A friend of mine, who is also going through having Idiopathic Intracranial Hypertention,because of her pregnancy. (Hopefully, her’s will go away after the baby is delivered.) posted this on Facebook for me…..I thought you might like to see it, but truthfully, I had no idea how add a video to my blog.
Hhahahaha
So I asked one of my blogging buddies who puts videos on her WordPress blog all the time and is going to school for IT stuff. (Thanks Fiona) I hope it worked!
(I must confess, I thought I’d already posted this before I got her instructions and you would have just gotten a link to the video. Then I looked today, and there it still is, unpublished! Ha! How lucky! Now you can see the video embedded in the blog. It is very well done, and not terribly long, I hope you enjoy it.
I read something about Idiopathic Intracranial Hypertention last night, and I had a light bulb moment. They used to call this, a pseudo tumor. Because it acts like a tumor. I heard that but it didn’t really sink in as to what it meant. Then the doctor, who I was reading explained, it causes the same symptoms as a brain tumor. I thought, “Oh Shit!” This really isn’t good. A friend of mine had a brain tumor, she really only had horrible headaches then they took it out through her nose! She’s doing great now! I thought….I’d rather have that. (then I felt kind of guilty. But…ummm, if her’s never comes back, she got off a bit easier don’t ya think? I’m sure she’d agree, I know she would actually.) I am such a bitch lately. But I do love this friend, she has been a good friend to me through all of this and I didn’t mean I’d switch with her, I’d just like to have something easier to cure. Or be able to cure at all!
But there are options, I’m in good hands. Called Dr. Kaylie’s office today, well Stuart did. and he said if I needed a shunt I’d be getting an LP shunt. Meaning it would be attached at the Lumbar Puncture site, not to my brain, so it would not interfere with the cochlear implant. So I will never be completely deaf! Whew! One thing less to worry about.
Stuart also asked about disability, Dr. Kaylie said to just send him the paperwork. My psych. said the same thing. I think I might have a chance at this. A vestibular specialist, a psychiatrist, a neruoradiologist, and a neurologist…and possibly an orthopedist all saying I can’t work. Someone should listen. But I was just looking at the paperwork, and it asked, what date I could no longer work. Heck, I don’t know. When I finally completely stopped working, it was because Stuart got a job in California. I had gone from full-time to a part-time job where I only worked 15 -20 hours a week, and made my own hours. I also went from being a Custom Picture Frame Shop Manager to merchandising greeting cards. Because that was all I could do…and it hurt like hell. I was already having trouble with my hip, and had to quit my framing job because of the Meniere’s. So when we moved to CA, we decided I’d just pay attention to my health. Then I was never able to go back to work. I tried one Christmas to work in a retail store a couple of days a week. I lasted 3 days and couldn’t stand after that for over a week. I had surgery shortly after that. So what date do I put down? When could I no longer work….what magical date? I kept trying and trying damn it! Hell, just last year I worked for 1 week answering the phones for Stuart’s job, but I couldn’t even do that now.
Stuart’s ready to ask a lawyer to handle the whole thing, but that can get expensive can’t it? I don’t even care about the money. I just want to have the label. That sounds kind of sick. But there are advantages through the ADA and other organizations if I am officially declared disabled. Plus, I need to accept it. The money would be helpful. don’t get me wrong, but right now, there are more important reasons I need to have this done.
I have really begun to hate WordPress.
There is a button at the top of my screen, “Congratulations, you win the prize! The chance to take our 5 second survey : )” so I clicked it….It asked if I would reccommend WordPress to my friends and family, I said 0 – Not on your life…it comes back saying I’m not an authorized user for this Dashboard. What? I’m using the Dashboard! You )%(%*^&$. I went to the Users tab, and I’m the only authorized user? What do they want? That’s just strange.
I can’t get any Theme to look like I want.
They want me to PAY to change the size of my Font! I didn’t realize this before, but now that I’m visually impaired, it makes a difference. (and it’s killer to read white on black now, I see gray on Black and it’s very hard, I had to change my other blog.) I feel horrible, some blogs I’ve been reading a long time, now, it’s so hard. There are some I can still read, but I can’t read their side bars. I guess that’s OK. I used to love a black background. Heck, my Create To Heal blog still has one. But since the font is so big and a bit yellow I can still read it, but I may have to change it.
I want to say right now!! IF ANYONE HAS ANY TROUBLE READING MY BLOGS, PLEASE LET ME KNOW. I WILL GLADLY CHANGE THE COLOR AND (IF I CAN) THE FONT OR FONT SIZE) I am writing to WordPress today about my concerns about the font sizes. I do not like that I have to hit Control + to make my screen bigger so I can read my own blog!
I’m not happy with the look of my blog right now.
Not cute enough.
Not Wendy enough.
But I don’t want to change from Word Press, I’m afraid I will lose my followers…and those who are just now finding me through the WEGO Health Activist thingy.
what to do.
WordPress, really wants me to pay for everything. I can’t do that.
*sad face*
I’ll figure out something. I’m sure I will, I’ve come up with some kind of cute looks. We’ll see.
Hope to surprise you with a new look soon!
Picnic with Ants 
Wphew a post-full, or is that a mouthful??? One at a time, the wordpress surveys, just ignore them like I do. You don’t have to PAY anything to change your font or screen or whatever. I need a new look too but don’t have the time to sit and change it and also don’t want to leave wordpress and my friends and readers. on to you: yes for diability, the earliest date possible, not the week you worked last year, the time when you could not work full-time because of your health. Just tell the truth all your doctors are behind you.Your friends are behind you. Go forth, sweet girl and conquer the world! Love, Laurie
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Laurie, Yeah, well…I did realize at the end it was a bit long…but often I don’t write but once a week, so I guess I made me most of it. Plus I’m feeling a bit over whelmed. But so many tears to shed. I am so tired. This illness really does wipe you out. You do have to pay to change your font on WordPress now. It’s an upgrade. It used to not be. It’s the font package, they call it customizing. What ever. I did play around with the Themes and found one I could customize the header and footer, but I do wish I could make the font bigger.
I usually do ignore the surveys, I just thought it was funny they said I wasn’t authorized to be on the dashboard when I was working on it, after I tried to give them a bad review…haahaha Funny how right after that, they actually…FINALLY answered my question to support. hahah
oh no, a long comment. hugs. wendy
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Wendy, Disability lawyers don’t charge to file for SSD. They take a small percentage when you are granted SSD. There is a maximum amount they can take -that is regulated. I would recommend doing the initial stuff yourself, online, where you can take your time doing it. Keep copies of everything so that all the dates you used match. I have already filed and got my SSD, so if you need any help filing out the paperwork let me know.
Have you been seen by an Ophthalmologist yet to find out what is happening to your vision? If you need a Neuro-Op have Dr. Kaylie refer you to Dr Bhatti.
Feel better soon!
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Thanks Linda. I’m getting another LP soon, that’s all right now. My vision seems to be getting better with the Diamox. About the Dates, the matching part is the problem. I don’t know what date the doctors will put, I feel I need to know that. And that’s the first question they ask on line and won’t let you go any further.
thanks again wendy
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Are you on facebook? Why I ask, is that I’ve seen discussions of disability applications, etc. among several different communities there. Also, there might be an organization that helps folks apply or if there is there a support group for Meniere’s (spelling) or Intracranial Hypertention, someone there might be helpful.
At one point when we were trying to get me a green card so I could stay in the US (my presence was linked to a specific job I no longer held), we ended up getting an immigration lawyer after hubby (who is good at these kinds of things — research, interpreting forms, pulling together information, required documentation) wasn’t sure how best to go about the process (due to questions like you have about the work date). It did cost some money, but it was much easier — and we had an recognized advocate with the ICS.
Also, since you have a friend who’s been through the process, you can use her as a resource, too. One piece of advice, from having dealt with the government in terms of green card (which is no longer green) and then citizenship (which we did ourselves) is to make sure you have as many of the documents you require when you apply.
Also, if you’re not successful the first time (a certain percentage seem to be rejected on their first try) you can appeal or reapply. It can take a couple of times. That doesn’t mean yours would be — just that it might take more than one shot at it.
As to when you stopped working — check and see if disability is at all tied into when you last paid into Social Security or income tax. That might affect what you can use as the last day you were able to work.
As to readability: the size and look of the font is often tied to the template you chose. For example, unless I compose in microsoft word blog format, then use the publish button, I have no control over the “look” of my font. Live writer is tied to my template, but sometimes, when I have too many pictures to publish through microsoft word, I cut and paste into live writer. But, I’m still more limited that I was when I used a different template.
If you are on face book and want to change to blogspot for example, you can advertise the change there. And, I image you could announce your change of url on your wordpress blog and at the other activist sites your blog is linked to. And, you could get other folks to mention the change — and blog rolls could be changed, and your new url mentioned. There is also Chronic Babe (a community for folks with various chronic illnesses — they have subgroups and one is about blogging where you can post your url.
You could “talk” with someone who uses blogspot (or is it called blogger now?) and find out how what they think.
I’ve never been asked to do a wordpress survey!
If you go into themes (under appearance and also a separate site within the wordpress site), you can “preview” how your blog would look with any of the various templates (free and paid) and find out how much leeway you have in customizing your blog.
And it’s natural to wish you had something that can be “cured,” especially if the chronic condition has the same symptoms/problems as a curable condition — don’t beat yourself up on that one!
Sorry my reply is so long — it’s a blog post all in it’s own. Got to run or it would be longer! Good luck with your efforts.
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Phylor, I knew most of what you said, except, I didn’t realize if I wrote my post in WordPress the fonts might copy over if I changed them. Oh I think I’ve previewed every Theme on there! hahaha I actually have a blog set up that is private that looks like this one just for that so this one won’t look like 20 different blogs in one day.
I like what I have now. I can read the colors better, funny how I used to read white on black better.
I am on facebook, for the most part…sounds sad, but I do not like support boards. They drive me crazy. There seems to always be someone on there that is a -pardon my wordage- Dick. I’m on the Fructose Intolerance board, and it was great for a while, now there is this girl on there who self diagnosed, but hasn’t said that on the group I asked her. She’s a registered dietitian who has gone Paleo and “cured” herself and can now eat all these foods we can’t eat….ummmmm sure. And there’s all these mother’s on there now talking about their kids. They keep saying my child must have gotten fructose because they were so irritable and mean yesterday…could they just be a brat? Needed a nap? Why does it have to be the food? See….and on the Meniere’s board on a different site…they just whine..and try to get you to try this “cure” and that “cure” yeah sure. ugh! I think I’ll talk to the lawyer, and my doctors.
Thank you for the very thought filled post. love wendy
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Figured you would have know all that — it’s the former teacher in me — always restating the obvious or over efasizing (can’t spell today) so that the students get the important bits and remember then! Not that I think of you as a student needing direction, lol, just I can’t get rid of the personality traits!
Doesn’t matter if it’s the real or virtual world, good projects get overrun by folks like you describe! Good ideas get hijacked by a***oles!
Figured you had checked out a lot of that stuff — I was thinking in terms of finding others with your conditions and their attempts at getting disability. Too bad there aren’t straightup advocacy groups that help folks get access to resources, such as disability lawyers, etc.
I like the ants, too. And, congrats on finding a bra! It is a tramatic shopping experience for me! All those mirrors, lol.
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Oh, if only we could all have an easier cure. Glad that you’re friend is doing well. I tried really hard not to picture something being pulled out of my nose. Didn’t work. lol.
Great idea about trying for disability. Getting a lawyer to help would be the best way to go if you can have someone from the start of the process. They would be able to help with whatever questions you would have. And I don’t know what your forms look like but when I applied, I used the questions on the form that both I and the doctors had to answer, as a starting point to write my own reasons as to why I should be on disability. (We have an optional part to put in our own words, if we’re able, as to what it’s like living with our disability.)
Love your new ants. Hopefully, you can find something in WordPress that you like. Different fonts would be great but sadly, like other companies who start you off with free basic stuff, the “extras/upgrades” have to be paid for. A few extra fonts to choose from, is that asking too much? I’d rather have that than a map that I can and have installed as a widget.
Ugh, I feel a pissy rant coming on, having one of those afternoons. Hope yours is better.
Love
Maureen
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Maureen, Oh honey, I bet I could beat you at a pissy rant today. I do believe I have PMS! I told Stuart I wanted to rip his head off and that I understood he had done nothing to deserve it except open his mouth. I don’t even know what he said. Everything he said today I wanted to argue with him…Oh the poor poor man. I do love him so.
Have you read the Kindle Book? OMG! That is a strange book. Talks a little about the disease…and if you haven’t finished it I won’t spoil it…but I shouldn’t have read it….oh I probably spoiled it. If I had gotten more into it, it would have been a whole tissue box book.
Am very tired today, maybe I can sleep before 3am! but head hurts…maybe not! father and sister still have not acknowledged the brain thing….nothing. I’ve written to them twice saying how scared I am. and people wonder why I want to have a bouncer at my funeral? huh? sheesh.
love ya w
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oh Maureen, found a bra….that fit even better….oh I am a D cup! and it’s not white! Same style as the one I liked so much but after wearing that one a couple of days decided the band was too loose, and since it fastens in the front…well…SOL. Now I have a nude bra in 36D (I really think this bra runs different, I couldn’t get a 36 around me in the ones that close in the back.
So excited….a bra has been found! What an accomplishment. w
On Wed, Mar 14, 2012 at 8:30 PM, Wendy Holcombe wrote:
> Maureen, > Oh honey, I bet I could beat you at a pissy rant today. I do believe I > have PMS! I told Stuart I wanted to rip his head off and that I understood > he had done nothing to deserve it except open his mouth. I don’t even know > what he said. Everything he said today I wanted to argue with him…Oh the > poor poor man. > I do love him so. > > Have you read the Kindle Book? OMG! That is a strange book. Talks a > little about the disease…and if you haven’t finished it I won’t spoil > it…but I shouldn’t have read it….oh I probably spoiled it. If I had > gotten more into it, it would have been a whole tissue box book. > > Am very tired today, maybe I can sleep before 3am! > but head hurts…maybe not! > father and sister still have not acknowledged the brain thing….nothing. > I’ve written to them twice saying how scared I am. and people wonder why I > want to have a bouncer at my funeral? huh? sheesh. > > love ya > w > >
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Well, this 2 comments for the price of 1 reply makes things easy. Is it part of the setup of the blog theme or is it a surprise it turned out like this?
Yay on the bra! I think companies should pay us to buy bras since it can be such a hassle sometimes.
PMS, huh? I just tried to chill for the rest of the day. Rented The Ides of March so I’ll watch that later. Looking at Clooney should improve things.
I read the first chapter of the book, but I have some others that I paid for and I keep telling myself that I really should dig into those first. I know part of the book is that she writes letters to her dad so there will be emotional stuff. I was hoping that some of what she has been dealing with IRL was put into the book. Have you checked out her blog?
Hope your head’s not hurting as much and you got some sleep. Is it too much to hope that your relatives have replied to your emails by now? You don’t need that extra stress of dealing with that issue.
Love and healing hugs.
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The blog…I meant for it to look like that, there are some things I’d like to do differently a bit, but I’m limited. : (
The book. There’s a lot of information about nothing in there. The information about getting the VP shunt made me VERY happy to hear I wouldn’t be getting one. The letters to her dad were often strange. I haven’t read her blog, but I assume you do? I’m dying to tell you spoilers here….and why I should not have read this book right now. : ) *laugh*
I tried looking at her blog, I got confused, I don’t think I ever found the blog part. I found pages all about her books and things, and an interview about her. I am happy to know the book is fiction. The book really did confuse me a lot, and I felt like it was filled with a lot that I just wasn’t interested in….it really did read like a blog, and that’s not something I want to sit down and read from end to end. It sounds like the real person is much more positive about her illness.
Father finally wrote back. He lives in De Nile. He says, he still believes I will get better….by that he means I will get well. And he wants to come for a visit…up and back in one day. It’s a 4 to 4.5 hour drive one way…but he wants to do it in one day. OK…He’s 79! Whatever. Sister, no response, and for some reason, I’m not expecting one…i did the crossed the big line the last time, and mentioned the niece….oooooo…so I’m thinking I’ll be the estranged sister once again soon. Oh boy. I haven’t really known how to deal with her anyway…it’s like walking on glass.
thanks for caring. wendy
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That kinda sucks about the book. I hoped the character would get into the illness to a degree. I know it would be fiction, but still based on real-life. I looked at her blog today and it wasn’t as confusing as the first time I looked at it. That big ad at the top for the books is still there but the extra advertising that was before her posts are gone. For now, at least.
My dad may have met your dad in De Nile. I guess he thought, like I did at the beginning, that the doctors would figure out what was wrong. Even after a few years he would still ask if I was getting better, was I going back to work, did the doctors found anything. I had to tell him to stop asking me those questions because I wasn’t getting better. Living in a different city it’s hard for him to understand, even though my mom had Meniere’s. She was episodic but lucky because it was short lived and acute. It wasn’t chronic like my dizziness is with me. And he’s from the generation that thought to pull yourselves up from your bootstraps and keep going. *siigghh* If only it were that easy.
I hope your visit with your dad goes OK, as short as it will be. (which may be a blessing) Your sister… at some point you can only try to not react to them, I guess. They probably won’t change.
Hey! Tomorrow’s the 17th. Happy St. Patrick’s Day! I’m posting some funny animals pics and a bunch of Maxine comics in honour of the big day.
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Maureen, OK..I can’t help it…so if you don’t want the spoiler…don’t read this….I did figure this out, but she writes to her father the whole way through, and he’s obviously dead. And in the end, it’s pretty obvious, she dies,, and they meet up in heaven. Ahhhhh! Glad to know she’s not really dead, would have loved it if her book had given people with this disorder some hope, instead of …. oh dad I’m scared I have a lump on my back in line with my VP shunt, it’s swollen and red, I’m going in to have it looked at….and then she’s with him dressed in white in a part…is this heaven? she doesn’t care. She loves to say in the book…and they say I’m the one with the brain disorder…..ummmm at that point I felt like…yeah, you just did a number on mine!
But I was glad to learn more about VP shunts. Think it’s funny she calls her’s Benign Intracranial Hypertention, they love to give this same disorder so many different names. Thing is she keeps saying how rare it is, but it’s not rare for women who are obese. And I’m afraid they are going to put me in that category. Even though I wasn’t obese when this started. I gained 50 lbs since it started. I’m barely in the Obese category now, so I do not want to be put in that group, they make it sound like they brought all of it on themselves, and I will not have that!!
Still no hearing from sister. No biggie. I love her, but she confuses me so much. I think it’s because she was a breeder, and I’m not. She cannot relate to someone who would choose not to have children. (just a guess) haha. Visit with father. Could be interesting. Probably, I’ll be sick because of the stress, and end up sick as a dog. I think my father Finally understands I will never get well, like him with diabetes….but he thinks it will get better. Can be controlled and feel better. If I’d just give it to the lord, and pray about it. Not really my thing, you know.
having a rough day. Happy St. Paddy’s day tomorrow. I’ve been working on a post accepting awards I’ve been given but haven’t accepted….how horrible of me huh? But I can’t make brain think straight that long. Words do now want to work right. (seriously, it takes longer to write, and hopefully I’m catching most of the ….duhhh…stuff.)
hugs. w
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Ooooh, pretty blog ! Looks great 😀 Thats great news about the shunt and hearing loss, one less thing to worry about i guess, but still isnt easy 😦
I know what you mean abotu selecting a date for whnyou became unable to work, i honestly dont see how they could not accept that you cant work, why do they make things soooo hard?
I started out with my blog on blogspot but swapped it over to wordpress as wp i find much easier lol (but i am known as ‘backwards girl’ by jeremy, so probably everyone else find blogger easier LOL. Dont know how I missed this post 😦 Im not getting emails at the moment (thats a whole other story, i dont know what i ahve dont to my laptop haha)
Hope you are feeling as good as you can, thinking of you x
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Hey Fizzy, I think Blogger used to be more of a pain in the but, now I think WP is….what goes around you know. blogger has a cool design part now….if’s fun and you can really specialize your blog. glad you like the ants…Stuart liked it.
someone told me if I type my post in Word then import it to WP the font will stay, I’ll try…we’ll see.
Can’t get email….did you get that huge long rambling while I was having a brain squishy night reply to your last email? If not…I’ll have to find it, it’s too funny. That’s one thing about having a brain disorder, you get all squishy brained sometimes. And I wish you could hear me talk when I’m like that, you’d swear I’m drunk….plus I keep coming up with the stupidest silliest jokes….mostly about poop. (I was in the bathroom, I was feeling all slosh head, and I went a little…I sang “Poop! There it is!” I came out of the bathroom and Stuart asked if I called him, “No”. “did you say something?” “yes” “What?” I smiled real big and said…”Poop, There it is!” He just died….You sang that and you were in there all by yourself? Yep. and now I keep saying stupid shit like that. Our poor old dog, had a little turd stuck to her but. She dropped it on my side of the bed…we didn’t notice. I moved the sheets last night and there’s a squished turd. Stuart was asleep. I’m cleaning this up…He wakes up and asks if I’m alright, I turned and said….”Turd, turd, turd….turd is the word….” What the hell? Can I not communicate except by changing stupid old songs into shit jokes?
Please tell me you had to grab a tissue because you were laughing. Because, Stuart was half asleep and I was poking on him with my finger to the beat of Bird is the word, but saying Turd. why does he put up with me? and I’m giggling at it now. Ha!
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When I got disability I was told I had to go back to the date when I last worked, even part-time. But your one day–I can’t see that would count. They just pick an arbitrary date (never as far back as you last worked, anyways, as far as I’ve heard–unless it was a specific accident).
The disability lawyer doesn’t get paid until you win and get a settlement. They get a percentage. The more you’re potentially worth to them, the harder they’ll work for you. Same thing with workmen’s comp lawyers. I’ve dealt with both and I wasn’t worth much to them. They did little, but took their percentage. I finally got disability the third time only because I went on my own and had a functional capacity test done for proof of what I was physically capable of. He should have suggested something like that right off when I was declined the first time. It was hell to go through, but that is what did it for me.
I hope you get a good disability lawyer. I was too tired and miserable to think straight, but you have your hubby for an advocate, so that will help you tremendously!! Lots of paperwork. The lawyers know what to do and what needs to be filled out, etc. Even the lazy ones will usually get all the basics right–LOL! 😉 Go for it, girl!
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