12-18 month support

[[Co...]]

Thanks Beulah, ....I agree there are just times when you have to do something to sleep or get some relief from severe pain. I think the recommendations of the article leave some latitude for some use of these drugs. I have been successful in managing RA pain with yoga and hot soaks with Epsome salts. So I have avoided ( to the frustration of my RA doc) the big dangerous RA drugs, although I took plenty of Tylenol 2/3 or Ibuprofen with codeine. Now I am worried . I dropped the codeine , tylenol whend I went on the ativan because the ativan pretty much masked all my RA pain. I dropped the codeine without any problem, but know I know the ativan also masked any codeine w/d.  I may ask to have my liver and kidneys evaluated for health.  Although that has been about 4 years ago that I dropped those ...ironically, because the atitan was such good pain relief...man o man...Even when I told my doctor that I thought the I uprofen raised my b/p he didn't believe me. I also gained a lot of water weight on the Ibuprofen.

  ...Well, having said all of that....If nothing else, I have learned to use natural remedies and self care as a front line defense for pain, w/d and fatigue. I have also learned to eat very healthy. Nearly Paleo with modificat ions for vegetarian and allowing some diary...so pretty much Mediterranean /Paleo..lil.....So I have learned a lot on this crazy painful travel.

.....How is your leg pain. I remember so clearly when you couldn't walk and had so much pain. Mine came on late..month 12/13....so it caught me off guard and scared me

.....thanks so much for your reply Beulah...I think of you often We were on the boards early on ...14/15 months ago!  Boy, we have been at this for so long..I hope you are feeling mostly healed.  Love to you Beulah.....coop

[[pe...]]

GMIT, congratulations! I'm so glad to hear it!

 

There really is a lot of healing happening in this thread! It's so great to see.

[[Co...]]

Green,  you are sounding so good. The fact that you can even consider a bike trip is big..Thanks for posting about your body pain too...it goes a long way in helping me believe my crazy body pain is w/d rather than ms or some other awful condition. ...There are so many positive posts here in the last 48 hours. It must be contagious. I woke up feeling fine this morning after pretty decent sleep.. then I read GMT's post and I practically jumped out of bed and did a happy dance. All of the posts of recent healing has totally renewed my belief that I, and my BB friends will heal.  We will all get our lives back. I just re-read  Billy's success story and he as well says that after healing he had no.  none...lasting fear or inability in any way. He said the most that he experiences is a once in awhile "nervousness"...which to me seems part of ' normal' life...

....Happy healing to everyone....coop

[[mr...]]

Hey there gang. Mrs checking in.

 

A bit bluesy & slight "fear" lately. Most just feeling somewhat "cloudy" or "foggy". The "bluesy" feeling presents itself almost like I'm tired, feel a bit "benzo flu-zy", and a lack of motivation, along with a "whisper" or "hint" of  a despair type feeling. I say hints because it used to be much worse. I am grateful for my progress, of course. I miss feeling genuinely happy 99% of the time - my emotions can be "dull" or "negative" (albeit, not heavily - thank you Jesus). All is healing though - Amen! Anyone else experience that almost 'apathetic' / negative emotions? Its like there is a bit of a stubborn 'block' from positive emotions - its not truly there I know. Thanks for the reassurance, all.

 

Okay, deep breath. One moe day almost in the books It is good to read of many feeling relief. Y'all deserve it. I'm soaking in some of that healing as well, from over here

 

Mrs.

[[Co...]]

Just an update....I am 14 months and 11 days out. ...

......I still have on again off again sx. My new sx is bad body pain that caught me off gaurd...hard in month 12/13 and comes and goes. I believe that I am having more good days than bad. I have windows and some effortless days. Often my good /window days come in 2/3 day strings followed by a half day or 12 or so hour wave. My baseline remains at a consistent 85-95%. Most of my remain sx seem to be more physical rather than mental....however the physical sx more often than not engage my health fears. I consider the persistent health fears to be a PTSD of sorts from the heart scares and er trips during months 4 and 6. I may need to do some ' clean up' therapy for these health fears following healing.

.....I woke up great this morning with only moderate body pain. I went shopping all morning with my daughter. No anxiety, dizziness,,d/r, headache or head pressure. We were out and about doing serious shopping for about 4 hours. Usually shopping bothers my eyes and thus triggers my dizziness...not today...I know 4 hours is not a long time, but even before w/d 4 hours in my chair caning my neck and twisting and turning was about as much as I could tolerate.

  . .friends...we are getting better. I know we have months in front of us to go but...from what I am reading on our posts...none of us are where we were this time last year.

....Wishing everyone a string of windows. Our worst days are behind us...our best days are right in front of us.. love , Coop

 

 

 

 

 

ds,....we are getting better...

[[Co...]]

Mrs...yep....the blahs with a 'stoned ' sensation and underlying touches of nameless fear and vague depression ..like the flu is going to show up tomorrow...This cycles for me too on my wavy days. Do sorry that you , who are so positive and upbeat , are under the cloud of it today.

.....It seems that there is not alot we can do to shake it when it comes around except try to distract with simple non-stress strategies. ....You weather this misery so well Mrs., I hope you wake up to a sunbreak tomorrow. We are here for you if you need BB company this evening....coop

[[mr...]]

Mrs...yep....the blahs with a 'stoned ' sensation and underlying touches of nameless fear and vague depression ..like the flu is going to show up tomorrow...This cycles for me too on my wavy days. Do sorry that you , who are so positive and upbeat , are under the cloud of it today.

.....It seems that there is not alot we can do to shake it when it comes around except try to distract with simple non-stress strategies. ....You weather this misery so well Mrs., I hope you wake up to a sunbreak tomorrow. We are here for you if you need BB company this evening....coop

 

Thanks Coop I'm so glad to hear of your progress in being 14 months free Blazing the trail for us!!!

 

Mrs.

[[li...]]

Just an update....I am 14 months and 11 days out. ...

......I still have on again off again sx. My new sx is bad body pain that caught me off gaurd...hard in month 12/13 and comes and goes. I believe that I am having more good days than bad. I have windows and some effortless days. Often my good /window days come in 2/3 day strings followed by a half day or 12 or so hour wave. My baseline remains at a consistent 85-95%. Most of my remain sx seem to be more physical rather than mental....however the physical sx more often than not engage my health fears. I consider the persistent health fears to be a PTSD of sorts from the heart scares and er trips during months 4 and 6. I may need to do some ' clean up' therapy for these health fears following healing.

.....I woke up great this morning with only moderate body pain. I went shopping all morning with my daughter. No anxiety, dizziness,,d/r, headache or head pressure. We were out and about doing serious shopping for about 4 hours. Usually shopping bothers my eyes and thus triggers my dizziness...not today...I know 4 hours is not a long time, but even before w/d 4 hours in my chair caning my neck and twisting and turning was about as much as I could tolerate.

  . .friends...we are getting better. I know we have months in front of us to go but...from what I am reading on our posts...none of us are where we were this time last year.

....Wishing everyone a string of windows. Our worst days are behind us...our best days are right in front of us.. love , Coop

 

Hey coop you sound sooooooo much better. Wow.... it feels like not so long ago that you started the 6 to 12 month thread and here we are on the 12-18 month thread... Baby we have come a long way.... I do not want to say it yet but I am getting this sense that I am healed -- not in the sense that I am 100% but in the sense that there seems to be some constancy in my thinking. I can make plans weeks in advance or ever even days in advance and I show up with a good attitude.

 

I had such a wonderful email sent to me just recently. It was a person that wrote only 10 posts in all and she was on benzo buddies no more than 5 times in 12 months it took her to heal. She came back and posted to say that she wanted to thank me for writing my posts. Now, I do not think that I am the warm and fuzzy type so I thought "what could I have written that touched her so much?" She pointed it out and how it affected her so positively her whole healing recovery changed with my one post. She just wanted to thank me. The moral of the story is that we post on these boards and we do not realize the impact that we have of peoples lives -- some of them that just read us and do not write so we never get to really know them -- like this lady that posted me. BB does a worlds of good.

 

I still have re-entery to deal with which is my dealing with the stresses of life. I have to reach deep into my CBT skills some days. Over all I am feeling really good. Boy how thankful I am to God to say that with certainty. We all do heal... for me it was definitely month 14 that healed me -- coincidentally the average time of healing on BB. As I write I have to figure out what month I am going on -- I think it is month 16 on the 19th of this month.

 

I know that all of you will be healing -- soon sooner than I am and some a little more. But we all will heal. Do I go through periods where I think a wave hits me -- sure --- like on Christmas week but it lasts about a week and goes away. What's life without a little spice? I long for the days where there are no waves at all for me or anyone here.

 

God bless you all. You have helped me get through the most outrageous and trying time in my life. As I start to look back it was like a distant memory. Love to all.

 

Life

 

 

 

 

 

 

 

ds,....we are getting better...

[[li...]]

Hey coop you sound sooooooo much better. Wow.... it feels like not so long ago that you started the 6 to 12 month thread and here we are on the 12-18 month thread... Baby we have come a long way.... I do not want to say it yet but I am getting this sense that I am healed -- not in the sense that I am 100% but in the sense that there seems to be some constancy in my thinking. I can make plans weeks in advance or ever even days in advance and I show up with a good attitude.

 

I had such a wonderful email sent to me just recently. It was a person that wrote only 10 posts in all and she was on benzo buddies no more than 5 times in 12 months it took her to heal. She came back and posted to say that she wanted to thank me for writing my posts. Now, I do not think that I am the warm and fuzzy type so I thought "what could I have written that touched her so much?" She pointed it out and how it affected her so positively her whole healing recovery changed with my one post. She just wanted to thank me. The moral of the story is that we post on these boards and we do not realize the impact that we have of peoples lives -- some of them that just read us and do not write so we never get to really know them -- like this lady that posted me. BB does a worlds of good.

 

I still have re-entery to deal with which is my dealing with the stresses of life. I have to reach deep into my CBT skills some days. Over all I am feeling really good. Boy how thankful I am to God to say that with certainty. We all do heal... for me it was definitely month 14 that healed me -- coincidentally the average time of healing on BB. As I write I have to figure out what month I am going on -- I think it is month 16 on the 19th of this month.

 

I know that all of you will be healing -- soon sooner than I am and some a little more. But we all will heal. Do I go through periods where I think a wave hits me -- sure --- like on Christmas week but it lasts about a week and goes away. What's life without a little spice? I long for the days where there are no waves at all for me or anyone here.

 

God bless you all. You have helped me get through the most outrageous and trying time in my life. As I start to look back it was like a distant memory. Love to all.

 

Life

 

[[Co...]]

Life,...it is always so good to hear from you. I totally relate to the BB who e-mailed you. You were a light in the dark for me. When you posted the recommendation and encouragement that your w/d specialist gave you ...about 10 months being a turning point and that everyone heals....that was a stand out moment in my ability to continue with recovery. We became a little band of cave dwellers ( remember that? ...seems so long ago and such a desperate time for all of us) You and Nova and Peace and Green and everyone else who jumped on and held onto each other, looking for the light that would lead us through that stinkin' cave. Green told us, " no body gets left behind" ...Even though I was thick in sx and unknown to me at the time, approaching some of the worst months of w/d, it was a mental turning point for me. No matter what I was going to go the distance. Having a band of buddies at the same distance of travel as me to compare progress with and give and receive support with was so meaningful. ...

.....I appreciate so much that you come on from time to time to let us know how you are doing and encourage us on...

.....It is wonderful that you are planning things out into future dates and having the ability to follow through without anxiety , panic and depression. I remember at the beginning of last summer you were incapacitated with depression. ...Stress and challenge are part of life and you have committed  to learning and utilizing hard won strategies to keep you centered. ...We have learned some important life lessons in this misery. ...You will know when the time is right to pen your success story.  .I can't wait to read it.

......Thanks Life..  for everything.  Love love to you....coop

[[fl...]]

Life and Coop, your words are beautiful, and you BOTH helped me through the nightmare.  And so did Green, and Garton and Mommy and HH and many others from here I'm probably forgetting.  Thank you all.

[[je...]]

Hi Mrs. Yep, I get the blahs and apathetic feeling sometimes too. I'll take it any day over the deep dark depression I used to get, but its still pretty annoying. Mine always comes with the no motivation and extreme fatigue.. I hope you feel better soon !

 

Hi Coop, what is this body pain you and green have talked about? I have been getting very achey lately with some joint pain, and just an overall weak feeling. Just wondering if that's what you guys are talking about. Jenny

[[Co...]]

HIJenny, yes...unfortunately that sounds right. The fatigue and all over bad...really bad muscle and joint pain. Mine has been coming and going since about month 13. It incapacitated me. I can barely stand. Lavender Epsome salts hot bath soaks help only temporarily. Joints feel paralyzed with stiffness and it feels like the flu.  except it leaves in a day or so only to come back exactly the same way a few or several days later . I had intractable back, shoulder, neck and upper arm pain.  Not sharp pain , but deep stiff muscle pain . ...Well, you get it.  It is not fun. It had me in bed for 24 hours last week and I haven't been bed for a day for at least 2 months. ...Yes, I had mild depression with it just because it hurt so much. It hurt so much it made me cry and I am well used to pain as I have had RA for about 20 years. It caught me totally off gaurd as in month 12 I thought I was feeling better. Beulah had it terribly early in her w/d. Still, it is easier than the first 12 months of w/d. I have had it probably 3 or 4 times since the beginning of month 13 so when it comes around now I know it will end. I just take it way easy...until it let's up. I did need pain relief at night because it absolutely hurt too much to sleep. Just be careful with tylenol or ibuprofen as they shouldn't be taken more than 2/3 days in a row in a given week due to re-bound pain and the potential damage they cause to kidneys and liver.I think it was Drew who said he gets headaches and takes tylenol infrequently without problems. I was taking it for body pain and headaches, but I was taking it too often and got re-bound pain/headache. 

...Well...this was way too long for the straight forward question you asked me.  Lol...sorry

.....Hope you get some relief.  It will go away and most likely it is all w/d caused. ... Take care .....coop

[[je...]]

Thank you so much for the reply Coop. Yeah, that sounds exactly what I've been dealing with and yes it comes and goes too. I notice sometimes after a long walk, I will get so stiff and feel like I walked a marathon-- so tired and weak. It makes sense now. Thanks for the ibuprofen info too, I take it maybe once a week for headaches, but honestly its the only thing that works and I never seem to have any ill effects. I will just make sure not to over do it. Thanks for everything! Jenny

[[dr...]]

All I know is every time I do anything the least bit physical my body feels like I got ran over by a steam roller.  I jogged two miles two days ago and my oh my.  Should have a just run a marathon. Couldn't feel worse.  Oh...then the nice random stiffening of my upper back and neck into a rock formation. Yay!

[[Co...]]

Drew, so sorry you are going through this too. Thanks for posting about it...Helps to know how others are getting through it...and that it is w/d....Can't believe you can run 2 miles...This one will pass too....A good summer awaits us all. ..  .I had the same ' concrete' back, shoulders, neck and upper arms.. better today....wishing you relief....coop

[[Sk...]]

All I know is every time I do anything the least bit physical my body feels like I got ran over by a steam roller.  I jogged two miles two days ago and my oh my.  Should have a just run a marathon. Couldn't feel worse.  Oh...then the nice random stiffening of my upper back and neck into a rock formation. Yay!

 

Drew, I do not dare try to run, although I would love to. But I just got back from a short walk and I feel exhausted, sooo exhausted.

 

Great to read life's post, a very beautiful post .

[[He...]]

Good morning,

I have had a pretty good past 4-5 days. It's been nice and has done a lot to restore my belief and hope in healing. My window closed some last night and I woke up several times from about 2:00 on with anxiety/fear. I feel exhausted, nervous, and bluesy right now....I wish I could get a sub for today and stay in bed for a while more. My head is clear and all my anxiety is zinging around my rib cage and is centered in my gut. <sigh> I'm so burnt out by the length of this process.

 

I have to figure today out though, wave or no. My older daughter has a game and she is also the junior class Homecoming princess.

 

I've still not heard anything from my 24-hr halter monitor heart test. Hopefuly I'll hear something today.

 

Ok, time to drag myself into the shower and start getting ready for the day. I think I'll pass on dressing up for the Homecoming theme of the day, though. I've done about 1/2 of the dress up days this week, but I don't think I have it in me today.

 

I hope you all have a good day! Lots of people are so close to healing...it's exciting!

Love,

HH

 

 

[[mr...]]

Good morning,

I have had a pretty good past 4-5 days. It's been nice and has done a lot to restore my belief and hope in healing. My window closed some last night and I woke up several times from about 2:00 on with anxiety/fear. I feel exhausted, nervous, and bluesy right now....I wish I could get a sub for today and stay in bed for a while more. My head is clear and all my anxiety is zinging around my rib cage and is centered in my gut. <sigh> I'm so burnt out by the length of this process.

 

I have to figure today out though, wave or no. My older daughter has a game and she is also the junior class Homecoming princess.

 

I've still not heard anything from my 24-hr halter monitor heart test. Hopefuly I'll hear something today.

 

Ok, time to drag myself into the shower and start getting ready for the day. I think I'll pass on dressing up for the Homecoming theme of the day, though. I've done about 1/2 of the dress up days this week, but I don't think I have it in me today.

 

I hope you all have a good day! Lots of people are so close to healing...it's exciting!

Love,

HH

 

HH,

 

If something was wrong with your holter monitor test, they would've called you IMO, no news (or delayed news) is good news

 

Enjoy your day, dear. I've had some of that "bluesy / fear" type thing recently. But just now, I had some GOOD feelings - hard to describe it, but it is higher than they've been...so my body is raising to a new level I believe it. I think, for me, sometimes an "uptick" in symptoms means more healing, and better baseline. (Hooray!)

 

Mrs.

[[Sk...]]

Good morning,

I have had a pretty good past 4-5 days. It's been nice and has done a lot to restore my belief and hope in healing. My window closed some last night and I woke up several times from about 2:00 on with anxiety/fear. I feel exhausted, nervous, and bluesy right now....I wish I could get a sub for today and stay in bed for a while more. My head is clear and all my anxiety is zinging around my rib cage and is centered in my gut. <sigh> I'm so burnt out by the length of this process.

 

I have to figure today out though, wave or no. My older daughter has a game and she is also the junior class Homecoming princess.

 

I've still not heard anything from my 24-hr halter monitor heart test. Hopefuly I'll hear something today.

 

Ok, time to drag myself into the shower and start getting ready for the day. I think I'll pass on dressing up for the Homecoming theme of the day, though. I've done about 1/2 of the dress up days this week, but I don't think I have it in me today.

 

I hope you all have a good day! Lots of people are so close to healing...it's exciting!

Love,

HH

 

HH,

 

If something was wrong with your holter monitor test, they would've called you IMO, no news (or delayed news) is good news

 

Enjoy your day, dear. I've had some of that "bluesy / fear" type thing recently. But just now, I had some GOOD feelings - hard to describe it, but it is higher than they've been...so my body is raising to a new level I believe it. I think, for me, sometimes an "uptick" in symptoms means more healing, and better baseline. (Hooray!)

 

Mrs.

 

HH, I think I will second Mrs on this.

 

Mrs, I too have a few good feelings during these days, it's not all back. They make an appearance, so to speak.   for the moment the bad thoughts still run the show, but the good thoughts are there, they really are. So I know I will be seeing so much more of them in the future and may I just say, high time too !!

 

Now, if you excuse me, I have to go on being tired from having been too tired all day !!!  Tired is the word of the day, it's brutal.

 

Take care guys, thanks for posting so many nice things here, I too  think a beautiful summer awaits us.

[[Co...]]

HH..thinking of you today. I agree with Mrs. ..if there was a problem on your Holter monitor, you would have been notified. All of your tests have come back healthy and that is such a good indication. 4/5 good days in a row is a good string of improvement. I have not had 4 days in a row yet, but hoping for that soon. It is hard to see your windows dim out.. especially this far out. It always makes me depressed. Are you noticing a quicker recovery from the wavy day? Mine are beginning to last a day or a little less, but on a wavy day I can feel almost as bad as I did in acute, although some sx have fallen away. Fatigue, body pain. and health fears still plague me on bad days.

.....HH, I hope your wave lifts before the day is out. Wishing you better sleep tonight and sunbreaks that open up some more windows. ....coop

[[dr...]]

take it from one heart freak to the other...they would call you. no news is good news in the heart world.  anyting serious they would have you in immediatly. 

 

I am feeling okay.  my rational mind is ruling over the irrational so I am able to pass the days with symptoms.  It can be uncomfortable but it is tolerable. 

 

Hope everyone has a healing day.

[[be...]]

Thanks Beulah, ....I agree there are just times when you have to do something to sleep or get some relief from severe pain. I think the recommendations of the article leave some latitude for some use of these drugs. I have been successful in managing RA pain with yoga and hot soaks with Epsome salts. So I have avoided ( to the frustration of my RA doc) the big dangerous RA drugs, although I took plenty of Tylenol 2/3 or Ibuprofen with codeine. Now I am worried . I dropped the codeine , tylenol whend I went on the ativan because the ativan pretty much masked all my RA pain. I dropped the codeine without any problem, but know I know the ativan also masked any codeine w/d.  I may ask to have my liver and kidneys evaluated for health.  Although that has been about 4 years ago that I dropped those ...ironically, because the atitan was such good pain relief...man o man...Even when I told my doctor that I thought the I uprofen raised my b/p he didn't believe me. I also gained a lot of water weight on the Ibuprofen.

  ...Well, having said all of that....If nothing else, I have learned to use natural remedies and self care as a front line defense for pain, w/d and fatigue. I have also learned to eat very healthy. Nearly Paleo with modificat ions for vegetarian and allowing some diary...so pretty much Mediterranean /Paleo..lil.....So I have learned a lot on this crazy painful travel.

.....How is your leg pain. I remember so clearly when you couldn't walk and had so much pain. Mine came on late..month 12/13....so it caught me off guard and scared me

.....thanks so much for your reply Beulah...I think of you often We were on the boards early on ...14/15 months ago!  Boy, we have been at this for so long..I hope you are feeling mostly healed.  Love to you Beulah.....coop

 

Hey Coop, my leg pain is still with me but getting better. They still feel tight with squeezing most days.

I'm sorry you have the RA pain to deal with on top of everything else.

I'm also experimenting with the paleo diet and I'm hoping I can stick with it. The crazy withdrawal cravings are making it hard for me to stay on any diet. Early on I didn't have sweet cravings much, but now they are tenfold.

Yes, we have been at this for sometime and this time next year ...hopefully an end . While I do have a lot of healing I also have many symptoms that like to rear their ugly head and slap me down. You know how it goes...up and down...back and fourth.

I can't wait till spring!!!!

Take care my friend.

Hugs to all.

[[dr...]]

I had a terrible time trying to stay on a paleo diet or anything extremely low carb.  It made me leg and muscle pain way worse.  I mean one of the worst bouts of pain and jelly legs ever.  As soon as I changed my diet back they improved dramatically.  I also had some issues because low carb/paleo affected my anxiety levels.  Apparently it can change serotonin levels.  If you google leg pain/weakness and anxiety with diet it will come up.  Not saying anyone should listen but just beware if you notice a change.

[[Co...]]

Beulah and Drew, ..the nutrition thing...kind of a crap shoot huh? ...I found the Paleo a little too restrictive...and I really hate cauliflower bread..lol. I have found that for me, the Mediterranean approach is easier to stay with, although I go easy on the bread carbs and try to stick with the whole grains. ..If you like Pintrest ( my guilty distraction after I was able to concentrate again) you can find tons of recipes for both and I have boards there too. I love that the Mediterranean allows a little wine and a little pasta..and it's all so beautiful. Basil and tomatoes with a little ramano...yum. ...I also go easy on the diary but I don't have any intolerance. ...I have treats ( no processed fast food, but a little dark chocolate and biscotti sometimes on the werkends)... I eat tons of wild salmon but am pretty vegetarian other wise. ....

.....Beulah , it helps me to know that body pain can last for awhile. I am pretty much where you ..  much better with ups and downs. ...My RA pain is practically a piece of cake compared to everything that w/d had been . .but I have 20 years of learning how to manage it and have only been in my chair for about 5 years ....We are going to get to the end of this. ....Drew, you are so upbeat .. and I see your sense of humor underneath all of the healing....I love it that you are on here with us...

.......have a good day you guys..  off to take my dog out...always feel better after I have been out.  Hopi g for sunbreaks. ..coop