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.
Thought I'd share a sketch from my journal I drew last week. She looks a little sad doesn't she?
I planned for this to be just a quick update…because I know you are all just sitting at the edge of your seat. haha
but I got carried away…*sarcasm coming*…but that’s just so rare. : )
Stuart had his second interview today, and he had to take a test {shudder}, should know something very soon. (Hopefully today, but no later than tomorrow I would think.)
About me…heck, I just don’t know. Hearing is way down. Not hearing from left ear…although the tinnitus sounding like static woke me up! Don’t you hate that???
Even my right ear is down a bit.
Not having vertigo, but feel off, light-headed. Often feel like I’m about to have a vertigo attack, take meds and it goes away.
Pain is minimal now. The LP site is still tender and has a small welt, but I know that’s because I had 2 within a week.
Still not feeling like I can do much. Mostly in bed. (rolling eyes here…oh, don’t do that..you dizzy headed girl!)
Went to the store, just one mile from our house, day before yesterday. To get one thing. Got home and collapsed, did not feel good at all.
Yesterday I had a couple of visitors for a few hours. It was so nice. A friend and her 1 year old came for a visit. While they were here, I just pushed everything aside, and enjoyed the moment. That child is such a happy kid! It meant a lot to me, I don’t have many visitors.
It wore me out a bit, but it was magical while they were here.
I am so not in the loop with my “friends” any longer. I didn’t know one is pregnant. (well, really I’m not friends with her, but her husband used to be close to us, before they got married…it’s strange) She’s due in February.
I didn’t know another couple had their child last week. Are these people really my friends any more? I just don’t know….
I hate to admit it, but I’ve been pretty depressed lately. I keep telling myself that I’ll take things as they come, and just roll with it. If life isn’t what I expected, change my expectations. But having the hope…the reprieve from all of this for months, and then it all coming back…well, it’s hard. I’m grieving, I know it. Does that mean I’m giving up? I just don’t know.
Those who have been reading my blog for a while know all the major plans I had when I was better. I really thought things would stay that way! I bought a car!! The cutest car in the world. Now, I can’t even drive it. I stated gardening, and it mostly died because I couldn’t keep it up. I was going to be a Mom. Now I won’t.
I wasn’t going to talk about all of this. I’m still hoping things will get better, but some of these things won’t change. No matter how much better I feel again, I will not pursue getting a foster child. I cannot take the chance it will happen again. I’m not even sure I’ll commit to a garden again. Too much expense, time, and effort to just watch it die.
The hearing loss, do I move on and find a way to live in the non-hearing world. I’ve joined an email group that is composed of people with severe or total hearing loss from Meniere’s. They all seem so well adjusted. But some things are so hard to hear. Most have no friends from before their hearing loss, only friends that they’ve met afterward. I simply don’t want to be to the point that all I hear is this damn noise in my head!
The other day i laughed, I had been all teary about things I can’t hear, like the cricket and things chirping on a summer night…then I realized, I hear that sound a lot, even when they aren’t around. I had to laugh. It’s the only way sometimes.
I was able to connect with my Psych today via email. I told him how I felt about things. How depressed I am, and all that stuff. He doesn’t normally use email because of the lack of confidentiality. Yeah, I don’t care who knows about me and my stuff. I know it’s ethical, and he should be that way, but certain concessions must be made for the hearing impaired! Dang-it! We’ll see how this turns out.
What makes someone a patient? When, and in what contexts, do you think of yourself as a patient, and when do you not?
I thought, and thought, and thought….and I came up with…First –
What makes someone a patient? So I looked it up. (I looked it up in a few sources and came up with generally the same answer, but I liked Wikipedia’s answer the best. The original meaning of the word patient is “one who suffers”. The meaning today” is any recipient of healthcare services.”
With this in mind: Yes, I am a Patient. According to both definitions.
Second part: When, and in what contexts, do you think of yourself as a patient, and when do you not?
For that I decided….well, it depends. I know this is a very insightful answer, so I will elaborate. Bear with me, I ramble when thinking about things like this…heck, if you read this blog, you know I ramble often. : )
A lot of the time I do consider myself a patient. My treatments aren’t over, I still have plenty of doctor appointments, I still take a ton of medication, I’m still dependent on someone else, so yes I’m a patient. I had a lot of trouble with my husband being my caregiver for a while. I felt like I was no longer his wife, I was his patient. What could I do for him? He has been everything to me. He not only provides for us, he does the housework, the meals, bathes me, helps me with personal hygiene. Many…many times he’s held my head and calmed me when I had vertigo for hours and just kept throwing up. He’s put in many suppositories, and every time I feel horrible about it, and I cry. I often feel like we’ve changed, I’m now his patient. But I’m more than that..
Often, we will have touching moments together, we’ll curl up and snuggle, he’ll tell me how hot I am…just today he was helping me and brushed my breast, and said, “you know I only did it that way so I could touch your boob.” He makes light of my illness, not in a bad way, he doesn’t dismiss it, but he never let’s it get in the way of being my husband first. He’s simply thankful he can be here for me, just as I would be for him. We enjoy the wife/husband/friend relationship as much as we can. He NEVER lets me forget that I’m more to him than someone he has to take care of.
Yes, I am a patient. But I’m so much more than that!
A Wife. A Friend. An Advocate. A mom to my Furry Babies, Sandy and Max.
And I’m an artist!
Free
Sometimes I want to shout loud enough for all the world to hear:
I AM MORE THAN MY ILLNESS!
But Sharon asked more than that. She asked how I refer to myself. That depends on who I’m talking to.
If I’m meeting someone only Stuart knows, I refer to myself as Stuart’s wife. If they ask what I do, Stuart usually says, “She’s an artist.” He’s proud of me. But if he doesn’t, I usually do say I’m an artist. If the conversation persist for a long time, I may say that I’m not a professional artist right now due to my health. (If you’d like to see some of my work, see my other blog: Create to Heal.)
If I’m talking to a friend, I’m just Wendy. However, recently I felt I had to explain a few things to some of my family and friends. People just didn’t seem to get it. I was told I “deserved better”, and I should “find new doctors”, and “that insanity is trying the same thing over and over and expecting different results”. The treatment I’m undergoing has given me different results. It usually works (on at least some of my symptoms), at least for a little while, once it worked for almost 5 months…I want to get back to that.
So I wrote a detailed explanation to them, letting them know that I have a CHRONIC Illness, it is not going away. I explained exactly what Meniere’s is, and how I’m in the advanced stages of bi-lateral Meniere’s. I know I’ve explained it before, but people seem to think it will go away.
I may not deserve this, but who does? No one I’ve ever met. I explained that I have some of the best doctors in the world helping me, doing much more to try to help me with this disease than most doctors would. Well, you don’t need to hear the whole note. The point is, I felt I had to point out that I am a patient. I didn’t use those words, though sometimes I do. I’m a Meniere’s patient.
Often when I meet people for the first time, I’ll try to hear them or read their lips before I announce I’m hearing impaired. Usually, I have to say, “I’m sorry I’m hearing impaired, can you look straight at me when you talk and talk slowly so I can understand you?” That usually works, but it’s funny to me how fast people forget, they try to do what I ask, then they will look away, and forget all about it.
It’s hard in hospitals or doctor’s offices because they aren’t supposed to talk softly to insure the patient’s privacy. So I say very loudly, so they know I need to hear them, that I have Meniere’s and I need you to talk loudly, look at me….. Often, hubby has to translate.
When I’m talking to or about some of my Chronic Illness friends, that how I refer to both. I’m a chronic illness blogger, I have friends with a chronic illness….we don’t all have the same thing, but we are kindred spirits just the same. We get it.
I’m not sure I really answered Sharon’s questions, but it made me think.
My conclusion?
In my heart, I’m a wife first, because my husband is so very dear to me. I’m mommy to Sandy and Max…my furry babies…again because they are so dear to me. The rests are almost tied. I’m a friend, I’m a blogger, I’m an advocate for my illnesses, and for myself….and last but certainly not least I’m an artist.
I’m sure some would give me even more titles, but these will do for now.
Please make sure and stop by Sharon’s blog, more than once her post have moved me, made me cry, and made me think!
Stuart’s interview went well. He is very interested in this job, says it’s like a previous job he had that was his favorite! He has to meet a couple more people, but it sounds very promising.
I can hear in my left ear! Not clearly…a bit distorted and still low, but I can hear what Stuart says without looking at him (if he’s close). It’s a little hypersensitive, but it’s a great sign!
Less sore every day, but still sore.
Just had to share!
Think we’re going to watch a movie now…with captions…but also with sound…let’s see what I can hear?
First, I’m feeling a bit better physically today. Not as much pain, and not having that weird feeling you get after being sedated.
This is the first time after having this procedure that I do feel like I had surgery. (I may have mentioned that yesterday. Forgive me if I did.)
Over the past couple of years my life had changed A LOT!
My biggest health problem went from being my hip, to the Meniere’s.
Almost everything in my life has changed dramatically starting in the winter of 2009. That’s when the Meniere’s came back full force, and I went bi-lateral. By April of 2010, I was getting the Endolymphatic Shunt Surgery in my worst ear to stop the attacks from happening every day.
It worked, for a while. By October of 2010, I was ready to talk about the surgery for my left ear, the attacks had returned, happening many days per week. That’s when I was asked if I’d be interested in the research study.
And if you’ve been following this blog you know the rest.
But just how has all of this changed my life?
I wasn’t working when this started because of my hip, but planned to go back to work at least part time. That isn’t going to happen.
I had a little reprieve from my symptoms earlier this year. For 4 months. I was almost normal. I took it for granted, and keep looking for the magic button they pushed to make it better again.
I’ve lost a good part of my hearing. I can’t hear in my left ear, and even with my hearing aid it’s a bit off on the right side.
I don’t know how to be a friend to my old friends any longer. We did things, went places, … you know things you do with friends. I can’t do most of these things now. Even when I am feeling better, my hearing is so off, I find it very difficult to spend time with people unless it’s one on one. Restaurants are horrible, Malls…no way, parties are often torture. Even just having one person, if they aren’t in front of me talking straight at me, it’s hard.
A friend recently told me that she was hurt that I didn’t put more effort into our friendship especially during my good period. I look back and realize, I didn’t do much with any of my friends, I tried a couple of times, but my hearing was still such an issue. And people were very busy because, life went on without me, and I was crazy busy, because, life was restarting for me. It was difficult to get back in the swing of things, by the time I finally felt I was finding my footing….it all came crashing down again. I look back and think…if I had known this would happen, I would have spent that 4 months much differently. (certainly not spending most of it trying to become foster parents! That’s not going to happen now…but I didn’t expect to only feel better for 4 months. So most of that time, we spent wrapped up in trying to be parents.)
So I realized, I don’t know how to be a real friend to the people who were my friends prior to my illness. I try hard not to have my illness be my life, but in a big way it is. I have to think about everything I do….how will it affect me, and my illness. How much will it take out of me.
When I do see my friends I try to look better. I get out of bed, if they come over, put on something decent (even a bra!) and at least make it to the couch. Lately, that’s a very big deal.
When I was feeling better and driving, and would try to meet my friends, I was scared. I hadn’t been spending time with most people for a while, and I was uncomfortable, talking with them, trying not to talk too much about me. But my life was changing so much, that was hard. And now, my life is static, and it’s even harder.
Many of my friends don’t like to email, text, or IM…and right now that’s the only way I can communicate. So it’s hard.
I can’t keep my house as clean as I’d like. We decided to get cleaners to come in, but that might not happen again….(more about that later).
I feel like I really needed some time away from here..away from this house…..just a change of scenery. I was scared about seeing my friends in Tucson, how they might react to my hearing, and health issues. But we’ve been emailing and texting…so I don’t think it would that big of a deal. My best friend there is Japanese, so she has a hard time communicating too, I think that makes her more understanding about my communication issues. But, the trip isn’t going to happen. (again, more of that later.)
I’ve been feeling like I couldn’t post a lot of things lately. Things that have really been weighing heavily on me. (like not knowing how to be a friend….I don’t want to be just the “sick friend” people tolerate. If I’m your friend, I want to be more than that. And right now, I don’t know how. I can still listen and try to give advice (if you are willing to “talk” with me by writing.) But it does seem to take a lot of the personalization out of the situation and I know that’s hard. I realize how hard these things are for my friends, but I wonder how many know how hard it is for me.
They have their busy lives…I get to watch the world go by without really being able to join in…they can work, exercise, have children, go to dinner parties, go shopping….things normal people do. I can’t. And it hurts…down deep inside…that I just can’t. I don’t fit in. And I don’t want to be pitied.
Oh, and our house is only 4 years old, and we have to get a new toilet. For the master bathroom. They said it would be cheaper than fixing it. It broke where the tank and the seat are connected. So one night I went downstairs, and found water everywhere. So I’m worried about possible mold problems. I’m being shrugged off about it. Just put a little Kilz on it….on the ceiling downstairs, yes…but what about between the upstairs floor and the ceiling downstairs? We had to move from a rented house once because of mold…I don’t want that to happen with this house.
Another straw landed on this Camel’s back today….I think I heard it snap!
Stuart was told his job will end in one month. They’ve decided they can’t afford him. *sigh*
He has an interview tomorrow. But this breaks my heart. I feel like he will feel he has to take the first thing he finds that pays anywhere near enough, just so we can survive. I can’t help. I can’t do anything to bring in some income. I really want to do something.
This sucks.
But surely, it will get better from here.
Things have to go up from here.
I feel like I’m one of those old cartoons that have been flattened by an anvil…..now just peel me up and pop me out…and things will be better!!
Oh heck, we’ve been through a lot, we’ll get through this.
I’m home from the hospital…again. We got home around 2:30pm.
The procedure went well. As you may recall, last week when my pressure was tested it was at 15 (very low for me….can be normal for others.) Dr. Gray added some Cerebrospinal Fluid (CSF) to find out what level I feel my best at, it was 20.5 (this is high for some people.)
We were hoping that by taking me off all diuretics, and having me drink a lot of fluids, my pressure might remain at my optimal level. Unfortunately, this was not the case. By the second day after the last Lumbar Puncture (LP), I was feeling bad again.
Today, I went in for another LP, and probably patches (depending on what my CSF pressure ended up being.) My opening pressure was 16.5, pretty big drop from the 21.5 I had just one week ago.
So they patched me up. They used a new form of the Tisseel (adhesive for tissues), that is supposed to be much easier to work with and is less likely to set up before it completely covers the leak.. (a problem they had before.)
From what I understand I had 8 patches, but on 6 punctures. Meaning, 2 of the times they put the needle in they were able to reach 2 leaks instead of just one.
I’m still forever grateful to Dr. Gray for adding me on today. She was supposed to be off today, going on vacation. However, she really wanted to get me in before she left, so I will have a good chance of going to Tucson for my father-in-law’s wedding. First, it was supposed to be just one patient today, then it turned in to 3. I feel so lucky to have a doctor who is so dedicated to her patients.
I am extremely sore! Perhaps, sore isn’t the right word…I am in pain!! My lower back…OUCH! I’m sure part of it is because I was still sore from the last LP. I think it’s going to take a little bit longer for my back to feel better, but I DO NOT have a headache! I’m a tad dizzy, but I think it’s the pain medication, not my normal spinning.
1. Take Time to Grieve your Old Life, the Create a New One. – I have found that this comes in stages, or waves, like normal Grief does. You will feel like you’ve gotten through the grief, then all of a sudden it hits you again. You all know I’m a firm believer in…well, this isn’t the life I was expecting, so I’ll expect something new. I have to look at things differently…. If you are a steady reader of my blog, you have seen the many times that my grief is still there. Just yesterday, I got a bit choked up while practicing sign language thinking of the things I may never hear again. But I have the wonderful opportunity to learn a new language and meet all sorts of new people. Oh the things this could lead to!
2. Friendships are affected by illness, often dramatically. – Have I learned this the hard way or what? It’s very hard for me to accept this, but all of my friendships I had before my illness changed. Some have ended, some have continued but it had to change, I’m not the same, and can’t do the same things. (and that’s hard on both me and the friend.)
I like this statement that Toni makes, “As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons—their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.” I’d like to add, I realize now that some of these friendships would have faltered even if I had remained well. Everyone has friendships that falter, not just the chronically ill.
3. Illness is the great equalizer. Anyone can get an illness. There are not boundaries it will not cross.
4. Trust your judgment regarding what you can and cannot do. (and give yourself a break! If you can’t do something, don’t feel obligated to do it anyway, don’t feel guilty…trust in yourself, and know your limits. Take care of YOU.)
5. Find beauty in small things. I don’t think I need to add to this.
6. Cultivate gratitude. This may be hard to do… especially on rough days. (read part of Toni’s list, I thought…yeah! I’m grateful for that too!) I suggest you sit down and think of things you are grateful for about being ill. The list may be short in the beginning, but keep adding on to it as you think of something, or when something happens. Some of the things on my list (that I’m just beginning) is: 1- how wonderfully my husband has handled my illness and all the help he gives me. 2 – that I don’t have to cook every night (yes, I love to cook and miss it sometimes, but it’s nice that dinner isn’t always my responsibility any more. 3 – the opportunity to “meet” so many wonderful people through my blog, and other’s who understand and “get it” 4 – If I have insomnia, I don’t have to worry about getting up in the morning….. I’ll keep adding to it, and think I’ll try to re-read what I’ve written when ever I feel like my illness has caused nothing by trouble in my life (perhaps I should read it more often than that, to try to keep those feelings at bay.
7. Some days you’ll just plain feel weary of being sick. Isn’t that the truth! But normally, I can, eventually, push the weariness aside, and get on with my new life…or simply be grateful I have a life.
8. A loving caregiver is to be treasured. This is very important to me! I try very hard not to take advantage of my husband/ my caregiver. I hope he knows how much I treasure him. I wish everyone who was ill, had a loving caregiver, I know I’m very lucky to have mine, and honestly don’t know how I would get along without him.
9. We’re fortunate to live in the Internet Age. This I am very grateful for. I have more support from my cyber friends than I ever thought would be possible. I never thought I could have such touching relationships with people I’ve never met in person. Also, imagine what it would be like if we couldn’t look up things about our illness? How could we possibly be a good advocate for ourselves, if we couldn’t find out this information?
10. This is just my life. I try to say this when I say, so my life isn’t what I expected…I’ll change my expectations. However, I do feel Toni, says it better by quoting Zen teacher, Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.” She adds, I find great solace in these words. Not everything can be fixed—perhaps not even my health. (I agree, and have found that once I accepted this, life got much easier.)
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.
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.
Picnic with Ants 