Does anyone else get like this? It’s like I have zero tolerance for anything anymore. I irritate myself for being so impatient! Lol…i used to be so patient, and calm and collected. But it seems like it’s just getting worse! & I hate being this way! Any input? Thanks! & I hope everyone is feeling good, or descent or even great!!!
Hi Tiffany,
I do remember going through a difficult time such as you mentioned and didn't like who I was becoming. But cut yourself some slack. This too shall pass. Perhaps it is related to deficiency in certain vitamins you need. If you're not eating right, sleeping well, or overstressed, it may manifest itself in the above. Do you ever listen to calming music.. or do things you enjoy? I draw a lot of help and strength from devotional books...and I pray for help. I need God every minute of every day. You may be going through a grief period trying to deal with the changes that are going on with you. I care about you Tiffany and hope you will get relief from the things that are upsetting you. Prayers for you.
Faye
Thank you! & lately I havent been doing much of anything. I have no energy! But I know I need to take some me time, otherwise I might go crazy! Lol
I do get irritable, have feelings of not being worthwhile, angry, etc., etc. I think Faye hit the nail on the head. It is possible we're grieving for who we were not so long ago. My other thought though and I'll try to ask my doctor, my Lupus hit me very hard after surgery. I used to love to turn up the music, dance around the house and sing! (Yeah, I know I'm old but not dead hehe) When I came home from the hospital in a full brain fog, the music irritated me to no end! So it may be there is something about the Lupus brain that causes us irritations that come from a physical place and makes us people we aren't. It may be a learning process to become the nice us again. A lot of people also suggest therapy to modify our new feelings. I don't know, if you find the answer before I do, please let me know! lol
That does make sense! And I was also thinking maybe it might be because of the decreased levels in energy, and being in constant pain. And I know for myself I never wanna admit my pain to others. It takes a really bad flare for me to admit it. Plus I was always so independent! I didnt need anyone! Now I’m learning to ask for help! Lol… And if I find the answer I’ll let you know! 
Hi Tiffany
The zero tolerance your on about is what raises my temper at times...even though your waiting for a diagnosis.....i'm waiting to see a new rheumo to see if my organs will accept a drug and furthur tests for me...so we're in simular situations although i know what i have i'm still struggling daily with bad pain and this will cause stress besides anxiety and believe me i do know what your going through to a certain degree.
You want a diagnosis and i need to find out what's stopping my organs from excepting strong chemo drugs which the dapsone was....it's so terrible mate and all my love goes out to you. xxxx
i know how you feel, i hope things get better for both of us.. i hate having no control on how i feel... it drives me even more crazy... lol ... i get more angry then anything... but i have hope and faith... everyone on here has been so awesome... this is new for me too, but if you ever need to talk im here :) your new friend Shae
Maybe I choose not to believe the pain and loss of energy is causing me to go mad because I never let the pain get the best of me. I was also one independent woman who would do anything. I didn't need the help either! I'd laugh at that but I'm too ticked off about it today! Has anyone else lost tolerance to loud music, etc.? I don't get how jumbled it makes my head feel.
I love you all and sincerely hope you're all having a pain free day. I've been meaning to ask, Tez, what do chemo drugs have to do with Lupus. I know several others have used chemo drugs for it and can't seem to make the connection. If this isn't cancer, why chemo? xoxox
Hi Kathy,
The chemo drugs are the strongest they found which suppress our immune system from attacking our own body's plus helping regarding our organs.
The Dapsone which my body rejected came out in the early 1900s for leprosy, it killed more people than cured it while it was on a trial basis in Greece but since then they use it for HIV/Cancer and Lupus....that drugs classed as a last resort....it was sending me yellow and it can damage your organs so i was pulled off it straight away.
Love Terri xxx
Hi Everyone,
I feel the same way - I feel that I am not good for much anymore and sometimes I let it get to me emotionally too much. I had a really great successful job that I loved and people who I worked with who respected me and what I did - I didn't want to leave and now all I want to do is be able to go back in some capacity or other. I feel like I'm a burden to others and I never meant to be. I've always been independent even through other times with Lupus. I'm like Faye and I try to work on these feelings in a spiritual way. Still though, I wake up and look at the clock and wonder how in the world I'm going to fill this long, painful, day of fatigue.
I've also resigned myself to creating new things to do - I read more books and I've been playing some games like Words with Friends and doing some simple crosswords to help with my brain fog a little. I also decided that I would learn one new thing every single day. I visit a website like Discovery or How Stuff Works every day and just learn some random thing - something fun each day. I also keep an online journal on this LDS site - I am not LDS, but they have a great private online journaling site open for anyone to use. Of course, being involved here helps enormously. These are all just little things and sometimes I don't even have the energy for them, but every little bit helps some.
These things don't fix it all, but they are just little tools to try to beat back the depression and the boredom and the fidgets from being inactive when I'm such an active person in my heart. Also, my home life here with my parents is extremely difficult and requires me to be calm and patient at all times.
My Psychiatrist does give me anti-anxiety medication because I have a history of severe depression - those help when I'm having an especially challenging day. I've no money to see him right now, but he talks to me on the phone for free and has my best interests in mind. He is a very good doctor and a good person too. I only take it when I really need it.
I hate to be so whiny- but I know we all suffer from some anxiety during the day. I'm so grateful for all of you here on LWL because you are all truly my savings grace from most of it! I'm in my happy place here!
Draginfli
You're not whiny at all, Ang...You're being honest and supportive. Personally, I appreciate your candor. xoxxo Kathy
Ang...a large majority of us are in the same boat and relieving it off your chest is better than depression setting in and if all those other daily little routines help you, then go for it.
Besides loving the site...my favourite hobby besides is burning ste's earholes with my temper the poor bloke (No divorce papers yet)...just having the crack Ang to try and cheer you up.
Your with friends who love you very much, so don't ever feel your on your own.
Love you loads mate. xxxx
Thank you Terri and Kadeeee and everyone - it is good when we have a post like this for everyone to let things out! We get cheered up and usually get a laugh with our friends - and like Terri said, we find out once again that we are not alone! :)
LWL Rocks!
Love you loads too Terri!
Tez_20 said:
Ang...a large majority of us are in the same boat and relieving it off your chest is better than depression setting in and if all those other daily little routines help you, then go for it.
Besides loving the site...my favourite hobby besides is burning ste's earholes with my temper the poor bloke (No divorce papers yet)...just having the crack Ang to try and cheer you up.
Your with friends who love you very much, so don't ever feel your on your own.
Love you loads mate. xxxx
I get like that also! I give myself time outs because the last thing I want to do is take my mood out on my two teenagers. I know when I'm on Prednisone my mood is much worse, I get so cranky and irritable and just plain "bitchy". The best thing that I've found so far is giving myself the time outs...... good luck!
Hello lupusmomof2,
I've heard that prednisone can make your mood worse...well it's a good job i never went on it because i'm just about bareable to live with now as it is.
You got the right attitude though taking tome out so your kids don't get none of it and you do have Ace kids how you've soken about them.
Loads of love Terri xxx
lupusmomof2 said:
I get like that also! I give myself time outs because the last thing I want to do is take my mood out on my two teenagers. I know when I'm on Prednisone my mood is much worse, I get so cranky and irritable and just plain "bitchy". The best thing that I've found so far is giving myself the time outs...... good luck!
I turn into a bear on prednisone!
I get the same way…it’s a vicious cycle! I get mad at something small, then get mad at the fact I’m getting mad over something so silly, etc… I was prescribed Xanax to take as needed, but I seem to need something more often than I want to take something like Xanax. Next doc’s appointment I am going to discuss that with her.
I think I may look into therapy as well. I know of a wonderful psychiatrist, I just need to find out if my insurance will cover it…
((hugs)) I know this is incredibly frustrating… Here’s to discovering some answers!
Tez_20 said:
Hello lupusmomof2,
I’ve heard that prednisone can make your mood worse…well it’s a good job i never went on it because i’m just about bareable to live with now as it is.
You got the right attitude though taking tome out so your kids don’t get none of it and you do have Ace kids how you’ve soken about them.
Loads of love Terri xxx
lupusmomof2 said:I get like that also! I give myself time outs because the last thing I want to do is take my mood out on my two teenagers. I know when I’m on Prednisone my mood is much worse, I get so cranky and irritable and just plain “bitchy”. The best thing that I’ve found so far is giving myself the time outs… good luck!
Terri and SweetNovember,
Terri, thank you for the kind words and encouragement. You're wonderful the way you always know what to say to encourage me, even when you just agree that I've had a good idea, such as taking the time-outs so as not to take my moods out on my kids. Keep it up, you're great for my esteem!!!
SweetNovember, it's nice to know I'm not the only one, but I'm sorry the Prednisone affects you like that also! I don't take Xanax, but I am prescribed Valium as a muscle relaxer, and because I don't take it as often as it's prescribed I am able to take it for my mood if I absolutely have to. I would be interested in what your doctor says when you see him/her next, if you don't mind sharing the information. Also, I think therapy is a GREAT idea. I was seeing a wonderful woman who was a counselor, not sure exactly the title.....she is certified but still working on the degree she needs to become a psychologist. Anyway, for three and a half years I saw her and because my insurance didn't cover it at all, she never charged me a cent! And she knew about my medical problems, so if I had to call at the last minute to cancel, she totally unerstood. She was amazing. Anyway, her husband was offered a job out of state and they moved about 7 months ago and i miss my weekly appointments. It got to the point that I felt like I was having a chat with a friend instead of going to therapy! She was there each week for me to talk to about all my symptoms and how frustrated I was, and when I got my diagnosises of Fibro and Lupus I called her and she made room so that i could come in that day even though it wasn't my regular appointment day. She gave me meditation CDs, helped with research on Lupus, etc. I'm not seeing anyone now, because there aren't any therapists in town that will take me pro bono, and the one place in town that has a sliding scale is not a place that I want to go (that's a whole other topic).
Anyway, thank you Terri and SweetNovember!!!!!!
Lupusmomof2,
I will definitely let you know what the doc says! I was thinking of asking about Valium, as I have anxiety/insomnia/muscle pain. I just wasn’t sure if it’s something she’d want to prescribe long-term (or as more than a temporary fix).
My best friend goes to the therapist I mentioned. Her son (my godson) passed away when he was 2 months old from heart defects associated with William’s Syndrome. She just loves her therapist and, like you, said it was more like talking to a friend than therapy.
I’m sorry you’re having trouble finding a therapist that works for you! It’s hard enough to find one that’s affordable, let alone one with whom you feel comfortable with during therapy! I hope you are able to find someone. In the meantime, I have really found this group so wonderful and supportive-it’s truly the next best thing!
((hugs))
lupusmomof2 said:
Terri and SweetNovember,
Terri, thank you for the kind words and encouragement. You’re wonderful the way you always know what to say to encourage me, even when you just agree that I’ve had a good idea, such as taking the time-outs so as not to take my moods out on my kids. Keep it up, you’re great for my esteem!!!
SweetNovember, it’s nice to know I’m not the only one, but I’m sorry the Prednisone affects you like that also! I don’t take Xanax, but I am prescribed Valium as a muscle relaxer, and because I don’t take it as often as it’s prescribed I am able to take it for my mood if I absolutely have to. I would be interested in what your doctor says when you see him/her next, if you don’t mind sharing the information. Also, I think therapy is a GREAT idea. I was seeing a wonderful woman who was a counselor, not sure exactly the title…she is certified but still working on the degree she needs to become a psychologist. Anyway, for three and a half years I saw her and because my insurance didn’t cover it at all, she never charged me a cent! And she knew about my medical problems, so if I had to call at the last minute to cancel, she totally unerstood. She was amazing. Anyway, her husband was offered a job out of state and they moved about 7 months ago and i miss my weekly appointments. It got to the point that I felt like I was having a chat with a friend instead of going to therapy! She was there each week for me to talk to about all my symptoms and how frustrated I was, and when I got my diagnosises of Fibro and Lupus I called her and she made room so that i could come in that day even though it wasn’t my regular appointment day. She gave me meditation CDs, helped with research on Lupus, etc. I’m not seeing anyone now, because there aren’t any therapists in town that will take me pro bono, and the one place in town that has a sliding scale is not a place that I want to go (that’s a whole other topic).
Anyway, thank you Terri and SweetNovember!!!
LupusMom,
It took me a while to find a therapist who I was comfortable with as well. I would take one appointment with them and if they seemed a bit to much like "lecturers" or like they just gave me links to websites and stuff, instead of spending time getting to know me and explain - I just didn't go back to them and tried someone else. I'm just a very real person, a regular person and when I'm needing emotional help, I need someone who is capable of helping me in a down to earth, emotional way. Of course they should be knowledgeable, but some people, even counselors can be lacking in that humanity that makes a person a real person.
I did finally find someone who also saw me for free after my insurance ended. He was a Christian based therapist and so his goal was not so much on the money. He had moved his office to his home to save money so he could see some patients for less or for sliding fees and his goal was to work us through our issues and see us come out better for it. He said that he had patients who were able to pay the full price and so it all worked out for him and his families budget. Great man! He had many tools in his bag and he was truly a blessing with his knowledge and the kind way that he shared his knowledge and help - you know, not in a judging and lecturing way, but he really cared. It wasn't about him being smarter or knowing more and lording that over anyone - it was about him being helpful and caring.
Have you looked into any of the Christian based therapists? Someone through your church maybe? Maybe there are some who counsel out of their homes like that?
Hugs to you,
Draginfli
lupusmomof2 said:
Terri and SweetNovember,
Terri, thank you for the kind words and encouragement. You're wonderful the way you always know what to say to encourage me, even when you just agree that I've had a good idea, such as taking the time-outs so as not to take my moods out on my kids. Keep it up, you're great for my esteem!!!
SweetNovember, it's nice to know I'm not the only one, but I'm sorry the Prednisone affects you like that also! I don't take Xanax, but I am prescribed Valium as a muscle relaxer, and because I don't take it as often as it's prescribed I am able to take it for my mood if I absolutely have to. I would be interested in what your doctor says when you see him/her next, if you don't mind sharing the information. Also, I think therapy is a GREAT idea. I was seeing a wonderful woman who was a counselor, not sure exactly the title.....she is certified but still working on the degree she needs to become a psychologist. Anyway, for three and a half years I saw her and because my insurance didn't cover it at all, she never charged me a cent! And she knew about my medical problems, so if I had to call at the last minute to cancel, she totally unerstood. She was amazing. Anyway, her husband was offered a job out of state and they moved about 7 months ago and i miss my weekly appointments. It got to the point that I felt like I was having a chat with a friend instead of going to therapy! She was there each week for me to talk to about all my symptoms and how frustrated I was, and when I got my diagnosises of Fibro and Lupus I called her and she made room so that i could come in that day even though it wasn't my regular appointment day. She gave me meditation CDs, helped with research on Lupus, etc. I'm not seeing anyone now, because there aren't any therapists in town that will take me pro bono, and the one place in town that has a sliding scale is not a place that I want to go (that's a whole other topic).
Anyway, thank you Terri and SweetNovember!!!!!!
Hi lupusmomof2,
I do believe in encourageing people especially how your opening up since you joined showing your true feelings...all this helps you and othe member's.
Your idea's which i encourage are coming from you inside which is an excellent attribute to the site and you speak of what you know and what you've gone through and this is what a lupus site needs...absolute try feeling of what we suffer and any experiences you've had if you find the courage to same them.
You have given such loving attributes about your sons and especially the one 14 in your blog and that's marvellous considering his moms health...you need closeness like that when your going through lupus symptoms and discovering what it holds for you daily and when your truly loved anyone who loves you totally will never walk away.
Love you dearly my friend xxxx