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.
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.
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!)
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.
Kelly, over at Fly With Hope is doing an amazing series this week about migraine and suicide. (She also talks about how those with chronic illness, and chronic pain are in crisis.)
In her words:
“My goal is to decrease the stigma of the discussion of suicide so that we might be more supportive in the chronic Migraine/chronic pain community on this issue.”
“Please check in every day as there will be posts with (anonymous) contribution from the chronic Migraine and chronic pain community on topics related to chronic Migraine/chronic pain and suicide including how to cope when you are close to the end of your rope, personal stories from those who have been there, on suicide and faith, a post especially for loved ones (family, friends, caregivers) and links to other blogs/articles on Migraine and suicide.”
One of the contributors to this series is me. I don’t mind anyone knowing, and some of you may recognize that it’s me when you read it.
Please know, if you are ever in that state, if you ever feel like you just can’t cope….or even before you get there….Please feel free to get in touch with me. Email me! I will gladly give you my phone number and we can chat….or if I’m not hearing well, we can IM or text. Just know you are not alone.
I’m a firm believer that everyone with a chronic illness should have counseling. We need to be better equipped to deal with our situation. My husband and I see a therapist together. It has made this intolerable situation, much more …well…tolerable.
But if you need a friend to talk to…I’ll always be here. Many of you have touched my life in such a way I couldn’t begin to put words to it. After such warmth, love, and compassion from so many of you…I have promised to always be there for those who need me.
Again, please check out Kelly’s blog this week, this should be a very moving series. Kelly has chronic migraines, and Meniere’s.
Then, I thought…why not write about that….and some favorite tunes too. (even if I have a hard time hearing them right now.)
Over the past couple of years my hearing has dropped dramatically. What I can hear, even with my hearing aids, isn’t quite right. The biggest thing that I run into trouble with is music. It doesn’t sound like it’s supposed to. It’s tinny, and it’s just off. When I’m reading a blog, or something else on the internet and they have a video embedded, I can’t hear it. There is just so much, I can not hear. And it’s kind of sad. Yet times I hear the most beautiful sounds….a bird singing….that would be on my playlist.
Most of the music in my house is from my husband and I being silly. We have such songs that we sing as “Stinky Dog” (no it is not as bad as Smelly Cat from the sitcom Friends)…Oh and “Fat Dog”…really she isn’t fat, she used to be a little over weight, but there is this silly cartoon that used to be on called Cat Dog, and the song came from that. There are various Sandy and Max tunes that are made up daily.
Now for one of my deepest darkest secrets….I am a gassy person….and I make silly songs about it when Stuart picks on me. He never burps…oh he lets loose on the other end…but hardly ever burps…I belch! So we have the song…Burpin’ Wendy, walkin’ down the street….Burpin’ Wendy, don’t know if we want to meet…
Well you get the idea.
It makes us laugh…sometimes I laugh uncontrollably…that is the true joy of living with my husband, he can make me laugh until I wet my pants.
Other songs that make our house a home every day are silly songs from cartoons. I have to dance a Backyard Beach(you really should go to this link and hear this song…if nothing else, it will tell you loads about me.) by Phineas and Ferb. And just love the song...I’m Fabulous from the same series.
I also can’t keep still to I Like Move It from the movie Madagascar.
Then there are a couple of songs from my wedding that still touch my heart. (I’m sure they always will. If you are a regular reader to my blog, you may have already heard some of this.)
We walked down the aisle to Story Book Story (the theme song from The Princess Bride). Yes, we. I wanted our wedding to focus around us, and not just the bride, especially since I was 41 when we got married. We left the ceremony to the Linus and Lucy song, other wise know as the Peanuts theme.
And my most favorite song of all from our wedding, is the song my husband picked out for our first dance. The version we had was sung by the Bezlebubs, and acapella group. I couldn’t find it anywhere on the internet. So I decided to include the lyrics.
(I did not take this photo, but could not find who to credit it to...if you are out there...thank you.)
Bridge Over Troubled Waters
When you’re weary
Feeling small
When tears are in your eyes
I will dry them all
I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down
When you’re down and out
When you’re on the street
When evening falls so hard
I will comfort you
I’ll take your part
When darkness comes
And pain is all around
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down
Sail on Silver Girl,
Sail on by
Your time has come to shine
All your dreams are on their way
See how they shine
If you need a friend
I’m sailing right behind
Like a bridge over troubled water
I will ease your mind
Like a bridge over troubled water
I will ease your mind
He told me he picked this song because I was his bridge, and he always wanted to be mine. I can honestly say, after 7 years of marriage, I have walked that bride, over and over…and still it stands strong.
This is a link Phylor’s Playlist Playground. (I’ll add a link to the rest of the carnival when it comes out on the 7th. Be sure to check back at Phylor’s blog for a list of other’s who posted a playlist.)
Picnic with Ants 