My life disABLED with Chronic Ilnnesses, it just IS. Taking one moment at a time.
Author: Wendy
I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses.
I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!
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 mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment. Something down in my gut that is just eating away at me. Perhaps that is a bit strong…but I wanted to make a point.
I’ve been snippy, grouchy, teary, snappy…. Oh, let’s just say it, I’ve been a bitch lately.
Not all the time, at times, I’m a perfectly likable me. Positive, light hearted, smiling, laughing… Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.
Finally, I tried to take a step back from the situation. And ask myself, what are you REALLY mad at. I’ve come up with a few things, some I bet you have felt at times, others may just be me. I don’t like being like this. I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive. No, not just survive, I will thrive!
It has been hard lately. Spending almost every minute lying down. Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.
And that my friends is what, I believe, I’m mad about!
I don’t want to sound petty, or ungrateful, or as if I don’t have hope. This is just anger. It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it. (perhaps giving it a voice will help it to go away.)
I’m MAD…
that I’m not cured. I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned. That this procedure gave me hope, and I would cherish every moment I had as a “normal” person. (I’m not saying that those feelings have changed. I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
that I thought this was over. I don’t feel that I was being as realistic as I should have been. I’m not sure I was being honest with myself. I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in. I put those thoughts aside and thought about the future…for the first time in a long time.
that I don’t feel I can plan for the future any more.
that I’m scared.
that I can’t do things I need and want to do.
that my house needs to be cleaned.
that Stuart has to do everything, and I keep getting angry with him when things aren’t done. Or done the way I would do it. How can I get angry at him for this? Or am I really just angry because I can’t do it?
at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook. I know this has been going on for a long time, I know that my friends have lives and responsibilities. I don’t blame them. But I’m still hurt, and angry. I don’t want them to feel bad. I don’t know what I want, or expect. I have 2 local friends who really keep in touch with me. 1 emails me often, 1 often chats with me on line. (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
at my family. Who have never offered to help in any way. (I must put in here, that I didn’t expect it.)
when I read about others who have so much more help. Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them. (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband) But I am hurt, and disappointed that I don’t have more people who reach out. And I’m mad at myself for being jealous of those who do.
Oh, I’m certain I could go on and on, but I’m sure you understand by now.
This anger isn’t deserved. It’s not even real in some instances. I think it’s mostly about the situation. I don’t want to be in this situation, and it makes me mad. I don’t want my husband to be in this situation, and it makes me mad. I don’t want to have my life on hold, and it makes me mad.
I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.
When I got so much better after my patches in January, I started to see my friends at gatherings and things. At first it was very hard. I was angry at them. It’s hard to explain. These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything. Even when I would reach out and say exactly what I needed, I usually didn’t get it. (I’m not talking about big things here, I wanted contact, emails…anything) As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time. Finally, I was beginning to feel better about things. We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger. I don’t want to feel like that again.
I am overwhelmed by everything that is happening to me. In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears. I just got hearing aids in March, and I can barely hear out of them now. When I don’t have my hearing aids in I can barely hear myself talk. I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better. So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again. (I’ll see Dr. Kaylie next month, I’ll ask him then.) Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.
This hearing thing makes me so mad! Partially because of losing my hearing…but not really…I think I’m handling that pretty well. But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on. So now, I’m constantly on alert. I’m so jumpy, and jittery. Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon. Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack. (yesterday, was more of the same. Lot’s of mini-spins.)
I am trying very hard to deal with this anger.
Dang-it! I’ve had some crappy stuff happen lately, and I’m pissed!
I’m also trying to come to terms with it. To feel some of it and not bury it. Just writing this helps. Now I hope I can deal with it, and move beyond.
But, I’m also very grateful that if this was going to happen, it did it now. Before we brought a child in to our lives. I’m grateful, that I have good doctors who really care, and will do all they can to help me. (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!) I’m more than grateful for my loving husband, and all that he does. I just wish I could help him more, or get him some help.
I also want you to know…ALL OF YOU…how very much you mean to me. How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!” http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html Thank’s Kelly, I needed to hear this. I’m feeling more thankful already. I promise I will not let this anger fester and become unrelenting bitterness.
I realize that it stems from the situation I’m in right now. But, that doesn’t help much.
I hate feeling angry.
So I decided to be very silly!
Purple nails with bright green polka dots!
One good thing about not being able to do anything for…has it been over a month now? Dang! Oh, back to the good thing, my finger nails look great! I mentioned this to a friend of mine, and he suggested purple polish….a few days later, I added Polka Dots!
Now, you know it makes you smile to think that a 48 year old woman has Purple Finger Nails, with Bright Green Polka Dots!
**Note – my husband said that it didn’t surprise him at all. Just as the orange hair didn’t surprise him. “It’s just you!” He also warned that if we ever are able to foster, that our child will think he or she has a really strange mom. I disagree, I think they will think I’m a really cool mom! (yeah, right…how many kids really think their parents are cool?)
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.
Illustrated journals can be so interesting…and inspirational. Here’s the beginning of mine:
Decided to draw what I could see.Having a Bad Balance Day. Thankfully, the net will catch me. (today my net has been Stuart, thanks hon)
The past two days I haven’t been able to hear much at all. The tinnitus has been better, and the headaches have been less intense…but hearing…well…not so much.
Today, I had a mini-attack. I felt it coming. The world was starting to move, my stomach was doing flip-flops, I had that hot feeling….I just knew things were going to start violently spinning any moment. Stuart kept a cook head, as usual, I was a little panicked, but worked hard to stay calm. After taking Valium, and Phenergan…plus a phenergan suppository…things calmed down. I’m still off balance, and not trusting myself to walk without my walker. But I didn’t throw up!!
I hope you enjoyed my illustrations. It felt good to accomplish something, even though I couldn’t get off the couch!
This really started me thinking of how my “Happy Place” has changed over the years.
When I was a little girl I had a couple of “Happy Places”. One was my closet. It wasn’t a very big closet, but I loved to take everything out of the floor, and just play in there, I even remember camping out in my closet. On the same note I had a toy that was like this big tunnel tube, I loved it. Both of these places gave me a quiet place for me to go and think…or hide…and let my imagination run wild.
My tube was bright Green, with a design on it. But you get the idea.
My next “Happy Place” that I remember was my “tree house”…
This is a tree house palace compared to mine...but I loved it.
I “tree house” put that in quotes, because it was really just boards I nailed together as a makeshift ladder to get up in a tree, and a couple of boards wedged in the branches to sit on. But oh how I loved it…and the happy times I spent there. Again, a place I could go to think, hide, be by myself….and let my imagination run.
When I was a teenager, I had 2 “Happy Places”. One was right down the road from where we lived. There was a family who had horses. I used to sneak on their property and visit the horses. After a while, I started to brush them, and groom them….one day I was caught. Luckily, the family was very nice, and offered to let me ride any time I wanted as long as I continued to come and take such loving care of their horses. (What a deal! I was 14, and considered this my first job.) On the back of those horses, I felt free! Safe, and happy! I had a purpose…and I loved every minute of it.
Me, just a few years ago at Long Beach, CA. As you can see, still a Happy Place for me.
My other “Happy Place” when I was a teen…and I admit it is still a very Happy Place for me…is the beach. We used to live a little over an hour from the beach. When ever I was having a hard time, my mom would say, “Let’s go to the Beach today!” We’d take off, and spend the day at Huntington State Park (near, Myrtle Beach, SC). It was a bit secluded, we would take a picnic and just have the day together…and by the time we left, what ever was on my mind, what ever was troubling me…well my mom knew all about it, and always seem to make it better. The beach was our special place, and still whenever I get a chance to go to there, I can feel my mother’s presence. (Unfortunately, I can’t go as often as I used to.)
The Jockey - One of my paintings from college.
In college, my “Happy Place” was in the Art Studios at school. I was at peace there. I was in my element. A friend once told me that she loved art, but I ate, drank, and slept with it! It was my life…my how things have changed. I miss that girl. (I was excited last week when there was a Painting Category on Jeopardy, and I answered every question right! Perhaps I still know a thing or two?) When we bought our house, I planned for my art studio to be my Happy Place, but things just haven’t worked out that way. Hopefully, I’ll begin to feel it again soon, but for now, it’s mainly just a room that stores all my art supplies. It kind of makes me sad…all the potential…but still full of a lot of hope, and vision for the future. If you are a regular reader of this blog, you will know that I’m currently trying to find my artist within again. I’m sure she’s in there, look forward to meeting more of her soon.
This week I’ve been thinking about where I feel the happiest. Admittedly, I’ve been going through a rough patch, and a happy place can be a bit hard to find. So I thought…and thought…I remembered all my past happy places, but they just didn’t seem to fit now. Then I felt it…the warmth enveloped around me…and I knew I was in My Happy Place.
I found a site that has some interesting information. http://callierlibrary.wordpress.com It’s links to different medical studies. If you search for Meniere’s Disease, you will find a lot of post about different studies on the subject. That’s where I originally found the study above.
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….
Picnic with Ants 