SelmaLady: How do I do this?

[SelmaLady]

thanks,Selma & luv-love you both XOXO

 

today was my daughter's birthday and I'm in a bad wave-help!

 

hoping & praying things get better quickly for all of us. xoxo

 

DS,  I know how painful it is to have a what should be a day of joy and happiness be taken away by a CNS that just won't allow any kind of celebration.  And I know that we feel as tho we are letting down the ones we love by being so ill.   Somehow it seems that we should be able to "pull it together" when we absolutely have to and there's no way to do that.  Heartbreaking and no way to really make it it ok.   But as long as they know that we love them, that we care its their birthday and that in time we will be able to participate, then I think that's all we can give.  There are so many of us going thru the this grief....  (((((((((((((((((Hugs))))))))))))))  

[SelmaLady]

Love you too. It's taken some time, but I am slowly managing to settle down.

Good!  So painful to be amped up and unable to calm ourselves.  Praying that you are able to rest well tonight, Luv.

[Pugknows]

((((Selma))))

 

Such a caring and compassionate person you are, always reaching out to others while in the midst of your own suffering.

 

Please lean on us whenever you need arms to hold you up or shoulders to cry on. We will row the boat through the waves that crash around you, just as you always do for us when we are too sick to pick up the oars some days.

 

You are a blessing from God and a sweet soft voice in the darkness on this forum. I have cried many times, as I am doing now, reading your gentle and comforting posts to everyone on this site. Never any anger or bitterness, just love, compassion and faith in God that He is always with us, guiding us with His light to freedom.

 

God bless you, Selma. God bless you for this emotional moment you've given me that reminds me, as long as there are people walking on this earth like you, I want to be alive.

 

We will beat this beast together. No one will be left behind. I will stay here until every last one of us is healed and ready to wave goodbye and good luck!

 

Love, Pug

[SelmaLady]

Love you Pug.  Your posts are such blessings too and many, many times your comfort and even humor bring me out of some bad places.  Thank you for your loving words.

[SelmaLady]

Yikes.  I decided to look through old posts just to see how people were getting better.  Mostly what is there are posts from people who post maybe once or twice and then just fade away.  Lots of them say they are very sick too.  Where do they go?  Are they just instantly healed?  I don't understand at all... 

 

Last few days have been really not so much fun.  Feeling as tho I am once again inhabited by another person, as tho who I am has been set aside in my brain.  Very hard to describe.  Awful, awful feeling.  And the space shrinkage has been marching on so that it seems that at some point I just will not be able to process any depth whatsoever.  How am I going to cope with this?  I guess I just get through each day however I can and hope for some kind of recovery. 

 

My oldest daughter comes tomorrow for a visit (lives 700 miles away).  Such fear that I will not be able to interact with her tho I know she understands.  I just feel that I have once again let her down and that I should be able to force my stupid brain to function!!!   She badly wants me to get off the Doxepin, totally understanding that it must be very slowly.  And I am once again holding because of the uptick in my symptoms.  Can tapering by .01ml every 4 days actually upset my chemistry??????????  If only there were some certainty, some real knowledge of what it actually going on. Back to the same old whine, sorry....

[Pugknows]

((((Selma)))) I think you are on the right track, slowly reducing the Dox.

 

Eventually, you and hubby will look at each other and say wow, we're almost done!

 

I don't think your small cuts are worsening your wd symptoms. They wax and wane as your body and brain heal.

 

Love, Pug

[SelmaLady]

Thank you Pug!  I think you are right that its just a brain trying to find some stability.  I'll talk to husband about taking another milliliter out.   At the rate I'm going I'll be off in 4 years!!  So hoping that things will calm down a bit more so that I can speed the process up just a little, like .01ml every DAY like you're supposed to do.   I'm so relieved for you that if nothing else, the horrible akathisia has left.  I know you have insomnia which is not fun at all and I'll surely be praying that you see your healing in this area too very soon.  Love to you.

[Pugknows]

Thank you, Selma. You are such a sweetheart.

 

I'm slowly getting a little better, bit by bit. I plateaued in a looong wave, months 4-7 (four very tough months!)

 

Starting in month 8, I think my healing has been more linear than most others on this forum, with my baseline slowly raising once a week with up and down wobbles throughout. I feel like I'm limping along at a snail's pace.

 

My insomnia has improved also. I usually can fall asleep now between 10-11pm and stay asleep until my 4am cortisol alarm. Ugh!

 

I think if you keep tapering slowly, like 4% a month in 1% weekly increments, you might manage to keep stable while reducing your dosage.

 

I know your overall time frame for getting off the drugs completely seems daunting and endless, but if you can keep your symptoms at bay, it won't be a rough journey. You are healing underneath the drugs you're taking and letting your brain get acclimated to the slowly changing environment it needs to operate in.

 

Praying for you always,

 

Love Pug

[luv2knit]

(((Selma))) I'm not getting notifications again, and just now realized it. Apparently it's been at least a couple of days.

 

Continuing to keep you in prayer. Hope your visit with your daughter goes well!

 

XOXO

[Adagiooo]

Hi SelmaLady. I just wanted to drop by your thread to say I hope the weird bodily and space sensations begin to ease up very, very soon.

 

You seem like such a gentle, hopeful spirit. Through all your suffering you still seem to somehow manage.

 

Glad to hear your daughter will be coming to visit. I just know once you see her all of your fears will dissipate and you'll interact with her the best way you can. You wrote that she understands what's happening to you so just enjoy your baby girl.

 

Blessings, healing and hugs to you SelmaLady.

[luv2knit]

(((Selma))) I don't remember if you said how long your daughter was staying. I hope your visit with her went well, and you were able to get some relief from symptoms. Prayers.

 

XOXO

[SelmaLady]

Luv, love you and thank you as always for your concern and your prayers.

 

Ada, such a sweet post to me.  Thank you.

 

Daughter's left---visit good for the most part----some days easier than others but she is a sweetie and always kind and gentle with me. 

 

Last few days have been really roller coaster and no two days the same.  Yesterday was much easier but today as was Mon and Tues, very very hard.  Trying not focus on what's happening in my brain but just to get through each moment as best I can, focusing only on what I'm doing in the moment.  Hardest thing is to not anticipate how much worse this will get until it turns around...Always the effort to look away from that.   The feeling that I have lost all of myself is the hardest to deal with because I have nothing to help me get past the visual.  Time still moves tho and still promises better days at some point.

[LoveandLight]

((Selma))) xxx

[luv2knit]

(((Selma))) So good to hear from you. I did not know how long your daughter was going to be there, and was starting to worry. So glad you had a good visit with her. I have been praying for you, and for your visit with your daughter, as always!

 

XOXO

[Adagiooo]

Glad your visit with your daughter was good. Hope your roller coaster days level out. You will turn the corner before you know it.

 

Blessings and healing to you.

[luv2knit]

Thinking of you... Extra prayers!!

 

XOXO

[pug]

I hope that continued healing and relief come your way very soon.

[WinningThrough]

Hi Selma. I'm not on SA much at the moment but I just wanted to say hello and hope you're coping ok x

[SelmaLady]

((((L&L, Ada, Luv, pug and WT))))  So grateful for encouragements.   You are all such kind people and I'm so hoping that you see relief very very soon.  xoxoxo

 

The past few days have been ....  very challenging.  Some very hard times and some let up at times too.  It does look like the uptick that I've had is slowly beginning to calm back down and for that I am very grateful.  I'm probably going to resume the taper of the Doxepin again tomorrow--I wanted to be sure that I wasn't going into an extended time of upreg.  I'm still so wanting to be OFF these drugs. 

 

Husband got a new scale that was supposed to be much more accurate.  NOT.  He has to measure both the Doxepin and the Zoloft and the scales that we've had just are not consistent so that he has measure and weight and measure and weigh until the reading is right.  We were so hoping that this new (and expensive) scale would make the process easier.  Looks like this scale will go back....  Sigh.

[luv2knit]

Glad that the uptick seems to be calming down somewhat, and you are seeing some easier times. Sorry things have been so challenging--and sorry about your scale! That's disappointing to get something that should be better, and have it turn out to not be

 

Prayers for continued progress!!

 

XOXO

[Wildflower0214]

Thinking of you. I'm sorry to hear you have recently had a rough patch. You are always in my prayers. XOXO

[luv2knit]

(((Selma))) Hope you're hanging in there. Thoughts and prayers are still with you.

 

XOXO

[luv2knit]

Thinking of you, Selma. Still keeping you in my prayers!

 

XOXO

[Pugknows]

You haven't posted in awhile, Selma. I hope it means you are doing better and out in the world living life.

 

Love, Pug

[SelmaLady]

((Thank you Luv and WF)) for your thoughts and prayers.   Its always so comforting to know that prayers are going up, huh?  Praying so hard for you too.

 

Thanks Pug for thinking of me.  I haven't posted because not much to say except "more of the same"  :  Visual perceptual loss increasing but at a much slower pace and cognitive continuing to improve -- slowly.

 

Husband and I went for walk yesterday evening with the doggies by a lake that is near us and I actually enjoyed it.  We forgot it was day 2 of a 3 day holiday (Labor Day here in the States) so lots of people and HORSES.  I thot it would be scary but turned out even tho I'm seeing thing through a very, very blurry microscope, I still enjoyed interacting with people and beautiful horses.  The day had perfect weather and I could experience a little of that too.  I was thinking about it this morning and realized that there would have been NO way I could have done that last year at this time.  Last year my brain was so, so scrambled and I felt like I was on another planet.  And while I do still have some of those days now, at least it is not as severe when they do come and they don't last all day.  Grateful.  

 

Trying very hard not to go into the "what if's" of facing the tapers ahead and wondering if I will ever be able to get completely off the Zoloft... So want to. 

 

I was reading a post by someone on another FB site about the effects of Clonidine on the CNS and found out that it not only effects NE but also dopamine and GABA.  But since my primary bad guy right now is serotonin , even tho I know that all these networks are interdependent, I'm not quite as frightened by having to stay on it for now.  But what a mess.  I'm holding on the tiny taper of Doxepin for a bit since I've had some bad times after the last drop and want to let things settle a bit.  Geezz, at this rate I'll be off in 6 years!!  I just don't know how to figure in the other two drugs --  Back to one day at a time or I will amp myself up for sure.

[luv2knit]

(((Selma))) Glad you were able to enjoy your walk yesterday. Still praying for your brain chaos and vision issues--and that you will remain stable so that you can continue on with your taper.

 

XOXO

[SelmaLady]

(((Thank you Luv)))  What a blessing you are!  Knowing that you are in a hard hard place and yet remember not only to pray, but specifically what to pray for that I need so badly.  Humbling... xoxoxo

[Pugknows]

((((Selma))))

 

You are a brave soul, sweetheart. You sound very calm and accepting of this process and that will carry you gently forward. One step at a time, no rush. Before long, you will realize you have made huge strides, both in your tapering of the drugs and in your recovery. Always praying for you.

 

Love, Pug

[SelmaLady]

Thank you Pug for such a sweet and comforting post.  Some days I am fairly calm and others, I am very frightened to be where I am and to not know how this will evolve.  I do believe that there will be improvements and I hold onto that hope.  I am so certain that you are well on your way to complete healing, Pug.

 

Fear this morning: am going to the dentist in an hour.  I've had some pretty good days recently, have been walking every evening at the lake that is near us and I think that might be helping some.  But yesterday and then this morning, having some ugly symptoms that indicate I'm still struggling with a hyper brain.  Just dreading having to sit in the chair with his hand in my mouth and terrified of the carbocaine and assault on my nervous system!   Has to be done---accept and move on...

[direstraits]

thinking of you ...hoping all goes well at the dentist.   xo

[luv2knit]

(((Selma))) Praying your dental appointment goes/went well.

 

Continued prayers!!

 

XOXO

[luv2knit]

Just checking in Selma. Still praying that you are at least stable, and hopefully are seeing some improvements.

 

XOXO

[SelmaLady]

Thank you so much dire and luv.   I actually had -0- cavities and no need for any dental work.  Dentist said that the pain I feel when drinking/eating cold stuff is because my enamel has worn down---told me to brush with Sensodyne toothpaste which I have already been doing for 2 1/2 years.  I just am so so so relieved and grateful that I don't have to have any work done. 

 

I've been having some easier days and others that are just dreadful.  I went to a friend's house a few days ago as husband really wanted to go.  She is a sweet lady, epitome of kindness and unselfishness.  I had always loved her house---it's on several acres of woods with a beautiful back deck that looks out onto trees and a small river.  Gorgeous.  And the peacefulness that she exudes reflects all that is around her home.  This time it was a visual side show with trees that seem to overpower me and strange blurred images.  I lost my sense of orientation and felt as tho I was submerged under a deep body of water w/o any reality or visual depth.  My friend has not seen me for two years and wanted to sit next to me.  Can I just say that I could see every detail of her face including the pupils of her eyes.  BUT.... I was able to carry on a normal conversation, joking and commenting on what was being said.  I was aware of her needs and where my poodles were (they too love to go visit her) and I could see was not giving away anything that was not completely as it should be.  I'm sure she thinks that I just have some "emotional" problem tho she has always accepted my explanation of visual and cognitive distortions.  But really, NO ONE can truly understand what I'm experiencing, at least no one that I've heard of...It would be so affirming if there actually were someone else experiencing this.

 

Husband is having great difficulty getting the Zoloft amount just right using two scales.  He is losing lots of tabs in his attempts so he's wanting to be able to combine a part of a tab as a whole plus a tiny amount of the powder that is needed to make the numbers read correctly.  So this morning he had put the small amount of tab and the tiny amount of powder in a small cup---he added water so that the powder would be taken in but it ended up dissolving a great deal of the tab and the bitterness of the concoction let me know that at least some of the Zoloft was absorbed through my mouth.   Who knows how my hyper sensitive system will react to that! 

 

So far, today has been fairly easy in spite of trying to clean up my male poodle from getting "skunked"  (what is wrong with that boy???  This is the 5th time he has had this kind of encounter with the same kind of animal!!!  He is a very bright boy, but why this dumb repetition of putting his entire face and neck smack up against a spraying skunk???)  We have spent two days trying to get the smell out of him , out of the carpet, out of the chair he jumped up on and out of his bed.   S-T-R-E-S-S.   And of course I lose any patience I might normally have had and become a shrieking shrew accusing my husband of all kinds of sins and character flaws.  Life just is too far out of my pretend control...

[luv2knit]

Oh my! Sounds like you have had a LOT on your plate. Glad your dental visit went well. Also glad you got to visit with your friend. So sorry your pooch got so adventuresome with a skunk! Praying everything works out OK with your Zoloft dosage. Also still praying for your brain chaos and vision issues. Stress just really takes its toll on us now, and there is no controlling it!!

 

XOXO

[SelmaLady]

Update:

 

After the good news of no cavities, I ended up having to have a back molar dug out because of the loss of my bridge.  Even tho I did have to have carbocaine I didn't have much of an uptick tho I was/am still a bit more upticked from walking every evening for 20 min (brisk walking) for over a week.  That seemed to send me back into symptoms I was just getting rid of (early/often wakening, akathisia, sobbing, etc).  So I stopped the walking and even after the carbocaine, I'm sleeping much better, just some lite akathisia (usually in morning) and sobbing has stopped.  I had been very frightened about getting a dry socket, but this is the 6th day and no sign of it so I'm sure I won't get it. 

 

NOW, I have to deal with the thyroid.  I had a really high TSH reading (6.30) which can indicate low thyroid activity.  I also had a very high LDL which also can be caused by a low thyroid.  So I know that at the very least, I have to have more testing.

 

I've been reading a lot about treating low thyroid and I'll surely want to have a natural supplement as opposed to a synthetic, if I can.  The big problem is that, tho I have hair loss and weight gain (lots of weight gain!!), these can also be attributed to a destabilized CNS.   I also know that it can take some time to get just the right dosage and that this depends to a great extent on how you "feel" while increasing the dosage of the thyroid med.  Its very common apparently, to go into "hyper" thyroidism while trying to get to the right dose.  HOW would I know if anxiety and other symptoms of too much med is being caused by the med or by a "wave" that would have come anyway?  And once you go into the anxiety/insomnia of too much med, it can last for a few days as the excess clears your system (after you have reduced)---and that's for "normal" people!!!  I can't even walk every night w/o getting an upreg!  I have to ask if if is worth the possibility of going into an unbearable place of upreg to balance the thyroid??? 

 

Husband wants me to go to a naturopathic practitioner which I am wanting to do also.  Thot I had found one, only to discover that she had left her practice so now have to go find another one. My cognitive mind is so impaired and its so hard to do all the research on finding one along with all the research on understanding how the thyroid works and all the tests that you need and what they all mean, etc etc.  I am feeling completely overwhelmed with this.  My husband just can't seem to help me with this either.  But I do read some each day and am getting at least a bit of understanding.  I'm making my goal this week to find a practitioner that can rx a natural thyroid med.  I ordered a book on hypothyroidism from Amazon but its on back order.    

 

Still waiting to take another cut on the Doxepin!!  Still hoping to be able to taper the Zoloft at some point!!  And the Clonidine!!  Feels so overwhelming and unreachable at times...

[luv2knit]

Ugh One thing at a time... I am so glad you have not had any issues--or a dry socket--from your dental procedure!!

 

I know my thyroid is not being assessed as accurately as it could (should) be. I also would like to be on natural thyroid hormone, but my doctor will not agree. I would be afraid to change now. As I recall, though, when I was first put on Synthroid, they kept a pretty close eye on my levels. I do realize, though, that it wouldn't take long to make you feel really badly if it was not well controlled. Hopefully someone has encountered this situation before.

 

I know there is a question right now on one of the FB groups about whether anyone has had increased symptoms after switching from Synthroid to natural thyroid, and I am interested in answers to that.

 

I know right now you have to be overwhelmed with all this, and your tapering too Praying for guidance!!

 

XOXO