I wanted to start a new thread so I wouldn't be high jacking Trigals thread. The syrinx thing definately deserves a place all for itself. But I did just want to touch base and say hello. We haven't touched base in a few days. I haven't seen you on much either. I hope your feeling ok
I haven't been on too much either. My wonderful kids decided to donate some of their child hood collectables to me to put up for auction online. They came up with this idea to help me raise some money for the surgeries I am still needing and that are on hold because of the bills piling up.
So we have been working on this the last few days together, getting everything together, taking pictures and listing them on line. I just absolutely love my kids with all my heart and soul We have been through alot together in the past and Devin, my oldest said to me the other night "We've been through worse mom, and we found a way. So we'll make it through this too" It just feels so good to have such wonderful caring kids to support me through this.
So, I've spent too many hours on the computer with all this and I have pushed myself far too much. I am exhausted. I know I should be pacing myself more and resting in between but I'm on a mission to dig myself out of this financial hole I'm in And haven't had any energy to post here. So I figured while its early in the day, I'd pop on and say hello and that your in my thoughts.
I've had a Chiari headache since last night....no fun!I know this new pillow I bought is not helping me,but only making me have more Chiari-type headaches(back-of-the-head-kind....you know what I mean!).For years I never used a pillow,because of the bulging disc thing..I would just put a small blanket under my neck and it worked great...I just thought maybe I could use a pillow(boo hoo hoo...I sure found out I can't...).
Oh Cindy that is so truly heart warming how your kids are putting some of their little treasures up for auction to help out with those med. bills.That just made me well up with tears....the love of our children is so special...makes us feel like we can get thru anything,doesn't it?And we will!!!!
I don't get out to go shopping that much(just the grocery store...and that's not too much fun!).I like looking online...especially when I have so many days of being ill...it's nice and relaxing to shop 'til I drop and not even buy anything....hahaha...so funny!Thank goodness for computers!
We must not let Chiari get the best of us.....I stopped dwelling on it so much...I just deal with my symptoms on a day to day basis and try to think positive...you know how they say>mind over matter<well in our case it's>mind over Chiari<if that makes sense...haha!
You know by the time I see my GP on the 23rd he'll think I am an official nut case when I ask him for all these tests others are suggesting here...I know everyone means well,but I seriously have to laugh,because I know everyone here means well,but we all do seem to be "pro-active" for the things we are suffering from.Like me I relate to Chiari and B12 and others relate to lyme disease(actually my niece Jennifer was DX with lyme right before she got married and she was one sick young lady...it was awful...we thought she was going to die...she couldn't walk,it waslike having a severe flu).Thankfully she got thru it.I don't think I have it,but I'll mention it to my dr. and I'm sure he'll give me a great answer...LOL!
So I do understand how we can have other health problems besides having Chiari(seems unfair though,because Chiari is enough by itself).
Hope Derrick is doing better with each and every new day.He will make it thru this,because he is a strong person and having a positive attitude is very healthy.
Well I wish you lots of good luck with your auctions!You've been working hard with that,but yes you need to rest too....but it's fun to have something to do,besides the everyday stuff...and dr. stuff.....we can still have fun!
Virtual friends are the best!! I'm glad to have you here to add some cheer to my day
Pillows are soooo essential but you have to find the right one. I use a very big fluffy feather pillow. My head can lay low and I put the bulkiness in my neck area. If your position isn't right, it will leave you with a headache for sure. Try putting it in differant places for support. I just find the feather ones more adjustable because you can put the fluff where you need it. With chiari, neck support is a must. I even have one in my car. can't travel without it. My pillow is my most important wardrobe I hope you feel better soon. We have rain heading our way.
Our kids are what life is all about Scout. I am so greatful every day that I have them in my life. I think I told you about their dad? He sexually abused all 3 of my children. It was a very difficult time for all of us. My daughter was 2 1/2 when she told. I call her my little angel But many times when we talk about life back then and my kids will ask if I regret marrying their father, I tell them NEVER because I wouldn't have them. They were the one good thing that came out of my marriage. The only good things. My only regets that he hurt them and I didn't know sooner. The day we found out he left and I never looked back. I had no job, no car, a mortgage and 3 kids. But we are survivors and we made it through. So I think this is just another one of those trials life has thrown our way. Together, we'll make it through and be stronger for it. I think my kids are amazing strong individuals because of what they've been through so I feel they can overcome whatever life happens to throw their way
Online shopping is the greatest invention. Last christmas I did all my shopping on line because my legs wouldn't carry me. This year, I'll do the same. Its like window shopping without the walk!! LOL
As far as lyme goes, your Dr should have already done a lyme test on you. Thats generally standard with our symptoms. But the test are so innacurate and many people suffer without a dx. Your poor niece. I just watched a show with a young woman who was very ill and they didn't know why. Turned out to be lyme. Its a very disabling disease. I'm glad she pulled through.
Don't ever be afraid to ask your Dr for any tests scout. He works for you. And if he dismisses you that way, maybe its time to look for another dr. This is your body and your health and as you've already found out, many of things Dr's dismiss and overlook. Look out for #1!!
Talk to you soon. I have to lay low for a while. I can't kick this awful pain and fatigue!! When I push myself it takes me litterally days to get back on track.
Oh you always help me soooo much.I will be looking for a feather pillow or feather/down pillow tomorrow.I remember having a pillow like that,but my son Travis wanted it,because it was the best pillow ever.I went to get another,but they didn't have anymore then.Well that was years ago...hahaha.Maybe I'll have some luck finding one that's similar. miss that pillow now that I think of it!
Well my head pain lifted this morning.....and I didn't use that "bad" pillow last night....actually my head was hurting everynight I used it...foolish me!
You know I really miss my kids being at home.They're all grown-up and living their own lives now.So it's just me and my husband now.He works the night shift...always has...always will.So it's kind of nice,because we do all of our errands in the morning.I'm not too great at functioning in the a.m. though,but I love getting outside.Not looking forward to winter.I'm a little nervous about walking on ice...just afraid of falling....yikes!
I hope you have a lovely friday(no rain & no pain).I have this little song I sing when I have excrutiating pain>pain,pain go away...don't ever come back anyday<......
I hope that the feather pillow will help. They sell these everywhere. I generally go to ocean state and they have them for 5 bucks. People spend lots of money on pillows. They even have a special chiari pillow you can buy for like $70 bucks. But this has worked well for me. Glad I could help. Now that you know that its the pillow making the headaches worse, ditch that one
I think I'll be lost when my kids leave home. Devin got an apartment today and my hubby helped him move in. I hate to see him gone but know the kids have to move on. Do your kids all live near by? Doesn't the house feel empty now?
Mornings for me, I'm at my best. but a couple hours up and I'm done. Its nice you have your hubby home during the day with you to keep you company and run errands. I'm sure he loves that
icey weather is frightening. And with Chiari, we have to be especially careful of falling. any jolts to the head or neck can cause things to get worse. So definately be careful. Lots of icemelt!!
I like your little ditty scout. You always manage to make me smile
Hi dear Cindy
I love reading your posts....you are the best virtual friend!I didn't look for a new pillow yet...I'm going to do that tomorrow...this home goods store has them for $10.00(not too bad!).I can't wait to have a featherpillow...yippeeeeee!
I bet Devin is one happy kid...I remember when two of my sons got an apartment...they were sooo excited...it worked out real good for them,because Shawn's girlfriend(her names Cindy...I told you before..she's now his wife!)would go over there and cook for them all the time....pretty good deal I think...hahaha...kids are so funny!
Three of my boys live close...Shawn is 4 minutes away,Brandon is 2 minutes away,Travis is 12 minutes away and jason is 1 hour 38 minutes away(I timed it...can you tell?haha!only mom's do that I guess....I'm so funny!).
So my house is an empty nest,But I really don't mind!I see the kids quite a bit and with not feeling well so much of the time that gives me time to get loads of rest.I was busy,busy,busy for years taking care of Ben,then Isabella came along and the kid needed me to watch her...so I've only been "free" since the end of April this year......I would call it "blissful freedom",but my health makes it not so "blissful"(boo hoo hoo!).
Yes I love having my hubs home during the day....so he can take me to drs. appointments And shopping(he Does Not like shopping...haha!).
I really wish I could drive,but that's never gonna happen.The traffic lights have been known to set off a seizures in me so I have to avoid them and look away(could you imagine me driving without looking at the traffic lights?Too Funny!).
At the store today I was thinking about your yummy chicken stew,but the chicken there didn't look too good so I opted instead to buy all the items to make bef stew.That's for sunday...tomorrow I'm baking meatloaf...so my hubs is happyhe loves it when I'm feeling well and do some cooking.I used to cook every night,but now that's impossible...when I'm in pain I can only deal with that.
Well the dreaded rain is coming this way tonight..we'll see...I have pain,but not too unbearable...more like pressure...always pressure.
Sometimes Cindy I'm on the anemia board,because of the B12 expert I am...hahaha!There is this girl there who's mom is not doing too well.She finally got the dr. to test her mom's B12...I hope something shows up with that.Her mom ws fine until she was put on a zillion drugs...now she shakes all the time and can't walk good...I think she's in an assisted living place right now...sooo sad.Hopefully they'll get some answers soon.I guess they are saying she has early Alzheimers and B12 has been shown to help with that.
So many people with so many health isues......I'm so glad you and I are here for each other.....I know you have all your marbles if you know what I mean.
Well I have to take a break...I still have to post back to my lovely Aussie B12buddy RainbowsEnd..she is a fantastic pal(just like you!).
Have a most beautiful weekend my lovely friend!
And we must check on Bearygood and MSNik soon to see how they are doing.
I'm going to miss Devin not living with me. He got an apartment with his girlfriend. She's good for him though, so I'm real happy. But he does all my laundry so now I'm on my own
Cindy and shawn, that so funny. My ex was shawn. I'm glad they are happy. And a girlfriend to cook for the guys, what a deal they had going on. LOL
Thats super that all the kids are close, with the exception of Jason. Funny but I probobly would have the travel time memorized too. It definately a mom thing
Having that empty nest would definately be alot better if our health was good. But when we're tired, we really do need to rest so it certainly has its perks. Thats really strange that the traffic lights affect you that way. No, it wouln't be a good thing to be driving without looking at the lights.
I'm gonna cut this one short because I really have not bounced back from over doing it last week. All I've been doing is sleeping. I can't kick it so I'm just going to rest until I get back to my "normal" self.
I'll keep my fingers crossed for some sunshine to come your way
Hi Cindy...I apologized to Bill...I was a real butt-head...I hope he will understand...I'm just worried about him.That is so sad he doesn't have health coverage.
Sorry that you are feeling so bad about Devin moving out.Maybe he could come over and helpwith the laundry sometimes.I miss my boys sometimes,but I know it was very hard for me when they first moved out.I was happy though when I didn't have to listen to the noise of all the sports shows they all seemed to watch!I prefer quiet.....hahaha.
Hi Cindy!It's sunday evening....what a weekend!I was in big pain All day yesterday,but I didn't care...I took a nap from about 4:30 to 8:30 and then I stayed up 'til 3:30 a.m.,because I was lovin' the pain being gone!
The boards have been busy....I have been postin' to Bill,Bethsheba & Emmaspaws today....we are waiting(RainbowsEnd & FLFlowergirl)to hear about Linda's mom's test results(fingers crossed!!!!).
I have felt realy better today...I actually have an appetite today...which is strange for me!For some reason I have been craving Special K cereal the last couple weeks...it's like I have to eat it everyday!Maybe it's helping me!
It was "pure torture" yestyerday making dinner(the meatloaf),but I did it....my taste buds were off(probably from the sinus congestion) so it wasn't very tasty to me!Then today I got the beef stew all ready(it's cookin' now...my hubs said he'll turn it off at 4a.m.,because he's off work tonight and he stays up most of the night,because he's used to being up all night).It's in the crock-pot so it should be fine even if he forgets...I got the alarm clock set just in case!
Hope you are feeling better and I mean that!I worry about all my pals here.
I didn't get my pillow yet...maybe tomorrow....saturday I was in pain and today we made just a quick run to get laundry soap and then we went to see Benny...his new braces are soooo cute!They are dark brown/green/tan camouflage and they put black fasteners straps on them instead of the usual white(the white was so hard to get clean!).....so they look "way cool"...hahaha.
Did you get to see Devin's new apartment yet?It's kind of fun to see how the kids decorate their own places,you know?For some reason my first three boys like to clean and even cook,but my "baby" Travis is not very tidy...he does all the cooking though,because Kari isn't too interested in that And she loves his cookin'!!!!She's a great girl though so that's what counts.
I used to be very picky about the way I cleaned,but nowwww I let my hubs help...as much as he wants to!!!!
Oh I hope your auctions go really well Cindy!I've been looking around the house for things to sell too.....my hubs used to get mandatory over time,but they cut that out last June and we have felt the crunch big time.Everyone seems to be pinching pennies so at least we fit in with that........my family has gotten so big now with all the extra kiddies so I'm fretting about gifts for Christmas,but I'm sure it will all be okay.It seems the years that it's been harder were actually better,because we were more careful about what we were buying and concentrated more on the happiness the gifts would bring and not the price of the gifts.
Doyou get a lot of snow in MA?We sure do here......and I think this winter is supposed to have a lot of it...helppppppp!Like you said....bring on the ice melt!
Well I'll catch up with you later....I'm seeing the Dr. on thursday...yuck-ooooo...haha....well I have the "test list" ready for his viewing(and I won't even charge him!).So far I'm requesting(actually demanding!haha!)ferritin,iron and lyme...and a urinalysis(I tested positive for nitrates and ngative for protein on a home UTI test)..I tested,because I felt kind of not right after I go..like there should be more..so we'll see...another pain in the behind thing to deal with...i-yi-yi!
Well I hope we all have a good week...we need that.talk soon~Scout
Sleep is a great reprieve from pain, thats for sure. Then when we wake up feeling better, its so easy to stay awake all hours of the night just because we feel better. It definately makes keeping a sleep scedule hard to do. I do this alot myself. But I'm really glad your feeling better
I've been following all the post on the boards. It has definately picked up around here, which is good, A few months ago, there wasn't much activity at all. And you've been so great and supportive. Your post are so cheerful and people who are struggling need that. I haven't been posting much because I'm still having trouble recovering from over doing last week. I'm soooo tired. After an hour of being awake, I get like a drugged feeling and I have to take a nap. Its been rough accomplishing what I need to in a day. Hopefully I'll be back to the old me soon.
Meatloaf is my hubbys favorite!! I haven't made it cuz its just too much preperation. Beef stew sounds yummy!! Especially with the cold New England weather setting in. I've been cheating on my beef stews and buying crock pot meals and throwing them on in the morning and I'm done. They're good but definately not homemade. But these days, I try to find an easy way to get my meals done. Tonight I'm picking up rotisary chicken, already cooked from the grocery store. Then I buy the refridgerated mashed in the tubs and there I have it!! A quick, easy supper. The kids say the mashed are almost as good as mine
Boy, they sure have come a long way in medical equiptment. Thats so great that the kids can pick out cool colors and patterns for braces. Then other kids are distracted by the patterns and hopefully wont be so judgemental and focused on why Benny has to wear them. And to be rid of those dirty white straps are a plus!!
Do you sell online too Scout? It definately can help suppliment your hubbys income when theres no overtime. Its amazing what we have lying around that we can offer for sale. I've had several family members deliver boxes of stuff for me to list. But I have a huge inventory in my store, I'm just hoping new things will bring in new people. Gotta raise the money to get back to New York SOOON!!
I think Christmas needs to be more personalized too, scout. I hate buying gifts, just to buy. They should be gifts from the heart. I'm making baskets this year because I have time on my hands not working. I used to make these and sell them. They really are beautiful. And I can choose differant themes and add items to match. I add flowers and ribbon and candy as well as gifts. Its fun but very personalized. I made one for my kids school onetime and the teachers were so pleased, they asked me to do a class and teach them how to make them. Me and my kids went after school and did a class with several teacers. It was fun. So I figured this year, now that I'm not working, I can create these as gifts for family.
I used to LOVE snow. Now I dread it because it takes strength to remove it. We live in the city and have on street parking. They put on parking bans and we have to find places to park. Either that or they plow us in, right after we shovel out. We generally get alot here too. So, we just buy big bags of ice melt and throw it around, thats all
I haven't seen Devins apartment yet. They went to Cape cod this weekend to an oyster fest so they've been busy. I'm sure I'll get there soon though.
I wish you well at your Dr's appointment. I know its one of those dreaded things. But remember, your paying him to do a service so he should be listening to you. They just don't like it when we tell them what we want them to do. But we have to learn to be assertive and stand up for ourselves
I've been thinking about Derick. Its been over a month and we haven't heard from him, but that one time. I hope everthing is alright. Maybe if we mention him, it will send him a signal to post and let us know everythings OK
Just a quick post...I'll write more later.....that secondary CM I read about it at the national institute of neurological disorders and stroke.....lots of interesting facts.Maybe you could read it and we can share on it!
I have to admit I am very stubborn about coming to terms with my Chiari DX....it's just me Cindy I have a hard time accepting my DX...just frightens me so I deal with it the only way I can.Hoping that Chiari will be researched more...to me there just seems like there's too many gray areas....okay for other parts of the body,but kind of scary when it's your brain.
Well I am kind of wiped out today.....all that preparation with the beef stew....my hubs is happy (his favorite meal!),but it's Too much work...at least my hands were okay...there's days where they are so weak it's hard to do anything...soooo strange if you ask me.
Have to run errands today...oh yes I sell online,but not a lot...I've sold some dvds and a few other things.Your baskets sound amazing and what great gifts to give when you want something with a unique personal touch.I bought a lot of teletubby stuff for Benny(he has loved the teletubbies since he was a baby,but now he's into wrestling(so funny!),but I have a passion(seriously!) about the tubbies..I just love them(I know you're probably laughing like crazy..it is kind of funny...silly me!) and also I've bought some ooak(one of a kind) hand made polymer dolls....there are some really nice ones,but way over my budget(hahaha!)...I can't see paying like a hundred bucks and even more for a little doll!
This post actually got to be a long one!I'll check back in later...so far so good for me today(no pain yet!).
And I can't get that "lyme" off my mind...I want a lyme test really bad...I hope my dr. doesn't argue with me about it...I decided that I'll tell him my neuro asked me to be checked for it...makes sense to me!My neuro did tell me to have my dr. run a complete blood count on all my electrolytes and "stuff",but I also want my ferritin checked,because I run very low on that too......fun,fun,fun!
Chiari certainly does have alot of gray areas and much contraversy. I think for me, my life changed so drastically after the lumbar puncture, it was very evident that chiari was real. I had alot of stuff going on before but when the lumbar puncture left me with the awful head pain and pressure, all of the pieces to the puzzle finally fit together. As you learn more about it, it wont seem to be so fightening. The way I look at it, we could have been dx with terminal cancer. So we're very lucky
I have to run my daughter 2 school soon so I'm going to make this a quick one. Rainbows end said she's leaving and I also wanted to say goodbye before its too late.
But I did want to say, I am in love with the Ooak polymer figures too!! I have several. But I just have been lucky to steal each one on a low bid around $20 for each (strategic bidding) I have the most adorable monkey in a high chair and some babies too. These are so beauitiful. I even have a couple of reborn dolls. The kids in us!
It is getting so cold outside...autumn is here for sure!It just looks so pretty outside...the trees changing colors...I love it!
Well we both have some things in common(besides the chiari!).Yes those little dolls...I love the ones Jenna sculpts from raspbubby hill and also the ones from jennadolls and joni inlow,but they're soooo expensive...I wish they'd do a payment plan.....haha!I love wishberry...I have 5 now and they're affordable and so cute(I'm addicted to polymer babies...helpppp...haha!).I also have 4 from sharletsharletdenise...she is my buddy..we talk quite a bit and she makes anything I ask her to...really.She just made me a sitting baby/with tiny baby the other week...if I lose the bid she makes more of the kind I like......hahaha....so funny!LikeI said before>shopping is good therapy<..my sister and I laugh about that,but hey we have to have happiness,but without breaking the budget!!!
I hope Bill gets better....he is really nice and I just posted him long post.I wonderif he has chiari????hope not!
Well I have some ????for you my lovely friend...first do youhave bladder issues...I still have the urge incontinence thing...some days it better,some days worse....I'm thinking it's menopause,but just asking you in case you have that too..it feels good to know what's from whatI know my dr. will have me get a urinalysis because I tested + on that UTI test,but I don't have burning and I pee a Lot!so strange.....must be a menopause issue!Te next ? is do your hands get cold a lot?Next ? does the cold temperatures make you dizzy?Next ? do you ever feel uncoordinated after washing your hands when you have to bend forward at the bathroom sink?and I noiced that I feel uncoordinated after smoothing out and folding a lot of laundry...I know you don't do a lot of laundry so I'm sorry for bringing that up,but I do have problems with that.
I hope you have a happy day today CindyI wish I could see your store and maybe even purchase some of those lovely baskets,but I don't want to impose on anyone here you know...it's just a thought.I'm thankful just to have you here to talk to...so I hope you don't leave too.Please stay!
So I haven't looked for a feather pillow yet....I know I'll get one soon...can't wait!!!!For nowI'm using just a blanket under my neck...better than that other pillow...yuck!
Have a most sweet day...thanks a big bunch for being here!
The rain passed you and is heading to us in the form of snow. I'm already feeling it and I'm laying low today
The little oak figures are so adorable. And the talent those people have. I am a very creative person and have tried sculping but i stink!! I would love to be able to make these little people. And just think of the money to be made!! I havent made any baskets to offer on there, I just have tons of character items. Dora, spongebob, etc. If you look for 300 pumice, you'll see. You must be a master at keywords to find your little dolls. If you search under differant keywords, you can find some steals!!
Bladder issues are soooo chiari. Actually, the tethered cord is a big factor. We get incontinence, frequent urination like you cant hold it as well as not being able to fully empty the bladder. I know you mentioned the urinalysis. Befor my TC surgery, TCI has us do a eurodynamics test to see how our bladder is functioning. I could never hold it before my surgery. The trip to New york, i had to stop several times. After the surgery, I made the 4 hour trip without one stop. It was amazing. I also had leakage issues which are resolved now. My bowels were an even bigger problem. I really thought i had a tumor. I would get so backed up, I was relying on enemas and spent many nights in the ER in pain. Horrible. I now go regular.
by the way, the laundry has now become my duties. Yuk I can only fold a few things at a time and to load the dryer, I'm careful how many wet items I pick up. I think for you, you really have to pay attention when your at the sink. Bending your neck can be causing your balance issues because your putting pressure on the nerves. Try to act like your wearing a collar on your neck and dont bend it so much and see if it helps.
Also, I run hot and cold all day. Thats common as well. We get alot of temperature fluctuations. We even run low grade fevers as well.
I've been following Bills post but havent fealt well enough to respond. But so many things make me think chiari. His head pressure, worcening of symptoms after a bowel movement, because of the straining, it makes things worse. Not empying the bladder and so forth. If you want to share this with him, feel free and maybe a bit later after I lie down for awhile, I'll send him a post as well.