12-24 months and up support group

[[Ac...]]

:smitten: :smitten: :smitten:

Hello Yearlings! I’ve missed you all so much! I’ve read your posts and appreciate all the encouragement you all sent my way. I took it with me when I practiced doing some normal things. Unfortunately I haven’t improved much in sitting up or walking but I’m still determined to find a way to succeed. I’m planning on trying different things until I am successful. I’m sending my brain a strong message to allow me to sit up like a normal person. It’s been long enough camping in this bed! Hopefully it will stop fighting me back and allow me to sit on a couch again. It’s hard and upsetting at times when it just won’t let me. But I find peace in knowing that it must be protecting me from disaster. If I push too much that won’t be good.

I hope you all had a great weekend. We’ve had much rain this past week which made it impossible to walk outside. Today is rainy too. When it clears out I’m going to give it a try.

Wishing you all better days and sending my love.

Please let me know how you’re doing, ❤️🌹❤️🌹

 

I am doing ok.  Most days I have no symptoms during the day.  That alone is a great thing.  I can enjoy life and function.  I do have some symptoms from time to time so it's not done yet.  Most recently Sunday I felt like I was back in it a bit.  At night I still struggle and wake up in the middle of the night and often can't get back to sleep.  I wish this would get better too, but for now I'll take the good daylight hours, just the nights can sometimes get long and lonely. 

 

In sum, I'm doing ok, and better off than many fellow buddies on the site who are suffering awfully, but I still have a highly sensitized CNS and feel fragile. 

[[La...]]

:smitten: :smitten: :smitten:

Hello Yearlings! I’ve missed you all so much! I’ve read your posts and appreciate all the encouragement you all sent my way. I took it with me when I practiced doing some normal things. Unfortunately I haven’t improved much in sitting up or walking but I’m still determined to find a way to succeed. I’m planning on trying different things until I am successful. I’m sending my brain a strong message to allow me to sit up like a normal person. It’s been long enough camping in this bed! Hopefully it will stop fighting me back and allow me to sit on a couch again. It’s hard and upsetting at times when it just won’t let me. But I find peace in knowing that it must be protecting me from disaster. If I push too much that won’t be good.

I hope you all had a great weekend. We’ve had much rain this past week which made it impossible to walk outside. Today is rainy too. When it clears out I’m going to give it a try.

Wishing you all better days and sending my love.

Please let me know how you’re doing, ❤️🌹❤️🌹

 

I am doing ok.  Most days I have no symptoms during the day.  That alone is a great thing.  I can enjoy life and function.  I do have some symptoms from time to time so it's not done yet.  Most recently Sunday I felt like I was back in it a bit.  At night I still struggle and wake up in the middle of the night and often can't get back to sleep.  I wish this would get better too, but for now I'll take the good daylight hours, just the nights can sometimes get long and lonely. 

 

In sum, I'm doing ok, and better off than many fellow buddies on the site who are suffering awfully, but I still have a highly sensitized CNS and feel fragile.

Wow Accidental that’s still very good progress if you ask me! Way to go! I’m sure you are very grateful. I appreciate you sharing this. It gave me a big smile this morning. Awwww thanks! 

 

I know you’ll continue to improve. Those annoying leftover symptoms will fade out with a bit more time. I also am struggling a bit with the time change. I’m an hour off my schedule and my body is not liking it. This is ok during the day but at night my brain was used to going to bed an hour earlier. So I’m struggling at 9:30 pm in my night waves because my brain thinks it’s my bedtime of 10:30. As soon as I get used to it, it will change again in the spring. I saw they’re trying to pass a law to get rid of all that back and forth. Especially with kids catching the school bus in the dark in the mornings. I think it’s a good idea.

Anyway, hope you have an awesome day. Sending you love and hugs ❤️🤗

[[Be...]]

I read that some states are trying to pass a law about getting rid of DST, but not my state.  It's not going to happen here.  It gets dark here around 5:30pm now and it sucks.

[[La...]]

Happy weekend! Where is everyone? Hope all are doing ok. Miss you!

[[...]]

Hey Everyone

Just checking in. I am still in a bad shape, with headache, dizziness, balance problems, burning brain, burning skin, muscle and joint pain and stiffness, and so on. It just continues. I am taking one day at the time, but wow - it's really up hill. Can't do much.

Hugs, Jørgen

[[Li...]]

Jb,

I'm sorry to hear that you're suffering so much. Hopefully things will pass for you soon. I completely understand because this fear and panic is just too much I can barely hang on. Sending you big hugs!

 

LiveLife

[[...]]

Thank you LiveLife

Big hugs to you too

Jørgen

[[Ga...]]

Hello all.  Just a quick check-in as I am not doing well at the present.  I think I brought on this latest wave of about seven days by using a hand held neck and shoulder massager for too long of a time and pressing down too hard.  I did that last Monday and haven’t felt well since then with bad head pain, light nausea, and flu-like symptoms.  I think having had the flu shot in October, a minor surgical procedure when lidocaine was used, and an MRI which jostled and rattled my neck and head brought all my symptoms back to a high level.  I have managed some good days and enjoyed shopping online for Christmas gifts, so this return of symptoms  is very unwelcome!  Especially the head pain and burning!  Uugggggg!!!!!

 

I am trying to keep the mantra, what I am feeling is my healing at the forefront of my thoughts, but when the head is pounding it is hard to believe it!

 

I sure hope we buddies can get a break so as to enjoy the holidays!  I felt better last year and really got into the holiday spirit!

 

Hugs and healing thoughts for each of you😍🙏😍🎉😍

 

Gg

[[Li...]]

Jb,

Thank you so much!

 

GG,

I'm so sorry to hear this.  You've just gotta let some time go by and I'm sure it will pass. But it's definitely no fun trying to function with all those symptoms.  You're in my thoughts and prayers.You've had some good days so just hang on to that they will return. I'm looking to start a window haven't in a while been really struggling. Hugs!

 

LiveLife

[[Ga...]]

Thanks LiveLife, you know I am pulling for you to get that elusive window you have been waiting for for such a long time.  We both know it’s going to happen as it has happened for so many other BBs, me included.  Windows are almost magical and well worth waiting for!!!

 

 

Sweet, restful dreams🙏😍🙏😍🙏😍🙏😍🙏

 

GG

[[Li...]]

GG,

 

Thank you so much for those soothing, encouraging words. You're always so upbuilding. I do so appreciate it! Hugs!

 

LiveLife

[[La...]]

Morning hugs and love, Yearlings!

 

GG am sorry you’re symptoms are back. Hopefully they’ll be short lived. A clear message your CNS is sending you to tread lightly because you’re not quite there. Sending you big hugs and feel better wishes!

 

Jb I understand how you feel. I’m also having some of my symptoms intensified for few hours. They settle down and do it again. These are the hardest days in our lives. As GG said it will trick us into thinking that you’re not healing but we are! I echo your take on it….it has a damn hard way of showing it. It’s crazy because you’d think healing would mean feeling mostly good. Ha! Not in this case. We feel these symptoms as a reminder of the repairs. I certainly hope you get relief soon and start having more decent days. I’m thinking of you. Keep believing in your healing and taking one day at a time. Big hugs

 

Live I am also fed up with this. But as soon as I think that, I stop myself because I wouldn’t want my healing to just stop where it is and be like this for good. It has to go through this unfortunately. It’s the way to get to the other side. As hard as this is, I keep my focus on my new healed life. Adding to my list of things I want to go enjoy again. It is long! Lol I’m so glad to see you still here fighting this fight that only a true warrior can endure. You’re brave and strong. Just hold on….you can make it! Together we can do this! Big hugs

 

To everyone….please keep believing in your healing regardless of how you’re feeling. Keep taking good care of yourselves each day. Push a little but don’t shove. Please know that one day in your near future this will all be just a memory. Hold on to that thought because that will become your reality. Make giving up not be an option! Nope, not today!

I’ve been still practicing my sitting up. It’s a work in progress. My brain will get it. I’m seeing little glimpses of it trying hard to tolerate it. I’m very hopeful. I’ve discovered that if I’m doing something with my hands it’s easier to endure. It gives my brain something else to focus on other than my symptoms from trying.

It’s cold weather here. I’m having trouble staying warm when I get out of bed. Lol

Sending love and healing vibes to you all.

❤️💗🦋

Remember that you are a caterpillar turning into a butterfly…that takes time. 🦋

[[Ga...]]

LadyDen, so many of us will be uplifted by your wise and comforting words!  If I had the talent to paint a picture of you, I would paint you as “Mother Earth”.  Please take that as a compliment as that is how it is meant to be received!  You are steadfast, brave and strong, with your feet firmly planted in the ground, and all that emanates from you is warmth, kindness, and compassion.

 

To everyone else I am thinking of you and sending healing hugs and thoughts🙏😍

 

GG

 

 

[[Li...]]

LadyDen,

 

Once again you have such positivity and encouragement. It's so greatly appreciated, going through this horrific journey. We need as much of that as we can get. It's so hard to stay on the right track with our thinking when the symptoms just keep pummeling us. Big Hugs!

 

LiveLife

[[...]]

Dear All

Just wanted to tell you that my MR brain scan was fine. So it all comes down to these damn drugs...

LadyDen - thanks for your always comforting words🙏

Hugs, Jørgen

[[La...]]

LadyDen, so many of us will be uplifted by your wise and comforting words!  If I had the talent to paint a picture of you, I would paint you as “Mother Earth”.  Please take that as a compliment as that is how it is meant to be received!  You are steadfast, brave and strong, with your feet firmly planted in the ground, and all that emanates from you is warmth, kindness, and compassion.

 

To everyone else I am thinking of you and sending healing hugs and thoughts🙏😍

 

GG

Wow I have no words GG….thank you for being so sweet! That was one of the best compliments I’ve ever received. It made me cry. So sweet

🌹🌹🌹🌹🌹🌹

[[La...]]

LadyDen,

 

Once again you have such positivity and encouragement. It's so greatly appreciated, going through this horrific journey. We need as much of that as we can get. It's so hard to stay on the right track with our thinking when the symptoms just keep pummeling us. Big Hugs!

 

LiveLife

Yes it is hard but we have each other. I’m so grateful for that. Thank you Live for always giving support and positivity too. Even though you’re going through such a rough patch for awhile now you still take the time to show love to us. You’re just a diamond! I’m pulling for you to finally come out of your rough patch. Keep holding on. You’re doing very well even if you don’t feel like you are. I’m so proud of you!

❤️🌹

[[La...]]

Dear All

Just wanted to tell you that my MR brain scan was fine. So it all comes down to these damn drugs...

LadyDen - thanks for your always comforting words🙏

Hugs, Jørgen

Awww man Jorgen! Now you know I’m not surprised because me and you talked about this. I told you not to be surprised at all testing to come back fine. Hahahaaaa that’s how these stupid drugs injured us….blindly!

Think about that for a sec…..the drugs messed us up so bad that it’s invisible! Crazy when you think about it!

But I will say I’m happy that you didn’t have anything else show up. So, that means just like the rest of us you’ll have to continue to take one day at a time until you heal. Good thing we have each other to lean on.

And you’re welcome for the comforting words. I also thank you all for being there for me too.

Sending you big hugs my friend! 🙏

[[...]]

Yeah, LadyDen

I know. I also expected it to be fine - but my symptoms have worsened so much during the last months, that I needed to be sure. I am soooo dizzy at the moment that I really can't walk. I have to hold on to stuff while walking. My brain is burning. All my skin is burning. Muscle aches, stiff joints, vision problems, tinnitus. And the never ending headache. All day long. But I know - one day at the time.

Big hugs, Jørgen

[[La...]]

Jorgen I understand how you feel. I’m in a rough patch since last night. Not fun!

 

Sending hugs and happy healing wishes to everyone.

 

I’m turning 29 months in 4 days. So I’m not sure if this is my usual turning a month uptick or it’s from me sitting up.

I’m not sure what to do…whether my brain is saying to take a break from trying or keep doing it so it can fix it?

Others from success stories just pushed through with it being hard at first then the brain stop reacting so bad. And some just had to postpone it and try again a little later then it was successful.

 

Any advice is appreciated.

 

[[Li...]]

LadyDen,

Once again I have to thank you so much for your positive encouraging words. They always mean so much.

 

As far as pushing yourself goes, here are my thoughts.. I believe our brain and nervous system are trying very hard to find an equilibrium and I don't think that what we do will really change it that much. I've tried a number of different things to help myself and what I find is sometimes things just spontaneously get better for a little while no matter what I do. So making yourself sit up may not necessarily help you heal any quicker and if it's flaring you up or frustrating you maybe you don't even need to do that.  Of course that's just my observation and thoughts, someone else might feel completely different. Sure hoping  We both turn a big corner and completely heal soon. This is just getting really old. And that's putting it mildly.  Big hugs to you!🤗

 

LiveLife

[[Ga...]]

I like what you posted, LiveLife, as I, too, am in a situation where I don’t know whether to push through pain and uncertainty, or just lay low and suffer in silence.  I almost ended up in the ER again today (as directed by my orthopedic doctor, who thought I may have put too pressure on my neck last week with the vibrating neck massager) as my head pain has once again been off the charts with burning, throbbing, and tingling.  This has been going on since last Tuesday when I used the hand held neck massager on my neck for about 15 minutes.  Of course, my latest MRI of the neck showed some disk issues and arthritis, but nothing that would cause these awful headaches. My GP’s office said I did not need to go to the ER, as I have been down this road numerous times.  So, I have been practically bed bound with pain since last Tuesday and at a total loss as what else I can do to get rid of the headaches.  I have a phone appointment with my neurologist on November 30th as my GP wants him to rule out anything else, i.e. small fiber peripheral neuropathy???

 

What is so maddening is that three weeks ago I was able to attend a two day wedding event, go to a local plant nursery, and do some Christmas shopping.  I know there are a few other buddies in this group who are also having horrible headache symptoms, and I wonder if they have anything that helps with the pain?  I can take the nausea and any other symptoms, most of which at 34 months are basically gone. 

 

Sorry I am no longer able to wear my once proud mantle of…..Positive Paula.

 

Love and hugs to all!!!!!

 

GG

[[Li...]]

GG,

 

I am so sorry to hear of your suffering. I know those headaches can be absolutely horrible I had one yesterday. I'm right there with you in the suffering department.  Beside the headaches and other symptoms my worst symptom is this intense chemical fear it just pummels me. I still have not had a window except for some evening breaks but the symptoms are not completely gone.  And then when it's time to sleep I'm so terrified because I have these panic wake ups, so I haven't been getting much more than 4 hours sleep lately.

 

It must be terribly frustrating to be able to feel so good at 1 point and then go back and feel so awful. We'll just have to hang on until our brain and nervous system gets it right. And hopefully for both of us that will be sooner rather than later because you're 34 months and I'm coming up on 30 months next week.  Sending you healing hugs and warm love!

 

LiveLife

[[La...]]

Thank you Live and GG. You’re both are jewels!

 

Live, I agree with you that no matter what we do things will be what they’ll be. We’re at the mercy of these symptoms until they go away. One day I can sit up for an hour and half to watch a movie and other times I can’t go past 10 minutes. It’s definitely try and see each time I do it. Sadly it’s more so now that I can’t do it much. But I keep trying because I never know when it will. So when it does let me, it gives me such happiness to do that simple normal thing. I literally cry sometimes from the joy after it’s a successful sitting session. Just like you and GG I’m sooooooooooooooooooooooooo tired of being like this! It’s very debilitating. On my good days I think to myself “ am I dreaming! Why can’t I just stay like this? Surely I’ve healed enough by now to just stay this way.” Although my window closes in spite of my hopes…. It does let me know that I’ll do it again soon. It’s the back and forth that’s so frustrating. And you can’t help but think this time I might stay in this nice window. I looked out of my window at the walkway I made progress with and tears came flowing because I haven’t walked those sidewalks in 3 weeks now. Although it wasn’t far, I miss it very much. I progressed to the point of doing it nearly daily. Now that seems so long ago. I keep going to the door….floor rolling under me and feeling like I’ll fall over….in hopes that today will be the day I go back outside to walk. I step outside a couple steps from my door thinking in my head “ I’m going to do it anyway!” I try and few steps later I nearly fall to the ground. SAD! I turn around forced to go back inside to lay down. HEARTBROKEN! This is what it’s like for me nearly everyday. With nearly everything I do…why? Because nearly everything requires balance to perform everyday tasks. All I can do is continue to wait until it heals. I agree that pushing too much is a bad idea. Even the doctors told me don’t do that. Push a little when your symptoms are mild is what all 3 have said. I’m doing that. I just feel my healing is at a standstill. The good thing is that I know I will heal. I hang on to that.

Live, you will too.

GG you will too.

All of us!

We just continue to take one day at a time as we heal. I’m grateful that I have friends like you that understand.

Love you bunches ❤️

[[Ga...]]

LadyDen, both you and LiveLife are so deserving of a happy and healthy life, and I am going to keep my wrists locked around each of yours, and I will explode with sheer joy when I hear of your recoveries.  What a tooting of trumpets, drumming of drums, and blaring of bugles will be heard when you two cross the finish line.  May it be sooner than later🙏😍

 

Hugs,

 

GG