Tag: migraines

A Week in Pain

On By WendyIn Chronic Illness17 Comments

This past week I didn’t write much about me.  I have been way too concerned about my friends, luckily she seems to be doing much better (blood pressure was normal this morning!!).  She’s still experiencing some wicked headaches, I’m hoping those will subside soon.

I’ll update you more on her situation soon, but this post is all about ME.

image from http://www.posters.ws

Warning…the following may be considered Too Much Information for some people.

Over a week ago, I once again had a day filled with urgently running to the bathroom because of extreme diarrhea.  By the end of the day I was having painful spasms in my intestines all the way through my anus, with just little bits of fecal matter coming out.  I was miserable, but not as miserable as I was when I woke up with severe pain around my anus early the next morning.  I’ve heard of hemorrhoids, I think I’ve even had small ones before, but this was different.  I was in so much pain.  I had a huge lump around the side of my anus, it was hard, and very, very painful.  For three days I was in bed with ice packs between my cheeks.  I had a prescription for anti-inflammatory cream because of the severe rash I had around my anus a few months before, so I treated it with that also.  Unfortunately, Stuart just started his new job and couldn’t take time off to run me to the doctor, and from everything I saw on-line, there wasn’t much they could do.  Yes, if it doesn’t go away they can remove it, but let’s not jump to that conclusion just yet.  After a week, it’s still there, but it’s not red and extremely tender any longer.  It’s not as hard.  It’s gotten a little smaller, but it’s still pretty big.

I almost didn’t write about this.  I was so embarrassed.  I’ve written posts about my husband having to take care of my personal hygiene, and how I’ve lost control of my bladder and bowels during a Meniere’s attack, but I was embarrassed to tell about the pain and suffering I was going through because of a hemorrhoid.  When you hear the commercials, or even read articles, they talk about the “itching and burning”, it really sounds like it’s no big deal.  The pain I was in for about 3 days was horrible.  Possibly more so because of where it was, but I never thought hemorrhoids could be so severe.  A hemorrhoid is a swollen vein.  That sounds rather innocuous doesn’t it?  I always thought just a little rash type of thing, I’ve had little bumps form there that itched and burned, I figured they were hemorrhoids, and I still think they were.  As I said, I just never knew they could get so big and painful!  I made the mistake of actually looking it up in Google Images….those pictures are the worst of the worst!  I soon realized what I was going through was nothing compared to what could happen.

So the next time you hear someone has hemorrhoids, don’t think it’s just a little discomfort, it can be a very major thing.  I still may have to go to the doctor about mine, but I’m so relieved it doesn’t look like some of those photos.  *shudder*

Next complaint…OK, I’m complaining a bit tonight.  I’m not whining, NO really I’m not, I’m just annoyed and complaining a bit.

I’ve woken up with a migraine every day for over a week, and I can’t get in to see the neurologist Dr. Kaylie wants me to see until early March.  I’m so sick of these headaches.  The only medication that helps is Maxalt, but I’m only allowed to get 18 of those per month.  This is a migraine abortive medication. You are supposed to take one at the first signs of a migraine. If I have to take 2 per day to get rid of my migraine, I’ll be out in 9 days, even if I only have to take one, I’ll run out in 18 days.  What do I do for the rest of the month.  The pain killers help a little, but it doesn’t do much.  Dr. Kaylie asked me today, what I was calling a migraine, could I describe it.  I’ve been having migraines since I was a teenager, of course I can describe it.  I explain, I’ve been waking up with severe pain, normally on one side of my head, sometimes I see flittery movements that aren’t really there, but not always.  I’m nauseous and sometimes throw up.  I can’t stand the light….he said how about sound our smell….I told him I can’t stand any sensory input, even too much touch hurts.  He thinks the new neurologist will be able to help.  He and Dr. Gray work closely with her.  So I’ll change neurologist, let’s just get this pain to stop!  (yes, I know I’ve had a headache very day since I was 16, I don’t expect the pain to stop, but if we could keep it at maybe a 2?  That’d be nice.   OK, enough complaining over that.

See not too much complaining.  (Just wait for the next post…I had a day at Duke Medical Center today that seemed to be one pain after another…literally.)


Quick update – The little family is doing fine.

On By WendyIn Pregnancy Complications8 Comments
Penelope and Chris on New Year's Day

My friend and her husband have arrived.  Not as much to worry about as I thought.  (Yes, insomnia played a big part in all of that.)

Turns out she doesn’t have preeclampsia, so all the rules have changed.  She had a lumbar puncture and found out her cerebrospinal fluid pressure was way too high!  I sure can relate to that huh?  So they drained some of the fluid, and they are hoping to keep that under control.  She may actually make it to term!!  (yes, that means they will be here longer, but that’s ok.)  They don’t know if they can keep the intracranial hypertension (the fancy name for high CSF) under control, or if it will turn into preeclampsia also, so they have to keep a close watch on her.  Of course, we are hoping she can carry to term, and will not have to spend any more time in the hospital before delivery.

She can’t do the stairs much just yet, but that’s mostly because she’s so sore from the lumbar puncture.  She’s still having headaches, they drained a lot of fluid, perhaps too much too fast (IMHO) so it’s taking a little while for her body to regulate the pressure.  Hopefully the headaches will ease soon.  Right now she’s sleeping.

Penelope is such a lovely person, and her husband Chris is so gracious, I don’t think this is going to be very stressful on me at all.  Actually, it could be very helpful in many ways.

I was feeling a bit anxious about Stuart having to go to Alabama for a week, probably the week of the 13th, if they are here I will feel so much better.   I didn’t want  to miss our sign language class, so I plan to drive to class that night, I think I’ll be fine, but just needed to know if I got into trouble there would be someone I could call for help.  I’ve already mentioned it to Chris, and he was happy he could help.

It completely slipped my mine last night that Chris is a cook!  He’s already thinking of creative things he can make that are meat all our dietary restrictions.  He even assured us that he knows how to be careful with gluten products.  He’s offered to clean house, cook…anything.  I think he just needs to relax a bit.  After a while, he can worry about doing more things around here, but for a little while, I think they just need the peace and quiet that is our home.

They have both been gushing about how wonderful it is to have a peaceful place to stay.  They are so worried about wearing out their welcome, but I told them, that we’d just treat them as if they were roommates.  Their room is theirs, our room is ours, the rest of the house is community space, and as long as they don’t expect us to wait on them hand and foot, they shouldn’t be any trouble at all.  I don’t get to see Penelope nearly enough, I haven’t seen her in a couple of years at least.  I’m happy they are here, and so glad we get a chance to renew our friendship.  (not that we haven’t been friends even though we have been apart, but this is a great chance to get close again.)

We may move the little TV in their room for a little while, when Penelope feels more like moving around we’ll hook the cable box back up to the big TV down stairs.  Stuart and I rarely watch TV, we’ve actually been thinking about getting rid of cable.  When we watch shows we normally watch them from the computer.  It’s easier to watch what we want when we want, and not have to rely on the DVR to record the shows we want. (it often screws things up).  The only thing I really watch on TV live, is cartoons.  But I can always pull those up on Netflix.  (yes, I am love cartoons.  Just like a kid, I can watch them over and over and not get tired of them.)

I love that we are able to offer our home to our friends.  They are special people.   It also makes me feel less isolated, and needed.

I will admit, my husband actually made me a bit more nervous about things last night.  When he said he didn’t know if he could handle people being in the house for so long, I got worried.  Then that jumped to wondering all about what they may need, how we could work things out…ect.  But now that they are here, I think everything will be just fine.  (just liken you all said…I should have known.  Thank you my friends for the reassurance, and guidance.)

About my sleep.  Once again I didn’t get to sleep until about 6am. I woke up at 1pm, right before they arrived.  Again, I had the terrors while falling asleep feeling like everything is spinning around.  Again, I had bad dreams, not nightmares, just troubling dreams.  and Again, I woke up with a headache. Not severe, thank goodness, though it soon turned into a full-blown migraine.  I have to figure out a way to make these things stop.  I know I don’t have much control over the migraine issue, I’ll have to see the neurologist if this continues after my recovery period is over.  But you would think something could be done about the spinning and dreams.  Sometimes I’ll take a Valium a little before bed, and that helps with the spinning sensation, but it makes my dreams a bit freaky sometimes.  And I’m not too sure if the doctor would approve of me taking a Valium every night.  I’ll ask him on Monday.

And about dinner.  I just tasted the sauce and meatballs, oh my goodness, I will have to post this recipe.  How delicious!  And so easy.  Stuart loves meatballs but I always hated making them.  Now, with this recipe, I can make them much more often.

Turns out Penelope can’t eat the sauce at all.  She can’t eat beef either, or tomato products.  (I think the tomato products may just be because of the pregnancy and heartburn, but I’m not sure.)  Chris, is going to make her some pasta with a little chicken, spinach, pesto….  Yes, as I said he can cook!  She won’t know what she’s missing though, these meatballs are wonderful.

Round and Round we go, when it stops, no body knows

On By WendyIn Chronic Illness16 Comments

Yes, after writing such a positive post about all the things I’ve been doing lately, I’ve spent the last two days in bed.

Oh my aching ear! image courtesy of dreamtime.com

I have an ear infections, AGAIN!  At least I’m pretty darn sure I do.  The left ear, the one that I recently had surgery on, started draining more (it has been draining since surgery, this is normal, but it was clear and getting to be less and less.  It drains out of my ear because I have a tube in that ear.)   It started hurting, and the consistency of the stuff draining out looks like puss.   I’ve been running a low-grade fever, mostly at night.  And I feel very icky!!  Ugh!  So the world is very off-balance.

Please, don’t think ill of me, but I have about half a bottle of the Cipro Ear Drops my doc gave me last time, so I am treating myself.  (I would normally never do this, but I’ve had so many ear infections, I pretty much know that’s what it is.  I know…I’m recovering from surgery and should get it checked, if it’s not better Dr. Kaylie will see it on the 30th.)  I just didn’t want to deal with making an appointment, and going to Duke, ect ….ect….just days before I have to go in for blood tests, an MRI, and visit Dr. Kaylie.   Also, I didn’t want to suffer all weekend when I could get the medicine started.

Human Gyroscope (image courtesy of http://www.schriever.af.mil)

Yesterday and today have been a bit rough.  I feel like a human gyroscope.  My head feels like my brain is lose and moving around.  I was sitting on the toilet last night and the tile on the floor wouldn’t keep still.  They kept going round and round in a clockwise spin.  Ahhhh!  I hate this, but at least I’m not throwing up for hours on end.

The weather has also changed, so that is a contributing factor and I’m fighting migraines.  To top it all off, I’m just about to start my period.  That always throws a wrench in things.  Not a happy girl right now, but I know it will get better, so hope is always on the horizon.

Does anyone else have a really hard time going to sleep because of spinning?  Even when I’m not feeling off, when I close my eyes and try to go to sleep I will start to feel like I’m moving.  I jerk, and have to calm myself.  Over an over…I’m actually afraid to try to sleep now.  Many nights, I don’t get to sleep until absolute exhaustion overcomes me.  Normally between 3am and 6am.  Last night was a 6am day.

However, another obstacle to my sleep is pain.  Headaches, muscle aches, hips…ect.  It’s all worse now that the weather is colder and it’s raining.  But I can’t live on pain pills.  What to do, what to do?  We know sleep aids just don’t work for me….I’d really like a good nights sleep, preferably on a regular basis.  Exercise would probably help, but that’s just not possible right now.

Whew…a lot of whining today huh?

Don’t worry, this is just a little bump in the road, one step at a time, one day at a time….the sun is right over the horizon…I can feel it…and know I’ll be back to my normal positive self in no time.

**Please note, I have been reading all my friend’s blog entries, thanks to my new phone, I can read your blog entries anywhere.   I really need to acknowledge a couple of posts here, but I haven’t been feeling up to par, and simply haven’t been on the computer as much.  I’ll try to catch up on everything soon.  But I may miss commenting, please don’t be offended.  I’m still reading, and thinking of each and every one of you.

SOPA and PIPA dropped by Congress! And Good Days.

On By WendyIn Chronic Illness14 Comments

Yay!  The Blackout worked!!  SOPA and PIPA were dropped by congress today!!!  I’m so thrilled!

I’ve had some good days recently, unfortunately today isn’t one.  I woke up with a migraine today that has left me feeling icky.  Meds worked but left me feeling a bit off….then headache returned.  It’s minor right now, waiting to see if I need more meds.

On to the Good Days!

This photo is not enhanced. The sky really was that blue!

Remember when I said, I was going to take advantage of every good day and live it to the fullest?  Well, I’m keeping my promise.  Now, what one might call living life to the fullest, and what I call it, may be vastly different things.  Just remember for about 6 months I was barely able to get out of bed, so the small things mean the world to me!

Has a wonderful day earlier this week, just enjoying the unseasonable warm weather.  As you can see from the photo above, taken from our back yard, it was a beautiful day with a bright blue sky.  This color sky is unusual for our neck of the woods, I haven’t seen a sky this blue since moving from California.

On Wednesday had my eyes examined, and have new glasses on the way!  Afterward, I didn’t want to go home, so Stuart and I went to the mall.  Just window shopping really.  He wanted to try on some shoes he was interested in to decide if he really wanted them.  He loved them!  So, surprise!  I ordered them for his birthday.  Of course, they arrived today, and I couldn’t wait to give them to him…so he got his birthday present early!  (his birthday is February 6th, shh, don’t tell him, but I have another surprise planned.)  He’s so thrilled with his shoes, he’s been wearing them ever since he opened the package.

We walked all around the mall and had a nice afternoon together.  That night, I was in much pain.  My hips and lower back…oh my goodness.  I took a hot bath with Epsom Salts, and felt better, but still had a hard time sleeping.

I’ve been in the kitchen quite a bit this week.  You all know how much I love that!  I have a lot of things to add to Wendy Cooks!  We bought some plain ground pork and I made Italian Sausage without onion or garlic!  I cooked that with potatoes, and kale.  What a nice dinner.  The next day I made Sticky Pork Chops.  Served those with roasted green beans and rice.  Stuart’s feeling spoiled.  He’s so happy I’m cooking again.  We also made a big pot of chicken stock. (Stuart actually got this one going.)

This is Sandy and Max while we were traveling across country. See how well they do in the car together?

Yesterday we took the furry babies to the vet.  Sandy really just came along for the ride.  She did have a pedicure, but the main reason she was there was to calm Max.  It’s so funny, Max really loves his dog.  If we take him to the vet, he does so much better if Sandy is with him.  Max got his annual check-up and shots.  Our vet is so in love with our pets.  Sandy is referred to as the “Wonder Dog!” If you read my blog regularly you probably know this, but Sandy is 19 years old, she has bladder cancer, cataracts have taken most of her vision, and she’s very hard of hearing.  In July of 2010 we were told she had probably 3 months to live, but she may last up to a year.  Well, she’s still going strong!  Still runs and plays…she acts like a dog less than half her age!  Our pets also have very good temperaments.  They don’t fight the vet, as long as they are together, and mommy is near they have no troubles.

Last night I had a challenge.  We took a friend out to dinner who is moving away for a new job.  She wanted steak, so we went to the Texas Roadhouse.  If any of you have ever been to a Texas Roadhouse, you know how noisy it can be.  Normally they seat us in a booth with a very tall back, it’s much easier for me to hear if there is no noise behind me.  This time, we sat in a booth with a low back.  It was a challenge for me to hear.  Stuart sat to my right, on my hearing aid side.  Our friend sat across from me.  Luckily, she has a voice I hear pretty well, and she remembers to look at me and speak clearly (most of the time).  I think I only had to ask her to repeat something 3 times.  Yay!  Stuart on the other hand, I could barely hear.  It’s amazing how much I depend on lip reading (they call it speech reading now, I don’t know why).  We stayed at the restaurant for nearly 3 hours.  So,I feel I passed this challenge fairly well.  I was so excited!   But I know it would not have gone as well with more people, or with someone who has a voice with a frequency I can’t hear well.  (I’ll take the victory though! Eating out with a friend, something I haven’t done in a VERY long time.)

Unfortunately, the GI stuff hasn’t gotten better.  Looking forward to find out what the dietitian has to say about getting the Fructose Malabsorption under control.  I’ll be seeing her Wednesday of next week.

Whew, today is a bit of a rough one.  My head hurts.  Think I need to get off of the computer and take some more pills.  I planed on making Spaghetti tonight with the rest of the Italian sausage.  We may have left overs instead.  Unless I can talked my dear hubby into making the spaghetti.  It’s times like these I wish I could just eat sauce from a jar, but alas, it’s not to be.  Plus, homemade is so much better!

Help End Federal Neglect of Headache Disorders

On By WendyIn Headaches, Migraines5 Comments

Please look over the following flyer and take a moment to sign the petition that urges Congressional hearings on the impact of migraine and headache disorders.

If everyone who has chronic headaches, or knows a friend or loved who does, would take a moment to sign this petition, I dare to say that would include nearly everyone in the United States.

Everyone reading this post knows at least one person who has chronic migraines…ME!

Won’t you please take just a moment and sign this petition, and if you could, would you please ask everyone you know to sign.  This could change many lives!!

thank you all for hearing my plea!

The New Year starting out…O! Wow! and Ow! – updated…see end of post.

On By WendyIn Chronic Illness10 Comments
New Year's Eve 2012

If I could feel the way I have since New Year’s Eve Eve, December 23rd, minus the migraines, I would be very happy!

Every day for the past….I don’t know how many…days I’ve woken up with a migraine.  Most days I can take something, and it ebbs enough that I can do something, often I have to take something numerous times a day, but at least it has been tolerable after taking the medication.  Unfortunately, one of my medications, I can only get 18 a month, so if I have to take 2 a day to help with the headaches they won’t last very long.  My doctor said we need to wait 3 months after surgery to start trying new treatments for the migraines.   We need to see what this will do first.  One month down!  Just two more to go!  (this is the first day since the 30th, that I have spent the day in bed.  My head hasn’t eased up much today, for a little bit here and there…like now..but most of the day I’ve spent in darkness with a warm hat on my head (I found this helps, I don’t know why), trying to sleep as much as possible.)

New Year’s Eve is usually very hard for me.  As I’ve mentioned before my mother’s birthday was New Year’s Day, and it hits me hard.  I still miss her terribly.  This year, Stuart asked a couple if they’d like to join us, hoping it would help me get through the rough time, and make things happier.  But I woke up with a migraine from Hell.  I couldn’t stand any light, I was nauseous, and I just wanted to scream!  So we felt we should cancel early, just in case the pain didn’t subside, giving our friends time to make other plans.  Luckily, after much medication, I felt better.  My headache wasn’t gone, but it never is, however, it was much better.

I decided to try to work in my studio a bit.  Something I haven’t done in months.  yay, for milestones!  I got part of my mask painted, thank you Judy, I’m thinking about both my inner face and outer face while working on it.  (if you’d like to know more about this please visit Judy’s blog, Creativity to the Max.)

We decided to have a special dinner that night, one we didn’t have to cook.  So when Stuart went to pick our dinner up, I decided to make it very special.  I set the table all pretty, and put candles on it.  I even got pretty myself.  I put on a skirt and nice top, and even makeup!  Stuart was VERY surprised!  And I have to say, I think that was the best steak I’ve ever had!  We haven’t done anything like this in a long time.  It was very romantic.

It was still 6 hours until midnight, so we thought we’d start a puzzle.  We worked on it for about an hour, then I started to get too sore, and my headache was getting worse.  So we headed upstairs, I took some more meds, and we watched a movie.  By midnight I was feeling good again, and a bit frisky.  (hehehe)  We were watching and waiting for the ball to drop, and I started coming on to my husband….one thing led to another, and we rang in the new year with the Big “O”!  Yes, it hurt, but it was so worth it!  We did elevate my hips a bit, and it helped with the hip pain!  Yay.  (Milestone number 2!)  Now, that helped me emotionally too!

On New Year’s Day it was 65F degrees here.  I knew that temperatures like this would not last long, so I had to get out of the house.  We needed something from the grocery store, so off we went to Whole Foods.  I thought we could get the gluten free bread I like there, but nope.  Every time I go to Whole Foods I’m disappointed.  We started to go to the store we know has it, but it’s more than a 30 minute drive, and I was hungry and getting tired.  We stopped to eat to see if I’d then feel like going, the food was good, but I didn’t feel well afterward.  I don’t know what I’ve been getting into lately, but I’ve been having GI symptoms a lot!

We were both tired, and I wasn’t feeling great, so our New Year’s meal would have to wait.  I can’t have Hoppin’ Johns any more any way…(very sad face).  I can’t have legumes, and black eyed peas are one of the main ingredients…I really miss beans!

Here come another milestone, I cooked on January 2nd!  Stuart helped a little, but I did the main cooking!  So excited, I really like to cook, and haven’t been able to in months!  I made collard greens (a must in the Southern parts of the US, collard greens represent money, so if you want more money throughout the year, you eat collards, another part of Hoppin’ Johns).  But I cooked them a bit differently.  I sauteed them with bacon, Mirin Sauce (a sweet rice wine used in Asian cooking), a little Rice Vinegar, and sprinkled with celery seeds.  They were very tasty.  We planned to have ham, but couldn’t find one that wasn’t way too big, so we cooked up a hot dog for each of us, and I had some left over mashed potatoes.  It was actually a pretty darn tasty meal!  (before everyone with Meniere’s freaks out about how much salt I ate,the bacon was low salt, and so were the hotdogs, plus I only ate one.  However, I’m not sure a low salt diet has helped with my Meniere’s symptoms at all.)

One more good thing happened, but it isn’t finalized yet, so I’m afraid to mention it and jinx it.  (It has to do with Stuart…you can probably guess.)

I started to make up a list of things I want to accomplish in 2012, but didn’t get far.  I realize I can’t really plan much and just get upset when I can’t accomplish what I plan to.  I really, want to lose some of this weight, and be able to exercise some.  This I will figure out how to do!  Even if I get to be just as sick as I was for the past 6 months, I’m going to figure out how to exercise.

As you see at the top, Stuart took pictures of me on New Year’s Eve, when I saw them I cried.  I thought, that can’t be me!  This woman is so overweight, and old.  I don’t want to feel that way about me.  I have to find a way to get my body image self esteem back.  The picture I published at the top was the best.  There is another that I feel shows every hard thing I’ve been through over the past couple of years.  Following you will see a photo of me that was taken just before all of this started happening, and the photo that was taken on New Year’s Eve that I feel, shows the pain I’ve endured.  I’m only showing these to show how much I’ve changed in a relatively short period of time.

**I’d like to say, the weight bothers me mostly because of the added health issues.  I now have non-alcoholic fatty liver, and very high triglycerides.  I will not be able to get control of these until some of the weight comes off and I can exercise.  Yes, my body image has taken a bit of a hit, but my husband thinks I’m beautiful, and desirable so that’s a confidence booster.  However, the fact that I get out of breath so easily, and have a hard time getting up at times.  (the tub is a big challenge.)  With my hip issues, added weight is not a good idea.

Wendy Dec. 31st 2011 -(yes, it's a bit out of focus, sorry)
Wendy - Late Fall 2009

Dark Days…I’m having a rough time…and a request.

On By WendyIn Chronic Illness17 Comments
Darkness and Disequilibrium Envelope Me

I’ve started a number of posts lately and haven’t finished any.

I’m having a rough time lately.  I feel the darkness creeping over me, sucking the hope out of me.  I’ve had this happen before, and I always pull myself out of it, but it’s hard.  Right now, I just wish I wasn’t.  (Don’t worry I’m not suicidal.)  Sometimes, I just wish, I didn’t exist.

We watched It’s a Wonderful Life on Christmas, one of the only true traditions we have.  We usually watch it on Christmas Eve, but we had a friend come over on Christmas day and we like to watch it together.

This movie usually gives me hope.  It makes me believe that I could have made a difference and not known it.  Just maybe I’m important in some way, that some things would be worse if I hadn’t been born. This year part of this movie hit hard.  One of the last parts of this movie made me so very sad.  Clarence, the angel, leaves a book for George Bailey and in it he writes, “Dear George, remember no man is a failure who has friends…..”  George was surrounded by people who loved him, who he had helped in so many ways that they were all willing to help him, without even knowing what caused his troubles.  (if you haven’t seen the film, George finds himself in a huge mess and considers suicide.  Clarence, shows him what life would have been like if he hadn’t existed.  It was a pretty grim picture.  After he sees this, he wants to live, then he finds out that his friends all want to help him.)

I have been feeling I have a lack of true friends lately.  Friends I can really call on.  I know I have a few.  However, not that many. Does that make me a failure?

I’ve had a couple of friends this year tell me I haven’t been a good friend.  That I’ve ignored them and haven’t worked on our friendship.  That was very hard to hear.  Especially from one of them.  I felt I’d been there for her over and over, we had been friends for years and years.  (though not always in touch)  All of a sudden, she felt she was giving all the energy in the relationship and I wasn’t giving anything.  I think my illness, and my depression about it sometimes scared her.  But I don’t think that was all.  We are back in touch, but it’s not the same.  The incident has never been mentioned.  The other, I could understand how she could see things that way.  But it was never intentional.  And now, I feel odd about our friendship, and don’t know if it will survive.

I’m lonely, but I have a hard time being around some people.  Losing my hearing is hard.  Often, I’d rather be lonely alone, than in a room with people whom I feel isolated from because I can’t hear them.  I do well one on one, but in groups…it’s so hard.  I’m also having a rough time with envy.  I want to be happy for my friends, and experience joy that they can do so many of the things I can’t.  Sometimes I can do this, other times it just eats me up.

There are so many things that I’ve been having a hard time with.

I was reading back over my blog from this year, and my journal from last year, and found I’ve been on a sickness merry-go-round that goes something like this….hell – much better – hell – much better….over and over.  I’ve been given hope and felt better and then had the rug pulled out from under me so many times I’m dizzy just thinking about it.  (pun not really intended, perhaps I should say, dizzier?)

I keep thinking, even if this surgery ends up working, when will it stop.  Will I have 2 months…4…12???  (Dr. Kaylie said to give it 3 months before we really judge it.  This really takes a long time to heal.)  When I had this on the other ear, I had 4 months vertigo free, then I had a spell of 11 days with a Meniere’s attack.  Hearing down, tinnitus up, and vertigo on and off…for 11 Days!  But caused by the other ear.  Then I started in the Cerebrospinal fluid study, and things have been up and down since then.  For over a year.

In the past 2 years I’ve had 9 decent months.  Not a bad number, but they weren’t great of course, I’m just talking 9 months where the Meniere’s was better.  5 months where the headaches were better.  And very, very few where my GI system was better.  I even had a few where the pelvic and hip pain were better, but not many.

Speaking of GI issues.  I’m still having diarrhea very often, and have gained so much weight.  I’m not keeping much food in me, almost every time I eat I’m running to the bathroom.  Yet, I’ve gone from 147 lbs in the beginning of 2010, to almost 200 lbs. now.  (and most of that I gained in 2 months time, in the fall of 2010)  I hate to look at myself, and the idea of people seeing me like this, or having my picture taken terrifies me.  I grew up in a house where my father would often tell me I needed to lose weight, and would talk about others who were, what he considered, over weight.    I knew even if he didn’t say it to my face, he would be calling me fat behind my back.  (this caused a teen eating disorder)  I haven’t seen him in long time, and won’t now.  The idea of it, just hurts, I could not bear the thought of being told I’m fat, or knowing he would be telling others how fat I am.  (BTW, this is not a man who has been in shape for as long as I can remember.)

So to sum that up, I do not have the Fructose Malabsorption under control.  Elimination Diet started today!

We watched Despicable Me on Christmas Eve.  One of our favorite movies.  I think this was the 4th time we’ve seen it, and still laugh so hard.  But it also makes me cry.  This time more than usual.  When he falls in love with those girls, and they become a family, it’s so touching.  All I could think about was the fact that earlier this year we were making plans to become foster parents.  Now we’ve given that dream up.

I’m still stuck in bed most of the time.  When I get up I get the worst headaches!  Also, I feel like I’m on a very rocky boat most of the time.  It’s horrible.  I’ve felt unsteady for a long time, but now, I walk a bit like I’m drunk.  I have to walk very slowly.  To top it off, I feel sea sick.  Strangest thing about that – the only time I’m not feeling nauseous is when I’m eating.  (is that weird or what?)

This is also a difficult time for me because my mother’s birthday was New Year’s day.  It was such a special time when she was alive.  No matter where I was, at some night club, or party, or what ever….as soon after midnight as I could I would call my mom and wish her a happy birthday!  I remember one year I was at a bon-fire, and I had to drive about 10 miles to find a phone so I could call her.  Now, most years, when midnight strikes, I’m just home.  Stuart often doesn’t even make it to mid-night.  He doesn’t like to be on the road on New Year’s Eve because of all the drunks.  I understand, but it’s hard on me.  He promised last year, this year we would do something special.  We were going to check into a hotel, party in their and we wouldn’t have to drive anywhere that night.  Perfect.  But, as you can probably guess, we can’t do that.  Plus, I’d probably be miserable because of my hearing troubles.  So what to do?

I don’t like it when I get like this.  (I logically know part of it is PMS, and I will pull myself out of it, but it’s a rough time.)

I’m certain I can deal with whatever the future has in store for me, but right now, I hope it doesn’t throw me another curve ball too soon.   I need to catch my breath, and renew my outlook.

Now for the request.

As I’ve mentioned on here, I started a goal list for the Day Zero Project.  You list 101 things to do in 1001 days.  I have one thing on my list that should be easy, but it hasn’t been, and I was hoping you guys could help.

#26 on my list is to Make a list of 20 things that I like about myself and stick it to my mirror.  (to be read every day)

I’d like to change that to Make a list of 20 things others like about me and stick it to my mirror.

Can you help?  Can you tell me something you like about me?  Not only will it help me check something off my list, I think it would help me during this dark time to hear some good things about me.

thank you all.

Day 8 – Much better than yesterday!!

On By WendyIn Chronic Illness7 Comments

Today I can get up and go to the bathroom on my own!!!  Well, with a little help, and it wears me out every time…but walking those 10 feet is a great milestone after being stuck in bed for a week.  To go from not being able to lift my head, to being able to walk those 10 steps to the toilet…what joy!

With Stuart’s help, we even brushed my hair today.  I do believe a little family of mice were about to move in, they’d already made big nest!  Thank you to whoever, invented the detangling spray..  Perhaps, Johnson and Johnson – No More Tears detangler…I have an off brand, but still no tears!  It did wonders.  The mice will not want to take up residence now!

The pain is minor to moderate, depending on the time.  The headaches are still there, sometimes much worse than others.  Pain medication or Maxalt seems to be helping with those.  I’m still seeing blood from my ear, but nothing yellow, and it appears my temperature has returned to normal!

I really didn’t expect to have such strides so fast, but I’m thrilled that I was wrong.  I know, I may have some set-backs.  Especially since the feeling in my ear still isn’t completely back.  Let’s hope that the severe vertigo stays away!  (we even got my ear ring back in.  I thought I wouldn’t see that ear ring back in.  When I turned 35 I had my upper ear pierced, sill I know, but it meant a lot to me.  So we took advantage of my ear still being a bit numb and put it back in!)

To close…a drawing I colored last night/today.

Christmas Tree - by w. Holcombe

 

…Welcome Christmas bring your cheer
Fahoo fores dahoo dores
Welcome all Whos far and near….  
                                                                                                                                                                           
an excerpt from Dr. Seuss’ “Welcome Christmas Song”
Happy Holidays to all my friends – far and near.

 

 

 

 

 

 

 

 

 

 

 

Endolymphatic Sac Surgery – Recovery Day 5

On By WendyIn Chronic Illness11 Comments
PAIN - by W. Holcombe

Today is about the same as yesterday.

Still can’t move my head without the world spinning.  I tried to ease myself up…first slowly into a sitting position, waiting a long time each time I raised a little more.  I thought I was at the point of sitting up, but boy was I wrong.

Dr. Kaylie said this kind of thing is possible, and to take more Valium.  From the people I’ve talked to who have had this surgery, I think it’s a bit more than possible, I’m thinking it’s pretty common.  The Valium helps a little, I can move my head a little bit, and don’t feel like I’m going to barf all the time…thank you to whoever invented Phenergan!  I’m glad to hear this will end, if I thought I had to live like this all the time, I think they would have to lock me away because I would go crazy.

Stuart and I have are handling things pretty well.  I’m less horrified by him having to help me with all my personal needs.  (I must say, I never realized I peed as much as I do, I knew I drank a lot, but wow!  You really notice it when you have to ask for help with it, you become acutely aware.)  My husband has such a wonderful attitude, and is so generous and compassionate.  It’s funny how we never seem to see the virtues other’s see in us.  Stuart does not see that he is a very good person!

My ear is draining now.  The swelling is less, I’m wondering if that’s why it wasn’t draining?  Too swollen?  The drainage is very bloody.  And I have to change the cotton in my ear about every hour.

My biggest challenge now is sleeping.  I have a very hard time falling asleep because when I close my eyes the world spins even more.  Finally, when I’m so exhausted I will drift off.  Waking is even harder on me.  Every time I wake up I feel worse.  The vertigo is worse, the pain is worse….

I sure hope this starts to level off soon.  At least to the point where I can get to the bathroom.

Wouldn’t it be a great Christmas present to have this surgery work, and have my vertigo greatly reduced?  (I hope I’ve recovered to a manageable state by then!)

I do so wish Stuart had some help.  He keeps getting mad at himself because he can’t get more done.  Taking care of me, looking for a job, cleaning the house, doing laundry, taking care of all meals, taking care of the pets…but he feels he’s not doing enough.

Yes, we need to get some things on eBay, the sooner the better, for Christmas.  (he has some very expensive Lego sets that could make someone very happy, and us a little more solvent.)  We also need to put the Honda up for sale.  That would help our finances a lot.  These things are important, but he can’t do it all.  Yes, he’s a super man, but he’s not Superman.  But you know, I can’t see Superman actually cooking and cleaning, or being a nurse maid.

I have been running a low grade fever, usually at night, but it’s not high enough to worry about.  I’m pretty sick of TV, and I can only look at the computer for so long.  Reading is alright, but again, I can’t do it for long.  Words just start running together.

Like now….

 

 

Recovery Day 4

On By WendyIn Chronic Illness15 Comments

This has been the worst day yet.

Wendy with Headache and Vertigo - photo and manipulation by W. Holcombe

I knew it could be this bad, I’ve talked to many who had a very rough time with recovery from this surgery.  But I had it before, so I thought my recovery would be about the same as the first time.  Much pain, but not so much vertigo.  Boy was I wrong!

If I move my head at all the world spins, very violently.  This vertigo isn’t like most attacks, it will be calm, if I keep my head still.  I can’t lift my head, I can’t turn my head, I can’t sit up, I can’t get out of bed to the bathroom…that’s right I said I can’t walk the 10 steps it would take for me to get to the toilet.  I’m very lucky that my husband is so very supportive, and is not squeamish.

(caution for those of you who get grossed out…do not read this if you do.)

To be very blunt, you spouse should not have to empty your bed pan, or clean you up afterward, especially when your tummy has not been happy. To add insult to injury, I started my period yesterday.  You cannot imagine how hard it has been on me to need my husband to help me with female sanitary issues.

The pain is better at times, and much worse at times.  I keep getting very sharp pains through my ear.  And I’m pretty sure the feeling is coming back in the ear itself, so the cartilage pain is beginning.  The headaches, have been many, and harsh.  Other times, I feel very little pain at all.

The swelling is MUCH better.

I have a call into Dr. Kaylie, unfortunately he wasn’t in the clinic today.  Stuart has talked to another doctor, and they feel certain this is just one of those things that can happen.  I’m not running a fever, the site is not red or hot.  So we are not worried about infection.  I keep thinking, if Dr. Kaylie said he wants to see me, how would I get there?  There is no way I could get up, get dressed, go down the stairs, and terror of terrors ride in a car!

I had a tiny bit of drainage today.  I still feel, if the ear would drain, things would get better.  It appears my tube is either clogged or fell out.  But even if it fell out, I would think the hole would still be open a bit.  I know it was open the day of surgery, I closed my nose and blew air out the hole just to check.  I admit, I was a bit scared of going through this without a drainage hole in my ear.  Every person I’ve spoken to who had a rough time of this, did not have a tube.  I was convinced that was the reason I didn’t have vertigo before.  The fluid did not build up.

Here’s to a better tomorrow, and many days vertigo free.

I told you that you may get tired of these posts, I want to make sure to keep up with all the details of my recovery.  As confused as I get right now, I want to make sure if a doctor asks me anything about this, I have a reference.

(sorry about 2 posts coming out today, I had the post for the PFAM carnival written before the surgery.  Just had to proof read it.  Not sure I did the best job of that, considering.  However, it’s due today, so I thought I should post it too.)

Now, I will get off of here before I over do it!