Chonic Pain/Ilness Photography 2015 Project Week 2

The second week of the Chronic Pain/Illness Photography Project I have been participating in on Facebook has been amazing.  The people who are contributions and contributors are amazing.  This has become so much more than just sharing photographs, we are sharing our deepest fears, pains, joys, loves….our lives.  The support that has been given and felt is nothing like I expected from a Photography Project.  The project has been consuming.  When I’m not working on the theme for the day, I’m looking at contributions, reading stories, commenting, sharing….when I’m not actively working with the project I’m often thinking about the people, or a certain entry that has touched me.  This project will touch me forever.  I hope you enjoy my interpretation of this weeks prompts…..

Day 8 – Affirmations

affirmations

I try to live a mindful life. These quotes help me remember to live in the now, and remember that my body, just as it is right now, is just fine (I’m only human).

I also try to remember to be gentle with myself, I’m the only me I have. (I have a habit of beating myself up a bit, expecting more out of myself….my doctors, and my husband have often told me to give myself a break..I’m learning to.)

The photo on the left I took of my toes in the ocean, with a quote by James Baraz –
Mindfulness is simply
being aware of what is happening right now without wishing it were different.
Enjoying the pleasant without holding on when it changes. (which it will)
Being with the unpleasant without fearing it will always be this way. (which it won’t) – James Baraz

On the right, a photo my husband took, with a quote by Pema Chodron –
Realize that this very body,
with its aches and its pleasures….
is exactly what we need to be fully human,
fully awake, fully alive.

Day 9 – Support.
stuart and wendy on steps
The greatest Support I have is my husband. This photo is from our wedding. When we got married, 10 1/2 years ago, I was sick, but not nearly as sick as I have been in the last 5+ years.
He had no idea what he was getting into, but he has always been my greatest support. He is always by my side, always holding me, understanding when I am a complete bitch to him, helping me with the most humiliating task, watching me go through numerous painful medical tests and treatments….he is the only one bringing home any finances, and he also cooks, cleans, takes care of our pets and me.
I feel he has sacrificed so much to give me the best life possible.

He says I am his support, that I am what gets him through the day, I am his inspiration….He tells me he was a selfish person before me, that he strives to be a better person because of me, he tells me that nothing he does is a sacrifice because he’d rather be with me, than do anything without me.  How can this be?  How can he give me so much, and still think that I am an equal in this relationship?

Our relationship gets better and better. (we did go to therapy to help deal with me losing my independence and understanding how to deal with a chronic illness. The therapist I went to, and soon asked my husband to join the sessions, works a lot with people with chronic illnesses.)

Our relationship is really my biggest support. Together, we can do this.

Day 10 – Comfort
comfort collage
Comfort comes in all shapes and sizes for me.
When I first thought what I reach for first when I need comforting, I thought of my Monkey. I got him right before I first started getting really sick. He has seen me through a lot. He not only cuddles with me, but he makes a great neck pillow, a lumbar support…ect. I take him just about every where. Yep, this grown woman takes her stuffed animal to the hospital with her!
My painting of Buddha meditating represents my mindfulness practice, and meditation. Mindfulness practice has been a great comfort to me. I think it has helped me more than most medical treatments. I have also begun to study the Buddha’s teachings in the past few years and this has also been a great comfort to me.

The photo I took of the wild flower with the little bee on it is comforting to me because it reminds me to appreciate the little beautiful things I see, and not get so caught up in all the pain and suffering. It reminds me that life is constantly changing, just as the seasons change, my life is changing….I take comfort in that.

Day 11 – Who I Was:
wendy before
This was the hardest prompt for me to date. It brought up so many emotions. When I first read “Who I Was”, I thought, I’m still the ME I’ve always been, yes, I’m sick, but I’m ME….then I started looking at pictures…thank goodness I don’t have a lot of photos of the “before” pictures on my computer.  This brought up a lot of emotions.  Emotions I thought I’d dealt with a long time ago.  But grief isn’t linear, and right now, I’m grieving a bit for some of the old Wendy…..this just touches on some of the old me…A little of Who I Was….
top left: a selfie with (my then boy friend) now hubby – a little sexy thing. I miss feeling sexy, or being able to have sex without pain, or being able to have a normal sex life….no, to be honest, I really miss having a wild sex life! I finally met the love of my life, and not long afterward my sex life was ruined. I’m not that me any more.top right: I’m in the front on the left. This is a birthday party for one of our old friends. This was a normal occurrence before I was sick. I was social, I entertained. I went to museums and art shows and parties…… I had a lot of friends. I’m not that person any more.

bottom left: Me on the left with a friend at the NC State Fair. I was spontaneous, I could run, and jump, and play….I loved playing with kids. I was FUN. (sometimes I still am, but it’s hard..it sure isn’t spontaneous, and I pay for it afterward) I used to do these things without fear. I can’t do that any more. The now Wendy is full of fear.

bottom right: Me cooking…well baking…well, enjoying the products from baking…haha. I love to cook. I love everything about it. I have fructose malabsorption, I’m allergic to wheat, I’m hypoglycemic…..ect… These things, well yeah, I’m sick with it, but it didn’t matter much except when eating out, because I loved to cook!  It was just a challenge. I loved to play with ingredients and learn to make new flavors with the foods I can eat. I had a gluten free food blog with close to 2,000 followers. Suddenly my balance issues got too bad. I was having too many accidents in the kitchen. I can’t cook now. I really, really miss this….this is one thing I hope I can get back. I can’t drive either, but I’d rather be able to cook than to drive. And I live in an area where I can’t really get anywhere without being able to drive.

Day 12 – Motivation

life

LIFE – My little flower represents life….even when it isn’t supposed to be there.

Much of what I’ve already posted are motivators to me, however, I think the thing that motivates me the most is life. I want to live my life. It may not be the life I expected, but it’s still my life. I’ve learned to change those expectations…and simply live day to day.

I read something recently that stuck with me.
Sometimes the best way to motivate yourself is to stop trying to motivate yourself. (That really hit the nail on the head with me. Sometimes I have a hard time getting motivated, especially when I’m depressed. Sometimes I just have to act.)
You do not need motivation to act.
You do have to make a conscious decision to act.
The action could be big or small.
It may not turn out the way you want.
How you feel about that is irrelevant.
(OK…that part is really hard. for me this part means, being ok with how things are, no matter what happens.)
Actions move you forward.
Waiting for motivation keeps you stuck.
What you do with this information, you do in this moment.
The decision is always up to you.
(this came from a website called mindfulness over matter)

I also have to remember to always be gentle with myself and forgive myself if things don’t turn out as I planned. If I can’t get motivated or even act on something sometimes, it’s ok, forgive myself and move on. Give myself a break.

Day 13 – Challenges

callenges collage
Whew – To sit down and think of all the challenges I face each day, I couldn’t sum it all up here. It was difficult to pick what to share with our group.

In the center of my collage you will find a lot of spoons on the floor. If you are acquainted with the spoon theory you will probably understand this immediately. If not, I recommend you read it, you can find it here: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ I haven’t been the biggest fan of the spoon theory myself, because there are many days I have no “spoons” and I still do things, sometimes you just have to push through it or you don’t make it to that doctor’s appointment you made 3 months ago (yes, I’ve still had to cancel those way too many times). But for me this represents all the challenges I face on a day to day basis that take every bit of my energy, or that I have to get up all my courage to do (like take a bath or shower) that normal people have no problem with.

From there we will go from top left to right around to the bottom left.

Selfie of my incision after one of my ear surgeries. This represents the challenge that I’ve had many surgeries on my ears and they are still ruling my life. Between the vertigo and the lack of hearing, causing me to shy away from social interaction and have fear almost every moment of the day that I will be attacked by my own head and lose control of my body.

The next photo represents one time I had vertigo when in public and was stuck in a parking lot of over 4 hours, I was 1 mile from my home. I finally got my husband to get me home, I ended up having a violent attack for over 9 hours. I thew up most of this time and lost control of all bodily function. It is a huge challenge to get over my fear of having vertigo in public and just go out, and it is a huge challenge swallow my humility and allow my husband to take care of me and clean me up when I have soiled myself.

The last on the top row, another selfie, represents my challenge of living with Bipolar I disorder. I have been mostly stable for about 20 years, but it is still a challenge. I have to be very dilligent about taking my medication and taking care of myself. I have to really pay attention to my body and my mind. If I notice any symptoms returning I need to get in touch with my doctor immediately. There is always a chance the medication my stop working. Having Bipolar I is classic Manic Depression, and it is very challenging.

The middle row left is a do not disturb sign from a trip my husband and I took before we were married. This represents the challenges I have having sexual relations with my husband. If anyone wants to talk about this, I will be more than happy to. I know this is something that is very hard to talk about, but it is very important to break down that barrier. You are not alone.

On the middle left top is a self portrait of me painting. This is a big challenge now. I can paint, but I get confused. There are many days I simply can’t paint due to pain, but I also have a hard time with subject manner and style. I feel more empty inside about my art. I would like to put my illness on canvas to get it out, but I just can’t. I’ve done a couple of commission pieces, but I have to have no deadline. It’s simply a really big challenge. My doodles make me happy, at least I’m doing something.

Just below, you will see my arm with many hospital bracelets on me. This is actually from my last visit to the hospital. This represents the challenge of having to go to the hospital so much. To so many doctors. To owe so may hospital and doctor bills that only my husband can pay. To me it even represents fighting for disability.

On the lower left you will find my Headache Pain Scale. This represents the challenge I have always found in telling doctors how I feel. I don’t feel that doctors really understand patients a lot of the time. I’m lucky I have many good doctors. I’m also lucky that I have the kind of insurance that if I don’t have a good doctor I can fire them. (and I have) But finding a doctor who really understands is a challenge. (also not being able to hear makes it hard for a doctor to make himself understood to me….we definitely can have communication troubles.

The last photo on the bottom left represents the unknown. They have come to the point that they have told me that they don’t know what is wrong. We know I have a vestibular illness, probably more than one, but they don’t know what. I have been told for many years I have Meniere’s disease. I have been through more tests and treatments than you can believe, now I’ve been told, they can’t do any more. I’m stuck with the unknown. There are other conditions they don’t know about, the Avascular Necrosis in my hip, they don’t know if I will get it in other joints….good chance. Some doctors have said that other diseases I have may all go together, other doctors say no? I think my body may hate me. The photo is an x-ray of my hip on the left, and a photo of my ear on the right that I have manipulated beyond recognition.

These are some of the challenges I face. Sorry I couldn’t keep it shorter

Day 14 – My Body

my body

It’s cute….but very fragile.
(note, I could never get in this position, not now, but I used to love yoga, I could have…)

*this is a straw wrapper version of me, created one day when I was playing with the wrapper from my hubby’s drink.

As you can see the Chronic Pain/Illness Photography Project has become much more than sharing photographs.  Everyone in the project is sharing a part of their soul.  I feel so honored to be a part of this project.  One week to go…..

Chronic Illnesses, one comes up, another is put on hold….

I know, I haven’t posted in a while.  I feel like all I do is the same old thing, talk about me, and how I’m falling apart….or how I’m dealing with my life and not falling apart. Hopefully the later more than the former.

Well, here I am again, writing about things going on in my life….I was writing a friend a letter and thought, I really should put this in a post.  This is part of the reason I started a blog.  It isn’t just for other people, it is for me.  To get things out, and to keep up with things.  Sorry folks, I hope you don’t mind sometimes just coming along for the ride.
image courtesy of pixgood.com

image courtesy of pixgood.com

Of course one of the main reasons I started this blog  is to let people know they aren’t alone on this Chronic Illness journey.  If you are anything like me, if you have one Chronic Illness, you have more….and things are always coming up…..so this is what’s going on right now……I’m a little overwhelmed…again.  I’m trying hard to take it one moment at a time, then some times I’ll sit down and think about everything that is going on and just feel drained.  Whew!  Am I really stressed and just don’t know it?
I seem to always have something new come up and have to deal with it, then I have to put something else on hold.  You will understand as I continue.  I’m going to try to make this as short as possible.
I’ve had some bladder/urinary tract troubles.  I’ve been to a few doctors for this, they run a urine test and it comes back clear, my blood work comes back clear.  But I’m in severe pain.  They will call it, bladder spasms, irritable bladder, non-infection cystitis….but they all say, they think I have Interstitial cystitis.  I need to go to a urologist to be properly diagnosed and to get better medications to help with it, but there is no cure, and some people don’t react to the treatments.  I’m lucky I don’t have severe flare-ups very often.  However, I do have little flare-ups often.  This has been a VERY SEVERE flare.  I went to the doctor on Monday, February 2nd.  Of course, everything was clear, but I felt I needed to go to make sure I didn’t have an infection.  She did give me an anti-spasmotic and they helped get me through the rest of the flare.
This sweet doctor was scratching her head with me, she said, “You have a lot going on for such a young lady.”  She kept saying, she couldn’t help but wonder if there wasn’t one thing that caused many of my issues.  Some umbrella condition.  You know I’ve never had a doctor say that to me before.  I’ve had Stuart say it, and friends say it, people on my blog say it, but doctors, not so much.  I couple of doctors have thought my migraines and Meniere’s may have a commonality but then they kind of ruled that out…maybe….kind of.  I think I might just talk to her again.  (she works with my new PCP)

On the way home from this doctor’s appointment I had a vertigo attack start.  Got home and it was BAD.  I’ll leave it at that.  You all know how what a BAD vertigo attack is like.  I didn’t keep up with how long it lasted.  I know my appointment was at 12:30pm and she was on time, and I was finally able to fall asleep WAY after dark.  I woke up sick again and it was about 11pm.  I was so nauseous for 2 days.  I’m not normally like that.  Usually after an attack the nausea leaves me after a few hours.  The anti-nausea meds work pretty well.  This time, I was really sick for days.  Ick.

On that Monday I was supposed to have my intake evaluation to start my physical therapy for my hip.  This had to be rescheduled.  They didn’t have anyone who could do this for TWO weeks.  1st thing that was put off because of something else going on with me.

The next day I had an appointment with a new neurologist at the Headache Clinic.  I had to reschedule because I was simply too exhausted to even move my head, and too nauseous.  I was afraid if I pushed it I would have vertigo again.  Now my appointment is in March. *sigh*  2st thing that was put off because of something else going on with me.

I went to see a new Pulmonologist on January 30th.  My breathing test came out good.  I do not have COPD.  That’s good to know.  So why am I coughing up phlegm every day?  EVERY DAY since October of 2012?  Yes my breathing is better, but this coughing up stuff is gross.  I get awful looks.  People seem to think I have some horrible disease.  I’m on 3 medications for Asthma that I take every day, and I have an inhaler, that I use often, and nebulizer.  And my new doctor said, “I don’t know if you have Asthma.”  What?  He said he needs to see my old records.  He also said that you can be clinically diagnosed as having asthma but they actually have to do a test to really diagnose you, and they often don’t do this test.  A lot of people don’t want to do this test, they’d rather just be treated for the symptoms.  Usually the symptoms present themselves so clearly that they are sure enough that they clinically diagnose it.  That is what the doctors did with me.  However, I was not presenting with the symptoms when he saw me.  So he needs to see my records.
There is a possibility that my acid reflux may have something to do with this cough.  So I need to have a barium swallow on Friday, February 6th .  Oh wait….I was still too wiped out from the vertigo attack and in too much pain from the flare-up to be able to do this, so I had to reschedule to February 20th.  3rd thing that had to be put off because of something else that is going on with me.
I did finally get an appointment set up for the CT scan for my hip.  It is set up for this Friday, February 13th.  I will know soon if my hip does in fact have avascular necrosis.  If it doesn’t I do hope this CT scan shows what the problem is, with all the pain I am in, I will be very disheartened if the doctor tells me he can’t find anything.   (not that I’m looking forward to, or wanting, a hip replacement)
Trying hard not to think about what may be, just living in the now, and waiting for what will come.  After all, none of my worrying about it will change anything.

Want to hear something really funny.  After all of the things I’ve been through.  All the crazy tests, all the things I’ve been told to give up….different foods and such (for example, I eat mostly whole foods, no refined sugar or gluten. I only drink water.  I can’t eat onions, garlic, apples, pears….all kinds of foods…it’s challenging sometimes.  But I have to use these food restriction of I get sick.)   I have been told in the past to restrict my intake of chocolate because of migraines.  Well, I found I could still have a square of dark chocolate now and then and it didn’t bother me.  I just didn’t over do it and I was fine.  Really, I could eat more and I didn’t have problems with my head, my tummy or bladder might not like it because of the caffeine, but my head was OK.  But if I limited it to my little square I was good, all the way around.  And I was a happy girl.  I could still have chocolate.

Dark Chocolate image from medicalnewstoday.com

Dark Chocolate
image from medicalnewstoday.com

Then it happened.  I had my square and immediately I got the worst migraine.  Oh no!  and my bladder started to scream!  What?  No!!!!
I waited a week.  I tried it again.  It happened again!  NOOOOOO!  Not chocolate!!!!
I literally cried!
I’ve given up so much.
my beloved apples.
dried fruit.
asparagus
onions and garlic
NOT CHOCOLATE!!!!
The moral of the story is….you can take away everything else from this woman, but chocolate is her breaking point!

 

Feeling Better – Part 2 (Diet)

"The Perfect Diet" by Fatal Potato deviantARt.com

“The Perfect Diet” by Fatal Potato deviantARt.com

I’ve started this post at least 4 times….how to explain my diet and why it has changed without telling you my whole history with food and health.

Let’s try to put it in a as few words as possible.  Years ago I had a lot of pain and health issues including Gastrointestinal (GI) issues that no one could really explain.  They gave me lots of labels and none really fit.  Eventually I found out I was “slightly” allergic to wheat, so I quit eating it.  I felt better.  I decided to stop eating gluten all together.  For many reasons.  That’s not what this post is about though…so to make this shorter I’ll leave that there.

I also have migraines, gastritis and irritable bladder…all of these require me to be picky about certain things I eat.  For instance, I can’t have caffeine, red wine, I have to be careful about chemicals in foods, acidic and spicy foods….all kinds of things.  Even my beloved dark chocolate can cause me trouble.  (I am allowed small amounts.  So I savor it.)

What else do you ask?  I have Meniere’s disease as you all know.  With that comes a low salt diet.  I also have Irritable Bowel Syndrome.  And last but certainly not least, I have Fructose Malabsorption. I was going to try to explain this here, but again….trying to make it as short as possible, so I found that Wikipedia really did a good job explaining this, so just click on the word and it will take you there and you can read all about it.  After being diagnosed with Fructose Malabsorption I had to really change my diet, it was hard.  I was put on a diet called low FODMAPs.

blog.katescarlata.com

blog.katescarlata.com

I love the description of FODMAPs Kate Scarlata gives on her blog.  Check it out.  FODMAPs Basics.

Here is the list of foods I was given, what I could eat, what I couldn’t eat, how much of this and that…..I never got this right and found out some of it I still couldn’t eat.

FODMAPs Checklist

So why did I still need to change?  As I said…I couldn’t get it right!  I’ve been following Kate Scarlata’s blog for a long time.  She is a Registered Dietitian and a huge advocate and authority on the low FODMAP diet.  She knows her stuff.  So when she worked on a book, a diet book no less, that was based on low FODMAPs I was intrigued.  I wondered, why a diet book.  But I looked at it and found, this will help me.  This book could help a lot of people.

Kate says, “21 Day Tummy is a plan designed for the person with digestive symptoms that also needs to lose weight BUT if you want to just enjoy the amazing recipes and learn more about gut bacteria, inflammation, belly fat and how that all connects to your health…I think it’s a great read with excellent science for just about everyone!and I agree.

This book starts off with a very scaled down version of the low FODMAP diet.  It has now grains in the first 5 days.  It does have potatoes.  You have a Belly Blaster Smoothie for Breakfast every day for a while.  I thought this would be torture for me, I have always been a big breakfast person, but even after I was able to start eating other things for breakfast I have stuck with my smoothies.  If I eat a “real” breakfast, I normally have a smoothie for lunch.  I really like them.  They are good, and like a meal in a glass.  I have one and I’m not hungry for hours!  I do mean HOURS!  It’s funny, I turned to Stuart the other night and said, “How come I can have a smoothie for breakfast and not be hungry for hours and have a full dinner and be hungry in less than 2 hours?”  He said, “Me too!”  Funny huh?

So I have used this diet as an elimination diet.  It has fewer foods than the low FODMAPs main list to start.  It has great recipes!  Everyone knows how tight we have been on money, so I checked this book out of the library 3 times!  Then I got a $50 Amazon gift card for my birthday and finally bought it.  I also bought the cookbook.  We’ve been cooking exclusively out of these books since the beginning of June.  However, we have eaten out a few times.  Try moving like we have and not eat out a few times.  But I have stayed pretty true to the diet.

How has it worked?  Wow!  I have more energy than I have in so very, very long.  My tummy is flatter than I’ve seen it in years.  I lost 5 inches in my stomach the first week.  When I eat something that doesn’t agree with me I can bloat so much that I will suddenly gain 6-10 inches in my waist, I have measured it.  It is so painful!  This has stopped.  I accidentally got something the other night and was shocked.

I’ve lost 26 lbs since the beginning of June, most of that in June.  When I started the diet it started coming off very fast, I’m glad it slowed down, I was getting saggy skin.  My body couldn’t keep up with the rapid weight loss.  It is still coming off, slow and steady.  However, I have lost my “food baby”.  Yes that’s what we used to call my tummy.  Almost every time I ate, I would suddenly look pregnant.  I don’t look that way any more.  I still have weight to lose, but my digestion is so much better, and I just feel better.

I had a physical in June, just a few weeks after starting this diet.  My triglycerides where in range!  They were lower than they have been in 20 years!  Yes 20 years!  I have weighed much less and been much more physically fit in those years.  My doctor was thrilled.  My bad cholesterol was a tiny bit high, but just a very tiny bit.  Every thing looked really, really good.

Is my diet the catalyst to making me feel sooooo much better.  Where my gut is concerned, YES.  Has it helped my fatigue, I would say Yes!  Does it make me feel good, Yes.  When your stomach doesn’t hurt and you aren’t worried about passing gas or running to the bathroom, or if your pants are going to fit after you eat…you feel better.  Plus, I’m in smaller clothes.  How cool is that?  But really, that’s just the icing on the cake.  My tummy doesn’t hurt any more.  I am having regular poos.  I know that what I’m going to eat isn’t going to hurt me.  And I love my smoothies. haha  Getting some of my figure back is nice, and yes, it is giving me some sexy confidence back.  So that is pretty darn special.

Is it helping my headaches?  Maybe.  Is it helping my dizziness?  Maybe.  There are too many other factors going on at the same time to be able to tell, if the diet has helped  This is not a diet for Meniere’s or Migraines, but I think everything is interconnected, so I’m sure everything I do affects all of me.

I know you are all wondering….what exactly are you eating?

are you really wondering that?   I could give you a list of the foods, but without the book to explain things to you, and tell you why certain foods are good for your tummy and why other foods are bad for your tummy….I don’t think it would help that much.  I know having the list of foods given to me didn’t help me much at all.  But the book really helped.  Remember, I just checked it out of the library….3 times….before I bought it.  If you, or someone you love, have any tummy troubles, I think it’s worth checking out.

The low FODMAP diet is the diet for people with Fructose Malabsorption, no doubt about it.  However, it is also becoming the main diet to treat those with IBS.  They are finding that it is also helping those with many other intestinal disorders: IBD…Crohn’s, Colitis….ect.  Oh…many people were also raving about having their acid reflux go away.  Unfortunately mine didn’t, but as I said, I have gastritis.  I need to have another endoscope, that part of my tummy issues didn’t go away.  Drat.

The low FODMAP diet is ideally supposed to be followed for 2-6 weeks under the guidance of a registered dietitian or nutitionist, and at that time they will advise you how to introduce foods back into your diet to recognize your personal triggers.  This is often hard because there are so few dietitians or nutritionist who are well versed in the low FODMAP diet.  Luckily, this is changing as the diet is becoming more understood and well known in this country.  The 21-Day Tummy book does have guidelines in the back to help you reintroduce foods to see what may be your personal triggers.

I haven’t been willing to try to add new foods into my diet yet due to all the stress of moving, I will start adding in new foods soon and will hopefully finalize my diet in the near future.

So now you know a little bit more about my diet.  If you have questions, feel free to ask.

Next part 3 in the Feeling Better series….Mindfulness Based Stress Reduction.

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

 

Freedom by w.holcombe

Freedom
by w.holcombe

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

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

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

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

by w. holcombe

by w. holcombe

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

 

Gratitudes 3 – A Pretty Darn Good Week!

by w. holcombe

by w. holcombe

Things haven’t been perfect this week.  I did have a night filled with cluster headaches.  But I got through it, and since then I’ve been feeling, well, pretty darn good.  Until I got this little virus, but I already wrote about that, and I’m grateful that it will run it’s course and I’ll be done with it!  Plus I’m very Grateful that it really hasn’t been that bad, a couple of icky days, but that’s about it.

I am so very GRATEFUL that I found something that is helping me with my tummy issues!  I found a book that addresses the food issues that I have, but I plan to write a whole post about this, it’s so exciting! And I think it could help others with dietary issues.

I am GRATEFUL:

  • that I have a new psychiatrist!  She is so professional.  I’ve only seen her once, but she took a very detailed patient history, discussed all my medications in detail, discussed my concerns, and our future plans.  I was very impressed.  After the last fiasco with my previous doctor, it is such a relief to find a doctor who is not only professional but enjoys her job.
  • that I have been on more regular sleep schedule.  This is something I haven’t had for a very long time.
  • I am waking up with more energy.  Of course, this is probably because I am on a more regular sleep schedule, but it sure is nice.
  • I’ve been able to go down stairs every day this week. Most people probably don’t know just how disabled I have been, but tackling the stairs have been a huge task for a long time.  Most weeks I’ve been lucky if I’ve made it downstairs one or two days.  So making it down stairs every day for a week, that is a great accomplishment!
  • I have gotten out of the house many times this week!  Not only have I made it downstairs every day, but many days I’ve gone out.  I went to the grocery store….a HUGE accomplishment!  I went for a ride with the top off of the car!  I went to the Thrift store and got a new pair of pants.  I went and looked at glasses.  (I have an eye doctor’s appointment tomorrow, and will need new glasses.)  I even went out to eat, this is hard because of all the noise.  I’m also proud I went out to eat and stayed true to my diet, I didn’t eat anything that would make my tummy unhappy.
  • yoga pose 1yoga pose 2I exercised a little this week….a very, very little…but I did something!  Not only did I do a lot more in general, and you can call that a lot more exercise…I know my body is!  I did a few yoga poses almost every morning.  Just a few.  I’m trying to learn to balance more with my eyes instead of relying on my ears so much.  So I’m doing some of the standing yoga poses while focusing on a focal point.  Maybe it will help.   By going out an doing more I’m also working on increasing my stamina.
  • I didn’t let a virus ruin my week.  I was having a really great week, then I caught a virus and suddenly I felt crappy.  I thought, am I going to start feeling really bad again?  Then I caught myself….Stop thinking like that.  I can’t predict the future.  And what has been happening has been great, but it doesn’t mean it will continue.  I  will live in this moment.  and I’ll enjoy it.  If it’s a bad moment, I know it’s a moment.  It’s my moment.  And it’s OK.  (A note to Laurie at HibernationNow….Yes, I did over do it…You were right!  so I’m very tired today…but it was worth it, yesterday I had a a very fun day!)
  • I realized that even having a virus I still don’t feel as bad as I have felt.  No I don’t want to live in the past, but it was a bit of an eye opener when I realized I was lying here sick and I didn’t feel as bad as I have for a lot of the time this past year….heck the past couple of years.
  • My head hasn’t hurt much at all!  As I mentioned above, I had a night of cluster headaches, but since then….my head has been so good to me.  There’s a couple of reasons I think this may be, but I’m just grateful that it has happened!  I’m sure I’ll have headaches in the future, but to have the relief I feel now….so GRATEFUL.
  • I made my lunch today all by myself.  I cut up my own chicken today, and warmed up my own lunch.  Because of my balance issues and sudden vertigo I haven’t trusted myself to use a knife in a long time, at least without supervision.  Today I made my lunch with Stuart upstairs.
  • To hear my husband say, “It’s so nice to be able to do things with you.”   Remembering to be in this moment…..

When the Chronically Ill get Sick

feeling sick, by w. holcombe

feeling sick, by w. holcombe

At the end of a GREAT week I’m sick.

Ugh, I have a virus.  Hubby’s had it all week.  He’s been very tired all week, running to the bathroom often, and just not feeling well.  It hasn’t been enough to stop him from doing what he’s needed to do, but I think he would have rather napped a lot.

Last night, it started to hit me.  I thought I’d just had a banana that wasn’t ripe enough.  Umm, Let me explain, I have fructose malabsorption, bananas that aren’t ripe have more fructose than those that are ripe.  By ripe, I mean with a LOT of spots, most Americans do not eat bananas that are really ripe.  So I need to eat really ripe bananas, the banana I ate last night only had a couple of spots, when I had the first bite I thought, ummm, not quite ripe enough, but I ate it any way.  My tummy bloated, more than it normally would just from a little banana, and it stayed bloated all night.  In a couple of hours I started getting really hot, REALLY HOT.  I got up and ran cold water over my hands and splashed it on my face. Suddenly I felt like I was going to pass out, Stuart had to help me back to bed.  I quickly went to sleep.

This morning I woke to the feeling of having to go to the bathroom.  Not a normal thing, but didn’t think much of it.  I was happy I didn’t have a headache…again!  That’s 4 days in a row now!!  However, I noticed that I was still bloated.  Not a good thing….wasn’t happy about that, but didn’t think much of it.  Was just sad  because I’ve been on an elimination diet and I’ve lost 3 1/2 inches from my tummy in the past 5 days, but I thought, this was just temporary.  Perhaps I was reacting more to the banana because I had been avoiding all foods that I had been reacting to?  I got dressed, even did a tiny bit of exercise…..just a few yoga poses, I’m trying to work on my balance a little since I’ve been feeling better.  But I got a little light-headed, and laid down for a bit.  Got my head together and went downstairs.  Had my morning smoothie and played with the cat.

Suddenly I had to RUN to the bathroom.  My stomach HURTS.  I feel weak, tired, and overall just yucky.  Now I have a headache too.  I won’t be able to do things.  I will be on the couch for the day.  Hubby didn’t feel good for about a week, I hope I don’t feel like this for a week.

So Hubby’s little virus is hitting me hard.

I have found that this is often what happens when someone who is already chronically ill gets a little virus.  We don’t have the little symptoms of a normally well person, our symptoms are much more profound.  At least I’ve found that to be my personal case, and I’ve heard it from others….how about you?  Do you find that a little virus, even a “little” cold hits you harder than the average person?

Now I think I’ll take a nap.

“Ow! Ow! Ow!”

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”.  Imagine my surprise when I realized the words were coming out of my own mouth.  Suddenly I realized just how much pain I was in.  My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort.  As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth.   (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some.  The pain in my bladder and stomach were a different story.  My stomach literally felt like it was being eaten from the inside out.  Over production of acid is not a pleasant feeling.  I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work.  I’ve never had it so bad before, I could not touch my stomach without it causing more pain.  I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack.  I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now.  I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming.  So when this pain started I thought it may be the same.  Unfortunately, this pain kept getting worse and worse.  Every time I moved it hurt.  Sitting was very painful, so was walking.  I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful.  All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before.  I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out.  By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong.  So off to see the doctor again.  Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.)  I saw another doctor in the office.  Not someone I really want to see again  I felt like he talked down to me, as if I was not able to understand things.  Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either).  I told the doctor I have profound hearing loss and could not hear him.  He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough.  I had to rely on Stuart to tell me what was going on.  He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently.  He said, that’s not a fever, everyone fluctuates. (Then why ask me??)  I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid.  I never said they did, I am just overwhelmed that I’ve been sick so much recently.  I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that.   I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication.  Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much.  That’s ok, I talk too much when I’m nervous anyway.  He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much.  He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it.  He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him.  Yeah, that’s not going to happen if I can help it.  I’m feeling better.  Not well, but better.

On another note….I’m so very proud of myself today!!  I took a bath by myself!  I even washed my hair!  I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time.  I’m thinking over a year.  Don’t worry I wasn’t being irresponsible.  Stuart was in the house and on alert for my call.  He also just couldn’t stay away the whole time and came in to check on me.  But I did fine.  A little wobbly, but that often happens with temperature  changes (cool room, hot water).  Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it.  Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down.   Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer.  I think I’ll end this post here  If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)