Thank you Sheila.
Today, has been a progressively difficult day. Speech is slow and impaired and I have remained in bed all day to avoid upset. Everything feels more than I can handle. Even trying talking to my partner is causing too much stress. Now this is day 3 off my BP pills, not sure if that would do it. Or it is just me. Things seem hopeless again. Good grief.
Best is yet to come? At the moment it is hard to think that way.
I hope you are feelling well Sheila.
xox
Hey Joy, I really like using ACV, what is in your "yummy drink" recipe? Is it the ACV+H20+local honey?Originally Posted by Joy
I've been trying to follow along on your journal and noticed that you are taking vitamin E. What symptom is this for and have you noticed it helping anything?
Hope you are doing well today. It will be interesting to hear what Parox's daughter comes up with for your lil pigs.
Wishing you peace and comfort through your journey.
Hi M&M, Thank you for your message. I love your member picture!
Yes to what you mentioned with ACV, plus I add a good splash of apple juice, lots of cinnamon and cloves (powdered) I usually have it cold, but here it is so damp and cold right now I have been making smaller amounts and having it hot like a tea. Is that how you have too?
Yes, taking Vit E, mostly because it is an oil and I have heard for years from others that it is so good for your skin and hair. I have added it in. I don't take a multi vitamin otherwise I wouldn't add it to my mix.
I just got up not too long ago and hope today will be better than yesterday. The stormy weather is simmering down a bit..and I think that high winds and rain make a big difference for me.
I get a bit of a kick out of thinking Parox's daughter will pick a name and have an interest in one of my pets. It feels like the world gets smaller. A little girl might be happy because I have a little pig way over here in Manitoba. So far away from her. She might tell her friends, have conversations about it, maybe wait happily to get a message or update. Don't you think that is neat??
How are you feeling M&M? Have you found any tried and true things to help you through w/d?
It is very nice hearing from you!
Joy,
xoxo
It’s gonna be up and down, Joy. That’s the nature of neurological healing. Don’t take the down days too seriously. Just count them as part of the healing process, which they are.
Totally neat what you’re thinking about Parox’s daughter.
Meds free since June 2005.
"An initiation into shamanic healing means a devaluation of all values, an overturning of the profane world, a peeling away of inveterate handed-down notions of the world, liberation from everything preconceived. For that reason, shamanism is closely connected with suffering. One must suffer the disintegration of one's own system of thought in order to perceive a new world in the higher space."
-- Holger Kalweit
Hi Sheila,
At times my functioning is nonexistent. Yesterday was a significantly bad day that had me rethinking medication. Except I don't think that will fix it. It is my functioning. Yes tired and horrible w/d but I can't take even one sentence I hear about something negative, or a problem. If he happens to phrase a question in a way that implies I have to do mental work, I'm shot. Within seconds I am through the roof upset and have to return to bed. A good part of yesterday was spent crying and feeling way to overloaded with life. I have been trying to take my blood pressure and bought the wrong cuff size and it causes pain when I use it. That sent me on a spirial. I can see that my blood pressure isn't right just looking at my face and yesterday could hear the rushing in my ears.
I would like your thoughts on something else. I read somewhere recently that infection can cause problems. I wonder about that. A couple of symptoms. My two upper molars are cracked from gritting my teeth. At times they ache for a day or so and then it leaves. This has been for the last 2-3 years. Also periodic flare ups of what I guess is a lymph gland, on the same side at the base of my skull. That stays for a few days and leaves too. Not necessarily the same time as tooth pain. I haven't had it for a couple of months now. The gland under my chin on one side feels larger but I have had it checked by a doctor before who says it is fine. I feel an enlargement. Thyroid came back normal. I have had heat problems, similar to a low grade fever which I had taken for menopause. I don't think that anymore. Recently, maybe last 6 months, pressure on my upper and lower abdomen will bother me..only if my partner tries to lay with his arm over me. No pain but the pressure is uncomfortable.
My doctor here is sooo awful I haven't brought this up and wont unless we drive to another town or can get a walk in clinic somewhere. Both my partner and I go to the same one and we both walk away more frustrated after seeing him as he is useless and literally lies to us. And amazing but he is the only doctor taking patients. About 6 weeks ago I decided to try taking some antibiotics we have for the animals. I can give you the type if you need it but I don't want to get up now. It should be given by needle but I choose to take it orally. I took a dose less than my weight suggested to try it and squirted it down my throat. Yuck.
The following day I did the same with a little higher dose and the third day with a little more again so I was at least at my weight range if not a little more. I worried about stomach issues with the bacteria maybe being killed, good and bad. I started to do better. The heat problem went away. Actually I would have tremors when I would get anxious or cold not heat. I wouldn't wake up at night from surges of heat. My partner could put his arm over my midsection again. Last week I noticed the heat come back and my abdomen is to sensitive to pressure again. Recently I have felt my molars bother me...but only for short time and then it leaves. I am considering taking these antibiotics again. Maybe a longer course. I had done 3 days.
I know this is a 'treat yourself' scenario but if you have any thoughts I would appreciate it. A doctor isn't the answer right now as we just don't have access to one and even the trip into a town takes hours of driving and I am just not up to it.
Could this be making me feel worse or is this nothing...does it effect w/d? Hard to say I guess. I hope today is a better day as I just can't cope with this intensity of non functioning.
Thank you Sheila.
By the way, I found the link in the Omega 3 thread t your website that speaks about the mylien sheath around the nerves. The possibility that rather than focusing on limiting the stimuli that you theorize about opening the gate...Congratulations. You are doing wonderful with your interest and passion to pursue this. I very much respect your efforts.
Much affection and appreciation,
Joy
Sheila, one other thing...I want to look this up, but i remember you metntioned adrenal issues yourself. I am wondering about adrenal exhaustion. I had one of them out almost 2 years ago. Does one have a harder time dealing with the load than 2? Maybe this could be added reason for my 'hitting the wall' feeling. Which is a total inablility to function any further when this happens. Yesterday it happened numerous times...no relief. Laying still in bed and trying not to think or move was about the best I could do to give any relief.
I take my ACV at room temperature plain or with a little olive oil and I almost always add just a tiny, tiny bit of salt (just a taste preference). Before the a/r I used to add it to my morning water.
Oh, yes, it's so cute and fun idea about the pig. I am sure she will enjoy. Can't wait to hear what she comes up with.
Things that have helped me through this : hydration, a routine for bed time (in the beginning), prayer and meditation, acupressure massage, giving myself space and alone time, activities that I could tolerate to distract myself, reaching out, and this website. I've tried many things and have found that TIME is about the only thing that I can say has made a true difference in my symptoms... and I have tried a lot of things to relieve the suffering.
It is a long hard process but for me it seems there was no other choice but to wait things out, reinstatement after the a/r didn't help me at all.
Did reinstating help you out any?
Best wishes
Hi M&M,
Since my w/d I have not reinstated. Some thought yesterday to it as i don't think I can cope feeling this bad. Life feels intolerable. I have w/d pressure and there is some stress here in my life through my partner's issues. Today I left the bedroom to end up in the middle of his issues (which I want to support him on..just can't) and ended up back in bed within less than 5 min. I layed here and tried to talk to my body to relax and bring the pulse and blood pressure back to normal. To just be calm and let it all go..to breathe out the stress and dis-ease with each breath. It did help a little. I just ventured out for a herbal tea and back. I can tell this is a day I can't cope and need to be alone and quiet.
Reinstatement didn't help at all for you? I think that is the answer for me. Really, it would be even more upsettting to know I have come this far and given in when the althernative doesn't help. I can't redo what I have done. My partner says he notices a healing in me already. A huge difference physically with the way I can now move. Prior I was having problems stepping off the curb without it hurting me. Now we have no curbs!! lol, but I can walk and move around easier with less pain.
Time..things have improved? I sure hope so. I thought I was at a good place to do w/d in my life but I now think there is no good time. Regularity and consistency I can see would be beneficial too.
Thank you for your encouragement. It might be fun with Parox's daughter. We will see if she wishes too. She might not. At the moment I don't think I could get outside to take the pics for her.
I hope you are having a nice day M&M. Do something lovely for yourself.
Joy
Thanks for reading the myelin blog post – and you put your finger on exactly what was the new idea. So, you’re tracking just great.
OK, of course, I can’t possibly know whether you have something else going on with you that requires more medical attention, but I can say that all your symptoms can easily be explained by w/d. Many of us, including me, have had persistent, low grade infections for long periods of time in w/d. Lots of temperature regulation problems. Sore and tender areas. Tooth pains that come and go.
You’re in menopause, too, as I am, and that just confounds the picture.
I was so, so, so, anxious for so long that, eventually, in like year 5 or something, I developed adrenal pain only on the left. This got quite bad and scary, but I found that high dose Vitamin C took care of it. The adrenals use more Vit C than any other part of the body.
I would think that having only one adrenal gland might put strain on that adrenal gland in w/d. How much C are you on now?
One question I have is whether the abdominal sensitivity and heat is, by any chance, over the adrenal gland that you still have. I had all sorts of ancillary problems happen around my left adrenal because it was so chronically inflamed.
I would definitely not self-medicate with the antibiotics. They should be a last resort. I would go up on Vit. C as high as your bowel will tolerate. Do you brush your teeth really well and gargle with something – you want to lower your bacterial load.
The other thing we can talk about is digestive enzymes and probiotics to straighten out your gut. How’s your digestion and elimination?
Meds free since June 2005.
"An initiation into shamanic healing means a devaluation of all values, an overturning of the profane world, a peeling away of inveterate handed-down notions of the world, liberation from everything preconceived. For that reason, shamanism is closely connected with suffering. One must suffer the disintegration of one's own system of thought in order to perceive a new world in the higher space."
-- Holger Kalweit
No, RI didn’t help me. But….from what I’ve read, some people are able to successfully reinstate and then taper very very slowly (it could take a year or more, but is certainly the way to go as opposed to suffering so badly). I think it may be because they did it within a certain window of time after stopping the drug c/t.
Yes, there has been improvement on many things. At first it was like dragging a cat to bath water for me to leave the house to go to work. I was severely dysfunctional b/c of the a/r. It was hard for me to leave my house b/c of panic attacks, but I made myself leave the house to go to work. LOOOL, if you only knew me before that would sound so ludicrous.
Joy, I’m praying for you and our whole IAWP Family. I know what you are going through is very painful and I am sorry you are suffering. I believe that healing is possible.
Wishing you peace and comfort.
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