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.

I have a confession…

For over a year I have been clinically depressed.  I have had some small doses of mania in there, but mostly I have been shrouded in a black cloth with no hope of seeing the light.

photo by click tongue, at deviant art.com
photo by click tongue, at deviant art.com

I realize now that my psychiatrist was going through some issues of his own, and didn’t pick up on the fact that my depression was more than what I should have felt.  At one point he told me that he felt like he had done all he could for me and I should see someone else, I could not hear that he was looking out for me, I only heard that I was losing something else in my life.  He had been my doctor for close to 12 years, I felt I was just being tossed away.  So, I ended up staying with him.  It eased my mind, but didn’t make me better.  Yes, I had many things happen that gave me a reason to be depressed, but not as depressed as I was.  I wasn’t acting like me.  I really don’t remember much about 2012, I remember some horrible highlights, but not the good moments.  We all know, that is not me.  I normally cherish every moment I can, and look at things realistically, not escalate them to the point that I can’t see past the hurt.

The mania manifested itself as anger.  I was so angry at times, and I had no control over it.  I hate that Stuart was the one who had to be on the receiving end of all this emotional turmoil.

In 2012 and part of 2013 I cried every day.  Yes, part of it was losing Sandy, but it started before that.  I think the catalyst that started all of this was my diagnosis of Idiopathic Intracranial Hypertension (IIH).   I finally knew I would never get back to the point I was at the year before.  I would never feel “normal”.  There were a lot of emotions that went with this, a lot of realized loses.  I never expected to become a completely “healthy” person.  I’ve never been one, why would that change now?  But something snapped, and I no longer felt as positive as I had.  My new psychiatrist thinks my medication had not been working as well as it should even before then, but I was handling what was coming my way.  The diagnosis just pushed me past the point of helping myself.

I won’t go into everything that happened to me last year.  I will say there were some major things that I simply could not deal with.  However, I didn’t realize it then, I thought I was doing rather well on most accounts.  I knew there was one thing that was eating me up and sent me spiraling out of control….  I posted a poem about family.  How I wasn’t very close to my biological family and I was so happy I had a family with Stuart.  I was not saying it was anyone’s fault that my family and I don’t see eye to eye, it was really more about my love for my chosen family.  Well, a member of my family saw it and sent me a comment out of the blue.  This is someone I used to be VERY close to, but now she hates me and slanders my name to anyone who will listen.  I have not heard from her for about 10 years, yet she says my friends here don’t know me.  She says I’m evil….ect.  I never expected to hear from her again, but there it was, a comment from my niece.  She is 3o years old and still holds a grudge over something.  I don’t know what, and no one will tell me.  I have a feeling it is something from my very unstable Bipolar days, but I don’t remember most of that.  I was literally a different person while that disease had hold of me.

Now I have a new psychiatrist, and after one visit I felt like a weight had been lifted off of me.  I felt validated.  She understood my illnesses without me having to explain them.  She saw I have IIH and immediately said, “You can’t even exercise.”   THANK YOU!   Other doctors have said, “if you could exercise”…..blah, blah,blah.  It makes it sound like I choose not to exercise.  Not that I really can’t.  I will have excruciating pain, and will pass out.  I have figured out ways to do some weight-bearing exercises.  But I have to go slow.  I cannot do cardio, if my heart rate gets to high, I’m out.  She increased one of my medications.  And I am feeling better, but I think it needs to go up a little bit more.

However, I am seeing the light at the end of the tunnel.  Right now it’s just a little candle, but it’s leading me out of the dark.

light at the end of the tunnel....photo from deviantart.com by zoop zoop
light at the end of the tunnel….photo from deviantart.com by zoop zoop

I have good thoughts again.  I am not crying every day.  My anger is much more under control. (I know my husband is very happy about all of this.)  In short, I’m feeling more like me.

I appreciate what I have.  Even when I’m stuck in a dark, silent room because of my migraines I am grateful I can get out of the light, and have a roof over my head.  When the world is spinning and I feel like my stomach is going to come out of my mouth, I am grateful I have a safe place where I can ride out the storm.  I may not be able to walk unaided most of the time, so I’m very grateful for my spiffy red walker, that is also a seat.

I’m grateful for my dear friends who read my rantings and support me so much.

This past Tuesday was my birthday.  I received more birthday cards than I think I ever have since I’ve become an adult.  Some made me cry (in a good way), some made me smile and feel all warm inside.  One I don’t believe the sender was thinking, or perhaps they don’t realize my hearing limitations, it played music.  I can’t understand music.  Stuart had to tell me it played Happy Birthday.  *funny*   He thought it was rude, I really think it was just a matter of not understanding.  Or wishful thinking.