Tag: Pain

Not Just for Wrinkles….

On By WendyIn Chronic Illness, Migraines12 Comments

Botox is now used to treat migraines.  I know you saw me post that I was getting my shots on October 3rd….and I did…more in a moment.  However, isn’t it amazing that Botox will help migraines?  Or at least I hope it will.  I’ve been reading about it, and it seems to, I know someone who has been getting the shots for a while now and she has had wonderful results.

Botox is for people who have tried many other treatments but still have 15 or more migraines a month.  In trials it prevented about 9 of those headaches.  Having half as many migraines as i do now would be amazing.  However, I also read that people who took the placebo reported having 7 fewer migraines a month….a difference of 2…not so great.

There are a number of side effects you could have, but I haven’t noticed anything.  On the Allergan site (they make Botox, I found that funny since they are known for contact lens stuff) it says, “It may take several weeks to see a response. In clinical trials, patients showed a response at their 4-week evaluation. After 2 treatments (at 24 weeks), BOTOX® was proven to reduce headache days each month.”  I was told by my doctor (and I know others have been told this too by their doctors) that you will notice a difference in 4-7 days, normally about a week.  I hope the doc’s right, I’m ready for relief. Also, considering I won’t be able to get my second injection for about 5 months I might have waited until then for my first treatment if it takes 2 treatments to be proven to reduce the number of headaches each month.   (We will be in Tucson, AZ for the winter, so I can’t get my next injection until March 7th).

I’ll keep you updated on how my headaches are doing.  Allison, from Taking Life for a Spin, recently had her first treatment and after about a week she reported she couldn’t lift her eyelids.  You can check out her story here: Unresponsive Eyebrows.

So, how did the treatment feel you ask…what exactly did they do???

I had 31 injections….here are photos from the Allergan site showing the injection sites.  One of mine was a bit different, Cochlear Implant in the way.

Forehead injection sites
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites sides.
This was a bit different on my left side due to my CI.
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
injection sites Occipital
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/
Injection sites back of head and shoulders
photo from http://www.botoxchronicmigraine.com/botox-treatment-expectations/

What did it feel like?  My doctor told me it would feel like little bee stings.  Well I’ve only had big bee stings so it was much less painful that I thought it would be.  The needles are tiny, but the solution does sting a bit, and some of these areas were pretty sensitive on me, but it wasn’t bad.  I’d do it again.  : )   It went really quick, my doctor really knew what she was doing, just a few minutes and it was done.  I spent much more time waiting on her to come in the room.  : )

So like little bee stings, yeah, but remember I got stuck by the whole hive!  hahaha.  No…I promise it wasn’t bad at all, it was nothing like some of the other procedures I’ve had!!

After I got the Botox injections, I also got an injection for the migraine I had right then.  (one that had been going on for nearly 2 weeks)  So after my visit we got a bite to eat and I came home and slept for 6 hours!  What a way to spend the day…a good way actually.  The shot in the butt helped my head pain, and he shots in my head will hopefully help me to have less head pain, and I had a good 6 hours of sleep straight through.  I did feel like I wasted the day, then I thought, “What else would I have done?”

Oh….I forgot the funny part of the story! But beware…this is Way Too Much Information!

I had been having cramps and all the symptoms of having a period, with no period, for over a week.  That morning I woke up and felt fine, I thought….hmmm, guess I’m not having a period this month.  (I am 49, I’m expecting to start skipping some periods)  So I got dressed, and left for the doctor’s, we get half way there and I’m hit with a horrible cramp.  I thought….no, no, no…I didn’t bring a thing.   Of course, when we got to the office I go to the rest room and yep, I started.  Well, If you are a woman, I’m sure you’ve all had this happen at some point in your life, and what do you do?  No dispenser on the wall….so…Toilet Paper to the rescue…and pray it’s good enough for the time being.  So I went and waited and waited for the doctor, and had all my shots and 2 hours later we were leaving…and I forgot, yes, I forgot about my makeshift protection.  So we go out to eat lunch, and go home and I walk in the door and remembered.  How could I have forgotten?….well the shot could have had something to do with it, but, but, ewwww.  Luckily, it wasn’t that bad.  But I will never again assume I’m not having a period!!   Lesson learned!

A Realization

On By WendyIn Life13 Comments

For months now…oh about six…I haven’t had the desire to do much.  Blogging always helped me deal with things and I’ve found support here I never thought possible…but I just haven’t felt like it.  I’ll think about blog posts, write them in my head, but then in the day I don’t get out my computer and get in touch with the world.  I keep thinking I’m snapping out of it, and I am better…and I do think I’m pulling myself out of this depression now, but it was there sitting on my shoulder, whispering in my ear “What’s the point?”

It’s almost 6 months since Sandy died, and I’ve been consumed with grief and guilt.  I know I don’t have a reason to feel guilty, but all the “should have, would have, could have” questions kept swimming around in my head.  Those kind of questions don’t do any good at a time like this, but they’ve been surrounding me…all the “What if’s…”

Sandy….Happy Dog!.

I still expect to see her, and occasionally, out of the corner of my eye, I could swear she was there.  I will feel her on the bed, and nothing is there.  There have been times I could have sworn I heard her.  (Now I wonder how many times I heard noises and thought they were her and they were something else?)

A lot of people would not understand this deep grief I feel for the loss of my dog.  But she was more than just a dog to me…she was a constant companion for 19 years, my Baby Girl, my Sugar Plum Fairy…or as Stuart would call her, our “Stinky Dog”.  No Sandy wasn’t a Stinky dog.  It is a term of endearment from my husband, if he makes up a little song about you and it says you are stinky then he must love you dearly.

Stuart and (his Stinky Dog) Sandy (taken early April 2012)

Because of this lack of understanding, and the feeling within myself that I shouldn’t feel like this still, I’ve been feeling very alone with these emotions.  I hid a lot of it from Stuart for a while, but recently I haven’t been able to.

Two nights ago, I had a complete breakdown.  Nothing sparked it, nothing.  I was just about to doze off, and it started.  I ended up crying (read sobbing uncontrollably) for almost two hours.  Since then I have felt a release.  I’m still crying over her, but something broke during that night of gut wrenching sobbing.  I feel freer from the guilt than I have, I feel like I can move on….that doesn’t mean I’m forgetting my dearest Sandy Girl and everything she means to me, but I hope it means I can begin to see the sun again.  I’m kicking that little guy off my shoulder, he will no longer be able to whisper those disparaging words to me.  I love Sandy, and always will.  I know I did the best I could for her, even if i do question that sometimes.  More so, I question if the vet did the best she could have done for her, but I need to let that go too.  (However, Max has a new vet now.)

Sandy and Max checking on me in bed.

 

I know she was 19 1/2.  That’s amazing I’m told.  But just days before she died she was chasing the cat, curling up with me, and just such a happy dog.  I remember how every time she ate her dinner she wagged her tail the whole time.  I need to think more about the good memories, and remove the shroud that has been over me holding in just the memories of her last days.  Sandy brought me too much love to dwell on the tragedy of her death.

I won’t make promises that I will be here more often, but I think I will be….I need to get back to my friends, and managing my life, instead of allowing it to manage me.

(there may be many errors in this post, I just can’t read it again right now.)

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!

 

Invisible Illness Week – 30 things you may not know…

On By WendyIn Chronic Illness, Disability, Meniere's Disease10 Comments

September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site. 

30 things about my illness you may not know.

(warning, some answers may give too much information, but it’s not detailed)

See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
  1. The illness I live with is:  The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain.  If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
  2. I was diagnosed with it in the year:  I don’t remember any more.  I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20’s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis.  Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
  3. But I had symptoms since:  Meniere’s – the first attack I remember was in 1993.  Migraines – the first one I remember, I was 11.  The pelvic pain – in my early 30’s,  in the mid 1990’s.  The hip pain – 2008. Bipolar – in my teens.
  4. The biggest adjustment I’ve had to make is:  These are a few major ones for me….  Losing my hearing.  Not being able to drive.  Not seeing my friends like I used to.  Realizing that I will never be cured.  Not being able to have a sex life without pain.  (but I’ve dealt with, or am dealing with all of these.  They will not keep me down.)
  5. Most people assume:  I can do much more than I can, after all, I don’t “look” sick.  And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
  6. The hardest part about mornings are:  Never knowing what the day will bring.  I often wake up with a blinding headache, I know what that day will bring.  But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine.  However, I try to make the most out of every day.
  7. My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer.  I think I see too much of the medical community in person.
  8. A gadget I couldn’t live without is:  I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to!  My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
  9. The hardest part about nights are:  Trying to sleep, and trying to stay asleep.  Fear.  Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day.  I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
  10. Each day I take __ pills & vitamins. (No comments, please)    18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
  11. Regarding alternative treatments I:  have tried many, including chiropractic, acupuncture, certain vitamin routines….  I found medical massage helps my migraines and hip pain a lot.  I also use a special diet to treat gluten and fructose intolerance.
  12. If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt. 
  13. Regarding working and career:  I don’t work.  I don’t have a career.  Takes a lot out of conversations with others.  My doctor suggested I look into filing for disability, but I haven’t done it yet.
  14. People would be surprised to know:  I often don’t wash my hair for a month or more.  Water on my head is a trigger for me, especially if I have to close my eyes.  Luckily, my hair is pretty dry, and it’s long so I just tie it back.
  15. The hardest thing to accept about my new reality has been:  There are a lot of times I have to say” I can’t” or “no” to people…and to myself.  Losing most of my independence.  Not being able to drive.  And not being able to have a normal sex life.
  16. Something I never thought I could do with my illness that I did was:  Find the positive.  Become my own advocate.  Fire a doctor.
  17. The commercials about my illness:  The only one of my illnesses I’ve seen commercials for is Migraines.  Commercials are always drug companies wanting you to talk to your doctor about their drug.  I’m not comfortable with this, and normally the side effects they list are pretty scary.
  18. Something I really miss doing since I was diagnosed is:  I miss being able to go places alone.  (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
  19. It was really hard to have to give up:  My hearing.  Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times.  I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other.  Without technology, I can’t hear anything.
  20. A new hobby I have taken up since my diagnosis is: Blogging. Reading a lot!  I’ve always liked to read, but now it’s almost an obsession.  (thank you to Kym for my Kindle!   Oh. another gadget I wouldn’t want to live without.)
  21. If I could have one day of feeling normal again I would:  I would be so very thankful!!  Then I’d spend a day pampering my husband, in and out of bed.  ; )
  22. My illness has taught me:  To be my own advocate.  To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.  That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have.  And that I can handle much more than I ever thought I could.
  23. Want to know a secret? One thing people say that gets under my skin is: Any form of, telling me I’ll get better.  “When you get better….”,  “You will beat this….”   NO, I won’t.  This doesn’t go away.  I may be able to find something to make it more tolerable, but it will never go away.  And often treatments that work, stop working.   I also hate it when people say, “You don’t deserve this”  I know they are trying to be kind….but I never thought I deserved this!  And one more….”But you look so good.“
  24. But I love it when people:  Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it.  But, sometimes I feel like people forget I’m anything more than my illness.
  25. My favorite motto, scripture, quote that gets me through tough times is: This may not be the life I expected, so I’m changing my expectations.   I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
  26. When someone is diagnosed I’d like to tell them:  Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people:  Everyone’s journey with Meniere’s is different.  Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though.  I’m in the very rare group.  I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective.  Most importantly, I assure them, they are not alone.  They can contact me any time, and there are online groups.
  27. Something that has surprised me about living with an illness is:  That my husband and I have gotten even closer.  Thank you to our therapist, I think having to go to a therapist about all of this surprised me too.  I was not handling losing my independence very well, and hubby wasn’t communicating very well.  But by going to a therapist we began to communicate out needs much easier, and recognize our needs.  Another big surprise is that people will reach out to me.  I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
  28. The nicest thing someone did for me when I wasn’t feeling well was:  (This does not include things my husband does for me)  Come to visit me.  It doesn’t happen often, but I do enjoy other people’s company.  I hate that I often have to cancel when someone wants to do something with me.  I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble.  I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things.  So missing a visit makes it harder to make plans the next time.
  29. I’m involved with Invisible Illness Week because:   Because I have more than one. Some people I love and care about have invisible illnesses.  We need to let people know we are still people, but don’t judge us by how we look.
  30. The fact that you read this list makes me feel:  That you care, and maybe you understand some things about me you didn’t before.

I can’t believe it’s been so long…..

On By WendyIn Chronic Illness, Meniere's Disease5 Comments

There is so much to tell, where do I start?

I think I’ll just make a list of things that have been going on, then I’ll expand on them later….with some pictures.

First, the day after I wrote my last post be got a Foster Puppy.  (that’s why I promised the next post would be happier.)  For 2 weeks, we have the love of a 5 month old lab/Shepherd mix…this is a big puppy.  But he was adorable, and we loved spending the time with him, fortunately Max (our cat) did not share our enthusiasm.   I’ll write more about that later.

Then I had a migraine that lasted for 5 days without letting up, my meds would take the edge off a little, but not much.  I spent those 5 days in our bedroom with blankets on the windows, and the doors closed.  Most of the time I also had my hearing devices off.  The light and sound was so unbearable.   I really hate have hormone headaches.  And this month was horrible.  The cramps, the ….well you know what happens during that time of the month, but I will say, this was one of the heaviest periods I’ve ever had.  I’ve heard that some women right before they start menopause they have worse periods.  But I really don’t know about that.  I need to look up much more about menopause.

Hearing with my CI is getting better.  Stuart and I went to a restaurant that I can never hear in, and I heard the waitress, I ordered for myself!  I carried on a conversation!  This are still a bit distorted, but I’m beginning to tell male voices from female.  Some things sound as they should.   More on this later.

Tonight my hubby made homemade chicken soup for me, can you guess why?  That’s right, I woke up in the middle of the night last night with a cold.  I can’t remember the last time I’ve sneezed so much, and where does all this stuff that’s coming out of my nose come from?  Ick!  (btw, that’s not a serious question)

I probably have more to tell, but my head is hurting too much now.  And I should try to get some rest….and some tea…oh yes, some tea will make it better.

The chicken soup was AWESOME!  if you’d like the recipe you can find it here: http://wendycooks.wordpress.com/2012/04/15/the-best-chicken-soup-ive-ever-eaten/
Stuart did change one thing.  We just made a huge pot of Chicken Stock, much richer than the broth the recipe makes, so he used that for the liquid.   Sure is funny how chicken soup can make a cold sufferer feel so much better.

 

 

It’s been a very rough week.

On By WendyIn Chronic Illness, Meniere's Disease10 Comments

It has been a very hard week.  I won’t go into details as it concerns people in my family, and I won’t talk about my family on my blog again.  I’ve been contemplating all week simply closing my blog and disappearing, or making it private.  But that’s stress talking, I’ve found so much support here and I want to think I’ve given a lot of support and information here too.  Plus I need a place to go and just get it out.  Even when I can’t talk about all of it.  Let’s just say, it’s settled for now….maybe.

Photo by Vincent Morrison – Manipulated by Wendy Holcombe
If photos could show feelings…

On the 15th, I got hit with a huge stessor!   I was under extreme stress and confusion for hours.  Finally, things were calming down.  I was relaxing in bed, tying to breathe in the ill feelings I felt towards me, and breathe out happiness and goodness to all.  I decided to have a little pineapple Greek yogurt, with a banana and nuts for desert.  It is delicious.  Well, what I got to eat of it.  Right when Stuart brought me my decadence, I had that Wonky feeling in my head…so I took my pills and hoped it was just a blip on the radar.  (Yes I know, how could I think of eating if I was feeling Wonky, but I’ve been having a lot of Wonky spells that just turn into nothing lately.) Unfortunately, before I was even finished with my treat the world was in full spin!  This was one of the longest attacks I’ve ever had….and one of the strangest.  It was Meniere’s, not vertigo caused by a migraine.  I went through all the stages…and all the grossness. (some how while throwing up I bashed my elbow on something, and it has had a knot on it since then.  It’s getting better, but I was afraid I had broken it the next day.)  Again, all the throwing up and losing all bodily functions.  Not being able to lift my head, except to put it in a bucket.  (I even threw up on our brand new carpet….not much, thank goodness, but Yuck!)

So the vertigo kept changing speeds, it would be wild, so fast I couldn’t recognize the things spinning by, then it would slow down to the point I thought it was going to stop any second….I even dozed off a few times, just to be jerked awake by vicious spinning again!  This went on for over 16 hours.  Luckily I didn’t throw up the whole time, I did keep heaving though.  Even before I threw up the first time, I would have the worst muscle spasms and just heave, like I had dry heaves, but nothing had started yet.  This often happens to me when I have an attack, at he beginning at least, I can’t figure out why.  Why does it have to hurt so bad??

Even after the spinning stopped for the next day I kept feeling like they would start back up, I couldn’t walk straight.  It was a very rough 2 days.

On Friday I had an appointment with my headache pain specialist (neurologist).  I was supposed to get Botox shots for my migraines.  Many people have had good results from this procedure.  I was a bit nervous, they do 31 shots in your head and neck/shoulder area.  Alas, I did not get it done.  Once again our insurance did not send a pre-approval, they didn’t deny it, but they didn’t approve it either.  Just like with the Cochlear Implant.  What a pain in the butt that was.  Luckily, they did pay for most of it.  They didn’t cover a procedure that cost about $500, testing the device after they hooked it up to me to make sure everything worked right.  Can you believe?  What if they hadn’t tested it, and later found out part of it wasn’t working?  I’d have to go through another surgery to replace it.  How bizarre.  Stuart called the insurance company on Monday, I have been approved for the procedure, it just seems no one knew it.  So now I have to get another appointment with this doctor…..hope it’s soon.

Sunday I had another scare. but not with vertigo.  Really I wasn’t scared, it’s happened before, and I’ve been checked out, still it’s uncomfortable and yeah, it’s a bit scary.  I had heart palpitations.  I figured out why, but it lasted a long time.  I wasn’t as careful Sunday about what I ate or drank.  I do not drink caffeine very often, and if I do, it’s just a little bit.  I also don’t eat much sugar.  Well…I wasn’t so bright on Sunday.  We were out and I had Mandarin Orange Green Tea, not thinking that Green Tea has caffeine.  That would have been fine, but later in the day we were at a store and I started feeling funny, and very thirsty, we couldn’t find anything that didn’t have either caffeine or sugar.  I decided to take the caffeine since I wasn’t sure if the sugared drinks had fructose.  I only drank about half of the soda.  After dinner I decided to have some ice cream we bought, it is Fat Free, and I was thinking Sugar Free too.  Not bright.  I only had about half a cup, but it was enough.  I started feeling strange.  I thought my blood sugar had dropped, so I ate some protein. But it didn’t work.  I was sitting on the couch watching TV with my hubby and I felt like my heart was going to beat out of my chest.  The doctor told me to massage one side of my neck, and it should help, she also said to put something cold on my wrist.  Well I did both, for a long time.  This lasted longer than I was comfortable with.  Finally, things slowed down….and all was alright.

I hate how much I have to watch everything I put in my mouth.  It would be difficult enough if that was all I had to deal with, but dealing with all my food issues and my other health issues is hard!  I’m dealing with it, and I’m lucky I can eat as much as I can…right?  I just need to be more diligent.

 

Well that’s all for this past week.

I promise my next post will be on a happier note.

Photo Op! Cochlear Implant

On By WendyIn Chronic Illness, Cochlear Implant9 Comments
Getting Prepped for Surgery. (photo by Stuart Holcombe)
My Surgeon’s Signature. Marking which ear they will be operating on. (photo by Stuart Holcombe)
I’m a FALL RISK! When you have Meniere’s as a diagnosis, you are pretty much so labeled a FALL RISK. Funny, I don’t really see where they do anything different. I did get an escort to the bathroom, but if I had fallen, she wouldn’t have been able to hold me up! I think I’ll keep the bracelet and just keep putting it on when I go to Duke, no sense in wasting them. : ) (photo by Stuart Holcombe)
At home, tucked in my bed with Monkey after surgery. Sorry photo is a bit dark, but I didn’t have time to adjust it.
photo by, Stuart Holcombe
Taken 7/23/2012 – The oily part and yellow part is the stuff they put on the protect the wound until it has healed enough….I get to wash my hair on Thursday. I do not have any stitches to take out, all will dissolve. (photo by Stuart Holcombe)
Another view of incision. It was hard to get my hair in this position to show how much was shaved. It is very easily covered up.
photo by Stuart Holcombe

Surgery went “Perfect”

On By WendyIn Chronic Illness, Cochlear Implant11 Comments

Sorry I haven’t posted, and unfortunately this post won’t have photos, I promise they will be coming soon.

My surgeon told Stuart that my surgery went “perfect”.  Yay!

Of course, I’m a weird patient….I had a reaction to the antibiotic.  Not a severe reaction, but I looked like a clown.  I had very red cheeks.  Nothing serious, and it faded the next day, I didn’t even have to change my antibiotic, but we had to keep a watch out for a little while.

I also had a reaction to the adhesive they used to attach the heart monitor to me.  I looked like I had huge hickies from an octopus hugging me.  But again, nothing serious.

The pain isn’t bad.  But it is there.  Yesterday was worse, probably because I hate taking pain medication and was tired for feeling drunk.   I am swollen, but I think it’s better than it was yesterday.  I’m very tired, and I’m having some killer migraines.  That’s why I haven’t posted before now.  The migraines made it way too uncomfortable for me to look at the computer.

So….everything is fine!  I’m doing well!

My Cochlear Implant will be activated on the 31st.

I’ll get photos up as soon as I get them off of my phone!  They look much like the photos from the endolymphatic sac surgery…same smiley cup and everything.  Wait until you see how much hair is gone!  (really, not much at all, you can barely tell!)

off to sleep some more.

Thank you all for so many get well wishes.

Sleeping

On By WendyIn Chronic Illness9 Comments

There is so much I wanted to accomplish during my little hiatus.  Paying more attention to the spiritual side of me, painting, working on some things in the house….

What have I been doing?  Sleeping.  A lot.

First I’ve been having much more Migraine Associated Vertigo (MAV), one day I had 2 attacks in one day!  That’s never happened before.  On those days I understand why I’m so whipped out, but there are many days where nothing has happened, but I feel like I can’t keep my eyes open.  I’m wondering if one of my medications is bothering me, but nothing has really changed recently.  I was taken off one drug, but nothing was added when this started.

On the 12th I had the Pneumovax -23 vaccine.  It’s a vaccine for 23 different strains of pneumonia.  Including one that causes meningitis.  This vaccine is required for anyone who is getting a cochlear implant.

Unfortunately, I’m one of the people who had side effects to the vaccine.  Including extreme soreness of the injection site, and my whole arm, fever, swelling of injection site, redness of injection site, diarrhea, and extreme fatigue.  Normally, all of the side effects subside within about 5 days, but some people feel some of them (especially the fatigue and malaise for 14 days or more.)  I think I’m in the more category.

This has been an experience.  Most of the symptoms did disappear after the first few days.  The injection site is still a little pink and warm to the touch, but I can lift my arm, not fever, the extremely gross diarrhea didn’t last long, I’m grateful to say.  (too much information following) – One day I was having loose stools, nothing serious, but I felt so exhausted, so I decided to take a nap.  While I was asleep the diarrhea struck, it didn’t even wake me up!  What a mess.  That was a scary thing indeed, for a long time I was afraid to go to sleep, but I was so tired.  We decided to put a pad under me on the bed so I knew if something happened I wouldn’t ruin the bed, then I was finally able to go to sleep.  But I had 3 times where I had to RUSH to the bathroom before sleep finally came…and I’m happy to say the extreme diarrhea stopped.

Still I’m tired.  It’s been 19 days.  I don’t think this is just the vaccination.  I think it’s a combination of MAV (yes I’m having it almost daily, luckily this vertigo isn’t as intense as my vertigo from the Meniere’s.  It is easier to get through.), some medication, and probably just some of the stress from everything.   Plus, maybe some of the medication.

I am putting together a post about my journey on my way to getting a Cochlear Implant (CI), mostly it’s a lot of waiting.  Next week I tell them which processor I’ve chosen, and I find out where we are with the insurance.  I’m really hoping this will happen soon.  I’d like to have it turned on by my birthday…what a present that would be!

In the next post, I’ll explain more about what is going to happen, which processor I’ve chose, and a bit more about the process I had to go through to get qualified for the CI.

Until then, I think I’ll take a nap.  After all I only slept 12 hours last night.  : )

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