Where are you at

somebody posted something earlier today that got me to thinking, she talked about getting to the point where you mourn for yourself because you are ill. another talked about having lupus for many many years and still cant come to terms with what she can and cant do and it got me to thinking (i know watch out) where are you at with lupus? Well, i am angry, i have gotten a "borderline lupus" diagnosis and fibromyalgia diagnosis and i have been sick for close to 13 years with no answers until now, i am angry that i am not being treated for lupus, i dont want to have lupus, who would, i just want to know what is wrong with me so i can try and get better, im sick and tired of being sick and tired !! Im also angry that for years my family treated me so bad and still do-all i have heard is you need to get up and get going, you have to make energy to have energy, you need to loose weight and that will fix it, you need to get out of bed, your sleeping your life away, you just need to get up and get going and get over it. your too young to be this sick, you dont look sick, (well i do now !!) i am angry that my co-workers were so ugly to me because i was sick all the time i became the joke of the office. i am angry that these people were eventually the ones that made me loose my job, i had to just quit because they were making me sicker with the anxiety and stress. i am angry that my boss was so ugly to me and he and my co-workers made it impossible for me to continue to work. i am angry i cant ride horses or 4 wheelers anymore. i am angry cause i cant work at animal shelter anymore, i am angry i put in a pool last year and i cant lay out anymore like i use to,

well, i guess you can tell im angry and feeling sorry for myself, just had to get that off my chest, feel better already - thx for listening and let me know where your at !!

Kel, I feel your pain. I’m going mentally crazy here too! I’m mad because I have no social life, I can’t drive my children to practice nor attend their games. I love watching my son play baseball but this lupus and sun got me separate.from family and friends, they don’t wanr to come over and sit all the time. I hate when I do go to the drugstore to pick up mu meds and see old fri ends and classmates looking at me with tears in their eyes or that surprised look, asking me what’s Iwrong or what happened??

oh i know too well those looks and i missed a lot of my boys games too and didnt even know why at that time, i just couldnt take the heat and i was just so exhausted, still am, but i would come home from work and just crash, get up, cook supper, clothes, homework and go to bed and do it all over again the next day !

tjmckay said:

Kel, I feel your pain. I'm going mentally crazy here too! I'm mad because I have no social life, I can't drive my children to practice nor attend their games. I love watching my son play baseball but this lupus and sun got me separate.from family and friends, they don't wanr to come over and sit all the time. I hate when I do go to the drugstore to pick up mu meds and see old fri ends and classmates looking at me with tears in their eyes or that surprised look, asking me what's Iwrong or what happened??

A frustrating illness for sure and yes it does make you angry when you have so many losses. Hopefully you can start working towards taking back some of your beloved activities by going on the attack Lupus may make you feel bad but you have to guard against letting it take over your life. Although the fatigue can be overwhelming it is not clear why you can't ride your horse or a 4 wheelr- you may not be able to go out all day like you used to but should be able to pace your activities so you don't have to totally give them up. Do what you can and begin chippin away at the lupus obstacles - I have lupus for the past 45 years with multi system involvement and severe joint damage but managed to ride and compete with my horses until 15 years ago Now I compete with large breed dogs and I still have horses I just added some help for the care of the horses and use a handler to travel with my dogs and I go and watch. I didn't just give up something I loved but found a way that I could still participate. A lot can be said for a positive outlook. Exhausted?? Still get up and at least go to the living room- Pain? Medications, braces, crutches, warm baths all will help. The disease is not going to go away and remains your enemy but maybe you can work towards a truce :>)

Thank you Poobie for your encouragement. I’m 2 months into lupus and I know I’ll get there some day.

i hurt my back really bad in a horse back riding accident and have degenerative disc disease, i currently have 4 bulging disc and sciatica-i have tried to ride but it is just too painful even for a little bit, i lost a really good job last may due to illness and cant afford them anymore, i sold my mares to my cousin so i can go see them. i have 5 dogs, 1 pet possum (long story)1 cat, a parrot, a turtle and fish so that is enuf to keep me busy-animals are my passion all and i still do some wildlife rehab here and there . one of my dogs is 17 and my cat is 18 and i have a dog with a brain and spinal cord tumor we are battling so there is always something going on here!! you are right i need to try and find a little something but i have these mental health issues that are keeping me a prisoner in my own home, thanks for your advice it is some good advise and i am going to see if i can do a little more, i was thinking about driving for meals on wheels, but i dont know what all is involved. oh, by the way i love all dogs but i love large breeds the best-altho i have 2 little ones that i rescued (rescued them all) that are so dear to my heart, i use to raise great danes, love em, such a heart ache (all large breeds) they just dont live long enuf for me, i get so attached. we put a pool in thinking the labs might get in it and swim, lol, they wont even get their feet wet but they will the river. i want a irish wolfhound, we are moving to the appalachian mountains in tennessee in 6 years when husband retires and get a cabin on the lake, gonna get me one then, thanks again, nice to talk to a fellow animal lover !!

poobie said:

A frustrating illness for sure and yes it does make you angry when you have so many losses. Hopefully you can start working towards taking back some of your beloved activities by going on the attack Lupus may make you feel bad but you have to guard against letting it take over your life. Although the fatigue can be overwhelming it is not clear why you can't ride your horse or a 4 wheelr- you may not be able to go out all day like you used to but should be able to pace your activities so you don't have to totally give them up. Do what you can and begin chippin away at the lupus obstacles - I have lupus for the past 45 years with multi system involvement and severe joint damage but managed to ride and compete with my horses until 15 years ago Now I compete with large breed dogs and I still have horses I just added some help for the care of the horses and use a handler to travel with my dogs and I go and watch. I didn't just give up something I loved but found a way that I could still participate. A lot can be said for a positive outlook. Exhausted?? Still get up and at least go to the living room- Pain? Medications, braces, crutches, warm baths all will help. The disease is not going to go away and remains your enemy but maybe you can work towards a truce :>)

I haven't hit the angry stage yet. I'm sorry people have been so ugly and not understanding toward you. I'm kind of just floating at an even level... if that makes sense. I'm not angry, I'm not sad (although that stage sucked), I'm just moving along with some patches of fear. Fear for what's coming next, what will I have to cut back on, etc. I still try to put on the "normal" face and act like any other person, but it can get exhausting. I try to keep my diagnosis quiet because I don't want classmates or teachers giving me that "oh you poor thing" look or treating me differently. I absolutely hate that look!

I hate “The Look” people give me. I’m 2 months into lupus therefore; I’m swollen, hives, in a wheelchair or on a cane.:frowning:

Kel,

I became the joke of the warehouse, limping is counter-productive, everybody knew when I got sick and had to go home.... Really, do these people not have anything better to do with their time?

Well, the good news is that I'm not there and I'm laughing that they all still have to be : p

I'm not angry anymore, but I'm still fighting against changing my diet. I just don't want to give it up. I know I would feel better, but my husband brings home do nuts, and instant breakfast.

This is something that has made me feel normal in this process, I hope it helps you. Taken from: http://fibrofighter.tripod.com/17stages.htm

"Though symptoms of chronic illnesses differ, people with them are united by the denial, anger, fear, hope, and acceptance and other feelings they bring. Below are the five stages that people typically go through when they find out they have a chronic illness. Not everyone goes through these stages in the same order and it is common to go back and forth between stages as your physical health improves or worsens.

No matter what stage you are in, just accept that this is where you belong, go with it, and feel all the emotions you need to feel in order to move to the next stage. Don't rush this process. Let it happen naturally.

If you believe that you are stuck in one of the first four stages permanently, you may want to consult with a therapist. We all have problems that we need to cope with besides this illness, and they can sometimes prevent this process from occurring naturally.

  1. Denial. Any change or loss in your life is likely to bring denial, and learning that you have a chronic disease can bring large doses of it. Someone in denial may believe a disease can't hurt them. They may ignore their doctors' advice that could help keep the disease under control. In the case of people with diabetes that may mean refusing to take medications or eat a proper diet. On the other hand, some people quickly accept a disease and turn their attention toward healing. These people stay abreast of medical advances and work with doctors to keep the disease in check.
  2. Anger. What often fuels denial is anger--anger that an individual was the "one in 1,000" to get a disease. Anger may also be directed inward, with an individual blaming himself or herself for having the illness. The best way to minimize anger is to find outlets for it. Writing in a journal, attending a support group or meeting with a counselor are constructive ways to express anger. Anger is normal and can take a long time to work through. Sometimes a small part of anger stays with you throughout the entire illness.
  3. Fear. Often underlying anger is the fear that comes with having a disease that can't be cured. People with chronic illnesses may start to view life through a "telephoto lens" instead of a "wide-angle lens". They stop planning ahead or making life changes because they believe they won't be around much longer. Fear is often enhanced when people know little about a disease, so combating it often begins with education. The more a person learns about a disease, the more they feel in control of it. Fear also occurs when you lose faith in your ability to fight and to believe in the plan of the Universe. This is the most important stage to work through. Fear does no good. It only causes toxins in your body that will make you sicker. Believe in the Master Plan and let the fear go as soon as you can. It will come back, but don't let it take over. Tell it that it is a useless feeling and that you are stronger than it is.
  4. Grief. Feelings of grief and loss are common because chronic diseases bring life restrictions that others don't have to face. These may include no longer being able to participate in activities once enjoyed, like eating a favorite meal or playing catch with a grandchild. Grief can cause feelings of inadequacy and lead to withdrawal and isolation. Focusing on activities that remain unaffected by an illness can help people overcome these feelings. Those who refuse to think of themselves as 'sick' will have a more positive outlook. Joining a support group can also help. Groups allow people to meet others with the same disease who are still active and accomplishing goals.
  5. Acceptance. Though managing a long-term illness can bring emotional upheaval, it also brings the triumphant feelings and strength that come with overcoming obstacles. Success comes in a variety of forms, whether it's controlling a disease with positive thinking, biofeedback, or physical therapy so well that less medication is needed or accepting that the illness has irrevocably changed your life and some of it is very, very good. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't gotten the illness."

I have days too when I feel like a prisoner in my own home and that makes me angry ! I hate that I can't go to the beach anymore and can't even be outside working in the yard, and garden ......outside for me is a screened in shaded porch.....Even going to the store, especially Wal-mart, the lights make me sick even though I wear a hat, long sleeves, and long pants !!! So I can relate to your anger too, KEL ! And I have suffered with the sciatic and back problems for the last 3 months.....so I feel your pain too ! I do all that I can each day inside the house to stay busy......that is why I work so much on quilt projects and painting ......even keeping busy with that .....the cabin fever does hit often !!!!!

Kel,

I know we all have days like that (okay, maybe weeks). Like you I was sick for years before finally getting a diagnosis via biopsy in Nov.

I injured my back in 2001 and have seen a pain mgt doc since (best thing I ever did was not give up medical rights) so I was somewhat limited prior to the diagnosis of Lupus, Fibro and Sjogren's.

I find when I am angry I take it out on those that had zero to do with my illness, in fact no one is responsible for it, even me. What I am responsible for is how I react to it.

Yes, it is VERY isolating...something my husband doesn't quite understand. Just recently my husband's cousin moved to town and has teenage girls. Now that school is nearly out they hang here and we are finding things to do like making candles, sewing, painting items I have found at Big Lots or thrift stores.

So even though I can't "tan" in the backyard, I CAN still do productive activities.

I do so hope that you find things that you can enjoy. You can't take on the blame for missing your son's games (mine played football for 4 years and I never saw one). He understands, but I had to explain that it wasn't because I didn't want to. Maybe there is a mother that could tape the game and send it to you via email...just a thought.

Be angry, but remember who to be angry at...the disease and not those around you.

Keep kicking butt,

DeAnne

ya, you got that right and i am thru that stage, i think, i guess i was just angry that day, long story but i did not know what was wrong with me for a long time and my doctor told my husband (abusive) of 17 years that it was psychosymatic, so it was hell from there on plus i had one who wouldnt work therefore i didnt have insurance so i just had to suffer, literally, gosh i was in so much pain. thanks

whathappensinvegas said:

Kel,

I know we all have days like that (okay, maybe weeks). Like you I was sick for years before finally getting a diagnosis via biopsy in Nov.

I injured my back in 2001 and have seen a pain mgt doc since (best thing I ever did was not give up medical rights) so I was somewhat limited prior to the diagnosis of Lupus, Fibro and Sjogren's.

I find when I am angry I take it out on those that had zero to do with my illness, in fact no one is responsible for it, even me. What I am responsible for is how I react to it.

Yes, it is VERY isolating...something my husband doesn't quite understand. Just recently my husband's cousin moved to town and has teenage girls. Now that school is nearly out they hang here and we are finding things to do like making candles, sewing, painting items I have found at Big Lots or thrift stores.

So even though I can't "tan" in the backyard, I CAN still do productive activities.

I do so hope that you find things that you can enjoy. You can't take on the blame for missing your son's games (mine played football for 4 years and I never saw one). He understands, but I had to explain that it wasn't because I didn't want to. Maybe there is a mother that could tape the game and send it to you via email...just a thought.

Be angry, but remember who to be angry at...the disease and not those around you.

Keep kicking butt,

DeAnne