Yes, I am coughing a lot again. I’ve been coughing for quite some time, it got better, but it has gotten worse again. So much so I had a hard time swallowing because my throat has been so raw.
It started getting worse on Friday, I saw the doctor yesterday. She says my Asthma is not uncontrolled. So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.
This issue has been causing a lot of symptoms that we thought were from my other illnesses. I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times. I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right. Anyways, the test showed how much air you can expel when you blow out as hard as you can. It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.
So what does this mean? Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately. Especially when I go from sitting to standing. I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move. I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure. But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time. I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read. But reading takes comprehension and recall, things I simply haven’t had lately.
Having your oxygen levels just a little bit lower than it should be can really cause havoc. I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with. I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough. I can’t imagine losing any more breath than I have and being told I can’t get help. Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her. She demanded that my mother get oxygen, and she did. I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well. But that’s for another rant sometime.
So my dear friends, I haven’t meant to stay away so long, or so often. I simply haven’t had the energy. For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm. It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours. I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest. You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.
Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere. The big worry he has is leaving me alone all day. He’s worked at home for years now, even before I got sick. I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there. I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham. I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong. And it just won’t…enough of that!
I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper! Oh my goodness those things sure do make a difference. I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days. I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days. That makes me feel good to know that it’s available. She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds. She said they do often use that as a cocktail to help. And it has helped! I can’t take pain medication any longer…..unless I want to itch for at least a day. For some reason, I’ve become very sensitive to pain medication. We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them. And I can’t take NSAIDs by mouth, my tummy does not like them! So that put a big dent in how I could fight my migraines. Now I feel we are on the right track. I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.
There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap. He loves me so much more when I’m doing something.
I always hoped I’d never need it. When I made up my emergency kit it was more a peace of mind thing, not a real thought that I’d ever need it. On Wednesday, I was so grateful I had that emergency kit! (TMI -This post contains information that may be too much for some people.)
The day started off so wonderful. You can see that in the last post….but later that afternoon I was hit with an attack, and I was in public! We decided to go out and check out a few stores that carry allergy friendly foods, but we were hungry and thought we’d grab a bite to eat. (yes I know, too much food out…too much sodium! But I had steamed chicken with vegetables and rice, no sauce….I ordered smart!) We were sitting in the restaurant and Stuart pointed out something to my left and over my head, I glanced at it and everything spun around. It scared the mess out of me! First I started to panic, then I felt it was slowing down. I thought it was Migraine Associated Vertigo and would pass after I took my migraine medication and emergency pills. Boy was I wrong! I took the pills and things didn’t get better. I was getting sick. Very sick, and the world was spinning faster and faster. I handed Stuart my purse and asked him to get my emergency kit. I needed to cool down, and I needed something to throw up in (just in case). I have cold packs in my emergency kit that turn cold when you twist them…or hit them really hard. This was a wonderful thing. I needed to cool down my core fast. We left the restaurant as soon as I could stand. It had slowed down so I thought the medication was finally working and we could get home with minimal discomfort.
I was VERY wrong again! We drove a ways fairly well, then the spinning got so much worse. I couldn’t stand the car moving. I asked Stuart to stop the car, he couldn’t stop where we were, and I started to panic….”Please just stop the car!” It was torture. I was actually screaming before he could get stopped. He stopped. Later he told me he was not in the best spot. It was pretty public and he knew I’d feel uncomfortable. Frankly, I didn’t care, nor did I notice. I was throwing up (thank goodness for those little garbage bags I packed in the Emergency kit), and I was losing control of my bladder. I was devastated. We were in Stuart’s father’s car, it had just been detailed….I mean like an hour before we left in it….it has leather seats! How could this be happening to me, in my father-in-law’s Lexus? (luckily it was his older car, but still, leather seats!!) Stuart swears when he went to clean it up, there was nothing on the seat, and no vomit anywhere. I did miss some the last time and got it on me. I’m so glad I was wearing a reusable pad, I use them for my menstrual cycle, but I also use them most of the time in case I sneeze or cough and pee a little.
We got home, and got me inside. I collapsed on the couch and passed out. I woke up an hour later gagging, but didn’t throw up. My body was spasming, it feels like I’m convulsing (not that I’d know what that feels like first hand), this lasted what felt like hours. I got very scared. I was having a hard time breathing with the spasms, and for the first time during one of these attacks I was afraid of dying. Then i passed out again, but only for a few minutes. When I came to, I decided I wanted to try to get to the bed. We succeeded. Not without much difficulty, but I was out after that for a few hours.
I know most of you have heard my horror stories of my vertigo attacks before, but the main part of this recount is how much my emergency kit helped. In it I have cold packs (to cool me down), small trash bags (to throw up in), large Ziploc bags (to put the soiled items in…and bags that have throw-up in them), wash cloths (to wipe my mouth, and help cool me down when they are wet), extra meds (we always have my emergency pills on us, this is an extra safe guard and it has more meds than I usually carry), a card explaining what is happening to me…and I keep a water bottle with me (normally this is just to drink from, but when I’m having an attack it helps to wet wash cloths and I need to rinse my mouth).
I will never think I can go without that kit again. I was recently thinking it was taking up too much room in my bag, no more! If I go out with nothing else, I will have my kit!
I’ve been working on this post since Thursday, the day after it happened. I’ve had days and days of extreme disequilibrium. I couldn’t move my head at all without seeing the world move. It was like it just didn’t keep up with my head….strange. I just started walking some unaided yesterday. Today I feel better and can get around by myself, but I still feel a bit wobbly. I’m pretty sure this wasn’t just a Meniere’s attack. My hearing in my right ear did drop significantly, and hasn’t returned to its normal level…that’s weird for me, normally after the attack ends the hearing comes back…at least almost to where it was. We think I had another spinal “blow out”, and my Cerebrospinal Fluid Pressure (CSF) dropped. Stuart suggested the first night after the attack to not take my medication that controls the high CSF, it’s a strong diuretic and I couldn’t afford to lose any more fluids. But I started taking them again the next day after I was sure I was well hydrated. Then things didn’t get better. I was scared that I would feel that way all the time. I was having a big pity party for myself (sorry I didn’t invite you all). Yesterday morning, Sunday, I woke up feeling much better. I took my CSF medication, then I got up and fixed myself some breakfast. After making breakfast I turned and the world spun, dang-it! But it was at that time I realized my CSF pressure was too low. I had all the symptoms…the wooshy head, a headache when standing..ect. I went back to bed and lied down flat and the symptoms lessened and went away. Ah…yep, low CSF. So yesterday I spent the day lying flat. I’m holding off on the high CSF medication until I get signs of high CSF, then I’ll ramp back up on them.
Today I’m feeling much, much better, but still weak. My main goals for the day are a shower, and finishing this post…not necessarily in that order.
I’m sure I’ll feel better and better. The weather here is still gorgeous. We had an overcast day, but it was still nice. Today we have the windows open and are enjoying the fresh air.
Where have I been you ask? Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner. I logged on today and I had over 230+ emails in my inbox. Normally there are about 30…so how many days has it been??
I’ve been much sicker, if that’s the word to use, lately. I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.
I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair. It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil. I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall. My latest fight with the tub? I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub. Yes, I said, LYING IN THE TUB! Only me right? Ok, it was a little more than just lying still. I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have. But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes. So I’m thinking, no big deal. Then Stuart looked at my ankle and said, “Oh My!”. My ankle was very swollen!! My lower back hurt, but my ankle really didn’t. If you touched the swollen area it hurt, but not much. This happened last Friday night. On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again. (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.) So now you know. I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.
What else had been causing me frustration and just plan fear lately? I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November! We are leaving for Tucson, AZ the last week on October, we won’t be here in November. So they scheduled it for October 20th…I cried. I had the worst time with migraines this past month. Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work. I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up. Throw in some vertigo, and we have a great party going on. Luckily, the appointment has just been changed to October 3rd. This should be during my period, so it will be a real test. Big problem now? If it works I need to have another shot regimen in 3 months, we won’t be here. I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections. Actually, I doubt I will be able to, so it will be more like 5 months between injections.
Recently I’ve been having more vertigo, and constant disequilibrium. Frankly, it scares me. I’m pretty sure some of this is Cerebrospinal Fluid Pressure. We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one). Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low. I started back on the regular form of the medication yesterday, I hope this really is what’s wrong. Because the vertigo is scary. I’m proud of myself about how much better I’m dealing with it. I don’t panic as much, I’m sure I would if it was a severe attack. My biggest fear I have is that when a severe attack hits it will never end. I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day. Luckily, I was able to sleep through some of it. Then when it actually got to be bedtime, I couldn’t sleep. So many things going through my head. I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am. Today, I’m not spinning, but I can’t walk straight. I can’t move my head at a normal speed or I will fall down from the disequilibrium. In the past 48 hours, I’ve been to the bathroom once unaided.
OK…I know this is another venting post. But I’m scared. What if the change in medication doesn’t work? Then why is this happening? We’ll figure it out, or I’ll learn to live with it! Right?
The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do. Of course, he said that’s natural, part of self-preservation and all that…. I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did. And I mean it. The thought that others go through this is heart breaking to me.
I do have some good news about my hearing! (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.) Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer. I used the direct link cable and linked the computer sound up to my processor. I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different! I heard the movie!! I heard the characters the way they were supposed to sound! I really heard it all, just right! Isn’t that amazing? That gives me hope that one day my CI will give me sounds that are normal. Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more. It’s coming along! And The Lorax is my new best friend!
I miss blogging, I miss my blogging friends….but it’s hard to get started again.
Now I think of things that have happened since I’ve been away that you don’t know about, and things that are going to happen….so much to talk about I’m overwhelmed. Eh….maybe not so much. My life really isn’t that exciting.
I went through a bout of depression, that knocked me off my feet. By that I mean, I didn’t want to get out of bed. I’d wake up and think, what reason to I have to get up? I couldn’t think of a reason, and the sleeping side effect was not helping!
I know part of the depression started when Sandy died. But the biggest problem is a bit strange….at least to me, my therapist says it’s normal. I’ve been feeling better. The Meniere’s isn’t bothering much at all since the surgery in December. The Intracranial Hypertension (High CSF), is minor and under control with medication. My migraines are not as painful, but they are causing vertigo often! So much so that there is no way I’ll ever be able to drive again. The Migraine Associated Vertigo (MAV) gives me NO warning. I wouldn’t even be able to pull over to the side of the road, the world just goes crazy immediately. I can’t even walk around the block by myself, or do things in the yard. I tried one day, and it did not end up good. So I’m stuck in our house, unless I have someone with me (meaning Stuart). I know there is plenty I could do in the house, but when you can’t do things you want….well everything else kind of falls flat.
But I’m better. Really. It’s kind of funny. I was watching Sponge Bob Square Pants and he was singing, “I’ve got an attitude of gratitude….” And I realized I used to every day think about things I’m grateful for, and I hadn’t been lately. So I started thinking about it, and I felt better. Also we’ve been talking about fostering a dog, or perhaps adopting. Sandy was a rescue dog, and we’ve been thinking that taking care of another dog who needs rescuing would honor her. This has made me feel better about things, I really miss Sandy, and do NOT want to replace her, but the thought of honoring her by helping another dog….that makes me feel better inside.
Now that the sleeping has gotten back to normal, I’m feeling better about other things too.
We went to see the audiologist on Wednesday. I picked out all the options for the Cochlear Implant (CI) that I want! We expected to have heard from the insurance by now, but it’s seems to be a big old pain in the butt. And all I can do is, wait patiently. I’m not the most patient person!
Now, I’m started… let’s see if I can’t make a habit of this!
Today I’m using a prompt from the Extra prompts they sent us.
Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!
Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments. My days change from one to the next, a lot. If I’m feeling a bit better, I do more….
Here’s a recent weekend day.
After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.
Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.
2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.
4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.
5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.
9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband. Take my nightly medications, and try to sleep.
This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)
Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!
(written April 5th)
“Wendy” just write, don’t stop, don’t edit. Post!
Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.
Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer. What can I offer. I can’t even hear them to talk to them. I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests? I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!
This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!
I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!
I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.! I was so busy….I didn’t think it would end…
After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.
I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece. But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.
Now I’m falling apart….and I’m angry at myself about it!!!?????
I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad. I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me! I’m angry I can’t lose weight….I’m MAD AS HELL!
I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that. However, I know me, and I will. I’ll get it together, and get myself another lease on life. Life is good.
I have such a good husband. It can’t be all bad. I must think of the good days.
Let’s talk a little about hearing.
What? Okay, let’s not actually “talk”, let’s type a bit shall we. Ah, that’s better, I can understand this much better.
Recently I saw the Audiologist and had my hearing aid adjusted. By recently, I mean 2 -3 weeks ago. I was amazed. I was hearing things I didn’t know I’d been missing. For days I kept asking Stuart, “What’s that noise?” I do believe I was driving him crazy. He kept having to think, what noise? then he’d realize, oh, she heard the truck outside, or the plane over head…I hadn’t been hearing these things.
Then my hearing started to drop. Just like my left ear did this past summer. It started sounding like a busted speaker. Things didn’t just get quieter like it originally did when I lost the majority of the hearing in my right ear. In my right ear, after each Meniere’s attack I simply didn’t get all my hearing back, things got duller, softer. This is different. Things sound tinny. Broken. Today it’s a bit better, but it’s still there. For some reason, my left ear’s nerve was damaged. Dr. Kaylie said it’s not that uncommon with Meniere’s patients. He said the way I was losing my hearing in my right is more right is more common, but it’s not completely uncommon for it to happen like the left. My worry is, the left ear’s hearing dropped so suddenly. It fluctuated a bit for 3 months, then it didn’t come back.
I just tried to watch something on Netflix. I didn’t realize it didn’t have subtitles, but since I had my hearing aid adjusted if I listened with my iCom (it puts the sound right in my hearing aid) I’ve been able to watch some things without subtitles. This show started, I could not hear anything. I checked the volume on my computer, it was all the way up on the computer and on the site. I could only hear tiny little squeaks. I would not have thought it was anything if I wasn’t trying to hear something.
It bother’s me so much that Netflix has so very many movies and shows that are not subtitled!!! It’s ridiculous. They have a list of some they do have (it is not inclusive) and there is no way to sort it by genre or anything worth while. You can sort it by title, year, rating, and how many stars it got. Big deal. I’m looking for a Sci Fi movie…help me out here. Geez. We usually have to order discs because more discs have subtitles. Ummmm, if the discs have subtitles why aren’t they available on streaming? Really. Do you realize the market you are missing?? OK. Off Soap Box.
My worry about the hearing loss.
I know I will need a cochlear implant. I really don’t want to be completely deaf this late in life. But will they go ahead and do it with everything else going on? Or will they need to get this all settled first? What if I completely lose my hearing in just a few short months? Or less? (I know I’m looking on the dark side, I’m just looking at the worst case scenario, and remember I went through this last year. And right now I can barely hear!) So, tomorrow we are going to call the audiologist and make an appointment for a hearing test. So I can be armed when I talk to Dr. Kaylie. So I can ask him, if I need a cochlear implant soon, will we need to wait until the intracranial hypertension is under control first? Heck, couldn’t another hole in my head be a good thing? cause a little leak in there doc, just a slow leak…yeah….then I won’t need the shunt. hahaha
Does anyone out there run a fever at night? Or know why you might? I had all the test run recently…autoimmune, inflammatory…ect. all perfect. Even my fatty liver is not fatty. It has fat on it, but the liver itself is not fatty. Great news. No autoimmune markers….so yes, I am allergic to wheat, and intolerant to gluten, but I do not have Celiac. *sticking my tongue out at a certain doctor* Why am I swollen every morning? I had that answered by one of you lovely friends. Bed bound people retain a lot of water. So I’m trying hard to move more, but not move so much that my pressure gets all raised and I get a spiked headache. I’ve also cut way back on the salt.
Anyone else out there have hearing troubles? I know you are out there….do you think you will ever have to get a cochlear implant?
Yes, it’s still my blog here….it has many personalities…or something. Plus update on symptoms, and Spring.
You may read my blog from your email, and haven’t even seen it….but if you have, you may have said…”she’s at it again!”
and yes I am….I just didn’t like it. Too busy, and I didn’t like the page color.
So many things I can’t change on Word Press.
And I don’t have Photoshop right now, I’ve been trying to use Gimp…but I’m so lost with that program it were a real book I would have torn it to shreds by now. Ugh!!!
I miss Photoshop, I need to buy it, but I need to buy a teacher or student version…I really can’t afford the off the rack price. whew. That’s like the difference between designer clothes and thrift store, for the same goods! I just don’t get it!
So for now I wait.
Did you know on WordPress you have Pay to change the CSS on your blog? You have to pay to change your font….yes thank you can get around that one by writing in Word then copying over, but not all fonts copy over right. And I’m lazy. I’m just shocked at all the things that are now considered “upgrades” that used to be free. I know this is a commerce driven world, but it makes me sad when you start with something because it offers certain features free, then it changes. And I’m sorry, I’m not paying $30 a year to be able to customize my blog. Heck I can’t even do it, I’d have to get my hubby or my friend Vincent to do it. And I’d only do it about once a year, tops. If I found the perfect look, I’d probably change very few things ever again!
OK….So, I hope you won’t think ill of me during this transition time. I like the retro look. I’m going to try to put little ants in the header, and that will probably be it for a while. If I can get that done.
Symptom Update: My headaches, had decreased, but recently every time I go to sleep when I wake up I have a blinding headache, like a white light pierces my brain, the intensity doesn’t last for long…but the headache doesn’t go less than a category 6. So I’m a bit icky most of the day. But it’s better than it was!
Visual problems are better. The one that has really stuck around is the…oh I don’t know how to describe it…not only can I not see white on black very well, the white looks gray, but black doesn’t look black-black. It has this variable tone. Everything looks a little off in tonal values. Which is very odd for me. But I can still tell what color is what, I’m not color blind!! Yay! I just can’t tell if they have white or black added to them.
Very tired. But not sure if it’s the disorder or the meds, both can cause it.
The Meniere’s has been staying away. I think the surgery in December worked for that. The hearing in my left ear, is still gone. Right is more sloshy. Had that hearing aid adjusted and I keep asking Stuart, “what’s that noise?” and telling him to stop yelling at me. Funny huh? Now, which will come first, the cochlear implant of the shunt? Each are inevitable, it’s just which one makes its requirement known first. Of course, the shunt could be much more important for health reasons, but who knows how long the medication may work. So much to consider, so much out of my hands. (don’t you hate that?)
That’s all for today. Hope everyone is enjoying the First Day of Spring. (I don’t feel like we had a Winter.) Everything is blooming at once, my allergies have gone mad!!
I should be saving these for next month. : )
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.
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.
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!
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 won’t sugar coat it….I’m scared.
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!!
hugs to everyone who needs one today!