After feeling so sorry for myself, and having such a down week…today I felt…as close to normal as I remember!
My hearing is still off. (Down, Distorted) However, no headaches, no spins…I’ve had a great day!!
Went to Weaver Street, my favorite grocery store (Co-Op) that’s about a 30 min. drive from my house. Stuart and I had a fun afternoon, I even cooked steaks on the grill for dinner. And scrubbed the bathroom shower door! No more water and soap scum stains. (I know the whole bathroom needs it, but one little bit at a time.)
One bad thing, every night I’ve been running a slight fever (actually it’s pretty high for me because my normal temp is way below normal. Around 97.4F, tonight it was 98.8F) And I’m achy all over. Took some Tylenol, it’s better, but not gone. Dr. Gray said that the fibrin glue they used for the patches can sometimes cause an inflammatory reaction, and cause this, but it should go away soon.
I heard from my Psych. He was very upset that he upset me in our last session. He said he would be happy to be my provider as long as I wanted and felt he was helping. Plus, we are going to try another drug, Effexor, hopefully, I won’t have the side-effects. It’s also supposed to help with vertigo! Woo Hoo! If I can tolerate it. Some drugs I have all the side effects, especially the obscure ones, and other drugs I have no side effects at all. Hope this falls in the later.
I was in a whimsical mood today, so I drew Lucky Lucy. Nothing like what I’ve been doing lately, but she was fun!
Here’s hoping all of you have as normal a day as possible.
I feel like my emotions are all over the place lately. The stress I’ve been under is starting to wear on me. Funny, I wasn’t even aware it was there, I thought I was handling thing pretty well. For the past few days, I’ve found myself just crying. Crying and crying. My thoughts are all over the place, and I just feel…I can’t think of a good word that will fit…so I sat down last night and listed the letters A – Z and beside each letter, I wrote the first thing that came to mind.
A – Abandoned
B – Blame / Blue / Bad /Brave
C – Confused / Condemned /Caring
D – Desperate / Disabled
E – Effort / Easier
F – Fear
G – Grouchy / Groggy / Guilt /Grateful
H – Helpless /Hopeful
I – Internalized
J- Jumbled
K – Kicked
L – Loved / Lacking / Loathed /Loud
M – Mixed Up /Migraines
N – Nuisance / Nauseous
O – Overwhelmed
P – Put Out / Placated / Period / Pain
Q – Quizzical /qi’ (ch’i)
R – Rough /Roar
S – Sedated /Strong / Stressed
T – Tearful
U – Unexplainable
V – Vexed / Valium / Vertigo
W – WHY? WHAT?
X – X-irradiation (X-Ray, but doesn’t X-irradiation sound cooler?)
Y – Yanked
Z – Zero
During this exercise, when I’d think of certain letters, a ton of words would pop in my head. Other letters, produced little…but they all said something. Yes, much is negative, but there is some positive in there too. On a different day, perhaps the positive would out weigh the negative…but today…well…
There is so much going on inside me right now, that just will not come out. (perhaps, I’m afraid for some of it to come out.)
Having my psych tell me that he felt I needed to fire him, really caused a downward spiral for me. Not that he would say that, I respect the fact that a doctor would say that if they feel they can’t help you…but the timing sucked. Not only did I feel abandoned, I felt untreatable. If he can’t figure it out, why should any other psych be able to. I’ve always been impressed by D’s knowledge, and willing to learn more and more. I can’t imagine having a better psych. I’ve had a few…I know there are some real losers out there…I don’t want to go through that again.
I’ve had some other things happen lately. This camel doesn’t have many more straws in can carry.
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.
My Headache Guide, showing manipulated photos of me to help the doctors understand my pain. I shared this with Dr.D today and he asked to keep a copy. I'm glad he understood it, and thinks it works. My therapist saw most of it on my other blog, and she loved it, so I decided to print some out.
**I’m sure I should proofread this, and fix many things…but you are getting my stream of consciousness, as it came out, at the wee hours of the morning, when I can’t sleep….if it’s too crazy, just let me know…and I’ll do something with it.
Let’s see, what has been happening since my last post, what do I want to share? (other than the headache pain scale)
I know!
I had an appointment with my psychiatrist a couple of weeks ago, he feels I need more of an antidepressant. Given everything that’s going on, he’s concerned the depressive side of my bi-polar disorder will rear its ugly head. Trouble is, I’ve tried just about everything. I usually have side effects, or some drugs don’t work with others I have to take, and some just didn’t do much. So he put me on a brand new antidepressant on the market…Viibryd. (I think I may have mentioned this.) I took it for 4-5 days and had the most violent diarrhea ever! As I told my doc today, “I had to have an ice pack between my cheeks.” He looked so sad.
This is another doctor I love. I’ve been seeing him for 8 or 9 years. Today he looked at me and said, “I think you need to fire me.” Uh, NO! I asked what could someone else do that you haven’t done, and you know my history. I told him, I think all my emotions right now are valid, he agreed. I said that I believe you really have a problem when you are having in appropriate emotions to things. He shook his head yes. I also mentioned that he told me once that I’m so in tuned to my body and my bi-polar illness I can tell immediately if I’m going to have trouble, if I’m the slightest off, and I call on him. He again, agreed and said no one else he sees will do that.
Then he looked at me, and said, but I care so much for you, I want to take the edge off of some of this pain, and don’t want you to end up in the deep end. He said, how about a second opinion…I hesitated. (I’ve really had some horrible experiences with psychs in the past, and am very afraid to go see anyone else. I’ve known Dr. D for so long, I call him by his first name, I know his wife, I’ve met his child….I was with him when he had to deal with his brother’s suicide. (they do think it was accidental. He was very sick and on a lot of medication…and simply took too much.) But that takes a toll on someone. And he didn’t have to tell me. He’s open and honest with me. (I don’t think he’s like this with everyone, but we’ve been together a LONG time, and have a very special relationship. He understands with me, that I’m better with a professional psych person if they share some of them with me. If they trust me with that, then I can trust them.) I don’t want to see anyone else!
So we compromised. He got my permission to share my file with another doctor there in his office and ask if they have any suggestions.
(during all of this, I actually had to lie on his couch because I was so dizzy, had a headache, and my ear was roaring….I actually thought it amusing that I actually lied on the psychiatrist couch…how Freudian.
Oh, I did tell him, if we find out I have high pressure he could put me back on Topamax, I might be stupid for a while, but at least I’d lose weight! He mentioned when I got there that I’d gained weight…I said “that’s not nice.” He looked taken aback, then I laughed. yeah I know..but not really, it’s just moving around since I’m so sedentary..losing muscle mass so the scales are so bad, but the look…is not pleasant. (I looked in the mirror today and thought, “are you really sure you aren’t pregnant?”….oh, I remember you must have sex for that..so guess not!)
Dr. D decided to raise the dose of the Lamictal I’m taking. It may knock the edge off.
So what do you do when a doctor that you love and trust, says they are stuck with you?
I feel certain we’ll work out something. But I can’t imagine leaving Dr. D. When we moved to California for a couple of years and I had to see someone there…Oh My Goodness…that woman was a quack. She saw people in a group. Uh, not ok. And she prescribed Seroquel for me, just took me off of things that were working….Here this is better, it works for both the ups and downs of bi-polar disorder. Yeah, it made me sleep ALL THE TIME…so no I wasn’t manic or depressed, I was doped out of my brain! And she didn’t want to take me off of it! Not cool. I asked to see someone else in that group..he was better, but not D.
I have much more to talk about.
Like, how I’m not dealing that well with being bed bound! How my headaches are worse. How I hate being such a burden. How I don’t like my marriage like this. How to keep a caregiver from burning out, or letting you become their everything?
Let me share the name of my new possible diagnosis….This is not definite, but it’s a mouth full….Intercranial Hypertension with Spontaneous Cerbrospinal Fluid Leaks. Ummm, yeah, what they said.
Still seeing Dr. Gray on the 17th, have asked for something more to help with my headaches for the next 10 days!
Still drawing, and creating something every day.
need to scan some things and put a post on my other blog. (think you’ll like my NeoPopRealism style self portrait…I think she’s a hoot)
I’m not sleeping well. Look, it’s 5am! Still haven’t been to sleep. I have to wait until I’m so exhausted, nothing could keep me from falling asleep, then I can sleep. Why? I’m scared to go to sleep. I’m afraid I’ll wake up feeling even worse. Or that I’ll die in my sleep. (this fear started after I had the drainage from my ear recently because of the infection. I was so afraid it was CSF fluid.) I’m really hoping this will get better after the next appointment. Even if they can’t fix everything at once, I just want to feel better….just a little. I’m not asking for a lot really. It’s ok, if I never can drive again, or work, or get a foster child, or have a garden…yes I want time, but I can deal without them. Just let me be able to do something out of bed, and not be in intense pain the whole time, or feeling like I’m going to fall down with every step.
(I actually used my walker in a store the other day, I’ve never used it out of the house before. (I just used Stuart or the cart to help.) I was proud of myself for using it, but it was difficult, and it’s nearly impossible to back up! Think I might try to use the store’s little scooter next time…but that will probably make me too dizzy.
So we have a few things to talk about.
I think I’ll talk about caregivers next time. How they feel, how to help them, and how we as patients feel because we have to use them. (I’m trying to get Stuart to write a guest post about this, and would love is anyone else would be interested. If it would help, I could come up with a list of questions.) Perhaps, this will need to be a series, not just the next post.
OK, I’ve stopped my ramble for tonight/this morning. Feel free to tell me to never post while being this sleep deprived again!
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!)
thank you to everyone for the love and support you gave me after my last post. You help me more than you can know. It’s so good to know I’m not alone, and there are people out there who care and are sending me such good karma.
All of you would be so proud of me. I wrote Dr. Gray an email and told her exactly how things have been going. Really, you would be proud! I didn’t sugar coat it at all!
She wrote me back yesterday (yes, on a Sunday), and said she was so very sorry. She will call today, and we may have to try different treatments. She mentioned me coming in and reducing my pressure. She would actually take some out. She mentioned I may need a shunt…not sure about that. I have a friend who is getting one in November, she has high pressure and they can’t keep it regulated with medication, so they are giving her a shunt. I don’t know enough about it to tell you, my friend has explained it, but it just sounds scary to me. Here’s a link to an article on Wikipedia that explains it in more detail. http://en.wikipedia.org/wiki/Cerebral_shunt
Today, I’m trying the pills to lower my pressure again. Dr. Gray sounds certain that it’s too high. (remember, the last time I took this medication for a few days I ended up having a bad Meniere’s attack, and she thought my pressure was too low, so I was taken off the medication…it’s so confusing.) But she sounds certain now that I don’t have low pressure. That I’m in that rare margin of people who have high pressure that causes “blow outs” and then when she sees them they have low pressure…she patches them…and the cycle starts over. I’m looking forward to hearing what Dr. Gray has to say. Well, I won’t actually be hearing her, since I can’t talk on the phone, but Stuart’s pretty good at that. I’m eager to find out how different the two myelograms were. If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.
On top of everything else, yesterday afternoon after about 2 hours have having VERY LOUD tinnitus my left ear started to hurt. Then it started to drain a clear fluid. I do have a tube in this ear so it’s easier for it to drain if it gets too much fluid. It didn’t pour out, but I had to keep cotton or a tissue in it or it would run down my face. Like it did while I was sleeping….yuk. Today the draining has pretty much stopped, and the pain is much less, but Dr. Kaylie wants to see me tomorrow. He thinks, “You may have had an otitis media. You should come in tomorrow and let me take a look at it.” So I have an appointment with him tomorrow at 3pm. (FYI, in case you don’t know, otitis media is a middle ear infection, I looked it up.)
I’m looking forward to hearing what Dr. Gray has to say. Well, I won’t actually be hearing her, but Stuart’s pretty good at that. I’m eager to find out how different the two myelograms were. If most of the leaks this time were in different spots, perhaps that’s why she thinks I’m having “blow outs”.
I was so scared after reading Dr. Gray’s email about a possible shunt, and then having that fluid running out of my ear, I didn’t sleep at all last night. I finally went to sleep around 8am, and got up at 11:30am. Funny, I’m not exhausted today. But it doesn’t take much energy to just lie in bed all day, so I’m not using up much energy.
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!
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….
I’ve always said that we must be our own best advocates.
We need to find out as much as we can out our illnesses, and make sure the doctors we choose are up to date, and caring. For me, I like doctors who will think outside the box. Who try empirical evidence, instead of thinking the normal is normal for everyone.
It’s also very important to make sure your doctors understand what is going on with you. That has been a hard thing for me lately.
I didn’t want to admit that I’m not doing well. I have been so happy with the results of the CSF patches, that I didn’t want to think that I might be taking a step backwards. I’ve been keeping my doctor advised of my situation, but I have been downplaying it. Stuart says I haven’t even been honest with myself. I haven’t admitted that Meniere’s has been ruling my life again. No, I haven’t been having full-blown attacks, but I’ve been feeling so bad that I spend most of my time lying down or sleeping. I got the Wii Game Just Dance this week. It’s so much fun, but every time I try to do it, I end up having mini spins and spending hours just wanting the world to be still.
So today I sent Dr. Kaylie an email, and told him just how much this has been affecting my life.
I realized that I have not been taking my own advice. I have not been a good advocate for myself! That is going to stop.
If I don’t hear from Dr. Kaylie by tomorrow I will have Stuart call his office. (Yes, Stuart. Another way this is affecting me? I can’t really hear on the phone very well.) I’ve also decided I don’t feel comfortable driving. Feeling a bit drunk all the time, is not the way you should feel when you are driving.
I feel much more empowered now. Just speaking up, and telling my doctor that I’m disturbed by what is going on, made me feel like I was doing something productive.
**update** Dr. Kaylie emailed me back, and a copy was sent to Dr. Gray (Linda). He said, “It might be a good idea to get another myelogram. What do you think Linda?”
my hearing in my left ear has been down dramatically for 4-5 days. Today, I spent the majority of the day too dizzy to do anything.
Showing how I felt. Artwork by Wendy.
No, I didn’t have full-fledged vertigo, but I came close. I slept late today, I’ve been doing that a lot lately. (I don’t feel like I’ve been sleeping very well since my shoulder has been bothering me so much.) I wake up and just don’t feel that I have the energy to get out of bed, I either just fall back asleep, or get up and soon end up back in bed to sleep a little longer. Today I got up around 10:30am, ate some breakfast, and started feeling worse and worse. I staggered back to bed, took some medication, and hoped it would go away.
For the first time since I had the patches in January, I closed my eyes and could see the shadows behind my eyelids slowly rotating. I was so very tired, and just wanted to sleep, but I couldn’t, because every time I closed my eyes it felt like things were moving.
Finally, around 4pm, I started to feel mostly normal again.
I feel so….oh, I don’t even know what my feelings are right now. Scared and worried, yet confident that the symptoms can be controlled again. Perhaps, I have another leak. Perhaps, they need to patch the last leak. Perhaps, a patch didn’t hold. And in the back of my mind I hear, “Yeah, and perhaps you had a 3.5 month reprieve and your are just S.O.L. now.” As I told a friend of mine today, I feel I need to hope for the best, but expect the worst. If things turn out well, then that’s a happy time, if not, then I won’t be devastated.
I already feel like this darn disease is controlling my life again. We were supposed to have a CPR class tonight, and we had to cancel, because of me. There’s so much I’d like to get done on the house, but that will have to wait. However, Stuart has done a lot. We still have a home visit on Thursday, but who knows when we might be able to take a CPR class again. I’m just so afraid, everything is going to fall apart. But I must say, if things are going to fall apart, I’d rather it happen now. I’d hate to have a child and decide we can’t take care of him or her because I’m too sick. These children have undergone enough losses, they don’t need to get in a home and then lose it too.
I’m going to see Dr. Kaylie, my Oto., tomorrow at 4pm. We have a call in to Dr. Gray. She may want to do another lumbar puncture. Who knows.
I know, I’m jumping the gun. Dr. Kaylie may look in my left ear and tell me that the infection hasn’t cleared up and that’s what is causing my problems.
All I know is that the last few days have felt just like it does when I’m in acute mode with the Meniere’s. Things aren’t happy, and I could have an attack at any moment. There is no doubt in my mind that if I hadn’t taken the Valium and Phenergan when I did, that I would have ended up with a full-blown vertigo attack.
Picnic with Ants 