What To Say, What To Say
I was not scheduled to see my rheumy till the beginning of Apr but I could no longer hide my head in the sand abt what I was going thru & I got into see him on Fri a.m.
I had to tell him that 3/4 of the time, since christmas, things just really were not totally good. I was taking my methotrexate injection ever wk & my plaquenil every day but the vasculitis rash was always coming back in all it's glory & itch. I had to tell him that sometimes in the morning & alot of times in evening I had pain. I don't know if I can find a way to describe it-burning, twisting, stiff, swollen, feeling like a china doll that if anyone touched me I'd break. One night I wanted to get up to go in the kitchen & I had to get hubby to help me up. I told him too that it almost felt like by night my whole body was having a sort of physical nervous breakdown. He wondered if it was a fatigue issue as he knows me & sleep don't get along too well. I could tell him that it was beyond that. I really can't think of how to put it all into words.
I mean, darn it all, I want to control this lupus thing naturally. I'm quite set on not wanting to have to keep pumping my body with all these scary drugs. But alas I had to take my head out of the sand. So he's added prednisone for a few months in addition to the other two I named above. One good thing I've lost 8 lbs the last while so even though my dose is small I've got a bit of wiggle room for weight. He has not ruled out that I might need a small dose of prednisone for a long haul. Darn it all!!!!! He did give me a bit of serious talk to abt lifestyle so I'm on the start of at all times thinking before doing or planning & going, etc. etc.
In talking with a very special intuitive friend of mine she pointed out something that I never ever would of considered abt myself but she might be very very right. She says my biggest issue is the sack I carry around in life with me that I keep loading with all my familys & friends issues, problems, troubles. She says that I have to learn to be there to listen & offer what aid I can, when possible, but that I cannot shoulder their issue & make it mine or not rest until I fix it. She also brought up a wonderful point abt saying "my lupus". She said never ever take ownership of it, it does not own me. It can be "the lupus" or "lupus" but never ever let it own you.
I did get a recommendation that I shd seriously register for a weekly yoga class for the gentle physical benefits for muscles & joints for the pain issues. Oh my wise wise massage therapist!!!! So I think I've found a studio that has something that can be a good fit for me. I will never ever quite my zumba class though as that is one true true joy I have every week. Of course I need my Wed morning at the cat shelter as they are such wonderful medicine for all that ails you.
So I guess I'm the road to reshaping, sifting, rebuilding, changing & on & on I go.
All is well with hubby. He's had a few COPD shortness of breath episodes but when it's colder here & the air is thinner it kind of goes with it & he just has to remind himself to pace himself better. He goes to cancer clinic for his next checkup the middle of March so on we go.
I'm not sure how my dad is actually feeling. He seems to be taking each day as it comes for what it has to offer but dads not the type of show or talk abt feelings so it's like trying to get blood from a stone. One thing I do know is he always leans more to the negative then the positive & I don't know if at this stage in life that thinking can be changed. Remember Pat-don't put this in your life's sack!
Well, life goes on, I'll sign off for now but not before thanking all my friends who check this out. I so value your thoughts & your love.
I had to tell him that 3/4 of the time, since christmas, things just really were not totally good. I was taking my methotrexate injection ever wk & my plaquenil every day but the vasculitis rash was always coming back in all it's glory & itch. I had to tell him that sometimes in the morning & alot of times in evening I had pain. I don't know if I can find a way to describe it-burning, twisting, stiff, swollen, feeling like a china doll that if anyone touched me I'd break. One night I wanted to get up to go in the kitchen & I had to get hubby to help me up. I told him too that it almost felt like by night my whole body was having a sort of physical nervous breakdown. He wondered if it was a fatigue issue as he knows me & sleep don't get along too well. I could tell him that it was beyond that. I really can't think of how to put it all into words.
I mean, darn it all, I want to control this lupus thing naturally. I'm quite set on not wanting to have to keep pumping my body with all these scary drugs. But alas I had to take my head out of the sand. So he's added prednisone for a few months in addition to the other two I named above. One good thing I've lost 8 lbs the last while so even though my dose is small I've got a bit of wiggle room for weight. He has not ruled out that I might need a small dose of prednisone for a long haul. Darn it all!!!!! He did give me a bit of serious talk to abt lifestyle so I'm on the start of at all times thinking before doing or planning & going, etc. etc.
In talking with a very special intuitive friend of mine she pointed out something that I never ever would of considered abt myself but she might be very very right. She says my biggest issue is the sack I carry around in life with me that I keep loading with all my familys & friends issues, problems, troubles. She says that I have to learn to be there to listen & offer what aid I can, when possible, but that I cannot shoulder their issue & make it mine or not rest until I fix it. She also brought up a wonderful point abt saying "my lupus". She said never ever take ownership of it, it does not own me. It can be "the lupus" or "lupus" but never ever let it own you.
I did get a recommendation that I shd seriously register for a weekly yoga class for the gentle physical benefits for muscles & joints for the pain issues. Oh my wise wise massage therapist!!!! So I think I've found a studio that has something that can be a good fit for me. I will never ever quite my zumba class though as that is one true true joy I have every week. Of course I need my Wed morning at the cat shelter as they are such wonderful medicine for all that ails you.
So I guess I'm the road to reshaping, sifting, rebuilding, changing & on & on I go.
All is well with hubby. He's had a few COPD shortness of breath episodes but when it's colder here & the air is thinner it kind of goes with it & he just has to remind himself to pace himself better. He goes to cancer clinic for his next checkup the middle of March so on we go.
I'm not sure how my dad is actually feeling. He seems to be taking each day as it comes for what it has to offer but dads not the type of show or talk abt feelings so it's like trying to get blood from a stone. One thing I do know is he always leans more to the negative then the positive & I don't know if at this stage in life that thinking can be changed. Remember Pat-don't put this in your life's sack!
Well, life goes on, I'll sign off for now but not before thanking all my friends who check this out. I so value your thoughts & your love.
Replies
I have so many thoughts about your journal, I don\'t know where to begin! :D
First, I am sorry you have been struggling so. Dash it all! I know just how you are feeling. You WANT To handle it with diet/lifestyle, not meds, but, then you feel like maybe you should just come to terms with the meds.
I know I\'ve shared this before, but, it comes to mind again. My wonderful massage therapists who really specialized in just trying to help and heal others, said \"mechelle, I want you to really try to think of this med as a wonderful blessing in your life. It could give you back your life, it could REALLY help you. But how can it help you, if your mind is dead set against it? If you think of it as evil, your body will too. Try to think of it as this golden bottle of goodness that is the link between you and a better life.\" I was *really* ill when she said that. In fact, she\'d see me hobble into her place and almost cry, it was so severe, so she knew I needed to try something new. But, she was totally right. My body didn\'t see it as evil or toxic because my mind had been set. I think that\'s why the mtx worked so well for me.
I don\'t WANT you to have to take it, but I do want you to feel better, so maybe a mental shift might overtake that darn blasted rash. It\'s just some food for thought. I could totally be wrong and you can lash me with a wet noodle, OK?
I don\'t know what to tell you about the prednisone honestly. I wish I did. I understand why you don\'t want to take it. I\'ve been there. Maybe just pray about it. If you don\'t feel at peace then, maybe talk to your doctor about how it\'s giving you anxiety, etc. ? I\'ll pray about it too. I\'m thinking you are onto something when you say the rash might be related to nerves/anxiety.
I totally agree with your friend that you may be trying to carry too much on your shoulders and the burden is too much. It\'s one thing to try to help someone, but it\'s another to absorb it onto or into your person. I once saw a Christian counselor who told me all of that and suggested I read this Christian book on \"boundaries\" and it was very helpful. I do what I can to help someone, then pray for God to fix the rest of their problems. He\'s a big God, so I don\'t have to do it all, ; ). You get the idea. It\'s hard and we\'ll never be perfect at it, but it really did help me put up some walls in my mind.
The thing about owning lupus, though, hmmmm. That is interesting, but, I think you need to find the right strategy for you personally. For me, acceptance of this lupus has helped relieve a lot of mental conflict and drama and helped me relax a lot and have peace. Only you can know if acceptance is a good or bad path for you. What do you think?
Yay for YOGA!!!!! I think that\'s a smashing idea! : D My only advice about that is to tell the instructor privately before hand what your limitations might be. Some instructor\'s agendas are to Push, Push, Push, students and as you know, pushing isn\'t always good for us, so, communication is key here, as you always say too. haha I have a yoga instructor living next door to me and she is one of those that people know all over the world, and she is a bossy pusher personality. So aren\'t you glad she\'s not where you are?! haha
About your flare, I think \"this too shall pass.\" That always calmed me down when I felt I couldn\'t see the light at the end of the tunnel. Do you remember MIneralPearl on DS? She told me that her pastor told her \"Jesus is above the name of lupus.\" And it\'s so true!
I pray for healing and blessings for you in Jesus\' name! amen!
I was happy to see another journal. You always surprise me. I am sorry I have not checked it out sooner.
I applaud you my friend for doing the right thing. Going to the doctor\'s is such a chore for me but happy you went. So some new plans on how to manage your your life. That could be a challenge all by itself. I know you have the strength to do that. Yoga will be good for you. I hear so many good things about Yoga.
prednisone hopefully will help with the flare ups. Sounds like you have a good plan to get better. Of course I will add some love and prayers to the mix and soon you will be better. Sorry you have to go through all this. Good to hear Mel is doing ok.
I will be praying for you and your hubby and dad. Love, Frieda
I am so sorry to se you have been struggling my friend with your Lupus, that must be very hard for you. Sending you lots of hugs and to let you know I am here for you.
Hi Kitty, I am so LATE checking in so sorry. I\'m not too familiar with Lupus but admire that you want to tackle it naturally. I think avoiding meds whenever possible is always a smart choice. Good luck with your yoga too! Glad to hear your hub is doing okay, considering his challenges too. Hope your dad is okay. Boy, you have a ton on your plate. Prayers and hugs daily!!! xxoo
You are such an inspiration to me. I kept saying (in my head) The Lupus instead of My Lupus, it does reshape it.
I\'m sorry you\'re hurting. Yoga is crazy good for stiffness and it works miracles on my back and is very relaxing and focusing at the same time.
I have a love/hate relationship with Prednisone. It makes me feel like Super Woman but also makes me crazy as a loon. I go back and forth with my pain killers, I\'d love not to take them but sometimes I am so grateful to have them.
I don\'t know what to say about the men in your life. Cancer is awful. It is good they have you in their lives. I love your \'so on we go\', it really incompasses a lot.
Take good care of yourself and let me know how you like the yoga.
I agree with your friend.....if you think differently, you can feel differently. Embrace everything in your life, wether it be good or bad.
That said, I hope you start to feel better soon......I can relate to the love hate thing with the meds.....but they are needed.
Beth