i can do it i’m sure u can too
Ill share something with you that my doctor told me. I was sent from the local hospital to a larger hospital because I became to ill for the small hospital here. There they decided that since they couldnt find anything that I had conversion disorder and sent in a physiologist. She told me i didnt have conversion disorder but anxiety. after being released we went back to my local doctor and he was so outraged at the statement. He said what 19yr old or anyone at any age not have anxiety from being so sick! I am so with you about the drugs I was one who would rarely take ibuprofen for my headaches etc and now im on so many different pills! I have hard days where it really hits me and I dont want to be around anyone or deal with anything. And days where I accept the changes and my "new" life. I just try and remind myself of what I can still do. My mom always tells me its ok to cry and feel sorry for yourself once in a while and then move on. Dont let anyone tell you its not. I will start crying and be feeling down and I'll say to her im sorry for being a cry baby and shes always tells me its ok. I love her and all her support. Its such a hard thing to go through.... One thing I do to keep me from going crazy or sad about dealing with this is joke about some of the things. It always seems to help me get through the hard days. Wish you all the best as you try and figure out what is best for you! :) Hope you have a great week!
Hi!, I can relate you on this! It is soooooo Hard at many times to keep the tears back!! Crying really good for the Strength that is waiting to come out! But do exactly what is needed for you to come to Grips of this Living with Lupus stuff-smile. Keep your head up and cry if that is what work for you, take care , Remember everything will be fine…Beverly L.
Louters said:
Ill share something with you that my doctor told me. I was sent from the local hospital to a larger hospital because I became to ill for the small hospital here. There they decided that since they couldnt find anything that I had conversion disorder and sent in a physiologist. She told me i didnt have conversion disorder but anxiety. after being released we went back to my local doctor and he was so outraged at the statement. He said what 19yr old or anyone at any age not have anxiety from being so sick! I am so with you about the drugs I was one who would rarely take ibuprofen for my headaches etc and now im on so many different pills! I have hard days where it really hits me and I dont want to be around anyone or deal with anything. And days where I accept the changes and my “new” life. I just try and remind myself of what I can still do. My mom always tells me its ok to cry and feel sorry for yourself once in a while and then move on. Dont let anyone tell you its not. I will start crying and be feeling down and I’ll say to her im sorry for being a cry baby and shes always tells me its ok. I love her and all her support. Its such a hard thing to go through… One thing I do to keep me from going crazy or sad about dealing with this is joke about some of the things. It always seems to help me get through the hard days. Wish you all the best as you try and figure out what is best for you! Hope you have a great week!
Thank you for giving me permission to cry. Sometimes I forget. Being a mom and a daughter I always try to hold it together. Mainly for my kid. But it’s 2:30 am and I can let go. Thank you. I needed to let a tear to fall.
I take the medication because it works for me and it helps me cope not only that I am a alcohol and substance abuse counselor who suggest my patients take their meds because it stabilizes there life and assits them with daily stressors I’ve got to be abke to do what I teach it’s really working for me youll get thru it goo ahead and cry crying is like taking yur soul to the launderette keep ur head up
I’m 72 and have had Lupus for decades, but was just diagnosed finally in October! I have really bad CNS with being in hospital last summer with intractable seizures (most were not epilepsy. . Also have advanced “low pressure” glaucoma which is auto-immune. GI TrCk too. and biopsy Dx of discoid lupus last year. Terrible pain from spinal injury injury last summer when had "drop@epilepsy seizure and aide was out of room when he was supposed to have been able to grab my gait belt to keep me from falling. was transferred to nearby university hospital rather than the interview with hospital safety people they promised. no stress there. In hospital again this July, and ever since, family and friends say I’m different. i feel more whole though so am very confused… and getting very depressed. … really sorry to be a bother to you too.
I’ve fallen in the hospital too due to a nurse walking away when I needed them. I’m sorry you’re going through a rough time. I’ve had a horrible flare since august. 15 hospital visits since then. I wish lupus was the only thing wrong with me. I finally opted to go home with a picc and self infuse my antibiotics. I keep getting secondary infections, and bad ones at that, because of the aggressive treatment to control my degos. Forget about treating the lupus right now. Anyway, I guess I’m just trying to say you’re not alone. And I’m thinking about how grateful I am this thanksgiving. I’m home bound. Can’t leave. But I have my mom. My 3 year old. My older brother from out of town. And I can still wake up every day and find a reason to smile through the pain. If at least for a minute or two.
Everything comes into view when you have a Good cry moment!!! Sound crazy, but hey! It really helps . Letting all things go for a moment to let our mind regroup , feels Really Great…Beverly L.
P.S…Put on your Happy Face after the big cry…S M I L E
Jen said:
Thank you for giving me permission to cry. Sometimes I forget. Being a mom and a daughter I always try to hold it together. Mainly for my kid. But it’s 2:30 am and I can let go. Thank you. I needed to let a tear to fall.
I truly believe you are the only one that can know what is right for you. But if you’re having depression and anxiety and medication helps you feel better so you can function better and not to feel normal because I don’t think anyone with lupus could ever be normal. But just to take the edge off then that benefits you. There’s nothing wrong with medication when it works. I know when I’m having a flare I have high anxiety and when I take a klonopin and my mind can relax a bit so does my body. You take the help you can give yourself. I think you should allow yourself to be ok with that. Good luck!!!
I totally understand where you are coming from. I feel the EXACT SAME WAY! I hate the fact that I have to basically take medication for the rest of my life but if it’s something that is apparently helping you I say take the medication. To be honest I’ve stopped taking all my meds at one point because I thought I was getting better without it but that eventually caused me to flare this year and caused me convert from dermatomyositis to lupus. I totally get it and I feel you should be able to choose what YOU think is best for you and works for you! Stay strong laugh more and you’ll get through this.
I truly believe you are the only one that can know what is right for you. But if you’re having depression and anxiety and medication helps you feel better so you can function better and not to feel normal because I don’t think anyone with lupus could ever be normal. But just to take the edge off then that benefits you. There’s nothing wrong with medication when it works. I know when I’m having a flare I have high anxiety and when I take a klonopin and my mind can relax a bit so does my body. You take the help you can give yourself. I think you should allow yourself to be ok with that. Good luck!!!
I definetly understand I’m an addiction specialist so you’ll understand I don’t want to be dependent but I have to remember what I suggest to my patients. Stop being your own physcian. So I take my meds when I need them and thank god because they allow me to deal with my patients with a grounded spirit and stable mental and emotional mental health status
You're not a pariah if you take antidepressants. This is a formula to tired too. Pace yourself.
I went through a similar experience when I had an emotional collapse in the 80s. I refused meds. And, when I decided to take them they were the wrong meds. I might have gone on like this but they made me feel so bad I weaned myself off of them (thorazine and stelazine both for schizophrenia)--no easy feat--no insurance had to depend on county mental health--yulk. They made me talk real slooow and felt like cotton was in my mouth.
Fortunately I came across a doc who knew what he was doing and got me on the right antidepressant meds which I weaned off of in a year. Really had a good life even when this autoimmune stuff hit in the late 90s.
Around 2005, I really began to flare and had all kinds of symptoms. This wore me down. This time I didn't hesitate to ask for some psychiatric help and counseling which turned out pretty good because I worked for another 7 years. Being strong all the time is not an expectation even of a normal person who doesn't have lupus. Emotional reactions are part of lupus. Our bodies are not acting like they used to. Yeah and sometimes even failing us.
I understand your frustration. We do experience emotional ups and downs. Take what you need in the way of meds. In addition, supplement your plan with gentle yoga, deep breathing and meditation to help you relax and de-stress. Hang in there. You are not alone.
Hope you have a great week!