Just diagnosed...difficulty accepting
A couple of days ago I poste a response to Deana under her thread (really bummed...) I definitely feel that way. To make it easier on everyone (including me, who is very tired this morning and having difficulty with typing!) I am going to copy and paste that message and then add a bit.
"This is very difficult for me because I haven't been able to completely accept it. I was basically on the specialist merry-go-round for a year when I was finally sent to a Rheumatologist. I had all these symptoms, but no one could find anything. I was constantly fatigued, headaches, body aches, major chest pain and shortness of breath, leightheaded, hair falling out, sores, easy bruising. And no one could find anything. I started feeling as if they all thought it was in my head. the only thing that really would come up was a rapid heart rate. Finally my pcp decided to just run a bunch of blood tests and my ANA came back positive. she sent me to a rheumatologist and he did the test over and and it came back higher, yet he thought it was only fibromyalgia but that Lupus could also be it. well, three months later, things were just as bad, or even worse so he put me anti- inflammatories, which weren't helping much. I ened up in the emergency room which finally prompted a diagnosis and now I am taking Plaquenil. But, like Isaid, it is still something difficult for me to accept and I just rebelled against it. I didn't take care of myself, I had very little appetite and skipped some doses. Bad idea. I was in the emergency room again, but they made me feel as if I was just imagining how bad I felt. That night I just broke down and cried. I am very depressed, i feel as if it is not fair and that no one understands, except those who are going through it as well. Some of my friends who know about Lupus, or think they do, just dismiss it, saying things like be thankful it's not cancer. that people with it can still live long normal lives, that it could be worse. And I understand that, but it is insensitive. I know Lupus is an unpredictable illness and you never know when something can happen, even if you are taking care of yourself. and aside from it being so awful physically, it impacts you emotionally. I mean, how can someone be expected to accept and come to terms with having a chronic illness that easily? It just feels so surreal to me. I can say I have it, but it's a foreign concept to me still. I can take all my medication at the right time, and still I feel as if it is not happening to me. I have felt so alone in this, although I know I am not the only one. So, I am hoping the discovery of this forum will help me through this."
Well, last night made things a little worse. I had met this fabulous guy, who seemed so accepting, took care of me in the emergency room, etc. in a nutshell, he was perfect. But I was afraid to get involved with anyone frankly because I am sick. I just felt it wasn't fair and also that in the end they wouldn't be able to handle it. well, lo and behold last night he tells me it has been way too stressful and that I am as high maintenance as his last girlfriend, which was the cause of their relationship to end. But that I have a good reason for being such, yet he feels I was this way before getting sick. well, I guess I am, emotionally at least. But I was up front with him from the beginning. i told him what he was getting into. And after all that, he stayed the night. And we agreed to take it one day at a time. Well, it can be done that way, but knowing how it is affecting him makes me feel even more certain that he or anyone else for that matter, doesn't need to deal with me or what I am going through.
I honestly thought he was the one and now I don't know anymore.
I am so depressed and in need of some support and care.
Does anyone know a good Psychotherapist in DC?
Love, hugs and kisses to all of you,
Bella, I'm sorry you are going through all of this - you are certainly under a lot of stress. It really stinks how much lupus can mess up our lives. I go through a lot of guilt in my relationships since I have gotten sick and worry a lot about people leaving me. So far my husband has been supportive but I keep worrying that one day he will get sick of me being sick and he will be gone. Relationships are complicated enough without being sick.
I'm glad you found this site and you will get a lot of great support here. Hang in there and let us know how you are doing. By the way, finding a good therapist is a great idea. I have been seeing one regularly to help me cope with all the changes in my life since becoming sick. Take care
Hi Bella and welcome to our family.
Lupus is such a misunderstood illness and it affects every part of our bodies, as well as our emotions. The treatment of the illness itself requires high maintenance, so it stands to reason that our emotions are also going to require high maintenance. So, there is nothing wrong with you. What you are feeling is not unusual nor is it irregular.
It takes a very mature, self assured, unselfish, competent, caring person to give us what we need. Unfortunately, those people are few, far and in between. It is they who are lacking - not you!!
There are so many facets of this disease that goes beyond the comprehension of our friends and family, they just don't understand.
I always recommend educating those people who are significant in our lives. Give them books, refer them to web sites, give them pamphlets, booklets, etc. I have found that, once they become educated, they are more likely to be understanding and more able to provide you with the emotional support that you need.
I hope that you are able to find some peace and come to know that you are valuable, you are worthy and you are cared for. We are here to make sure that, at the very least, you know those things!
I wish you the best
Peace and Blessings
I hope things are going better for you by now. You've received some good advice, above, all I can add is another website - there's one called www.butyoudontlooksick.com that has a story - the spoon story - that can help explain lupus to others.
many hugs, welcome to this site filled With friends and those who truly understand.
Thank you, everyone, for all of your support and the wonderful welcome. Since I last posted, things have been better with my guy. He is very caring and eager to know how he may help. He has read about Lupus, talked to my doctors, and has me following strict orders in regards to sleep, nutrition and excercise. I guess he does care. Right now the toughest part, though, is to get him away from the technical stuff and attend a little more to my emotional needs.
On the upside, my older sister came to visit. We hadn't been close since we were children, so it saddens me to think that it took my illness for us to work at getting our relationship back on track.
There are days when I wake up and forget what is going on, and I let it just settle in the back of my mind for a bit...until I am facing the various medication bottles and reality hits. There are also nights when I only dream about my illness, about what could happen and being sick. I wake up crying sometimes and wishing I could talk to someone, but I've found that when I really need to talk, I can't get a hold of anyone.
At this point I can't even say if I have accepted it, but I try. it's a daily struggle that I find hard to even face at times. I try to ignore it, but there will always be something to remind me, such as the constant chest pain, the memory loss, the aching joints. it will always be something.
I probably sound like a very depressed mess, but I guess that is normal with this?
I guess that's my venting for the day.
Hi bella, good to hear back!
Your guy sounds great - it may be hard for him to figure all this out, so dealing with the technical may be his best way of showing you he cares. Give him a bit of time, and realize that the attention to detail is his way of saying "I love you, I want you as healthy as possible."
Take each day as it comes, and welcome each morning. Acceptance isn't a single door that you go through and arrive. It is an ongoing process - a river that we travel each day, changing all the time. If you can find someone to talk to - a counselor, a person at the place you worship if you follow a faith, the Employee Assistance Counselor where you work - please talk to someone. It is a great help. I went many times at first, and still go fairly regularly several years later. Talking to someone who has some professional training can be a wonderful thing. You not only get support, you gain insight.
Hugs, and keep posting - this is a wonderful place where we understand each other!
Hi there! I'm newly diagnosed as well. It sucks! Anyway...you might want to go to a website called InvisibleIllness.com. They talk about dealing with your friends and family. My first dx was fibro and then Lupus. ( I have both) when I had the dx of Fibro everyone thought I was a hypochondriac. Now that I have SLE, suddenly I am "really" sick. The funny thing is that more debilating symptoms come from the Fibro although I do have organ involvement.
Just remember to be patient with those around you, they are learning to deal with it too and are probably feeling a little inept as to how to treat you. Anyone who truly cares about you is going to go through their own grieving process as well. I know it's hard to think about others right now, but my mother was a complete idiot right after I was diagnosed.
After a few fights, I realized that she is just as angry about this as I am. Not everyone is like the mom/friends on tv.
I hope everything works out for you.
Things are just bad to worse
Well, Paul, "my guy", has decided that he has no time or energy for a relationship with me now. It's been about a week now. And what bothered me was that he chose to do it late at night when I was extremely exhausted after a long week at work and having some wonderful chest pains and shortness of breath. So, I am heartbroken. I didn't have the energy to respond to him then, and he knew I didn't. But when I tried talking to him afterwards, he essentially ignored my calls and couldn't even be there for me. In the end I ended up talking to his voicemail and calling him a coward for not being able to face me and allow me to say what I need to say to his face.
I am distraught and then you add work issues to the mix (not enough understanding there either), I am a mess physically as well. I am not sleeping much, my appetite is so bad that I've lost about 5 pounds in the last week (for someone who weighs 110 lbs, that's quite a bit), my chest pain and shortness of breath are so bad that I have wanted to go to the ER a few nights already, but I hate going to the ER because I feel like I might be wasting their time. So, instead I take motrin every few hours to try and control the pain.
I am so worn out emotionally and physically and I am just dragging through the day. And since I can't really afford to lose my job, here I sit, feeling awful and just praying I survive the day without fainting or anything.
And there you go, my venting for the day
Many hugs for both of you, Bella and Tumbleweed!
Bella, if you are having sever chest pains, you will NOT be wasting their time at the ER. That's what they're there for. I'm so sorry your guy has been a skunk - and hope that things will get better there for you as well.
At work - if you're working at least 1,250 hours a year (about 24 hours/week), you've been there over a year and if your employer has more than 50 people working there, you are eligible for FMLA. Ask your doctor if a leave of absence would be helpful. Then talk to Human Resources and get it set up. You can have up to 12 weeks in a 12 month period.
Does your workplace have an Employee Assistance Program? (EAP) If so, call them. Just talk, they can be so helpful. And they're free.
Tumbleweed, welcome to our group. And thanks for the link! Many hugs to you as well.
Please, both of you, keep in touch.