Every day since I started having the constant vertigo, I have tried to slowly raise myself in bed to the point where the vertigo wouldn’t stop then I’d got back flat.
This evening, I slowing got myself on an incline, then scooted up some more…and more….and I was sitting, without the world spinning.
Not only that, I pushed it even further!
I couldn't help singing..."Put One Foot In Front of the Other...."
I went to the bathroom without falling, or spinning!! I made it back to bed too!
I giggled the whole time!!!
I still have a lot of disequilibrium, and couldn’t move very fast, but the vertigo stayed away. It might not have if I hadn’t taken it as slowly as I did…but it’s much better than yesterday!
I must say, if I didn’t know other’s who have been through this just as bad as I’m going through it now, I would be VERY discouraged.
I’m nauseous most of the time, I still can’t lift my head, can’t get out of bed…every day I think…well, this is the worst day so far.
I’m anxiously waiting for a day when I think….Oh this isn’t as bad as yesterday!
The pain in my ear has increased, can someone please remove the ice pick that is being jabbed in my ear!
I’m also having intense pain down my neck, I can’t open my mouth as wide as I should, the whole left side of my throat hurts …. You know, I feel like I have the mumps, on just the left side.
I’m grateful that the worst of the pain is a sharp pain that doesn’t last very long. The aching pain in my ear, is always there, but it’s not nearly as bad as the “Out of the Blue, Slam me in the Head” type of pain.
My fever seems to be less than it was, but I’m still achy all over, and the swelling is almost gone. (see there is some good news!)
My ear still isn’t draining like it did the first time, but it is still bleeding a bit. Not a lot, but ick, blood coming out of your ear…need I say more?
So why is it that whenever I’m sick, things always get worse at night? I run a higher temperature, the pain is more intense… Stuart thinks it’s so very odd, but I remember as a child, whenever I was sick, I would always be worse at night. Is this strange, or do other’s have this happen too? Is there a reason for it?
I think that’s about it. I’m sad that this recovery is so taxing. I’ve mentioned before, when I close my eyes the vertigo gets more intense. It’s so very, very hard to fall asleep, or to sleep well. I am completely exhausted.
While I’m awake it’s a bit easier to deal with, but when I’m asleep, I’ll start to roll over, and Whoosh! goes the Vertigo (yes, you must say that to the tune of Pop! Goes the Weasel!)
Perhaps tomorrow will be a …. “this isn’t as bad as yesterday” – day!
Wendy with Headache and Vertigo - photo and manipulation by W. Holcombe
I knew it could be this bad, I’ve talked to many who had a very rough time with recovery from this surgery. But I had it before, so I thought my recovery would be about the same as the first time. Much pain, but not so much vertigo. Boy was I wrong!
If I move my head at all the world spins, very violently. This vertigo isn’t like most attacks, it will be calm, if I keep my head still. I can’t lift my head, I can’t turn my head, I can’t sit up, I can’t get out of bed to the bathroom…that’s right I said I can’t walk the 10 steps it would take for me to get to the toilet. I’m very lucky that my husband is so very supportive, and is not squeamish.
(caution for those of you who get grossed out…do not read this if you do.)
To be very blunt, you spouse should not have to empty your bed pan, or clean you up afterward, especially when your tummy has not been happy. To add insult to injury, I started my period yesterday. You cannot imagine how hard it has been on me to need my husband to help me with female sanitary issues.
The pain is better at times, and much worse at times. I keep getting very sharp pains through my ear. And I’m pretty sure the feeling is coming back in the ear itself, so the cartilage pain is beginning. The headaches, have been many, and harsh. Other times, I feel very little pain at all.
The swelling is MUCH better.
I have a call into Dr. Kaylie, unfortunately he wasn’t in the clinic today. Stuart has talked to another doctor, and they feel certain this is just one of those things that can happen. I’m not running a fever, the site is not red or hot. So we are not worried about infection. I keep thinking, if Dr. Kaylie said he wants to see me, how would I get there? There is no way I could get up, get dressed, go down the stairs, and terror of terrors ride in a car!
I had a tiny bit of drainage today. I still feel, if the ear would drain, things would get better. It appears my tube is either clogged or fell out. But even if it fell out, I would think the hole would still be open a bit. I know it was open the day of surgery, I closed my nose and blew air out the hole just to check. I admit, I was a bit scared of going through this without a drainage hole in my ear. Every person I’ve spoken to who had a rough time of this, did not have a tube. I was convinced that was the reason I didn’t have vertigo before. The fluid did not build up.
Here’s to a better tomorrow, and many days vertigo free.
I told you that you may get tired of these posts, I want to make sure to keep up with all the details of my recovery. As confused as I get right now, I want to make sure if a doctor asks me anything about this, I have a reference.
(sorry about 2 posts coming out today, I had the post for the PFAM carnival written before the surgery. Just had to proof read it. Not sure I did the best job of that, considering. However, it’s due today, so I thought I should post it too.)
Yesterday I woke with much more swelling and pain. Still no vertigo. But started getting pretty dizzy, after taking pain meds. There is such a fine line between taking enough so I can tolerate the pain, and taking too much to cause vertigo. Often the vertigo will come before the pain is under control. I really hate having to take pain medication. They make me feel drunk, and getting drunk when you have vertigo issues is not a good idea.
Had a great visit with a couple of friends last night. It was so good to see them, I haven’t seen them in a long time, but we keep up regularly through instant messaging and email. When they first got here, I was feeling pretty rough, I wasn’t sure I was going to be able to really enjoy the visit. But I knew these friends would understand.
When they first arrived I had a little bite to eat and took a pain pill, my first in about 9 hours. (I was really very hesitant after the way I was feeling that morning. I do not like the drunk feeling.) Luckily, the pain got better, and the visit was very nice! Plus, my friend brought me a bunch of clothes to try. (as I think I’ve mentioned before, I’ve gained a ton of weight this year, and I just don’t have anything to wear.) I haven’t been able to go through them yet, but I’m just thrilled I will have something to wear that doesn’t feel way too tight.
I had a rough time going to sleep, but seemed to sleep better once I finally drifted off.
Then I woke up this morning…what a difference. I started to lift my head to get up to go to the bathroom, and the world started moving. I put my head back down, things calmed, and I tried again…same results. I decided to wake up Stuart to have him help me to the bathroom. Again, I tried to get up, with his help this time, but the world went crazy!!! I laid back down, and things still were spinning out of control! Thankfully, it didn’t last long, but every time I tried to lift my head the same thing would happen. I don’t know how we managed it but we finally got me to the bathroom…ahh…relief. Getting back to the bed was rough, but once I was lying down again, things were much more stable.
The swelling around my ear was worse, but no fever, no redness, and it’s not hot to the touch. Thank goodness.
I decided to lay with my left ear down, to see if having the fluid drain some would help. I could hear it gurgle, and feel it, but very little came out. I slept for a while. Then I had to go to the bathroom again. Ugh. I tried and tried, and finally I decided it could wait. I feel asleep again. Stuart decided to call the ENT on call at Duke, just to make sure this swelling issue wasn’t something to be concerned about. She said, she thinks it’s just post-op swelling, she suggested ice at first, but we found out fast last time, ice on an open hole to the vestibular system is not a good idea. (Instant Vertigo!) She also suggested elevating my head. We slowly did this, first we got a thicker pillow, then added a pillow under my back (so my neck wouldn’t be at a severe angle), then added another pillow…now I’m at a slight incline, and the swelling has gone down quite a bit. I’m still having bouts of spinning, and sharp pains shooting through my head. Today has not been a great day.
This is so different from the first surgery. I didn’t have this severe swelling. (It has been swollen all around my ear, down my neck, sticking out about an inch.) My ear drained well the first time. I had a tube in my right ear, and it drained a lot. I also have a tube in the left ear, and I know it’s open because I sneezed yesterday and felt the rush of air blow through it, but very minimal drainage. I keep feeling fluid moving around in my ear, but only a very tiny amount is coming out. I did have some very red blood come out this morning, not a lot, but it’s not that clear gooey discharge I had the first time. I keep thinking, if my ear would just drain out, then I’d feel better.
The pain from the first surgery was much more intense after the feeling in my ear came back. The damage to the cartilage was intense. Question now is, if I’m this bad off now, what’s it going to be like when the feeling in the ear comes back?
I’ve started writing this post about mid-day yesterday, now it’s late Sunday night, and I’m just wrapping it up.
To sum things up, I feel horrible. Today has been very uncomfortable. I feel like I’m burning up with fever, but if you take my temperature I’m not. If I move my head, the world moves….sometimes much, much worse than other times.
(Please forgive me, but I did not reread this post for errors. I simply don’t feel well enough. No picture either? I really must not be feeling like myself.)
Tomorrow I should be posting for the next PFAM blog carnival hosted by Sharon over at Bed, Body and Beyond, submissions are due tomorrow by midnight, in whatever time zone you happen to be in! (Luckily, I wrote most of my entry before the surgery, so I just have to touch it up a bit.)
The topic? Why do we write? Please think about sending in your own submission. Sharon is great, and if you can’t make it by midnight tomorrow, drop her a line, she can probably give you a little more time. The carnival will go up on her blog on the 7th. So check out her call for submissions here: http://sharonwachsler.blogspot.com/2011/10/call-for-subs-pfam-blog-carnival.html
Surgery went well. I had an Endolymphatic Sac Enhancement Surgery. After much searching, I found that different doctors do different surgeries and call it the same thing. Basically had a Mastoidectomy. (surgical removal of the mastoid process) with extra stuff. Dr. Kaylie removes more bone so the sac can decompress (on its own) and will have more room to expand. Leaving the endolymphatic sac and dura with no bone covering it. However, most of this is under your ear, so it’s pretty protected.
Hopefully, this surgery will stop 70% – 90% of the vertigo caused by this ear. I had this surgery on my right ear in April of 2010, it appeared to work. But since I’m bilateral, sometimes it was hard to tell if my vertigo attacks were caused by my right or left ear. Sometimes I could really tell, but since my hearing has diminished so much, and the tinnitus has gotten so much worse all the time, it makes it harder to distinguish.
I got home about 7:30pm. Had to be at the hospital at 11:30am, surgery was to begin at 2pm, but it was delayed until after 3pm because they had to give me a pregnancy test. I told them there was no way I was pregnant even explained that because of my hip issues, we haven’t had “intercourse” in a very long time. They asked again, how I could be sure I wasn’t pregnant. I told them, “let me put it this way, there has not been a penis in my body for months, because of my hip pain, we get creative, but we haven’t had intercourse. And I haven’t skipped my period.” (they considered giving me a test anyway, but I peed right before they took me back, and since I hadn’t drunk anything for about 14 hours, there wasn’t any to come out.) The nurses accepted this, but come to find out, if you are of child-bearing years you must have this test, hospital policy. So I squeezed out some urine for them….and we waited….and waited for the lab to do the test. So that delayed the surgery, luckily I was his last for the day so it didn’t put anyone behind.
When they decided I just had to have this test, Stuart joked, “Well, if you are giving birth to the messiah we want to make sure we don’t cause him to have birth defects.” Only, Stuart would come up with that one!
Before leaving the hospital they did have my pain under control, but I was hurting quite a bit shortly after we got home. I was sick to my stomach, (lot’s of anti-nausea medication), and pretty dizzy. I slept some, but I woke a lot because of the pain. I don’t think I took enough pain medication until about 4am. Finally, it started to work. I’d wake up in a few hours, and take half of a pain pill, this seems to have kept things under control. One thing that was odd, I had this horrible taste in my mouth I just couldn’t get rid of. Tasted like plastic and medicine. I swear I tasted that same taste as they were putting me under. I don’t remember this ever happening before. It was gross. I’m also having some crazy post nasal drip, and a cough. Of course, my throat is sore from the breathing tube, but it’s better today too.
That big cup they put on my ear, filled with gauze and stuff, I swear it causes more pain than the actual surgery. There was too much gauze and it pressed on my ear. When you have a hole drilled in your head about the size of a 50 cent piece, you don’t really want to feel something pressing on it. Thankfully, we got to take it off today, I removed all the stuff from inside, ewww, and just put a little packing back in, now it feels better, and I can sleep with out the worry of rolling over on that ear. They said I could just take it off, but the ear will drain for some time.
I have a tube in that ear, so the drainage comes out the ear a lot. This is actually an advantage. My Eustachian tube is very sore, so I know it’s handling a lot of drainage too. If I didn’t have the tube I think I’d have a much harder time with vertigo and pain.
My main nurse during pre-op, Janice, was amazing. She was so caring, compassionate, and professional all at the same time. She looked pained to hear what I had been going through. I told her one of my mottos, “Life isn’t what I expected, so I’m just changing my expectations”. I didn’t say this to be profound our anything, I said it to let her know, I’m OK with things. Yeah, it’s hard, not what I expected, but I’ll make the most of what I have. She was really stuck by this. She said everyone could learn from that, so many people get caught up in the what if’s and can’t get past it to see what they still can be. Right before I went back, she patted me on the arm, wished me the best, and said that she was going to remember to change her expectations as things change.
I was so humbled, and touched.
They had a hard time getting in an IV, one nurse tried, and even though she gave me lidocaine, it really hurt and it wouldn’t go all the way in. Janice came in and took over, she had a hard time finding a vein, I remember telling her, I wished I could help. She told me I was such a good patient. She soon found a vein, and I didn’t even feel her stick me! Amazing. (about IV’s, I had another one in my other arm when I work from the surgery…wonder why? I’m very glad I was out for that one, it was inside my wrist, a very painful place to get an IV.)
Everyone was very nice to me, and very professional, but Janice was exceptional.
Now, I’m getting tired, and a bit nauseous. I’m thinking all this drainage, and post nasal drip, is making me sick to my stomach.
think I will take a nap.
For now, all is well…I may be posting a lot during my recovery. I want to keep up with all my symptoms, so I may get a bit boring. I thought of keeping a written journal of it, or on my calendar, but I know I’m much more likely to come here, and talk.
Thank you all for so much support! You cannot imagine how much it means to me.
What makes the world go round, and round, and round…I don’t really care I just want it to stop! Please…oh please! (I’m asking very nicely…please.)
Spinning world. Photo Manipulation by W. Holcombe
Since Wednesday I’ve had almost constant vertigo. On Wednesday, I had two vertigo attacks. On Thursday morning, I woke up about 6:30am spinning. I was dreaming, and in my dream things started to spin, I woke up and it was still spinning, not a good way to start the day! On Friday, I had a very severe headache with vertigo for most of the day. Today, I woke up around 8:30am, again, spinning.
This has been a turbulent week. Luckily, most of these attacks weren’t the gut retching kind. Most of the time, I’ve just had to keep my head very still, and things were bearable, but if I move, even fractionally, the world spins. Today, it has lasted all day. For the first 5 hours of the day, the only relief I had was when I laid on my side, with my head very still. If I moved slightly the world spun out of control. While lying down it was just a bit wobbly. Unfortunately, I also had some GI issues today, and those 10 feet from my bed to the toilet were a harrowing experience. Finally, things have calmed down a bit, but still if I move my head, the world spins.
I see Dr. Kaylie, my Otolaryngologist and Vestibular Specialist, on Tuesday. We have to discuss different treatments, including having the endolymphatic enhancement surgery on my left ear, or streptomycin injections (to kill the balance nerve) I can’t stay like this. My husband is looking for a new job, he can’t be afraid to leave me alone. I can’t be terrified to be left alone. However, it will be hard to undergo an expensive treatment right now. umm..hubby unemployed, COBRA for insurance. Not only are the COBRA premiums outrageous, but we still have to pay 30% of any procedure. I hate that healthcare is so unfair. When we get our bills from the hospital or doctor, it has the cost, then the deduction because we have Blue Cross, then the amount the insurance covers, then what we pay. (often just the co-pay, unless it’s something special, like surgery.) If we were charged the deductible amount, like Blue Cross is, we could pay for it without insurance, the premiums from COBRA are so high, it would cost less if we could pay that way. Our healthcare system sucks!
A little story about why Stuart and I got married when we did…. Stuart and I were engaged, but we hadn’t set a date. His mother had breast cancer, she had been in remission, but unfortunately, it returned. We didn’t want the stress of our wedding making things harder for her. We wanted to wait until she felt well enough to enjoy it. Unfortunately, the cancer spread, and she died before feeling better. (yes, if we had known this was a possibility, we would have gotten married sooner, so she could be there….hind sight.) The week she died, I found out I’d be losing my health insurance in 3 months. So we planned a wedding, fast. We got married on Stuart’s parent’s anniversary. In a way it was nice that we had something so joyful to plan and think about right after Stuart’s mother’s passing, but in an ideal world, we would have put more time between the two events.
Yes, you could technically say, that Stuart and I got married so that I could have health insurance. That’s just not right. We should not have been forced to choose our wedding date based on health insurance. (It is a big joke in the family though that we are the only people they know who can plan a wedding in less than 3 months for less than $2000! And it was a nice wedding too. Small, but very beautiful, and very, very special.) Perhaps I’ll tell that whole story at some point. My point right now is that NO ONE should have to do without health care because they don’t have health insurance. I wonder how many people get married so their spouse can have insurance? Or how many people stay in a job they hate so they or their family will have health insurance? The priorities of our government is just so skewed.
*Jumping off of my soapbox now*
I have a big request for any of you who have to go through these attacks alone: Please give me any tips you have on how you do it? I’ve done it in the past, but I used to have clues that an attack was coming, so I could get prepared. Wet cloth, empty buckets (or at least to the toilet)…. Now it happens very suddenly, no warning! Bam, I’m spinning. Today I had the hardest time just reaching in my night stand to get my medicine. So, any advice? How do you do this alone?
After feeling so sorry for myself, and having such a down week…today I felt…as close to normal as I remember!
My hearing is still off. (Down, Distorted) However, no headaches, no spins…I’ve had a great day!!
Went to Weaver Street, my favorite grocery store (Co-Op) that’s about a 30 min. drive from my house. Stuart and I had a fun afternoon, I even cooked steaks on the grill for dinner. And scrubbed the bathroom shower door! No more water and soap scum stains. (I know the whole bathroom needs it, but one little bit at a time.)
One bad thing, every night I’ve been running a slight fever (actually it’s pretty high for me because my normal temp is way below normal. Around 97.4F, tonight it was 98.8F) And I’m achy all over. Took some Tylenol, it’s better, but not gone. Dr. Gray said that the fibrin glue they used for the patches can sometimes cause an inflammatory reaction, and cause this, but it should go away soon.
I heard from my Psych. He was very upset that he upset me in our last session. He said he would be happy to be my provider as long as I wanted and felt he was helping. Plus, we are going to try another drug, Effexor, hopefully, I won’t have the side-effects. It’s also supposed to help with vertigo! Woo Hoo! If I can tolerate it. Some drugs I have all the side effects, especially the obscure ones, and other drugs I have no side effects at all. Hope this falls in the later.
I was in a whimsical mood today, so I drew Lucky Lucy. Nothing like what I’ve been doing lately, but she was fun!
Here’s hoping all of you have as normal a day as possible.
Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?
I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )
Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)
About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….
I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.
Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.
I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.
The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.
I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.
What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?
I thought, and thought, and thought….and I came up with…First –
What makes someone a patient? So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the best. The original meaning of the word patient is “one who suffers”. The meaning today” is any recipient of healthcare services.”
With this in mind: Yes, I am a Patient. According to both definitions.
Second part: When, and in what contexts, do you think of yourself as a patient, and when do you not?
For that I decided….well, it depends. I know this is a very insightful answer, so I will elaborate. Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often. : )
A lot of the time I do consider myself a patient. My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient. I had a lot of trouble with my husband being my caregiver for a while. I felt like I was no longer his wife, I was his patient. What could I do for him? He has been everything to me. He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene. Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up. He’s put in many suppositories, and every time I feel horrible about it, and I cry. I often feel like we’ve changed, I’m now his patient. But I’m more than that..
Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.” He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first. He’s simply thankful he can be here for me, just as I would be for him. We enjoy the wife/husband/friend relationship as much as we can. He NEVER lets me forget that I’m more to him than someone he has to take care of.
Yes, I am a patient. But I’m so much more than that!
A Wife. A Friend. An Advocate. A mom to my Furry Babies, Sandy and Max.
And I’m an artist!
Free
Sometimes I want to shout loud enough for all the world to hear:
I AM MORE THAN MY ILLNESS!
But Sharon asked more than that. She asked how I refer to myself. That depends on who I’m talking to.
If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife. If they ask what I do, Stuart usually says, “She’s an artist.” He’s proud of me. But if he doesn’t, I usually do say I’m an artist. If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health. (If you’d like to see some of my work, see my other blog: Create to Heal.)
If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends. People just didn’t seem to get it. I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”. The treatment I’m undergoing has given me different results. It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.
So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away. I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s. I know I’ve explained it before, but people seem to think it will go away.
I may not deserve this, but who does? No one I’ve ever met. I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would. Well, you don’t need to hear the whole note. The point is, I felt I had to point out that I am a patient. I didn’t use those words, though sometimes I do. I’m a Meniere’s patient.
Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired. Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?” That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.
It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy. So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me….. Often, hubby has to translate.
When I’m talking to or about some of my Chronic Illness friends, that how I refer to both. I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same. We get it.
I’m not sure I really answered Sharon’s questions, but it made me think.
My conclusion?
In my heart, I’m a wife first, because my husband is so very dear to me. I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.
I’m sure some would give me even more titles, but these will do for now.
Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!
Stuart’s interview went well. He is very interested in this job, says it’s like a previous job he had that was his favorite! He has to meet a couple more people, but it sounds very promising.
I can hear in my left ear! Not clearly…a bit distorted and still low, but I can hear what Stuart says without looking at him (if he’s close). It’s a little hypersensitive, but it’s a great sign!
Less sore every day, but still sore.
Just had to share!
Think we’re going to watch a movie now…with captions…but also with sound…let’s see what I can hear?
Picnic with Ants 