18 - 30 Month Plus Group

Hey guys,  In desperate need of good experiences with the barium swallow study! Going in today and am NOT doing well.  I want to crawl out of my skin run and hide! I am absolutely freaking out....

I have this fear of swallowing anything any medical professional gives me after this experience.  I am so afraid even if I don't have a wretched reaction it's going to appear that I am having on. I am afraid I am going to hive out from the stress and have breathing difficulties anyways so how in the world am I going to know if I am actually reacting to the crap?? 

 

Sorry I know I sound like I am about 5 years old but OMG I am FREAKING OUT..,

Jenn,

 

You are going to be fine.  This is what I do when I have an upcoming event that I'm not looking forward to:  I think about the hours AFTER the event and how I got through it and am back home safe and sound again.  This test will be like many you've had before.  You will do it and they will find nothing wrong and you will be relieved it is, once again, nothing but recovering from drugs altering your brain chemistry temporarily. 

 

Your symptoms scare you.  Throat closing, GI issues, anxiety on overdrive.  You will settle down.  Your brain is healing, sweetheart.  You've seen the signs.  You are close to the end.

 

Love, Sofa

Miss Jen, I am 23 months out and still freaking out too. I have had the barium swallow study before and I understand how you feel. The stuff is nasty but it really isn't as bad as you think and if anything was to happen believe me they have seen it all they will help you. But I am betting once you get there and are down to it you will just do it and it will go good. Sorry you have to do this. I'm with you I hate doing the medical stuff. Good luck and know that we are all thinking of you.

 

Love Jackie

Hey Jackie...no freaking out...you are one of calm people voices.

 

Miss Jen-you will do it and be fine just as you handle everything else.  We may worry about things but what we are able to actually do is amazing. 

 

I came into the office today.  I worked from home all last week so I had to get in here or I start fearing I will become completely agoraphobic.  Wave still here.  I literally woke up every two hours from vivid dreams last night.  The big positive was that they were mostly pleasant dreams and not night terrors like before.  I am tired but doing what I have to do.

 

I am using a new affirmation "nothing about these sensations or feelings is dangerous"      I also just started saying out loud "stop" whenever I catch myself having a what if thought.  I find my mind does hundreds of these without me even noticing so I am working on raising my awareness and using CBT methods to change my thought patterns. 

 

Drew I wish I was always a calm voice, I wasn't this morning but I'm trying to cope once again with all of this.  I have been saying "Even though I am having anxiety over ? I deeply and profoundly accept myself" I heard this or read this from somewhere so I've been saying it a lot lately.

 

I like yours too,

"nothing about these sensations or feelings is dangerous"

My problem isn't that I think it can hurt me, its more I'm just scared and afraid of being judged as not in control. I know I'm weird.

 

Love Jackie :smitten:

We are all weird.   I have a ton of anxiety at work today.  I am also saying "This is good practice to just sit and be with it.  This is my coping skills I need to work on"

Good Morning, Windows are so important.  The relief is wonderful. It lets us know that our brains are capable of recovering, and that we are healing.  I am in a pretty good wave this morning but usually feel much better by 3 in the afternoon.  My bigee for the day is that I called and made an appointment for a consultation at Curves for tomorrow.  I don't know much about strength training but want to investigate.  I am also considering finding a beginning yoga class.  My worst remaining symptom is rigid muscles in my legs.  Drew, you mentioned symptoms reducing by 90 % in five minutes.  That is what happens with my legs.  I walk slowly in considerable pain and then within a minute or two, am walking normally and pain free. 

Jen, good luck with the barium. Want to say please don't worry, but that seems pointless. You are made of strong stuff and will be fine. Sorry I'm not much help.

 

Wave continues after the break I had on Friday. Went to bed fine and got up to a weekend of hell. Pushed through though and have had another awful day. Spoke to Ian and the most significant thing he said was that my recovery hadn't started yet and I'm still in WD. Yes we get windows but when recovery starts we will really know. don't know if that makes much sense to anyone and i can't remember much else at the moment as I have so much fog also I've felt quite depressed recently and exhaustion like nothing else. Oh, i've just remembered, he said it often can be really bad at the end............ Lets hope and pray

That doesn't make sense to me Marj.  even though I feel crappy in this wave it is still much better than a year ago.

Idk, I have been really bad today and when it's like that I feel  I'm worse and I could relate to what he was saying, especially in respect to his own experience. He, like I didn't have that acute, and actually it started to get worse around 6 months off for me and it was the same or him. He said he just seemed to get worse and worse until he was ready to give up and then it just started to get better.It's like it peaked. He has said this quite a few times. He also said we are so mentally and physically exhausted which again I can relate to, that we are beaten up. I suppose we have had to endure more and more as time goes by and that takes it's toll. Also the longer it goes on the more depressed/defeated you can become. It depends on the person I guess. I suppose I am better than a year ago, however it can still be really intense as in racing mind when negative stress comes along and the lingering effects of it. I just asked him about my recovery and he said I was still very much in WD and that when recovery really starts you know. The thing is we are all so different, no one size fits all like other recoveries and the non linear thing. He has told me about one man and I have heard this from another BTP person, that was absolutely terrible all the way through and then out of the blue everything just went. They were amazed and the guy traveled down from Scotland to thank them all personally.

 

I don't want to confuse anyone by how I relay what we talk about. I hope that is not the case and at the end of the day we get better. I did ask him if he has known anyone who did not get better and he said no one 

So Marj.....did Ian say some get worse as time goes on before getting better?

Anyway...this is how it's going for Me.....since 18 mos.....worse....but my mind seems to be doing somewhat better....even with the huge amount of pain....but I still have bad mental like overload days..

Just wanted to say I really appreciate you sharing your talks with Ian.....it really means so much to me....to hear your conversations.....thank you so much...

 

Hugs to everyone......

 

Jen....the Barrum is ok....no worries....the procedure was really fast.....but I understand how you feel....I should do a scope on stomach....scared...this has be done before April......grrrr

 

TM

Oh Marj...I didn't mean to be a pain in the ass questioning you.   I really love all the updates you post as those morsels hope me through bad days like today.  Hope you feel better as we all should.

Oh Marj...I didn't mean to be a pain in the ass questioning you.   I really love all the updates you post as those morsels hope me through bad days like today.  Hope you feel better as we all should.

 

Yeh Drew, you big pain in the goolies 

 

 

Seriously, I get what you were saying. We are all looking for  a way out of this and when something doesn't fit with us we get all OMG (I do, big time). I've remembered where it came from now. I unwittingley read where someone said we can get worse as time went on and Ian said there was an element of truth in that and then he went on to explain as above.......

 

Yes, today has been a toughie but we are doing it. 

 

 

TM, Yes that's what he said. Good news your mind has calmed 

Jen, good luck with the barium. Want to say please don't worry, but that seems pointless. You are made of strong stuff and will be fine. Sorry I'm not much help.

 

Wave continues after the break I had on Friday. Went to bed fine and got up to a weekend of hell. Pushed through though and have had another awful day. Spoke to Ian and the most significant thing he said was that my recovery hadn't started yet and I'm still in WD. Yes we get windows but when recovery starts we will really know. don't know if that makes much sense to anyone and i can't remember much else at the moment as I have so much fog also I've felt quite depressed recently and exhaustion like nothing else. Oh, i've just remembered, he said it often can be really bad at the end............ Lets hope and pray

 

Marj, this is very interesting indeed. I think I know what he means, but I am not sure. I  think I am still in wd then. It wouldn't be so hard for me to post here or keep up with everything if it weren't the case, you know what I mean ?

 

I know I am better, but it's just b ecause of me doing so much more than before but some days are really hard.

 

Speak soon everyone, I read all your posts, but comment little. YOu r posts make my wd easier.

Happy 2 years to me.  I really can't believe it. Honestly!  Did I think I would be here still after this long?  No way.  Have I gotten better?  Depends when you ask me. 

 

I was feeling a good baseline shift a couple weeks ago but then came down with a big cold that I am just getting over.  Here is the thing.  I have gotten better during daily life stuff, my main symptom left is extreme social anxiety pretty much anytime I need to have an event or anything really.  Meeting at work, dinner with family, going to a store, etc.  Still really bad.

 

However, something that has come back is exercise.  And not just low intensity stuff.  I have been back at swimming some pretty high intensity workouts at around 3200m or so a workout.  I haven't done that (or wanted to) in over a decade.  It is making me feel good until this last weekend I pushed it too hard after being sick and it set me back big time, but I am sure this will pass. 

 

Anyways, it is a mixed bag.  I really hope that some of the anxiety can decrease pretty soon.  It has been a long slog so far.  I am sure all of you understand.  Ready for another year of ups and downs, but hopefully more ups.

Aquaval,  congrats on the two years! I just hit that mark this month as well. And totally understand wanting and waiting on those darn anxiety levels to drop! Or better yet vanish

My daily levels have improved but can still very much so ramp up at any given moment! 

 

Marj, So sorry about everything! Sending huge hugs your way! I totally get what Ian is saying and thank you for sharing. My naturopath has said the same many times to me! Idk if it makes sense to everyone but as long as we are going through these ups and downs / waves and Windows I was told we are very much so still in withdrawl.  With some having hours, days, weeks, maybe even a month of better to not so great.....  That whole darn non linear crap!  Even with baseline improvements ect.. We are still in the thick of it. At least that's how it was discribed to me. :'(. But, it was also described to me there is a huge difference Btwn acute and post acute withdrawl idk.  I don't know if anyone truly gets it or not..  It's just a big hot mess.....

 

Drew, so sorry your still getting hit hard by the waves glad you got a half day of relief. It does help to have a glimps of Hope.

 

Sofa, thank you so much for the beautiful encouraging post! I really needed it. Hope your getting a sun break today!

 

Jackie Brown, thanks for the response boy did I need the courage and reassurance! And yes that crap was wretched!

 

 

Oh thanks Jen,

 

I will catch up later as I'm a total hot mess. Just finishing work, can't breathe and have to take my son to his running club. My mind has been sending me nuts all day. I'm so full of fear, this is crazy 

Well my barium swallow was definitely a event. 

 

I had a rather large cup of sleepy time tea before going! I actually asked my husband while waiting if it would be completely inappropriate for me to curl up into a ball on the waiting room floor and start crying

 

Well they let him come with me which was wonderful as I was to nervous to be able to really grasp what the doctor was saying at the time.... 

Results were no red flags! But a few mild/moderate things. 

I have a hiatal hernia. Small but there.  Coop, we really seem to be quiet the same! My naturopath has told me this for years. But seeing it on the screen was different than a I am pretty sure!

They could also see my esophagus which was great because I have been very frightened by what has been happening to the lining of the esophagus with all of this reflux/ GERD.  The doc performing the test said he didn't see any big red flags, tumors or lesions. BUT, I have to get this under control so nothing worse develops as the esophagus isn't capable of handling the acid like the stomach is.... 

He could see the food wasn't going down like it should how it was going down a bit but then sitting in the esophagus.  One thing that really was interesting to me was he could see my esophagus muscles spasm, and the throat just as the ENT said when he scoped the throat.  I am holding on to the hope that when all these muscles calm the hell down I will have a easier time with the strangling sensations/ closing sensations/ and the reflux.  I truly believe these muscles are directly related to this withdrawal. What do you guys think...??

I am waiting on my GI specialist to call as they were sending her all the results...  Hopefully she agrees and doesn't see any red flags and I can give this awhile to see if it corrects some of itself the more I heal...  And put off that endoscopy scope for awhile. As anything invasive plus withdrawal sound too much.... 

I have been dealing with the chest squeezes and strangling sensations a bit better today so all and all worth the test! 

Aquaval, Two years means your are that much closer to the finish line.  Miss Jen, the non linear healing is really crappy !  But knowing we will get over this keeps me plugging along.  I look at some of the poor people just starting their withdrawal and I know how much ahead we are.  Sofa,  Your posts are so positive, I feel better just reading them.  Hugs, KB

Miss Jen,  Glad your barium swallow is over.  I also have a hiatal hernia and have had several barium swallows.  Can you feel food sometimes just stick in one place for a bit ?  I had to learn to chew my food really, really well, and drink a lot of liquid while I eat.  And also I am supposed to eat more smaller meals rather than a large one.  Sorry you have the hernia but hope the test alleviated fears of a more serious problem. 

Congrats on the two year mark Aqua!!!

 

Jen-it's done!

 

I'm home today. My breathlessness/palps came back at night which is rare so I knew it was migraine time as I also had eye pain.  Got my 3am headache and relaxing at home as I took day off. Ugh.  Left a message for Doctor because he said he wants to increase propranolol if I get headaches.  Current,y tolerating it well.

Glad you're feeling better drew. I've had some head stuff the last few days. The pound heart stuff in my temples is back and my sleep is a little disturbed. Waking up at 5am again. Still all in all not terrible like it had been.

 

Hope everyone else is doing ok. Glad you got the barium swallow Jen. Hopefully it will help sort out some of your digestive issues.

Hi Buddies,

 

Boy this is a trek through hell!  No wonder people feel reborn when they are on the other side.  Our journeys are completely unique, but we spend so much time trying to see similarities because we want to believe and envision this is coming to an end.  If we could just find someone ahead of us, or alongside us, suffering the same symptoms and starting to see improvements, we know we'll make it too.  And we will.  In our own time, in our own healing curve, with our own individual symptoms, without rhyme or reason or pattern, we will all heal.  It is the ONE thing we all have in common.

 

Love, Sofa

Sofa,  What a wonderful post ! 

 

You're absolutely right Sofa!

 

Some people have windows and waves, while others have symptoms till they disappear. No rhyme or reason. We all get better though. I have no doubt.