I was diagnosed with Lupus first then had right side of body feel like my arm and leg fell asleep and also 2 bouts of optic neuritis. The MS therapy put my lupus intonremission for over 10 years. I have a lupus flare now and it is the worst I have ever had. Good luck you are not alone
Your post was very heartfelt by me. I am having a hard time trying to pace my life as well, and I continue to send myself into flares from stress. I think I might try yoga to try and get more in tune with myself, but I worry how I will balance that when I start teaching this fall again. I am continuing to recover from the brain surgery I had to have to fix my vestibular vertigo, which was caused by my SLE. I really like your ring idea, I think it is a good reminder that even though we have this frustrating condition, we are the ones in control. Thanks for sharing your thoughts.
I hope it's not MS I will pray for your good health! My GP thinks I have Lupus based on my tests, but I am still going to see a Rheumatologist in a few months and I also have an ultrasound for my liver which is inflammed. I already have Epilepsy and Narcolepsy... bah too much sometimes! Hope the best for you.
[QUOTE=MicRoMediC;bt564] ... Thanks for at least getting my brain thinking about it.[/QUOTE]
So if one's health can rapidly spiral downward, can the converse (the opposite) also be true? This would be where your health rapidly spirals upward.
Would that be possible for, say, someone who addressed the root cause of their dysfunction?
Didn't think much about it but now that I do think about it, my ex and I were going through a really rough patch and were breaking up. I figure I would have come out of my slump when I became much happier in January, it still spiraled downward. Thanks for at least getting my brain thinking about it.
[quote]... I found a picture of me about a year and a half ago before my health declined so rapidly and I looked so healthy. ... [/quote]
Did anything happen in your life a year and a half ago? Applying the "law of cause and effect", there's usually a trigger for dramatic health changes. For me, it was starting college (wasn't really interested, but I didn't have much of a choice), after almost drowning at the lake the year before. See my introductory post for more details.
Thanks JT. I really needed someone to just respond to me, I've been feeling kinda lonely lately. I do appreciate your perspective. Anyway, thanks again. Have a great day.
May I offer a male perspective? Time for your boyfriend to BRUTALIZE THIS GUY'S ASS or at least send a strong message.
I'm a 40 year old male with Lupus, Lupus Nephritis, recent heart bypass surgery, chronic pain, chronic fatigue, super high blood pressure, APLA, and flagging kidneys. Lupus is no joke, and must be managed well by YOU. This includes extricating yourself from unsavory relationships, workflow, and habits.
Be strong, be well, and don't take shit from anyone.
I am still working full time 24 hours on and 48 off rotating shift. It's hard most the time and my body never really catches up on rest. When I work overtime it's 48 hours on and 24 off. As you can imagine I'm pretty exhausted when I get home. Granted we do get to sleep while we're there, we are still "on call". I'm also in nursing school so that makes it that much harder. Anyway, I'm off the steroids now and my hair has started falling out again. I hope you're doing well Angel Oliver. Thanks for replying.
Yes i think of you often my friend.Im sorry you have gotten worse but hopefully once the MTX i presume this will be the meds you will be on,hopefully soon you will start to get a little better.Let me know how you get on.Glad your hair has stopped falling out too.Are you still working too? Catch up with you soon.Lots of love.xxxxx
Being a Big Sister sounds like a wonderful idea. My mom signed my brother and I up when we were kids and 22 years later I still talk with my "Big Sister". We've become real sisters. I have spent countless weekends, holidays, birthdays and everydays at her house. Her kids are my nieces and nephews. In fact, I am going to pick up my oldest niece from her 1st yr of college in VT and we are roadtripping back to her house in Philly. My sister was a nurse when we met (PEDS Oncology) and she worked a 4/3 shift too. We became very close (obviously) and there was no set schedule. We worked our visits around our schedules. I say "Go for it!". You'll love it. And if the tutoring thing still interests you, I don't see why you can't do both.
I understand what you mean about just needing someone, anyone to respond. I am glad to hear things are better. I think it's nice that your bf wants to take care of you and I get what you mean when you say it isn't his responsibility. I am glad you have the kind of relationship where you can communicate openly.
I haven't thought about tutoring orchestra. I have thought about being a big sister to someone though but with my schedule, 24 hours on and 48 hours off, I can't do the same day every week. I know he works a lot to take care of me and to make sure I'm never without, it's just frustrating at times. I'm a lot better now, I think I just needed one day with him to reassure myself. I have talked to him a lot about it, we're very open and honest in our relationship which makes it such a great relationship. He knows my concerns but continues to say that he wants to take care of me. He's trying to work a lot right now to pay for my nursing school, which I informed him that it was my responsibility not his but he insists.
I do sew quilts, not complicated ones just simple ones but it's all done on a simple machine, not a high dollar one cuz I can't afford one of those. My mom sews a lot and I love working with kiddos and I know that parents with preemies have an especially hard time with things and manufacturers don't make a lot of preemie things so I wanted to do something special for them. I used to work in a children's hospital but I never get to see where my blankets go, which is fine. In the back of my mind I know that they go to a good cause. It keeps me busy when I'm bored and it gives me a sense of accomplishment. Anyway, thanks for replying to my blog, I really needed someone to.
WOW! I can hear plainly in your words how stressed and upset you are and I can understand that need to feel like you belong. I don't know where you live, but have you considered joining a local community or church orchestra? Or tutoring? I have alot of music teacher friends and they make nice money tutoring. Plus, it would help you feel a little less loney by being out more.
I can understand that you want to be able to spend time with your bf and feel like you are more important to him then overtime. I would be willing to bet that he wouldn't be working so hard if he didn't want to support you so well. I know that's not really a comfort, but does he know how you feel about all this? I'm a big talk out your problems believer.
I think it's awesome that you sew premie blankies. Do you make quilts? Do you machine or hand sew? How did you get started with that? Do you ever get to see these premies your blankies go to?
Oh my lovely girl, so stressed,so much to deal with for one person.Please keep coming here and get it all out.I feel so sad you are going through all this on top of a flare as well. But you need to make time for yourself.
I too dont have anyone,i too have felt really low lately on top of the pain.So, on tuesday im booked in for a cheap haircut n a massage.
You need to do something like this,something for YOU,to forget for half an hour.
Remember this deep despair will pass,things will all come together.I know yur family are in turmoil,but you can not worry about everyone n everything all the time....not good for you.So try n make time for you.I know another human,a friend would be better,but maybe ask your boyfriend...go for a picnic near the water or just sit somewhere peaceful,together or alone n read a book.Or like i said,come here....we care...i care.
You are so strong having all this to deal with,even though you wont feel it right now.
Im thinking of you.
It alway's helps to let it all out. Life can be challengeing at times, but try and push through, remembering that there are better days ahead. When you say you don't really have anybody to talk to, you need to know that you have all of us. You mentioned having a boyfriend, and i'm wondering if you are able to confide in him? Sometimes it also helps to keep a diary of how your feeling, and although you may not be phsically talking to someone, I still find you feel alot better after putting it all down on paper.
I have a friend who suffers from bipolar, and I know it can be hard. It's one extreme to another. I understand that your mother needs you right now, and it's good that you can both be there for each other, but as for your friends who need a ride home at 3am, maybe try not answereing the phone lol. You need to focus more on your self, and try to worry a little less about other people's problems and responsibilities. I hope this has helped in some small way...And I hope your feeling better soon. Sending you a big HUG from the land down under..Joaney.
So sorry about your parents I know thats hard.
Hope you feel better soon. My sister husbands a firefighter in Charlotte. He's a Captin now. He loves it.
Glad you enjoyed and also had fun.Just rest as much as possible...the good times will come back/xxxxxx
awww, i'm glad you had such a great weekend! it sounds lovely
Thanks to everyone. I'm feeling a lot better this week. This weekend was great and I'm feeling "good" again. I can only hope to feel this good all the time. Anyway, thanks for the support, it truly meant a lot during this time of need.
Oh micro so sorry to hear how bad you feel. Unfortunately your body needs rest as much as you need that energy and well being. We are all here for you and im sure your poker buddies will so understand and wouldnt want you to feel bad at not being with them.You need to rest to heal. I pray as the days go on you begin to feel better.We are all here for you.Wish i too had that magic wand.....but instead you have al our words to help instead.sending you gentle hugs.Love