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.)
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.
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?
It’s very hard for me to start writing again after I have been away for so long. Especially after I wrote 2 posts that I am very proud of right before I had to go away. Why did I go away? Because my symptoms have been worse than usual. Specifically my migraines.
Me with Migraine and Minor Vertigo by w holcombe
I won’t go into a lot of detail about what happened to me specifically. Let’s just say, my migraines have been off the charts. Lights hurt, Sounds hurt, Smells hurt….yes – Smells Hurt! I’ve spent many days in the dark, without my cochlear implants on, filled with medication to make it so I wouldn’t throw up (it didn’t always work), and some days I had to wear a mask to help keep out any smells that were coming in (and we keep our house as scent free as possible). I’ve also had a lot of Migraine Associated Vertigo (MAV), or Vestibular Migraine, during this time. (you can read more about MAV on the Vestibular Disorders Association Site…just click here.) I have chronic migraines. Having chronic migraines means you have at least 15 migraines a month for at least 3 months a year. (normally, you have migraines more days than you don’t)
A lot of people think migraines are “just a headache”, they aren’t. So I’d like to take a little time to talk about migraines.
Headache migraines are moderate to severely painful, get worse with physical activity, are throbbing and often worse on one side, cause a sensitivity to light, sound, smell and last 4-48 hours (or more) without treatment. If you have any of these symptoms, please talk to your doctor. You do not have to have all of these symptoms to be classified with migraines, you can have a few. There are also different types of migraines. You might want to learn a bit about the different types of migraines…there is a list..here…with definitions and all that kind of stuff.
One in 4 households has a member with a migraine disorder.
Migraine is 3 times more common in women than men, and will affect 30% of women over a lifetime.
The World Health Organization places migraine as one of the 20 most disabling medical illnesses on the planet. Chronic migraines are even more disabling. Yet it is almost impossible to get disability due to migraines. If you have another condition and you can add migraines to it, they might listen to you, but when I filed, they were hesitant to even mention my migraines, even though they are extremely disabling.
Those with migraine are more likely to have depression, anxiety, sleep disorders, other pain conditions, and fatigue.
There is no cure for migraine. Treatments are aimed at reducing headache frequency and stopping individual headaches when they occur. And constantly trying to find the right medications with the fewest side effects to help with this goal.
Prophylactic treatments (to reduce headache frequency) may include avoidance of migraine triggers, medications, physical therapies and behavioral therapies. This is great if you can figure out your triggers. Also, if your trigger is weather related, how are you going to avoid that? I can’t stop the weather from changing.
Abortive treatments (taken when a patient has a headache) include over-the-counter pain relievers and prescription medications. This is great, but you can’t take too many of these because they will cause medication overuse headaches (rebound headaches). See more information below. I am constantly aware of this and often afraid to take medication even though I’m in severe pain because I don’t want to go through withdrawal symptoms.
Prophylactic medications reduce headache frequency by 1/2 in only about 40% of patients who take these medications. And the 60% just suffer??
Medication side effects often limit the use of migraine medications. Oh yes. I know this very well. Severe itching, causing severe stomach pain, heart palpitations, constipation, diarrhea, tingling in my extremities, a change in what things taste like (the last two I put up with until the medication stopped working), Rocesea, low blood pressure…..It’s kind of scary sometimes isn’t it?
I only just touched on the surface of migraines. There are many different types of migraines. I haven’t even talked about all the symptoms I have.
I would like to talk a little bit more about the treatments.
Many of us cannot get the amount of medication we need each month because our insurance will only cover a certain amount. Insurance companies will often only allow only 9 pills of triptans per month, this is an abortive medication. Sometimes I have to take 2 when I have a migraine. That would only cover 4.5 migraines. If it covered 9 migraines that wouldn’t be as bad, but if you need to take 2 for a migraine, you are in big trouble. This medication works best if you take it as soon as you feel a migraine coming on. Everyone I know always waits until they absolutely have to take it because they don’t want to waste those pills. This is so sad. Ideally we don’t have to take more than 9 abortive medications in a month, but that is in an ideal world. Of course, taking to many will cause medication overuse headaches….discussed below.
It’s best if you have a preventative medication, this will reduce or eliminate most of your migraines, if it works. Unfortunately, we haven’t found a preventative medication that works for me. I have had some work for a while, then they stop. We are constantly trying new things. Until then, I’m afraid to take my medication, until I know my migraine is to the point I can’t deal with it on my own. And that is often too late for the drug to work properly. It’s a Catch 22.
We also have to worry about Medication Overuse Headaches, formerly known as Rebound headaches. Defined by the Mayo Clinic “Rebound headaches (medication-overuse headaches) are caused by regular, long-term use of medication to treat headaches, such as migraine. Pain relievers offer relief for occasional headaches. But if you take them more than a couple of days a week, they may trigger rebound headaches.
It appears that any medication taken for pain relief can cause rebound headaches, but only if you already have a headache disorder. Pain relievers taken regularly for another condition, such as arthritis, have not been shown to cause rebound headaches in people who never had a headache disorder.”
For extensive information on Rebound Headaches, The Migraine Trust has a great article titled Medication Overuse, it if very informative. If you have headaches of any kind, and find yourself reaching for medication more than 10 days a month, I encourage you to read this article. This can also include the use of caffeine.
Another issues migrainers face is that we are often labeled drug seekers. I can’t even take narcotics. I have had a migraine that has been so bad I couldn’t see and was throwing up, but would not go to the ER, because I know how so many friends have been treated so poorly there. They have put them aside and just tell them they aren’t going to give them any drugs. I don’t want narcotics. There are specific migraine medications that I want. Luckily, my doctor has taught my husband how to give me those shots so I have them at home. I’m in the minority, I’m a very lucky patient. I am able to see a neurologist who specializes in headaches. There are very few of these doctors. Most people with migraines have to go to a neurologist who see people with many types of neurological conditions, my doctor is very specialized. All she does is headaches. It’s great. She is working very hard to get my headaches under control.
That’s all I have to tell this time around. I have a lot more I’d like to share….not about migraines, at least not right away *smiles*, I hope I can come back very soon.
If I don’t get back before tomorrow…oh who am I kidding, I’m not going to get back before tomorrow….
I wish you all a Happy Thanksgiving! And I want you all to know how very Thankful I am for you. You are pretty darn special to me.
When I’ve been away from blogging for a bit it’s really hard to get started again.
I keep thinking…where do I start?
I’ll have a good day and I will start to write, and get overwhelmed….well I don’t want to mess up a good day, now do I?
Then I’ll have a string of bad days…oh yeah…we know those….and I think, I should blog about those, but I don’t want to sound like a broken record. After the last post I put out, I thought, Gosh…same crap, different day. Not completely, no two days are ever completely alike, but you get my drift. Sometimes people forget a Chronic Illness is called Chronic for a reason. For me, I do understand that….I know my illnesses are not going away, maybe they will get better, maybe worse…. but going away…don’t think so. I do not, however, completely understand it when they change. And lately, they have changed, a lot. Do I want to talk about all of that….well I have talked about some of it, and I’ll probably mention more of it…some I’ll probably mention later….oh you know me, I talk about everything. It will all come out eventually.
Mostly my moods have been, well, in the crapper. Hubby and I and the furry babies to have fun. Laughter is the greatest isn’t it? But the migraines and vertigo…..the fear….the fear…it just doesn’t go away. I’ve had so much pain and vertigo over the last few months, I live in constant fear. and, pardon the pun….but that scares me.
healthshire.com
I know you all want to hear about my complete melt down where I felt like I should have been committed…I now understand what they mean when they refer to people having a “nervous breakdown”. But really, do you really want to hear about that? Tell me if you do, and I’ll tell you about it…just know I’m OK. I didn’t hurt me or anyone else. I just kinda flipped out…yelled, screamed, cried…all at the same time….and did it some more. Then I was exhausted…slept…and cried a lot the next day too…..
I can tell you a few things that I’m pretty darn sure contributed to it….maybe you won’t worry so much after that.
I was on a certain medication for my migraines, it is also an antidepressant. It wasn’t working, so I went off of it. I was not on high enough of a dose that I should have needed to taper off of it. I think that was wrong. I crashed right after I stopped taking this drug.
I have a lot of crap going on. Still having very intense migraines…A LOT. Like almost every single day. And vertigo, the same thing. To the point, I hate leaving the house. Did I mention fear?? I have been leaving more, and most of the time I have a vertigo attack when we are out. I’m starting to get less and less freaked out by this. Just get me in the car, and I’ll deal. I’ll talk more about my vertigo attacks sometime in the near future, they have changed a bit, and my treatment for them has changed a bit. I should share some of that. However, I’m having these spins when I turn over in bed, it scares the crap out of me. I’m asleep, I wake up a little…kinda…go to turn over and BAM..vertigo! It doesn’t last long, but it is terrifying. Sometimes it does last…so I never really know, but most of the time, it’s just a few seconds. There’s other stuff too. I’ll tell more later. It’s kinda interesting if you’re into that kinda thing….you know, sadistic.
Menopause. Yeah, there are things about this that no one told me….why? Why didn’t my doctor tell me more about it? Do people just assume your mother is going to tell you everything? What if you don’t have one? Well this is a matter for a whole other post in itself. Yep…I think it’s time we dish a little bit about the big M. And I actually don’t have a lot of symptoms…golly, I sure feel for those ladies out there who have it bad! But one thing I am having recently, every month I feel like I’m going through my period. The mood swings…really bad, cramps…all the goodies, just no blood. Yes I said it! In October it will be 2 years since I’ve had a period, and this starts now? Pfft!
So….there ya go…..those things led to a melt down. “I’m sick of being disabled at 52!” and much much more!! I even hated my husband because he could take a walk and I couldn’t. Oh yeah, I was completely irrational, and feeling sorry for myself. No….I have been so ANGRY I have found it hard to live in my own brain. Who wants to live with those kind of thoughts all the time? Snarky, oh way beyond…ew.
I’m trying hard to pull myself out of it. And you know, I do a pretty good job of it. But outside factors have been eating away at my normal brain. This is when I decided to try what a friend of mine used to say she did, “Fake it ’til you make it.” She said she would fake the feeling good and put on a positive front until she really felt that way, and it often worked. So I decided to do that. It kinda worked. I had some good times during it. But I still had that …urgh…underneath. *umph* Still it did help a bit.
I combined that with a lot of deep breathing. *Ahh*
And trying to do more mindfulness…but it’s darn hard when your head is hovering around a 7 every day, spiking to a 9 many days. And the vertigo has decided it’s going to start doing this new funky thing where I suddenly feel like I’m falling down an elevator shaft…just free falling!!! What the heck??? I found myself clutching to Stuart and screaming….”I’m falling!!! I’M FALLING!!! PLEASE DON’T LET ME FALL!” Yes my brain knew I wasn’t really falling….or maybe it didn’t, it sure wasn’t telling me I wasn’t…..I sure felt like I was falling into an abyss. That is one freaky thing, I tell you. When they say people aren’t afraid of heights, they are afraid of falling…well duh! I’ve always been afraid of heights…well guess what, that terror comes out when I get this weird vertigo. It has happened a few more times and I’m better with it now (kinda), I can’t imagine what I will do if it happens and Stuart isn’t with me….because it is freaky….but less freaky than the first time (um…kinda). My brain is beginning to wrap the truth around the situation that I really am not falling, no matter what my vestibular system is telling it. *good brain, I knew you were one smart cookie*
Now that makes it kinda scary to go out in public. Can you imagine if I were in a store and suddenly I start screaming, “I’M FALLING!” Oh yeah….Call the cops, this chick is doing acid!
Soooo, any who, I’m completely losing my train of thought and going all over the place aren’t I?
See this is what happens when I haven’t posted in a long time. I think of all these things I want to tell you, and things just start tumbling out.
Maybe I should just stop for the day. If I don’t I might end up putting this down and then I’ll not get it posted and you will miss me. You do miss me don’t you? Yeah I know, I’m a little cheeky today. *wink*
Thank you all for the outpouring of support and encouragement about my blog and writing and well just me being me.
The comments here and on Facebook, emails….well, everywhere…I was overwhelmed by the love!
I’m sorry I haven’t posted before now….I’ve had some bad and ugly days recently….there’s been come good and pretty times in there too, maybe not whole days, but I’ll take it!!
First right before I went to the appointment I’m about to talk about, I broke my pinky toe. Yep, I mean within the hour before, I caught my toe on my nightstand and OUCH!! I saw stars and everything. Pretty little stars. *snort* It’s been a while now…it is still slightly sore, but it has all healed, finally!! It did mess up walking on my hip a bit though….same leg. But I didn’t fall!! Good thing!!!
I was very excited the beginning of June I saw a new neurologist here in Charlotte. She runs the Carolinas Headache Clinic in Matthews, NC…so it really isn’t in Charlotte, but it is so close it may as well be. The first appointment I had with her she spent over 2 1/2 hours with me. I don’t know if that is her normal time for a new patient or not. I know she sets aside a longer appointment for a new patient, but I was also her last patient for the day so she took her time. She gave me a very thorough exam and we talked at length about my medical history. She was very interested. I was very impressed. I love my neurologist at Duke, who also specializes in headache pain (my doctor at Duke recommended this doctor, they know each other well).
As much as I have loved my doctor at Duke, I think this doctor will be able to really concentrate on me more. She won’t be so over whelmed with all the influx of patients from the system at Duke. (I hope that makes sense) The doctor here is very interested in my Chronic Persistent Daily Headaches. (I have a headache all the time, it ranges from about a 3-5 on a scale of 0-10 pain scale, I have had this headache since I was 11 years old, right after my first migraine) She believes if we can break this headache then we can break the migraines and cluster headaches. Wouldn’t that be nice?
She started me on a new medication, it was to hopefully help with the daily pain of my head and my all over pain. Unfortunately, it hasn’t worked. However, I don’t think we can judge it fairly. I am on a drug called Limbrel, this helps with inflammation and I had problems getting my prescription for over a month. (long story short…the doctor faxed in the prescription but the pharmacy said they never got it…this happened over and over, finally they got it straight…why it took so long, well I have no idea, but I finally have it! 3 months worth, thank goodness. I had no idea how much this was helping my joints and all over pain, I was having trouble typing my joints in one of my hands were hurting so much.)
The past month has been filled with the worst migraines. Let me give you a little run down….Out of the last 25 days I’ve had 22 migraines, 1 cluster headache, and 15 attacks of vertigo. On July 2nd a vertigo attack started around 3pm and lasted until after 3pm on July 3rd. (July 2nd was my birthday…I will just have to celebrate 364 Un-birthdays!! Want to have a Mad Hatter Tea Party with me??)
Can you guess why I haven’t been posting? Or reading my dear friend’s blogs?
I admit the depression took hold of me and jerked me around a bit. I think I had some reasons, even if I didn’t have Bipolar I disorder, but I admit my emotions do go a bit extreme because of my illness. The demons didn’t knock on the door, they busted it down! For a while there I thought I was lost. I was drowning, big time. I was having panic attacks, heck I’m still having a few of those. I’ve been having trouble going out of the house again for few of having attacks. I hadn’t been doing my mindfulness practice…except during vertigo attacks, and sometimes not then, sometimes I would completely freak out. (however, I’m relieved to say that most of my vertigo attacks have been mild, by that I mean slow rotation, they haven’t been rapid spinning….but I won’t go into detail about what they were like. Just know they aren’t as scary. However, I will just say….they are exhausting.)
I’ve been trying hard to pull myself out of the depression. The odd thing about this, the medication that the neurologist put me on is actually an antidepressant. I was really hoping it would help with this too. However, I think the fact that I was in a lot of pain, and had so many headaches and vertigo when the medication I was taking was supposed to be helping…well this was making me more depressed. Makes sense right? Plus I have a few other things going on in life that are stressing me out too.
Recently I’ve been diving into my mindfulness studies again, and trying to meditate. Meditation doesn’t fix things, but it just makes me be here. I was so caught up in the fact that I was in pain, that is where I was, I was hurting, angry, sad, scared, did I mention angry…oh you would not believe the anger that was popping up! wow! I hate it for Stuart the past few weeks. At least he couldn’t hear the even more snappy things I was saying in my head. ewww.
something I need to remember
So, I’m focusing on just being here. I’m taking a lot of deep breaths, and I’m just trying to be me.
On a different note….I’m in physical therapy now to help my hip get a bit stronger and have more range of motion. I have a day in the gym one day a week and a day in the pool one day a week. The pool is wonderful. However, I’ve had to miss a few sessions because of the pesky vertigo. The last PT session, the therapist really showed me that I am not as strong as I thought I was, she kicked my butt!! Whew! However, I’m afraid that the new exercises that I have been doing have aggravated the back injury. I have been in so much pain. The sciatic nerve has been shouting at me. It’s not just yelling on my left side now, it’s screaming on both sides. I’ll talk to her at my next session tomorrow. I may have to go see the spine doc again.
Well….I can’t think of much more to say today.
I don’t know if I’ve covered good, bad, ugly…and a little pretty, or not. But there is some of all in my life.
Good….focusing more on mindfulness again.
Bad….vertigo, migraines, back pain…being really mad there for a while.
Ugly…umm, vertigo sometimes, and you don’t want to see my face when she’s kicking my butt in PT. hahaha
Pretty….My new headache doctor, she’s really pretty – but not as pretty as my Physical Therapist, oh my! The feelings I get from both my new headache doc and my PT.
I will be having my hip replacement on April 14th.
I admit I’ve had my surgery date since right after my last post, but I didn’t want to make a post that just said my surgery date, so I’ve been procrastinating. I’ve also been busy getting ready. There’s really a lot to do. Had to get blood test to make sure I’m not anemic. If I had been I would have needed to start a drug to build that up a month before surgery. Since I’m not, I still need to start iron supplements 2 weeks before to reduce the chances of needing a transfusion. I’ll soon be having the post-surgical mobility people come out to help set up our home so I’ll be all set up after surgery. For now there are certain things we know we need to do and are trying to get those things done. (like lift a chair for me, and the bed…) There’s just all kinds of things I have to do……
Aqua Physical Therapy has been going well. It is magical. I get in the water and suddenly I can walk with no pain. I go from not being able to put weight on my leg without excruciating pain, to no pain! Amazing. Some of the exercises to hurt, can’t avoid that, it’s so different than normally being in physical therapy when you feel better and better as you go along. My pain is getting worse. We understand why, of course, but it’s difficult. However, I am getting stronger. I can do more repetitions on some exercises, can walk further, I just can’t certain exercises any more, and we have to change other exercises . She has mentioned how amazed she is at how much better my balance and vertigo have been. I noticed it too. When I first started going to the pool I was a woobly mess; the last session, on Thursday, I walked the length of the pool without having to have her hold on to me. That’s huge really.
On Sunday I woke up with vertigo. Just a moment and it was gone. I started to move and it was back. Ughumph. Back to my head on the pillow and it settled down. What the? I tried again. Same thing. So, I tried moving my head on my pillow….sure enough, if I moved my head a certain way the vertigo would start, fast! Oh it was BAD! Head back to neutral! Positional vertigo! I have no idea why. Normally when I have positional vertigo it is in conjunction with a migraine. So I took my migraine medication. It didn’t work. All day Sunday and Monday if I moved my head I was spinning. My only relief was to lie on my LEFT side. During the night on Monday it woke me up when I moved my head the wrong way in my sleep. I almost threw up in the bed. ughumph! Then I woke up on Tuesday still feeling very off. I was so cautious, I wasn’t sure I even wanted to attempt to move my head, I decided to just go to the bathroom. I hobbled to the bathroom with the help of my walker my head tilted to the side. In the bathroom I held on to the sink and straightened my head. No spinning. Good sign. I tilted it back. No vertigo! Really? I rotated it around …very…very…slowly…no vertigo. WOW. Yes I’m still very wonky and feel…well…off…but I’m not spinning! thank goodness.
What would this mean if it happened right after my surgery. Should I be thinking about this now? Really how can I NOT? I know I can’t change it if it happens. So, I have to think about it, I just do! I need to figure out a better way to handle this situation if it happens during my recovery. The only way that I was able to really stop the vertigo was to lie on my LEFT side. I’m having my LEFT hip replaced. I won’t be able to lie on that side for a while, at least not constantly for two and a half days. I’m not going to be able to figure this out right now, but I have to think about it. Getting up and down and keeping to the “rules” on how I can bend my hip was pretty darn impossible too. But that will have to be done. Hopefully that will be easier when I have a chair set up for me. Also being able to just lean to the left in the chair but not put all my weight on that side might would work better in a chair? If I have a bad attack and I can’t tell what way is up, or down, or left, or right….I have no balance at all….really, it is VERY hard to explain…there is no way I will be able to control how I fall in a situation like that. I’m not just dizzy, I have no clear vision at all, what I’m seeing is like a camera that is just spinning around and around as fast as it could be….and it doesn’t stop. I can’t tell what my body is doing. It’s not just what I’m seeing, my body feels as if things are moving too. When you are dizzy you feel a little off-balance. When you have vertigo at its worst you feel as if you are being tossed around. When I tell people I get vertigo, they often think I get dizzy. It isn’t the same thing. It’s funny, when I haven’t had vertigo for a long time and then I have an attack I forget just how bad it is. Not really….it is there in my mind….but my body forgets. It has to I think, for self-preservation. If it didn’t I think fear would control my life.
Imagine walking in your house when your porch looks like this, but it is moving, and you feel like everything is moving?
As it is now, my body handles it much better than it used to. As long as I’m in a safe place, lying down. I ride out most attacks pretty well, thanks to my mindfulness techniques, and a little help from medication. If I’m walking….that is terrifying. When this first started happening my head turned the wrong way when I was coming out of the bathroom and I started spinning fast! The walls moved, the floor moved, I grabbed the wall and held on! Luckily Stuart was right there. (I’m so lucky that normally when I need him most he is right there.) At this time my head tilted to the left and the world straightened. Oh, I had my head at the wrong angle….duh. I knew this was positional vertigo. Remember, living one moment at a time….without judgment.
Since this happened I think it showed me I can’t wait until it happens after my surgery to think about it. I have to think about it now. I am going to talk to my physical therapist, and the post op physical therapist about this. I’m lucky because my physical therapist who works with me in the pool is also a physical therapist who works with patients as soon as they come out of surgery to help them understand the right way to get up and down and stuff like that. She has already showed me some things so I’ve been practicing. I think that’s a great idea, that way I think I’ll be much less likely to goof up after surgery if I’m already getting up and down the way you are supposed to.
Not long now, and I will be in much less pain, but I’ll need to be careful. A few restriction that I think will be hard to stick to. I was talking to a new friend who had this done for the same reason a couple of years ago, and she said that it went so easily that it made it difficult to follow the rules for as long as they say….but it’s very important to do so. I’m going to try my darndest! I’m really good at following instructions, I think, why go through all of this and not follow the recommended instructions? I sure don’t want to mess up and end up having surgery again.
So, this time I think there is a bit of thinking about the future to be done. Not really thinking about it as in, worrying, or planning it out and being disappointed if it doesn’t happen….but making plans to be better prepared. That’s all I can do. I’m not going to fret about it. I will try to be as prepared as I can, that’s it. If things still happen and I end up falling and the worst happens, well then it happens. I will know I did all I could do to prepare. There’s a difference in living in the moment, not living in the past, not worrying about the future….that doesn’t mean you can’t make plans try to be prepared. However, if things go south, don’t get all out of shape, you tried to prepare, that’s all you can do. Keep being mindful. Take one moment at a time. Take care of yourself. That’s all you can do. That’s all I can do.
I know, I haven’t posted in a while. I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.
Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post. This is part of the reason I started a blog. It isn’t just for other people, it is for me. To get things out, and to keep up with things. Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
image courtesy of pixgood.com
Of course one of the main reasons I started this blog is to let people know they aren’t alone on this Chronic Illness journey. If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again. I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained. Whew! Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold. You will understand as I continue. I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles. I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear. But I’m in severe pain. They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis. I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments. I’m lucky I don’t have severe flare-ups very often. However, I do have little flare-ups often. This has been a VERY SEVERE flare. I went to the doctor on Monday, February 2nd. Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection. She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.” She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues. Some umbrella condition. You know I’ve never had a doctor say that to me before. I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much. I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of. I think I might just talk to her again. (she works with my new PCP)
On the way home from this doctor’s appointment I had a vertigo attack start. Got home and it was BAD. I’ll leave it at that. You all know how what a BAD vertigo attack is like. I didn’t keep up with how long it lasted. I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark. I woke up sick again and it was about 11pm. I was so nauseous for 2 days. I’m not normally like that. Usually after an attack the nausea leaves me after a few hours. The anti-nausea meds work pretty well. This time, I was really sick for days. Ick.
On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip. This had to be rescheduled. They didn’t have anyone who could do this for TWO weeks. 1st thing that was put off because of something else going on with me.
The next day I had an appointment with a new neurologist at the Headache Clinic. I had to reschedule because I was simply too exhausted to even move my head, and too nauseous. I was afraid if I pushed it I would have vertigo again. Now my appointment is in March. *sigh* 2st thing that was put off because of something else going on with me.
I went to see a new Pulmonologist on January 30th. My breathing test came out good. I do not have COPD. That’s good to know. So why am I coughing up phlegm every day? EVERY DAY since October of 2012? Yes my breathing is better, but this coughing up stuff is gross. I get awful looks. People seem to think I have some horrible disease. I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer. And my new doctor said, “I don’t know if you have Asthma.” What? He said he needs to see my old records. He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test. A lot of people don’t want to do this test, they’d rather just be treated for the symptoms. Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it. That is what the doctors did with me. However, I was not presenting with the symptoms when he saw me. So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough. So I need to have a barium swallow on Friday, February 6th . Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th. 3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip. It is set up for this Friday, February 13th. I will know soon if my hip does in fact have avascular necrosis. If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything. (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come. After all, none of my worrying about it will change anything.
Want to hear something really funny. After all of the things I’ve been through. All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water. I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes. But I have to use these food restriction of I get sick.) I have been told in the past to restrict my intake of chocolate because of migraines. Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me. I just didn’t over do it and I was fine. Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK. But if I limited it to my little square I was good, all the way around. And I was a happy girl. I could still have chocolate.
Dark Chocolate image from medicalnewstoday.com
Then it happened. I had my square and immediately I got the worst migraine. Oh no! and my bladder started to scream! What? No!!!!
I waited a week. I tried it again. It happened again! NOOOOOO! Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!
At a little after 6am Stuart was leaving for work and I woke up and decided to eat a little something and take my first steroid of the day.
I woke at 8am with my stomach hurting…ugh, steroids. Then I thought, “Oh good, it is better today, knock on wood”…and I really did! I took an antacid for my stomach and went back to sleep.
I woke up at 10am with horrible heartburn and spinning. sometimes you just want to cuss!
I thought, ok….slow. I can handle slow. I hope. I took meds and slowly, very slowly started to get up. Ah…let’s just lie here for a minute.
Try again….slow. VERY SLOW…. I feel like I’m walking on a merry-go-round, and it’s on a rocking boat….ugh…my stomach takes a lurch…it’s ok, just stop here for a second. Grab my walker….oh nice walker, I love you so much. slowly I get up…I am sure no one has ever seen anyone move so slowly. Once I am up, well kind of up, I am hunched over the walker with my head leaning to one side, I am doing pretty good. I start to head to the bathroom. WAIT…phone! I grab my phone, just in case. If I fall, I need to make sure I can get help. and off to the bathroom. I DID IT! I got to the bathroom ALONE! During vertigo! it was a very slow spin but I did it!!
I did it 4 times today!!! I have been slowly spinning all day!!! If I keep my head exactly still things are pretty still, but if I move, WHOOSH!
This morning I was very proud of myself. Not only did I get to the bathroom alone, I got in the kitchen, grabbed a banana, a couple of pancakes that were in the fridge and got back to the bedroom…got my CI’s….and things I’d need for the day (meds and such) and go myself to the couch. Once I went from the standing position I was in to sitting the vertigo went WILD! What on earth? who knows this is the most bizarre thing in the world, no rhyme or reason to me!
So I collapsed and tried to calm down…and hung on! Whew!
It slowed, and I was ok, but not great by any stretch of the imagination.
It’s about 11am by now. Stuart had an appointment this morning and texted to check on me. I told him I was spinning but I handled it, however, if he could stop by on his way back to work and help me get settled it would be great. So he did….and I sent him on his way! Even though I was not doing well when he left. It is now almost 4pm and I have done a good job of handling things today.
I’m proud of me.
I still want to share with you guys just how I got through some of the roughest parts this past month, and everything that went on in my head, and heart. Things I didn’t want to admit to. I was ashamed to admit I wasn’t handling things as well as I thought I would. But I got through it, and learned a lot along the way. Of course, I’m still going through it….so…we’ll get there.
One thing that really helped me get through all of this…..
So I feel bad about it…feel bad. That’s OK. Acknowledge it. Don’t feel so guilty about it. I don’t have to feel positive all the time. My positive go to attitude is still there, but it is perfectly fine to feel bad about this, to feel sad, angry, and well….just bad. I’m not going to wallow in it, I’m not going to get stuck in it, so I don’t need to beat myself up over it either. Accept it, and have some self compassion.
Things I should note today…. woke feeling better around 8am. Woke with vertigo at 10am. Had rotational vertigo all day, various degrees of spinning speed. Right side of face/head felt funny. (by this I mean, it feels thick). Had a migraine. Took a Maxalt, pain got better, but side of head sensation did not go away. *could some of the vertigo be migraine related? Ears feel full, but not as full as they have over the past few weeks. When I drink I can really feel the coolness in my right ear, it actually feels like water gets in my ear. there is not water in there if I feel in there, but it feels very strange. am I just noticing this because I’m hyper aware now?
What is wrong with me? This is the question I kept asking over the past couple of weeks. Heck I’ve been asking this question a lot over the past couple of months, I just keep seem to be falling apart. But I don’t think that way….or I try not to. I accept things as they come. I just roll with the punches. Yeah. Well that isn’t how it has been going. I’ve been trying. But I’m not succeeding right now.
It has just been too much. This post is about the latest….
I mentioned a little in the beginning of my last post: VERTIGO…MAJOR!
It started the beginning of this month. I would just suddenly have this whoosh feeling and I’d start to spin. It just felt different. I can’t explain it. Maybe it was different because I had been feeling so off for so long. I had been having the severe disequilibrium for so long (feeling like I’m on a boat all the time) and not being able to focus on one spot without it moving. Maybe? Really, who knows. But these attacks…they are different. The start, it just feels like I moved my head too fast, but I didn’t move…and suddenly I’m in full spin.
One night I had a drop attack, but it felt different from any I’ve had before, and I haven’t had one in a long time. We were watching Jeopardy, and suddenly I felt like an entity had just come up and partially entered my body and pushed me over on the couch and I gasped…one of those screams where you suck in all your breath…I just fell over on the couch and was in full-blown vertigo. If I had been standing, I would have hit the floor hard! It scared me so much. Not just the falling, but that feeling before hand, I literally felt like there was something trying to enter my body and pushed me over. It scares me just thinking about it.
When it started I had just had a day completely vertigo free. I could focus on a spot without it moving, the boat stopped. Relief.
What happened for that day? What happened after that day? These are questions my mind likes to ask but no one can answer, I try hard to stop the loop of questions, but it’s hard. I’m an inquisitive person. I’ve always been that way, I want to know how things work, I loved science and proving theories. Telling me that no one knows something about a scientific problem is hard for me. I keep thinking I’ve accepted that. And I have. I have. But I don’t want to. I want it to change. I want to know what is happening to me. What changed? And more than that, I want for people to stop asking me that question. It is hard enough for me to not have the answer for myself, but when someone else ask it, it cuts me to the bone. I want to just scream….I DON’T KNOW! Please NEVER say to a chronically ill person, “Why can’t they do anything?” of “I think you need to find a new doctor.” You have no idea how many doctors I have been to and still continue to consider. However, this is my life. It is my decision how I get treated. You do not know what it is like to live with this, and you have no idea what the treatments are….do not tell me what I should do. (unless of course you have this disease then you can talk to me and if you over step your bounds I will feel I can tell you to so. That’s different, we are going through the same crap…excuse my colorful language.) However, normal people do not understand. Heck, some people who have this don’t understand, it’s different for different people.
So….off that soap box and pity party….
I went to the doctor on Wednesday. Yes the doctor here in Charlotte. He really doesn’t listen. I will not go back to see him. I am glad I will be able to see the audiologist here when I can’t get to Duke, but I will have to find a different doctor. (and I don’t feel right going to the audiologist since they don’t get paid, I’ll only go there if I absolutely have to.) They do have a lot of doctor’s in that practice, however he is supposed to be the “head guy” who knows about Meniere’s. I will be doing some research, but if he is the head guy…I am up a creek. Let me tell you about my latest visit.
I did get an appointment rather quickly, that was nice. We got to the office and I had to be taken in by wheelchair. They thought I was in a wheelchair because I had back surgery?? I never said I was having back surgery. I did tell them I had a herniated disc and was having physical therapy, therefore I wouldn’t be able to do vestibular therapy until I got that straight. (Where did this information come from?) He asked me about these attacks, how long they have been happening and what they were like. I told him …bad attacks lasting 30 mins to over 3 hours, 3 to 6+ times a day, coming on with no warning. He asked me to describe the attacks. I looked at him and said. “You know what a Meniere’s attack is like.” Yes, I was a bit snarky. I had been through telling him what my attacks were like the last time I was there. I have never had to tell my last doctor what my attacks are like every time I go in there. He said “Yes, but I want to know what your attacks are like.” I started to tell him, I told you last time, but I didn’t. I said, “severe rotational vertigo, severe tinnitus, want to die!” “Yes, that’s normal” DUH! Stuart them tells him how much my eyes have been vibrating with these attacks. I got him to really look this time, and he really noticed, he as surprised he hadn’t seen it so much before. My eyes really dilate, and I have nystagmus really bad during an attack. I need light or I get really sick, but lights also hurt because my eyes are so dilated. My eyes hurt so much after just a few minutes, after hours…well dang! So the lights are normally dim and my face is in a bucket throwing up, of course my darling husband doesn’t normally see my eyes vibrating. Poor thing felt guilty he hadn’t really noticed as much before. I was having him look because something with Meniere’s one eye will vibrate more than the other telling you which ear is causing the attack…not all the time, and not this time…darn.
Back to the visit. The doctor then looked in my ears and does this thing where he makes me follow his finger with my eyes….he moves his finger really fast. I tell him…that makes me sick. He keeps telling me to look at it. I look but I will not look fast. I am not going to throw myself into a spin in his office just to perform his little test. (I know it is neurological test, I’ve had it many times before, you do not have to do it so fast) I had already taken 3 or 4 Valium that day because of the attacks I’d already had. I can tell he gets frustrated with me when I don’t do the test as he wants. oh well. He asked what I take for my attacks, I told him, Valium and Phenergan. He said, well that’s the best. He asked if I had this happen before. Yes, in the spring of this year, and explained it had been after I had been on a high dose of steroids for my migraines that tapered off too fast. My ear doc had to put me on steroids that tapered off slower. He said, I told me I only have attacks 2-3 times a year. I said, I only have very severe attacks 2-3 times a year, I have small, and mini attacks almost every day. He said nothing. He paid NO attention to that. He acts like since I don’t have severe attacks like I have had the past couple of weeks all the time then this is not debilitating. He really heard nothing I said about how this is affecting my life. He heard nothing about how I can’t focus on things without them moving. He DOES NOT LISTEN TO ME! Why? Later when I got home I was so upset, I talked to Stuart and was in tears, “Did I down play my Meniere’s to him the first time I saw him? He doesn’t understand what this is doing to me.” Stuart then told me…that no, he just doesn’t listen, he only hears what he wants to….I digress again…back to the visit….
So he wrote me a prescription for steroids. Good, that is what I expected. He told me the dose and I thought…That’s High. He then said some people get very agitated and have mood swings on these….I told him I do, and it can be pretty severe on a high dose. He ignored me…”If you have a problem call me” I just told you I have a problem! Listen to me! I explained again about how the high dose prescription from my migraine doctor that tapered off too fast made me spin. He said, “This won’t make you spin, but if you have a problem, call me.” Hmmm, are you listening to me?
I got the prescription and started it. The next day I couldn’t stop crying. I looked that the dosage….and the tapering. 60mg a day for 14 days! then 40mg for 2 day, 30mg for 2 day, 20 for 2 days, ….you get the idea. 14 days then 2 days each…that’s a pretty fast ramp down! and 60mg of prednisone for 2 weeks!! I will be going out of my mind! It is very hard for me to deal with these emotional swings with my bipolar swings anyway. It makes me feel like I am having bipolar episode, and it drives me crazy. I can’t trust my own emotions. I don’t know if all of my mood swings are from the steroids or if I need to be evaluated for bipolar stuff. So, I thought….I can’t do this. I decided to look up my chart on the Duke Patient Portal and see what my prescription was from my doctor there. It was for prednisone, 10mg tablets, so that was all good, but the dosage was much different. I’m following his dosage. He starts out at 40mg for 5 days, then goes to 30 for 5 days….ect. a much slower taper down, and I know I did fine with it. I will also be taking half as many pills.
Is this the right thing to do? Should I be treating myself? In this case….I don’t really think I’m treating myself. I don’t like to go against a doctor’s prescription, especially about steroids they can mess you up! But I know my tolerance to them and I know they do mess me up. I once swore I would never take them again….but sometimes you have to do something that you don’t want to do to survive. I feel like since I couldn’t go to Duke to see my doctor, I’m doing the next best thing. We did call him and he said he felt steroids would help again, but didn’t feel he could prescribe them without seeing me. (My point…as I say in my disclaimer, I am not giving medical advise. I do not advise anyone to ignore what their doctor tells them. This is just my story.)
Good news. The steroids are helping. I’m on day 3 now. The first day I had a mini attack and a few hours feeling like I was VERY drunk, I was more sick to my stomach than I was during most of my attacks, and that is saying a lot! Unfortunately, I had run out of what I had been using to really control my nausea, so I was really sick that night. Yesterday, I didn’t have an attack. I did have that drunk feeling again last night right when I was getting tired, same as the night before, thankfully it didn’t get as bad or last as long. So it looks like things are getting better day by day. Tonight, I am going to force myself to go to bed and to sleep as soon as I feel tired…maybe that will stop that drunk feeling.
that is the story of my last couple of weeks.
It has been hard.
The last few months have been hard. Physically and Mentally. It has also been hard because the doctors I trust are 300 miles away. I’d also like to see my therapist, this has been a lot to process, and I’d like to have her to help me through this with the mood swings. I moved here feeling so much better, with so much hope, so much promise. I thought I was ready to handle anything life through at me. I was wrong. I’m still trying hard to live in the now. I’m trying to accept things as they are, and accept my feelings … nonjudgmentally. that is a BIG thing. I may be having a really rough time, and I may not be able to accept life as it is without wishing it to be different, but that’s alright. I’m just not there yet. Right now I’m hurting, and I need to be here for a little while, and stop judging that. I’m still hopeful and good and happy and loving….it is just that the hurt is in front of it right now. And I’m not going to judge that. I’m just going to wait until it goes away, and since I accept that is here, and a part of me, the faster it is lifting and the other parts of me are shining through.
Picnic with Ants 