My life disABLED with Chronic Ilnnesses, it just IS. Taking one moment at a time.
Author: Wendy
I'm taking a journey learning to live a mindful and happy life, while living with Chronic Illnesses.
I'm a bit of an idealist. I want everyone to be happy and think everyone should want the same for others. I don’t understand mean people. I cry easily and laugh often. I love cartoons, Dr. Who, and my wonderful husband...not in that order!
Mindfulness practice has helped me get through some of the roughest patches of my life. I haven’t been practicing as much as I want and would like to resume, I thought a good way to start would be to post a few of my favorite quotes on mindfulness. I hope you enjoy them too. (all photos were taken either by me or Stuart)
“Mindfulness is simply being aware of what is happening right now without wishing it were different;
enjoying the pleasant without holding on when it changes (which it will);
being with the unpleasant without fearing it will always be this way (which it won’t).” ~James Baraz
“In the end, just three things matter:
How well we have lived.
How well we have loved.
How well we have learned to let go” ~Jack Kornfield
“Be kind whenever possible. It is always possible.” ~Dalai Lama
“Realize that this very body, with its aches and its pleasures,
is exactly what we need to be fully human, fully awake, fully alive.” – Pema Chodron
“If you want others to be happy, practice compassion.
If you want to be happy, practice compassion.” ~Dalai Lama
“Be happy in the moment, that’s enough.
Each moment is all we need, not more.” ~ Mother Teresa
** One reason I haven’t been keeping up my mindfulness practice like I used to is that the depression side of my Bipolar Disorder has been taking over my desire to do many things. I started seeing a new psychiatrist on Monday. It was a very in-depth appointment. I took a lot of psychiatric tests before I saw him. They mainly showed that I have a bit of a hard time concentrating. Two of them weren’t really fair because they are exactly like a “game” on Luminostity that I play a lot, if I hadn’t been playing that for a while I would never have been able to do as well on those tests. We discussed my past treatments, what’s going on, all kinds of stuff. He is adjusting some of my medications, and referring me to a therapist he thinks would be good for me to see. I will go back in a month. I’m feeling better just knowing that I am much more comfortable with my care provider and think this is a very positive move.
Left – Terry, my sister, Middle – My Pop, Right – Wendy, me
I don’t talk about my family often, other than hubby and the furry babies. But there is something on my mind, something that may explain part of sadness.
My father had liver cancer in 2013, he went through treatment (chemoembolization) and they got it. It was a much easier way to treat cancer than anything I’ve ever seen. He has been doing well since then….
Until his check up in December, well even then they didn’t think anything was seriously wrong. When he had his initial cancer he had a large tumor that they got rid of, and he had a tiny little tumor that they left alone, but they have watched. It hadn’t grown at all then at his December check up, it was an itsy bitsy bit bigger, so they decided to go in and do Radiofrequency ablation (RFA) and get rid of it. They did this the near the end of January. During that procedure the doctor found more 2 tumors.
This was supposed to be an in and out no big deal procedure, but it took my father a while to recover from it. Last Monday he had the chemoembolization again on the remaining tumors, this procedure is less hard on him. Now this coming Monday he will have RFA again on both of the tumors.
My father is 82 years old. This is really hard on him. It’s also really hard on my sister. She is taking care of him. She was taking care of him after his first surgery when I was put in the hospital for having seizures. She was so worried about me she got my uncle to come stay with my father and came to help me, then she turned around and went right back to care for my father again. For over a month now she has had no life of her own, she has only been taking care of others, and I don’t know how much longer she will have to do this. She is normally very involved in her grandchildren’s lives, I know this has to be hard on all of them.
I haven’t been able to go see my father.
I can’t help either of them.
I can’t help but think….what if…
and I can’t help but feel worried, sad, and guilty.
When you have times when you can’t help others who you love, how do you handle it?
I shouldn’t feel guilty for being sick, but at times like this, I do. Well, I feel guilty that my sister has to shoulder all of this on by herself. I feel guilty that I can’t even be there to hold my father’s hand. And I feel guilty that I felt better today than I have since I can remember.
After days of having vertigo constantly, yes I had 2 days of rotational vertigo that went on every single second, I woke up feeling amazing today.
I had a really good day…..it’s hard when I think about what my family is going through.
As you look around the chronic illness community you will often find that we use creativity as a coping mechanism. There is science to back up our intuition that creativity is a good thing for us.
This quote comes from a much larger article on this subject I found on CNN’s site. I thought it extremely interesting, perhaps you will too. This is Your Brain On Crafting.
Today I thought I’d share with you some things I’ve been doing recently to spark my creativity. I received a tablet for Christmas, it comes with a stylus so I can draw right on the screen. I love it. It’s hard when I have very little space, and I often have to stop working very quickly to bring out a lot of art supplies, so learning how to create art on the computer has been wonderful. I’ve been using an app called Sketchbook. They post challenges that you can take on if you like. This has been perfect for me. I have had a very hard time creating art in the past year, deciding on what to do has been too hard. The challenges give me a focus. It’s like having an assignment back in school. I get so involved in these projects that times goes by without me noticing.
If you would like to see the photos larger just click on one and you can see a slide show that will show them in a larger size.
The assignments were:
Upper left – Biggest Fear – Title “The Monster Within”
Top Right – Female Human Animal Hybrid – “Butterfly Woman”
Middle Right – Modern Mythical Creature – Loch Ness Monster “Nessie”
Bottom Left – Person I’d most like to meet – “Siddhārtha Gautama” (Buddha)
Middle Bottom – Abstract Tree
Bottom Right – Dream Home
Do you have a creative outlet? You don’t stress thinking you are good at it or not, just do something. No one else ever has to see it. Coloring books are really popular right now, this is a great way to get your creative juices flowing. Is there something you have always wanted to try? Photography? Learning how to crochet? Knit? Cook? Stamping? Paper Crafts? Jewelry? Poetry? Writing? So much to try, so little time!!
After decades of research by Professor Mihaly Csikszentmihalyi he found getting involved in something creative produces the same effects as meditation. Something he calls flow.
If you’ve been reading my blog for long, you know I’m very into mindfulness and the benefits of it and meditation. So learning this made me very happy, especially since I just haven’t been able to meditate recently.
(shh, I’ll share a little secret with you, I’ve been really depressed for a long time now. The antidepressants I’m on simply aren’t working. Things need to change. I’ve had a psychiatric nurse practitioner here who writes my prescriptions, but she isn’t very good at working with me since things have changed. I’m bipolar, I’m having a severe mood change, I need help. So I’m searching for someone I can really work with, and I think it’s time for me to go back into therapy. I’m working on it, but it is taking a bit of time. While I’m finding the right doctor and therapist that click with me, I’ll be trying to do as much work as I can to help myself. Including, being a lot more creative. I plan to post much more about my days, to see just how I’m doing, the good days, the bad days, and all the days in between. I hope you will join me on this journey. I might even post more of my challenges.)
Recently someone told me, not in these exact words, that they understood I have been though a lot and lost a lot, but I needed to stop pitying myself, I needed to move on. I don’t feel like I pity myself, but this hit me hard.
I’ve never said “Why me?”, I’ve always thought, “Why not me?”. However, I have had a lot of losses, and sometimes it gets to me. There are things I miss. Does that mean I sit around feeling sorry for myself because I can no longer do them….most of the time No….ummm….sometimes..maybe. Most of the time I’ve come to terms with it, and I’m happy with my life as it is….other times, the grief comes back in a wave that I just can’t control. I’ve heard the same thing from other people who have chronic illnesses.
I have now read many studies, articles, and books that talk about this, and I found this is normal. (You can refer to the list at the end of the post for some of the material I read, if you want to check it out.)
Often we are handling our situation well, we have accepted the things we’ve lost….then suddenly the grief will hit us again. Something may happen to spark it. It could be you were feeling good and suddenly you are having a flare – now you feel horrible again, you just got a new diagnosis to add to your list, a medication you were on stopped working, there is an event that you can’t attend that means so very much to you, you tried to clean the tub and couldn’t….something happens…. Grief comes in waves, it doesn’t end just because you have been dealing with a situation for a long time. Our grief is discounted. People do not understand how we must grieve about the things we have lost, and how these losses continue to build up. Or how much we still miss this huge thing we lost. We cant hold this inside, it is not healthy.
When a person loses a loved one, they are expected to grieve. We often think there is something wrong with them if they don’t. We aren’t surprised when years later they still miss the person and sometimes need to cry. Everyone thinks this is normal. The chronically ill often lose huge portions of their life. The life they were living is suddenly taken away, changed forever. We aren’t just sick, but we often lose many things we loved to do, often our jobs, many friends, and a lot of our independence. We’ve lost all of this, but we are expected to bounce back, find a new life, forget what we had. I’m not saying we should sit around and feel sorry for ourselves all the time, but we need to grieve. We may have started a new life, we may be happy, but that doesn’t mean that we don’t have moments when we really miss what we lost.
I recently started having seizures. This means, at least for a while, I am losing even more of my independence. My husband is now working from home all but 2 hours a week, and for those 2 hours we are going to have someone come and stay with me. Now I can’t just make sure someone is in the house when I take a bath in case I start to have vertigo, I need to have someone in the room! This brought on a huge wave of grief. It brought back everything I lost. So much sadness, and it brought a lot of anger with it too. Of course, that is a stage of grief. I’m beginning to get a grasp on things, but I will need some time yet to grieve. I realized I haven’t really let myself grieve about a lot of my loses, I was so busy trying to be strong.
There is really only a couple of things I long for all the time and those are things that cause me to feel guilt. Guilt also has a lot to do about letting go of loss. There are some losses we hang on to because we feel so guilty we can’t do these things any more, this isn’t healthy. We shouldn’t feel guilty, we are sick. We can’t help that we can’t do things…but we still feel guilty. Many of us feel guilty we can’t work. We feel guilty we can’t do things with our families. Personally, I feel a huge amount of guilt because I can’t cook. Hubby does so much, he is spread so thin, and he hates to cook. I have a restricted diet, that makes things even more difficult, I feel so guilty that he has to cook, especially when I loved to do it….but I can’t. It’s too dangerous. It breaks my heart every time he has to cook dinner. I know how much he dreads doing it, and how hard it is for him. (but he really has become a pretty good cook)
Sometimes we are completely irrational for a while when we are grieving. For example, I can get so angry with people, I feel so many people abandoned me. I get so worked up about it and just want to scream. If someone who normally gets in touch with me hasn’t, I will think they too have abandoned me, and will build up these huge things in my head….then they will get in touch and I’ll say, they did it just because they felt obligated. Then, it will pass and I will realize my friend who got in touch, loves me and simply had things going on, besides I could have reached out to her. Thanks to mindfulness practice, and Toni Bernhard’s book How To Live Well, with Chronic Pain and Illness, I know that it hurt when people disappeared from my life because they didn’t react to my illness the way I expected them to, not because of what they did. It’s my expectations that cause the pain. I don’t know the circumstances, and frankly at this point, it doesn’t matter. But sometimes, something will happen that will bring back that pain. And I will forget that it’s from my expectations and I just get mad as hell. ….. And my dear husband hears all about it….then I calm down and let it go and I’m okay again.
The biggest point I’m trying to make it is, it’s okay to have a pity party, as long as it doesn’t last all the time. It’s okay to grieve what you have lost, over and over again, it’s natural. It’s okay to have a few things you will always long for….that doesn’t mean you are obsessed with it, it means it was very important to you and you just miss it.
Remember, if you lost a loved one, you would always miss them. People do not think this is unusual, they do not think this is something we should completely get over. We lost huge parts of our lives, why are we expected to not miss it?
I highly recommend Toni Bernhard ‘s latest book, How To Live Well, with Chronic Pain and Illness. In it she talks a little about this…check the chapter 35. It helped give me a way to deal with chronic illness. It gave me a lot to think about. Different ways to think about things, how to talk to people about my illness…. and well…I think you will get a lot out of it. Her first book How To Be Sick, I read over and over…. and I think this book is even better.
I got home from the hospital on Sunday afternoon. I just read the post I wrote while in the hospital. I’m so sorry, I had no idea that it was like that. I would have let you know I’m alive before now! You should have seen the status I put on Facebook! It completely blows my mind that at the time I read these things after I wrote them and thought they said what I meant to write. Yep…*Swoosh* MIND BLOWN!!
Here’s what has happened….I’ll refresh your memory from the last post, as if you could understand it.
I’ve been having these little muscle twitchy things. Sometimes just minor, sometimes more pronounced, it always happened on the right side and it coincided with long days of vertigo, or migraines. When I was exhausted, stressed…ect. On Wednesday it happened without these being present. It happened 3 times at home each time getting worse. We decided to go to the ER. As soon as I walked ….wobbled…in to the ER, it happened again. The first thing they did was have me pee in a cup (check my electrolytes), and then a CT scan. The CT technician was great. When it was over he stepped in the office to do the paperwork and it started, I remember thinking, “Where is he”…and then I screamed when the elevator hit the bottom floor and I was in motion…and scared, really scared, and crying…I didn’t know why I was but I couldn’t help it. The CT tech was leaning over me, telling me I was OK, that I was in the hospital, we were going back to the ER, and he just kept saying that. That was the first of many for days….some better, some worse.
At first they put me in a normal room, it was just to be for a little bit, until they could get me on the 5th floor, it has cameras, they wanted to observe me all the time….seizure watch. But there was no room on the 5th floor, so I was put in ICU. I could not be left alone….or far from help. Stuart was there, but he had to go home to take care of our pets, and gosh he does have to sleep. Luckily, my sister came soon and helped, thank goodness.
While I was in the ICU I had a 24 hour EEG, actually it only lasted about 15 hours because I had more than 6 seizures during that time so they didn’t need the whole time. It came back clear. I was sent to a regular room.
The doctor came in and told me that I am having non epileptic seizures. He said they had a theory… At that moment, I had a seizure. He told my husband that, no, what he was thinking would not cause anything like that. He was thinking something much less violent. There are theories, but I don’t even know right now. I will be seeing my neurologist today. I see my PCP next week. We’ll see.
Since I’ve been home the seizures have calmed down. They aren’t as intense. I don’t know if it will stay that way.
Strange thing, while I’ve been having the intense seizures I did not have vertigo. I would have small little swirls, that lasted just seconds, but that’s all. Yesterday when I had severe rotational vertigo for hours. I didn’t have a seizure until it was over for a while.
But I was in the hospital from Wednesday night to Sunday afternoon without having any real vertigo? Don’t get me wrong, I don’t want seizures instead. I just think it’s weird. Now that I’ve said that, oh lordy please don’t let me have both at the same time!
I think I’ve told you all I know for now.
So far…another mystery in this crazy world of mine.
I’ll talk more about this soon….but….I’m having a Pity Party, and I’m not ashamed to say it!
I hope this makes a bit more sense….I’m really too tired to proof read it, not like it did much good the last time. 🙂
For the pat couple of weeks I’ve been having the intense muscle spasms on my right side. They have always accord during during times of vertigo, or extreme opsilopsia. I thought it was connected ti the axity brought on by the to things. Until, last nighy. I wasn’t really having much vertigo and the shocking w
Got much, much wore, i had 2 attacks at home, and 4 in the hospital…so far, es getting progressively worse.
Yes they are Salling it seizures. Focal seizures.
My bight thought.
WHAT THE HELL IS HAPPENING TO ME?
of course it couldn’t be easy, they did the normal chekup, ran labs, a CT scan…all negative. I’ve ever had an EEG….measuring my brain waves….ohhhh…oh course I did not have an attack during the attach so it won’t so anything. I haven’t seen the nerologist yet, but the doc on call thinks they will order a 24hr EEG, a CT scan with contrast, and if the don’t find anything they may have to take my cochlear implant out so I can grt an MRI, they Don’t want to miss anything
4my dizzion id dlutturf andim seerinevmoupopp liy ui
Eitj
JtwexriyiýýyyyWh
I m chronicscolllillonically ill get sicker it can cause a huge mess, above and be young the message we already live in.
People who have stuck around star o driwndle. I never expected this from my main group on friends, but I took a long time for me to get t place we’re I could sosialize, and still I can do what I used to….there has to be compromomise, as Denise pointed out in her ltouchig post Cowlick. (Denise writes a great blog about living with Meniere’s, having hearing loss, living with the joys and challenges of having a sevice dog..she is a wonderful advocate and I find her bog to be filled with a plethora of information….now jump on over there, you will love the store behind the title Hearing Elmo warning…she doesn’t pull puches, she will let you know what’s going on. I admire her….yes Denise, I still admire you, pity party aside, I’m only diappointed to did invite me! I could have brought a big bottle of a Whine,
ight no i hv to ttk r o my darling hudand, anfg I oftntitreless husdane, and exhausted agvust0p0oeaw hep if you San
I’m no brdeudr mydself trighy noŕ…..my ftrhrtenreenrdmr snf i vany vco, cnbi mun somo0nhypuy0mu7had made inetrubytioncn u
Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet. My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.
When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.
Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed. I’ve never had anyone be so aware of my condition and so understanding. No one.
He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough. Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.
I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test. I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative. He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV. He really listened and payed attention. He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful. I get a tiny bit now and then, but it doesn’t wake me up. Happy Dance!
There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t! He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”. Out loud I broke into tears and said, “I don’t do the dark.” I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.
My anxiety is so high. That is so not a good thing. Anxiety can cause vertigo. Vertigo causes anxiety. There’s a bit of a Catch 22 there isn’t it? I have noticed I do not like it when someone says that I’m anxious. (Yep, he said that) I get defensive. I want to scream, “If you had this would you not react like I am?” I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could. I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard. (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)
It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before. That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time. *scrunchy face*
He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.
My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.
I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day. I even fell down, I’ve only fallen once since my hip replacement until now. (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down. I’ve found that to be pretty safe.)
I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.
I go back on Thursday, yep tomorrow, we’ll see how it goes.
He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard. Ryan said that he would give me plenty of homework!
He walked in the room with his too big smile, shook my hand and told me something about the test…that didn’t make a lot of sense. He said that it showed that I had reduced cochlea function in both ears. That at my age he would expect it to be a 21, but my right ear is a 4 and my left is a 13. I asked…”What does this mean?” He said that it meant that my cochlea wasn’t working as it should in my ears…well duh. I repeated, “Yes, but what does that cause?” “It means you have vertigo. And you might have this thing called Meniere’s”
WHAT?? I MIGHT HAVE WHAT? DO YOU KNOW WHO I AM? YOU DON’T REMEMBER ME? YOU DIDN’T LOOK AT MY CHART BEFORE YOU CAME IN THE ROOM?
Okay, another reason that whole thing was weird….cochlea function refers to hearing. My cochlea is not going to show up working on any test, I have cochlear implants, I have a device in my head that is coiled around my cochlea that vibrates so I can hear. It doesn’t work on it’s own. And the tests I were given doesn’t even test that. But the numbers he gave me do correspond to the main test that I was given. That was just so weird.
He also talked about a hearing test I had last February, I told him I didn’t have a hearing test last year. He argued with me and pointed to the computer and said, that it said the tests showed my right ear had severe to profound hearing loss. I looked at him and took off my Cochlear Implants and showed him and said, “I have Cochlear Implants, why would I get a hearing test? However, I do have some residual hearing in my right ear, but…” and he interrupted me and said….”That’s impossible, if you have Cochlear Implants, you can’t have any hearing…blah, blah.” Stuart tried to explain to him that with the newest CI’s you often keep any hearing you had…he still argued. Dang-it, I think I know if I can hear or not! When I told him that I wouldn’t need a hearing test I saw the nurse point out to him that the date on the hearing test was not from 2015. It was 2014, shortly after my CI surgery….of course he didn’t put that together, that I can hear out of my right ear, a little bit. And he did not admit to us that he got the date wrong. It’s also very sad that the audiologist that gave me the test knew that the new CI’s are often allowing people to keep some of their residual hearing, she was not surprised that I can hear a little out of my right ear. (I want to explain, I can only hear a certain frequency, I can’t hear much. For example, I was sleeping through the fire alarm at the hotel in December, yet Stuart said it was hurting his ears. So it isn’t much hearing, but there is some there.)
Finally, I got tired of dealing with him. I asked him a couple of questions, which I don’t really trust the answers to now, then I said, “So the plan is, I start Vestibular Rehab, I keep working with my migraine doc to get the migraines under control, keep up the low sodium diet, and taking the Valium twice a day. After I go through the Vestibular rehab we will talk about the gentimiacin injections. That’s the plan.” Then I stuck out my hand to shake his. In my mind he was dismissed. He just had that plastered on smile like he had the whole time, and shook my hand and said, “That’s the plan.”
I saw no reason to spend any more time with that man. It was obvious he did not review my chart before he came in the room. I do not understand how he could not remember me. He told me when I saw him last time that I am the most advanced case he has seen, and how many other patients do you think he has that have been to Duke and John Hopkins? Plus, Stuart and me together are pretty darn memorable. I have NEVER had a doctor make me feel like they didn’t remember me. I “might have this thing called Meniere’s”…geez…are you kidding me? He said a number of other things that just didn’t make sense…like, “I thought you had gentimiacin and it didn’t work.” He just said that I might have Meniere’s and then he said he thought I had gentimiacin injections? dodododo
About the tests….well he only gave me the numbers for the biggest test they did. The Caloric Stimulation Test. (click on the link if you want to learn about the test) This is used to for damage to the acoustic nerve (hearing and balance) and it test the brain stem. It is the only test that test the ears separately. The numbers he gave me fit right in on this test. 21 is normal. He kind of dismissed the 13, I really didn’t understand that. Of course, the one that is really out of wack is the right ear coming in at only a 4. So, I’m thinking when we get to the point of killing off the balance center we will do the right ear first and see if it straightens things out, or makes it so much better I don’t feel I have to do the left.
Now for the big decision, what do I do about this doctor? I really don’t trust him enough now to let him give me a shot in my ear that will kill my balance center. Heck I don’t trust him enough to give me a B-12 shot.
What do I do? I can’t find another ear doctor in this whole city that knows anything about Meniere’s except for the other guy I went to who thinks he is a god. He doesn’t listen to his patients…at least not to me, and according to his ratings on-line and on Angie’s list, he doesn’t listen to most people…he didn’t believe I have vertigo as often as I do. Really? Does he think I use a walker just for fun? Ugh…..I hear stories like this from so many people with chronic illnesses, we have such a hard time finding doctors who are compassionate. I’m lucky, most of my doctors are wonderful, but I’m having a heck of a time finding a good ear doctor since we moved.
I found an ear clinic I would like to go and check out that is close to 2 hours away from here. I have a list of questions for Stuart to ask them on the phone before I even think about making an appointment. If they treat people like it appears they do on their website, I think this would be a very good place to go. They are very well versed in advanced Meniere’s, and they aren’t afraid to treat it.
As you can see, I do believe in being an advocate for myself, but I know when I can’t burn my bridges just yet. I’m also not afraid to fire an incompetent doctor and as soon as I find a new one, I promise this doctor will know why he is being fired and I will write a review on him letting others know what I think. The group does have a good support staff, too bad he is the only one in that group that (supposedly) knows anything about Meniere’s.
It seems appropriate that I’m writing this on the eve of a new year, what better time to look toward the future?
For me, contemplating the future is more than a little scary…. let’s just say my anxiety about it has been more than I ever thought was possible.
After my illnesses changed my life, I learned about Mindfulness Based Stress Reduction (MBSR), it struck me how it has helped many people in many aspects of life, but mostly I was struck by how much it often helped people who are ill. I had already learned of mindfulness during my studies in Buddhism, and while practicing yoga, but I admit I didn’t practice it regularly.
Over the last few years I’ve learned more and more about mindfulness, as I continued to studied Buddhism and MBSR, I’ve worked hard to live my life in the moment. I don’t dwell in the past, (all of that is gone)…. I don’t worry about the future, (that hasn’t been written yet)…I try hard to live in this very moment, because that is all we truly have.
Yes, at times I still have moments when I get upset that I can’t do what I used to, and get upset about what might happen…but I don’t dwell on it.
Then we started making plans… how we are going to try to make things better for me….decisions about this unknown future, decisions that I have to make. Suddenly, I HAVE to look at the future. I HAVE to think about it. And it really scares me. Suddenly, I’m scared about being like this forever. I thought I had accepted that and was okay with it. Not that I was giving up, just that I accepted things if they didn’t change. At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change. Now, I suddenly have options….plans. I am having a very hard time not being anxious about the future. I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back? The main thing I know is that, I don’t want to lose myself in this quest to get better. I don’t want to be afraid. If I don’t get better, I need to know that’s not the end of the world. I don’t want to start having to accept all of this all over again.
Each day I have begun to get more and more upset about things I simply can’t do. As usual, most days all I can do is go from the bed to the chair in the living room. But I tried hard not to let this get to me before. I tried hard to make the most out of every moment…no matter what. I’m trying now….but I am not doing as well as I have been. Then I hear the voice in my head….Be Gentle With Yourself. and I Breathe. I am doing the best I can. Yes, I’m a bit overwhelmed right now. Everything is changing, all of a sudden, it’s going to take me a minute to keep up with it….deep breath….and I must remember, it still has to happen one moment at a time.
Okay, let’s move on from this and let’s talk about what the plan for my future is right now.
I was going to write a post right after my visit with the new ear doctor here in town, but I decided to wait until after the tests and the results. I was supposed to get those yesterday, but I had to reschedule my appointment, guess who was too sick to go? Surprised? I’m not….I have cancelled so many appointments because of vertigo, you just can’t imagine.
So, I’ll give you a break down of what is going on as of now…..
I saw the new ear doctor here. So far he seems pretty good, I was impressed with his knowledge about Meniere’s, and he is very willing to work with the doctor from John Hopkins. He suggested I start taking a low dose of Valium twice a day to try to keep my vestibular system calm. He wants me to keep track of how much Sodium I’m eating. (Okay, I laughed at that. I know I don’t intake much sodium but since I haven’t been keeping a record he was not convinced. I have been eating a low sodium diet for years, I know how much sodium is in almost everything, I don’t eat processed foods, and if I eat out I order everything without seasoning….yes I know that is boring, but it is safe with all of my food issues. So I tracked my food since I saw him, I admit I was curious too, the results? I normally consume just under 1000mg a day, I haven’t been over 15o0mg in any given day. They say a low sodium diet is 2000mg a day. I don’t think I have a problem there.) I’m starting vestibular therapy on January 12th, we’re going to start training my eyes and body to balance without my ears. I am to continue working with my headache specialist to get my migraines under control. We will talk more about killing off the balance center after doing all of this and seeing if it helps. Also after seeing the results of the vestibular testing I went through, we want to see if one of my ears is close to being dead already, if so we may go ahead and kill that one off, it may be causing much more trouble than the other.
(just let me say, I’ve been through these tests before and it wasn’t so very bad the first time, this time, it was absolute torture. I cried. I am not that kind of person. If my husband hadn’t been back there with me, I don’t know how I would have gotten through it. The person giving the tests told my husband she thought I was suppressing, because some things that should bother everyone I was not showing too much of a response on. I thought that was strange. I didn’t feel like I was suppressing, but after I’ve been going through this for so long, I’m sure I automatically try to not have vertigo when it is coming on. I didn’t throw up, I almost did, I had cramps like dry heaves were coming, but no vomit. Yay! it really takes a lot to make me throw up now. I rarely throw up during an attack now. I get really nauseous, but I rarely throw up. I always thought it was the meds. Heck it’s already ruined my teeth and caused burns in my esophagus, I’m very happy it stopped. Anyway….I’m very interested to find out the results of the tests, and upset I didn’t get to go yesterday.)
He does think my Meniere’s is definitely autoimmune. Not that I want an autoimmune disease, but it does explain a lot. Most of my doctors have felt I have symptoms that lead to one, but haven’t been able to put their finger on it. I just have so much going on, and everything gets worse with stress, and gets better with steroids. I often run a fever and no one can find a reason. I have a marker for an auto-immune disease, but the one I have a marker for I do not test positive for….however, that is a red flag that I could have another. They believe they simply do not have a test for the autoimmune disease I have, or I don’t test positive for it. Like a friend of mine, has rheumatoid arthritis, but he always tests negative for it. It is visible on all scans and he responds to treatment, but the test for it comes back negative. So, in other words, we can’t prove it, but it is thought that it is an autoimmune disease, at least in my case.
So, there is the plan for now. I don’t know what will happen. How it will change. Or anything right now.
I feel that there will be a lot of change around the corner.
The future is scary, but it holds promise, and hope…..something I haven’t had in a long time.
A couple of months ago I applied to be seen at the vestibular clinic at John Hopkins Hospital. My records were sent, and an appointment was set up for December 27th, then it was moved up to December 11th. I must say, that was just fine with me.
I was scheduled to have a hearing test, and an Electonystagmography (ENG) test before seeing the doctor, but the doctor had to leave at 2pm (before my original appointment time) so he wouldn’t see the test before he left, so we asked if I could take the test at home. You see, I had to stop any medication that might help with vertigo attacks before the Electonystagmography (ENG) test, if I didn’t have to stop these medications while out-of-town, I sure didn’t want to. They said no problem, and I sure was glad. I spent all of Thursday with vertigo, it was slow but it was there, I can’t imagine what it would have been like if I hadn’t been able to take my meds. I also had an attack right before my appointment on Friday. I had very little balance when I saw the doctor and my vision still wasn’t clear. So he saw me when I was not doing well. I think that’s a good thing. How many times have you been to the doctor and all of your symptoms just magically disappear right when you get there? That is so frustrating.
When we walked into the Outpatient Clinic it was like walking into an airport. You checked into the front desk, we both got arm bands to prove we belonged there. There were all kinds of signs and lines and directions, it was a bit to take in all at once. Stuart said we were told where the elevators were (no I couldn’t hear much in there) and off we went. When we got where we were supposed to be, I was very impressed that the check in and out areas were looped. If you don’t have hearing aids of CI’s you won’t understand that. If your hearing aid or CI has a telecoil setting, then the hearing loop provides a magnetic, wireless signal that is picked up by the hearing aid or CI when it is set to ‘T’ (Telecoil) setting, and the person using that setting can hear the voice right in their ear, no background noise or anything…it is really cool. So, we checked in and were told to go to the little waiting room in the back….that’s when it started to look like just a normal hospital setting. The little waiting room, wasn’t all that little, but it wasn’t all that big either. We were early, because I HATE to be late. My first appointment was to get a hearing test…(snicker). But soon a very soft spoken woman came out and said the doctor wanted to see me first, at least that is what Stuart told me she said, I had no idea. She took my vitals, she asked for my weight and height…I got it mixed up as to which one she asked for first, because I couldn’t hear her and I was guessing. Soon the doctor came in…..
We talked a bit about my history and he gave me some tests while in his office. A bit of touching my finger to my nose and then to his hand, turning my hand over and over….ect. Some I could do okay, some I had trouble with. Then he said he was sorry but needed to shake my head a bit. I did not do well with that one. I had to look at his nose while he shook my head. One time when he shook my head Stuart said he saw my eyes jerk, he said it was “kinda freaky”. The doctor asked me to stand up and I staggered a bit, he said never mind, sit down, be careful. I guess that answered that test.
He then said he wanted me to have the hearing test and come back in to see him. So I went out. I still thought it was kind of funny getting a hearing test because I’m deaf. I can hear a tiny bit in my right ear, but it is so little you may as well say, I can’t hear anything. Soon the doctor comes to the waiting room and said, the Audiologist said that since I have cochlear implants she couldn’t give me a hearing test. Yes, I kind of giggled inside. Stuart told them over on the phone that I had CI’s and a hearing test was kind of unnecessary, but they said it was ordered. Then the doctor said they could do the ENG test that I was originally scheduled for now, so he could see it. Well, I had just taken meds to help me, since I was really sick after the test he performed. I told him, that and how it said I wasn’t supposed to take any meds for like that for 48 hours before the test, and I’d already taken it twice that day. He agreed the test might not be accurate under those circumstances. Oops, kinda wish I hadn’t taken my meds, but then again, I really don’t want to be so far from home when I have that test done. I just know I’m going to be sick.
The ENG will show how much vestibular function I have left in each ear. That’s pretty important right now…..because here’s what he thinks and the plan……
He said, it is obvious I have damaged vestibular function, it is just a question of how much, and how much in each ear. He said he believes that, yes I have Meniere’s Disease, and Vestibular Migraines, and he said I have balance issues caused from getting my Cochlear Implants. I noticed before, my vertigo got worse after getting my CI’s, but no one ever said that they could have caused some of it.
He said we have to treat these in different ways. One is to get my migraines under control. He likes that I’m seeing a Neurologist that specializes in headaches, so I’ll continue to see her and try to get the migraines more under control. If we can’t do this, I may be taking another trip to John Hopkins to the Headache Clinic for evaluation. The next thing he said was, I need to have vestibular rehabilitation to train my body and brain to balance without my ears. He also said, we need to kill my balance system in my ears. We plan on doing this with gentamicin shots in both ears. How much I need to have depends on the results of the test, one ear may already be dead, who knows…we just don’t know how damaged they are yet.
I will be seeing a new otolaryngolgist here in Charlotte on Wednesday, the 16th, and we will discuss all of this, and set up getting the test that the doctor at John Hopkins wants. They will confer with each other on a treatment plan. I guess, It will also be good getting a 3rd opinion. The one from my doctor at Duke, the one from John Hopkins, and now let’s see what this doctor thinks. This doctor knows I have been to John Hopkins and they will be conferring with each other.
There are a few questions I forgot to ask. I know many of you are thinking….”You should have written them down.” I did, really, I did. But I wrote it on the paperwork they gave me, and I gave it to them…I didn’t have it after that….duh. So I’m going to ask the new doctor. It’s only a couple of things. Nothing that would really change the plan I think. I just want to know if they think my Meniere’s could be autoimmune, since it reacts so well when I am on steroids; and I’d like to know if they can answer why when I breathe in through my mouth, or drink anything cold or hot I feel it in my right ear. That’s just weird.
I know I forgot to ask him these things because he was telling me things that had been thinking for a long time. I actually asked for this treatment from my doctor. But he wouldn’t do it. He said it was too destructive and I could be so disabled I wouldn’t be able to do anything….ect. The doctor at John Hopkins looked at me and said, “more disabled than you are now?” He then asked if I had been given vestibular rehabilitation, and we told him no, that I asked for it, but my doctor had said that things fluctuated so much he didn’t think it would help. He frowned, and said, he thought I could benefit a lot from vestibular rehab….so as I said before, we plan to do that first. I went into the appointment with no expectations. Actually, I expected them to tell me there was nothing they could do. I had no real hope. I told the doctor this, he said….No, don’t give up hope. I explained, if I came in there thinking he was going to fix me and then he couldn’t do anything I would have fallen apart, if I came in there with no expectations, I would be thrilled if he could do anything. He liked that. We talked a bit more, and he insured me he would consult with my doctor here and answer any questions, and if I came back up there he would be happy to see me. Then when I left he shook my hand and told me that it was a true honor to meet me. That shocked me. I told him it was so very good to meet him and thanked him profusely. and went on my way.
A little about the trip itself…….The trip up to John Hopkins was pretty uneventful. We stopped by Duke to pick up films that I’ve had done….you know, MRI’s, and such. When we went through Washington, I saw the White House, the Jefferson Memorial and the National Monument in the distance. I’ve been to Washington before and have seen those things up close, but it is still kind of magical to me. I don’t know why. Driving into Baltimore, it seemed so BIG. The GPS told us to go straight when we should have gone to the right to get to our hotel and we ended up in a very sad part of town. The buildings were mostly boarded up, yet there were a few businesses here and there. I can’t imagine how they would ever do any business. One place we passed there were a lot of nice cars parked on the road, and one burnt out car right in the middle of them. Soon we made it back to our hotel. It was just a very sad detour.
On Wednesday night…well I guess it was Thursday morning…Stuart shook me awake at 5am. I thought, we don’t have to be anywhere, why is he waking me up. I read his lips… FIRE! I was awake then!! He pointed to the alarm. The Fire Alarm was going off. I jumped up and put on enough to get out of the hotel…it was very hard for me to go down 3 flights of stairs!! We were all out on the street and almost immediately there were 2 fire trucks on the scene. No fire. I never found out what happened. I could not climb back up those stairs, and it took a while for them to turn the elevator back on so we had a bit of a wait. That was fine with me. I was very impressed that the fire department got there so fast. The scariest part for me, if Stuart had not been in the room I never would have known there was a fire alarm going off. I would have slept right through it.
Well, we had an adventure! I told Stuart when we got back to the room, that with all this stress, I still hadn’t had a vertigo attack…that was amazing….so, we were moving to Baltimore. But I spoke too soon. Of course, I woke up with one the next day….and it lasted all day….but I spoke about that earlier in this post.
I was a bit disappointed that we didn’t get to do anything while we were there. The one day I felt good, we wasted because 2 of my shirts didn’t get packed so I didn’t have enough clothes. Curses. The next day if I had felt well, we were going to do something. We planned to go to the Aquarium, it wasn’t far from where we were staying. However, of all the sites in Baltimore that there are to see…..after all it is home to one of my favorite poets, Edgar Allen Poe…I really wanted to see Charm City Cakes. Yes, I wanted to go see a Bakery! I didn’t even care if I went inside, I just wanted to see the building. It is the bakery from the show Ace of Cakes….that isn’t on any more.
Duff Goldman – photo courtesy of Food Network
Duff Goldman started it..still owns it, has a second one in LA now. He is often on the Food Network. They do spectacular work, and I was just a huge fan of that show, and I just love Duff. I could just eat him up. I love the story behind his life, and I love his personality. I regret that we didn’t at least drive by Charm City Cakes. Yes, I am a goof. I was sick, had a migraine, couldn’t focus worth a toot, had about 8 hours on the road ahead of me…and I regret that I didn’t stop by and see a bakery. But hey, what is life without the little things?
is forever. I thought I had accepted that and was okay with it. Not that I was giving up, just that I accepted things if they didn’t change. At least that’s what I thought, but actually, I thought I was going to be like this forever, I had come to terms with it, and now, that may change. Now, I suddenly have options….plans. I am having a very hard time not being anxious about the future. I’m even thinking about things from the past. I keep thinking about all that I can’t do now, and how much my life has changed, and I keep wondering, could I get some of that back? The main thing I know is that, I don’t want to lose myself in this quest to get better. I don’t want to be afraid. If I don’t get better, I need to know that’s not the end of the world. I don’t want to start having to accept all of this all over again.
Picnic with Ants 