A train of thought post. One thought moving to the next…..
A chronic illnesses can shake your foundation, it can make you question everything…..
“Can I really live this life that has been handed to me?”
You question…..”Why, is this happening to me?”
You think….”I just want my life back….”
You create a story….”My life would be better if only….”
In the very harshest moments, the fear takes over.
What if this doesn’t get “better”? What if it doesn’t end? What if I’m always like this?
This has been going around my head for the past two weeks. The symptoms are not getting better. Are the side-effects from the medication making it even worse? Dealing with vertigo, and dealing with the side-effects from steroids are, mind b-o-g-g-l-i-n-g. My brain will not keep still, no matter how hard I try. BREATHE I keep telling myself. JUST BREATHE I’m jumpy, nervous, anxious, scared….and I’m so woozy, dizzy, sea-sick…..
BREATHE
IN
OUT
BREATHE
ahhhh, just a little.
NO, NO…don’t move your head. You would think after two weeks I would know I can’t move my head. I guess that’s an over-statement. I can move my head, just very, very slowly. Still, I feel as if the room moves with me. The unsteadiness is disconcerting, and is causing the bile to rise in my throat. BREATHE. It is just a MOMENT.
Stay in this moment.
Do not think about the next moment.
Stay here…right here. In the NOW.
I was thinking. I’ve been thinking a lot recently, probably way too much. I have been through a lot of medical tests, procedures…..ect….in my life. I’ve broken bones, had major surgeries, I have dealt with pain, a lot of pain. When I have been undergoing a test or treatment and it is very painful my medical team will often ask if it is “tolerable”? I have only said “no”, once. And I soon went back to that test and finished it. The thought that it will end, makes it tolerable to me. It will only last a moment. I’m in that moment. I know this will end. I can handle anything for a moment.
Why is it different now? The pain is not “worse”. The vertigo is not “worse”.
It is the MOMENT.
I cannot stay in the moment. My mind has jumped to the story….”What if this doesn’t end?” The moment is not just a moment. But wait! Every moment ENDS. Each moment is different!
Look….the moment you just read that is different from this one. It just is. You couldn’t predict it. It is different from this moment and will be different from the next.
If there is one thing I’ve learned over the past few years, nothing is permanent.
Everything changes.
Each moment is a moment.
It is not the past, or the next. it is not better or worse…it just IS.
it is the moment. and I can handle any moment. After all, it’s just a moment.
After my last post I feel horrible I haven’t been back here sooner.
I’m not having a good time with the vertigo recently. My dear friend, Mr. Meniere’s, has decided to settle in for a visit. A long horrible visit…so this really will be very short.
Saw my psych doctor last Wednesday. She is supposed to be talking to my Neurologist (headache pain specialist) about a drug we discussed putting me on. (a good idea huh?) But it’s taking a long time. I did see her late on Wednesday so things probably didn’t get started until Thursday…but my goodness. Well, I won’t get in to all of that. I’m upset about that visit….but I’ll vent later.
I am having a better time of it. Not cycling so much now, I’ve been pretty level for a couple of days now. I’m reading more of the Buddha’s teachings, and it helps. (I’m not pushing Buddhism here….I just get very comforted when I read his teachings and try to follow the practices.)
I really need to control my anxiety. I know the vertigo is more out of control because of the stress. It is my greatest trigger for Meniere’s.
I need to have emergency plans in place…just in case. This helps relieve my anxiety about a situation I have no control over. It gives me a little control. For example, I have an emergency kit for when I have vertigo attacks. I feel my severe vertigo attacks have fallen drastically since I created this kit. I have one for home and one for travel. It eases my mind.
When I started feeling suicidal, I knew it was my illness, but it didn’t really matter. So when I cycled enough out of it to be able to really communicate with my husband, we made up an emergency plan. I know where to call, or go if I feel I am going to hurt myself. My husband put all of my medication away and gives it to me as prescribed so I will not….tempted when I fall in the darkness of my soul. We have a plan. It has helped me so much. I now feel that I am understood. My husband knows how I’m feeling, as much as he can. He’s taking me seriously, and helped me to have in place a way to make it easier when (or if?) the dark lady returns.
Today, we talked about an emergency plan if my husband remains out of work. We can’t wait until there is no money left, it will cost us money to leave here. We need to know at what point do we need to decide to leave. Where we are going, and how things will happen. There are parts in there we are pretty sure about, but we need to solidify this plan. I’m so anxious about our future I feel paralyzed. I know that it is adding to my feeling so very ill.
So….I’m here.
I’m not on the computer a lot right now because of the vertigo.
I’m working on getting the psych meds straight.
We are working on an emergency plan if hubby doesn’t find a job before we completely run out of money. (luckily we were able to get on a mortgage assistance plan, or we would be destitute before now. But right now we don’t have to pay our mortgage because of this assistance.) This will help me feel less anxious about our future.
I have much more to say….things I’ve been discovering about myself…and just thoughts in general.
Thank you all for the loving support you have shown me. I have felt these emotions all around me, and it has helped so much. We may not all know each other in person, but I promise, the loving thoughts sent from all of you have reached me. And I am eternally grateful.
In my last post I talked a bit about my headaches, and the Cerebral Spinal Fluid (CSF) being a bit out of control. So let me give you a run down of how things have been going. It will be pretty short, but at least I’m posting, right?
I had my Botox shots on April 7th, after about a week they started to really work. My headaches lessened in both frequency and intensity.
Then I had the mishap with my medication on May 25th…or sometime around there. I got all of that straight, and started taking my Diamox religiously. I have a separate box just for it with 4 pills in each slot, then I can just look in and see how many I’ve taken at any given time. All good there…at least I thought it was.
About this time I started my period and the weather went wild, storms every day, the humidity and barometric pressure all over the place – a perfect storm for a migraine. For 2 weeks I had a horrible headache every day, sometimes my migraine meds worked, sometimes they didn’t. The headaches kept changing intensity. One moment I would be around an 8, it would drop to a 4, then back up again…all within minutes. I was so confused. Then one day about a week ago I realized my headache felt better if I was up, as soon as I lay down, BAM, the pain would assault me again. This could only mean I had high pressure. But I will admit I felt better than I had for a while, since I could get up and move around with relatively no pain. I was still taking my medication exactly as prescribed. The next day I awoke with very little pain, until I got up. The world spun and suddenly I had a headache so bad I nearly blacked out. Dang-it! Low pressure again. We are pretty sure I had a blow out, and my pressure dropped drastically. So for the past week, I’ve been back on my back. I need help walking to the bathroom. Night before last I had an attack, it was different from most. I did not have true vertigo, I constantly felt like I was going to, I had light vertigo for a while but mostly I only spun when I moved my head. (Yes, it’s pretty hard to not move your head, especially since I had to go to the bathroom often during this time) I was sooooo very nauseous. I wanted to throw up just to make it stop. I had spasms in my stomach like I was throwing up, but nothing came. I could feel the gorge in my throat, but it didn’t come out. This was very painful. This went on for a little over 6 hours! I took everything I could to try to stop it. The nausea was so horrible. I took the pills for it and suppositories. Nothing was working. And I would love to know why, when I have an attack (and I’ve heard others say this about Meniere’s attacks too) do I have to go to the bathroom so much? My dear husband was so wonderful, but I kept getting so confused and I’d start to cry a little because I couldn’t understand him. He was a dear about it all, and stayed up with me…he never left my side except to get me more ice. (I forgot to mention, my Tinnitus has been going Crazy! So loud! I had a piercing sound the other night and told Stuart my brain was having an Emergency Broadcast Signal!)
Now, I have super-duper headaches. Today, it doesn’t seem to matter if I’m up or down, it still hurts. My migraine meds are working a little. (the Toradol shot did little to help, it’s usually magic in relieving my migraines). I will see my headache pain specialist on Monday, hopefully this will be over by then, but I hope they can tell me what the heck has been going on!
On a better note: My asthma is much better. I still have coughing fits, especially after I eat, but they are less frequent and less severe. I’m so relieved about this.
My goal lately has been to laugh at least once a day. Stuart’s a great help with that, he often makes me laugh….and Max is good for it too. Right now he’s loving on my laptop so hard it’s about to fly off my lap. It really is funny when he comes up to me when I don’t have my Cochlear Implant on and Meows at me. I just see his little mouth open and close, no sound…Stuart says he does it often to me and I don’t even notice. Poor Max. I promise he does get a lot of attention. I think even more than I do! haha
I’ve written numerous posts in my head, but haven’t been able to write them. I have tried, but my brain gets confused or my head starts hurting too much. I wrote one and tried to read it over and got so confused. I am not reading this one, so forgive me if it repeats a lot, has a lot of grammar mistakes, spelling mistakes, or simply doesn’t make much sense. You are free to ask me to clarify anything.
Today’s Prompt: The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a shortmemo reminder. Where would you post it?
Instead of creating a reminder on list on-line, I posted notes through-out my house. Things we need to remember.
How many times have I forgotten to take my medication? Too many! Now I keep them all sorted by day and time to take, and have them where I won't miss them. Must remember to take my meds!2 Things I have to remember before I can take a shower. 1 - Take my hearing aid out. Yes I have gotten in the shower and started to wet my hair and realized...Oh NO! I have my hearing aid in! Luckily no damage done, but this I must remember! 2. Because of the vertigo and disequilibrium, I cannot take a shower without someone near to hear me if I need help. I've fallen a few times, or ended up sitting on the shower floor just trembling in fear. I need to swallow my pride and ask my husband for help.My hubby needs noise to sleep, so he leaves the bathroom fan on at night. This doesn't bother me because I take my hearing aid out. However, in the morning the first sound I want to hear when I put my hearing aid in is not a wind tunnel!!!! Since my hearing is distorted, the fan doesn't just sound like a little fan, it sounds like I'm in a huge wind storm. So honey, please remember to turn the fan off.
The 2 notes are on our front door, things we don't want to forger when going outside. 1 - I have an emergency kit made up in case I have an attack when I am out. This item we should never leave home without. Also I need to drink a lot of water with the medication I'm on, and I also need to have water close in case I have to take emergency pills. A Must that we Cannot Forget when leaving the house! 2 - I'm often spent by the evening, so Hubby needs to water the plant in the front. We have a small area with herbs, and some flowers. He often forgets to water. This has made for an unhappy wife. So Watering the Plants out front...Important not to forget!Very Important, Every Day, a note to myself "Remember You are Loved!"
Today’s prompt, Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?
I happen to be losing my hearing due to Meniere’s Disease. So music is very hard for me. I can’t really hear it even with my hearing aid, sounds very tinny. However, I have tinnitus all the time. At this time I’m deaf in one ear, and have fluctuating loss in the other ear, the other day I was having a particularly low hearing day. Deciding my hearing aid really wasn’t doing any good, I decided to just leave it out. That day, I read this prompt. I thought, I couldn’t have a song. Then I thought, but even when I’m deaf I will hear sounds all the time. NO, they won’t be sounds I want to hear, but I will hear sounds.
I talked with a friend of mine, Vincent Morrison, who is a sound engineer. He agreed to help me record something similar to what I hear every day. Please know, my tinnitus changes A LOT. It varies constantly. But these sounds always seem to be around. We did put in some of the startling sounds that just come out of no where that scare me. We didn’t make it as loud as it can be, I did want people to be able to listen to it. I wanted to represent that my tinnitus can be softer, a medium tone, and I would say deafening…but that would be silly wouldn’t it?
So on a better hearing day, my dear friend came over and he tried his best. I must admit I’m not the best person at describing sounds. I am so touched to have this recorded. Trying so long and so hard to explain just a little of what I hear has been so hard….this is my song.
“My Songs of Silence” – sound recording by Vincent Morrison
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.
For some time now we’ve know that I may have a type of high Cerebrospinal Fluid Pressure, where it rises too high then blows out and goes too low.
I mentioned that they caught it in the high level this last time, and we have a name for it. Idiopathic Intercranial Hypertention (this is a link to a Wikipedia article if you are interested). I’m going to call it Intercranial Hypertention of IH while I’m talking today…Okay?
I’ve talked about some of my symptoms. They don’t know if they are being caused from the IH or from the medication side effects, yes they are that similar. Can you believe that? I will be going back in soon for another Lumbar Puncture.
So why haven’t I felt like this before. Some times I may have for short periods and just thought a Meniere’s attack was coming on, or any number of my problems, but remember, I’d have blow outs. Literally, my spinal column would start to leak in weak spots and my pressure would fall, often way too low and I would have those symptoms. If you’ve been following me for long, you know what that’s all about.
This time, not only am I having balance issues, but it’s affecting my vision. Remember, I’m losing my hearing at a pretty rapid rate. Now, I may be losing my sight.
I had not read much on this, I thought my pressure would have to be much higher for this to happen, then I read an article on the Intercranial Hypertention Research Foundation site last night that startled me. The person who wrote it could have been interviewing me. Here is excerpt from the article about visual symptoms,
“The most common visual symptoms are:
Transient Visual Obscurations (TVOs): These are often described as momentary grey spots, or a dimming or blackout of vision that occur in one or both eyes, especially after a change in position (such as standing up from a seated position). TVOs are the most frequent visual symptom but are temporary; vision generally returns to the affected eye or eyes after the TVO episode, which lasts approximately 30 seconds to a couple of minutes. They may also be accompanied by pulse synchronous tinnitus.
Blurred vision: Blurred vision may be a direct result of papilledema and swelling in the surrounding retina. It can also be the result of a retinal hemorrhage.
Double vision (diplopia): Double vision can be due to sixth nerve palsy.
Decreased contrast sensitivity: Over time, chronic IH may affect the ability to perceive changes in contrast. Some with IH report examples of this decreased ability, such as the grey or faded out appearance of black text against a white background. ”
It does mention that ” in many cases, the surgery successfully relieves optic nerve swelling and improves or restores vision.” That was very encouraging. I’m also very hopeful they will get this under control before things get too advanced, but I have not been feeling good for some time now.
We all know acceptance of a chronic illness is a big hunk of the battle. Once you accept it, you can do so much more to make your life more tolerable. But how can I accept this when I don’t understand it yet? When I feel so confused so much of the time? When I’m told, who knows, you may have to have a shunt. Oh, that’s great to hear. A shunt. More brain surgery to put a tube in my brain to drain fluid to my abdomen do they can control how much CSF I have all the time. So if I have a shunt, will this interfere with me getting a cochlear implant?
More questions to ask the doctors. And the new headache specialist hasn’t returned Stuart’s calls. Not feeling good about that!
So right now, there are so many unknowns. I had a strange vertigo attack yesterday. It was a positional attack, but it wasn’t really. If I got in one position it got much better but it was still there and everything was doubled. I was freaking out. In full panic mode. Sweating, and these little cries coming out of me, saying something is wrong, this isn’t right….stop, please stop….and trying to slow my breathing…but not doing a good job. Unfortunately, we were downstairs, and Chris witnessed most of it. I was mortified. Finally, I calmed myself down, if I can get to the point where I can just chatter, about nothing, just talk and talk…I can let it go and even if the world is moving I’m somewhere else.
Afterward, we came upstairs. For most of the night I was off. The walls are wavy, the floor it tilting, I’m living in a Fun House, but I’m the only one who sees it. For days I’ve been telling Stuart that I feel like something bad is going to happen, someone is going to die. Truthfully, I thought it was our dog. She’s 19, she is doing well, but in dog years she’s close to 100. Last night I broke down and was convinced I was dying. I told him how sorry I was, that I know I’ve talked about giving up but I promised I hadn’t given up on him that I was still fighting but I was sure I was dying. At first he tried to say no, but then he knew he just needed to talk to me. I told him what I wanted at my funeral, or rather who I didn’t want there…I want a party instead of a normal funeral where people remember me and have fun, I told him to display a photo of me when I was skinny, not a recent picture. I wanted a bouncer at the door, and everyone had to give their name, if someone gave their name who was on the NO list, they were to be told, “I’m sorry, you should have visited her when she was alive, you are not needed here now.” (Yes, I’m telling him all of this with slurred speech and I couldn’t focus well, but I was sure about all of it.)
So he asked, if you were possibly dying what would you like to do before you die? The only thing I could really think of was to renew our vows. I told him somewhere near the water….a nice lake, or the beach, or a water fall (I bet that would make me dizzy though). He was all for it. He didn’t realize that I wanted to renew our vows so I could point out to him that they were until Death Do Us Part….and I wanted him to carry on without me.
Let me say right now, I DO NOT think I’m dying. (Well, no more than anyone else is.) But sometimes lately, I feel like I must be. My brain isn’t working quite right and that is the only thing that makes sense to me, but then again….my brain isn’t working right!!!
I have been in touch with both my psychologist and my psychiatrist….I’m making sure everyone is looking out after me through all of this because I know my brain isn’t working just right. One shouldn’t see things, or forget things, or not know where they are….it’s kind of freaky. I’m so grateful Stuart has the type of job he does so he can be with me all the time right now.
So I’m in a holding pattern right now…about everything
Right now, there are no good days. I may have some decent moments, but no completely good days. (I even told Dr. Gray that I feel like shit!) – actually Stuart was on the phone with her and she heard me in the background. I was trying to stop cursing, my therapist said, it’s probably not a good time for that. People under this much stress tend to feel better if they curse more. Alright!!! Stuart can no longer bitch at me for my language….but I am trying to tone it down..I do get a bit out of control….can you believe it? Me?
Titty Sling Update – I got too tired again trying on bras…and they let Stuart come in and help me, I’m sorry to all of you ladies who have to do it alone! Finally I begrudgingly picked one. I didn’t like it but it served the purpose. We walked out of the dressing room, and I pointed to a bra, and said, I wanted that one, but they were out of my size. Stuart looks up on the top rack…thank goodness he’s over 6′ tall!! and found one in my size. Once again I said, I’m just buying it! So we did. And it fits like a dream! I love it! But it’s white. ick. I can’t wear white with let’s say…..white. And it was on clearance – $9!!!! but no more in stock *sad pouty face*. We will be scouring other stores tomorrow to see if they have any left!
OH…when I was in the store, an employee, ran into my walker with her shopping cart TWICE! She was picking up clothes people put in the wrong place. She saw me, looked me in the eye, and bam! I have been hit! She said something I could not understand. The next time, same thing. I thought….I’m so glad this store will hire the mentally challenged. (Wow! a big difference from the $.02 that pissed me the other day huh?) I admit she did annoy me, but I just let it pass. The only thing that really bothered me was that she was also the lady who was in charge of the fitting room. I asked if Stuart could help me. Yes, but he had to leave his things outside. (his things were, his sweatshirt, and shopping bags – not store merchandise) He asked where, she mumbled something and pointed to a shopping cart full of stuff. Stuart said, “I wonder if I’ll see that stuff again?” We did, but we had to dig for it down in that shopping cart. How bizarre. But I really felt, mentally challenged, not just lazy like the $.02 lady…. I think that made a huge difference.
So…I’m scared, that’s normal right? I’m a bit off, somehow I have to hope they can make it better….somehow.
Going to start talking to doctors about disability, afraid about that too. If my doctors said they don’t think I’m disabled I think I’d fire them. Oh, I’d be wayyyyy too angry to speak. I know I’d have a break down right there. Yep! So I have an email to my therapist about how to talk to them about this before I actually do it. I’m way too touchy right now.
The new baby should be here no later than Thursday. (they are inducing if she doesn’t go into labor before then). I’ve barely seen the mama. She has been in the guest room with the door closed in the dark for most of the time. Chris has been around. It’s been kind of surreal. Especially with all the new stuff going on with me, and she was diagnosed with this same thing with the pregnancy, but she seems to just have the headaches. I deal with the headaches very well, I’ve been having migraines since I was 11. Poor Penelope has never been sick. This past 6 weeks has been hell on her I think. I hope things are easier after Rowen is born.
Forgive the look of the blog….I’m working on it. I’m still not there yet, but I’m playing. It’s hard to read a lot because things are blurry so forgive me if I don’t make it to your blog a lot, or if I have many misspellings. But the graphic stuff is kind of fun (if they would just tell me what size it needs to be)…I’m playing…It will turn into something we all love I hope!!
**Warning before this is started….I am going to rant…most of it’s just me….some of it may be the fact that they changed my meds and I’ve been up and down A LOT for 2 days (6 vertigo attacks yesterday – much better today) so, sit back and enjoy the ride…or just switch it off…or laugh at me…preferably all but turning me off!*
For some reason, a few weeks ago…or more, my blog has not been playing nice. At least not when I was using Chrome. I tried all the tricks I was advised to do…all about cookies and cacheing…and stuff…yes I will admit it I’m a bit of a nerd but I am in no way a techie. Well these things didn’t work. So, Stuart and a techie reader (please feel free to take credit if you wish, I didn’t want to “out” you if you didn’t want me to), suggested I try to post from a different browser (yes, at first I looked a little dumb founded, but I’m blaming that on the medication, because I did figure that one out. It did take a moment because Stuart said, try posting from IE….I said, “what? You know I hate acronyms!” ‘Unless I make them up.” OK, he did have to tell me that IE is Internet Explorer…how dumb….wasn’t there some old sci-fi movie called something like that? – no that was AI – I was close. ) OK….I tried posting in Internet Explorer since it was already on my new computer. Guess what, it worked just fine. Well that just ticked me off. Everything I do is Google based. OH…then it hit me…almost everything I do is Google based!
Suddenly I felt that Big Brother had taken hold of me and I hadn’t noticed it. Even my new phone is an Android….please can someone teach me how to use this darn thing? I can’t even get it to sync with my Google Calendar! Or do coupons! Why else would I buy a phone? I don’t talk on the phone! I CAN’T talk on the phone! I should get some use out of it!! But that is another rant for another day.
Suddenly I was afraid that my readers who run Chrome weren’t able to see my blog correctly. So I grabbed Stuart’s computer and went to my blog as if I was just a lurker, and no troubles. Yay! At least all you Chrome users who are reading my blog shouldn’t be having any troubles.
Another suggestion from a techie reader, try using Firefox to run my blog through. So I am. Right now.
Look, I can add tabs! I can search! I can add photos! I can do all kinds of things that I couldn’t do before.
I wrote WordPress, I didn’t get a reply…not even a reply saying, we’re sorry but the volume of email that we get means it will take a long time before we get back to you..or something like that.
Nothing. I kind of understood..after all, I have a free account. But for some reason I have a feeling if I had a paying account I wouldn’t have gotten much better service. A week or so after the first email I went back to support to see if anyone else had reported a problem and to try to write them again. I got a message that said, WordPress Support is closed until March 6th. No reason, nothing. Just try the forums. It was at least a week before the 6th at the time, so I kind of wonder if I had a paid account would they have a special support team for me? I don’t want to talk WordPress down. They do a good job for a free service, and I personally know no one who has the paid version…or if I do we haven’t spoken of it. I’d just like to know if they give more customer service to their paid accounts.
So for now…my WordPress Blog and Chrome will be parting company.
Firefox will be my browser for now. I used to use Firefox all the time, then hubby suggested I use Chrome and so I did, now we’re both talking about going back to Mozilla…Firefox.
I may even put it on my phone. However, I think my Smart Phone is smarter than me.
I have much to post about. More about my new diagnosis, my feelings, my crazy head…and just weird things about all of this. Plus, I’ve received a couple of awards from some very generous bloggers!!! I really need to take time to post an acknowledgement and pass them on.
I apologize if it takes me a little longer. I’m still not feeling well. I feel better for a little while, then awful for a while….then back again….it’s a crap shoot. I’m trying to read as many blogs and emails as I can, and comment on some, but on any nice days where I feel nice, I’ve been taking advantage and getting out of the house, even if it’s just for 3o minutes. But sometimes, that’s the only 3o minutes I have in a day. (I used all my spoons)
Hope you are having a nice beginning to March! I’m hoping to get a few little seedlings started soon…I wish I had already. I want to at least have my herb garden again! And the wild flowers. (maybe smaller ones this year.)
Love and Light to all!! I do have much to talk about. I hope we can all get a great discussion going about how we handle things when we think we’ve gotten everything handled and accepted, then something new happens. I’m trying, but this is a rough one.
Today was a breath-taking beautiful day. The sun was shining, it was in the 80’s F….yes the 80’s on the first day of March! A good friend of mine just got married! I’m so very thrilled for her, you may remember me passing along the candle lighter award to her….Congratulations Fiona and Jeremy…I adore you!
I slept longer than I have in a long time, I woke up with a minimal headache (my normal every day type of headache). I was still seeing double but it didn’t seem to last as long. I lounged in bed for a while with the window open and enjoyed my breakfast. Then I read a bit on the computer and decided to get dressed for the day. We were refinancing out house to a better rate, and we had to sign all the papers at the lawyer’s today, so I had places to go. I decided to start getting ready very early. About 2 1/2 hours early. Just in case. I wanted to do a little then rest, do a little more, rest…eat lunch….rest….you get the idea.
You would be so proud of me…I know I was. Darn I should have gotten a picture!! I French braided my hair. I’ve never been able to do that! It has always turned out lopsided or with straggling hairs, but usually it is a “Dutch” braid. A French braid lies flat against your head the Dutch braid is kind of backward, it looks like a braid stuck to your head….it sticks out. It’s kind of neat, but not what I wanted. And…imagine this, I did it on the FIRST try!!
I tried on a few things to wear, but the one’s that I don’t look like a blimp in were too hot, I admit I was getting sad and upset. Then I thought of a white tank top with an orange cap sleeved sweater over it that has one button around the abdomen that makes me look much thinner. I actually put on makeup!! I got ready, got dressed, and got down stairs….all by myself. I was beaming with pride.
Stuart and I decided if I felt well enough after our visit to the lawyer we would have a date night and go to Fishmonger’s. I LOVE crab legs. I know he just got them for me on Valentine’s day…but it was so nice to have a date night with my hubby. In a restaurant right across the street from where we met.
Fishmonger’s is one of those little seafood restaurants that make you feel like you are on the Carolina Coast.
This is the type of tables they have there.
I am having a very hard time with my hearing. Stuart needs to step up his ASL practice. On average I have to ask someone to repeat themselves at least 3 times, and after that I just drop it. It’s too embarrassing. And it’s usually just some small talk. I can’t remember if I’ve mentioned it here, and I’m too tired to look back and finish this so I’ll give you the short version. Saw Audiologist on Monday. She thinks I’ll need a cochlear implant soon but the requirements change with insurance companies. We have new insurance starting this months. (they are going to love this) The first question Stuart is going to call and ask is what
their criteria is for covering a cochlear implant? The surgery cost between $30,000 and $100,000 and our out-of-pocket will be $150 Yay!!!
So I may have told you…forgive me.
So while we were out, it came time for my medication. All of a sudden I had a sharp pain in my head, I asked what time it was, exactly time for my medication! I asked if we happened to remember….ooops, nope. So I was 2 hours late taking it. By the time I got home, I was not able to walk unaided, I was slurring my words, I had to really concentrate to understand things…..it’s kind of funny, in a way I feel like I’ve taken some drug…like a downer or something. But it’s all being caused because I missed my medication. Ahhhh!
Right now I’m running a fever again. Every night, only at night. Strange huh? I take some Tylenol it goes away.
I still have a lot fo figure out with all of this, and it will take some time. It is apparent that I’m getting better with the side effects and I’ll probably get even better when I get some potassium (Diamox is known to deplete potassium.) I have been trying to eat a banana a day, but it’s hard when that’s the cap on the amount of fruit I can eat in one day. So we went to buy some and the store was out. How rude!
I’ve been watching these cooking shows and now I’m just dying to cook. But I need to be more steady on my feet for that. Perhaps I see some slow cooker meals in the future. (much less dangerous, I can just instruct Stuart.) I bought some herbs recently, and got a free ounce of Saffron….oh….what will I do with this delectable spice?
Also, if you have never heard of or tried Pot Herb – it is a mixture of Chives, Chervil, Parsley, Thyme, Marjoram, and Bay leaves. This was delectable in Chicken Soup..and just on chicken….I can imagine so many things to do with this blend…why have I never heard of this french blend of spices before?
So…
What a difference a day can make. Do I feel this much better from all the well wishes? The joyous feelings I have for my friend? The fact that the Topamax was uped? The beautiful weather (you know I got to take the top off!!), or have I once again, simply decided enough. I can’t stand to live with you like that! Get up! Pick yourself up…even if you need help, and find something that satisfies you. even something small…and build it up again.
That’s why I say those silly expectations I had for this life…they must be fluid now, and change as I do.
I know I’ve talked about this topic before. We all know I’m not going to kill myself. But I find myself many times a day thinking….no wishing….that this would just end. I’m simply so very tired. I hear myself saying it all the time….I’m so tired. I didn’t know I was fighting so hard before, but then when everything was drained from me, and I was left cold and alone with just me and my illness, I realized I had been fighting….and now I was losing.
I don’t want to die, and frankly if I did, I’m way to scared to do it myself! The thought of the pain, the morbidity, the mess, who would find me, and my poor, poor Stuart. Oh no, I couldn’t do that.
But I do want it to end. Yet, I know the best I can hope for is that it will get a bit better. It will never end…until I do. And that’s not what I want…Really it isn’t. This past month has been a complete terror to me. It has worn me down, beat me, and made me into a person I often don’t know and don’t really like any more. I never thought that my diseases might kill me until this past month. The pain, the sickness, I got so very, very tired…I just could not see going on. I could not understand how anyone could get this sick and not be dying.
I don’t believe I’ve explained all the details of my symptoms of those 25 days, I just gave the high-lights. You all know about the migraines that varied in intensity on a scale of 0-10 (see my photo scale above) between a 6 and a 10 EVERY DAY. I had constant disequilibrium, and intermittent vertigo EVERY DAY. I also started to have new symptoms. For one the vertigo was not like the vertigo I get with Meniere’s (thank goodness). Usually it was positional. If I was lucky I could find a sweet spot and find a place where if I were very still the vertigo would stop or at least slow down so slow that I could handle it, but often I was stuck in that position for hours. I have also been having symptoms with my eyes. Double vision with my left eye (always when I first wake up and when I’m very tired). I see shimmers or movements out of the corner of my eyes. I often think someone has walked by, but I’m alone., and the last one I was seeing shadows and lights that didn’t match up with the lighting in the room. I felt like a ghost was following me.
Now, I’m on the new medication, Diamox! Things are getting better…yes on some points. But the Side Effects are not fun.
Please know I have talked with my doctor about all of the following side-effects, she said most will subside, and if certain ones get worse to call her immediately. With that said, these symptoms are driving me crazy.
tingling in the extremities.
drowsiness
excessive thirst
excessive urination
fever (this one we are watching, right now it’s low grade)
confusion
loss of appetite
and all of those that I’m already having….you know….things like….
dizziness,
nausea – vomiting
this one I just love…Headache! (I know that’s incase that get it too low, but dang!)
muscle cramps
more bruising….well, let’s see doc, I fell down in the bathroom night before last because I was so confused from this drug, so I’ve got a lot more bruising, does that count.
Oh, my goodness, I do sound like a sourpuss don’t I? But sometimes don’t you just feel like the cure is almost as bad as the illness.
And can you tell me why…all you very wise people out there…why is it bothering me so very much that I can’t get out and go anywhere or do anything that I want when I want? I’ve barely driven in 3 years, but NOW I’m pissed because I can’t go somewhere when I want, and I’ll probably get sick before we get there and will have to come straignt home. But oh…it just bites my butt.
And I’m very grateful that Chris and Penelope have been here, he’s been wonderful at cooking dinner, but even though I don’t feel like cooking..I’m beginning to feel funny about him being in my kitchen all the time. I think I’m afraid he’s a better cook than I am and I’m jealous. But I’m also jealous because, I want to be in my kitchen making new things, creating new dishes with the new spices I just bought. Oh…so sad. I miss my kitchen.
Please forgive this, but I’m having a hard time with Penelope’s complications. They have found out she has pregnancy induced Intercranial Hypertention…Yeah, High CSF! What are the odds. So I have to hear all about it. But in 2 weeks when the baby is due, her’s will most likely be gone. Very rarely does it not go away when the baby is born. So I think I’m a bit jealous of that. She gets cured and gets a baby at the same time.
My lord, I’m pitiful. I’m jealous over the stupidest stuff. But really I’m very glad they could stay here and be comfortable here. I’ve baredly seen them. They seem to be doing fine. Penelope stays lying in a dark room a lot. I find sitting up much more beneficial to me when I have a high CSF headache, but to each his own I guess. From what she’s told me about the guys who’ve given her LP’s I have not been impressed.
We dropped by Target on the way home today and I bought something that cost $1.07, I gave the woman $!.12. She just hit the total button and put in the money and then had no idea how much I gave her or how much she should give me back. You could see this complete blank look on her face as she looked at the receipt. I said, “the change should be 5 cents, I gave you a dime and 2 pennies.” No you just gave me a dime….oh, I was already ticked off that I had to beg to drop by Target on the way home, or normally I would have said, why don’t you just keep the change. But no, not today. “NO, I gave you 12 CENTS, you owe me 5 CENTS, and I don’t want pennies.) She slammed the 3 pennies she tried to give me in the drawer and gave me my nickle. and I didn’t feel bad about it at all , until just now. And still I don’t really. People do not take pride in their jobes any longer. I used to cashier. I was never more than 5 cents off….over years and years at different places. People need to take pride, no you may not be getting more than minimum wage, but neither was I. However, I still did the best job I could. Is that so wrong? I had a job managaging an art gallery, and worked part time at a little store making minimum wage, I worked just as hard at both. When you are interviewed and you are asked if you are willing and would like to do this job and you say yes….then you do it!
So, this post has gone from me wanting to give up….I’ll talk more about that later. I’m not giving up…but I am changing those expectations!!
To having a good work ethic, and I haven’t worked in 8 years.
Picnic with Ants 