honey - you don't have to apologize for spelling. Seems like all of us boomers are the only ones that care about spelling anymore! I know that the whole spelling thing is going to change - texting and all that other stuff has eliminated most of the alphabet! You know - we just have to take life a day at a time because that's all we get. I get upset and angry with my husband but each day I try and just move on and not discuss yesterday................
Love you!
Jan you've got a good point because my hubby believes that you know about moving on and yesterday was another day because some times i ponder on about what happened the day before if it's something that's really got at me.
Jan it may have been going on for ages with your hubby but after 38yrs of marriage something will sort itself.
All my love to you Terri xxx
Nissy,
I understand because I get in those moods too. It seems like I just have an instant moment when I want to just be angry out of nowhere, then I am fine. It's like I don't know what/why I am mad about and my head swims. I was not like this before all my symptoms started. I never found it hard to crack a smile or a joke previous to being in everyday chronic pain. Contrary as to if you are depressed or not, don't feel alone. You are not the only one. Sometimes, I just want to be held and told that everything is going to be ok during these moments.
Hello TamiBug,
Such a lovely piece on the end of your message.
"I just want to be held and told that everything is going to be ok during these moments"
It's funny how these moods get you and all you seem to do afterwards well i do is constantley keep apologising but regarding being held it seems to release the pressure we're going through.
Hugs Terri xxx
Jan
Want to pick your brain about the weight loss. What did you do and how did you do it. I have found it difficult if not impossible to losse while on the steroids and would love some tricks or pointers.
Thank you
Julie
Jan said:
Hi Terri
You know - when I was "diagnosed" I went through all of the emotions - why me, blah blah blah. Then I decided I wasn't going to let this run my life. I've tried very hard to control the flares - I lost 95 pounds (I was at 270), I excersize daily (or try to) I've completely changed my eating habits plus I do acupuncture and massage. For the longest time I felt responsible for his diabetes - I was making all the wrong food choices - I had every single one of my doctors tell me it's not my fault - I can't force him to do, eat or whatever so I needed to stop wasting my time. That helped for awhile but when you love someone it's hard to watch them do that to themselves! I know he's going to die (sooner rather than later) and I don't want to have to watch it. We've had arguments about this - I've told him he can cure his diabetes - I can't cure my Lupus! Guess I just need to regroup and not let it get the best of me - especially since there's nothing I can do about it.
How are you doing? You've been such a wonderful friend already and I haven't even asked how you are.
Good morning Julie
Basically what I've done is pretty much eliminate bad carbs - potatoes, pasta and definetely meat! I know you can't completely eleminate them - that causes depression. I eat alot of fruit, salads, chicken and fish plus I try to exercise most every day - I ride a stationary bike for 30 minutes. Of course you have to splurge once in awhile but just make sure it's once in awhile and not every day. It's a long, long process - think about how long it took to put the weight on - the slower you take it off the better. It gets to the point where the things you quit eating don't even taste good anymore - I'll have a bite of something my husband is eating thinking it'll taste good and it doesn't. It's a life-long change - not something you can stop doing once you've lost weight. Good luck to you - I'm more than happy to help you along!
Julie said:
Jan
Want to pick your brain about the weight loss. What did you do and how did you do it. I have found it difficult if not impossible to losse while on the steroids and would love some tricks or pointers.
Thank you
Julie
Jan said:Hi Terri
You know - when I was "diagnosed" I went through all of the emotions - why me, blah blah blah. Then I decided I wasn't going to let this run my life. I've tried very hard to control the flares - I lost 95 pounds (I was at 270), I excersize daily (or try to) I've completely changed my eating habits plus I do acupuncture and massage. For the longest time I felt responsible for his diabetes - I was making all the wrong food choices - I had every single one of my doctors tell me it's not my fault - I can't force him to do, eat or whatever so I needed to stop wasting my time. That helped for awhile but when you love someone it's hard to watch them do that to themselves! I know he's going to die (sooner rather than later) and I don't want to have to watch it. We've had arguments about this - I've told him he can cure his diabetes - I can't cure my Lupus! Guess I just need to regroup and not let it get the best of me - especially since there's nothing I can do about it.
How are you doing? You've been such a wonderful friend already and I haven't even asked how you are.
I hate you are feeling this way, but I totally understand it. I know our loved ones don't understand fully what this disease does to us. Heck, I'm still learning myself having been diagnosed for only a year. There's a lot that can do this to you from what I've experienced so far: frustration at how this limits you, flares (thankfully that's not been an issue for you right now), stress is a big one for me and the whole culmination of what you deal with in Lupus alone can leave you with anxiety and depressed feelings. I also take cymbalta with my meds and most days it keeps me on even keel. I'd recommend talking to you drs about this. I know keeping a journal helps me purge a lot of stressors. I hope you can find the answers you need, but the only bad questions are the ones that don't get asked. I hope you find yourself feeling better soon also.
Take Care!
Hello Nissy,
It would be great for the members to hear off you as you added an excellent Discussion where so many have got involved.
So please if you can update we on how your feeling besides seeing specialists.
Hugs Terri xxx
As others have said taking control of your health will help tremendously with the anger. It will empower you and that can only help. I found keeping a symptom and test result diary helped me feel more in control of the decisions being made by my caregivers. (doctors husband mama etc) and de-cluttering my environment helped too. Good Luck and God Bless. XXOO
Hi Julie,
All the issues you've pointed out are good ones besides having caregivers besides family.
Nissy is like myself gets out of control and i've had councilling for 3yrs but i was told that it may not help besides attending relaxation classes years back...i have that many issues which connect with my brain and cause my temper to be worse, it's a wonder i know where i am.
Love Terri xxx
I hear that Terri and you have some extenuating circumstances too I realize that. Not to be nosey have you tried anger management classes for individuals with traumatic brain injury. they have local classes and online stuff too. Might help. sounds nutty but we had an old walnut tree that had died and when I got really stressed I would take a baseball bat and whale the heck on that poor dead tree. I think the physicality of it was what worked for me. When I was done I felt more in control and centered. I was also seeing a therapist for the last 5 years but cant right now due to insurance coverage. So like you I am looking for something to replace it. Oddly enough after my first acupuncture session I felt much more loose and relaxed, dont know if that will continue but I hope so. I know I sound like a big ole know it all but I am just trying to tell what I know or think and help anyone that reaches out to me. Lots of Love Julie
Hi Julie,
As a child i was classed as naughty, then growing up into fights very quick fused i am, then the brain damage, plus i suffer with pmt, Hypothydrism, bipolar and manic depression so i've got alot combined besides my own temper ontop.
I've had anger management, i've been in classes for anxiety trying to keep me carm, listening to tapes and visualizing plus classes where you can chat about experiences with other's and i'm not joking i'veblwon a fuse in them and walked out and when i was in the second psychiatric hospital on constnt watch if i got wound up they used to tell me to strip the bed and bunch it for relief...what's the point in that and when i lost me dad i lost the plot so councilling came in but my psychaitrist told me having to many issues ontop besides the temporal lobe epilepsey some people walk away helped and in my case nothing again.
I'm really lucky i'm married to a man who understand me well and when i get to aggressive he walks into another room it takes my head at least 2hrs to come down and then it's through popping valium.
It's sound advice you give out but going through so many fields and i can actually state at 44 i know i won't change...i feel to old in the tooth for it all as my main concern is getting the issues of what i suffer daily under control but like yourself as long as i can give experience at least i'm helping members who appreciate it.
All my love Terri xxx