My Chronic Migraines

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photo of and by w. holcombe

I have Chronic Migraines.  I’ve been told this before, it was said once again yesterday.  I’ve met a number of Neurologist who thought they could make it better.  I still have Chronic Migraines.

I’ve been to 2 Neurologists who are Headache Specialist.  There aren’t many of these doctors out there, I’m lucky that I have been able to see 2 of them.

The first specialist I was seeing was a Duke, I moved to Charlotte and started seeing a specialist here.  I never thought we’d get to the point where we are now.

I’ve tried so many medications.  I’ve tried Botox, and well just so many things.  There are some medications I can’t try because of reactions I’ve had to other medications.  My doctor is at the end of things to try.

I was taken off Topamax when I had the seizures because they thought that it may have caused them, now that we know it wasn’t the medication I can go back on it.  My migraines did get worse when I was off of it, but my headaches were a long way from being optimal when I was taking it.

Over the last 3 months I’ve had a migraine ever day except 8.  This does not include the headache I constantly have.  When I first started seeing the specialist here she thought we could get the daily headaches under control and then the migraines would get better, well neither of those things happened.

Now I’m going back on Topamax to at least get me back to where I was.  Having migraines about 15 days a months instead of about 30.

I saw my specialist yesterday and she said she is looking out for studies for me to participate in.  There is nothing else she can think of.

I’ve decided to go to a Functional Medicine group to see if they can help me. Unfortunately, they are not covered under my insurance so this can get quite costly.  I’m not sure how much I will be able to afford.

(Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for chronic illness and disease.)

This is Invisible Illness Week.  I’m not sure I’ll get it together enough to really post much about it, but Migraines are an invisible illness.  I look perfectly fine yet I’m struggling every day.  I have Persistent Daily Headaches and Migraine headaches.  Every day my head hurts.

Remember, just because someone looks perfectly fine doesn’t mean they aren’t suffering silently.  We may look great and still be sick.

#ThisIsChronicIllness #InvisibleIllness

 

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Stress should be a 4 letter word

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Stress is widely known to cause the chronically ill to get sicker, to have flares, to generally feel worse…  Stress is an ugly word that I hate to hear my doctors say. “This is being made worse because of stress.”, “You need to get your stress under control.”  I can’t tell you how many times I’ve heard this.

The amount of stress I’ve been under the last few months would make the healthiest person feel bad, for someone who is chronically ill, with both physical and mental illnesses this has been a very trying time.  I’m sure you are wondering, “What has been going on in Wendy’s life?”  Well let me tell ya!

This may not be in order, I’m just going to get it all out.  We moved, we had a friend move in with us, I was having vertigo a lot for a while, I’m constantly afraid I will have a vertigo attack, I’ve been having migraines daily for months, my father passed away, I went through all the stress building up to my father’s death, the stress of the funeral….I feel like it has been non-stop.

I’m wondering if my migraines are worse because of the stress?  My chronic daily headache now has a base line of a 4-5 where it used to be 2-3, on a 0 – 10 scale. The pain in my neck and upper back due to degenerative discs has greatly increased, I’m in physical therapy for that now.  (going to PT is another stress, as Stuart has to take time away from work to take me to my appointments, this time has to be made up, that’s hard on both of us; and some PT sessions seem to make things worse, that’s a stressor too.)  I can’t take pain relievers which causes a certain amount of stress too because I never have any relief. My tinnitus has been very loud.  Some days my balance is worse than usual.  My emotional state is not well.  I’ve been depressed. (yes I know I have reasons to be sad, but this is more than that).  My anxiety is very high.  I am extremely irritable (I’m shocked at how much Stuart and I have been arguing, and bickering, normally we rarely argue)  I’m restless, yet tired, excessively worried, feeling like I’m trembling inside, very sad, my appetite is out of control, I am extremely self-conscious, I have very little self-esteem and I keep beating myself up for things I have no control over.  I can’t relax; I can’t give myself a break; I’m not being kind to myself.  I’m just a mess.

I’ve been having a very rough time.  This is upsetting because I’m at the best place I’ve been with my vertigo than I’ve been in a couple of years.  I haven’t had a bad attack in almost 2 months.  This is surprising because it normally gets worse when I’m under a lot of stress.  However, It is often much better during the summer.  I know I would be feeling even worse if I was having vertigo as often as I normally do.  But I can’t stop having profound fear that it will get worse any moment.  I’m having a hard time enjoying this break because I’m so terrified I’ll have an attack at any moment.

I was trying to take better care of myself, but I have to admit in the last few weeks most of that has gone out of the window.

When we are under stress it is imperative that we practice self-care.

Things I plan to do to increase my self-care:

  • Be sure to see my therapist and be open and honest during appointments.
  • Give myself a break.  This is more easily said than done, but I need to really make a conscious effort to do so.  When I have negative thoughts or feelings I want to start being more gentle with myself.
  • Meditate more.
  • Take more baths.
  • Watch funnier TV shows and/or movies.
  • Read funny or inspirational books.
  • Cuddle with my hubby.
  • Cuddle with Max (the cat) and Kiki (the little dog).
  • Eat healthier.
  • Do as much as my health will allow that makes me happy.
  • Be creative.
  • Stay in touch with those who love and nurture me.
  • Try to get outside more.
  • Keep up a gratitude list every day.
  • Laugh
  • Sing Silly Songs
  • Dance
  • Give my body 10 minutes of mindful attention.
  • Take a nap.
  • Take Deep Breaths
  • Get Positive Feedback (ask 3 friends what they love about me)
  • Write out my thoughts (for 15 minutes free write what ever I’m feeling, I can tear it up after, just get it out.)
  • Drink water (I’ve been drinking soda recently, something I haven’t done in years)

 

How do you take care of yourself?  Any self-care suggestions?  I’d love to hear them!

 

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Migraine Madness

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My migraines are never under a 6, the average is a 7.5.  10 means you go to the Emergency Room.  Unless I was dying I wouldn’t go to the ER for a migraine.  I do not think they could help, and I do not want to labeled a drug seeker.

This post is personal.  No links to studies to back up what I’m saying.  Nothing more than what is happening to me.

On March 22nd I had a migraine.  Every day since March 27th, except 1, I’ve had a migraine.  Yes, I’ve had a migraine for 43 days out of 44.

This is not a medication rebound headache.  I have not taken medication for more than 15 days in a given month.

Can you imagine the days I haven’t used medication?

When I use medication I have Maxalt, Toradol, Toradol injections, …and well that’s about it for my rescue meds.  I am on others that are supposed to help keep these buggers away, but as you can tell, it isn’t working.

I’ve gone through a DHE protocol of 3 shots for 3 days.  During this time was the day I didn’t have a migraine.  I still had a headache, but it wasn’t a migraine.

Why is this happening to me.  Well I have a guess, but I don’t really know.

After I had my seizures my Neurologist told me that Topamax can cause seizures in some people.  This medication is used to prevent migraines, but it is also used for seizures.  So the thought is that the seizure drug I was on actually caused my seizures. I was on it for a long time before I got seizures, but there was this little hiccup problem with that medication right before I started having seizures that probably caused it to go crazy.  Our mail order pharmacy didn’t fill my prescription on time.  They had a problem with the prescription and didn’t tell anyone.  Things got so crazy I was off of my med for over a week, it may have been close to 2, when I finally got my prescription I just started taking the full dose, I didn’t think about ramping up.

So I ramped down and got off the Topamax and the seizures stopped.  I was off of the Topamax for less than a month when these migraines started.  I normally have about 15 migraines a month, some months a little more.  Very few months have I had less than 15.  I used to think the Topamax didn’t do a lot to prevent my migraines, now I am pretty sure it did.  Right now I’m so ready to go back on this drug.  If I have a seizure I’ll stop it.  (I wouldn’t say this if the seizures had been hurting me, but from all the tests, the only harm they cause if the twisting of my body.)  Unfortunately, I kinda doubt my doctor will be willing to take this risk.  Maybe there will be something better.

Today my neurologist called in another medication for me.  I’m to have 2 more DHE shots and take this new medication right before I go to bed for 3 days.  (I’m sorry I don’t remember what the medication is, I’ll find out when Stuart gets home with it.)

If this new medicine regimen doesn’t work I don’t know what the doctor will do.   I’m lucky that my neurologist specializes in headaches.  She actually runs a Headache Clinic.  I’m confident we will be able to get these migraines under control.  She won’t give up.

During this past month the vertigo has showed it’s ugly head again, but not as often as I would have thought.  I do question if this vertigo was Migraine Associated Vertigo (MAV) .  I’ve had a couple of attacks of rotational vertigo (where I see the world spinning around), most has been motion vertigo (where I feel as if I’m moving but I’m not).  Rotational vertigo is by far the worse.  I had a bought of that yesterday, but it wasn’t too bad.  The world would spin for a few seconds then for hours I’d feel like I was moving or that when I moved I had absolutely no balance what so ever.  Yesterday could have been MAV, I just don’t know.  It was a very bad day.  I woke with a Migraine at 9.5 on a 0-10 scale.  This causes me a lot of stress, stress causes a Meniere’s attack, of course that causes vertigo.  I’m leaning toward Meniere’s because my hearing was way off all day.

Most of the month I’ve been having motion vertigo, this was only the 3rd time I’ve had rotational vertigo.  I’m not sure why the rotational vertigo has calmed down, but I’ll take it.

I haven’t been around so much this past week, because the pain is getting to me.  I’m falling into Migraine Madness.

So, all my ramblings lead to one thing.  My head HURTS.

Update On My treatment

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My treatment for vertigo as laid out by the doctor at John Hopkins was to continue working with my migraine doctor to get my migraines and migraine associated vertigo (MAV) under control, go to vestibular rehabilitation therapy, and to have gentimiacin injections (a medication intended to purposefully damage the inner ear to stop dizzy spells in Meniere’s disease).

As you might recall I wasn’t thrilled with the doctor I saw in our city, and was not going to allow him to do the gentimiacin injections.  However, he did send me to vestibular rehab.

I’m still seeing my migraine doctor (a neurologist who specializes in headache pain), we are working on getting the migraines under control.  I can’t say I’m having fewer migraines but they do seem to be less intense.  It’s hard for me to tell if my vertigo is caused my MAV or if it’s a Meniere’s attack.  (If the vertigo is caused by MAV then  gentimiacin will not help.)  You may recall that I had seizures in February that caused me to be hospitalized.  My neurologist told me that one of my medications, Topamax, which is actually used to control seizures, can sometimes cause seizures.  It appears this may have been my problem.  I’ve since stopped taking Topamax and the seizures have subsided.

The vestibular rehab is going well.  I haven’t been to a lot of sessions yet, but so far so good.  When he did the initial intake exam he found I have still been having symptoms of Benign Paroxysmal Positional Vertigo (BPPV), and he treated it with the Epley maneuver.  This is something that the doctors I have seen ignored, the nystagmus (involuntary movement of the eye) is very slight, and the doctors didn’t see it, however, I felt like they didn’t believe me.  (I can’t remember if I mentioned these symptoms to the doctor at John Hopkins so I can’t say he ignored them.)  After this treatment I have had very little BPPV symptoms.  On the way home from the first visit I had a bad vertigo attack that last hours.  Since then my treatments haven’t caused an increase in my symptoms after leaving. During the treatments I often get a bit overwhelmed and wonky, but Ryan watches out for this and makes me take a time out.  I still have a few sessions to go before being reevaluated.

Now, about the doctor situation.  I will be seeing a new doctor on the 22nd, next Tuesday.  It’s kind of amazing how I found this doctor.  Advanced Bionics (AB), the company who makes my cochlear implants (CI), are going to have an event talking about new products just right down the street from me on Friday.  When I was sent a notice about it I decided to email to the AB representative for our area and discuss some of my issues.  I told her about how difficult it is for me to hear on the phone and wanted to know if they had a new product to help better with that.  They don’t, but I we both think most of my troubles there is lack of practice, since she has been a speech therapist for years she gave me good exercises to try to get me used to the phone.

I decided to tell her my predicament with not being able to get my CI’s program updated (called mapping) here when I have problems, even though there is an office that provides this service.  (they will only map CI patients who were implanted by their office)  As luck would have it, her husband works for this medical group.  He is an otolaryngologist.  He is new to the office and is working to get things better there.  He gave me suggestions about things and I decided to tell them about my problems with the doctor I’ve been seeing.  He told me he would be happy to take me on as a patient, or he recommended another doctor in the group.  He just wanted me to have a good experience there.  Wow.  I decided to go to see him.  He is very willing to confer with the doctor at John Hopkins.  He is also going to work to get my CI’s mapped at that office. Their rule is so people won’t go to a hospital just a few hours away and then expect them to do the follow up work.  I think it’s more complicated than that, but that’s a big part of it.    The big issue with me is that I wasn’t living here when I was implanted so I should be able to be seen there.  Is that just a lucky thing or what?  I’m so happy I reached out to her, you never know who may be able to help.

How am I feeling about my treatment?  Good, so far.  I’ll discuss it with my new doctor, but right now I think I’m going to put off the gentimiacin injections.  I’m doing much better right now and I just don’t want to take any chances that the vertigo is coming from my migraines.  I have been thinking we may as will have the injections in the ear that registered a 4 on the caloric testing. (the normal reading is a 21).  Since it’s that far down I want to know if it could help to go ahead and do the gentimiacin. We’ll see what he says on Tuesday.

So, that’s where I’m at right now.  Very grateful everything is going so well.

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photos by W. Holcombe 2016 all rights reserved.

The Crud

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The chronically ill get sick, just like everyone else.

I have the crud.  A sniffling, sneezing, aching, coughing, stuffy-head, fever, so I can’t rest cold, and unfortunately NyQuil doen’t help.

When you have Meniere’s disease you can get really sick when there is too much fluid in your head.  I haven’t talked to anyone who has Meniere’s Disease who doesn’t have more symptoms when they have a stuffy head.  No one knows what causes the symptoms of Meniere’s one main theory is that they result from increased pressure of an abnormally large amount of endolymph (fluid) in the inner ear.  Doctor’s usually put us on a low sodium diet and often diuretics to reduce the fluid in our ears.  When anyone has a cold they have a lot of fluid building up in their head; their nose gets all stuffy, and their ears can feel full: put that in a person with Meniere’s and you have one wonky person.  Right now, I’m one of those people.

Nothing I can take can make all that fluid go away. Yes, I can take a few things to help “dry things up”. but I’m sure all of you have had a cold, and you know that no matter what you take you will feel a bit stuffy and all full in the head.

My symptoms are exacerbated.

  • My tinnitus is going crazy, as I’ve said to Stuart: “Really? You Can’t Hear That??” The noise will be so loud at times I could swear my body is vibrating with it.  Other times, the pitch is so high I will suddenly buckle over from the pain.
  • The fullness in my ears feels like there is wet cotton in there and it just keeps absorbing more and more fluid, soon it will be dripping out my ears I’m sure.  (this won’t happen unless I get a bad ear infection, it just feels like it.)
  • I feel much more dizzy and lightheaded than normal.
  • My hearing is just wrong.  I have cochlear implants, I don’t hear like other people. “Cochlear implants (CI’s) bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.” NIH Publication No. 11-4798  You wouldn’t think that I would have the same problems as other people with Meniere’s concerning hearing fluctuation and sound sensitivity, but I do.  It is much worse when I have the cold, but it happens pretty much every evening, I’ll suddenly have my hearing so all funky; I can’t understand Stuart and often things sound so loud that I have to remove my CI’s.  Thankfully, I can take them off and just hear nothing, except the tinnitus that doesn’t go way, but hearing nothing can cause other problems.  When I take off my CI’s and stop hearing anything, I can get dizzier, and feel really confused.  I don’t mean I’m confused because I can’t hear, I have severe brain fog.  If I’m reading, I often can’t comprehend what I just read.  I think this is because I notice the tinnitus so much more and it is bombarding my system.  When I’m not sick, sometimes taking my CI’s off is often a pleasant sensation, to just relax in total quiet (as long as my tinnitus is being good and staying low).  I do this every day when I meditate.
  • My oscillopcia is worse. (Oscillopsica is a visual disturbance in which objects in the visual field appear to oscillate. The severity of the effect may range from a mild blurring to rapid and periodic jumping.) It can be incapacitating, luckily mine just causes me to see things weird sometimes.  I often see things as if there is this funky shadow surrounding them, like they are slightly vibrating but I can’t really see the vibration I can only see the after image after.  It’s hard to explain.  On a good day, I don’t have this, or barely have it.  Today, I’ve had to stop writing this post many times because I am having a hard time focusing. (note, not everyone with Meniere’s has oscillopcia)
  • I think everyone has a headache when they have a cold, I don’t know if mine is worse than it used be before I got Meniere’s or not, that was a long time ago.  I know it’s worse than my persistent daily headache.  I’m at a 6 or 7 on the 0 – 10 scale all the time right now.

So far I haven’t had a full blown vertigo attack.  I keep feeling like it’s coming, but it hasn’t.  I’ve been having so many good days recently maybe this cold won’t set it off.  I do constantly feel like I’m on a boat and a bit car sick, but the full rotational vertigo has not come around.

Having a cold and Meniere’s at the same time can be challenging.

If you have Meniere’s and you feel cruddy because you have the crud, you aren’t alone.  Know that it gets better.

If you don’t have Meniere’s, now you know a bit about what people with Meniere’s go through when we have a cold. Some people have more symptoms than I listed, some people have less, but normally people with Meniere’s have their symptoms increase when they have a cold.

Today I have the crud….it just is.

My Visit to John Hopkins

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

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?

 

 

What You Shouldn’t Say To Someone Who Is Chronically Ill…and why you shouldn’t say them to me.

Shhh... photo by w. holcombe

Shhh…
photo by w. holcombe

I found a wonderful blog called Indisposed and Undiagnosed. (actually she found me first…and I’m so very happy she did!) She wrote a wonderful article about What You Shouldn’t Say To Someone Who Is Chronically Ill.  She has GREAT answers to her questions, and I think everyone should jump right over there and read her post!  She’s a fantastic writer and you will love her answers and suggestions on how to really talk to someone who is chronically ill.

Here’s her suggestions on what not to say….I wanted to list my reasons for why….

10. “It’s just a bad day”

I do have worse days than others….but it’s never, “just a bad day”.  I live with this every single day.  Even on the days I can do more, I live in constant fear that it will be stripped away.  I have to be aware that a severe vertigo attack could hit at any moment, I have to be prepared for the worse.  I know a cluster headache too could take over and have me writhing in pain, praying for death over that pain.  (they aren’t called suicide headaches for nothing!)  I also live with a chronic persistent headache that never goes away.  I’m very grateful for my better days and try to take full advantage of them…but I never have “just a bad day”.

My bad days are severe.  I can’t focus on anything.  The world spins violently.  I throw up…a lot.  I’m often in pain at a level of 9 or10 on a scale of 0-10. My bad days often end up in the ER.  These are not the days I show many people.

9. “Have you tried…” // “You should try…”

Unless you have what I have….please try not to go here.   When you do have what I have, we can compare notes, but normally I’ve tried all of that too.  However, I don’t mind talking about it….unless you are trying to sell me something, or really think what you are telling me is going to “cure” me.  There is no cure.  If you think it might relieve some of my suffering, by all means talk to me…but don’t talk down to me.

I’ve tried so much, you have no idea.  I’ve also had many reactions to things I’ve tried.  And yet, I’m still searching and trying new things.  I have to be careful, I have a lot going on, I am not going to compromise my health by trying something that my doctors don’t okay first.

8. “Come out with me and you’ll feel so much better”

This may be said with the best intentions, but I won’t feel so much better.  I might end up feeling worse. But that isn’t to say that some days I might want to get out.  Some days I really want to go out.  However, you have to be understanding if I say I have to go home…NOW!  And we would only be able to do the most gentle of outings.  In a quiet place…unless you can be very understanding about my hearing.

The thing that I’d much rather hear is…..”Would it make you feel better to get out for a while with me?”

I normally can’t go out and do much.  A visit would often be better, just sitting with me and telling me about your life would be great.

7. “At least you don’t have…”

I used to think like this, but I can’t compare how I am to others.  I am very compassionate to everyone who has any kind of illness….they have their fight…and I have mine.   I was told by my doctor when he diagnosed my vestibular illness… “I think this is one of the worst diseases that I know of that will not kill you.  However, sometimes you will probably wish it would.”   I’m not saying that for pity, it is just the way it is.  No I don’t have certain diseases that can be much worse….and I am very grateful for that.  If I sat around and only thought about…at least I don’t have ______.  It would drive me crazy with guilt for feeling any suffering over my illness, and that would be impossible.  Yet, my illness has made me much more empathetic toward others who are ill.

I must be gentle with myself, I know this is a hard road to live on, and carry on the best I can.

6. “You need to stop being so negative”

I try SO HARD not to be negative.  I try to keep…not so much a positive outlook, but a realistic outlook….and I do not sit around feeling sorry for myself.  I accept how my life is, and try to make the best of it.  Sometimes that is damn hard, and yes I can be a bit negative, I get depressed, and overwhelmed.  Wouldn’t anyone?

I don’t have many people to talk to, my dear hubby is the only person who really hears it all.  When I see friends and they ask about things, they may hear more than they want.  I don’t mean to sound negative, I’m really just telling things the way they are…just the facts.  And unfortunately, when you asked, I thought you wanted to hear about it.

Imagine if you had a stomach bug and a bad headache for over a year….wouldn’t you feel a bit negative sometimes, and need to complain to someone every now and then?  Well I’ve had a lot more than a stomach bug for and for longer than a year…understand a little?

5. “You got this because…”

I’ve heard this one a few times….I think I kind of ignore it.  I mainly hear things like this from people who are trying to sell me something to “fix” me.  Other people, I think….really?  I’ve been to how many specialist who can’t figure it out…what makes you think you know?  Now, I do hear it from people who have diseases, trying hard to figure out why they have it.  I went through that.  Why me?  Then I realized…Why not me?

What really bothers me is when I have a vertigo attack, severe migraine or really bad day and people say….”What caused it?”   Really?  Do you think if I knew that I wouldn’t avoid it?

Or they try and figure out what caused it…..Okay, yes these things can have triggers, but most of the time, I have no idea.  The only thing I have figured out that really bothers me is the weather and we sure can’t control that.

4. “So, what’s wrong again?” // “You’re still sick?”

This tells me you don’t think I really have a chronic illness that is not going away.  It tells me you don’t believe me.  It also tells me that you think I would play the “sick card” to get out of doing things with you.

Well, I am sick.  Yes, I am still sick, chronic means it is not going away.  I wish it would.  I want it to be something that I could just take a pill for and it would get better.  You probably get sick and it goes away in a little while, you have no idea what it is like to be sick all the time….and I am so very grateful that you never have to feel this way.

I hate being sick all the time.  I never know what may happen in the future, everything changes, maybe this will change, but the prognosis is that it isn’t going away.  I had to get used to it, I hope you can.

3. “You’re just exaggerating/making excuses/want attention”

I’ve never heard anyone say this to me….but I’ve been told it has been said behind my back.   Sad huh?

Well…..It hasn’t worked has it?  I’m alone most of the time.  I’m lonely.  I miss people.  If you are reading this and you think I ever did this….I promise I haven’t.  I really don’t want the kind of attention I get by being sick.  I don’t want attention from doctors, or platitudes from people.  I want to be able to have relationships where everyone feels I give as much as they do.  I want to work and play and live……just like everyone else.   But my life is different now.   It’s much different.   Some days, I’m okay with that.  Other days, it tears me apart.

Just know…..everything I say about my how I feel and about my illnesses are true.  I do not want special attention because of them.  I only want a life.

2. “But, you don’t look sick”

What exactly does sick look like?  No…really…think hard.  Of all the people you have known, all the movies you have seen with sick people, all the times you have been sick….did they all look the same?  Sick people look different.  We don’t all have sicknesses that show on the outside, all the time.

I try not to let people see me at my worst.  It scares me.  When I have a vertigo attack I am terrified, I do not want anyone near me who isn’t my husband or medically trained to see that.  I hide my pain as much as I can, if I can’t I need to be away from people.  Understand, when I’m at my worst you won’t see me, so of course, I don’t look sick when you see me.  You also have to understand, I may be gripping everything bit of will I have in my body to hold it together just so I can look good in front of you, so I can be as normal as possible for a moment, I don’t want to scare you away by looking as sick as I often feel.  I’m afraid you will never come back if I look too sick…..yet if I don’t look sick then you think I’m not…..it’s very hard to know what to do.

I usually get…..”You look so good!”  or “I’m so happy, You look Great!”  or worst  “You look like you feel so good”  ….. Most of the time this doesn’t bother me.  I don’t let a lot of people know how bad I feel.  It bothers me when someone close to me, who knows I have been having a very hard time, sees a photo of me and says one of these things….I suddenly think….Really?  You too?  You think just because I look good for this posed shot that I feel good?

1. “It’s all in your head”

I’m lucky, no one has ever said this to me.  Of course, I’m not sure if anyone has ever said it about me.

I love the answer that Indisposed and Undiagnosed gave….it is so true:
“The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).”

Be sure to go to  Indisposed and Undiagnosed and read her suggestions thing you CAN do for people with Chronic Illnesses.

I’ve decided to make that a separate post….I have a lot to say…haha

** Please note**  I do not blame any person for dropping out of my life.  It is hard to stay in touch with a chronically ill person.  Especially in the beginning when they are so hurt and it is so consuming.  After that, it is even harder to come back in.  Life changes, I understand that.  For those who may want to communicate with me on any level, I welcome you.  Being chronically ill and mostly housebound is a lonely life sometimes.