Let’s Talk About Me Feeling Better…..Part 1

 

Freedom by w.holcombe

Freedom
by w.holcombe

First, I want to say, I’m not cured of anything.  Nothing is gone completely.  I still have all my Meniere’s, and it’s symptoms.  I’m still deaf, with cochlear implants.  I still have Migraines.  I still have Cluster Headaches.  I’m still Bipolar. I still have Fructose Malabsorption.  I still have all of my chronic illnesses.  I am still disabled  I just don’t have some of the symptoms as severe as I did 3 months ago.  Truthfully, I am living a life that I didn’t think was imaginable 3 months ago, and in this series I’ll talk about some of the reasons I now think it is possible.

There have been a number of things that have contributed to me feeling better and I think it’s time that I laid them all out there for you.  I haven’t revealed everything before for a couple of reasons.  One, I was afraid it was temporary and I still am, 3 months is still a relatively short amount of time to tell if these things are going to continue to work, and two, one of the things is something that could be dangerous (and really may stop working at any time)….let me explain.

I will explain the dangerous one first.  This I wasn’t even sure I was going to talk about…but I think I should.

Remember how bad my headaches had gotten?  The migraines wouldn’t go away, after the Botox had been working so well and suddenly it stopped working?  I went for about 3 months of non-stop migraines.  It was horrible!!  I was put on steroids and had that severe vertigo attack and then was put on a different steroid to try to stop it….remember all that mess?  Then I started getting cluster headaches.  Remember?  If you are a new reader you won’t remember that, but it happened…and then…

by w. holcombe

by w. holcombe

One night I had a bad set of cluster headaches and didn’t wake up the next day until 2:30pm.  I woke up and my first thought was “OH NO! I haven’t taken my Diamox!”   Diamox is the medication I take to control the Idiopathic Intracranial Hypertension (high cerebral spinal fluid pressure ).  Without this medication I normally have an excruciating headache!  However, I suddenly realized, I didn’t have a headache.  For the first time in months, I didn’t have a headache.  Note: NORMALLY, when I don’t take this medication, I would be screaming from the pain in my head.  This day I did not have a headache.

I decided not to take it and see what happened.  No headache.  The next day.  No headache.  Days later, No headache.

Please forgive me for not telling you, but the reason I didn’t mention this before is because going off your medication without your doctor’s supervision can be very dangerous.  I should have called my doctor when I decided to stop taking the medication.  This could have been a medication that I needed to be go off slowly.  I could have harmed myself.  If you feel you are taking a medication you feel you need to come off of, please discuss this with your doctor before you stop taking it.  Do this under your doctor’s supervision.  I did not do this like I did. I was irresponsible.

I soon had an appointment with my neurologist, otherwise known as on here as my headache pain specialist, and I discussed this with her.  Luckily, I didn’t cause harm to myself, but she did say I should have called her and told her what I was doing, just in case.  The drug I was on is not one to play around with.  We aren’t exactly sure what happened.  It was evident that I needed the drug when I was put on it, I had a lumbar puncture to prove it and when I went on it I felt much better.  As I said earlier, normally if I didn’t take it I would have had a very bad headache.  We thought it would be silly to put me through another lumbar puncture just to prove I no longer needed it, as that was pretty evident.  The hypothesis is that somehow my pressure spiked, (perhaps I was lax in taking my medication…I’ve been known to do that before, especially if I have a vertigo attack, I can’t keep medication down, or I fall asleep from exhaustion and don’t take it….) and I had may have had a “blowout” causing my spinal fluid to drop.  I used to have that happen before, but the leaks would heal, the pressure would build back up and the whole thing would happen over again.  That’s why I was put on the medication, to try to stop that cycle.  This time the blowout may have cause a leak that didn’t heal, essentially causing my own “shunt” but without the surgery.  So now I don’t have to be on the medication.  Crazy, but that’s all we can think of???  Or maybe my body just regulated its self?  It doesn’t really matter, I now feel better without the medication.

This is probably the main reason my headaches are so much better.  Again, I still have headaches, both migraines and clusters.  The migraines are just much better than they were.  I can’t say that about the clusters because they didn’t start until right before this happened.  I don’t have a lot of these so far.  I’ve had more than I’d like, and I hope they don’t increase.

This could also have helped some of the vertigo, but I don’t know.  The only time my pressure changes really cause vertigo problems I have very severe vertigo attacks.  I have not been having the horrible vertigo attacks, the kind that where I spin for hours and lose all bodily functions, but I haven’t had those in a while.  I have been working hard to control those attacks.  That’s part of another thing I’ve changed…something I started changing before the whole medication things happened…but I wanted to tell you about this first.   So, to tell the truth, I really don’t know if this has helped the Meniere’s symptoms or not.  Mainly, I think it helped the horrible headaches.

Now there is a chance that eventually this leak may heal and my CSF pressure will once again build back up and I will have to go back on this medication.  I sincerely hope this is not the case.  The medication that is used for this, is not a friendly drug.  I hated it.  Side effects…ugh.  Again, another reason why I didn’t mention this, I knew there was a very real possibility that it would be a short lasting “fix”.  Now after 3 months, I’m a little more optimistic.

There are TWO other major things I changed that I believe have caused major life/health transformations.

One of is my Diet.   (This will be Part 2 of the Feeling Better Series)

One of is studying Mindfulness Based Stress Reduction…this is the best thing I’ve ever done for myself!  (This will be Part 3 of the Feeling Better Series)

 

 

 

 

 

 

Thank You Santa!!

Miracle on 34th Street drawing.  at deviantArt.com

Miracle on 34th Street drawing. at deviantArt.com

I got the best gift on Christmas morning.  It wasn’t under the tree (that would be pretty hard since we didn’t have one…but it wouldn’t have fit anyway).  It wasn’t wrapped.  I couldn’t touch it.  But it was the BEST present I have ever received!!

When I woke up Christmas day I didn’t have a headache!!!  Not at all!!!  I can’t recall waking up without a headache since I was 11 years old.  I have chronic daily headaches.  I always have a headache that ranks about a 2-3, then it’s much more if it’s a pressure headache or migraine.  Normally, I wake up with about a 6 or more because of the Idiopathic Intracranial Hypertension.  Lying down all night, even with my bed on an incline, the pressure just builds.  There have been many days I’ve said, “Oh how I wish I could just wake up without a headache, just one day.”

Merry Christmas to me, I got my wish!!!   I woke up with NO headache.  Most of the day was headache free.  It did return that evening, but those hours headache free were magical!  Waking up headache free was simply miraculous!

I do believe in the magic of Christmas!

Thank you Santa!  I hope you can get around to giving out a few of the things I asked for on my Christmas List.

I feel like a little girl.

A little update….

I wanted to let you all know I’m OK, I know I haven’t been around for a while.

I have had some challenges – emotional, physical, and mental.

Wendy - photo manipulated by W. Holcombe

Wendy – photo manipulated by W. Holcombe

First, the trip to Las Vegas, was postponed and we have no idea if it will be rescheduled. This doesn’t give me a good feeling about the company, and that’s sad, because I think Stuart would have liked that job, and we could have saved a lot of money living there. But hubby has had other interviews since then, and it looks like he will have multiple offers…I’m just not sure if he will be happy at these jobs, but right now we don’t have the luxury of him being able to be that picky, and that worries me. We also won’t be able to save as much money as we would have at the job in Las Vegas. (about the same salaries, but in places where the cost of living is higher)

The week of Thanksgiving my father was diagnosed with liver cancer. He has been sent to many

My Father (he's a bit thinner now)

My Father (he’s a bit thinner now)

doctors for many tests, and still he must have more test to determine if the cancer has spread. If it hasn’t the cancer may be operable. It appears to be contained at the moment. I feel guilty I can’t help, and I feel guilty that I would be afraid to help if I was able. I took care of my mother when she had cancer, it was the most difficult thing I’ve done, and the most rewarding. But my mother and I were very close, my father and I have always had a strained relationship. Don’t get me wrong, I love him, we simply have different outlooks on things, and I don’t see him being the easiest person to care for. I feel like that makes me such a bad person. However, I also know, if I was able, I would swallow my fears and help in any way I could. Right now I am hoping he is not in pain, and will not have to go through the horrors of advanced cancer. His birthday is tomorrow, he will be 81. I don’t think he looks it. My father has a full head of the most beautiful white hair. Well enough about that for now. I’ll know more soon.

My asthma has been acting up horribly. I start coughing and wheezing with just the tiniest bit of exertion, and just forget about laughing, that will send me into an asthma attack faster than anything. I almost had to have an emergency visit because of it, but a double treatment with the nebulizer calmed things down. I was doing better for a while, but it’s sad to think that I have coughed every day for over a year. I have also been having sinus drainage, this has not helped the cough, and sore throat (from coughing), but I can tell the difference in the cough. The production is different…let’s just leave it at that. My whole body hurts from coughing.

I haven’t been able to make it to the audiologist to have my CI adjusted, so people are still sounding a bit like they have huffed helium. I’m getting awful sound headaches after wearing my CI’s for just a short amount of time if there is more than one noise in the room. (like the TV and Stuart talking). But I’m pleased to say, I’m still hearing more music than I have in years!!

I’m having some pretty bad headaches/migraines lately. I’m not sure the Botox really helped much this go around, and that makes me pretty darn sad. However, I think a lot of it is my Intracranial Hypertension. I wake up with a horrendous headache almost every morning. Another major trigger, is a deviation in sleep pattern, and I can tell you, my sleep pattern simply doesn’t exist! I am not sleeping well. Some days it’s because I cough all night. Some days I don’t know what it is. The other night I felt like things were biting me….like little no-see-ums. I drove me crazy. So sleep is erratic, and that’s a major trigger for my migraines and vertigo. Yes, that’s acting up too. I keep feeling like I’m on a boat, not a great feeling.

I’ve noticed I have pretty severe social anxiety. I do not want to go anywhere. I don’t want to be around people, especially people I knew before all this started and I haven’t seen much of them (if I’ve seen them at all) since then. I don’t want people to see that I’ve gained so much weight. I don’t want to be in a situation where I’m lost because I can’t hear. I’m terrified to have an attack in front of people. I feel I have so many phobias now I live in fear. The only places I’ve been since we have returned from Tucson is to the doctors, and to a couple of restaurants (this took a lot of courage for me, and we had to go on off times so the restaurant would not be crowded). Every time we go out, even to the doctor’s offices, I get so worked up I have to come home and rest. (all my spoons are gone!)
I don’t feel like anyone understands me. I wish I had some local friends with chronic illnesses that felt well enough to visit. I think part of this started because I can no longer drive, so I can’t go anywhere by myself, this puts me in the mind set that I shouldn’t be out. Or maybe I’m just trying to justify the phobias a bit more. It’s not good to be isolated, I know, but I’m really scared, and often I get so sick before going out that I simply can’t go. You can’t imagine how many doctor appointments I’ve had to reschedule.

On the other hand, there are days I think I can do things I used to do, so I try…and usually fail miserably. This doesn’t help my self confidence about going out.

I think the title of this blog post is wrong. This turned out to be much more than a little update, and I’m cutting it short!

I’ll be back soon. I have much to share. Plus photos of my new CI’s.

What’s up and on my mind…a Free Write…

Please note…I’m just going to write and not pay too much attention to grammar or spelling or anything like that, I’m not going to re-read because I don’t want to filter what comes out.  This is an experiment, something I sometimes do in my journal….let’s see what comes to the surface….

Acceptance is not the same as giving up, but if I’m not careful it can slip into that.  I’ve accepted my illnesses, especially Meniere’s with hearing loss, for a long while now, and I’m really ok with it.  I realize things aren’t going to get much better, and my not get any better….now is that giving up?  not saying I’m OK with it, but saying it won’t get better?  When my husband was worried because I had been feeling worse for a while he wanted me to think about going to the doctor and he said, “I just want you to get better.”  I got so mad and upset.  What?  Get better?  What delusional state are you living in?  Do you really think I’m going to get better???  I felt like he didn’t understand….then I realized…after a long discussion that he meant he wanted me to feel better than I had been for the past month, he felt something new was wrong and wanted me to check it out.  Then I thought….could I get better?  Have I given up?  and decided, yes, to a certain extent I had given up.  I was so determined to accept my life as it was, I had given up that it could be better.  Maybe the hearing can’t get better….well, the doctor has told me that much.  And possible the vertigo will never get better….but who knows for sure, I accepted my fate.  I’ve also accepted living in pain.  Hip pain, pelvic pain, Vaginismus, neck pain, arthritis pain….and my other illnesses….I accepted my fate, I’d live with these forever, but really, do I have to?  Yes, I’ve put these issues on the back burner because the Meniere’s, Hearing loss, and Migraines have taken over my life, but as I’ve found that my Migraines can get  better, I can hear better (thanks to the computers in my head) maybe not the same or as well as i once heard, but I can hear….why should I not believe some of my other issues can be helped.  No, I’d given up.  I’d given up on having a normal sex life, given up on being able to walk for any distance without being in horrible pain, given up on so much….  I feel better that I’ve accepted the things I cannot change, but I’m ticked off at myself for giving up on the things I could.  This has changed!!  I’m not giving up on getting better…the things that can get better….I’m not giving up on me.

I had a realization the other night.  I’ve been having full blown panic attacks lately…yes, feeling like I can’t breathe, my chest tightening….everything.  I realize most of these have been triggered by the loss of income in the family, then me being denied my disability claim, and I’m still mourning the loss of Sandy.  (yes, it’s been over a year and an half)  Losing a friend who was so close to me for 19 years has taken it’s toll on me.  I can honestly say I have not grieved for anyone more than Sandy except for my mother.  Maybe it’s because of everything else that has happened in the past couple of years, everything just building up on it…but I don’t think so…my Sandy girl was just so special.

I HEARD MUSIC!!  Yes, that’s right!  I actually heard music for the first time in at least 3 years!  Stuart was out of town for a job interview, and I was watching a movie, they started playing Credence Clearwater Revival’s Have You Ever Seen The Rain?  And I actually heard it!  I understood the words, I heard the music!!!  This new CI likes music.  I still can’t understand many spoken words on TV, but I heard music!  I didn’t realize I missed it so much.

Well, I think that’s all for now.  I’ve been having a hard time keeping my CSF pressure stable, and today is a bad day.  My doctor raised my dosage, and I need to take my meds.  I also have to see a neuro-opthomologist.  (Yes another thing I had accepted, and felt like it wouldn’t get better, I know it won’t go away, but hopefully, it will get better)

My asthma symptoms were much better but not great, my doctor added another medication, and now I’m much worse.  Bah!  Hoping this will get better.

Oh, Stuart’s interview in Las Vegas went well.  We are going to go look around soon and then he will make a decision.  Lot’s to do…well, not as much as I thought, they said they will pay for the move.  : )  But selling the house when we aren’t here, that is a scary thing….at least to me.

Keep meaning to take pictures of my new Cochlear Implants…I want to take a photo of the new beside the old, so you can see the difference.  It’s amazing how much it changed in just one year….but I don’t think it will change that drastically again for a while.

More soon….thanks for putting up with my babbling.  AT least this has some coherent thoughts some of my journal free writing doesn’t.

DENIED!

 

Disability Knocks

Disability Knocks

Yes, I know MOST people are denied disability the first time they apply, but this is the first time I’ve heard this crazy reason!

I was found to be DISABLED….Yes!

But was Denied because I waited so long to file.  What?So what is too long?  I had to be disabled before 2010.   Again, What?  My disability date was November of 2009!  So what are they reading?  And how can you screw up that bad?

So the appeal has been started.  We do have a lawyer who is taking the case, and she is kind of scratching her head asking….What?? too.  This time I will have witnesses as to when my vertigo actually started interfering with my work.  The disability date I used before was the date I had the vestibular testing, since that’s a requirement for Meniere’s to be considered a disability.  However, in 2002 or 2003…I’ll have to look it up…I started having severe vertigo, was sent to the emergency room.  I was managing a Custom Frame Shop at the time, can we say Dangerous?  I was found on the floor in the frame shop in full spin, another time I made it to the bathroom and was in there for close to 3 hours throwing up.  Fellow employees from a different part of the store had to take me home more than once.  We had to close the frame shop many times.  I had to quit because of my health.

There are more stories like this…soooo, they denied my disability claim that started in late 2009, now they may find out I was disabled before that, and they have to pay from the date of disability.  Think it would have been better if they had just approved it the first time.

Even if I had not worked within the given time, it’s not fair to be denied.  I was lucky, my husband made enough money that I didn’t need disability, but times have changed.  I need this now.  I should have filed earlier, but I didn’t.  Now, I’m being punished for not taking money from the government when I didn’t need it.

So as I said before….What???

Filing Disabilty

We finally filed the paperwork for disability, and two days later I got a packet wanting more information about how my illness(es) limit my activities.

This entire process has taken so much out of me, it is so depressing.  I do not think of myself as being so dependent and disabled as i really am.  Writing it out is taking its toll on my psyche, and making me very scared about hubby taking on more responsibility outside of the home.

I was just filling out the papers and it asked what I could no longer do because of my illness that I used to do.  It gave me one line.  Really?  One line?  I realized I could probably write a book!  I listed some of the most important things and then said there were way too many things to list in that area.  I should probably add a new page.

When I think about it, the question should be, what can I do now that I could before.  I used to do be able to do more than I do now.  Now, I spend most of my time in bed.  That needs to change, even if I just go to the couch.  But the headaches are happier in a dark room, and my bedroom has been made dark, no other room is.  I can still type on the computer…well some days.  Some days, like recently, I’ve been having low-grade vertigo for days.  I have been having a heck of a time.  Every day I feel like I can’t move my head, things move, just not very fast.  In the evenings it gets worse, much worse.  (perhaps my Intracranial Hypertension meds need to be adjusted?…who knows.

The paper asked me if I have any unusual fears or behaviors.   Wow!  That got to me.  I actually had to admit my fears.  My fears that I will have an attack in public, my fears that an attack will hit any time (of course these fears are very justified).

The Bath by cristalart at deviantArt.com

The Bath by cristalart at deviantArt.com

But then there is the fear of taking a shower or bath…yes, I am absolutely terrified every time I have to bathe or shower.  I’ve had an attack in both places, I never feel steady in either place, and I’m simply scared.  I can’t be in either without someone (Stuart) in the bathroom with me, often in the bath or shower with me.  Washing my hair is the worst.  Having the water on my head, the temperature change, my head goes crazy.  It doesn’t seem to make a difference if my hair is long or short, it is hard.  At least when it’s long I can go longer between shampoos, I can just put it up in a pony tail and no one knows.  (luckily I have dry hair).  I normally wash up at the sink, and when I can’t do that because of my wonky head, I use wipes.  Still, I miss my lovely baths.  I used to relax and enjoy a bath.  I’d light candles, read, or just soak.  It helped my sore muscles and it made me feel pampered.  Now, I’m embarrassed because I’m a bundle of nerves and crying just thinking about the fact that I need to take a bath.

Many days I’m afraid to get out of bed.  I will wake up and I’m just not sure.  OK, I feel like I could, but do I risk it.  The last couple of weeks have been vertigo attack after vertigo attack, I hate to be unprepared for an attack, and it’s easier to ride out in my bedroom.

I’m not trying to sound pitiful.  I don’t want that.  I am trying hard to make things better, and I have had a few decent days.  Yes!  Celebrate the good days!!!  It has just been hard writing down all my limitations.  It’s also hard telling them, well sometimes I can do this, and other times I can do this, but most of the time I can’t do most of it.  However, I do hope it gets better.  I even said that in the paperwork.  I do hope I will be able to do more, but I know I will always have severe limitations.

Funny thing….when they asked what I used to do that I can’t do now, I just realized I didn’t say “Hear”.  Ummm, you would think that would be the first thing I thought of…but no..?

But that’s another story.

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.