I really over did it on Wednesday, it was a good day, but I’ve paid for it. Would I do it again? Yeah, probably, you never know if you’ll get a different outcome! Yesterday, I was sore all over and had a nagging headache. I did take some Diamox, but not a lot. I’m still a bit afraid of that stuff.
Blinding Headache (image, property of Wendy Holcombe)
Guess, I should’t be so afraid of it! Today, I woke up with a headache so severe I couldn’t stand up by myself. No matter what I took, it would not get better. I was super nauseous. This is the first time I’ve ever considered going to the hospital because of a headache. Usually, I think…if I just take a little more medication, and can fall asleep things will get better. Nope, not so much.
Finally, Stuart talked to Dr. Gray for the 3rd time today, and she said to prop me up, so my head and shoulders are raised. (she actually said for me to sit up first, but I was way to nauseous.) After sitting up about 20 – 30 mins, I started to feel so very much better. So my pressure had spiked again! I will have to stay on the Diamox a bit longer. I don’t like that. I’ve been struggling with low pressure cerebrospinal fluid for a long time, now I’m taking a drug to lower my pressure…crazy. I’m petrified I’ll end up taking too much and making myself have an attack because my pressure is too low. Plus, I really hate the side-effects. My hands and the heels of my feet tingle, and I feel really stupid. Everything, seems dull.
I don’t like it.
Tomorrow, is our 7th Anniversary. We had planned to go out for a romantic dinner…those plans may change. I think a Couch Picnic…as mentioned on Maureen’s blog, Sunshine and Chaos, may save the day. : )
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!
After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.
Ummm. WRONG!
My pressure spiked, and my head has been killing me. I’m taking Diamox to lower my pressure, and that scared the bejebez out of me. (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?) Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.
I’m having the weirdest tinnitus in my left ear. Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part. It changes if I put my hand near my ear. If I touch around my ear, it gets louder! And if I hic-up (which I seem to do very often), it has a very loud DING-DONG. Driving me insane.
Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops. Up to 1500mg at one time…notice not in one day…but at one time.) Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things. But yesterday, the world was spinning, I was amazed I wasn’t throwing up. The world was really moving!!
My usual spot for the past week. Lots of love surrounding me.
I’ve spent the last 6 days in bed. Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.
I feel so helpless. Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating! And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository. I just feel so …. dependent…helpless…and just icky. When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom! Yuck.
I feel like I have some terminal illness, and I’m just waiting to die. It reminds me so much about taking care of my mother when she was so sick. I know she never planned for her daughter to have to do private things for her.
And to top it all off, my hearing aid BROKE! For the second time!
You may remember this picture below when I was showing off my new hearing aids:
The one on the left, is the one that keeps breaking.
For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off. I’d only had the second hearing aid for about a week. I’m so ticked! I’m asking them to make me a new one out of the same stuff the right one is made from. It is a much sturdier material. The clear plastic, just cracks, like old dried up plastic does. It’s so strange. I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then. (I think they have to make a new mold for this type of insert.)
I think that’s all for today.
I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that. It’s called Create To Heal . Come see me, let me know what you think. Join me in my journey. Create Art. Have Fun. Feel Better!
This is a photo post of the procedure I had done on Aug. 22, 2011.
If things like this my disturb you, or if you have an aversion to needles, please do not look.
I’m publishing this, solely for those who have a curiosity about this procedure, and for my own prosperity.
I apologize I do not have any photos of the Lumbar Puncture, or the Myelogram. I didn’t think to ask my husband to start taking pictures until we were at this stage.
1 - Marked Areas where Needles are to Enter.2 - Apply Pressure (the CT scan lines up where to enter, and they take pictures the entire time they are working on each spot)3 - Lidocaine4 - Needle Remains5 - CT scan of previous image. upper right - can see needle in inside.6- Needle remains after first adjustment.7- upper left - where needle was upper right - where needle is after last adjustment.8- More adjustment9 - upper right, where needle is after last adjustment.10 - Final Adjustment11 - add contrast dye.12 - can see contrast on image13 - adding Tisseel. (a Fibrin Sealant)14 - Tisseel being added. Can see pushing the contrast deeper. They put contrast in so they can see where the Tisseel is going.
This series is patching one leak. This had to be repeated for each of the 7 leaks they patched.
Please remember I’m on my face the entire time. I did not see this procedure until I was able to see the photographs. We are relying solely on my husband’s memory for the descriptions. Please forgive us if something is slightly off.
Also, these photos were taken with his phone, so please forgive the quality.
(He was a bit more concerned about what was going on with me, instead of taking notes on the procedure. I keep telling him, that he can do both…but somehow, he just doesn’t believe me.)
I hope you enjoyed your little snippet of my day at Duke Medical.
Thank you to Dr. Linda Gray Leithe and her wonderful team for allowing us to take photos, and for taking such wonderful care of me.
Yesterday I arrived at Duke Hospital at 7:30am (after just 3 hours of sleep the night before…I am NOT a morning person!)
Got in my hospital gown, got my IV in place (of course the girl didn’t listen to me and tried to stick me where I knew she wouldn’t be able to get a vein…yes, I know it feels like a nice vein, but it’s deep and it rolls out of the way…every time!) I told her exactly where to stick me, she said, those veins don’t like to cooperate. I mentioned, this was my 5th time having this done. After, botching the first try (thank you very much for the nice big bruise) she tried where I suggested. Got it, no problems. Hummm, would be nice if they listened wouldn’t it?
Talked with Dr. Gray. Decided if my pressure was low she would do another myelogram, and more patches.
And that’s what happened. My pressure was 17, a little higher than last time, but still low..for me. I had a headache, she added some CSF, and voila, it went away! Just like that…strangest thing, I just can’t get over how that feels.
I was then given a myelogram (that gave me one heck of a headache, luckily, they had nice pain meds on hand for me.)
Then I was patched in 7 places. Most of them in my mid back, one lower.
Marked for CSF patches.
I did ask Dr. Gray why some of the punctures were so far away from the spine. She said, “The reason the needles are out farther is that they are directed to the area around the spine but the anatomy is such that in order to negotiate the transverse processes you have to take a steeper angle, farther out from midline.”
She will compare the old myelogram and the new myelogram and let me know if these were new leaks, or if the patches on the old leaks haven’t been holding. That is the BIG question! From there, we’ll have more questions….if new leaks, why? will I continue to get new leaks? how to stop it? If old leaks, why isn’t the sealant holding? how can we fix it?
I have lot’s of pictures. Some play by play action of getting patched up. I promise to post them soon. Hopefully, tomorrow.
Today, I have a dreadful headache. My pressure may be spiking, getting used to not having the leaks. Taking meds, but it just doesn’t seem to be touching it.
The procedure went well, very minimal pain. My back doesn’t hurt hardly at all now.
Am trying to be cautiously optimistic. (but really, everything is going to be great, isn’t it?….oh, please. oh, please..)
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 just wanted to let everyone know that Dr. Gray answered my email.
“Hi Wendy,
I will work with Horace to find a sooner slot..thanks for letting me know!
hang in there
Linda”
(FYI -Horace is her scheduling secretary)
Today, the hearing in both of my ears is way down. It’s so confusing. The roaring is not too bad, and I just have a slight headache. Am still trying to stay horizontal as much as possible. It does seem to help, but being flat on my back all the time is really no fun.
More soon.
Thank you all for your wonderful support.
I really don’t know what I’d do without the support of my friends on here! Your belief in me, and my strength, is a major part that keeps me going.
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….
The headaches have gotten worse. The tinnitus is mind-boggling.
image from Google images, not sure where the original is from.
Dr. Gray wants to test my pressure again. If it’s low I’ll be getting another myelogram to look for new leaks. If it’s high, I’ll probably be put on medication for a while, it may just be taking my body a while to get used to the higher pressure after patching the leaks.
I’m so tired. And tired of just lying around. Staying horizontal is helpful, so that’s what I’ve been doing most of the time.
Keeping a journal. I can now go in with dated material saying how I felt each day. This is thanks to the “morning pages” I’ve been writing for the Artist’s Way workshop. I write about much more, but of course, my health is in the forefront of my thoughts right now, so I’m writing a lot about that. Now I’m just going to go through my journal, and make a condensed diary of my symptoms. I should have been doing this all along, but I hate it. I don’t like to think about my symptoms on a daily basis. They seem worse when I actually sit down and think about it.
I’m still trying to get my Day Zero list completed. I’ve completed 3 things, and have 10 in progress. Anyone else out there have a list of goals they are trying to complete? I’m finding this very motivating. I bought a Living Social offer for a local Art Class! And we bought one for Swing Dance Lessons! Yes the dance lessons will have to wait for a little while, but the offer doesn’t expire for 6 months. I’m confident we’ll be able to do it before then! I’ve been looking at the classes that are offered at Happymess (the place the offer is for), I’m hoping to learn how to Batik, or perhaps I’ll do a figure drawing class, or even a still life?? So much to do, so little time….just 978 days left, and 98 more things to complete.
I’m not sure how much The Artist’s Way workshop is helping my creativity. I find that most of the time in my “morning pages”, I write about being chronically ill. Perhaps that is what is causing my creative block, what is standing in my way?
However, I do like the fact that I have to take at least 1 hour each week as an artist’s date. I haven’t been able to do some of the things I wanted to do for these dates, like go to the museum, to on a gallery walk…things like that. I’ve had to improvise, and that’s a good thing. It’s teaching me that I can create, something, even when I’m flat on my back.
One of my 101 things to do in 1001 days, is to learn Photoshop. So today, I created something using Photoshop on my artist’s date.
The flowers in this are photos I took of flowers in my garden. Now I’ve learned to cut out subjects from photos and paste it in another image, and I played around with the filters, and text. I’m learning! And I had fun!I’m feeling much better about things. Don’t know why…just kicked myself in the butt, and said enough!
Still having the disabling headaches, and I had no idea that tinnitus could be this loud!! I think I will go insane if I have to hear this all the time. Oh, wait! What’s that you say? Too late. Yeah, I know. Did I mention that the sounds in my head are not voices? Well, not lately anyway. Ha!
Yes, I’m in a strange mood. You have industrial machinery running inside your head for days and see if you don’t get a bit punchy! Today for about 2-3 hours I had the machines in my left ear, and a high-pitched squeal in my right…What the??? (I’m trying to stop swearing. Probably not the right time for that, but I’m giving it the old college try.) What does that mean anyway? “The old college try”? Hum.
Well, I sat up for about 30-45 minutes to eat dinner, and now I’m getting a headache. Sounds like I still have low pressure. ??? Maybe??? Oh, who the….oh wait, I’m not swearing….um….who in the world knows? (better?)
Picnic with Ants 