Tag: idiopathic intracranial hypertention

Nothing is working

On By WendyIn Chronic Illness, Migraines11 Comments
Photo by Anna Shvets on Pexels.com

Last I was here, a loooong time ago, I mentioned all the new things I’m trying, or would be trying. Well, nothing is working to get rid of this migraine. Some of the devices (Nerivio and Ceflay) help reduce it so I am somewhat able to do things on better days, but they never take it away.

I had my Vyepti infusion on the 26th, I should have seen progress within the first week, unfortunately there has been no change. I still have this migraine I’ve had for MONTHS now. Some days it’s a little better, many days I just want to rip my head off. The pain really gets to you, especially when it’s accompanied by other symptoms that aren’t so pleasant. The light sensitivity is especially hard for me, I feel like I’m living in the dark all the time, if I’m not in the dark I’m wishing I was. I live in the desert, it’s friggin’ bright here! And the heat! Last two months have been the hottest on record, thankfully it’s starting to cool down a bit, we’ve had some days that have been in the 80’s this week. Yay! I’m finding that bright light and heat are a trigger for me. Or maybe it’s just because I have a migraine that WILL NOT STOP!

So I wrote my neurologist (who is a headache specialist) and asked about two things. I wanted to know if I haven’t seen results from the Vyepti by now would it be worth trying the higher dose. I also asked about a new symptom (I’m having some weird headache pain when I turn over in bed at night my head will suddenly explode in severe pain. It feels a lot like when I was having Idiopatic Intracranial Hypertension, but I’m not getting symptoms when I’m horizontal or vertical. (normally when you have intracranial hypertension the pain is much worse when you are lying down and relieved when you sit up, if your cerebral spinal fluid is low then you have pain when you are up and not when you lie down). In closing I asked her if she had any recommendations.

I received an answer that was disturbing. 

"1. so any new headache as you might imagine I cannot assess by email. I would need to see you in person to really thoroughly discuss and evaluate. We can set an appointment but I am taking off a week at the end of the month and have surgery so my schedule is a little bit messed up 2. We can certainly try the 300 mg however it is not covered by any insurance and statistically it was not that much better than 100 mg so unfortunately it would probably be a cash pay situation which I would not suggest. However overall I would have expected some benefit by now. 3. Next option would be to get another opinion unfortunately best next opinion in my opinion would be in San Diego"

My response to that, which I haven’t sent, is 1. I already have an appointment set up for October 7th, I doubt I can get in before then; even when she doesn’t have all these things it’s impossible to get in to see her in a timely manner. I sure hope this new headache isn’t anything serious. 2. Well no I don’t want to try the higher dose under those circumstances. and 3. Well it’s obvious I’m beyond her capabilities. I understand how frustrated she may be but, San Diego?!?! That is over 6 hours away from here! I do not understand why there isn’t anything at Mayo, it’s just a couple of hours from here. I am willing to go anywhere but not when my husband doesn’t have a job, and often insurance companies won’t pay for treatment out of state unless it’s an emergency. I tried to go to a doctor in San Diego before and my insurance would not approve it. Perhaps if my doctor here is sending me it would be different? Who knows, my insurance can take months to decide things anyway.

Stuart still doesn’t have employment. He did have a very encouraging interview, so we are hopeful, but who knows. It’s a big pay cut if he gets it, but it’s much better than nothing., and it’s easier to look for a job when you have one. We are doing okay financially, but going to San Diego right now isn’t possible, and when he gets a new job I can’t ask him to take time off to cart me to a different state for treatment. I’m hoping when he gets a new job that we have better insurance. The one we have now is a pain to deal with. It was much easier with Blue Cross. Not that any insurance company is great. I’m so grateful I have Medicare to supplement my private insurance.

I’m so discouraged. It seems like any treatment I’ve gotten for my pain hasn’t worked. My pain management doctor tried injections in my neck and it didn’t work. I can’t take most things they give people for pain. I can’t take opioids, they make me itch like crazy! I can’t take NSAIDS because they eat up my stomach. I started a new medication, Low Dose Naltrexon. With this medication I probably won’t see any effect for months. We’ll see, but after everything, I don’t have a lot of hope. (this is the same medication they use to help with opioid addiction, but at a much higher dose. You can read more about LDN on the LDN Research Trust site.

I realized the other day just how long I’ve been dealing with being sick. I’ve basically been sick most of my life, but things got much worse in 2001, that’s when the Meniere’s disease started getting worse and basically consumed my life. In 2008 I stated seeing new doctors at Duke and they told me I was disabled, from both the Meniere’s and my chronic migraines. It took me until 2015 to accept that and actually file for disability. I just realized though how many treatments I’ve tried to help me, and how long of a fight it has been. 19 years I’ve been dealing with being severely chronically ill. I’ve been ill for basically my whole life, but it wasn’t severe until 2001, it was at that time that I had to stop working full time, it wasn’t long after that that I had to quit working all together. I’m so extremely lucky that I was able to not work.

I’m still trying a few things, I’m seeing an allergist next week, maybe some of my migraines are coming from that. Stuart is going to call the doctor in San Diego and see if they have virtual visits, how the insurance works, how they treat intractable migraines, and if there is a patient portal or email so I can communicate with them directly. Then he is going to call Mayo with the same questions and see how different it is.

This is getting long and I feel like I’m just whining. I don’t mean to be. I realize that when you have a chronic illness you end up having to grieve over and over, every time there is a loss. Having my doctor tell me she can’t help is a huge thing I have to accept. I have to accept that no one may be able to help. Right now I’m just trying to survive with a status migraine (formerly called an intractable migraine) and increased Meniere’s attacks (a lot more vertigo, hearing changes, even with my cochlear implants, and the feeling of fullness in my ears.

One day at a time.

What’s going on with me?

On By WendyIn Chronic Illness13 Comments

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.

Me So Stoopid!

On By WendyIn Chronic Illness, Headaches6 Comments

I know I’m having a hard time with cognitive issues lately.  I can’t remember a lot, and there are times I’m just confused.   I should have taken precautions because of this…but I didn’t even think about it.

I goofed on my medication.  Don’t say it…I do have a medicine box….and Stuart fills it for me lately because I’m so wonky in the head, however, I always take my Diamox (the medicine that keeps my CSF lower) at a different time than the rest of my meds.  I take one as soon as I wake up, even if I’m going back to sleep, I need to keep the night and morning dose less than 10 hours apart.  I also take my night dose just as I’m going to go to sleep…..again to keep not too many hours between them.  If I don’t I get a blinding headache when I wake up.  I also take one in the afternoon….I don’t take any other med in the afternoon, so I don’t have a 3 slot box….just AM and PM.   (I hope that makes sense)

OH, I should say….I take one in the AM, one in the afternoon, and 2 at night.  (the 2 at night helps stop the headache thing)

Well yesterday, and I’m not sure I didn’t mess up the night before too….I just don’t know, I tell you I’m confused…and it’s worse now.  But, yesterday morning I took 2 instead of 1…..my CSF (cerebrospinal fluid) dropped, too low.   So I stayed in bed lying flat trying to keep my pressure as even as I could.  Not a good day.  I did not take my afternoon dose, and I thought that would be it.  I went one over, so taking one less should make it right.  Ummmm, nope.   I took 2 at bed time, and I got so sick!  I had a headache at an 8 on a scale of 1 – 10.  Luckily, my migraine meds and ice on my head lessened the headache…but I was swimmy headed (as my mother used to say), and very nauseous.  And so confused.  I will lie here and think, “why am I here?, what am I supposed to be doing?, why does my head hurt?  why is the roaring in my ears so LOUD?…”  I start to get to get all teary because I’m just so off…..it’s very hard to explain.  I feel lost and very anxious about it.

Description from confusedcartoon.blogspot.com These cartoon cats are looks confused. One of them said that " I'm just so confused". Their faces are really crazy as funny cartoon faces.
image from, http://confusedcartoon.blogspot.com/

This morning I woke up and felt great!  For the first time in months.  Stuart was still asleep and I actually pondered going downstairs and making him breakfast, but didn’t know when he’d wake and wanted him to sleep as long as he could….he’s been feeling a bit run down…I wonder why?   Then I got up!  Oh no, I would not be trying to navigate the stairs today, I wouldn’t be doing much, but lying flat….again.  Damn.  I was so happy when I woke up, but that bubble busted pretty fast.  I was so ticked off, then Stuart pointed out….how many days have you woken up feeling good lately?  None….for a LONG time.  So even that is a victory.  We’ll get this medication mix up straightened out.  (he will be giving me that medication from now on, or until I stop feeling so wonky in the head anyway.)

FYI – Speaking of Stuart…..he has had one or two phone interviews and has more lined up….and possibly an in person interview soon.  Most local.  I don’t think we will have to move…but if we do, we’ll handle it.  As long as we’re together.

Grateful during a Rough Year

On By WendyIn Chronic Illness12 Comments

Buddha, by Wendy Holcombe
So much to be grateful for…

Yesterday Stuart and I were talking and I told him I was grateful for many things this year.  He looked at me a but stunned.  Yes, it’s been a rough year.

  • I was diagnosed with Idiopathic Intercranial Hypertension, this knocked me off my feet for a while, and I got a bit depressed over it…but I’m so very grateful that the medication works!
  • I’m still having severe vertigo attacks….but I’ve only had 3 or 4 this year…That’s amazing, and something to be grateful for!
  • I have migraines, and migraine associated vertigo – I’m grateful I have a super doctor now who specializes in headaches.  I’m also grateful that the vertigo I have with migraines, is not as severe as the Meniere’s vertigo.
  • I lost my dearest companion of 19 years….I still miss my Sandy so much every day – but I’m so grateful she did not suffer, and I’m grateful for all the wonderful memories I have of our lives together.  “Everybody Loved Sandy”
  • I’m grateful my father pulled through a near death experience, and my sister was there to help him.
  • I had a very hard time after someone wrote me a note that simply shook my world, and not in a good way.  I’m grateful (thanks to studying Buddhism) I can breathe in that hate, and breathe out happiness and love toward others.  I’m also grateful that I do not have to send a reply.  It’s a rough thing to accept, but some people will not like me, may even hate me, but as long as I still like me, I’m ok.
  • I lost my hearing in my left ear as of July last year (2011), and have greatly reduced hearing in my right ear.  I’m very grateful for modern technology, with my cochlear implant (received July of this year) and hearing aid I can hear.  I may not be able to hear as well, but with the help of technology I am not deaf all the time.  I’m so very grateful for this!
  • (**a TMI note)  I was diagnosed with vulvar vulvodynia, a painful condition of the vulvar region.  I’m so grateful that my doctor gave me topical Lidocaine, now my husband and I can have relations with much less pain.  (thank goodness there are times my head stops spinning long enough to try this.)  : )
  • I’m grateful we were able to come to Tucson for the winter.  The trip out was not as hard as I expected….Thank Goodness.  The time we’ve been here so far has been rough, but I have faith I will feel better and better.  I’m so grateful for the beautiful weather we’ve had so far.
  • With every challenge I’ve been through this year….and I haven’t mentioned them all….I’m so grateful my husband has been right beside me, holding my hand, being the best advocate for me (he has to make many calls for me since I can’t hear on the phone, he’s a wonder at making doctors understand), he loves me, and thinks I’m so very special.  I tear up just thinking about how very lucky I am to have married this wonderful man.  (I am most grateful for my husband and our relationship.)

Stuart and me, a couple of years ago.
Every time I look at this photo I can feel the love pour over me.
I’m so very grateful for the love my husband shows me. (photo by Jenn Dorff)

  • And last but not least, I’m grateful for my friends.  Especially the special people I’ve met through this blog and others.  It makes me sad that others have to go through chronic illnesses with pain and suffering, but I’m grateful we can share our experiences with each other and know we are not alone.

There are many other things I could list that I’m grateful for but this post would be very long indeed.  This post has made my lightened my heart and helped with things I was coming more and more depressed about, I believe I should take the time to notice the things I’m grateful for much more often.

If you are in the US, may you have a safe and joyous Thanksgiving.  (remember, take care of yourself first.)  I was not able to partake in the family festivities today, a migraine and unsteadiness simply would not allow it.  (especially with all the noise, I admit I was afraid, this would have been the first get together since I got my CI, it’s scary going into a situation with a lot of noise when you can’t hear like you used to.)

May we all remember to take time to think about the things for which we are grateful.

Migraines, Vertigo, Disequilibrium, Pain – mix and repeat often

On By WendyIn Chronic Illness, CSF, Meniere's Disease, Pain12 Comments

Where have I been you ask?  Or perhaps you haven’t noticed (don’t tell me, I want to think I was missed) I haven’t been commenting as much on other blogs, or chatting away on mine (I know for a while I’ve been a little silent here so you probably didn’t notice), I haven’t even been able to answer emails in a timely manner.  I logged on today and I had over 230+ emails in my inbox.  Normally there are about 30…so how many days has it been??

I’ve been much sicker, if that’s the word to use, lately.  I’m not really sick, it’s my chronic stuff, plus a little oops added in. First I’ll tell about my oops.

I know in my last post 30 things you may not know….. I mentioned how hard it is for me to wash my hair.  It’s normally easier in the bathtub than the shower (I’ve fallen too many times in the shower), but I’ve decided that my bathtub is evil.  I’ve had heart palpitations in the tub and nearly passed out, I’ve slipped a few times trying to get out, once I smacked my head against the wall.  My latest fight with the tub?  I pulled the tendons in my left ankle, and knocked everything out of whack on that side from my foot to my lower back, while I was lying in the tub.  Yes, I said, LYING IN THE TUB!  Only me right?  Ok, it was a little more than just lying still.  I had scooted down in the tub to rinse my hair, then I pushed with my feet to scoot up – my left foot slipped and went in a direction it shouldn’t have.  But I must say, it really didn’t hurt. When I got out of the tub I could stand fine as long as I didn’t go up on my toes.  So I’m thinking, no big deal.  Then Stuart looked at my ankle and said, “Oh My!”.   My ankle was very swollen!!  My lower back hurt, but my ankle really didn’t.  If you touched the swollen area it hurt, but not much.  This happened last Friday night.  On Wednesday the swelling was down and I had a massage, she helped the leg and back, but last night my ankle was swollen again.   (not that I’ve been on it, I had vertigo all day yesterday so I was in the bed.)  So now you know.  I am afraid of my tub and shower….makes it pretty hard to keep up personal hygiene, but I manage….thanks to that darling man of mine.

What else had been causing me frustration and just plan fear lately?  I was supposed to have the Botox shots for my migraines on the 18th, my doctor was sick and they had to reschedule….they wanted to make the appointment in November!  We are leaving for Tucson, AZ the last week on October, we won’t be here in November.  So they scheduled it for October 20th…I cried.  I had the worst time with migraines this past month.  Right before my period started the pain started…they gave me special medication for that time of the month, it didn’t work.  I had 15 days out of 20 were spent in a dark room, often without any hearing device on because the light and sound would make me throw up.  Throw in some vertigo, and we have a great party going on.  Luckily, the appointment has just been changed to October 3rd.  This should be during my period, so it will be a real test.  Big problem now?  If it works I need to have another shot regimen in 3 months, we won’t be here.  I’m not sure I can find a neurologist in Tucson who would be willing to see me just once to give me Botox injections.  Actually, I doubt I will be able to, so it will be more like 5 months between injections.

Recently I’ve been having more vertigo, and constant disequilibrium.  Frankly, it scares me.  I’m pretty sure some of this is Cerebrospinal Fluid Pressure.  We changed my medication that controls the high pressure to a times released form instead of the kind I have to take numerous times a day (I kept missing one).  Since I’ve been on this new version of this medication I’ve been having symptoms like I did when my pressure was too low.  I started back on the regular form of the medication yesterday, I hope this really is what’s wrong.  Because the vertigo is scary.  I’m proud of myself about how much better I’m dealing with it.  I don’t panic as much, I’m sure I would if it was a severe attack.  My biggest fear I have is that when a severe attack hits it will never end.   I’ll give you an example of my days…Yesterday I woke up to the word spinning, slowly, but still spinning…this went on all day.  Luckily, I was able to sleep through some of it.  Then when it actually got to be bedtime, I couldn’t sleep.  So many things going through my head.  I kept thinking, something doesn’t add up….but I’m not sure what…at least I finished Uncle Tom’s Cabin…and still laid awake until 5am.  Today, I’m not spinning, but I can’t walk straight.  I can’t move my head at a normal speed or I will fall down from the disequilibrium.  In the past 48 hours, I’ve been to the bathroom once unaided.

OK…I know this is another venting post.  But I’m scared.  What if the change in medication doesn’t work?  Then why is this happening?  We’ll figure it out, or I’ll learn to live with it!  Right?

The other night I was talking to Stuart and told him that sometimes I envy people who don’t have to feel like I do.  Of course, he said that’s natural, part of self-preservation and all that….  I then told him, I would gladly be the only person in the world who had to feel this way if no one else ever did.  And I mean it.  The thought that others go through this is heart breaking to me.

The Lorax
photo from smh.com.au

I do have some good news about my hearing!  (unfortunately I had to cancel the last 3 appointments I’ve had with my audiologist because I was too ill to go, so I can’t tell you what she has to say, but I have some Wow! news.)  Stuart got The Lorax DVD from Netflix and we curled up in bed and watched it on the computer.   I used the direct link cable and linked the computer sound up to my processor.  I didn’t expect to hear any better than I hear the TV, I thought I’d mostly read the movie, as usual (thank goodness for closed captioning!), but this was different!  I heard the movie!!  I heard the characters the way they were supposed to sound!  I really heard it all, just right!  Isn’t that amazing?  That gives me hope that one day my CI will give me sounds that are normal.  Right now, I hear better with it than my hearing aid, but sounds are a bit off, however, I understand things more.  It’s coming along!  And The Lorax is my new best friend!

 

Cochlear Implant coming soon….

On By WendyIn Chronic Illness9 Comments

On May 1st, I saw the audiologist and ear doctor and as my ear doctor said…..”Your hearing sucks!”

On my hearing tests the word recognition in my left ear was again 0%, and the right ear was 28%.   So it’s pretty obvious I don’t understand a lot of what’s being said.

On Friday, May 4th, I had the official hearing test to determine if I am a candidate for a Cochlear Implant.   Yes!  I am!!

Advanced Bionics – Harmony- Cochlear Implant.

Next step.  Insurance authorization.  It can take 4-6 weeks.  During this time I need to decide which device I want (there are 3 available, and each have some pros and cons…so a lot of reading and research).  Also, during this time I need to think of any questions I may have, and be prepared to ask them all.  However, I understand the surgery, how the cochlear implant works, how I’ll be hearing differently, and most everything I can think of right now.  I’m sure questions will arise though.

After the insurance approves everything, we just have to schedule the surgery…and it’s go.

About 2 weeks after surgery they will turn the device on.  I’ve been warned I may not hear much at first.  As time goes on my doctor thinks I will hear better and better.  If after a few months I feel I’m hearing better out of my left ear than my right, it is a VERY big possibility that by the end of this year I may be getting a second CI.   They say if you need 2 it’s better to get them close together if possible.

I was told that I am in a good place about all of this, I’ve only recently lost my hearing and people who get CI’s who recently lost their hearing normally do much better.

Right now, I’m excited at the possibility of hearing again…but cautious.   I know hearing through a CI is not the same as hearing normally.  I understand all surgery carries some risk.   So naturally I’m cautious.

But how would you feel if you were told that in just a couple of months you could go from 0% word recognition, to hearing again.   Yes, I know I may not understand everything in the beginning…heck, I may not understand anything….but it will come.  I will be able to hear again.

**In other news about me……   The migraines are so much better!!!  I had another round of steroids, and hopefully they have stopped the cycle.   (There is some doubt right now that I have Intracranical Hypertension.  If I do, it has not escalated, and the medication that should help didn’t help much.  The migraine treatments have helped much more.  My last lumbar puncture did show high CSF, but not very high.  Actually, it was pretty low in comparison to most people who have IH…..so we don’t have to worry about a shunt any time soon, hopefully, never!)

Word Cloud – #HAWMC 30

On By WendyIn Chronic Illness2 Comments

Today’s Prompt:  Word Cloud. Make a word cloud or tree with a list of words that come to mind when you think about your blog, health, or interests. Use a thesaurus to make the branches of your “tree” extend further. http://www.wordle.net/

I did a little bit of a different take on this prompt.  I hope you like it.

Word Cloud Collage by W. Holcombe 2012, April

5 challenges, 5 small victories #HAWMC Day 27

On By WendyIn Chronic Illness7 Comments

Prompt for today:  5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

I think this is a very good prompt, and normally I’d be able to write it very easily, but the depression I’m feeling right now will make this more difficult.  (yes depression, but it’s deserved, I’m not clinically depressed at the moment.  I’ve had a lot to deal with, and the loss of a loved one, so I’m depressed.  Please no worries about my sanity. *smiles*)

A Difficult Challenge - Deciding on treatments.

5 Challenges – 5 Most Difficult Parts of My Health Focus

  1. The constant changing.  Things seem to be settling down, and wham I either get new symptoms or a whole new diagnosis.
  2. Making hard decisions.  Do I get the surgery that may help?  Do I try to live in the deaf world?  Do I take this drug even though it has some harsh side effects?  Do I get another opinion…..
  3. Keeping Positive.  OK, I’m not doing this very well right now, but it will get better.  I know it will.  (there see still positive! I just think it will take longer this time.)
  4. Risking leaving home.   This sounds like I’m afraid to leave home, and sometimes I am.  I have vertigo attacks with no warning.  If I’m more than 30 minutes from home and have an attack start, it terrifies me.
  5. How to keep my caregiver from burning out – How to keep my marriage strong through all of this.

A small victory, a night when I can cook.

 

5 Small Victories – 5 list for the little, good things that keep you going.

  1. For dealing with the constant changes.  I decided long ago that life isn’t going to be as I expected, so I decided to change my expectations.  I’m usually pretty flexible now at thinking, well this will change some things…what will it do, and how can I change to keep myself going.   (I will admit here, I’ve had a new diagnosis that has thrown me for a bit of a loop, the treatments are hard, the decisions are hard.  I haven’t quite gotten to the point where I feel I can think about my new expectations, I simply don’t know what to expect…but when I do, things will fall in order I’m sure.)
  2. Making hard decisions is still difficult, but I feel better about it because I know how to look up many resources, I know other people (on-line) who have the same issues I have so I can ask them what their experiences have been, and I’m very lucky to have a husband who helps me weigh the pros and cons and is able to look at things objectively.  However, he always leaves the final decisions up to me.
  3. Keeping Positive.  –  This hasn’t been a hard thing for me until recently.  I get a bit upset about things when things change…I’ll have a pity party.   Then I say “Enough!”  And start thinking of how I can stay positive.  I think of things I can still do.  I think of others who are going through the same thing, and know many of them help me see that it can be alright, and I want to help others know that too.   Yes, again, recently this has been hard.  I’ve had a lot dumped on me in a relatively short period of time.  I’ve lost a lot.  But I have no doubt that I will get back to the positive me.   I still believe in living every day you feel well enough to the fullest.  Even if that means just sitting out in the backyard.  Do not take things for granted.  And try to think of something you are grateful for every day.  Sometimes I write the same thing every day for a few days because that’s all I’m feeling grateful for that I can think of….but other days I can list many things.   (Toni Bernhard’s book How to be Sick, has helped me keep positive thoughts, and helped me to look at things a bit differently…I highly recommend it!)
  4. I risk going out of the house much more than I used to.  I’m still afraid of having an attack, but I carry an emergency kit with me all the time.  It contains emergency meds, water, wash cloths, small trash bags to throw up in, some Zip-Loc bags to put cloths in after being sick…..things like that.   I’m still a bit leery about going more than 30 minutes from home.   When I have an attack it is not pretty.  I feel humiliated and degraded.  I can’t stop throwing up, I can’t walk, I often have diarrhea, and cannot control my urine.  So I recently decided if I’m going on a longer trip, I will need to wear disposable adult incontinent panties….just in case.  If I have an attack in public, I do not want to be mortified by strangers seeing me defecate and wet myself.  I also always carry emergency medication for migraines.    These measures may seem a bit drastic to some, but it has made it so I can go out and not be terrified that if I have an attack I will be left with no help.  I also carry my phone with me all the time and it has an emergency button if I need to call 911.  I won’t be able to hear them, but I can tell when they pick up and tell them what is happening, and where I am.
  5. Making sure my caregiver takes care of himself, and keeping our marriage strong.  This has been a bit difficult.  My husband will not admit that caring for me wears on him.  He will say sometimes he feels weary then he thinks about what I’m going through and it goes away.  He also says it is an honor to care for me.  He loves me so much, he feels honored that I trust him so much with so much that he has to see.  He never gets grossed out, and always makes me feel loved, even during the most degrading moments.   We keep our marriage strong ….in many ways.  I thank him every day for the things he does, and when I can do things, I do.  I try to do little things he really likes, for example when I can cook, I try to make things I know he loves, and that is healthy.   In many ways my being sick has brought our marriage closer.  One BIG thing we do, we see a counselor together.  Sometimes we individually go in, but normally we are together.  We can say things there and it’s safe, and if we thought it might hurt the other, she can defuse it and make us understand where it’s coming from.  This has made a HUGE difference in how we treat each other.

We also take advantage of my good days. We even try hard on the bad days.  We always show each other that we care.  We curl up together, we massage each other (I admit I get more than I  give here), we go for drives together….and on special nights when I’m really feeling good, we go on a date.

 

This was easier than I thought it would be.  I do still have some positive outlooks still in me.  Yes, I’m depressed, but I should be, as I said before.  I think the only reason I haven’t been able to deal with the latest diagnosis (Intracranial Hypertension) is that I’m getting conflicting news from different doctors in my team.  And I just don’t know what’s going on with this….my migraine specialist thinks most of my symptoms are caused by migraines.  So the IH, may not be a big deal right now.  But the medication for it is still helping, so that says I should have it….but I’m confused.  So confused.  But I’m positive, it will get better.

So yes, this was a good prompt.  It made me think about my health issues, and it made me look deeper about things than I had been.  I’ve only been dealing with the overwhelming emotions, not the thought process behind them.

So thanks WEGO HAWMC team for this prompt!

Daily Schedule #HAWMC Day 25

On By WendyIn Chronic Illness2 Comments

Today I’m using a prompt from the Extra prompts they sent us.

Daily Schedule. Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

photo courtesy of istockphoto.com

Honestly, I don’t have a set schedule for any day. My days are ruled by my conditions. If I’m having a day filled with vertigo, or migraines I spend the day in bed. If my hearing is way down, I spend the day as alone as possible. I often have doctor’s appointments.  My days change from one to the next, a lot.  If I’m feeling a bit better, I do more….

Here’s a recent weekend day.

After a restless nights sleep I awake around 9am with a blinding headache. I’m seeing double, with shadow spots on the walls. I take the medication that should lower my CSF pressure(cerebrospinal fluid pressure), and wait to see if it will relieve the pain. My husband brings me some breakfast in bed, along with the rest of my morning medications. The headache has not eased. Finally, I decide I should take some migraine and pain medication also. I try to sleep some more, this time sitting up, hoping my CSF pressure will lessen.

Noon – The headache is still there but much better, I’m hungry, but not sure I’m steady enough to go down the stairs. My husband brings me lunch. I decide to check my email, and do some things on the computer. Focusing up close is much easier than focusing at a distance.

2pm – Time for my next CSF pressure pill. I’m feeling much better, and steadier. We decide to take advantage of this time feeling a bit better. I want to go to the local Co-Op to pick up vegetables and meat for dinners for the week. We had a good trip to the store, and a nice ride home.

4pm – Home. I’m tired just from the little bit of shopping we did, and the ride. I help put the groceries away, and start to plan dinner. I turn and feel the world move. Oh no.

5pm – 9:30pm I have vertigo. This vertigo is caused by the Intracranial Hypertension, not the Meniere’s. I can tell because if I keep my head in one position and concentrate on something still close to me I will stop spinning, but if I move, the vertigo returns. If I was having a vertigo attack from Meniere’s I would not be able to stop it, no matter what.

9:30pm I am completely exhausted from the vertigo attack. Finally, I can move. I eat a little something, and head to bed….with a lot of help from my husband.  Take my nightly medications, and try to sleep.

This is a somewhat normal day. I don’t always have vertigo. I do normally wake up with a blinding headache that often takes hours to get under control. And we always try to take advantage of any time that I’m feeling well enough to do something. (I know going grocery shopping doesn’t sound exciting to most, but I love to cook, so shopping for food is exciting to me.)

Wendy just write…. #HAWMC Day 12

On By WendyIn Chronic Illness2 Comments

Prompt for today Stream of Consciousness Day. Start with the sentence “_______”just write, don’t
stop, don’t edit.Post!

(written April 5th)

image courtesy of http://www.thechicagobridge.org/

“Wendy” just write, don’t stop, don’t edit. Post!

Stupid computer can’t figure out what I want to do Can’t get the dang program to close…ugh….can’t make a slideshow…I know I’ve done it before…why do I want to throw it out the window.

Heard from friend was nice, but it’s hard. Can’t do so much. Other friend told me I wasn’t a good friend because I didn’t keep in touch and didn’t make time for her when I was feeling good, she’s the busiest person I know, I looked back in my emails, the not getting together wasn’t all my fault..I apologized. A lot. But the reply I got back seemed so cold, so sterile. I just couldn’t put more of me out there…..not with everything, I just couldn’t. She wanted so much more than I could give. I want more..but when you can’t just chat on the phone, and people don’t like to email or take your written words wrong it’s so, so hard. And to see someone in their prime doing everything you will never be able to do and everything is about that, and all I can think about is my illness, what is left? I miss her…I miss them…but I have nothing….I really feel I have nothing to offer.  What can I offer.  I can’t even hear them to talk to them.  I focus on if I can get out of bed, brush my teeth, walk outside….maybe if I’m lucky a little more….what can I talk about to people who have a full life? a job, children, acitivites, friends, interests?  I’ve been so consumed with just staying alive the past 2 years. Well that’s stretching….Well no it’s not!

This past year I’ve been through so much…and I’ve persevered, and now I’m mad at me!!

I was told I was better, and would be better!!! Damn the doctors! How could they do that to me!

I had 5 months of a new life! A better life! No vertigo. I was moving on. I started to become a Foster Parent, I started to drive, I got a CAR! I was making a life….I didn’t think it would be ripped out from me.!  I was so busy….I didn’t think it would end…

After those 5 months I went through 7 more lumbar punctures SEVEN with 5 or 6 sets of patches down my spine. I spent about 6 months in bed with not only CSF problems but gut troubles too. I’ve gained nearly 60 lbs. I feel old, fat and ugly. I don’t like me any more….yet I do. I do. I’m proud of the way I’ve handled things.

I’ve had 2 in depth surgeries on my ears. Surgeries that took my ears almost completely off and drilled to my brain, and left holes in my skull the size of a 50cent piece.  But they worked…I think.
I’m now told I have high CSF pressure…Intracranial Hypertension. Serious, rare. My hearing in my “good” ear is almost gone.

Now I’m falling apart….and I’m angry at myself about it!!!?????

I’ve been so resilient, so adaptive, so….I can handle it.It may not be what I expected…so I’ll change what I expected…NOW….I’m just plain scared and mad.  I thought I was mad at everyone, I’m taking it out on everyone….But I’m so angry at me. I’m angry I’m not bouncing back, and I’m angry I’m not more tenacious, and I can’t do more and damnit….I’m angry that my body is doing this to me!  I’m angry I can’t lose weight….I’m MAD AS HELL!

I’m angry I’m sick! And I have to deal with it. I have been dealing with it. But right now…I’m not doing the best with that.  However, I know me, and I will. I’ll get it together, and get myself another lease on life.  Life is good.

I have such a good husband. It can’t be all bad. I must think of the good days.