Today, we washed my hair! Wow, a bit of an ordeal, but it was worth it! I’m glad I have dry hair, but even my hair was beginning to get a bit gross after 17 days of not being washed! (I can hear the collective…”Ewwww” from all of you right now!) I did use a bit of the dry shampoo, but it didn’t work that great, it’s hard to use on long hair.
I wish I would have had one of these…in my size.
Now this would have kept the water away from my ear!! image from lulusoso.com
Recovery from the Endolymphatic surgery is still progressing, things are starting to itch! So it must be healing, right? and the little bit of hair they shaved is all prickly, it feels funny…and itches too.
I see my doc on Tuesday, so I’ll have a better update then.
Strangest thing, recently…past few days, I’ve been able to hear more. I had a headache and decided to sleep early the other day, I kept hearing this sound..thought it was tinnitus, but it was so strange, so I put in my hearing aid to see, and found out I was hearing the TV, very low, but still I could hear it! So I took my hearing aid out and got hubby to talked to me, I heard it! Yes, very muffled, but I heard it with my left ear, the one they just operated on, the one with 0% word recognition the end of November. Again, today, I took my hearing aid out of my right ear and could hear people talking, could understand…they were very close to me and have a good frequency for me…but I heard it! I’m flabbergasted. I know it could just be fluctuating again, but it’s strange.
The surgery on this ear has been so different from the surgery on the right ear. With the Rt. ear…no vertigo, a lot of pain, ear would drain a fluid (not bloody) but a lot of fluid, hearing dropped and never came back but stabilized so hearing aid helps a lot. Left ear… much vertigo, not a lot of pain, ear is draining blood (not large amounts most of the time, but blood not that clear fluid), and hearing seems to be improving.
I’ve realized that when we go in for surgery and ask the doctor what to expect, he can’t know for sure. Every person is different, and every surgery is different. I had the same surgery by the same surgeon on both ears, and the recovery was as different as could be!
I do hope they both have a high results rate! I really want to stop spinning multiple times a week…ummm day!
a great milestone today. (must make note, have to remember how important each little accomplishment is.)
Do you ever feel like you have accepted everything, are doing well, being productive….ect. Then have a dream of what you were like in your old life? That happened to me last night. I’ve been a bit melancholy all day. Next Post…I’ll tell you about it. Warning, it will be another T.M.I. post. Sex will be included.)
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
Drawing by Ayla Probst (10 years old) A surprise gift in the mail for me today.
Today was a good day!
I’m sitting here after a glorious day. A day most people take for granted.
This week we celebrate Thanksgiving in the US. It is a time to reflect and be thankful.
Today I am thankful for good days!
Most people wake up in the morning, and simply start their day, without a thought about it. The first thing I do when I wake up is take stock of how I feel, and decide if I can make it to the bathroom alone or if I need to call for help. Today I awoke to find myself feeling…good…I mean really good. This is so unusual lately I was surprised, and very grateful because Stuart wasn’t home. I got up, did my morning routine, with aw. As I walked down the stairs I realized I hadn’t been downstairs since last Thursday, and that wasn’t for long.
I had a little to eat and decided to sit out on the back porch and enjoy the sun. Today was a beautiful day!
Stuart was home soon and surprised to find me outside, and feeling so good. Not just OK, but good. I wanted to get out of the house, but wanted to make sure I didn’t over do it again. We decided to take a drive, but right before we left I started to feel a little off. Head a bit swimmy, so I decided to take some medication, just in case. So we jumped in the Bug and put the top down. We drove to a town near by, stopped at a drive in fast food restaurant, and had a treat. We came home and I decided I still had some energy to spare, so we cut back the dead flowers, and I cut the herbs I could save after the last frost and hung them to dry.
Stuart went to the mailbox and I was so tickled to find a card from one of my favorite people. A friend of mine’s daughter, Ayla, she’s 10 years old. They live in Tucson so I rarely get to see them, but for every occasion she sends me a card, normally with a drawing included. She knows how much I treasure her drawings. You can see her drawing at the top of the post. Yes, that is a penguin in the hot air balloon. Ayla, loves penguins. Isn’t she the best?
Yes, you are right, it was last Monday that I felt so good. So what is it about Mondays? It’s not like my weekends are any different from every other day. I said to Stuart, “So, am I just going to feel good on Mondays?” He said, “No, you’ll feel good tomorrow, you have an appointment with Dr. Kaylie, and you’ll feel good on the 5th, you have an appointment with Dr. Gray.” I just sighed, knowing he was probably right.
Isn’t that often the way? We can feel like crap for the longest time, then the day we go see the doctor, we feel better.
I hate to even say this, but I kind of wish I would feel bad tomorrow, so my doctor could see what I’m going through. *cringe* I know I really shouldn’t say that out loud…or even write it.
Here’s to never taking a good day for granted, and enjoying the small things.
I decided that was enough. I’m not going to push it.
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?
**this post was started on Wednesday evening, finished Thursday morning**
Yes, I had a great day earlier this week…Monday I think it was, things are all a blur now, I had a beautiful day.
After my beautiful day, I hurt so terribly that night. Every muscle, and joint ached. I took a very hot bath with Epsom Salts, like my massage therapist tells me too. It helped, but then I got all woosey and dizzy when I got out of the tub. Change in temperatures was too much for my head. (I tried to do it gradually, but it didn’t work out.) Luckily the dizziness subsided, but I had a very hard time sleeping because of the pain.
The next day was an in the bed day. Just one big ache, and the tinnitus was yelling! So I just relaxed, was on the computer for a while, read for a while, and drew for a while…made a lovely butterfly, I’ll share it soon.
Today, I awoke feeling better. I got up, went downstairs and started to make my own breakfast. Then I started to feel a bit unsteady and turned it over to Stuart, didn’t think I should be using the stove.
Twice today I had an attack! However, they didn’t escalate to the OMG I’m going to die while retching my guts out, type of attack. They both came on fast, and we worked fast getting the meds in me. Stuart got everything prepared, but it calmed down. On both occasions, my head started to spin, I got very hot, and my stomach started to do flip-flops. I do remember saying earlier in the day that I felt like I had a nervous stomach, Stuart asked what that meant. I explained, “I feel like I used to when I was about to take a big test, or a date was late picking me up…that kind of thing.” He smiled at the date thing, but hey, I’ve being stood up is a horrible feeling. However, that passed, I felt alright. Then a bit later, I was oh so sick. I wonder if the “nervous” stomach was a clue? I’ll try to pay more attention to the next time that happens.
**added to post Thursday morning** I didn’t have to wait long. I tried to get to sleep a little early last night, finally around midnight I drifted off, and about 6:30am I was dreaming I was spinning, and woke up to the world in a full spin. This attack was already in full-blown nastiness before I could move my head to get meds in me. It didn’t last long, thank goodness. And I will spare you all the details this time. One thing that continues to linger with me about it, is my headache. I slept a few hours, but my head hurts so much. I finally felt I could keep something down long to eat a little, just so I could take a pain pill. Right now, my head still hurts, and my stomach hurts….what a great way to start the day.
I don’t understand it. 3 attacks in less than 24 hours? It’s such a turn around from just a few months ago. Do I continue to try to get back to that with Dr. Gray? Or do I push for a different treatment? But if I get a different treatment, how does that affect my low cerebrospinal fluid pressure? So many questions, and some how, I don’t think I’m going to get many straight answers. I see Dr. Kaylie next week, and Dr. Gray on Dec. 5th, we’ll see what happens. I think I’m going to get a lot of , “it’s up to you”, but I really need some advice. I hope they won’t let me down, and I really hope they will work together on this. What will I do if one suggest one treatment and the other suggest something else? *OK, my mind is officially off-line right now*
I planned to do a post on how to better prepare ourselves for the holidays. You know, trying to reduce the stress of the season. I came up with a fool-proof plan for me. I’m just not going to do it this year. Yes, Stuart and I may do a little bit here at home just for us, but for the most part, I’m just saying “No”.
I can’t go to parties right now. The noise makes enjoying myself impossible, and I feel very isolated. Since Stuart just lost his job, we can’t give presents like we normally do. We really need to be on a tight budget, who knows how long this will last. Hopefully, not long, but we need to be prepared. Plus, I simply don’t have the energy to do it this year. I’m also terrified of having an attack at someone’s party. Can you imagine?
I do think I will send out cards. I want to send some people personalized letters that explain why I’m AWOL this holiday season. Explain more about my illness, and stuff like that. I think a personal letter will help people understand just how personal this is, and how it personally affects our relationship. (another tip from Toni Bernhard, from her blog in Psychology Today, “Turning Straw Into Gold”.)
I still really need to work on learning how to know when I’m doing too much. I don’t like having the fall out after a good day. My friend Rita, over at Soul’s Comfort Corner , gave her secret, “The only thing that helps me is using a timer. Otherwise when I am having a good day I inevitably overdo it. If I limit my sessions to 45-60 minutes and spread them out over the day I can “usually” do something almost every day even if I am only good for one session on a bad day…..” What a great idea! I’ll be trying this one, as soon as I feel I can move.
I hope everyone has a wonderful holiday season. I’ve read a few articles that talk about how to make it easier on people with chronic illnesses. The biggest one is to know how to limit yourself. You don’t have to be super person, do what you can, and don’t beat yourself up when you can’t do something. There are lot’s of hints, but I felt that was the biggest thing. Take your time, and enjoy yourself, don’t push yourself too hard. Wouldn’t you rather do less and really enjoy it, or do too much and be in agony?
We all know I have a very hard time with knowing how to pace myself, so I’m just bowing out this year. We don’t do a lot anyway, we don’t have family close, or a close family, so this won’t be that hard. I hope. I really hope I don’t get depressed because I feel left out. I want to feel joy that my friends can have a good time and enjoy themselves, even if I can’t be there too. (of course, without me there, will they really be able to have a good time??) hahahaha
Seriously, I’ve been reading Toni Bernhard’s book, How to Be Sick, and she talks about feeling joy in the joy of others. This is something I really want to work on. She mentions how easy it is for our emotions to turn to envy, and I know I feel that way towards some people, and some things. I want to stop that, and feel joy that others have the opportunity to do things I can’t. (Thinking, this will merit its own post.)
This post is for the Chronic Babe Blog Carnival all about Gratitude.
I’ve been thinking a lot about this lately. Everyone here knows the people I’m grateful for…my dear blogging friends, the friends who have stuck by me…and most of all my precious husband.
I could write an entire blog post on how grateful I am to my husband for all he does, but I think I gush about him enough.
One of the biggest things I’m grateful for is this blog! Picnic with Ants…gives me a place to get out my emotions, to know I’m not alone, to work out problems, to make other’s aware of what my Ant’s are…especially Meniere’s Disease. When I started this blog I was fighting my illnesses tooth and nail. Thanks to my friends on here, I’ve learned to accept them as a part of me. No they don’t define me, but they are a part of me, and I will learn to walk with them. That in no way means I’ve given up, it simply means I accept this time in my life.
This is a safe place for me. A place where I can be myself, and if people don’t like it they don’t have to read it, however, I’ve very grateful for those of you who do.
At times I realize I’m grateful to be in this place I am right now. In a way, yes, I’m grateful for this disease, we call Meniere’s…and my list of other conditions.
I have learned so much during my struggles with chronic illnesses. I’ve always been a compassionate person, but I think I’m more compassionate.
I notice things I didn’t really see before. I’m grateful to my doctors who are trying everything to give me some relief. To the staff at Duke for all the things they do that I don’t even see. I’m grateful for the orderly who was so kind to me while wheeling me to the recovery room, and stopped by later just to make sure I was alright. I’m grateful to the guy at my grocery store who knows I’m hearing impaired and will make sure he looks straight at me when he talks and enunciates his words so I can read his lips if I can’t hear what he’s saying. I’m grateful for the technology that is available today,my computer, my hearing aid…and possibly in the future a cochlear implant. All different technologies, but all help me communicate so much better than I could without them.
I’m also grateful
I can still appreciate the seasons
I can still read and escape in a book.
I can research doctors, illnesses, treatments…just think a few years ago we couldn’t do that as easily as we can now.
I have doctors who don’t mind questions I have, are thrilled that I’ve researched my condition, and who genuinely care.
I have health insurance…and that bothers me, it just shouldn’t matter…but it does.
that things continue to change. One day I may be very depressed and blue, but the next day I may see the sun and find the clouds that were so thick over my head are clearing.
For my dog and cat…especially my dog. She has been with me for 18 years, she’s now 19. A year and 4 months ago we were told she had a very aggressive form of bladder cancer, they couldn’t operate, and she would last at most another year, probably much less. She doesn’t show any signs of slowing down. I guess no one told her she was sick. : )
There is so much in my life I could whine and bitch about…and I do from time to time (more times than I want to admit), but there is so much I’m grateful for…much more than I could list here.
Thanks to Chronic Babe for making me think about all the things I’m grateful for.
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 