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 
Wendy, As always I am horrified by these attacks you get. You and Stuart seem to handle them, but I can’t even imagine what it’s like when it is going on.
I too know that confidence we build up in ourselves…we can do it…we can do it, but one good afternoon doesn’t mean the next day will be just as good. And usually it’s not. But we are hard-headed women and
everyday we wake up optimistic…oh yeh…I’m good, then we get up and fall on our faces.
I rested for two solid days so I could go see my Danny’s band last night. I am so glad I made it, and it was hard to not jump up and dance and scream while they were playing! But I knew if I did I wouldn’t last the whole night. I am paying for it today, but still taking it easy.
That story about the sign language teacher is just not right. She needs to know your limitations. I would think that the whole class would be treated as “non-hearing”.
I have had that feeling while out grocery shopping, and once in the drug store. I left everything in the cart and walked out. One of those times I was near the Pepsi aisle and I just sat down on the cases of pop. It was that or lay on the floor. That is why I go nowhere alone anymore.
Hoping these attacks will end soon, or at least calm down. And, I get the poop thing…embarrassing but what can you do?
xoxomo
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Mo, I’m so thrilled that you got to see your Danny play.
Unfortunately, for the Meniere’s there is really nothing I can do to stop an attack or predict one. They just hit! No matter how much I rest and take care of myself, they will come from no where and flatten me.
I’m very happy the last two days weren’t as bad as they could have been. And happy I was able to have a good day on Thursday.
I agree, I thought when I told my teacher I am hearing impaired she would understand and take that into consideration. She acted like she would, but she doesn’t. I’ve had to say something at least 10 times during each class…I’m sorry could you repeat that I can’t hear. Finally during the last class I gave up, and when we got in the car I just cried and cried. I can’t do that every week.
thank you for feeling for me. You make me feel so good, the thought that I can help someone who doesn’t have this disease really understand it….that makes this blog worth while.
hugs to you my friend. wendy
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Wendy, honey you don’t need that ASL class…you need a class for people who are hard of hearing. http://www.ncdhhs.gov/dsdhh/rrc/raleigh/raleigh.htm is the link for services in your area. If they are ones you have been working with then I think it needs to be explained to them what you are up against. I am counting the days for when we will be in NC. Perhaps there is some way we can help. Jodi and I both took ASL classes and she is much better than I with it. She learned a lot from being around my sister who used to be a professional interpreter. Since I know it must be very hard for you to manage finding what you need I am more than happy to help. Just let me know. Once in awhile I come up with resources for people, especially those I love. ❤ HUGE HEALING HUGS, Lisa
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thank you Lisa. I wish you were here all the time….I miss you….and could use your help. (yes I say this with tears running down my face.) I did get in touch with the people you sent, when I read about their services I thought…yay, they can help me. I explained my situation, and they gave me the name of 3 places where I could take ASL classes….at the time all the classes were starting months away. These classes aren’t cheap. One place they suggested, is at a Raleigh Parks and Rec place. they do meet every week so we considered it, but it’s $80 for 4 classes…how much are we going to learn in 4 – 1 hour classes? The class we are in now is once a week for 11 weeks, 2 1/2 hours each. It’s a continuing education class through Durham Tech. We really thought this was going to be a good class, but I can’t feel like this every time we go. However, I really hate to lose that tuition money. Around $400 for the two of us. Right now I’m dumb struck by the whole thing. And have a bitter taste from it all.
If you can find something…I’m open for suggestions.
when do you think you will be here? can’t wait to see you. wendy
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I’m horrified that of all places the ALS class is so horrible, and not understanding. I just can’t believe it but now you know better and will find something better suited I hope. I’m so sorry you had those bad days, terribly bad days but try to remember that one FABULOUS DAY when you went out for a spin (SORRY) in the car and felt indpendent and wonderful. This whole husband embarrassment stuff, I get it. But, you know what, you would do the same for him in a second. And, my husband went through childbirth with me twice and trust me honey, you see the same shit (and I mean shit) there too. It’s not for the faint of heart. But we do things for our loved ones and for our friends because that’s what people do for those we love and care about. I just wish you lived closer so I could help you more or at least we could watch tv together and sit and talk and drink something healthy like tea or soothing like ginger ale. Hang in there, you are one of the strongest people I know. Here’s to better days! Laurie
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Laurie, I am so glad others find this ASL class as disturbing as I have. I really don’t know how to find a class that will be better suited, it was hard to find this one. (and boy do I hate the idea of losing that money…the tuition wasn’t cheap.)
you know if you hadn’t said “sorry” about the spin remark, I don’t think I would have noticed. I was just thinking about how nice it was. I will drive some again. But normally with Stuart or someone in the car with me….and if not I won’t go far! (I went about 12 miles from home on Thursday…all highway, then I stopped at a little place and got a drink…got flirted with! People love my little car! then headed home…it was a nice day. One I won’t soon forget.)
It warms my heart when you said we could just sit and have tea. I do miss seeing friends. I really feel that most of my friends, are now just friendly acquaintances
thank you for your thoughtfulness. love wendy
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Wendy…of all you wrote, the words that struck me were “I will be able to handle it”. Yes you will!
You have already, and you will continue to face your struggles with confidence. You are strong. You are capable. Keep the faith!
Deb
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Deb, I’m glad those are the words that stuck with you! I mean them! And I won’t give up on having the best days I can when the symptoms will let me!! love w
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The good, the bad and the ugly. It sounds like the inside of your wonderful mask.
My heart goes out to you Wendy. I can NOT begin to imagine what all this is like for you.
Sending peaceful, stationary love and many xxxxxxxxx’s
j
Total insult If the teacher in the ASL class can’t accommodate to someone who is hearing impaired . . .my mind can’t even grasp that.
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Judith, so glad you liked the mask! I was rather pleased with it after I finished it. I hated that I couldn’t just dive in and do it in one sitting, but working around this wonky head of mine, makes me do things on a crazy schedule. You were right, I was thinking too much about the outside. When I took away how I let people who would understand see me and just thought of how I try to let strangers, or people who don’t get it see me…then it was easy. (someone told me yesterday that the outside of the mask really did look like me…my persona….funny, I thought this specific person was seeing the inside more.)
I’m glad others are as confused about this ASL class as I am.
thank you for all the encouragement. xoxoxox w
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The Good : What can I say, it is beyond good, and amazing that you got to be free and independant and have it all go so well 😀 I smile everytime I think about it !
The Bad: Thats disgusting !, you would think that of all the places, that the ASL class couldnt cater for someone who cannot hear ??? really if i didnt make me so mad it could even be funny in a way..so ridiculous!
The Ugly: Oh I have been there ! I totally lost my dignity when I got a bad attack and Mr f didnt know what to do and took me to hospital (Yay for going in the car with vertigo…NOT) i diarreahed myself the WHOLE way all over the car whilst vomiting into a big bowl and had to get whheled through the main entrance in front of everyone like that !
In a way i guess it means we have absolutely nothing to hide from our men do we ! I would definitely take the diarreah over the vomiting though, i find the vomiting lasts for soooo much longer. Stuart is an angel for doing that, i think its sweet, dont be embarrassed, I had another one start when we were out walking one morning and had to try and get home and ended up having to sit in the gutter and diarreahed myself AGAIN and ended up trying to walk home covered in it while doing more, then taking as much stemetil as i could.
Im sure stuart doesnt even mind, or even think about it, I know Mr F doesnt. Sometimes i make jokes about it because it makes ME feel better about it and it worked wonders..everytime we got to the hospital now (even though it was 2 years ago that it happened) i say’ I better put a plastic sheet on my car seat first LOL’
and thats just it, you picked the right moment, and you went out and had fun, take iyt as it comes and enjoy 😀 xx
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Fiona, thank you for making me feel better. I’ve had a few accidents myself. I’ve had to go to the hospital for an attack twice. Once before my diagnosis, the second by ambulance! I was hallucinating and everything….it was bizarre, I thought I’d been through everything..but that was rough. And they really didn’t do any more there than we do at home. so I won’t go again…unless of course I’m out of it and have no choice I guess!
Stuart is a love, and it sounds like Mr. F is too. They’ve seen the worst and still love us and in my case married in your case is soon going to marry…us. Granted mine got worse after a few years, but he doesn’t see it as worse, he is so great about it. I was the one who freaked and wanted to leave him because I was such a burden and he deserved so much better….he thinks he has the best thing ever, so who am I to argue. Well, I argued a lot, that’s why we started seeing a therapist. : )
you always know just what to say. love and hugs always wendy
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I wouldn’t have even considered the fact that an ASL class wouldn’t be accommodating for the hard of hearing. Ugh! I wonder if there is an online course you could do that would be less expensive (instead of or in addition to this class)? I’m so sorry – you went out to improve your quality of life and ended up only feeling more frustrated. Not fair.
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You are right, that’s exactly how I feel.
I was talking about it on the Say What Club email group (a group for people who are hard of hearing, deaf, or a loved one of someone who is…the group I’m in is all Meniere’s people) I was shocked that people said they have found that to be the norm from teachers who are hearing. It’s better to have a deaf teacher or a hard of hearing teacher. (sorry, I don’t have that many choices around here. And I don’t live in a rural area…I feel so for those who have no resources.)
I have been looking into some on line classes, but it’s so hard to get practice, and to know if you are doing it right. We need feedback from someone who is fluent.
it will take more research.
thank you for your outrage. I have been! I simply can’t imagine going back in there. My chest gets tight just thinking about it. Now I’ve been having vertigo attacks daily for 4 days….I’m wondering if part of it is because I am so stressed out about all of this.
*sigh* why can’t things be just a little bit easier?
hugs wendy
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I’m sorry, but I would go and make a big damn stink and get my money back for that class. It is obviously a class to teach hearing people how to sign. The teacher is not accommodating you. Your husband can’t repeat everything because then you’re missing half the class. You guys deserve a refund. I would make a huge stink. Then I would go to a class that was specifically for the hearing impaired to learn ASL. They are probably worth the money because they are trained to teach YOU! You need something that is gong to be positive and less stress–and work for you! I am a battle picker, and I would fight over this one.
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Rita, Yep, I’m a battle picker too, and I would fight more for this one if it were just me. Stuart is more the type to not make a stink. I’m ready to invoke the ADA, and go off on these people. It should state in the write up for the class that it is not suitable for HOH or Deaf people. From what I’ve heard from her she thinks all deaf people learn sign when they are very young…well not all deaf people are deaf from birth! What about those who lose their hearing late in life?
eh! I’m so ready to tell this woman off. But it would embarrass my husband. and sometimes you do get more with a little honey instead of vinegar…but then sometimes the squeakiest wheel gets the grease…right? Right now I want to be that squeaky wheel.
thank you my friend. You made me smile…and I felt my hackles raise.
hugs w
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😦 I wish you were having better luck with the ASL classes. I know at one time they offered it online. I wonder if that would work for you.
I am sorry for you bad and ugly days. You are blessed with such a loving caring husband. Glad you got to feeling better.
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Muse, Thank you.
I’m feeling better today but still a slosh head. (since you aren’t a Meniere’s person, you probably don’t understand that term. But I’ve heard many Meniere’s patients say it. We literally feel like the inside of our head is sloshing around some times. Often right before we have an attack, or right after…or sometimes just because…and that is most annoying. When you first get Meniere’s there are tell-tell signs that say…you are going to have an attack. My biggest one was when my hearing dropped, but now that my hearing is so low… I can’t tell. Now I have attacks out of the blue. it’s very hard. Before I usually had about a 1 hour window so I could get somewhere safe, now they often just hit and I’m spinning.) That’s probably more information than you needed.
We are trying to find a different ASL class. I have a friend who is on a hearing loss/Meniere’s group I’m on, and she recommended 3 on line tutors. I think we may look into that. She is fluent now and she found the tutoring route the best way to go.
Thank you for coming by. I’ve been thinking about you an lot this week!! hugs to you. wendy
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OK Here is what I found so far: http://www.deaflinx.com/ASL/ASL.html was my main source and I found this self tutorial for online learning which I think is pretty awesome, although it would take a lot of time to learn. http://commtechlab.msu.edu/sites/aslweb/index.html This is a huge list or orgs for the deaf/hard of hearing http://www.nidcd.nih.gov/directory/area.asp?areatype=hearingtopic Facebook DeafLinx page http://www.facebook.com/deaflinx?sk=app_4949752878 Twitter page for DeafLinx https://twitter.com/#!/deaflinx Last but not least I found this as a twitter suggestion for captioned movies for your enjoyment http://www.deafaccessfilms.com/ Hope these help. Still not exactly what I was looking for but it looks like you did find some resources for education.
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Wendy,
I’m due to have Sac surgery in a week and I’m here searching the internet for good news. I feel discouraged by your lack of progress. Tell me, do you know if your results are typical? My Neurotologist is saying it will be a 2 to 3 week recovery. Right now I have vertigo about every 2 weeks that lasts about 4 hours and hearing and tinnitus fluctuates. What you’re going through sounds worse. Can you shed any light to help me understand if I’m doing the right thing???
~Nancy
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Oh Nancy,
I’m not just going thought Meniere’s!!! We have found that I also have Idiopathic Intracranial Hypertention (cerebrospinal fluid is squishing my brain)
The Sac Surgery…I’ve had it twice. The recovery for each was majorly different!! The first was no vertigo for months, and I’m sure that when I did have it again it was the other ear. But the pain was intense.
The second surgery….the one in December. I had vertigo…INTENSE! for a week..but it was positional. (and this is not that uncommon…it can happen, I know a couple it has happened to, and my doctor warned me it can happen.) The vertigo is not like vertigo from Meniere’s if you can find the right spot, and you lie perfectly still things will stay still, but I couldn’t move from that spot for a week. It was hard. VERY hard! And the doctor does think that was all recovery from the surgery. After the 1st week. Things got better. I started getting much better. I DO NOT think I’ve had a Meniere’s vertigo attack since the surgery. All of the vertigo I’ve had since then has been positional. There is one place where I can hold my head and things are ok. I’m also having a lot of other symptoms.
So if you are reading anything since mid January to NOW do not think it has anything to do with the surgery! I think the sac surgery was great. But I do think the docs often give a shorter time for recovery….it depends on what you consider recovered. You will be able to do things, move around…work if you still can…but you are going to have more balance issues and such for about 3 months. Just be aware. You will have more fluid around that area in your brain for a while so you may have more headaches…maybe not. It will be tender. My glasses still aggravate me after a while. So does my hearing aid. The scar is tender. But it will get better.
And I do think it helped with the Meniere’s vertigo!!!!!
I hope this helps.
I’m sorry if I’ve scared you,
I’m glad you commented, sometimes I forget some people just pop in and read and haven’t been reading the whole time and know all that has been going on. : )
good luck
and feel free to drop me a line if you have any questions or anything.
apicnicwithants@gmail.com
wendy
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Thanks so much for your reply Wendy. Everything is such an unknown with Meniere’s in general, let alone the surgery. I’m trying to stay positive. Every time I think I have it so bad, I find someone who’s dealing with worse. I’ll post you after the surgery. My best wishes to you. I hope you get answers and relief soon.
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Nancy, My Oto, once said that he believes Meniere’s is one of the worst diseases you can have that won’t kill you. It’s all the unknowns. And people simply react to treatments differently.
I do have a very bad case, I heard one nurse at Duke before my last surgery say she’d never seen anyone with Meniere’s have it as bad as I do…so don’t worry, you can do it!
This surgery, is rough at first, but you do get through it. Some people just breeze through it, no troubles, other’s are not as lucky. I fell in between on the first one, and on the icky side with the second one.
Just know, no two people with Meniere’s is he same, we are all similar, but not the same.
The biggest suggestion I have for anyone who is going through all of this, is to make sure you find a good therapist, my husband and I see one because it was hard for me to deal with losing my independence accepting him as a caregiver, and well just losing so much. It has helped so very much.
Good luck. I am sorry my posts scared you. I really do believe the Endolymphatic Sac surgery like I had is very helpful, and was very successful for me.
I’ll look forward to hearing about your progress. wendy
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Hi Wendy,
I’ve been thinking about you a lot lately. I wanted to give you an update. I’m 17 days post-op Endolymphatic surgery and doing pretty well. The recovery was not as bad as I expected. The best news is that I have not had any vertigo since the surgery! I walked into the hospital holding my husbands arm because I was so dizzy and left the hospital with no dizziness. Right now I’m dealing with a lot of popping and an echo that’s making me crazy. I feel like my hearing has somewhat returned. The ringing is still present, but not as bad as the first week of recovery.
This weekend I was able to go to my son’s baseball game, enjoy Easter morning with the kids, do some shopping with my daughter, and even go for a walk to the park. It’s amazing how we take the simple things in life for granted. The last three months before my surgery had gotten so bad that I could barely leave my bed, let alone drive. I don’t know what it is about Meniere’s that makes you so tired and lifeless. So far I’m very happy I had the surgery. I feel better two weeks after my surgery then I did three weeks before. Thank you for your writing, it’s very inspirational. Here’s to the “Good Days!”
~Nancy
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Oh Nancy, that is the best news!!!! And the easiest recovery from this surgery I’ve heard. (I haven’t heard many…but WOW!)
I have every belief that things will continue to go along just like they are…everyone I know…who haven’t had such a easy recovery….have all had success. The vertigo has been relieved. So keep your faith. and keep enjoying every day! one good thing about this…we have learned to never take the ordinary things for granted…things most people do and don’t think about, or even do because they think they have to…we relish those moments.
so good to hear from you. w
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