12-18 month support

[[je...]]

Mrs 

[[pe...]]

Nova, yes. Validation, safe space, memory.

Coop,yes. Validation. Abbey. Love.

 

So blessed to have you on this trek.

 

[[dr...]]

At the theater and my visual aura just showed up. Argh!!!!!!!!!!!!!!!!!!!!  Can't I get one day free of something!

[[Co...]]

Nova, hope you are feeling a little bit of a bounce. Mercy, you need some let up of rain and snow...Meatballs..you make.the best things...Wishing you good rest tonight and for heaven's sake...some sun tomorrow....coop

[[Co...]]

Dtew, I will have you know I wrote that "long" post through huge dilated eyes...lol

....Nooooo ....does an aura always result in a migraine? ...Man, I hope it does not materialize. Does anything stop it at the aura stage? ...Sounds like you had a decent work day...including the wonky third meeting. Isn't it great to have a sense of looking forward to something you love...have a good night Drew.. no migraine....coop

[[Co...]]

FJ....nice to see you here again. You always bring forward such good topics for thought and reflection.

...How is your ankle now...and how are yourvdays?...Boy, I can't wait to read your book...

......You are sounding good....and strong.....coop

 

 

 

 

 

[[Co...]]

Sky.....so happy to hear that you had a better day. ....You certainly have it coming. Keep it going for tomorrow. Wishing you long good sleep....coop

[[Mo...]]

Hello my friends,

 

I'm sorry you are all still suffering but I'm sure if I read back thru the posts there would be lots of progress.  It was time for me to come back and find support.  Thank you all for being here.

 

Quick recap on my s/x.  After vaca last July I was plunged into acute.  All new s/x not experienced during taper or the months after.  I started have hot flashes that danced like hot oil along my face.  They would hit every 2 hours nonstop with a severe feeling of doom.  I also began experiencing spinning when my eyes closed or had a mental picture show going on when I closed my eyes so it was as if they were still open.  There were also sparks that would flash in the upper right of my sight.  I had no sleep, no relief... It was horrible. Relief arrived in November after Mrs suggested I take 1000vit C daily and Omega.  It took two weeks to kick in but I was suddenly free of the hot flashes and spinning sensations.  My mind and body calmed down and I was suddenly able to function at a mostly normal level.  I also experienced a large weight gain.

 

Since then I have been symptomatic but my ability to function stayed at a normal level other then some upticks here and there.  I physically shut down around 7-8pm now.  Instead of 4:30pm. If you aren't fed, bathed or put in Jammie's by 8pm you have to wait until tomorrow!  lol

 

In February I experienced a month of 'shrewness'.  No patience, mean to hubby and kids.  Not pleasant to be around at all.  One day I found myself bitching hubby out and I stopped.  I apologized for being a witch and told hubby to hang on and poof it was gone.  The weekend before 'Witchy Poo' disappeared I demanded hubby go looking at houses... Poor hubby.  The cool thing is we found one!

 

Fast forward, we put a bid in and I'm plunged into acute s/x again.  Coincidence or too much excitement either way I'm suffering.

 

Sensations of not being able to breath, terrible gripping sensation around my neck, headache, the horrible morning funk came back, chest pain like and arrow has pierced my boob, ear pressure, weird hip pain, bands around head, tingling nose.. You get the picture.  I've got myself dying atleast 2x a day.  I'm havjng a treadmill on the 1st.  I assume if everything goes away when you lay down and zone out then it's just a brain storm.  I'm trying to deal with whatever torment my mind finds to wake me with at 1-2 or 3am.  Right now it's home stuff, safety issues, mostly the unknown world of being a home owner.

 

I'm still taking my supplements daily.  My s/x are not as horrible as I've had but it was disappointing to find myself back.  Yes, lots of healing but still suffering. 

 

It's good to find you all again.. Hugs

MommyR

 

 

Sent from my iPhone

[[je...]]

Hi mommy,

Great to hear from you again. Sorry you are having a rough time, but congrats on the potential new house. I just noticed you are 16 months out, and I think most of us if not all of us would agree that is a tough month. I spent 3 weeks in acute around the 15/16 month mark. Hang tough, it will pass and you'll feel better. Probably too much stress on your plate too. Great to hear from you, jenny 

[[Mo...]]

Thank you Jenny!  Yes, I assume it's just too much going on. My plate gets full quickly.  I'm hoping this goes as quickly as it came but the move and leaving the house I went thru taper in is hard for me.

 

I am looking forward to a new beginning in the new house. 

[[No...]]

Hi Mommy ... good to hear from you ...

 

Wow ... a new house, a new beginning ... to paraphrase ... one box at a time ...

 

Be Well ...

[[Mo...]]

Thank you for the welcome dear Nova.

 

I'm sorry you were having a rough night.  Meatballs can do that.  What's that song.. On top of spaghetti, all loaded with cheese... Some sneezed.. It fell on the floor and rolled out the door...

 

A very upsetting event for sure! lol

 

It's so strange to be dealing with this again.  Waking up to a pounding heart and lovely lower back pain.  Aargh.. The grinding sensation thru my body is unpleasant.  I am amazed that chemicals in our brain can set of a cluster of s/x like this.  The vice around stomach really hurts.

 

I emailed Dr Jennifer too. She has obviously suffered long and hard, but gives me great comfort to know it ebbs and flows. 

 

What can I say that's good?  Yesterday I rode my bike 3 times.  We have a heat wave out here.  I took a few months off from walking at the end of last year trying to get rid of the back pain I had then.  It worked. When I went to start walking again my knee decided to hurt.  I was diagnosed with patella tendon syndrome.  Basically just needs rehab which I go to 2x a week.  The uptick in s/x has me desperately wanting to get a good walk in.  I remembered all our talks about bikes so I dusted off my Townie and put some air in the tires. 

 

It felt really good to ride around.  Lifted some of Ick off of me.  When my oldest got home from school we rode to the park and then later around the neighborhood.

 

I had an MRI on my back.  Oh Lordy... Have you been in those contraptions with crazy brain?  I was shocked to find I couldn't do it.  Had to reschedule and bring my mom with me.  Everytime they would say how long the next picture would be she would tell me what to count to and then tap my head as we counted together.  I kept a washcloth over my eyes the whole time.  Gives me the heebies just thinking about it.

 

3:49am... I am hoping by 5am I will be asleep again..

 

 

 

[[No...]]

MommyR ... yikes ... the vibrating mri coffin ... great idea of having someone keep time by tapping on your forehead ... gonna use that or recommend it ... as my wife keeps reminding me ... "it's all about perception" ...

 

If you are up to it ... and would like more "information" ... Gabor Mate's book "When The Body Says No" ... is very interesting ... nothing specific to us, and a wonderful explanation of body processes ... the immune system, the hpa axis. hormones, all that funky stuff ... and the inter-relationship with emotions ...

 

Hope you get some more rest ...

 

[[Sk...]]

Thank you for the welcome dear Nova.

 

I'm sorry you were having a rough night.  Meatballs can do that.  What's that song.. On top of spaghetti, all loaded with cheese... Some sneezed.. It fell on the floor and rolled out the door...

 

A very upsetting event for sure! lol

 

It's so strange to be dealing with this again.  Waking up to a pounding heart and lovely lower back pain.  Aargh.. The grinding sensation thru my body is unpleasant.  I am amazed that chemicals in our brain can set of a cluster of s/x like this.  The vice around stomach really hurts.

 

I emailed Dr Jennifer too. She has obviously suffered long and hard, but gives me great comfort to know it ebbs and flows. 

 

What can I say that's good?  Yesterday I rode my bike 3 times.  We have a heat wave out here.  I took a few months off from walking at the end of last year trying to get rid of the back pain I had then.  It worked. When I went to start walking again my knee decided to hurt.  I was diagnosed with patella tendon syndrome.  Basically just needs rehab which I go to 2x a week.  The uptick in s/x has me desperately wanting to get a good walk in.  I remembered all our talks about bikes so I dusted off my Townie and put some air in the tires. 

 

It felt really good to ride around.  Lifted some of Ick off of me.  When my oldest got home from school we rode to the park and then later around the neighborhood.

 

I had an MRI on my back.  Oh Lordy... Have you been in those contraptions with crazy brain?  I was shocked to find I couldn't do it.  Had to reschedule and bring my mom with me.  Everytime they would say how long the next picture would be she would tell me what to count to and then tap my head as we counted together.  I kept a washcloth over my eyes the whole time.  Gives me the heebies just thinking about it.

 

3:49am... I am hoping by 5am I will be asleep again..

 

Mommy, how are you ? I mean, yes, I read your post, I know how you are doing. What I meant is, nice to see you !

 

Nova, nice posts you wrote.

 

Yesterday, I was feeling awful and so I read my favourite success story, by lost dog. I love how he explains that he felt that these  months were the hardest.

 

These are hard days . Sunday I am going to my mother's and I am agitated . She has to put a cast on her arm. I wish there were not a calamity every time I visit her. I hate  how these holidays, always ends up being a lot of work for me.

 

She hurt her arm because our dog, has to have all her toys on the floor.And believe me, that dog has tons of toys. I have fallen so many times. It was an accident waiting to happen.

 

Excuse me for the rant.

 

I wish everybody a better day of healing. 

[[No...]]

Hi Sky ... hope you have a good day ... rant away ...

 

One of the pleasures of this thread is reading all the creative rants ... maybe someday we can all get together and shout and clap and dance and just make an outrageous amount of noise chanting our rants ... 

 

Would be good for the soul ... 

[[dr...]]

Hi all...my visual aura turned into a mild headache but I have nothing to do for three days so I'm all about accepting the symptoms and putting no pressure on myself. I'm assuming my frequent increase in migraines is due to this process and I'll get through this.

With my renewed attempt at symptom and this whole process of acceptance I'm going to try and stay off the board for a bit. I feel I need to try and change my focus away from this being all consuming.

 

I know you all understand and I have nothing but love for you all.   who  Knows I may be back on tonight. 

[[Co...]]

Drew, it's good to take a break and look at a different landscape..  We will be thinking of you and wishing you very good healing.  Love to you....coop

[[Co...]]

Sky...bravo for you for going...rant away friend....this is the place for all kinds of rants and saves our families from rant burnout....and gives us a place to be heard without judgement or doubt. ...Enjoy your visit and watch your step. ...coop

[[Co...]]

Hi Mommy R.  So nice to see you again. A new house...exciting. ...I am looking forward to reading your posts....It's been a long trek, but we are all so close. Somebody posted a quote that confirmed what many of us are feeling....the last leg of this can be the most difficult after early acute....often resembling acute again. I often lose my faith in this process....it is everything I read here keeps me going....coop

[[Co...]]

Just a quick update...

....My eye exam was so easy ...in spite of all the anxiety and catastrophic imaginings which are my dragon to slay. I cop to taking 6 mg of atenolol before. The positive of the very good visit is that it has encouraged me to schedule my yearly exam and ...and and and.. a visit to the dentist if only for an initial consult....take that medical phobia.. just small gravel in terms of throwing rocks at dragons , but ya gotta start somewhere.

.....More good encouraging news...this morning my wave not only lifted.  it lifted to 3 hours of effortless mind...reminding me of where this will all end up. That term of " effortless mind" will always be Lifeforme's inspiring description...I think of him every time I use it.

.....The sun is out here...warm and uplifting. The dog and I have been our 3 times just smiling at the early grass widows.

.....Thinking of everyone....Wishing all an uptick in sunbreaks and windows. ...coop

[[je...]]

Coop- I'm so happy for you that everything went well at the eye appt. And now your making more appts? Good for you! I'm a little jealous as I have such a fear of anything doctor related-- sends me into panic overload. Just the thought of ever having to go to the doctor in the future makes me break out in a sweat and start shaking- I'm not exaggerating...  So happy you had a nice window, you deserve it. Hugs, jenny

[[Te...]]

Hi Coop and everyone.....

 

I know I dont post here often....not great at remembering everyone....So forgive me

 

it's nice to know I'm not alone visiting doctors......and MRIs without benzo's is hard....I had one last year ...I had them put in a cd about positive motivations.....I thought I couldn't breath inside...must of been the longest ever panic attack.....then to find out they all listens to cd it was quite embarrassing...but I made it without any meds which I thought was awesome!

 

Having rough week....does anyone ever get muscle cramps in legs when sleeping? Had one last night it woke me up...very painful.....had finally fallen asleep...to wake up to that.....ugh

 

Hugs! TM

 

 

[[Co...]]

I know exactly how you feel. .the new appointments I made are for very simple blood draws , ultrasounds and only talking to the dentist....little tiny baby steps...I could never in a million years get into an MRI like Mommy did...my heart literally flutters when I imagine it....

...Is your wave still gone.. I hope so Jenny, you put in a looong 6 weeks.  I hope you have a good weekend with your little ones.  coop

[[je...]]

Coop- I'm in a mild wave again.. Started last night with horrible insomnia and nerve pain that had me wishing I was dead. The pain sometimes is just too much. Anyhow, the pain is better now but still here. Its so funny how when I'm feeling good I think it will never end and I forget all the pain Ive been through and then another wave comes and I'm shocked that I'm still dealing with this... You would think I would know better and that I would expect a wave, but no I'm always shocked by them 

[[Co...]]

Jenny, I could have written your post myself.When I am in a window it's like none of this happened...especially in an effortless mind window. I can't even create some of the scary thoughts that torture me in a wave. I guess that's the good news, when we are done with this we won't be able to remember a lot of it.  When I am in a wave I can't recall how great life is in a window. I have to go to my window journal and read how normal I felt.

....I am so sorry you have nerve pain. I haven't had to endure very much of that. I know  Beulah really suffered with it.I do get restless legs sometimes in the middle of the night and that is miserable enough. I hope your wave continues to lift entirely to a window.  I lose my belief sometimes that this will really end. I have been reading HH's posts. She turned right around at month 22.  ...I think we are going to get there too...but I am pretty worn down by it...Sometimes acceptance really helps me, but sometimes when I see everyone else l8ving full lives I really resent this. I need to see a new success story pretty soon...maybe HH is close.

    My effortless mind window is already dimming, but it is not all the way closed.  pretty close to baseline.  I will take it for now, but pretty soon I want the closed deal. ...I hope you sleep tonight...that will help ...sending you hopes for a full window....coop