What’s going on with me?

I know you are asking “What is going on with Wendy?”, she wrote a post about how much better she was feeling emotionally and then she just disappeared.  What? It wasn’t that long ago?  Wow, it feels as if so much time has passed since my last post!

So much has happened.  Last Thursday (I think that’s right, I’ve lost track of time) I had a bad asthma attack and was told by the doctor to come in NOW!, then when they saw me she said, if this happens again, go straight to the emergency room!  Asthma can be one bad mother! (pardon my words, but I was thinking worse…this whole thing with my asthma suddenly getting worse after so many years, well I’m just ticked off about it!)

Want to help someone with Asthma? Please do not wear perfume to the doctor's office. image by Ryan O'reilly at Deviant art
Want to help someone with Asthma? Please do not wear perfume to the doctor’s office.
image by Ryan O’reilly at Deviant art

The real kicker of the whole situation is that I wasn’t that bad at home when we called the doctor, I just hadn’t been able to sleep because of coughing all night.  Then on the way to the doctor we passed someone mowing grass, and I started to wheeze.  I could feel the left side just close up.  I used my inhaler…again….and again.  Stuart said, do you want to go to the Emergency Room, I said no.  Then shortly afterward I croaked out “E…R…”, but then the inhaler started to work and I could breathe again.  So we just went to my doctor’s office.  Unfortunately my doctor wasn’t there and I had to see someone else.  She doesn’t know me.  I do not get anxious when things like this happen. (I get more pissed than anything, I admit I did get a bit anxious when I thought I needed to go to the ER, I hate going there, but that ended as soon as I started to breathe again.)  I’ve had enough happen to me, I stay calm and make decisions on how to handle it.  She thought my “anxiety” was making it much worse, and she’s not the kind of doctor you can explain things like that to.  She would listen, but she would still think she was right.

I saw my doctor on Tuesday, and she agreed, I’m not likely to have anxiety about these things.  And we discussed what type of specialist I should go to, an allergist, a pulmonologist (lung doctor), or an ENT.  We decided on the ENT because I’m having a lot of drainage from my sinuses too.  We figured he may be able to fix that, and if he couldn’t help with the asthma, he could recommend someone in at Duke.  I know you are all thinking I already have an ENT because of my ear troubles, but my ear doc, is just that, he specializes in ears.  He’s an otologist, just ears.  However, we are getting a recommendation from him to see someone in his group.  She wrote me a prescription for a cough suppressant to take at night so I could get some sleep.  Unfortunately, it has high fructose corn syrup in it, not something I can take!  So she recommended Chlor-trimeton, an over the counter antihistamine that is very drying.  Finally, I have been able to sleep with minimal coughing during the night!  I was so sleep deprived I was loopy.

One day…about a week ago now, I fell.  This time I fell into the wall.  Not thinking it was a big deal, I didn’t even hit the floor, but I jammed my arm.  So typing is a bit difficult.  I have to put heat on it and stretch it and mainly just let it heal.  So I won’t be typing a whole lot…it’s hard to do with just the left hand.  I do sneak in there with the right hand, but then my arm aches for a long time.

Oops, I fell, again!  I went to the bathroom and started to spin (the vertigo has been back with a vengeance this past week!), I called out for Stuart but he didn’t hear me.  So I tried to get to the bed as quickly as I could.  I hate ending up on the hard bathroom floor when I’m spinning for hours.  I almost made it.  My walker was near the bed and I went to grab it, but missed (the handles weren’t where my eyes said they were), and I went down.  The front of me mostly landed on the bed, but my knees came down hard.  They hurt for a bit, much like when you fall when you’re a kid.  No biggie, but I’m tired of falling.

Image by Wendy Holcombe
Image by Wendy Holcombe

I’ve had 3 bad vertigo attacks this week!  This week!!!  Since my surgeries I’ve been averaging about 5 a year.  I will have little mini attacks more often, but I think they are more migraine related.  So THREE in one week is unheard of for me now.  But I have found something out about myself.  I don’t panic as much anymore.  (well I started to panic during the one yesterday, it has just been happening so often!  And this one just didn’t want to end.)  However, I’m happy to say, for the most part, I have remained calm.  I tell myself over and over, “it’s not real!”  I also stare at something close to me, often with one eye shut…it seems to help.  I will put my hand on that focal point (usually a cup) and tell myself, “you know your hand isn’t moving so the motion is not real, it will go away!”   I’m also very lucky that I now have Phenergan injections that Stuart can give me.  My migraine doctor wrote the prescription for it, and it has helped a lot.  I still get very nauseous, and some times I feel I might throw up (especially if I look away from my focal point that is close to me, seeing the room…the world…spin is much harder to deal with.) but for the most part I’m not throwing up as much during attacks, or during migraines….yay!  So to sum up, I’ve been having more attacks, but I’m proud I have been handling them better!

The attack last night was strange.  I’ve only had one other attack like it.  I had the spinning and then I just fell asleep.  I woke up a little over an hour later and the room was spinning.  That just isn’t fair!  I told Stuart, that’s against the rules.  When you have vertigo and it finally slows enough that you are just exhausted and pass out asleep, you are not supposed to wake up having vertigo.  At least it was slow moving…but it lasted over an hour longer.  That’s the part I didn’t handle very well.  It’s just against the rules!!

As you can see there’s been a lot going on, and I didn’t even mention it all.

Here’s the highlights….

  • Asthma is better, but not controlled.  Need to see specialist.
  • Meniere’s attacks have increased, but I’m handling them better.  (may be caused from lack of sleep due to asthma)
  • Migraines have been intense, but mostly short-lived.  Coughing raises my CSF pressure, so these types of headaches are expected.
  • Still need to go to cardiologist to find out about palpitations.  (that is rapid heart rate, right?)  I haven’t had this happen since March.  (I have an appointment with him on August 2nd.  Funny thing, it’s Dr. Gray’s husband….if you remember she’s my neuroradiologist who diagnosed me with Idiopathic Intracranial Hypertension.
  • Still waiting on insurance to approve second CI, but they wouldn’t operate on me right now anyway.  Not with uncontrolled asthma.
  • Stuart is still not working.  He is looking into going back to school for Medical Informatics.  (I told him he made up that word, but it’s real…I’m so behind the times.)  He would also be working, but things will be tight for a few years.


To find out more about asthma please click on this picture, or search the internet.

Yes, I am coughing a lot again.  I’ve been coughing for quite some time, it got better, but it has gotten worse again.  So much so I had a hard time swallowing because my throat has been so raw.

It started getting worse on Friday, I saw the doctor yesterday.  She says my Asthma is not uncontrolled.  So I’m on a different inhaler for a while, she said I’d probably start to feel better in about 4 days, I know I slept better last night. Thank goodness.

This issue has been causing a lot of symptoms that we thought were from my other illnesses.  I have not been getting enough oxygen, they tested it yesterday and it was at 95%, not bad, but not great…..and I wasn’t having an attack, so my oxygen levels will drop a lot during those times.  I was also given another test…and frankly I’m not sure what it was called, I had a hard time hearing the doctor, her frequency just wasn’t hitting right.  Anyways, the test showed how much air you can expel when you blow out as hard as you can.  It was supposed to read 380, the highest I could get it was 300, I had to blow 3 times, and I almost passed out.

So what does this mean?  Not getting enough oxygen, and not having my lungs working properly can be causing a lot of my dizziness lately.  Especially when I go from sitting to standing.   I was getting worried because I can’t walk from one room to the other without getting winded and the room starts to move.  I thought the getting winded was because I can’t really do cardio, it hurts my head too much….it raises my CSF pressure.  But now I found out that I’m getting winded so easily because I’m not getting enough oxygen. I also found out this is probably why I’m so exhausted and lethargic all the time.  I sleep so much, and have no energy to do much of anything except maybe watch TV, and sometimes read.  But reading takes comprehension and recall, things I simply haven’t had lately.

Having your oxygen levels just a little bit lower than it should be can really cause havoc.   I knew my mother was going through a lot when she had lung cancer, and her oxygen levels were low, but I feel so much more for what she had to put up with.  I remember the insurance company not wanting to pay for my mother to have oxygen at home…I don’t remember what level they said she had to have but her’s wasn’t low enough.  I can’t imagine losing any more breath than I have and being told I can’t get help.  Luckily her doctor called the insurance company and wanted to know how they could say what her patient needed when they aren’t doctors and haven’t examined her.  She demanded that my mother get oxygen, and she did.   I was impressed with her doctor for that…for some other things, well she took good care of my mother, but she did not handle things well.    But that’s for another rant sometime.

So my dear friends, I haven’t meant to stay away so long, or so often.  I simply haven’t had the energy.  For example, today I woke around 11am, I went back to sleep about 1pm, I woke coughing and sick to my stomach about 3:30pm….it’s now 5pm.  It’s the end of the day for most people, and I’ve only been awake for a total of 3 1/2 hours.  I will probably stay awake for a few more hours, but I’ll be asleep by 11pm at the latest.  You can do the math to see how many waking hours I will have today, it’s too hard for me to think that much.

Update on other things. My darling hubby hasn’t found a job, but he has a phone interview tomorrow, and he had a long talk with a recruiter today (they really think he’d be “perfect” for that job, but we’d have to move to Nashville….if he thinks he’ll be happy, I’ll live anywhere.   The big worry he has is leaving me alone all day.  He’s worked at home for years now, even before I got sick.  I think it will be good for him to get out and go to an office…..I’ll be fine, or I’ll hire someone to come stay with me. Another big worry about Nashville…my doctor’s aren’t there.   I’d have to try to find a Neurologist that’s a headache pain specialist because I have to get the Botox shots every 3 months, and I can’t see Stuart taking a day off every 3 months to bring me to Durham.  I’d keep my ear doc, after having the second CI implant…..(I still don’t know when, I’ve had to cancel many appointments with him..dang-it.)…I won’t have to see him very often unless something goes wrong.  And it just won’t…enough of that!

I mentioned the Botox shots, I got my happy little Botox bee stings on the 7th, and I’m a happy camper!  Oh my goodness those things sure do make a difference.  I’ve gone from having pretty much, NO, pain free days, to mostly pain free or very low pain days.   I’m not afraid I’m going to run out of medication, so I take it earlier and abort the migraine before it takes hold and ruins my life. My doctor also prescribed an NSAID shot that Stuart can give me if I have a really bad headache or have one that last more days.  That makes me feel good to know that it’s available.  She also prescribed a muscle relaxer….after I asked about it….I feel that my migraines last longer because I tighten up so much during it and just can loosen up even after I’ve taken my migraine meds.  She said they do often use that as a cocktail to help.  And it has helped!   I can’t take pain medication any longer…..unless I want to itch for at least a day.  For some reason, I’ve become very sensitive to pain medication.  We’ve pretty much tried them all, but since they are mostly all opioids I’m having a lot of the same problems with all of them.   And I can’t take NSAIDs by mouth, my tummy does not like them!  So that put a big dent in how I could fight my migraines.  Now I feel we are on the right track.  I hope the Botox last a good while….I don’t want to be bombarded with migraines before it’s time to visit the Botox Bees.

There we have it, an update on my little family……oh Max is doing fine, right now he’s trying to push my laptop off my lap.  He loves me so much more when I’m doing something.