Anxiety/grief/guilt

[Guest guest]

Well I feel like I'm on the rollar coaster again.Seems that all the recent events have caught up with me. Having lots of anxiety, and pain. I am so tired of all this. Methotrexate seems to be not working like it did before. Of course all the recent stress and reducing my prednisone is not helping. I am on an extremely slow taper 1mg a month. Each week I lower the dose a little more. Week one I take the lower dose two days a week. Week two I lower the dose on 3 days and so on. At the end of the month I am taking the 1mg less for all seven days. I hate it when I feel very anxious, and panicky. My doc has given me Xanax to take which usually helps but during the last couple of weeks nothings seems to be working well. Intellectually I know this will pass and that this is the result of the added stressors. Yesterday I had a hard time, I was fearful that my dear grandaughter who is

11 could have sarcoid in her future. I have a dear friend who is a nurse and a physician's assistant. She is a terrific person who has worked in several specialties over the years. When I worked in the OR she was employed by the Open Heart Team. Later she began working for a Physiatrist (rehab doc) and a couple of years ago she switched specialties and is now working for a pulmonary group. She is the person that I see for my sleep apnea. I called her because we each respect each other so much, I asked her what she thought of the doctors in the group she works for, were they knowledgeable about sarcoid. She said they were and we discussed each doc's personality and decided on one from her group who would be the type of person Joe could relate to and who would not have a problem working with Dr. Bauhman or Dr. Sharma. I have finely made the decision that I will go out of the area to Dr. Baughman

to get his opinion as I hate to admiat it but it seems that my disease progress is in a real difficult flare. My pain is unbelievable and my meds are not working. Yesterday I felt like I was going out of my mind. I realize that the NS has effected my serotonin level and that stress is only making it worse. I made an appointment with my orthopedist to check out my back and left shoulder since they have really been hurting since my scooter fell over and and I hit my shoulder on the curb. Had therapy for my shoulder for a month helped a lot but realy did not get rid of the pain. I am going yo call my doc and see if I can increase my methotrexate to 15mg. I know we all feel this at one time or the oather but I am sick of this disease and need a vacation as my doctor put it, and he wasn't talking about going somewhere. I just need the world to stop while I try to regroup my life and body. 36 years with this darn disease sometimes gets

to me big time. Joe will be going to Colorado for a week for the National Keystone Games. He and my grandaughter will be both competeing. His doctors agreed that he should go and have fun and then come back and have the intensive prednisone treatment given for new sarcoid patients. His new family doc is doing all the things I would want him to do. He admits that he needs to learn more about sarcoidosis. My son told him that I had lots of material for professionals and he asked that I share them with him. Joe and I will make appointments with Dr. Baughman. It's either that or s Hopkins for me. Any suggestions friends.Right now I need someone to help me think.my poor sarcoid brain is telling me it is just worn out. I am so glad to have all of you at my side when I get like this. And as Theresa has said Suicide is not an option. So

good to know that you are all there behind me, I can feel your hugs and prayers, know that I have been through this many times over the years and it does get better. Your Sarc Buddy, Judy in PA

[Guest guest]

Hi Judy,Even though you're decreasing the pred slowly, it can be bad I know. When I start decreasing my pred, my dr said she wants me to go very slow too (1mg a month). Pain can make everything worse. I've heard fantastic things about Dr. Sharma and Dr. Baughman. I go to s Hopkins and see a great specialist there. You've had this a long time and I know you're worn out both emotionally and physically. Let your dr know just how bad you feel. Please know that you'll be in my prayers and thoughts everyday.Blessings,Beckyrjbasso wrote: Well I feel like I'm on the rollar coaster again.Seems that all the recent events have caught up with me. Having lots of anxiety, and pain. I am so tired of all this. Methotrexate seems to be not working like it did before. Of course all the recent stress and reducing my prednisone is not helping. I am on an extremely slow taper 1mg a month. Each week I lower the dose a little more. Week one I take the lower dose two days a week. Week two I lower the dose on 3 days and so on. At the end of the month I am taking the 1mg less for all seven days. I hate it when I feel very anxious, and panicky. My doc has given me Xanax to take which usually helps but during the last couple of weeks nothings seems to be working well. Intellectually I know this will pass and that this is the result of the added stressors. Yesterday I had a hard time, I was

fearful that my dear grandaughter who is 11 could have sarcoid in her future. I have a dear friend who is a nurse and a physician's assistant. She is a terrific person who has worked in several specialties over the years. When I worked in the OR she was employed by the Open Heart Team. Later she began working for a Physiatrist (rehab doc) and a couple of years ago she switched specialties and is now working for a pulmonary group. She is the person that I see for my sleep apnea. I called her because we each respect each other so much, I asked her what she thought of the doctors in the group she works for, were they knowledgeable about sarcoid. She said they were and we discussed each doc's personality and decided on one from her group who would be the type of person Joe could relate to and who would not have a problem working with Dr. Bauhman or Dr. Sharma. I have finely made the decision that

I will go out of the area to Dr. Baughman to get his opinion as I hate to admiat it but it seems that my disease progress is in a real difficult flare. My pain is unbelievable and my meds are not working. Yesterday I felt like I was going out of my mind. I realize that the NS has effected my serotonin level and that stress is only making it worse. I made an appointment with my orthopedist to check out my back and left shoulder since they have really been hurting since my scooter fell over and and I hit my shoulder on the curb. Had therapy for my shoulder for a month helped a lot but realy did not get rid of the pain. I am going yo call my doc and see if I can increase my methotrexate to 15mg. I know we all feel this at one time or the oather but I am sick of this disease and need a vacation as my doctor put it, and he wasn't talking about going somewhere. I just need the world to stop while I try to regroup my life and body. 36

years with this darn disease sometimes gets to me big time. Joe will be going to Colorado for a week for the National Keystone Games. He and my grandaughter will be both competeing. His doctors agreed that he should go and have fun and then come back and have the intensive prednisone treatment given for new sarcoid patients. His new family doc is doing all the things I would want him to do. He admits that he needs to learn more about sarcoidosis. My son told him that I had lots of material for professionals and he asked that I share them with him. Joe and I will make appointments with Dr. Baughman. It's either that or s Hopkins for me. Any suggestions friends.Right now I need someone to help me think.my poor sarcoid brain is telling me it is just worn out. I am so glad to have all of you at my side when I get like this. And as Theresa has said Suicide is not

an option. So good to know that you are all there behind me, I can feel your hugs and prayers, know that I have been through this many times over the years and it does get better. Your Sarc Buddy, Judy in PA

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[Guest guest]

Judy,

I don't need to tell you that forecasting the future is not a good thing to do to our bodies or brains. The cycle that you are putting yourself into is being induced by the sarcoidosis, and you are right-- those seratonin levels need adjusting.

When you are stressing out like this-- do you have a guided meditation tape to listen to. Something that will tell you to inhale slowly, exhale, focusing only on your breath?

I have found that when I can't do the self-talk to get myself into a meditative state- that I can put on a CD and just let it guide me. This is so very important, as when we are in a flare- we need to use the "stop" technique on ourself, so that we don't end up spinning out of control.

One that I love is the Celestine Prophecy Guided Meditation CD-- as it walks you down a path to the ocean front, with the sound of the waves (real waves) lapping at the beach, the gulls, the rhythms of the ocean. It walks you into such a deep place of relaxation-- that you may very well fall asleep. It has 3 or 4 different guidiances, and they are all excellant. I'll see if I have a copy-- Tor may have abscounded with mine.

You are in our prayers-- and know that you are being held close to my heart,

Tracie

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Tracie,I have tried multiple times to get a CD of the ocean (no music/talking...just waves hitting the shore, etc.). I have bought several but none of them have sounded like what you describe. Where can I find this one that you are talking about?Blessings,Beckytiodaat@... wrote: Judy, I don't need to tell you that forecasting the future is not a good thing to do to our bodies or brains. The cycle that you are putting yourself into is being induced by the sarcoidosis, and you are right-- those seratonin levels need adjusting. When you are stressing out like this-- do you have a guided meditation tape to listen to. Something that will tell you to inhale slowly, exhale, focusing only on your breath? I have found that when I can't do the self-talk to get myself into a meditative state- that I can put on a CD and just let it guide me. This is so very important, as when we are in a flare- we need to use the "stop" technique on ourself, so that we don't end up spinning out of control. One that I love

is the Celestine Prophecy Guided Meditation CD-- as it walks you down a path to the ocean front, with the sound of the waves (real waves) lapping at the beach, the gulls, the rhythms of the ocean. It walks you into such a deep place of relaxation-- that you may very well fall asleep. It has 3 or 4 different guidiances, and they are all excellant. I'll see if I have a copy-- Tor may have abscounded with mine. You are in our prayers-- and know that you are being held close to my heart, Tracie Get a sneak peek of the all-new AOL.com.

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[Guest guest]

Becky,

You can go to Amazon.com and order it. It's the tape or CD called Celestine Meditations--(r something very close to that.Get a sneak peek of the all-new AOL.com.

[Guest guest]

Thanks a bunch Tracie. I'll be looking for it.Blessings,Beckytiodaat@... wrote: Becky, You can go to Amazon.com and order it. It's the tape or CD called Celestine Meditations--(r something very

close to that.Get a sneak peek of the all-new AOL.com.

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