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!
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.
After posting about my attack on Wednesday, I had an outpouring of people who either commented on the post or emailed me personally to tell me I’m not alone. As comforting as it is to know someone else understands, it’s heartbreaking that there are others who have to go through this too.
I really wish that no one could empathize with me.
One thing about my attacks recently, they don’t last as long as they used to….but it feels like they do. I’ve had attacks last over 12 hours, the last one lasted over 3, the one before that was less than an hour, yet each felt as if they lasted for an eternity.
Angelea from A Day in the Life with Meniere’s said, “The only thing that keeps me hanging on through an attack is that, at least so far, they eventually end within 8-12 hours.” I’m the opposite, every time I have an attack, I’m terrified it won’t end. I know it always has…but what if this time it doesn’t….it’s unimaginable, yet…it fills me with terror. I’ve read of people having vertigo for extended periods of time. Weeks, months, years… indefinitely. Do they always feel like I do during an attack? How do they live? Or are they using the word vertigo loosely? I know it varies in intensity, but all I can think of is the terrifying sensations I get.
Most people who write about their attacks, don’t go into the detail I have. We all know they are horrible, but somehow I wished for my friends that it wasn’t as bad for them. I was even a bit surprised when I heard how much so many of you could relate to everything that was happening to me. (I really wish you couldn’t). We hear each other say, I had a bad attack complete with throwing up for hours….but we normally don’t talk about the rest. Thank you all for sharing your stories with me. People (especially our doctors) really need to understand the torture we go through. I keep wondering if these specialist we see have ever seen an attack. Do they just know what they’ve read, or have they ever experienced anything like it? Or seen a loved one go through it? (I plan to ask my doctor the next time I see him.)
I emailed my doctors. I heard from Dr. Gray already, and unfortunately she is also thinks that although I’ve had some good results with the patching, the results to not stay sustained, and this does not look to be a long-term solution. That was hard to hear, even though I already knew it in my heart. We’re waiting to see what Dr. Kaylie thinks my next move should be. I had good success from the endolymphatic sac surgery on my right ear. I’m almost positive that the majority, if not all, of my attacks since I had the surgery have been from my left ear. So that is a consideration. It’s a rough surgery, and recovery is hard. From what I’ve heard from two other friends their recovery was much worse than mine. So I do know there is a chance that it could be worse next time. However, I haven’t talked to Dr. Kaylie yet, we’ll discuss my options and see what happens.
I’m so confused by all of this though. I’m not sure if we’ll discontinue trying to keep my cerebrospinal fluid regulated. I would think that we’d need to do this. So many questions.
Again, I’m going into this bad time just as the holidays approach. Last year, I had to wait from early November to late January before I had my second set of patches. That was some of my darkest time.
I say so often, that I accept this illness, it is a part of me. But I think a lot of that is what I want to believe. Today, I broke down and just screamed…”I DON’T WANT THIS TO BE HAPPENING TO ME ANY MORE!” I thought it was better. If I could have seen this future in January, I would have spent those months symptom free so differently. I tried to get my life back, to start a future. I spent 30 class hours plus many, many hours outside of class, working to become a foster parent. I started a garden. I bought a car. I bought hearing aids. My life was all falling into place….then it came crashing down.
Now I look back. If I had known all that I was doing was wasting time. We won’t be able to foster. The garden died. I now have a car I may never be able to drive, and I have a hearing aid that sits in a box because my hearing has deteriorated so much in that ear it’s useless. ($2000 for 3 months of use, I don’t think that’s a very good bargain.)
So if I could have peeked into the future, I would have told myself to live every symptom free day to the fullest. Travel. Spend as much time with friends as possible. Go, and do the things you can! Don’t waste a day! And most of all, don’t plan for the future!
So yeah, I guess today I’m having a pity party.
I keep thinking in January, before the patches, I was contemplating suicide. I can’t go back to that. I just can’t. But if I get to the point where I’m having the horrific attacks multiple times a week…often every day…I can’t say that I won’t fall back into that deep dark hole.
No this disease is not me, I do accept that it is part of me….but when it takes over my life and becomes all of me, that, I can’t accept.
I know, I’m jumping the gun a bit, and have some major issues with regrets right now. I haven’t given up, and I’ll keep fighting for me. I’m not fighting the illness (as in not accepting it), but I am fighting for my life. For some balance. For some relief.
Hope you don’t mind, but so I don’t have to tell the story over and over….you know how it gets.
Here’s a copy of the mass email I sent out to friends and family last night:
I had a lumbar puncture today. (as you know I haven’t been doing well for the last few months.)
The doctor expect to find that I had high Cerebrospinal Fluid (CSF) pressure. She said I had “high symptoms”, so we go in expecting my CSF to be high. Surprise, it was low. Lower than it has ever been. (this was my 6th LP). She decided, since I had so many symptoms of high pressure, she was going to take some CSF out to see if I felt better. The more she removed, the worse I felt. my head started to hurt so bad I couldn’t stand the light in the room and I was getting nauseous. So she put back in all the fluid she removed, and started adding more. 5cc’s at a time. She ended up adding 15cc’s extra. (they said that’s a lot)
My pressure went from 15 to 21.5. Now they have a number that I feel my best at. if they check me again, they know something is amiss if I’m under or over 21.5.
So right now, I have been taken off all meds that might lower my pressure. I have to drink a lot. (I think I already do, but she said more!) Trying to keep my pressure up without having to do more patches.
I’m hoping that we can at least keep it up long enough that I can attend Stuart’s dad’s wedding. If it drops after that, I’ll be seeing Dr. Gray again. She compared the two myelograms (CT scans done with contrast that shows leaks) that I’ve had. One from November 24th, 2010, the other from August 22nd, 2011. She said there were no real new leaks, the leaks came from the same places. I was just breaking through the patch matterial a little on some, or perhaps the patch didn’t cover all of the leak. Also, from what I understand they didn’t patch them all for fear of making my pressure spike too high. She said she saw 2 spots she knows she would want to patch if my pressure drops again.
Unfortunately, she said I’d probably notice the results in a week or so, then I could just come in and get patched…but it often takes a month to get in to see her. That would put a bit of a kink in a trip to Tucson.
So I will drink many fluids, and stop avoiding caffeine so much. (caffeine can raise your pressure)
Thanks for all the healing thoughts today, I felt them all. Really, I did! I think it’s amazing that so many people were thinking of me at the exact same time! How Awesome!
One last thing Other than my back hurting a little, I feel great!
That’s how the email ended…then later that night…
The tinnitus started getting loud again, and my hearing kept cutting in and out. (well, the hearing in my right ear, how would I notice in my left ear…unless of course if it came back.) It was so strange, I’d be listening to Stuart and all of a sudden I couldn’t hear him, then I could, then I couldn’t…We put a new battery in my hearing aid, and Stuart even listened through it for a while to see if it would cut on and off…nope, it was me.
Now today, I still have a buzzing tinnitus that’s a bit louder than I’d like, but I can hear again…not off and on.
Now, let’s move back to my first arrival at the hospital…
When we arrived to check in we were told I had an appointment on the 17th, but not the 11th. Stuart explained, that he spoke with Dr. Gray and she had a cancellation on that day, and said she could see me sooner. The person at the check-in desk got on the phone, and we stood there and waited. I started to cry, but think I hid it well. She asked us to wait in the waiting room while she tried to find something out.
I broke down. I told Stuart that if I didn’t see Dr. Gray that day, I wasn’t coming back. I’d call Dr. Kaylie and tell him, I was finished with all of this, and we’d have to find something else. I wasn’t going to continue to wait months and months to see this doctor for a glimmer of hope. (yes, I know, probably a bit extreme, but if you’ve been reading this blog, you know I have been scared and my emotions have been raw and on edge.)
Finally, they said I did have an appointment, but Dr. Gray was running late. Very late. My appointment was at 3pm, and they didn’t get started until after 5pm. (I think they messed up the scheduling and I didn’t have an appointment, but Dr. Gray decided to see me as the last patient.) But at least I got in there, and I know something now!
I’ll share with you the first doodle I did in the waiting room:
Little Miss Sad Mad
As you can tell this little lady (my inner self) was very mad! Gnashing her teeth, sparks flying from her head…I wouldn’t want to be in her way!! On the other hand, look at the eyes, they are very sad…poor thing so conflicted.
My next doodle was much more…well, just a doodle, but Dr. Gray saw it and just went on and on about how I was hiding being an artist…and how much she loved it…so I gave it to her. She hugged and kissed me. (maybe if I need another appointment, I will use a drawing as a bribe to get in sooner!) hehehe
I’ll keep you posted as my symptoms change. (headache is barely there today!!!! and I’m not dizzy! Woo Hoo!)
I’m sorry I haven’t been keeping up with my reading and commenting on other’s blogs. I will try to catch up soon, I promise! Hope it’s all good news.
Thank you all again, for the caring comments, thoughts, notes…ect. It means more than I could ever express.
Saw Dr. Kaylie on Tuesday. I have an ear infection. Again. Who knows why. He thinks the tube is beginning to irritate my ear because it’s trying to come out…and blah, blah, blah…I didn’t really listen to that part. Partially because I couldn’t hear him, and partially because he started the sentence with, “I don’t know” When a doctor says I don’t know…well, I have a hard enough time trying to hear the things they really do know about. I let Stuart listen to the rest. : ) However, he doesn’t think this infection has anything to do with my on going symptoms.
I started feeling like I was going to have a full blown, down on the floor, throwing up Meniere’s attack as we got to the clinic. I’d already taken some meds before we left the house because I was feeling it a little bit. So I took some more. I did not want to fall out at Duke’s Clinics. It’s hard enough in the privacy of your own home, but I just can’t imagine the horror if I fell down in the hall there writhing on the floor throwing up. Ugh…just the thought. I know, I was in a medical facility, and they would try to help as much as possible, but let’s face it, I would have been mortified. So, I took more meds, and Stuart wheeled me in to see Dr. Kaylie. When he saw me he looked so sad. He’s such a sweet, compassionate, and unbelievably smart doctor, I just wanted to be able to get up and say, “don’t worry I’m fine, you fixed me all up.” Of course, I couldn’t. But I do believe that he and Dr. Gray will do everything they can to make it better.
He was very sympathetic, but I really need to see Dr. Gray. He is treating my ear infection, but he can’t really do anything about the pressure problems. I have to get it tested again!
Dr. Gray also called on Tuesday. Her scheduler called the next day and I have an appointment on October 17th, unless she has a cancellation and they can get me in there sooner. We really can’t move forward until we know if my pressure is high, like they suspect.
My symptoms aren’t classic for having high pressure, but I do have some. However, I also have some of the symptoms for having low pressure. It’s almost as if my pressure keeps randomly going up and down…but that can’t be happening all by it’s self…can it? Guess I’ll find out.
In the mean time, I’m most comfortable in bed, in a reclining position. I’ll try to go down stairs to just move around and get a different bit of scenery, but I don’t last long. When the tinnitus gets too loud, I can’t stand any other noise. I’m not as comfortable on the couch, and I’m not really walking all that great on my own. I can usually get from the bed to the bathroom, but that’s only about 4 feet, then I can hold on to the walls/sink… (plus I do have a walker right beside my bed to help if I need it.) If I’m downstairs I have to use my walker or Stuart to get to the bathroom. (Not all the time, but most of the time.)
It is driving me crazy that I can’t cook. I love to cook, and with my food intolerances, it’s hard to cook for me, and even harder to get take-out. So we’ve been eating a lot of the same things. Easy things that my husband can cook. I’m very grateful, but I miss my kitchen!
Oh, Stuart has discovered the slow cooker. He made a delicious roast this week. I was so proud of him. he even put in a bunch of potatoes and shallots that came from our garden! (we didn’t get much from the garden, but the things that grow underground did great.) Growing organic vegetables is hard! We learned a lot of what not to do…hopefully, we’ll do better next year. Unfortunately, we’ll be missing the fall planting season since I’m stuck. Being home bound sucks!
I am keeping up my spirits by drawing, and reading.
I don’t think I’ve mentioned it, but Stuart’s father is getting married! November 5th is the big day. I’m going to have a mother-in-law…wow! (Stuart’s mother died 3 months before we were married.) I really, really, really want to go. They live in Tucson, AZ. That’s a pretty long flight from RDU (Raleigh/Durham International Airport), and there’s always a lay over somewhere. I’m very, very lucky that I have a couple of friends who have graciously offered to stay with me if I can’t go, so Stuart will still be able to go and be his father’s best man. As much as I want to spend time with these friends, I really hope I can go. Not only do I want to meet my new family members (she has 3 children and 4 grand children!). I want to see my dear friends who live there, and my niece. (who will have a baby brother in January).
So everyone send good healing karma, and cross your fingers I can get in for an appointment with Dr. Gray earlier than expected! I really need her to fix me up quick, so I can make it to the wedding! (plus, Stuart and I really need a vacation!)
I thought everyone would appreciate that the only damage we received from Irene, was that our wild flowers are now on the ground. I must say, these flowers have grown completely out of control. I just planted a bunch of mixed wild flower seeds in this area, they were supposed to range in height from 6″ – 24″. We have some that have passed 3 feet high, and are close to 4 feet. I guess I should say, they were…now they are leaning quite a bit, and covering our walk way. I’m so relieved that we have been spared both the tornado, and the hurricane that has come through out area in the past few months. (Did feel the earthquake, but we used to life in California, we just thought it was weird here.)
Now…on to the story of A Pretty Good Day:
Today I woke up and was excited because Stuart mentioned if I felt alright we would go to the grocery store.
Yes…that sounds sad, but getting out of the house…heck, getting out of bed isn’t something I’ve done in a while. As of last night, I’d been out of bed about 4-5 hours total since Aug. 22nd. 8 Days. Wow. (and those hours were spent on the couch.)
Well, I decided to take on much more than the grocery store, I wanted to go to Michael’s – the Arts and Crafts store. I had the desire for new art supplies, and a new sketch pad. Since I’ve been doing so much more art, I needed some new stuff. I got 2 sketch pads, one has 90 lb. stock paper (this means it’s very thick and you can use watercolor on it.) The other is just a sketch pad, about 50 -60 lb. Not sure exactly, I found it in the Bargain Bin at Barnes and Noble. So yes, I went to Michael’s, Barnes and Noble, Target, and Earth Fare. We even ate at Earth Fare’s hot bar (Earth Fare is like a local…well, NC based…Whole Foods.)
I got new pencils that are so cool. They are called Inktense by Derwent. They are like watercolor pencils, but they are ink based. Hard to describe, but you can draw with them just like colored pencils, then if you add water, the color gets vibrant, and very…well…I have to say it Intense. I’ll be posting a drawing I did with them on my other blog Create to Heal. If you are interested.
I feel like I easily walked a couple of miles today. I over did it. When we were walking around Target I know people thought I was drunk. I kept losing my balance, and my words were not coming out right. Stuart kept asking if I was alright, and I said I was….and I felt that since I understood I wasn’t quite right, then I was alright enough. I explained this to him, and he seemed to take it in stride. (remember, when he had his “episode” he thought he was fine, and he was…oh, so NOT.)
So great news today. Minor nagging headache, haven’t needed to take any Diamox (the drug that lowers your pressure, and has icky side effects). Off balance/disequilibrium a lot, but no spinning. My hip/back/and knees all hurt….oh and so do my feet. I’m sure the hip is going to yell at me tonight when I’m trying to sleep. I’m going to get in a hot bath very soon.
Yesterday I published a series of photographs that I manipulated to show the intensity of my headaches. I think some of you might like this: Translating My Headaches Into Images.
I’m sorry to see the summer coming to an end. At the beginning of this summer, I had such hope, so many plans….and no frigging idea I’d have to have 2 CSF procedures!! Well, look out Fall, because I’ve got a lot of making up to do!
I’m finding the drawing journal to be very therapeutic.
Day before yesterday was a very, very bad day. I was awakened by one of the worst headaches I’ve ever had. The lower part of the right side of my skull, and down my neck was…well, I can’t think of a good adjective…let’s just say, I was in a huge amount of pain.
Throughout the day I kept trying different meds to see if anything would work. They sometimes made it better, often not. I was nauseous, and just miserable. That afternoon, I turned to look at Stuart and the world moved. I felt all the symptoms of an attack starting. The world was off-balance, but not completely spinning yet, I got HOT, I didn’t feel like my head and my body were listening to each other….I told Stuart…”It’s coming!” He ran and got my medication, some cool wash clothes, and trash cans….he was getting prepared. I’m happy to say the whole world spinning part didn’t happen, I didn’t throw up…but I was amazed when it started to calm down and didn’t become a full-fledged vertigo attack. (I have a question, anyone else out there who has these attacks, when it first starts to you really have to go to the bathroom…bad? Every time it starts, I have to go! I don’t want to get up and move to go to the bathroom, I just want to stay as still as possible…but I can’t I have to go!)
For the rest of the day, the tinnitus was very loud, my head hurt, and I was exhausted. I had to use my walker. (very strange thing I’ve noticed, a lot of time when the tinnitus is at it’s worst, I can hear better….isn’t that the strangest thing you’ve ever heard?)
I’ve decided that I have an Evil Goblin living in my Head! And he looks something like this:
Doesn't he look Evil?
These are his torture devices:
Look Familiar?
Here’s another sketch of my Evil Goblin (the original looks better. I didn’t realize photographing graphite was so hard.)
face of the Evil Goblin in my head.
I hope you have enjoyed a view in my head.
Wanted to let everyone know that my appointment with Dr. Gray has been moved up to the 22nd. I’m still on the cancellation list and if anything comes up before then…keep your fingers crossed.
I keep thinking of posting, I have composed many wonderful posts in my head as I lie in bed waiting for sleep will come….but of course, I can’t remember any of it once I wake up.
I don’t know what’s wrong with the spacing on this post. I’m sorry it doesn’t have breaks for a lot of it. I put them in, but they didn’t show up.
**Fair warning** This post is a lot of stream of consciousness talking. Things that are on my mind. You are welcome to read part of it, or non of it, or all of it….what ever strikes your fancy. Just beware…I may ramble a bit.
My symptoms lately have been very strange. Perplexing, is a good word.
photo courtesy of scienceblogs.com (Migraines)
I’m very lucky, I am NOT having vertigo! But here’s what’s going on:
daily migraines – on a scale from 3 – 9 (one day was a 10 for about 10 – 15 mins, Stuart was ready to take me to the ER…but it subsided)
tinnitus going crazy – at times my tinnitus is so loud I swear a jet engine is taking off in my skull. Usually, it last a couple of hours, slowly returning to my normal hum. But days like yesterday….well, the EXTREMELY LOUD ROARING lasted for about 8 hours! For a few days every night it would start around 10:30 pm and last until about 3 or 4am…then I could finally sleep.
my hearing was better during the loud tinnitus – yeah, WTF? I put in my hearing aids and I could hear all the dings that sound when you first put them on – in BOTH ears. This only lasted a few hours. This is the second time this has happened. I’m glad because it shows me my hearing can improve in that ear, but it’s a bit much when it happens in conjunction with the roaring. It’s also very confusing.
fatigue – are you surprised by this one?
disequilibrium – No I’m not having vertigo, but I get so off-balance some times. I’m also getting that “woosh” feeling when I move my head too fast.
I keep feeling like I’m on the verge of an attack, but it doesn’t come.
Dr. Gray sent me an email that said she wanted to “test my pressure now!” But her scheduling secretary said the soonest I can get in is August 30th. He emailed me this, I emailed back and asked to be put on the cancellation list, telling him I only live a few minutes from Duke so it wouldn’t be a problem to get there in a hurry. He didn’t respond, just set up the August 30th, appointment.
I’m not sure Dr. Gray is aware of how long it’s going to be before I can get in there, I think I’ll drop her a line today. I hate to bother her, I know she’s a very busy lady…but I’m suffering here, and she did say she wanted to get this done “now!”.
Accomplishments: Despite my symptoms, I have been able to do a few things. (Yes, mostly stay flat on my back, because it seems the symptoms are less the more I stay horizontal.)
On Friday, I had a massage. Bliss. I was having a very bad day with the disequilibrium that day, but made it through. My massage therapist is a wonder, and very understanding about my conditions.
On Sunday, I went to the grocery story with Stuart, a whole hour and a half out of the house! I felt like crap, but it was nice to get out!
On Tuesday, I went to a Home Owners Association meeting. That didn’t go very well. I was glad I could go, but had to rush home afterward. The tinnitus got so loud while I was there I couldn’t tell the people were actually talking. (I could see their mouths opening, but could not hear the words. All I could hear was the rumbling.) Still glad I went.
On Wednesday, it was a very LOUD day, as I mentioned before. So most of the day was spent on the couch or in bed. But last night right before I went to bed, I felt better. So I cut up a bunch of tomatoes from our garden, and some shallots, also from our garden, with some garlic and had them in the crock pot (the pot part of it) in the refrigerator ready to turn on today to make spaghetti sauce. I’m using fresh herbs out of my garden, so I’m not adding those until it’s almost finished. (unfortunately, neither Stuart nor I got up at a reasonable time today, so we’ll be having spaghetti tomorrow.) Haven’t tried to have spaghetti since my Dietary Fructose Intolerance diagnosis, hope it goes well, I really miss it.
Today. Again, I’m mainly flat on my back, but I’m also doing laundry. So a bit of getting up and down, but it feels good to do it.
The Artist’s Way workshop…well, that isn’t going so well now. The farther I get into this book, the more I don’t agree with some of the things she suggest. Last week was supposed to be reading deprivation. That’s right. No reading for a whole week. Also no TV, or anything like that. Ummm, no reading? Well, that just isn’t going to happen with me. I love to read, and get a lot of inspiration from it. I just don’t get that one.
This book says you don’t need to be religious to follow the workshop. But it continually talks about God, and how your creativity comes from Him, and by opening yourself up to his gift you will find your inner muse. I don’t want to get into a talk about religion here. But, I’m not that religious. I’m not an atheist, but I’m not someone who believes I should turn everything over to God and it will work out. I think he would expect me to do things for myself. To work hard…. I could probably get in a whole big theological discussion here. But I’m not trying to. I can see where some people will be able to get a lot from this book. But I just don’t think it’s for me. I do enjoy the “morning pages”, and the Artist’s Dates. I will try to keep those up. I haven’t completely dropped the workshop…but I’m not as enthusiastic about it as I was when I started.
photo from weblo.com (I just thought this picture was really cool!)
I wish I knew of a different Creativity Workshop that wasn’t centered around God. I’ve searched and found some possibilities, but I don’t want to dish out the money on books that I don’t know enough about. I did find a couple at the library that I have ordered. We’ll see how that goes.
I guess I will have to change my that goal on my 101 things to do in 1001 days. Perhaps, instead of saying, complete the Artist’s Way Workshop, I will simply say, to complete a creativity workshop?
I think I’ll easily pass my goal of reading 100 books this year. (I made that goal on Jan. 1st). I’ve read about 15 in the past month. Funny, how much you can read when you can’t do much else. I’m proud to say that I haven’t just been reading popular fiction. I’ve been reading art books, self-help books, classics and I’ve even been reading a book about the history of the Free Masons. (that’s a really strange read) I’m slowly reading Uncle Tom’s Cabin, but it is quite a good book! I like to jump around from book to book, what I’m in the mood for at that moment.
Things that are on hold:
Of course having these symptoms have put a lot of things on hold. It makes me sad, but I’m hopeful I will be able to continue these in the near future. Including:
Becoming Foster Parents
Losing Weight
Exercising
Taking an ASL (American Sign Language) class. I planned to take an ASL class through a continuing education course at our local technical college, but it starts August 16th. If I can’t even get in to have my pressure checked before August 30th, I don’t think it’d be a good idea to start trying to take a class. I’m checking some things out at the library…we’ll see what I can learn on my own.
Gardening – The garden has been severely neglected. It’s time to start thinking about a fall crop, but that isn’t happening. Our summer crops didn’t do very well. As I think I’ve said before, we’re learning, and this year we have learned a lot about what NOT to do.
Some art projects I have started, and some I have planned.
Some things I want to do to the house. I’m amazed at how fast our house can get out of order once I’m disabled. This house is just too big for us. Especially when Stuart has to do everything alone. (more on this later.)
Almost everything except staying flat on my back….ugh!
Coming soon: Some of those wonderful posts I’ve been thinking up….Anger – what are you really mad at?…..Finding my Happy Place….
Picnic with Ants 