Today I can get up and go to the bathroom on my own!!! Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week. To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!
With Stuart’s help, we even brushed my hair today. I do believe a little family of mice were about to move in, they’d already made big nest! Thank you to whoever, invented the detangling spray.. Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears! It did wonders. The mice will not want to take up residence now!
The pain is minor to moderate, depending on the time. The headaches are still there, sometimes much worse than others. Pain medication or Maxalt seems to be helping with those. I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!
I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong. I know, I may have some set-backs. Especially since the feeling in my ear still isn’t completely back. Let’s hope that the severe vertigo stays away! (we even got my ear ring back in. I thought I wouldn’t see that ear ring back in. When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me. So we took advantage of my ear still being a bit numb and put it back in!)
To close…a drawing I colored last night/today.
Christmas Tree - by w. Holcombe
…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
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!
Still can’t move my head without the world spinning. I tried to ease myself up…first slowly into a sitting position, waiting a long time each time I raised a little more. I thought I was at the point of sitting up, but boy was I wrong.
Dr. Kaylie said this kind of thing is possible, and to take more Valium. From the people I’ve talked to who have had this surgery, I think it’s a bit more than possible, I’m thinking it’s pretty common. The Valium helps a little, I can move my head a little bit, and don’t feel like I’m going to barf all the time…thank you to whoever invented Phenergan! I’m glad to hear this will end, if I thought I had to live like this all the time, I think they would have to lock me away because I would go crazy.
Stuart and I have are handling things pretty well. I’m less horrified by him having to help me with all my personal needs. (I must say, I never realized I peed as much as I do, I knew I drank a lot, but wow! You really notice it when you have to ask for help with it, you become acutely aware.) My husband has such a wonderful attitude, and is so generous and compassionate. It’s funny how we never seem to see the virtues other’s see in us. Stuart does not see that he is a very good person!
My ear is draining now. The swelling is less, I’m wondering if that’s why it wasn’t draining? Too swollen? The drainage is very bloody. And I have to change the cotton in my ear about every hour.
My biggest challenge now is sleeping. I have a very hard time falling asleep because when I close my eyes the world spins even more. Finally, when I’m so exhausted I will drift off. Waking is even harder on me. Every time I wake up I feel worse. The vertigo is worse, the pain is worse….
I sure hope this starts to level off soon. At least to the point where I can get to the bathroom.
Wouldn’t it be a great Christmas present to have this surgery work, and have my vertigo greatly reduced? (I hope I’ve recovered to a manageable state by then!)
I do so wish Stuart had some help. He keeps getting mad at himself because he can’t get more done. Taking care of me, looking for a job, cleaning the house, doing laundry, taking care of all meals, taking care of the pets…but he feels he’s not doing enough.
Yes, we need to get some things on eBay, the sooner the better, for Christmas. (he has some very expensive Lego sets that could make someone very happy, and us a little more solvent.) We also need to put the Honda up for sale. That would help our finances a lot. These things are important, but he can’t do it all. Yes, he’s a super man, but he’s not Superman. But you know, I can’t see Superman actually cooking and cleaning, or being a nurse maid.
I have been running a low grade fever, usually at night, but it’s not high enough to worry about. I’m pretty sick of TV, and I can only look at the computer for so long. Reading is alright, but again, I can’t do it for long. Words just start running together.
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.)
Sharon at Bed, Body, and Beyond is hosting the PFAM (Patients for a Moment) blog carnival this go round, and she asked, why do we write? The carnival will be posted on December 7th, be sure to go by there and find out why other’s write, and what they write about.
Drawing Hands by M.C. Escher
I’m an artist, not a professional writer, I never really considered writing anything that was meant for others to read. I kept a journal, off and on, for years. Now and then, I still find little books with partially filled pages buried deep in a box, little segments of my life, meant for no one’s eyes but mine.
The first thing I wrote that was intended for other’s to hear (or read) was a poem I wrote the day my mother died. This became the largest part of her eulogy. A poem I still cherish to this day, it’s not professional, it’s not prize worthy, but it comes from my heart, and it helped me get through the first few hours of saying goodbye to my mom.
Memories of Mom and Me
I look around me and all I see,
brings back memories of mom and me.
The clouds in the sky; for hours we’d look,
picking out colors and shapes and books.
Oh, look there’s a snap bug – remember him?
a play thing for me and mom again
.A sea shell reminds me of a walk on the beach;
my diploma, a goal, she believed I could reach.
Let’s go to a movie – her favorite E. T.
then go to the park and swing with me.
An ice cream cone, a frog, a snake,
a Thanksgiving dinner we attempted to make.
All the things around me I see,
bring back memories of mom and me.
The people who loved her, I see in their eyes,
the love that she gave them was no surprise.
She had a heart as big as the world
and the soul of a little girl.
People who knew her will never forget,
because she affected everyone she met.
Reminders of my mom are easy to see,
for there are parts of her inside of me.
After that day, I filled many more journals with not just accounts of the day, but prose. Still, only for my eyes, or to be shared by a very select few.
For years I’ve had health problems..too many to mention. I wrote about this – privately. Then a few years ago I found out I couldn’t eat gluten. It appeared that this little ingredient in so many foods was one of the things making me sick. I started learning a whole new way to eat, to cook, to shop, to talk to wait staff…ect. I started a little blog to help me keep up with recipes, places I’d eaten, products I tried, all of my experiences being gluten-free. At first it was private, I only wrote for my information. Then I noticed other gluten-free blogs and thought others could benefit from the things I was learning…and that started me on a road to writing publicly.
My gluten-free blog was pretty popular, but I started having other health issues, and even found out I had another food intolerance. Not only did I feel that the gluten-free blog no longer fulfilled what I needed, I didn’t think I could put as much time and effort into it. So that blog had to change.
I started having more issues with Meniere’s Disease. However, it wasn’t ruling my life…yet. So I decided I wanted to start a blog about getting healthier. Yes, I was going to take a year to focus on my health and fix things. My body had other ideas, so 365 Days to a Healthier Me, changed to Picnic with Ants.
With this blog, I have thrived. I started writing this blog to tell my story, living with chronic illnesses. To get it all out before I exploded. Then I found others who understood what I was going through. I found support, and friendship, things I never expected to find, simply by writing about my life with all its struggles, dreams, hopes, milestones….
I found myself opening up and telling the nitty-gritty honest description of my emotions, and my diseases. What my Meniere’s attacks are really like, how it feels to find that your husband is now your caregiver, how losing your hearing changes your life, how having chronic pelvic and hip pain affects your sex life, what it means to be bi-polar and (mostly) stable….I write about my life, and how I strive to live it to the fullest, with chronic illnesses.
I tell everything, in detail, not just to get it out, and find support or give support, I use it to explain to those who have no idea what we go through. I have become an advocate for myself and for others with chronic issues. I’m even considering writing a book detailing different people’s experiences living with an invisible illness.
There are many things I can no longer do because of my illnesses, one of the things I can do is write. Therefore, to put it very simply,
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.
Picnic with Ants 