I’m already feeling icky again. Dr. Gray wants to try to get me in next week for more patches. Hopefully, it will work out, but we all know how, her wanting to get me in next week has turned into a month later before. That’s the bad side of having such a good doctor, she is in high demand.
I know many people are thinking…Dang, can’t they get this right? Why so many patches? ect.
From everything bit of research I can find on Cerebrospinal Fluid Leaks and Patching them, it often takes a number of times. This is a tricky thing they are doing. Sometimes the patches simply do not adhere to the entire leak, sometimes, they end up being too thin and it breaks through….there are many variables. Sometimes they just don’t work, and some people end up having to have surgery. (luckily the patches normally work…eventually.)
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.
On Tuesday I will be receiving 6th, Lumbar Puncture. I know it’s not a big procedure. It doesn’t really hurt. But I’m so scared.
After the first LP, they thought they knew what was wrong with me. Low CSF pressure caused by spinal fluid leaks. Simple diagnosis, treatment hasn’t been as simple…I keep getting leaks. So now. as I mentioned before, we are facing a possible new diagnosis. (Intercranial Hypertension with Spontaneous CSF leaks) From what I understand, even harder to treat. The meds that are supposed to help, well, I’ve been taking them and either the side-effects are too much, or I don’t see where they are doing anything.
A possible shunt has been mentioned. (I don’t even want to think about that right now, but I know it’s a real possibility.)
I have such conflicting emotions right now. I feel emotionally stronger in many ways, and in other ways, I’m scared out of my wits.
The art has been helping me so much! There is a possibility I may have a small show in the next 6 months or so. Something to really work towards.
I have finally come to terms with the fact that many of my friends are simply not going to be there for us. But we have some good neighbors who proved recently that they can be relied upon. It’s hard to explain, but I’m better about it. Not as hurt…finding out who are really important to me.
So, back to the fear. What am I really afraid of? I think I’m mostly afraid of an iffy diagnosis. One of those, “Well, we know what it’s not….”
That’s where my head is tonight.
I’ll leave you with this drawing I did the other night. I was trying to sleep…all of sudden the idea of this came to me..I had to draw it!
Window of the phases of my life.
You can find out more about what each window pane represents on Create to Heal.
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.
I created this the night after my bad attack. (W. Holcombe all rights reserved)
It’s the little things that make me happy right now. I felt so proud of myself today.
I spent the entire day out of bed. I even got my meals for myself…well, all except breakfast, Stuart was making that for me when I got up.
The meals I got for myself were just left overs, but I did it!
I walked by myself, and cleaned myself up…all by myself. (yes, these are things I haven’t been able to do without help.)
I filled 5 pages in my sketch pad today.
My internal clock is still way out of whack. I can’t seem to get to sleep before 3 or 4am. …and then don’t get up until about noon. If I try to get up earlier so I can go to bed earlier, it just doesn’t work. Either, I feel like crap all day, and risk having an attack because I didn’t get enough sleep. Or, I still can’t get to sleep until the wee hours of the morning. Ugh. Guess I’ll talk to my doc about it next time. I hate taking something to help me sleep, but perhaps I could take something for a little while to get my clock back on schedule.
I hope I have more days like today, and continue to feel better. It’s been a rough road lately….but I’m making my way down it.
I feel so guilty. I’ve told so many people about the success I was having after having my CSF leaks fixed. I know of a few people who sought out the treatment because of me. I’m not saying that I’ve given up, or that I think things won’t get better. But right now I’m not sure, and I’m just afraid I made it seem too easy. I think I’ve always let everyone know this is an experimental treatment. However, it was working so well for me. I was normal again. I just want for all of us who have that feeling…being normal. Did I give people false hope?
Even if this treatment ends up not working for me, I have always said, I hope they will learn something from this, and can help others.
Once again, I feel at a loss for the right words to express how I’m feeling.
I’m full of guilt, fear, and anger, yet…I’m still full of hope, and feel like I’ve found a part of me that has been missing for a long time.
On Saturday I woke up with my ears feeling very full. (they normally feel like I have wet cotton in them, but this was worse.)
I noticed I kept having to ask my husband to repeat himself. (even more often than usual)
These should have warned me, but I didn’t listen. For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.
But I was feeling pretty good! We decided we’d make a trip to the grocery store. I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved. I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.
Things settled down, and I settled in for a day of drawing and relaxing. (forced relaxation, but relaxation all the same) Stuart decided he’d mow the lawn. (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.) He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him. I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink? I have no idea…but I started to feel bad…really bad.
I called Stuart’s phone…nothing. I called again…nada. I knew there was some medication on the bar in the kitchen, if I could just get there. I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar. I didn’t make it. But I made it to the window and Stuart saw me. He walked in the door, and I hit the floor. He got me some medication, but it was too late. (who knows it may not have worked this time anyway.) I didn’t feel that bad, really. I felt like I was having a mini-attack, but would be fine. Until I started to get off the floor. I couldn’t do it. I tried to crawl to the couch. That wasn’t happening either. So I lay there behind the couch clutching the carpet…and I panicked. I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor. Then the vomiting started….and a headache from hell! Stuart said, “I’m calling an ambulance.” I said “NO!” (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.) Stuart was concerned my CSF pressure was dropping too low. I told him to call Dr. Gray.
Luckily, the pain and the attack didn’t last very long. (less than 2 hours I think) I dozed off for a couple of hours. When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit. We cleaned me up and put me to bed. That’s when the terror set in.
I was absolutely petrified to go to sleep. I didn’t feel quite right, and I didn’t want to wake up having an attack. But it was more than that, I don’t understand it really, but I was scared. I was also very afraid of being alone. If Stuart moved, I panicked. Was he leaving? Were was he? I was terrified, and it wasn’t rational.
Since then, my headaches have fluctuated between moderate to severe. The day after an attack, I always have digestive issues. I end up in the bathroom a lot. Every time I had to go, my head would explode.
Stuart and Dr. Gray emailed back and forth, and talked on the phone. She said to give it a few more days, but she thinks I may be a rare case. Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this. She treats them for the low pressure, only causing more “blow outs”. (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)
I have a question for my fellow Meniere’s sufferers. When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things. (like the flu, food poisoning…or having a bit too much to drink..) It’s violent. I gag so much, I can’t breathe, it’s so scary. My stomach hurts so much, and I constantly feel like I have to go to the bathroom too. This time I had such violent spasms that my jaw popped. It was so painful, my mouth was trying to open further than it should.
So my question is: Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?
I swear it’s so horrible I would do anything to stop it. All I want to do is die during these attacks….just make it stop.
Why can’t they fix us? Why can’t they at least figure out how to control the symptoms? I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.
Don’t get me wrong. I’m very grateful that I had nearly 5 months of being virtually symptom free. This is the first severe attack I’ve had since January! I’m very happy about that, and it does give me hope.
I am also so very grateful that I have the support of my husband. I have such respect for those of you who have to endure this without help. I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years. I have been through attacks alone. It was terrifying…and at the time I didn’t know what it was.
Stuart really helped during this attack simply by talking to me the whole time. Telling me how much he loves me. Repeating soothing words over and over. I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.
I thought some of you might be interested to see the results of my past two hearing tests.
There’s a lot of information there. The biggest thing that makes it hard, is the word recognition. They simply can’t fix that with the hearing aids. So, according to the latest test, I’m recognizing about 84% of the words I’m hearing in my right ear…and that’s if they are at the right frequency. I’m not deaf! Some things are difficult, but hopefully this is temporary, and if not…I’ll learn.
We still have much hope that things will change. My doctors believe the hearing in my left ear will get better. We’ll just wait and see.
I know many of you are concerned for me right now. I’m doing OK. Really. It’ll take time to process everything Yes, my life’s plan will need to change. I’m trying to look at things differently, not looking back and thinking of what I’ll miss, but look forward at what I can accomplish.
Last night I was writing and drawing and thought I’d share something I wrote:
Journal Entry Sept. 8, 2011
What started me on this journey?
The need to write and draw is now overwhelming to me.
How did I ever give this up? How did I lose so much of ME?
***Hey You!***
Yes, You – That girl you look at in the mirror every day —
Welcome Back!
p/s Please don’t leave again. I’ve missed you.
Thank you all for so much for all the support. Yes, I’m going through a rough spot…but with the support I get from you…my dear friends…it’s easier.
I never dreamed I’d feel such an out pouring of support from people I’ve never met in real life. Many of you have reached out to me when I’ve needed it most. I only hope in some small way, I can give to you as you have given to me. thank you.
I started writing this post a few different times, but nothing I say seems to come out right.
I don’t want to sound all pessimistic. I’m not…I’m hopeful…but I’m tired….and a bit frustrated.
I saw the audiologist, had a hearing test, and saw my Oto. , Dr. Kaylie, on Tuesday. (August 6th) It was a very emotional day, and I feel like all the answers I have are still…wait and see….
My hearing test was dismal. My right ear is pretty steady, my left ear is now pretty useless. Yes, even with the hearing aid. It is hoped that it will come back, but it’s a wait and see kind of thing. I scored 0% on the word recognition in my left ear. This was my “good” ear before. Now the volume is down like the right ear, but the sounds are so distorted I can’t understand them. It’s heartbreaking really.
Finally, I asked Dr. Kaylie, “do you have any idea if I will continue to have relapses?” He said no, “We’re in uncharted territory here.” I was pretty sure that’s what he’d say. But it still stung.
I explained that we were in the process of getting licensed to become foster parents, but without knowing, I just don’t see how we can. Dr. Kaylie, looked very sympathetic, but he couldn’t say much. He did say, since things improved so much before, he believes it will again. That my pressure hasn’t stabilized yet. He has every hope that my hearing will improve. (for some reason, I’m not as hopeful. I guess I’ve heard it before, with my right ear, and it didn’t get better, but at least it is stable now.)
If I take out my hearing aids, I can’t hear anything but very loud noises. I can not make out speech. Just a few months ago, I could still hear, and understand most words. If I wear the left hearing aid, it’s just so I’ll have the volume control to work. (button on right hearing aid is up, left is down) There’s really no reason to wear it. So did I waste $2000? maybe…We have to wait and see if my hearing improves….
Will I be able to drive again?..We’ll have to wait and see if the disequilibrium gets better….
Headaches?….we’ll have to wait and see when your pressure levels out.
So I’m in waiting mode…..and I don’t like it!
I will post my hearing test for you to see soon. (right now I can’t get it to come up on my computer…..I do have a love/hate relationship with technology.) I will post the test from earlier this year, and the one from Tuesday. You can see how much things have changed.
I posted a photo I created on my Create To Heal Blog, that I’d like to share here too.
Fractured Ear (Hearing) by W. Holcombe all rights reserved.
During my hearing test I started to cry…just a little…I could tell things were very bad. Then the audiologist tried to adjust my hearing aid to help…it didn’t work. I held it together. Until I got to the waiting room and saw Stuart, then I broke down.
I have to admit, I’m scared now. More scared than I think I’ve been in a very long time. If the hearing doesn’t change in my left ear, and if my right ear’s hearing diminishes…I won’t be able to hear. It’s already so hard, just hearing parts of things. Missing so much. Dr. Kaylie says I’ll never be deaf, that he would give me a cochlear implant. But, I’m scared.
And, now once again, I have to change my plans for my future. I have to come to terms with the knowledge that, I will never be called Mom. This is something that’s going to take me a bit more time to process.
Picnic with Ants 