If you have Meniere’s, I know you know what this title means. For the past few days, (actually I think it’s only been two, but it feels like a week!), I’ve had the wonky, slosh head feeling. I dare not move my head too fast or I’ll fall down, really, I did this yesterday! I haven’t felt like this in a few months, I wonder what has started it now?
Could it be….
Hormonal Changes? It’s that week, but it hasn’t started yet.
Missing one of my meds for a day and a half? (that’s 3 doses) This is what Stuart thinks it is, but I’m wondering if part of that isn’t just him feeling guilty because he forgot to go and pick it up. (it was Buspar for anxiety and panic attacks – these started in January, I haven’t felt more anxious the past couple of days, just wonky!)
The weather? We have had some big weather changes almost every day. We’ll have beautiful clear skies, with a lot of heat…and then we’ll have a lot of rain all of a sudden! But this has been happening for weeks, so why bother me now? (it has been increasing my headaches, but I haven’t noticed the disequilibrium before.)
It’s just that time? We all know Meniere’s is NOT predictable. So maybe this is just the monster saying hello.
I’m still so grateful that I haven’t felt like this in a while, actually I’m not sure the last time. Not much since the surgery in December. I have to say, I’m thrilled with the results of that surgery. I have only had one mini vertigo attack caused by Meniere’s since my recovery. Yay! The Endolymphatic Sac Surgery was a big success for me.
(I’m still waiting on our insurance company to send the right type of letter to Duke, so I can get my Cochlear Implant surgery scheduled. They have been so evasive about this, how hard is it to say that this is covered under our plan as of this date with an in-network doctor. As long as our plan doesn’t change everything should be the same. NO, they send a letter saying they can’t give a predetermination, because the plan may be canceled or changed, the doctor may not be in-network…ect. They never even say if it’s covered by our plan at the present time! What a pain! So I won’t be getting my CI activated before my birthday….I’m so disappointed.)
I promise to write a post about this whole journey, and show which processors I chose, as soon as I feel a bit less wonky.
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!
There is so much I wanted to accomplish during my little hiatus. Paying more attention to the spiritual side of me, painting, working on some things in the house….
What have I been doing? Sleeping. A lot.
First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day! That’s never happened before. On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open. I’m wondering if one of my medications is bothering me, but nothing has really changed recently. I was taken off one drug, but nothing was added when this started.
On the 12th I had the Pneumovax -23 vaccine. It’s a vaccine for 23 different strains of pneumonia. Including one that causes meningitis. This vaccine is required for anyone who is getting a cochlear implant.
Unfortunately, I’m one of the people who had side effects to the vaccine. Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue. Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.) I think I’m in the more category.
This has been an experience. Most of the symptoms did disappear after the first few days. The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say. (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap. While I was asleep the diarrhea struck, it didn’t even wake me up! What a mess. That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired. We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep. But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.
Still I’m tired. It’s been 19 days. I don’t think this is just the vaccination. I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s. It is easier to get through.), some medication, and probably just some of the stress from everything. Plus, maybe some of the medication.
I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting. Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance. I’m really hoping this will happen soon. I’d like to have it turned on by my birthday…what a present that would be!
In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.
Until then, I think I’ll take a nap. After all I only slept 12 hours last night. : )
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!
photo courtesy of istockphoto.com
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.)
The previous Haiku’s all represent health issues I deal with. The first, a little joke about having a brain disorder, Intracranial Hypertension. The second, a challenge about losing my hearing late in life. Of course, anyone who is hearing impaired may have the same struggle, I do not know. And lastly. this haiku talks a bit about living with both Intracranial Hypertension, and Meniere’s. Each cause me to have vertigo and other visual disturbances.
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.
I HATE it when I want something…like food…and I’m brushed off…oh I’ll get it in a little bit. Then, he offers, “how about a (insert something tasteless that I’ve had every day for a week here)?” “NO! I’d like some REAL FOOD.” (sometimes I’ll even suggest something…”ummm, that’s so hard, and I’m tired.” Damn…the I’m Tired Card. That makes me feel guilty EVERY TIME.
But today, something tasty was discussed, pizza, or Chinese….Chris decides he’s going to make Chicken soup….hummmm…I – do – not -want – Chicken soup. I’ve had that a couple of times this week…. “Oh it’s just to make sure the chicken won’t go bad, we will be getting something else…something good.” “OK.”, I said dubiously. “What do you want?” I said to ask Penelope, I’m good with either the Chinese or pizza….secretly I really wanted the rolls from Pei Wei…but pizza is good too. (Really, I didn’t want to be difficult.)
He comes back….much later…how about soup tonight and we do the other tomorrow. Fine. {grumble, grumble} (Now he remembers this whole scenario much differently than I do….but we know I’m right. He swears I never said I didn’t want soup tonight….uumph!)
I got all flustered with him…I’m hungry…now, dangit…and I don’t remember what happened next or why but I told him to please leave. I did some other stuff on the computer and…an hour later…I finally called out for him…”OK it has been 2 hours since I said I was hungry is there a reason I’m not eating?”
I Want It NOW! (image by horrificbeauty - Veruca Salt - click to link to artist site)
(yes, you can see the red flames coming out of my eyes at this point….I think you may have been able to see horns and a tail.) I get sicker and dizzier when I’m hungry…and I’m already pissed that I have to ask for food like a puppy!
I hear…”the soup isn’t quite ready yet”…”Don’t care, it’s been 2 hours…I want something to eat NOW!” “I can find you something.” But he just sat there looking at me… (I actually shooed him away like, well, be off with you fetch me some food damn it! Why are you still here? …I vaguely remember him saying something about being a slave boy, but I was way past hearing reality at this point. Really? I did this? Why does this man put up with me?)
He brought me grapes. I almost threw them at him….but I took a deep breath and ate the 6 grapes I’m allowed to eat in a day…and waited. then he brought up some chicken with some mayo/mustard type dressing on it and called it chicken salad….I looked and didn’t comment on what he brought only that it was only about 3 bite fulls. “But the soup will be ready in 15 mins!” I thought…that better be some damn good soup!
Luckily it was. Oh, yes, it was some of the best Chicken Noodle Soup I’ve ever eaten.
Was it what I wanted tonight? No. Was it satisfying…mostly. Would anything else have been any more satisfying? Sadly..I doubt it.
Then came the humbling, groveling, feeling extremely guilty time….Yes by ME!
Sometimes, it just gets to me (this time of the month much more than others, unfortunately). I hate being dependent upon someone else for everything. I HATE to have to ask someone to do something for me that I use to be able to easily do for myself.
Soon I had another problem.
I have been smelling vomit on and off all day.
I have not thrown up today, or yesterday even. I did wake up last night very sick, feeling like I was going to vomit and I did gag a few times but I did not, I repeat I DID NOT throw up!! So why do I keep smelling vomit?
I smelled my clothes…no, but I washed up at the sink and changed them any way.
My pillow case, no.
My sheets, no.
Finally this evening, I asked Stuart, do I smell like vomit? He looked at me, “I can’t imagine why you would. Everything around you is clean.” Still, I got him to smell me, and YES, I smelled like vomit! EWWWWW!
OK, Bath time. I was feeling better than I had been so it was time to brave the bath.
I ran the water, added some Epsom Salts for my aches and pains and got in….and got sick! OH…the walls started to breathe. I ran cold water over my wrist. Please do not make me give up my bath. I tried and tried…but no…Stuart was holding on to me and leaned over to let the water out. I cried. I looked up into his eyes with the biggest saddest eyes anyone has ever seen with tears rolling down my cheeks and said, “But I’m still Stinky.” Then I burst into uncontrollable sobs.
"But I'm Still Stinky." (Vintage Big Sad Eyed Child painting - artist unknown)
My dear husband got in the tub and helped me up, dried me off, and got me out of the tub. I sat on the toilet, and said, “of course, now I feel better.” Without a word, Stuart soaped up a wash cloth and gave me a sponge bath while I sat there. Very gently, with lemon scented soap.
He helped me back to bed. I looked at him, and said, “I’m not stinky any more.” He just smiled and said, “No more Stinky.”
**Please note: I started to post this last night. I was entering the photos when suddenly I went into a full spin. Stuart was kind enough to save the draft so I could put it out today. This is how life has been for the past 16 days. I may have been the bitch from hell yesterday, but I promise I’m not like that often, and he says it gives him a little bit of insight into what I’m dealing with…as long as it doesn’t happen every day. : ) I must say, having 16 days of severe symptoms and now PMS on top of it all, I was a volcano ready to blow.
Thank you to my darling husband for not throttling me. And by the way….that soup was damn good!!
Normally when I’m not feeling great, I turn to my blog. When I’m happy and want to share, I turn to my blog. When I’m mad, I turn to my blog. Well, you get the picture.
Lately, I just haven’t felt like it.
I’ve thought of much to say, but it all sounds like a big jumble to me. No real coherent thought. I’ve been happy, sad, mad, confused, in pain, sick as a friggin’ dog (where did that saying come from anyway? Or Weak as cat pee? that person evidently never smelled cat pee!)…see what I mean…all over the place.
I do feel I owe an update. Today is day 12 of feeling like crap. I’ve decided to name my Slosh Head – Alvida – after a famous female pirate. My head feels like I’m living on a very rocky boat, I’m sure the first Alvida (often spelled Alvilda) spent many days on a rocky boat, hence the namesake.
Alvida cannot seem to get her “sea” (or in our case, very rocky land) legs. We wooble..but unlike the Weebles we can fall down.
I had a-n-o-t-h-e-r lumbar puncture (LP) on Monday. This time it actually appears they caught the high pressure before I had a blow out! It was the highest it’s ever been..then Dr. Gray said something that confused me (of course that’s pretty easy to do right now), she said, that the pressure doesn’t take into account volume, and my volume should be higher right now because of the excess fluid I still have after the surgery. So, can we trust this LP at all? She did a little testing. She added in 3cc’s of CSF (cerebrospinal fluid pressure), and I started to get a headache. She started to take some out, and I started to feel better, then she took out more and I felt weird. She took out 10cc’s all together. (I think that includes the 3cc’s she added….again, confusion).
"Hope" for Dr. Gray - Thank you for giving so many people hope.
I made Dr. Gray a piece of art. I’d been working on it for a while, if you’ve been on my blog Create To Heal you have seen it in progress. I still needed to color quite a bit of it, but I finished it just in time. She loved it! Just gushed. Said she was going to frame it and just went on and on. I’m glad it made her happy. She also said, we could come by and see her anytime, I didn’t have to be getting a hole in my back. LOL.
While in recovery I started to feel MUCH better. I could turn my head without getting sick, I was happy. Then I got up to leave. Ugh…not as good. After we got home and I ate dinner the world began to move again…Dang-it! But Dr. Gray said it would take some time for things to level out. She put me on a small dose of Topamax, to see if we can keep the pressure lower, we will up the dose as needed. Hopefully, we’ll figure this out and I’ll be able to move around soon with out triggering a full blown vertigo attack. Not feeling like I’m on a boat would be nice, but not spinning some every single day would be a miracle right now. 12 Days! TWELVE DAYS! But I can handle it. I know I can. If it ends up that this is the way it will be I’ll figure out a way. Perhaps I’ll need to wear a neck brace so I won’t move my head to fast? We’ll figure out a way that I can deal with it some how, some way. Wow, I just really surprised myself! I haven’t been feeling the most optimistic lately.
After the coldest night I think we’ve had in a very long time (it was in the 20’s F here), we went to the library the next day. Guess what we saw out front?
This photo was taken February 12th!
That’s all for now.
Alvida is telling me that she is not going to allow any more!
This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….
The Good
On Thursday it was a beautiful day. The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February. I decided to take a drive for the first time since June. I haven’t had vertigo for over a month so why not? I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road. The top was down in my little car, and I had a blast! What a milestone!!
Not so good– we went to our ASL (American Sign Language) class Thursday night. This was our second class. I’m not sure I’ll go back. I keep telling the teacher and the students I’m hard of hearing. I’m so very lost in the class because i can’t hear what’s going on. If Stuart tries to tell me what I’ve missed then he misses something. I was so upset, I teared up 3 times, and came very close to just walking out. To explain some of my frustration,, we have exercises where we each say things in sign language. Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language. (note, this is just one example). I do not see how I’m going to get anything out of this class. Stuart is going to write the teacher. One huge problem, they allowed too many people in the class. So there are 16 people in there and I’m the only one who is hard of hearing. I feel so isolated and sad. The one place I thought would be more understanding, and help me, is simply ignoring my needs.
The Bad
Friday I had slosh head all day, and was afraid I was catching a cold. The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I wasn’t that worried about it. Probably just barometric pressure change and allergies. Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining. We decided to go out and do some things. When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around. I tried to brush it off as a little disequilibrium but couldn’t. We went to the little cafe they have so I could get something to drink and take my pills. I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor. We hurried and bought our little bit of groceries and headed home. Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to. I then took another Valium. I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car! Wonders upon wonders it worked. When we got home I was still pretty off but I knew the worst was not going to happen.
The Ugly
** some of the following may be too graphic for some readers.
Today I was just waking up and stretching when I felt my husband kissed me. A pretty nice way to wake up huh? The first thing I really noticed was how loud the tinnitus was. My head was still a bit sloshy, and today it was also screaming at me. Since I was a bit off, Stuart made me some breakfast and brought it up to me. (oh, I have to admit he does this a lot any way…what a guy!). After breakfast I felt exhausted and thought perhaps I should sleep a bit more. I put my sleep mask on and started to doze, suddenly I felt like I was moving. Stuart walked in the room and I told him, he grabbed me some pills. I had to go to the bathroom. He helped me there and left, but I ended up having to call for him to help me. I couldn’t stand, pull up my undies, or anything. He rushed in and helped me and nearly carried me to the bed. By then I was in full spin. I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository. *ick*
I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment. I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting. Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not. I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do? I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.
My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head. So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded! Oh my gosh, I had no idea that was going to happen. Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more. This was gross. I was so embarrassed and just completely grossed out. I kept apologizing and crying a bit. After that ended, the vertigo started to subside.
Stuart was so wonderful. He told me he’d much rather deal with the bed pan situation, than for me to throw up. He said it’s so much easier on my body. And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale. I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better. He’s very right though, the vomiting is terrifying, and much more painful. So I’ll swallow the embarrassment I guess.
I’m still slosh headed, and feeling a bit wonky. I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.
When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.” Very stoic of me, holding it all together. However, once we were in the car and on the way home, I broke down. I thought about how I drove just 2 days earlier, what if this had happened then? I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop. What if I had been alone? I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.
Even more reason to live every day as it comes! I do not regret my drive, and I wasn’t far from home. If I had gotten sick, I would have pulled the car off the road and called for help. I would have handled it! If I had been at the store alone…well, that would have been more difficult. I probably would have taken my pills and left the groceries. Gone to the car and called for help. I’d rather be alone in my car dealing with this than in a public place. I may worry, but I’m confident if the worst happens I will be able to handle it.
Picnic with Ants 