I’m leaving Saturday for the Diamond Headache Clinic in Chicago. They are very well known for helping headache patients who are complicated. I had a virtual appointment with Dr. Merle Diamond, she is the daughter of the founder. She was very encouraging. She said we’ll start with a cocktail infusion and if that doesn’t work, she will try something else. I have no idea when I’ll be home. The average stay is 7-10 days, it could be a little less, or more.
When I had my virtual visit with Dr. Diamond she asked when I wanted to come and I said “as soon as possible”, expecting to have to wait for a long time, she said “how about tomorrow?”. Oh my! She really wanted to get me in there fast to get started helping. Unfortunately, I couldn’t go immediately, I have some other appointments that I had to take care of before leaving. Like getting more trigger point injections, I sure don’t want to have the severe nerve pain while I’m there.
They do much more than just medication treatments, I’ll also be working on mindfulness relaxation, nutrition (I have to eat a low tyramine diet while there, and can have no outside food), and other modalities if they think it’s necessary. For example they also do physical therapy, massage…ect.
One more thing, Stuart gets to stay with me. They have the room set up for a companion. So we don’t even have to pay for a hotel room. I couldn’t get any luckier about this trip. Oh, yes I could, since I’ve already hit my maximum out of pocket this isn’t going to cost us anything. Just the plane tickets and a hotel for extra days we are hoping we can spend so we can visit friends out there. And hopefully visit the Art Institute of Chicago, I’ve always wanted to go there. If they are actually open to visitors with the increase of covid cases. Hmmm, will I feel comfortable going there? Oh my! I just thought of that.
I’m excited to go, and also way stressed out . There is so much to do this week to get ready. Luckily Stuart is very good at planning. He has lists for so much. I am a list maker too, but not to the extent he is. It makes me laugh sometimes.
More news about me. I had a urine test to check on my adrenal function and we found that the hormone norepinephrine (noradrenaline) is high. I then had to do a 24 hour urine test, I turned it in yesterday. When I turned it in the lady said, “This is just 24 hours?” Hahaha, I pee a lot! The test will determine if I have a tumor. Tumors on your adrenals are normally benign so I’m not worried about it. Of course if I have one they will remove it. There is also a possibility that it’s high simply because I’ve been under so much stress, especially from pain, for so long I’m stuck in the fight or flight mode. And it could be caused by a medication I’ve been on, (Fetzima) that I’m tapering off of now. If so the relaxation techniques I’m going to learn will help, and I’ll probably need medication at least for a while. This could explain the increase in my symptoms, the sudden high blood pressure, increased heart rate, high anxiety, prolonged migraine….among other things. I’m actually hoping that this is the reason., it could change everything.
I’m going to try to keep a diary of everything that happens at the headache clinic to share here. I hope it will be helpful to some people.
My headache specialist here, that I’m not fond of, actually suggested I go to a headache clinic because she is out of options, and this migraine has been going on way too long. She suggested Diamond or Jefferson, but when I messaged her to tell her I was going, she didn’t even respond. What is wrong with this woman? And why did it take her so long to suggest this? I’m so glad I’m getting a new doctor in November.
I have a virtual appointment with my psychiatrist in about an hour so she can see that I’m still doing well at the lower dose of Fetzima, so I can take it down even more. This is a very slow taper, it’s kind of frustrating, I really want to get off this as soon as possible to see if it may be the culprit. So I’m off to get ready for that, then I need to do more to get ready for the trip. So much to do and my symptoms are very high lately so it’s very hard to get things done. It’s amazing how we can push through so much. Plus, the anxiety about all this is driving me crazy. I know it’s mostly from the norepinephrine, but it doesn’t make it easier. I do so wish I could drive so I could get some things done while Stuart is working. This is really going to wear him out.
Oh, we are so lucky that our pet sitter is available to come stay with out babies during our trip. So he’s not only pet sitting, he’s house sitting. And he’s going to clean! He said he wants us to come back to a clean home. He’s going to get a big tip from me!
I hope you are as happy to be back here at Picnic With Ants as much as I am. I put so much into this site, I just couldn’t give up on it.
How are you all doing? Have you ever had to go to a specialty clinic? I’d love to hear about it.
“Returning hate for hate multiples hatred, adding deeper darkness to a night devoid of stars. Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”
Martin Luther King
“Kind words can be short and easy to speak, but their echoes are truly endless.”
“Embrace diversity, promote unity; create a loving and accepting community.”
“In every community there is work to be done. In every nation there are wounds to heal. In every heart there is the power to do that.”
Wendy usually posts three mindfulness quotes. Given the many events here in the US and in multiple places around our planet where war, imprisonment, starvation, fear and hate abound, I added one more.
These quotes, while not necessarily and strictly mindful in and of themselves, do speak to things we must remain mindful of: human worth, dignity and value; diversity; community; unity and forgiveness. Which leads to much-needed healing and the return of what, in some cases/places, has been lost: hope for the present, hope for the future. Remember:
“So powerful is the light of unity that it can illuminate the whole Earth.”
January is the time that people make resolutions to do things differently (better) than the year before. My theme for this past year was “Just Stop” (just click here and you can read that post), I will continue to “Just Stop” in 2018 and beyond, but for now I want to look back.
This year, I’ve decided not to make resolutions, sure there are things I want to change, things I plan on doing, things I want to do….The whole Bucket List, you know, however, there is something we often don’t do, we don’t look back and see what we have accomplished. I think we need to do that more often.
When we get sick we often look back on our “old life” and can’t see how much we’ve accomplished since we got sick. We keep thinking about how we can’t do what we used to, I see so many people with chronic illnesses doing amazing things every day, but they can’t see it. They keep looking back at what they used to be….never forget, you are still the same person. The old self and the new self is the same self. Let’s put those together and be okay with it. (yes I know that isn’t easy, even when you feel you have gotten to that point, there will still be times when you think about the “old me” longingly)
So I decided to sit back and look at 2017, and just think about what I accomplished, and I was pretty amazed at what I found.
I worked hard and lost 45 pounds. Cool.
I started exercising. Just little things, but it’s a whole lot more than it used to be and I’m getting stronger so I can do more.
I overcame some pretty severe side effects to a medication.
I worked with my doctor and found the right medication, I didn’t give up.
I survived breaking my foot while alone. I simply iced it, propped it up and waited until Stuart got home to take me to Urgent Care. I didn’t panic. yay.
I reached out to the local Hearing Loss Association of America (HLAA) chapter and I’m meeting new people through it.
I participated in the HLAA Walk4Hearing. How cool is that? okay, so I wasn’t able to actually “walk” that day, but I raised money and I went out there and showed support. and I got a t-shirt to prove it!
We had visits from 4 groups of out of town guests this year, and I handled it all well. (that doesn’t mean it wasn’t challenging, but my guests know my limitations and love me anyway, so it was easier) I haven’t had guest come to my house in a very long time!
We went out of town to see the eclipse! That was so cool; a little mini vacation centered around a most amazing event. (and I made a new friend there too)
I went to an out of town wedding for the daughter of my best friend from the first grade. I felt beautiful (that isn’t something I’ve been able to say in a long time). I had a wonderful time, and I saw people I haven’t seen in 40+ years, that’s amazing. (and now I’m in touch with another grade school friend who is just the sweetest lady, I just love her.)
I’ve had less vertigo this year. Actually, I do have vertigo often, but it doesn’t last long and I’m not completely incapacitated for hours and hours….um..days. I don’t know how much control I actually had over this, but it’s a huge deal for me. (I’m actually thinking something I’ve been doing may have helped, but I’m not sure)
I made some new online friends, and have gotten closer to some old ones.
I went to a Christmas party where I knew no one. (the HLAA Christmas party) I arrived right when the party was ending (yes I read the invitation wrong, I thought it started at 7pm but that was the end time! hahaha) I still met some awfully nice people. (I knew these people would understand if I couldn’t hear them. I exchanged many emails with the chapter leader beforehand and she made me feel most welcome and understood my fears)
I went to a family Christmas party at my cousin’s house. I haven’t been to a family holiday gathering in something like 20 years. I was very nervous, but it went well. I met some wonderful people who were so supportive of my hearing loss, they even practiced sign language with me, I didn’t feel left out, it was nice; and I look forward to nurturing that friendship.
After going to those two parties (and the wedding in October and the Eclipse in August), I realized I can do this!! I can socialize again. No, I might not hear everything, I might have to ask people to repeat themselves, to look at me when they talk, and I might have vertigo…..but it really feels good to know I can do this!! That knowledge is a huge accomplishment.
I searched out and found supplements to help with my conditions. Not a lot, but some that have made a little bit of a difference. I feel more empowered the more I learn about my conditions and the more I am able to help myself.
I have been home alone often and I didn’t die. Okay that may be a bit melodramatic, but Stuart used to have to work at home almost every day, now he goes into the office. Some days I do need him to come home to help me, but I do not need him to be physically with me all the time. awesome.
I baked during the holidays!!!! I haven’t been able to do that in YEARS! and I love doing it, so this was amazing for me!!
I enjoyed the holidays. I know that’s not much of an accomplishment, but the holidays can be hard, and have been at times very hard. This year I sang carols for over a month! I shouted “Merry Christmas” to a Santa that was waving outside of a store and it was joyous when Stuart told me that “Merry Christmas” was shouted back. (I felt like I was in a Christmas movie)
Most recently I’ve begun to “paint” using the AutoDesk Sketchbook app, and I’m creating some pretty nice pet portraits. I’m pretty happy about that.
I started Loom Knitting this year! I’ve made a number of blankets, scarves, and the coolest pair of socks ever!
one more – I only had 2 or 3 (I think) seizures this year. (if you don’t know about me and seizures you can read about it here: Psychogenic Seizures…) How cool is that? Yep, therapy works when you work hard.
Now, I challenge you to sit back, take a relaxing breath, and think back over the year and only think about things you have accomplished (or some wonderful things that happened). There were a lot of things that went wrong this year (like the awful medication side effects, and watching our country fall apart….) but it really doesn’t do me any good to think about that stuff. Look at all the things I did!! That is worth a reflective look at 2017.
(about the photo above: From left to right starting with the top left: Me and Kim, me and Lisa, Walk4Hearing t-shirt Baked Christmas Goodies, silly Christmas light necklace, me in Santa hat Stuart modeling the cool socks I made, a portrait of Max, Me at the wedding)
I’m on Instagram now! (Not as Picnic with Ants, just as me) If you’d like to check it out, I’m wendy.holcombe
Wendy chose the theme: thankfulness; appreciation and gratitude to highlight what a Mindfulness Turkey Day should be. Of thankfulness for what we have tangibly, but most importantly, for those intangibles: the fairy dust; the miracles; the possibilities; grounded in our moments; spreading hands and hearts. Appreciating the touch of a hand; a donation to a food bank; thankful for the moment with friends; aware of the needs of others; and appreciation on the need for us to help.
This Saturday is giving Saturday at my local library. I am thankful I am able to provide some tangible help: toys and books for children and clothes for their mothers.
Wendy has a nasty migraine making working on the computer right now feel deadly, so I stepped in to help – what are friends for? Please send her messages of support as she deals with yet another round of migraines, cluster headaches, vertigo, and back pain. She got so far, but needed to rest her eyes. I so understand, so here I am offering up quotes about thankfulness, appreciation and gratitude. But I would pose we should think of “thinkfulfness” – the ways in which our minds wrap their synapses around the mindfulness approach to living – including celebrations of ourselves, friends, families, and perhaps through donations, or volunteer work
So, I searched beyond my usual sorts of quotes (with Wendy’s assistance), and have more than Wendy’s usual three. These resonated with me in terms of thankfulness, appreciation and gratitude. A cornucopia, and over abundance of meditations on gratitude, thankfulness, and appreciation. I was unable to post Wendy’s lovely image; instead an unedited collage of my back yard.
“I would maintain that thanks are the highest form of thought; and that gratitude is happiness doubled by wonder.“ G.K. Chesterton
“Every day, spread the magical stardust of thankfulness into your life.” Terri Guillemets
“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.” Anon
“Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.” A. A. Milne
“Don’t cry because it’s over, be happy because it happened” Dr. Seuss
“As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them.” J F Kennedy
“Let us be grateful to the people who make us happy; they are the charming gardeners who make our souls blossom”. Marcel Proust
“In the end, maybe it’s wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices.” Elizabeth Gilbert
“We take for granted the very things that most deserve our gratitude.” Cynthia Ozick
images are copyrighted to Lorraine; unable to upload Wendy’s marvelous images.
And to end on a musical note: a song discovered by a search that seems to fall within the theme of thankfulness.
Josh Grobin: Thankful
Somedays, we forget to look around us,
Somedays, we can’t see the joy that surrounds us,
So caught up inside ourselves,
We take when we should give,
So for tonight we pray for,
What we know can be,
And on this day we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though we all can still do more,
There’s so much to be thankful for,
Look beyond ourselves,
There’s so much sorrow,
It’s way to late to say, I’ll cry tomorrow
Each of us must find our truth,
It’s so long overdue,
So for tonight we pray for,
What we know can be,
And everyday, we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though we all can still do more,
There’s so much to be thankful for,
Even with our differences,
There is a place we’re all connected,
Each of us can find each others light,
So for tonight, we pray for
What we know can be,
And on this day, we hope for,
What we still can’t see,
It’s up to us, to be the change,
And even though this world needs so much more
There’s so much to be thankful for.
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 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?
Starting on April 26th, I’ve been participating in a Chronic Pain/Illness Photography Project on Facebook. It is a closed group, but I wanted to share my photos here. By the way, if anyone wants to join the group, you can enter at any time. You can complete the previous projects if you would like, or you can start of where we are now. So far, it’s been a lot of fun, and a lot of support and camaraderie between between people who “get it”.
Many of these photos my long time readers may have seen. Some are photos of my artwork. (I can’t really get out and create many new photos right now since I’m recovering from hip replacement surgery.)
Day 1 – Hope
I made this for one of my doctors. She gives a lot of people hope. Unfortunately her treatment didn’t help me for long, but I always have hope, not necessarily for a cure…..Hope springs eternal.
Day 2 – Loss
This photo represents losing my hearing, and much of my balance due to one of my illnesses, Meniere’s Disease.
manipulated photo –
by w. holcombe
Today I got my bandage off from my hip replacement, all looks good there! You can’t tell in the picture, but I have 6 stitches you can see, but mostly I’ve been glued together, it looks pretty cool.
I haven’t felt good today. The nerve in my back is acting up and my leg is in a lot of pain. I didn’t sleep much last night.
My monkey is guarding my hip that was just operated on so my dog or cat can sit on my lap. In this photo, Kiki is keeping me company. We rescued Kiki right when my hip/back started hurting. The doctors thought I’d just strained it when we moved. I had no idea I’d be hip replacement surgery just 7 months later because my femur head was collapsing because it was dying. Avascular Necrosis sucks. and mine was caused because of over use of prednisone. Doctors caused this disease by treating other diseases I have with too many steroids. If I’m lucky it won’t attack my other large joints. I’m 51, in the last 3 years, I’ve gotten 2 artificial ears (Cochlear Implants) and an artificial hip….no metal detectors for me!! haha.
I’m not complaining, honestly….it’s just the way it is.
and when my hip heals I’ll be able to walk!!
Day 4 – Self Portrait.
This looks a little depressing, but I’m not..not today. I just like this self portrait of me. I took the photo in the bathroom mirror, and manipulated it on Photoshop. It shows part of my cochlear implant.
Some days are better than others….this day was a rough day. Taking the photo helped me get part of those feeling out, and helped me explain them to others.
I still have a hard time with my cochlear implants at the time. My hearing isn’t supposed to fluctuate with them, but it does…a lot! I’m lost, often. People don’t understand why I can’t hear when I have these devices. For those who don’t know, when someone has a hearing aid or other hearing device, it does NOT allow you to hear like a normal person. We often miss a lot. Often HOH/Deaf people won’t tell you they are having a hard time hearing.
I speak up, but it’s amazing how many hearing people don’t hear me. 🙂
Day 5…Tool Kit.
(sorry I’m a day late, yesterday I had a 12 hour vertigo attack…yuck….happy I wasn’t alone, and the violent spinning didn’t last long, I spent most of the time in slow spins…it’s still miserable, but it could have been much worse!) I have a few tool kits, emergency kits…..I believe in being prepared. smile emoticon This is my medication kit.
Top left – all closed up and ready to go. Top right – top part is open, this is where we store my shots and things that are needed for that, and other little things. Plus my med list, with all meds I take listed, pharmacy, prescribing doctor…ect. I also have this list with me in my wallet too. (this includes supplements and everything) Bottom left – bottom part of container is open and top of pill bottles showing…..the “A”s stand for A.M. or Morning, “P” is P.M. or Evening, AP are pills to be taken in the Morning and Evening. If there is a number on the top then I take more than one. I line all of these up and fill up my pill boxes…you can see those on top of my medicine box Bottom Left. I have two morning boxes because I have to take 2 pills before breakfast and the rest after breakfast.
There’s more to keeping up with my meds, but that’s my medicine box. If I’m going out of town for more than a couple of days, I just grab my box. It really has helped me to stay on track, and know when I need to refill my meds, to buy more supplements….ect. It also helps me keep everything in one place. I love my medication kit.
So this is ONE of my tool kits.
One day after hearing me talk about how hard I had been fighting, a fellow Meniere’s patient told me that perhaps I should learn to walk with old Mr. Meniere’s instead of fighting him so much all the time. I had never even thought of that. I knew this disease had no cure, but it never occurred to me to not fight it tooth and nail. Suddenly it hit me, I had to accept it as part of me. I can’t get rid of it, some days may be better, but it will always be there. I accepted it. Once I did, things got much easier. I have a number of other illnesses, I’ve accepted them all. Meniere’s Disease was the hardest to accept….it comes packed with a lot of stuff….and mine is a very complicated case. (my doctors at Duke now say I have “more than Meniere’s”, they have no idea exactly what I have. I have a several complicated vestibular disorders.)
I drew this little doodle one day to show I think I’m perfect just the way I am.
Day 7 – Grieving:
This was a hard subject for me to figure out a photo for. I kept thinking of things more suited for loss. I wanted to show something that worked more for my grief over all the things I’ve lost…. I came across this entry in my journal, and a photo of a flower I took that I think work fairly well.
Here are the words on the journal page, I’m sure you can’t read them….
The tears have been shed.
The lines have been drawn.
Do we dare to cross.
Do we dare to dream again.
The tears have flowed line rivers down our face.
The mourning continues.
How do we hope again.
How do we believe?
I hope you enjoyed my photo journey so far….you may have learned a little about me along the way.
There are more to come!
Remember, if you would like to join me in this photography journey, come join the Facebook group, there’s a great group of people putting out some great work.