I tossed and turned last night and had a hard time waking up this morning. Finally, I forced myself to get up around 11am. (I should have stayed in bed.)
After breakfast and a quick trip to the store to see if I could find a dish that would fit in one of the slow cookers at the house, so we could make the cheese cake, I started preparing things for Thanksgiving. (No, we didn’t find anything that would fit, so I had to make 2 small cheese cakes.)
When we came home I started to work in the kitchen. First, I needed to print out my recipe for GF Stuffing. The biggest mistake I made was checking my email.
OK, this is the 3rd time that I’ve tried to write about this. But without getting into details, it appears that I will no longer be able to have a relationship with my niece. My husband’s sister is mad at us because we got upset when they defaulted on something we co-signed on for them. It’s horrible. I love my niece dearly, she will be 3 in February, and now I won’t be having a relationship with her.
So then I cut up the veggies for the stuffing, I should not have used the food processor, because the onions and celery now look more like soup than chopped. I toasted the bread for the stuffing, and cut it into little cubes. I made an herbed butter to put on the Turkey, I made up my own Poultry Seasoning, after reading what was in the poultry seasoning I bought I didn’t want it in my food. I made the cranberry sauce, and the cheese cake. My husband trimmed the asparagus and the green beans.
Then we went to the store and picked up our turkey, and Brussels Sprouts.
When we got home, we saw our neighbor, who was telling us the latest scoop on our HOA. You would not believe the power trip these people are on. They are breaking so many rules, fining people for nothing, and taking away rights. I simply do not understand, we live in a small neighborhood (only about 85 houses), you would think we could all get along. So this got me all upset too. We feel so helpless. There are so many ridiculous things going on in this neighborhood, and even if we could do something about it, right now we just don’t have the energy with everything that is going on with me.
Well, at least the cranberry sauce is done, and the cheese cakes are cooling. Everything is pretty much ready to go.
Except me. I’m absolutely terrified about tomorrow. And all this stress from today is not helping things. I don’t know how I’ll sleep tonight. I’m happy I was able to go by the library today and pick up a bunch of books that were on hold for me. At least if I can’t sleep, I won’t be bored. I do so love to read a good book.
I just finished American Gods, by Neil Gaiman. A very thought-provoking book, of course I’ve liked everything I’ve ever read my Neil Gaiman, so it was pretty much a given I’d like this book. (my favorite of his is a young adult book, called Graveyard. A great book! of course Good Omens with Terry Pratchett is awesome too.)
Reading is one of my stress reducers. What do you do to reduce stress?
On Wednesday I go in for Dr. Gray to look for my spinal fluid leak and give me a blood patch. (I think it’s so cool that they can repair it with your own blood.)
I’m so nervous, excited, scared, apprehensive…….
I want this to work so much. I keep envisioning my life without all the turmoil caused by Meniere’s, and all the pain caused by my migraines. Do you think if I believe it enough it will come true? Or am I just setting myself up for heart ache? Either way, I’m trying to be prepared. And I’m trying to stay busy until Wednesday, so I don’t think about it too much.
Today I went Christmas Shopping with my cousin. I was so nice to spend some time with her. After about 3 1/2 hours, of shopping, and lunch, and just visiting I started feeling off. You know that feeling, I’m not quite at vertigo, but if I moved my head too fast I’d probably fall down? So I took a Valium, and we headed home. We made sure to just go shopping close to my house, just in case something happened Faith could get me home in a hurry. Luckily, everything calmed down after I got home and started to rest and got a little something to eat. I still hate it when things like that happen though.
Tomorrow, I’m going to be preparing for Thanksgiving. I’m going to cut up all the veggies I need, toast the bread for my stuffing, mix up a herb butter to rub on the turkey, make the cranberry sauce, and make sure we have everything we need. I’m also going to plan out a time schedule for all the dishes. When each crock pot should be turned on, so that everything is done at the same time.
Thankfully, the friend who is coming for dinner doesn’t care if my house is messy. I know Stuart will straighten up some, and I’ve begged him to vacuum. The pet hair is out of control. It’s funny, I said that to my husband, and he said he hadn’t noticed. I see hair everywhere.
May you all have a very Happy Thanksgiving.
I will let you know how the spinal fluid blood patch goes, as soon as I feel like getting on the computer after the procedure. Who knows maybe I’ll have pictures from the hospital.
I already have a lot to be Thankful for, but it would be nice if we had a whole lot more to be thankful for in a couple of days.
This is the time of year to remember to be grateful, and thankful for all that we have, and remember those who are less fortunate. May your Thanksgiving find you with much to be grateful for, and realize how much people are thankful for you. Also, may all your Thanksgiving meals be scrumptious.
After my last post I was asked a few questions about what this means and how it works. I will admit that I don’t really understand everything about how decreases or increases in Cerebrospinal Fluid (CSF) affects Meniere’s but I think I can answer some of the questions.
Nicki asked: “if they find the leak, could your hearing come back?” From my understanding, yes, at least part of it. And it would stop deteriorating.
“what’s their theory behind all of this?” I found a pretty decent explination on Dizziness and Balanace.com “The hearing loss of CSF leak likely results from lowering of CSF pressure, which lowers perilymphatic (inner ear) pressure, and results in a picture similar to Meniere’s Disease.” (Walsted et al., 1991) My doctors also think that too much CSF could cause Meniere’s symptoms, that explains why a low salt diet and diuretics work for some people. They may be the people who have just a little too much CSF.
“is this something they think would work for all meniere’s patients or just certain subsets?” I don’t know. I will ask my doctors when I see them again. Since there is still no known cause for Meniere’s there may be many different causes. I’m sure a lot of doctors who would have checked my opening pressure would have said, “oh, you are in the normal range, so it can’t be this.” This is one of my biggest complaints about most doctors, they believe everyone has the same “normal” range.
“could i think of anymore questions to ask you?” Probably, but I don’t know if I’d have the answers. : )
Some of the information from the Dizziness and Balance.com site sounds like what my doctors have said, other parts do not. They don’t mention that an increase in CSF can also cause these symptoms. I know my ear doctor originally expected me to have higher spinal fluid pressure. They think it may also be why shunt surgery works on some people, because they are displacing some of the CSF.
I had a freak accident when I was 28 years old, I was in a commercial kitchen at a nursing home and one of the huge exhaust fans had a blade break and it knocked the cover of the fan off and they hit me in the back of the head and neck, it actually fractured the C-7 vertebra. Dr. Gray thinks this is probably where they will find my leak. The first Meniere’s attack I can remember happened a little over a year after my accident.
I will see my otolaryngologist, Dr. Kaylie, on Monday. I’ll see if he can explain things better to me.
I thought about posting a picture of a lumbar puncture here, but it’s really kinda scary looking. So I thought I’d just post a picture of something happy. After all, the results were pretty amazing.
I went to Duke University Hospital’s Neuroradiology department yesterday and had a lumbar puncture to measure the opening pressure of my spinal fluid. Dr. Gray does this with the help of a CT scan to make sure she is in just the right spot. She also completely numbed the area so I didn’t really feel anything. (Except the stinging from the numbing medicine, but it doesn’t last.) The hardest part of this test for me is that I couldn’t talk and I couldn’t see what they were doing. When I’m nervous I crack jokes and generally just talk a lot, so keeping quiet was not easy for me. I’m so very grateful to Dr. Gray for allowing my husband to come back with me during the procedure. He stayed right there and held my had the whole time, he really does doat on me during times like this. (Thank you honey.)
The insertion of the needle doesn’t take very long at all, but it takes a long time to actually measure the opening pressure. Before the procedure Dr. Gray told us that “normally” below 10 is low and above 20 is high, but she realizes that not everyone has the same “normal” reading. So my opening pressure was 15! Can you believe it? How much more in the “normal” range could you get? Luckily, Dr. Gray uses emperical evidence instead of just saying, ok, you’re normal when test read normal. She decided to add a little artificial cerebral spinal fluid in to see what happened. At first I didn’t really notice anything, I was concentrating so much on my back, I didn’t realize my headache was gone. Then she kept talking to me and I realized I could actually hear her. Not just a word here and there so I could figure out what she was saying, I could HEAR her! More than that, I could hear her out of my right ear, the ear that I have severe hearing loss and haven’t been able to hear someone’s speech clearly in that ear for a very long time. No, my hearing wasn’t perfect, it was still a little muffled, but I could hear. I had been getting pretty dizzy during the procedure and it was gone. How cool is that?
The results? Dr. Gray says I am leaking spinal fluid and she needs to find it and patch it. So I will be having a myelogram on November 24th. They will insert a contrast dye in the fluid filled space around the spinal column. Then I will have a CT scan and the leak should show up. Dr. Gray will then patch the leak(s) with my own blood. (I thought that was cool.)
I asked Dr. Gray, “What if you don’t find a leak?” She answered, “We will.” She is a very up beat doctor who gets so excited when she discovers something. She is making such a difference in so many people’s lives. She told us about a couple of her patients, one had not been able to hear for over 18 months, during her procedure she started hear again. She has taken the pain of migraines away from many patients. She is a very open and caring person, you just can’t help but like her as soon as you meet her.
I stayed in recovery for an hour, got a little to drink and ate a banana. Then I walked myself out. On the way home we stopped and got something to eat. My back really started hurting while we were sitting there, but as soon as I got up it helped, and when I got home and lay on the couch I felt much better.
Chilled Disequilibrium by Wendy Holcombe
Unfortunately, about 12:30am I woke up with the vertigo starting. I took Valium, and Phenergan but everything just got worse. I had the complete spinning fast rotational vertigo complete with some of the most violent vomiting I’ve ever had until about 4:30am. At that time I simply collapsed from complete exhaustion. (during all of this I had 3 Phenergan suppositories, the first was lost with diarrhea.) I do not remember being that bad off since the time my husband called for an ambulance because I was scaring him so much. He asked many times last night if I wanted to go to the hospital, but he had to agree with me that the last time I went they couldn’t do anything that we weren’t doing here.
Does anyone else hear unusual sounds during an attack? I don’t mean just tinnitus (the roaring was so bad last night it was driving me insane). But I hear things that sound like words off in a distance. It’s most disconcerting. Lately, with my tinnitus I’ve been hearing a tick. When I’m trying to go to sleep at night I really notice it. It’s not a rhythmic ticking sound, just once in a while I’ll hear something tick or click. I’ve asked my husband if he can hear it and he can’t, I thought maybe I was just hearing a certain frequency when I couldn’t hear the others so I put in an ear plug and I could still hear it. This new noise is most annoying, I’ll be almost asleep and then, Tick, and it startles me awake.
Today, I feel horrible. I haven’t been out of bed, except for the many trips to the bathroom with diarrhea. My stomach hurts so much every time I eat or drink anything.
Stuart talked to Dr. Gray today. She is sure that this severe attack was caused because she made things better yesterday and now it is leaking out again.
I will be so happy when this is over. I don’t know if she will find a leak, I hope so. If she doesn’t, I’ll cross that bridge when I get to it.
Right now, this looks so very promising. Of course, I will keep you informed.
It just amazes me at how much we have to search and search to find the right doctors. I’ve seen so many doctors and, let’s face it, some of them shouldn’t be practicing medicine. Many are just in it for the money. Many get very uncomfortable when your symptoms are out of their comfort zone and they just drop you. I’ve had a doctor who did that, he actually called me on the phone and said he couldn’t see how to help me and didn’t think I needed to come back. No referral to a doctor he thought might be able to help, no option to for my medications, nothing. Those are doctors who just don’t care about their patients.
You could also do a lot of research trying to find the right doctor, but then not have the resources to go and see him or her. This really bothers me. I wish there was some way I could help.
I feel very fortunate I finally found Dr. Kaylie, who sent me to see Dr. Gray. These 2 doctors have given me hope that I haven’t had for a very long time, and they treat me like a person, I believe they really care about what they are doing and want to help people. I’m also very lucky because I only live a few miles from Duke. (I know I give Duke a lot of praise but I know, not all the doctors at Duke are as caring and through as these two are. It was a doctor from Duke who dismissed me as a patient over the phone.)
I get the Lumbar Puncture today at 3pm. I’m nervous, a little excited, and getting hungry.
As I said, the procedure is at 3pm, they don’t normally sedate you for this procedure, but just in case they have to they don’t let you eat anything for at least 6 hours before the procedure time. So I had a pretty big breakfast at 8:50am and I can’t eat anything else until after they are through with me.
I’m really not a good person without food. I already have a headache, and I’ll get dizzy, my stomach will actually hurt, and I’m just not going to be a pleasant person to be around. Right now I think I’ll go take a shower and then, I’m going to try to take a nap. If I’m asleep, I won’t notice I’m hungry, right?
I’ll let you know how it goes. I probably won’t find out the results until Monday when I see Dr. Kaylie. It would be such a miracle if this is what is causing the Meniere’s. I’m very grateful that I’m seeing a doctor who is working on finding a cause for Meniere’s. It’s so exciting to be a part of this. I’m trying so hard not to get my hopes up, but it is very hard not to. After all the suffering that this disease causes, we all need a little hope. If not this, then there will be something else. I’ll keep on trying, and I know my doctors will too.
On another note. I think I’ve figured out another trigger for my GI distress. Anything with fat in it. It seems that every time I eat meat I get sick. The lower the fat in the meat, the less GI distress I have, but still. I think it’s time to seriously look into becoming a vegetarian. I’d like to go vegan at some point, but one step at a time. I really like cheese, and eggs. I don’t look forward to figuring out how to bake without eggs. Maybe I’ll just do egg whites for a while, after all the yoke is where all the saturated fat is. I already buy my eggs from a local farm where the chickens are allowed to roam and aren’t feed all that nasty stuff. We are very lucky here in Durham, NC because there are a lot of local farmers who are very eco-conscious. It’s easy to find local organic produce. You can even tour the farms and on some you can go and work. (you can literally work for food – haha)
I do have a hard time in the winter with local produce though. I like winter squash and stuff, but long before spring, I am really missing the summer fruits and vegetables. We lived in Palm Springs, California for a couple of years and it was just so nice in the winter you could go out and just pick lemons and oranges and limes right off the trees. The streets were lined with fruit trees and they would be so heavy with fruit, when I would take my afternoon walk I would often just reach up and grab an orange to snack on along the way. We had a lemon tree in out yard, I loved having fresh lemons to keep the house all fresh smelling and fresh lemonade! (of course, summers there weren’t any fun at all)
If I could just spend the spring – fall here and the winter out west I think that would be ideal. I must say, when we were in CA my Meniere’s didn’t give me near as many problems. But who’s to say I wasn’t just having a good spell anyway?
Picnic with Ants 