Chat with the BRAINIES!!!

This level of activity has been working for now. I get an email when someone replies and it seems to come right when I’m ready to deal with it.

Although I did have some major improvements in visual alignment and balance early post brain injury, some deficits we just have to learn to accept and adapt to. Many of us here have been adapting for a long time. My TBIs were Halloween of '91 and Memorial day of '93 (May 8) - which was also 9 years after the day my father died. I try to check in every so often, but if I'm in a hurry, I might not pick up low activity and just leave an entry on the group's message board. You might leave an entry there, on the message board at the top, to invite people to check into the string you are posting in. Good luck.

Edited by: SDANLSON at: 9/20/2019 (11:27)

It seems like all the groups are quiet right now. Maybe because the weather is still warm and everyone is busy. You might like the Dog Lovers group. It's' an active group, always someone posting something

Hi. Just trying to get more people and places to talk to so that I am reminded and pulled to keep engaged. I'm in one of those phases with my symptoms where even getting myself doing things I WANT to do often takes more effort and mental/emotional/physical energy than I have. My eyes are still wonky and my reading is still a lot of headache making work so short things like posts in a discussion forum are perfect.

Oh gosh I love my bamboo socks! LOL

These people are nuts. And it isn't sustainable! I do feel best when I UP my protein... I have never eaten as much as I do now, and my muscle tone is great... for an old broad! Still am sitting at that 6-7 lbs from my wish/hope goal. But I am OK. Still have a month, and I can always HOPE.

Good for you to stand up to them! I agree, even though it is all in fun, it can still hurt and we can still feel like we are being attacked.

Bamboo socks?? I have bamboo sheets and I love them, so soft.

I've heard the KETO diet is not healthy. I know they are losing weight like crazy but once they stop the KETO, it'll all come back. You're (we) are doing it the right way. Healthy life changes and exercise. Not a "diet".

You're not far off a 10 now, you can do it!!

{{hugs}}

Edited by: RONDARC at: 3/4/2019 (18:10)

Thanks! A bunch of folks on KETO at my office have dropped 50-60 lbs. They still smoke and don't work out. I don't want to know what their BP's are, but mine is in the GOOD TO EXCELLENT zone!
I am the oldest person in my office--turning 60 in a few months. They said something about my wearing 'old lady socks'... I said " NO. They are bamboo... softest EVER". Then they said the undy thing (all ladies here -- probably still not 'work appropriate' but who cares... ) and I said "UM NO. VICKY's!" lol I know they were just teasing, but having been bullied for years, it hurts. They have no idea.

I try SO hard to NOT compare. I had just bought a bunch of size 12's prior to my accident (some still had tags... they were in a trunk). Now I can wear them, and also the 'dried on high heat' 14's. LOL I hope to get to comfortable 10's. I don't know if it will happen. But I am thrilled with the energy I have.

Wow Barb, 20#'s is a lot! People can be so mean sometimes......it's easy to gain over the holidays but I'm very glad to say I didn't, I watched what I ate, for the most part lol, and I made sure to exercise

We're still having freezing weather also, I wish that would go away......makes my head hurt. We just got past a big storm that dropped 6 1/2" of rain on us in 24 hours. More rain expected tomorrow and then back to a couple nights of 30 degrees. My poor plants are starting to get new leaves & blooms so I'm really taking care not to let them freeze.

KOKO my friends

Doing ok here-we are in a freeze zone here in WA. Work is a nightmare. Who knows what next week will hold! Keep up your YOU!

We all need to work on staying active both physically and mentally, even if we do demonstrate some irregularities, during the winter.

It looks like it has been pretty quiet in several of the groups I check pretty regularly. I guess I'm not the only one with scheduling and ISP &/or computer problems.

Hahaha! I made prime rib too!

I kept it to 3 lbs up... still a bit bloated but my work schedule is messy right now and salt seems to be my crave. Blah.

One of my co-workers is CONSTANTLY EATING CRAP! She has lost 60 lbs then gained 15 over the holidays... she talks about it ALL THE TIME. I am avoiding this person like crazy, as she acts as though she is the only person out there doing anything. Many of my co-workers have dropped significant weight this year, so no one notices my 20 lbs. In fact one person said "well, I don't think you look ANY different". Wow. Thanks. Ugh. Rant over.

We had a good Christmas, quiet for the most part. All put away now. As i said, my work schedule is screwy right now. Blah. I am tired. I came home yesterday and went right to bed, barely making it. I wish I could say I was getting great sleep, but rest is happening. That is something.

Take care!

Good for you Barb & SDANLSON! You really have to watch the pounds this time of year, they seem to creep up quietly, lol, so far so good for me too!

Are you ready for Christmas? I'm ready we have friends staying with us over Christmas, gonna make a prime rib roast, yum!

Wishing you all a Merry Christmas!

Good show. I lost a couple of pounds this week, but it was probably mostly because I had to start back on diuretics after the temperature dropped to stop high BP headaches. Yeah they have a different feel than the sinus varieties. I've got a bit of SQ edema on the lower legs too.

Edited by: SDANLSON at: 12/12/2018 (15:52)

YAY!
I am trying so hard to stay on track. Main goal is to get closer to 160... but honestly I will be thrilled if I stay at 165 throughout the holidays. So far so good! Made it through T-day with NO gain!

Hello all! Hope everyone is doing well. Yes, we should get this string active, even if we just come in to say I've been good. It's been chilly and expecting rain tomorrow. Looking forward to a down day with the rain

We need to get this open chat string more active again. A lot of us are in more in the shorter days, so maybe we can start adding more comments and other input.

I'm having to work a bit on walking technique especially on uneven terrain. I have to make extra effort that feels like I an lifting my left foot (the side I am a bit paretic (weak post brain injury) on) extra high so I'm not catching it on roots and other stuff at ground level so I can have fewer falls per hike.

I got through the second 4 mile park service hike with only one fall. Today falls could have been a bigger problem since a lot of the trail was paved. The hardest part was through the deep sand approaching the river, but not wet right now while the river is lower. The fall line could be seen from where we were. There were some historic houses not too far away away from the falls.

I know, that's a scary realization for us all. I know I wouldn't be here.

Edited by: RONDARC at: 6/1/2018 (12:53)

My first TBI was 25 years ago on Halloween. Just remember life expectancy for many of us would have not gone long past the brain injury (severe) 50 years ago. At that time, the prognosis was very poor. Now (and 25 years ago), even agonal on pick up doesn't mean you don't have a chance with a lot of help.

Whoot whooot! Congrats! I met several people over the weekend at a health fair that I worked at who are dealing with all this... it was great, but also SAD to know how many of us out there that there are.

It's been 17 years today since my brain surgery!

Edited by: RONDARC at: 1/18/2018 (18:04)

Not many of us here any more... frustrating. I know there are oodles of people with brain stuff... I dunno.

We had a cockapoo that developed vestibular when he was 17. It's was hard seeing my fur-baby in that condition but I totally understand it now
I have a tendency to "stumble" sideways while walking if I don't pay 100% attention to the task. My other big problem is if it's dark, I have not perception of where the ground is......just some things that became my new normal after my surgery.

Why is the old main string seeing so little action recently? I guess we need to remember to use it more. With the temperature drop I am having some problems with stiffening and more discomfort in the little joints in my hands and feet. It takes a bit longer for basic exercises to loosen them up so I'm not getting as far, but I know I can't overdo it. My shoulders have really stiffened up too. Some of my cats have really seamed to appreciate the fuzzy bedding I put out for them since we got the rapid temperature drop. I am seeing some nesting activities. I have several cats in their later teens and 20s who need a bit more extra care.

Edited by: SDANLSON at: 12/14/2017 (03:07)

My 11 yo Siamese cross is having to learn to adapt to vestibular disease. Those of us with it know it never goes away. I guess in a way I had less problems dealing with things like not being able to walk in a straight line (unless I was against a wall on my left side) because I had seen it in veterinary cases. I had seen my dog (Correy was a high color (not mostly white) Jack Russell Terrier) go through it and have to relearn things like jumping up steps or onto things or running down the hall with out hitting the right side - his injury was on the other side, and do some basic training reviews that were recovered faster than they were initially learned. I guess it affected my attitude early post injury since I had seen him go through it.

OMGosh that is awesome! I vote for BORING every day! Great news!!!

I do have some great news that I haven't shared yet, I went in for my year check up after having Gamma knife and the Doc told me my "brain looks boring" in other words, there is no change in the tumor & no new tumors starting

Crazy month but I've been wanting to stop by and share

NEATZ66, that's awesome! I need to check that out

TEXASLYNN, we get out early too, try to beat the heat.

Having to get out much earlier than I would like to get in the walk and stationary bike because the heat and the sun give me a headache unless I wear a hat, which I hate. It won't be even reasonably cool here for 3 months. Ugh!

Thanks

That is really cool!!! Have to try it out! Thanks

Hello everyone,

I wanted to tell you about a text to speech app that I found on Amazon that will make posting so much easier. It's called." TalkType " and it puts text to speech capabilities, right on the keyboard. And you can easily switch back and forth from the text to speech to your keyboard to make any necessary corrections, this is going to make posting on my groups and my blogs. So much easier. I have it on my Kindle fire tablet. I checked to see if google had it so I could put it on my ipad, but unfortunately they don't. 😀. One more thing. Its free

Edited by: NEATZ66 at: 7/11/2017 (18:26)

Well, my current insurer has now stated that they will be covering our county--but at a rate increase of over 25%. UGH. It covers nearly NOTHING. But will there be a penalty still if you don't carry it? Who knows. I hate this stuff.

Either you live in Texas or I didn't know there was a state worse, except maybe Mississippi.

Because my family got insurance for me through their company, I have not had any health related appointments in years. I can't afford the deductible and I'm not eligible for the free clinic anymore because there is insurance on me. I got a call for mammogram scheduling, but I'm no longer allowed free appointments, so I get none even though I am in a high risk group. Basically I have insurance only usable if I have another catastrophic injury. I want to know if my family can get me shifted to a policy that does not cover routine care and will only cover severe injuries or medical problems and will that leave me eligible for free clinic appts. They did tell me that if the insurance doesn't cover mammograms I would be able to schedule that, but my mother thinks it does. So I won't be scheduling that even though I am in a higher risk group. Getting medications is a real problem without appts.

Thousands of people are going to be in this boat. I'm hanging on to my teaching job for dear life because I am 67 and Medicare don't cut it. I was terrified to have my knee replacement surgery because of my contract renewal being in question after the wreck last year. And it has not been renewed for the next year yet so I can only hope I'm safe. At this point, Allstate has not paid a dime although they admit liability for their client. But what makes me angrier is my own car insurance going up $40 a month on a truck that is a) paid for and b) worthless as a trade. I hate State Farm worse than Allstate.

The brightest light is the student loan I took out 12 years ago to get my teaching certificate has had the balance forgiven because I've been "teaching for Texas" in prison 4 years.

As June comes into being, I learn that in my county, as of January (unless something happens that is drastic) all insurance carriers will be gone. Mine included. They have opted out, because it is not profitable enough for them.

This is not a political posting. And I don't want it to become one.

I am frantic. I am lost. I am ready to give up. I cannot work--certainly not enough for a insurance coverage job... I do not receive medicare/medicare. I have paid for my own insurance out of pocket since my husband was downsized years ago. He works part time, and is on medicare (he is 69). I am so afraid... I just feel gutted.

I know I am not alone... I just need to vent. I don't get it. I just don't understand any more being ripped up. I seem to make it barely over one hurdle and then 'wham'.

So lost right now.

Oh. It's June already. Hubby Charles came home from the nursing home. He's had a few ER runs and at least one hospitalization since then, plus a scary hospitalization before he left the nursing home. I collapsed at the ER during one of the ER runs, so that was lots of fun. Heart attack was ruled out, and they have since ruled out congestive heart failure (for me). Since I used to have asthma, and inhalers seem to help, the current assumption is that my asthma is back. I am supposed to be evaluated by a pulmonologist soon. Sheer exhaustion is also an ever-present reality, since I am Charles' primary care-taker. Not a small task. He is having a lot of trouble with retaining fluid and with controlling glucose right now. He cannot do much of anything, so he requires a lot of care. At least my collapse in the ER finally convinced the VA that we really do need more support than we were getting from them. So now we will be getting some household help, and I will have some respite care. Finally!

Sounds like a lot of you are having a lot of trials. Prayers are ongoing!

Blessings to all, Kathleen

Awe gee. I am so sorry! The knee pain is a real mess!

Our fridge had a puddle problem, and it turned out to be a blocked line for the ice maker... It was REALLY frustrating... as I was the one who (with memory issues) had to remember to clean it and keep it from ruining the floor--of course the floor is laminate (put in by the folks ahead of us) and is completely destroyed by water. I hope you can get it fixed! What a PAIN!

My leg injury is still in the slowly improving stage. I have had to change how I do some things like getting down and then back up outside doing yard and garden work and how to get the ice out of the bottom of the bottom drawer freezer about twice a week to keep the floor puddling problem (this turned out to be a problem with this model that got a lot of consumer reports entries that came out a little while after we got it) near the refrigerator from happening. We keep puppy pads under the front edge for the same reason just in case it gets ahead of my schedule since it worsens when the weather is warmer. I have back most of the range of motion, but I can still not bear weight on my knee (kneeling) and there is still a big (though significantly smaller than almost 2 mos ago) swelling there.

Edited by: SDANLSON at: 4/25/2017 (11:32)

Message to all~

Since I 'forget as a hobby' I really rely on reminders. I am pretty good at checking emails and getting back to people. One thing that this site has been really hard for me--is that I don't -- for some reason -- get an email when someone writes me. So if I forget to check the site (which does happen) I never know. PLEASE forgive me for not writing you back at times! This brain game we are in is sometimes REALLY frustrating.

Thank you ALL. You are IMPORTANT!

SDanlson~
That stinks, but at least it is going in the right direction!

Hey there TexasLynn!
Sounds as though you are makin' it happen no matter what. That salad sounds DoubleYUM! :)

The compartment syndrome is still slowly resolving after a bit more than a month. I suspect it will need at least another month or so to resolve as much as it will.

Y'all don't know me yet but I'm going to jump in and say hello. Today is a headache day but it has been dull enough that I got two 15 minute intervals of really slow treadmill time done and logged in. I also made chicken salad and ate a portion with some cashews thrown on top. Since I had barfed breakfast, I was empty and so far it has stayed down. I think my biggest issue is time management because I don't seem to have any concept of it anymore. Look forward to chatting with some of you.

Thank you! Please double down on the prayers. Charles did really well at first with his therapy, but now he has lost all the progress he made. I think the virus has made a resurgence. I became ill again after a period of over-doing it, and my doctor was pretty sure it was just that same virus. Charles has now lost most use of his arms and legs again. I am thinking he worked too hard on the therapy, too soon. Now he is back to square one. Gonna talk to the supervising nurse.

OMG you have my prayers and thoughts. It is frightening to think of that sort of horrible result of his time in the service. Just not right.
Sending you good thoughts. This virus around here has been HORRID.

Hugs!

I am terrified of falling. Been really wobbly lately, so I'm using a cane and being R-E-A-L-L-Y careful!

Any of you who pray, please pray for me and my husband Charles. We both had a horrible virus, and it hit him very hard because of all his Agent Orange complications. He was in the hospital for 12 days and has now been in a nursing home for 2 weeks. He will probably be there for another week or 2. The virus attacked all his joints and muscles, possibly his bones and digestive system. Not sure what else. For awhile, he could barely use his arms and could not walk at all. He has improved a great deal but is still very weak. And of course he still has all his other medical conditions that already plagued him before the virus. He averages about 20 ER runs a year, with about 1/4 to 1/3 of them resulting in admission to the hospital. I'm his primary care-taker, so life is pretty interesting, especially when I am having a rough time of my own. The kitties and I just want him back home with us.

Falling always wipes me out. I hope you feel better soon, SDanlson.

I am doing alright. Meltdown of computer sort this morning and I feel as though I have been whipped... Blah.
Neuro fatigue stinks! But I am OK.

Best to all!

I'm a frequent faller after my brain injury many years ago, but I rarely get much in the in way of long term injuries. I have adapted to life with vestibular disease. This time I ended up hitting something hard in an area that doesn't have much padding. Compartment syndrome occurs when when there is swelling or fluid accumulation within the muscle sheaths or swelling in a confined area. It has to be monitored, because if it gets too much internal pressure within the sheath the actual muscle cells can be killed or damaged without surgical drainage. Mine never got that bad, but I have a large area of bruising and subcutaneous inflammation in a track crossing several muscle compartments. I just need to make sure that I keep activity down a while so I don't develop indicators that I will need surgical drainage. As an injury progresses though the healing stages, the current needs will change.

I've treated it (compartment syndrome) before, but having it gives a new view of this type of injury. Animals can't get treatments started as early since owners don't see there is a problem deloping until the inflammation already has a good head start especially since it is something that takes hours to develop most of the time. It may be seen developing in some pets that were injured after being hit by cars for example after treatment for acute problems seen on presentation has already begun or in animals that had no immediate serious injuries. This is probably more than you wanted to know, but medicine can be complicated some of the time. That's where the mental challenge comes in.

I was a farm call/house call practitioner so although I did some regular vaccines and dewormings too I saw some things not seen in a pet practice. Referrals could be part of the plan sometimes too for things many small animal practitioners do in house surgeries and intensive care I couldn't do in the field. Sometimes a specialist is needed. Some large animal cases needing special care or surgeries on occasion need referral too. Any way, in my case, it has never progressed to the point that I felt a referral was needed. but it was kind of looking close for a while. Hopefully it won.t be needed.

Edited by: SDANLSON at: 3/27/2017 (11:35)

WHITECAT19, the doctors says August will be fine unless I'm having problems.....That joke is so true!

SDANLSON, I'm so sorry to hear you fell. I hope you are feeling better.

Weather here has been strange also. We had days that were 90 and now we are back to being cold and cloudy, even frost the past couple mornings.
I'm looking forward to the warmer enjoyable days.

Continued SLOW improvement here. I'm still stuck with deceased activity which makes me a bit antsy. My brother was recently diagnosed with sleep apnea, so he will have to learn to deal with the machine. I remember my father was a loud snorer with quiet gaps when I was little so there may be a possibility he had it. I've always been a poor sleeper, but serious allergies and upper airway congestion have been a been a long term problem problem. My brother has major allergy problems too as does my mother. Her father died young in the 40s from pneumonia before many antibiotics and antihistamines were available.

OH NO. I am so sorry! I hope you feel better very soon!

Now I have to do something really hard. I had a bad fall last Sat AM and I have a lot of swelling of the lower leg. It is a soft tissue injury, but I have the problem of marked swelling inside an enclosed sleeve (the skin of my lower leg acts as a sleeve in this case). I have swelling from knee to ankle basically and it has not gone down much over the last several days even though I have cut way back on activity. I would like a clinical consult, but I can't afford much especially if surgery is needed to open the fascia to release collected blood and serum components - which I don't think it is. This would probably have to be an orthopedic consult and specialist consults cost even more. I would have liked to see more progress by now. Oh, well.

How frustrating! Is it safe to wait all the way to August to see if it worked? Is there any kind of advocate that can help you?

Joke of the day: Do you know the difference between God and a neurosurgeon? God doesn't think he's a neurosurgeon.

We are back and forth between spring and winter in Kentucky. People have been having to cover their spring flowers with frost blankets to protect them from the cold. It got up near 80 less than a week ago. Now in a couple days, it's supposed to go down around 15! But the snow dipped south of us. It has been the strangest winter!

They dropped the ball! I was so upset.......they never requested the authorization for the MRI and they even set up the appointment back in August. I'm positive he said he was going to do one in 6 months.

I only seen the doctor and he said I seem to be fine, oh well, he wants me to come back in 6 months, I don't know what for, I'm not going back.

I do see my neurosurgeon in August who is suppose to request an MRI also. I'll stay on top of that one.

We are definitely in Spring here! Lots of sun and warm weather! How is everyone's weather?

Yes, how did your check up go???

Hope your check-up went well! Keep us posted.

LOL WHITECAT19, I keep a monthly desk calendar on my desk and write in the days plus keep a list on the right side for notes. It's worked out pretty good, so far.

A couple years back, my MRI showed my tumor was re-growing. 6 months ago, I had Gamma Knife radiation done on the tumor. I see my neurosurgeon/radiologist Wednesday for a check up.
I'll have an MRI done to see if the Gamma Knife worked. I'm pretty nervous but keeping a good attitude that the radiation did it's job this time.

I started with a calendar near near the door (it is also near the laundry room and one of the litter pans) so I could at least keep my schedule easy to keep up with. I have to keep things in certain places so I can find them or you know what happens. So, my recommendation is pick a place that is good for you and make that your home base. You might even keep a list of things you want to remember the safe places you picked to keep them. Good luck

I have so many notes, I can't find all my notes!

(Sometimes my bathroom mirror is not very visible.)

WHITECAT19, YES!! lol If I don't make my many notes everyday, I can't get started

Happy New Year, been away for a while. Trying to get back on track

Do you ever feel like your brain has a lot of "No Outlet" streets in it? I sure do!

Happy New Year!




Edited by: WHITECAT19 at: 1/16/2017 (12:10)

Life's been hectic here and it's so hard to remember to check in.........Happy New Year everyone! I'll try to do better with the team in the new year!

Glad you're taking action on the lesion, KGWINDER. I'll be keeping you in prayer.

Hey there sweetie!
Glad you are here. I forget a LOT to check in (epic fail) but life has been a challenge... Hope you had a good holiday.
Miss You!
Barb

So dear group, I'm back trying. I got myself a personal trainer and nutritionally. I've had th three days trying to meet goals. You will laugh but I'm under calories, I'm having a hard Tim we acting enough. Foggy brain has been a problem, and I know why my latest blood work came back with low white blood count. Something that I will be attempting to solve starting next month to biopsy a lesion in my mouth and next week seeing an ENT doc regarding my right ear hearing loss.

But even if there is a problem, I want to be as Strong as I can so I'm trying.

Thanks! I might think about adding that to my solutions. I had some sleep studies recently, and I do have sleep apnea. The CPAP machine is helping me a lot. I stay asleep better once I get to sleep. But I am still having problems getting to sleep in the first place. Maybe the pink noise would help with that.

Of course, my other situation is that my husband is very ill and has a lot of pain at night. That makes him very wakeful most nights. So a part of my sleep problem is that I am worried about him. Always "listening with one ear" much like a person with a new baby. That makes it hard to sleep well, too.

Hope everyone is doing okay!

Whitecat I have had sleep problems for the years since my brain surgery. My go to solution before was Benadryl with the my autoimmune it just made dry eyes even worst. In seeking a solution for my tinnitus, I was introduced to the idea of listening to "Pink Noise" while sleeping.

It has really helped me. If you do a youtube seach for Pink Noise there are several long play examples.

Strange sleep patterns. Imagine that . . . say I, as I sit here at 1:25 am!

I love cats, so appreciate your care for your feral cat colony. I usually have at least one cat in bed with me, too. They have a calming effect most of the time.

Hope your elbow gets better!

Hi, I am having problems getting on line access still. It's hard not having a working computer, but any way that is not new. I also have strange sleeping patterns. I't just how it is. Actually being slept on by a cat or so (as long as they are not having a disagreement) in cold weather seems to help sometimes.

On of my frequent falls several months ago seems to have left me with a floater on my olecranon (bony ulnar projection of the ulna at the elbow) It doesn't really cause any problems except mild discomfort and odd shifting if I have it in contact with something. Lifting, carrying and sweeping don't cause any discomfort. I guess the soft tissues are keeping it pretty much in place since it is associated with a joint and a tendon sheath.

If I had some ice skates, I might have been able to go out to check and see if the van would start today. Oh . . . my balance is not good enough to use ice skates. Rats!

There was a break in the weather on Friday, so I walked to the little Kroger near us to get bread, milk, etc. It is only about two blocks from us, so it was quicker to walk there and back than it would have been to dig the van out. I am assuming the van is still snowed in, since there is still lots of snow outside our apartment. That is after lots of rain on Saturday. Freezing rain, of course!

Charles rescheduled his appointments that were supposed to happen today (Monday, 2/23). I hope we will be able to get out by Friday. He really does need to see the surgeon who removed his toe. It has been looking pretty good when I've changed the dressing, but someone more knowledgeable than me really needs to look at it.

I've been having terrible problems with insomnia, and my mood has not been good. Trying to be more positive, but it is hard. Need more exercise, too, but that is hard when I feel so exhausted all the time. Even when I do sleep, I feel like I haven't.

At least the kitties are cuddly. They are very sweet and loving, even when I don't feed them as promptly as they would like.

I hope your head is feeling better. That headache is the pits!

Sorry, I'm not being very positive tonight. Thanks for listening to me complain!

Kathleen

OMGosh! I am sorry to hear about the lost toe...trying to find a funny thing to say but I am not too quick witted!

I cannot imagine the weather--and I have lived through some of that stuff... wow. I remember being stuck in NJ years ago in huge snowstorms... but this year it just doesn't seem to end.
Thinking warm thoughts for you!

Yesterday was gorgeous here, and I have so much I want to do... head pain was worse than I have had in years, so a totally lost day. But hoping to do something but breathe today :)

Take care and cheer up. It will melt - someday.

Well, the sleep study was supposed to be Tuesday night this week, but we had a huge snow storm on Monday. We are still basically snowed in. It has been too cold for any melting, and the brine they put on the roads is not really working. So my sleep study has been rescheduled to early March.

Since my last post one of Charles' toes went really bad. It had a sore that they were treating for several weeks, and one night a couple weeks ago when he took his compression stocking off, there was a black area on the end of the toe. He wanted to wait until morning to do anything about it, but I talked him into going to the ER. They immediately started him on IV antibiotics, but it was too late for the toe. We literally watched that black spot grow over the hours he spent in the ER. It could have gone into sepsis if we had not acted as promptly.

He spent nearly a week in the hospital, and the toe was removed. We are thankful it was not a big toe, because that is much harder to adjust to. Now I am changing the dressing every day or two. He was supposed to go back to the podiatrist again tomorrow, but there is no way we can get him there. It looks like it is healing okay, so I hope he will be okay to wait until sometime next week. If things start looking bad, we will call an ambulance!

I am having lots of GI pain, nausea, headaches, and fatigue; and my mood has been in the basement a lot of the time. It is supposed to be -16 or colder here tonight, and then more snow tomorrow night (Friday). The whole weekend is supposed to be nasty weather, and probably Monday, too. We are ready for spring!

Charles has taken his ordeal with humor. He tells everyone he is changing his name to Charlie9toes. He will be either a mobster or an Indian chief. He has solicited jokes on his Facebook page. One person offered to call him a toe truck. Another counseled him not to go into the canning business because nobody wants toe jam. I thought maybe we could invent a new game, Tic Tac Missing-toe. The humor does make it easier to cope!

I've seen that you are doing well with your exercise. Congratulations! I am trying, but I am so exhausted all the time, it is hard.

Hugs to you, too!
Kathleen

Oh Wow Whitecat, that is HARD. First of all, thank you to your husband and yourself for the service to our country. I am so sorry he has been dealing with this so much for so long!

Yes, on the days we need care, it seems it isn't available most of the time. My husband is so used to having others think through things for him it is hard for him to not get caught up in the madness. Just today... LOL UGH. All I can say is UGH.

Hope you can get that sleep study. How are you doing?

Hugs,
Barb

Thank you both! Sorry I did not respond sooner. Having sleep issues, and I am really tired.

I figure I can get by without going to a neurologist for awhile, since the stuff that was so debilitating has apparently been partially mitigated by, of all things, allergy medicine.

I went to my ENT doctor today because of my sleep issues. I will be scheduled for a sleep study and will also see a psychologist about other sleep issues. I am hoping this will help further. I also noticed while I was there that there is a new neurologist in an office down the hall from the ENT doc. I think I will check her out. I am definitely not going back to that other one.

I'm so sorry your hubby is not a great care-giver. Asperger's is a whole big challenge in itself. My husband has multiple life-threatening medical issues. He is a disabled Vietnam vet with Agent Orange poisoning and many of the horrible things that go with that (no cancer yet, but he figures that is coming). Most of the time I am the one who needs to be the care-giver. It is a real challenge with the medical problems I have. Sometimes he ends up being the care-giver when I am not functioning well. It gets pretty bad if we are both sick!

Don't apologize about venting here! It helps others to hear about your challenges, too. And it certainly helps me to have a place where I can post my own rant!

It is so hard to advocate for ourselves and not come off as -itches. Sorry... Most of all in my early years I was on what I call a TBI Loop of ANGER and wow did I go off easily. And a doctor?

Will never forget going to see the 'attending' after my first accident. Somehow my husband thought it was more important to stay on a call (he worked from home at the time) and we were 45 minutes minimum from the hospital I had to go to... about an hour before the appointment he comes down irritated with me for bothering him in his office... I am packed and ready to go. Headache about a 5. He would NOT leave, said we had lots of time (he is one of those guys who is always bucking the clock and pushes forward in line cuz he is so important-yes it is an issue :) ). I left. I drove myself to my follow up appointment. In tears. I had NO idea where the heck I was going, but found the hospital (was late) and I was the ONLY one in the waiting room without a driver. My doctor was LIVID. Somewhere there is a letter she wrote for my husband to state that I was not to EVER drive myself again. She showed me the photos of my scans and bleeds. But I had to still go home. LOL I do not remember much after that except being so sick for weeks after. Not a good start to recovery.

Wow. What a whine fest. Sorry about that. AGH! Now, delete or not delete... no. I will leave it. It isn't the only mishap that my dear Jimbo has made. He is a lousy caregiver. Not because he doesn't care-he does. We found out about three years after this, that Jim has Aspergers Syndrome. Not a good combo-TBI and Aspergers. But it is better now.

Not all doctors should be doctors and not all spouses should be caregivers. And none of us should have to deal with this stuff at all. Rant over

It took a while for me, but I've found a good doctor who will listen to me and if I'm having any type of problem, she'll send me right to a specialist. I've been to many who, in my opinion, didn't listen to one thing I said or are just arrogant.

I'll never forget before my surgery, I was so sick, ended up going blind for a very short time which was horrifying so I went to the ER. The doctor said I was just having a migraine (which I had already heard and knew it wasn't migraines) and sent me home with nausea pills (couldn't keep anything down) and sudafed pills. 3 weeks later, back in ER and emergency surgery three days later. The tumor was 5cm (2 1/2", about the size of a golf ball) and growing around my brain stem. This time around I had a wonderful (woman) ER doctor who took care of me and the same nurse from the time before. And of course my neurosurgeon, my life wouldn't be what it is now without him.

Keep looking for a doctor you are comfortable with and listens to you. They are out there

It is so weird that you don't get the emails. That would make it tough.

When my children were little, my younger daughter sometimes talked about people's "remembery" not working right. Your comment reminded me of that!

One thing that bugged me about this doctor was that I came armed with lots of information which I had carefully logged in a very systematic way. She actually used the fact that I came prepared as the thing that made her sarcastic from the get-go! And in the notes her office sent me, she describes me as looking "abnormal" because I had dark glasses on.

Yeah, I think I will fire her!

Thanks for the post.

Hi Guys! I am so thankful y'all are here!!! I have been trying to REMEMBER to check this site every day--for some reason I don't get email notices ( i have tried contacting Spark, resetting setting, etc) and my 'rememory is broken'. So it all slacked away and so forth... Anyway-I have been lonesome here and THANK YOU for being here.

As for your question, about being dismissed, YEP. I ended up firing a LOT of neuro doctors over the years. I am a 'gatherer of info' and for years have tried to put bits together like you were saying... but it is hard. Unless you write EVERYTHING down, which is impossible (I took two steps to the left and then___) my gosh. I had one neurologist tell me to 'Take OFF those sunglasses or I am leaving the appointment'. I said 'fine, turn off the light cuz I cannot take the pain'. We parted ways quickly.

I too have found my sinus to be part of a key to 'brain pain'. If I have any sort of cold, or sniffle, or the barometric pressure is doing any sort of change, I am in pain. I can now, after moving to a low/seaport town manage this most of the time with over the counter nasal spray.

You have no idea how glad i am for these messages!

Hugs to you ALL!
Have a GREAT DAY!

Wow! That kind of honesty is great. Wish the doctors didn't have this idea that they can't admit it when they just don't know the answer. Instead, a lot of them just tell you that you are imagining things so they don't have to own up to the fact that they cannot fix everything.

Thank you for sharing this!

Yeah, One GP actually said he thought I was a hypochondriac. I got a little emotional during that appointment.
And about seven years later, I also had a General Diagnosing Specialist say something to the effect of: "You are having problems. We may never know why and we may never solve the problem. We'll run a bunch of tests to rule out serious and life threatening conditions. Hopefully we won't find anything. And if we don't it might be learning how to cope with the symptoms."
I got really emotional in her office too. Finally someone who validated what was happening and clearly expressed the limits of her profession.
There are certainly all kinds of people out there in the helping professions. Here's hoping you find ones that work for you.
Hugs

This appears to be the most current thread, so I will post here.

Does anyone else have problems with being blown off by doctors? I think when I see a doctor, they just see a fat lady in her 60's with a diagnosis of depression and make a snap decision that anything I say is completely unreliable and just confirms that I am a loony.

I had great hope of getting some help from a new neurologist, but within the first 30 seconds in her office, she had established an attitude of sarcasm and intimidation. Within minutes, I was so anxious I could not even think or speak coherently. And anxiety increases the severity of my tremors and vertigo, which I am pretty sure she thought I was faking. And she did not even attempt to address my light sensitivity, which is one of the most debilitating things I have been facing.

But, good news from another front! Not long after that disastrous appointment, I went to one of those grocery-store clinics for sinus symptoms. The nurse practitioner was very respectful and listened to me carefully . . . also listened about my problems with vertigo and light sensitivity. She prescribed an antibiotic for my sinus infection. She also prescribed an allergy medication that I used to take. I had quit taking it during a period when I had no insurance and could not afford it. Lo and behold, within a week after starting that medication, my light sensitivity and vertigo began to diminish! Now that I look back on it, I can see that they had gotten worse when I stopped that medicine, but I had not made the connection. I don't know if allergies are among the things that brain injuries can cause, but they have certainly affected me for decades. I still have the light sensitivity and some vertigo, but it is so much better that it is no longer debilitating!

I have pretty consistently found nurse practitioners and physician assistants to be much more helpful than doctors. Is this just one more sign that I am a loony, or is there something to this?

Happy Halloween!!

Not here, not me... I wonder, Kwinder? She is SO knowledgeable!

I have a question, I had a skull base Meningioma, surgery and 6 weeks of radiation back in 2001. Now, (I'm thinking because of the radiation) my Thyroid has several large (1") nodules. I'm going in for a biopsy Sept 8. My thyroid is still functioning normally so I'm hoping the nodules are benign. Has anyone else developed thyroid problems after having a brain tumor and/or radiation?

Hey everyone.

This summer I turned 55. I HATE THIS. I am no further ahead weightwise, than I was several years ago. I do 10000 steps a day (well, usually. there are anti-brain days that I am not--own it). I am tired. I am worn out.

God I wish I had never sustained this stupid injury. Lord I wish I had not had seizures that make me have to have meds. Whine.

No, I am not post-meno... had that years ago. It is me, whining. As always.

So much for the great encourager.

How are you?
Barb

just checking in.