Tag: milestones

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

On By WendyIn Chronic Illness13 Comments

 

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)

 

 

 

 

 

 

A Tiny Bit of Independence Restored.

On By WendyIn Advocate, Chronic Illness, Deaf9 Comments

On the 18th I had an appointment with my neurologist, she is a headache pain specialist, to get the Botox shots for my migraines.  I get these injections every 3 months.  They do help.  No, they don’t take away all my migraines, but I don’t have to take near as much medication, and I’ve noticed the migraines I do have are very often much less severe than they used to be.  Also, No, they don’t work on wrinkles.

fairy doctor
Doctor Fairy: fairiesbynuria
(Please click on image to be taken to fairiesbynuria’s etsy page,
she makes the cutest fairies for all occassions)

My doctor is a little lady, so very cute and sweet.  She reminds me of the good fey (for those of you not into fantasy books, according to Wikipedia, “Fey is an umbrella term referring to fairies, pixies and sprites in the broadest sense“…this is a very simple definition, but you get the idea).  I have told her she’s my sweet good fairy who gives me little bee stings that make me better.  It has become our little joke.  It’s also quite amusing to me as fairies are normally very mischievous and often not of a good nature…so giving me little bee stings would be something I think just might do!  *giggle*

This dear sweet woman has the softest most feminine voice I think I’ve ever heard.  I cannot imagine that she could ever speak loudly, believe me, I’ve seen her try.  She has tried to hard to make sure I could hear her, but I just couldn’t.  Therefore, I’ve never been able to have a conversation with her.  She always looks so sad, yet hopeful, when talking to me.  Sad that I haven’t been able to hear her, yet hopeful that I will be able to some day.  I have been seeing her since before my first Cochlear Implant surgery.  Now I have 2, and the last time I saw her I had recently had the second one turned on.  I still couldn’t hear her.  She looked so….well, sad.

When she walked in the room yesterday the first thing she said was, “How’s your hearing? How are the new CI’s working?”  And I answered her.  I heard her!!!  So I could actually answer her, not stare at my husband waiting for him to answer for me.  She was absolutely giddy!  I know I kept her too long and made her get behind schedule because she and I just chatted for a little while.  I’ve never seen her so delighted.  She told me when she saw my name on the list of patients for the day she was hoping I could hear.  Isn’t that just the nicest thing?  I thanked her for thinking of me, she answered that she thinks of me often.  Wow!  What a great doctor!  And she’s not even my ear doctor!  (Just a note, if you are suffering from Migraines, try your best to find a neurologist who specializes in headache pain, this has made the world of difference for me.  It has given me a better quality of life…at least on that front.  If you want to ask me about my doctor at Duke, feel free to write me.  Look under the About Me page.)

After receiving my “B” stings.  (yes, B stands for Botox…hahaha…I’m being a little silly today too!)  We wrapped up the visit and she started to leave, I came so close to grabbing her and hugging her, but I wasn’t sure about how she would feel about that.  She started out the door, then suddenly came back in and grabbed ME and gave me a hug!  I was so surprised, she was just so thrilled about my progress!  She made my day!  I would have been thrilled at the fact that I could hear her, but to have her get so emotional about it, well that made me feel so loved.

Before this visit I thought about requesting CART (Communication Access Realtime Translation) for my visits to see her.  I decided not to because while giving me the shots she spends a lot of time behind me, and I have my head down so I can’t see anything, a translator wouldn’t help much.  To find out more about CART, please hover over the word CART and click to follow the link to the National Association of the Deaf.  I’m so thrilled I didn’t have to use this service to be able to hear my physician.  Hearing her without my husband’s help was so liberating.  Just a tiny bit of my independence restored.

An Accident leads to overcoming a fear…

On By WendyIn Chronic Illness, Meniere's Disease6 Comments
x-ray of right foot poster image from allposters.com
x-ray of right foot poster
image from allposters.com

On Monday, January 20th, my husband left for Las Vegas (I’ll explain more of this later if anything comes from it).  He left the house at 11am, his flight was supposed to leave at 1pm but it was late.  By 2pm he was on his way, and by 3:30pm I had broken my foot.

I keep thinking how nervous I was about him leaving on this trip.  He’s been away before and yes I was a bit nervous, but this time I was scared.  I just didn’t feel good about it.  Perhaps it was because of the many asthma attacks I’ve been having, perhaps it’s because I realized just how phobic I have become about so many things….I don’t know…but I know that I’ve had feelings like this before, and they seem to be almost premonitions.  Something didn’t feel right….and soon something big wasn’t right.

How did I do this?  Well, let’s see if I can explain, I had to explain it over and over and over…but I will admit here, I’m not 100% sure exactly how it happened.  When Stuart is out-of-town we move my essentials downstairs, so I won’t have to use the stairs while he is gone, I have plenty of food in the fridge, and I’m all settled on the couch.  Oh, and one big thing, I promise not to try to walk around the house without my walker, just in case vertigo hits out of the blue, or the disequilibrium knocks me off my feet. (we all know this has happened….often)  So, I got up to go to the bathroom, wheeling along with my walker.  Unfortunately, our bathroom doors are TINY, and we haven’t been able to find a walker that will fit through them, so I leave my fancy walker at the door and hand off to another walker in the bathroom.  The walker in the downstairs bathroom has little wheels.  The walker in the upstairs bathroom doesn’t have wheels, I’m used to it. I caught my foot on the little wheel and was thrown off-balance a bit.  The world swirled and I stepped sideways and fell up against the wall, only a few inches away, I just kind of leaned up on the wall but my foot turned, and I felt a SNAP!  I’m really not sure which foot hit the walker, or anything, it happened so fast, and I was far from being stable.

I knew somewhere in the back of my head that it was a break.  But I didn’t want to admit it.  I often turn one foot or the other, it always hurts, often swells a little, but is alright.  I just ice it over night and the next day it’s better.  So I packed it in ice and elevated my foot.  Then I looked at it, and it looked a bit too puffy….getting a little blue.  I touched it, it just didn’t feel right.  Dangit!  I was a bit paralyzed as to what to do.  Call an ambulance?  For just a broken foot?  Ugh!  And trying to talk to a 911 operator when you can’t hear them…well that was scary…but really I just couldn’t bear the thought of calling an ambulance for a broken foot.  That’s not an emergency.  I could feel my toes, they weren’t blue, I had sensation all over my foot….not an emergency.  And I was still a little bit in denial.  “Maybe it was a tendon just snapping over the bone.  It might just be a bad sprain….”  But as the night went on, I was more concerned.  I instant messaged a friend who I knew would help if he could, and he would at least calm me down.  He did calm me down, but he couldn’t come help, I understood, he has a pretty severe chronic illness himself and lives about 2 hours away.  Finally, I saw an old friend who I hadn’t seen in a long was on-line, so I gathered my courage and instant messaged her and asked if she could help me.  That was very hard.  She has a family of her own, a 3-year-old little girl….a busy life….and we haven’t kept in the best of touch.  Don’t get me wrong, she hasn’t forgotten me, she surprises me with cards and such, and we see each other on Facebook, but it hasn’t been the same since I’ve gotten so ill.  I haven’t seen her in person in a very long time, we don’t have long phone conversations, it’s different.  I asked if my foot was all swollen and blue the next morning could she take me to Urgent Care.  She said, “Yes!”  So the next morning I texted her…I had to go.

Another fear I had to face, going out in public.  Since I’ve been having so many asthma attacks I’m very scared to go out in public.  So many triggers out there, and only my inhaler to help.  But I did it.  We went to Urgent Care, and it was FULL.  A minimum of a TWO HOUR WAIT to be seen, not including if you need x-rays and such.  So we ended up down the street at the Emergency Room.  I was seen right away.  Then sent to X-Ray.  Then taken to a room…in the children’s ward (that was strange, but I guess they had an empty room there).  The doctor looked at the X-Ray and said I had a spiral fracture of the 5th metatarsal (right above my pinky toe), she said I had to see an Orthopedist specialist.  Then they wouldn’t let me eat or drink anything.  I was there for 7 hours at least.  Finally, the Orthopedic Surgeon came.  He decided surgery wasn’t necessary, and I could have a boot instead of a non-weight bearing cast.  I didn’t realize that there was a possibility of surgery, but I was so ready to get out of there, and I could tell my friend was anxious to leave, I didn’t even ask….just let me go.  Later I looked at all the paperwork, and there was a possibility I needed a pin in my foot since it was a spiral fracture.  They discussed putting me in a non-weight bearing cast, but decided not to because I would be at home alone.  If they put me in that kind of cast they would have kept me at the hospital until my husband came home.  After a little research I’ve learned this is the most common broken bone in the foot, and it takes a long time to heal because there isn’t a lot of blood flow to that area….*sigh*.  I’ll have x-rays again in a couple of weeks if it’s healing well – great, if not, surgery could still be a possibility.  I have faith all will heal just fine.

Whew!  What a day!!  After I got home and all alone, I realized I needed a change of clothes from upstairs, and someone needed to take care of Max, our cat…..so again, I overcame a phobia…I reached out again for help.  I texted my neighbor, she has a key in case of emergencies, and asked if she could come over the help me a bit….I’m a lucky person that I have a neighbor who is such a dear.  I cannot say how much I love and respect this woman!  It took a lot for me to ask her for help, but she came!  She helped, and even just visited with me for a bit.

Stuart came home the next night.  I had taken care of an emergency!  Somethings I probably could have done better, but I did it!  And I’m pretty proud of myself.  Stuart is less tense about leaving me alone now.  (FYI..I did tell Stuart what was going on while he was on his trip.  I thought about not worrying him, but that’s not the way we are, we communicate about everything, and it made it easier.)

Sometimes no matter how prepared you are, something might happen you just didn’t expect and you have to deal with it.  No matter how scared you are.

6 Sentence Story – #HAWMC Day 29

On By WendyIn Life4 Comments

Today’s Prompt: Six Sentence Story. In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences. Check out some here: http://sixsentences.blogspot.com/

Wendy and Stuart - wedding.

Wendy walked toward the ruins of the mission. She saw him standing by the entrance waiting with a smile.  Once he took her hand she had no doubts, this was the man she would spend the rest of her life with. She saw in his eyes he felt the same way about her.  They walked down the aisle together, a new future unfolding before them.

Personify Your Health – #HAWMC Day 28

On By WendyIn Chronic Illness1 Comment

Prompt for today….Personify your health. If your health focus were a person – what would they be like? Describe them. Visually, emotionally, physically, and personality-wise. What kind of person are they?

I’m again using one of the Bonus Prompts.  I liked this one more than the original prompt.  However, once again, I took a different take on it.  Recently I made a mask showing what I looked like on the outside to most people, and then on the inside I showed my true self.  I felt this answered all the questions put forth in this prompt, but with a little creative flair.

Some of you have already seen this, but I think it’s worth repeating, and for those who haven’t, I hope you enjoy!

Outside of Maxk. by W. Holcombe
Inside if Mask
by W. Holcombe
Mask Inside Top
W. Holcombe
Mask Inside Bottom

The Good, The Bad, and The Ugly – all in just a few days.

On By WendyIn Chronic Illness26 Comments

This is not the post I’d planned to write, but life has thrown me for a loop so I’m telling it all….

The Good

On Thursday it was a beautiful day.  The weather was perfect with temperatures in the 70’s F, and clear skies; an amazingly gorgeous day for the second day of February.   I decided to take a drive for the first time since June.  I haven’t had vertigo for over a month so why not?  I went to a small town just north of us, it wasn’t a long drive and I chose that route because there is very little traffic on the road.  The top was down in my little car, and I had a blast!  What a milestone!!

Not so good – we went to our ASL (American Sign Language) class Thursday night.  This was our second class. I’m not sure I’ll go back.  I keep telling the teacher and the students I’m hard of hearing.  I’m so very lost in the class because i can’t hear what’s going on.  If Stuart tries to tell me what I’ve missed then he misses something.  I was so upset, I teared up 3 times, and came very close to just walking out.  To explain some of my frustration,, we have exercises where we each say things in sign language.  Then the teacher will call on someone to translate what the person said, I couldn’t hear what the person was saying so I have no idea if I understood what the person was saying in sign language.  (note, this is just one example).  I do not see how I’m going to get anything out of this class.  Stuart is going to write the teacher.  One huge problem, they allowed too many people in the class.  So there are 16 people in there and I’m the only one who is hard of hearing.  I feel so isolated and sad.  The one place I thought would be more understanding, and help me, is simply ignoring my needs.

The Bad

Friday I had slosh head all day, and was afraid I was catching a cold.  The weather had changed, and we had cleaners come in on Thursday (I’m sure they kicked up a lot of dust), so I   wasn’t that worried about it.  Probably just barometric pressure change and allergies.  Yesterday, I had minor slosh head, better than the day before, still didn’t think much of it since it was now raining.  We decided to go out and do some things.  When we were in Earth Fare (a small healthy grocery store), I turned to look at Stuart and the world spun around.  I tried to brush it off as a little disequilibrium but couldn’t.  We went to the little cafe they have so I could get something to drink and take my pills.  I sat for a little bit but things were not getting better, I had the overwhelming desire to curl up on the floor.  We hurried and bought our little bit of groceries and headed home.  Once in the car I was still feeling horrible and got Stuart to search around for something I could throw up in if I needed to.  I then took another Valium.  I don’t normally take them so close together, but we had a 25 – 30 minute drive home, and I did not want to have a severe attack in the car!  Wonders upon wonders it worked.  When we got home I was still pretty off but I knew the worst was not going to happen.

The Ugly

** some of the following may be too graphic for some readers.

Today I was just waking up and stretching when I felt my husband kissed me.  A pretty nice way to wake up huh?  The first thing I really noticed was how loud the tinnitus was.  My head was still a bit sloshy, and today it was also screaming at me.  Since I was a bit off, Stuart made me some breakfast and brought it up to me.  (oh, I have to admit he does this a lot any way…what a guy!).  After breakfast I felt exhausted and thought perhaps I should sleep a bit more.  I put my sleep mask on and started to doze, suddenly I felt like I was moving.  Stuart walked in the room and I told him, he grabbed me some pills.  I had to go to the bathroom.  He helped me there and left, but I ended up having to call for him to help me.  I couldn’t stand, pull up my undies, or anything.  He rushed in and helped me and nearly carried me to the bed.  By then I was in full spin.  I grabbed a second Valium (it worked the day before!) and Stuart helped with a Phenergan suppository.  *ick*

I kept trying to focus on one spot but the spot kept moving around and around…I was getting sicker by the moment.   I was nauseous, but hadn’t had the tell-tell sign of the extreme heat that usually precedes the vomiting.  Oh…but the diarrhea….I knew it was going to blow if I could make it to the bathroom or not.  I also knew if I moved my head enough to get up and go to the bathroom I was going to start throwing up. What to do?  I was getting pretty upset by this point…all the chanting of affirmations and envisioning myself as a tree with strong roots that cannot be moved were not working…I was starting to panic.

My dearest darling husband created the portable bed pan (a trash can with a liner) once again, like he did when I was stuck in bed for a week after surgery not able to raise my head.  So I scooted my butt off the bed over the trash can, keeping my head very level…and exploded!  Oh my gosh, I had no idea that was going to happen.  Sometimes the suppository makes me really feel like I have to go, but it just dispels what’s left of the suppository and a little bit more.  This was gross.  I was so embarrassed and just completely grossed out.   I kept apologizing and crying a bit.  After that ended, the vertigo started to subside.

Stuart was so wonderful.  He told me he’d much rather deal with the bed pan situation, than for me to throw up.  He said it’s so much easier on my body.  And he’s right, but the diarrhea in the make shift bed pan, and having to have him clean me up…that’s much higher on the embarrassment scale.  I guess I just need to get over that, and I’m so grateful I have a husband that will do anything to help me feel better.  He’s very right though, the vomiting is terrifying, and much more painful.  So I’ll swallow the embarrassment I guess.

I’m still slosh headed, and feeling a bit wonky.  I’m exhausted, have napped a bit on and off, but I keep waking up feeling worse.

 

When we walked out of the store yesterday, with Stuart helping me hobble to the car, I said to him, “Well, the surgery is supposed to make the vertigo 70 – 90% better, they never said it was gone.”  Very stoic of me, holding it all together.  However, once we were in the car and on the way home, I broke down.  I thought about how I drove just 2 days earlier, what if this had happened then?  I thought about how all I wanted to do in that store was curl up on the floor and pray for the room to stop.  What if I had been alone?  I feel like every time I feel I’ve made an advancement and can make some plans, the floor falls out from under me.

Even more reason to live every day as it comes!  I do not regret my drive, and I wasn’t far from home.  If I had gotten sick, I would have pulled the car off the road and called for help.  I would have handled it!  If I had been at the store alone…well, that would have been more difficult.  I probably would have taken my pills and left the groceries.  Gone to the car and called for help.  I’d rather be alone in my car dealing with this than in a public place.  I may worry, but I’m confident if the worst happens I will be able to handle it.

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

A New Day…A New Outlook

On By WendyIn Chronic Illness10 Comments
A Butterfly for Stuart - by W. Holcombe (all rights reserved)

My dear, dear friends, thank you so much for the very kind words that you said about me after my last post.

I kept reading these comments, thinking…”Yeah, I like that about me too!:  Some I hadn’t thought of, but realized after reading them, that yes, that is a part of me.  It made me realize, I can write the list as 20 things I like about Me.  I just needed a little push to remember some of those things.  Thank you!  And I guess, after this past two years, I needed to hear that there were still some things about me that others think are likable.  Thank You Again!

I sat down and had a talk with myself.  It went something like this….”OK Wendy, you’ve been telling people you will just change your expectations of life, since things aren’t what you expected.  Now, You didn’t mean you’d expect things to be bad…no Mam!  You simply think things are different, and you can work with that.  You are strong, and you can find the light that will lead you out of this tunnel!  So pick yourself up, dust yourself off, and get moving again!  Remember, success is getting up once more often than you fall down.”   (yes, when I talk to myself I have a VERY Southern accent, it comes out any time I get angy.  I am originally from Charleston, SC after all.)

So I made a plan.  I have been so sick for so long, I haven’t been taking the best care of myself.  Partially because I couldn’t for a while, but some days because, I just didn’t have the drive.  I thought, what’s the use, I can’t do anything.  Why get dressed?  Why shower?  Why do much of anything?  Even on the days when I could (Physically)….sometimes I just couldn’t (Emotionally).  After my little talk with myself, I decided, it doesn’t matter if I have nowhere to go, if I can get out of bed Physically, I will take care of myself more.  I will get dressed every day, even if I don’t step foot outside.  If at all possible, I will at least go downstairs to work on the computer and do my artwork.  I will try…very, very hard to get out of the house more often, even if it’s just to walk to the mailbox and back.  And last, but certainly not least, I will try my best to be around people more often.

Pretty big change from my last post huh?  Sometimes I think I need to hit that dark place, to make me realize I need to pull myself out of it.  This was a slow decent to a place I was scared of, and I didn’t like myself one little bit.  A friend of mine once told me that he admired how I could pull myself out of times like these.   It isn’t easy.  (plus I’ve been through a LOT of therapy!)  I have bipolar disorder, I can tell when depression is enveloping me, just as I can tell when I’m starting to fly in with the mania.  My psychiatrist once told me that I was more in tuned with myself than any patient he had, I’m grateful for that.  If I feel I’m swinging one way or the other, first I tell myself…this will pass!  I will NOT feel like this forever.  Then I try some exercises my therapist has helped me with, or I meditate, or I read something I find helps…I try to help myself before things get too one-sided.  If I can’t then I get on the phone and call my psych!  That’s what he’s there for.   Luckily, I didn’t have to do that this time.  My pep talk to myself, the affirmations I got from my friends here, and reading some Buddhist teachings, helped to pull me out of it.  (and I have an appointment with my psychiatrist next week, so I knew if that didn’t work, he would be there for me.)

One day, I’ll write more about being bipolar.  I’m lucky I am stable, have been for years now.  When I feel one emotion going too extreme, I know what to do.  I recognize it and can get help before I get to the breaking point.  However, I had a lot of struggles to get here, and there are many people out there who aren’t as lucky as I am.  I think the one factor that made the biggest difference in my life with this disease, is finding the right psychiatrist and therapist.  I’ve seen a few, but they weren’t a good fit with me.  It’s very hard to understand that when you are ill, but I finally realized if I’m not comfortable with the person treating me, I shouldn’t stay with them.  Now I don’t mean, my therapist said something I didn’t want to hear, so I left.  I mean, our personalities didn’t mesh, I didn’t feel I could trust one of them….have you ever been with someone and they gave you this funny tummy feeling?  Like something just isn’t right?  That’s what I mean, that tells me that things aren’t going to work.  Finally I got a good match, and that made all the difference.

 

So…I took my own advise today, and got up, took care of my personal needs, got dressed, put on make-up!, and then I rested!  Whew, that was a work out!

Hubby needed to run some errands, so I decided to get out of the house.  Today I had the least amount of disequilibrium I’ve had in a very long time!  Mainly only when I bent over, or turned my head too fast.  Luckily, I didn’t do that very often.

We went and dropped off some donations, and I bought a pair of shoes, and a purse at Goodwill for $5.00!!  I love Thrift Stores!!  We went to Michael’s to exchange a picture frame for the right size.  Had lunch out.  That’s always a challenge with my hearing, and food issues.  So we went to a place that has one thing I know I can eat safely, I let Stuart order for me so I didn’t have to try to hear the person taking my order, and we sat where no one would be behind me, and a little away from as many people as we could.  It made things much easier.  I found if there is a lot of noise in a place I get dizzier.  On top of the anxiety I’m feeling because I can’t hear, it really makes it hard…but I did it!  We also dropped by the grocery store for a few things.   A busy day.  However, we took our time.  I took rest breaks, and I don’t feel I over did it!  We’ll find out tomorrow.

Once more I want to thank you all for being so kind, and helping me out by telling me things you like about me.  Please know you are very special people.  Look at how you reached out to help me!  How you support me and others.  Please know, that you are loved.

My this New Year bring all of us greater health, happiness, prosperity, and love!  (and anything I may have left out that you are wishing for!)

Cheers!!

Endolymphathic Sac Surgery Update…day 17

On By WendyIn Meniere's Disease9 Comments

Today, we washed my hair!  Wow, a bit of an ordeal, but it was worth it!  I’m glad I have dry hair, but even my hair was beginning to get a bit gross after 17 days of not being washed!   (I can hear the collective…”Ewwww” from all of you right now!)  I did use a bit of the dry shampoo, but it didn’t work that great, it’s hard to use on long hair.

I wish I would have had one of these…in my size.

Now this would have kept the water away from my ear!! image from lulusoso.com

 

Recovery from the Endolymphatic surgery is still progressing, things are starting to itch!  So it must be healing, right?  and the little bit of hair they shaved is all prickly, it feels funny…and itches too.
I see my doc on Tuesday, so I’ll have a better update then.
Strangest thing, recently…past few days, I’ve been able to hear more.  I had a headache and decided to sleep early the other day, I kept hearing this sound..thought it was tinnitus, but it was so strange, so I put in my hearing aid to see, and found out I was hearing the TV, very low, but still I could hear it!  So I took my hearing aid out and got hubby to talked to me, I heard it!  Yes, very muffled, but I heard it with my left ear, the one they just operated on, the one with 0% word recognition the end of November.  Again, today, I took my hearing aid out of my right ear and could hear people talking, could understand…they were very close to me and have a good frequency for me…but I heard it!  I’m flabbergasted.  I know it could just be fluctuating again, but it’s strange.
The surgery on this ear has been so different from the surgery on the right ear.  With the Rt. ear…no vertigo, a lot of pain, ear would drain a fluid (not bloody) but a lot of fluid,  hearing dropped and never came back but stabilized so hearing aid helps a lot.  Left ear… much vertigo, not a lot of pain, ear is draining blood (not large amounts most of the time, but blood not that clear fluid), and hearing seems to be improving.

I’ve realized that when we go in for surgery and ask the doctor what to expect, he can’t know for sure.  Every person is different, and every surgery is different.  I had the same surgery by the same surgeon on both ears, and the recovery was as different as could be!  

I do hope they both have a high results rate!  I really want to stop spinning multiple times a week…ummm day!

Vertigo bad!  Standing, walking, washing hair…Good!

a great milestone today.  (must make note, have to remember how important each little accomplishment is.)

Do you ever feel like you have accepted everything, are doing well, being productive….ect.  Then have a dream of what you were like in your old life?  That happened to me last night.  I’ve been a bit melancholy all day.  Next Post…I’ll tell you about it.  Warning, it will be another T.M.I. post.  Sex will be included.)    

For now…

Here’s to clean hair!!

Update for Week 1 recovery! it turned out to be a better day!

On By WendyIn Chronic Illness7 Comments

Every day since I started having the constant vertigo, I have tried to slowly raise myself in bed to the point where the vertigo wouldn’t stop then I’d got back flat.

This evening, I slowing got myself on an incline, then scooted up some more…and more….and I was sitting, without the world spinning.

Not only that, I pushed it even further!

I couldn't help singing..."Put One Foot In Front of the Other...."

I went to the bathroom without falling, or spinning!!  I made it back to bed too!

I giggled the whole time!!!

I still have a lot of disequilibrium, and couldn’t move very fast, but the vertigo stayed away.  It might not have if I hadn’t taken it as slowly as I did…but it’s much better than yesterday!