Tag: Disability

Attack Time

On By WendyIn Chronic Illness, CSF, Medical Tests, Meniere's Disease, Pain15 Comments

On Saturday I woke up with my ears feeling very full.  (they normally feel like I have wet cotton in them, but this was worse.)

I noticed I kept having to ask my husband to repeat himself.  (even more often than usual)

These should have warned me, but I didn’t listen.  For the past few months, it hasn’t been unusual for me to have these “warning signs” with out the full fledged attack that follows.

But I was feeling pretty good!  We decided we’d make a trip to the grocery store.  I got dressed, and was sitting on the couch while we finalized our shopping list…and the world moved.  I got some Valium and Phenergan in me, but decided a trip out wasn’t the best idea.

Things settled down, and I settled in for a day of drawing and relaxing.  (forced relaxation, but relaxation all the same)  Stuart decided he’d mow the lawn.  (perhaps I should say, our mini-jungle….it’s been a while since it was mowed, and it’s rained a lot.)  He put his cell phone in his pocket on vibrate so he could feel it if I should call and need him.   I was drawing…relaxing…then I moved…I can’t remember what I was going to do, perhaps go to the bathroom, do something for the dog, get a drink?  I have no idea…but I started to feel bad…really bad.

I called Stuart’s phone…nothing.  I called again…nada.  I knew there was some medication on the bar in the kitchen, if I could just get there.  I grabbed my walker and started on my journey…of just about 8 feet around the couch and to the bar.  I didn’t make it.  But I made it to the window and Stuart saw me.  He walked in the door, and I hit the floor.  He got me some medication, but it was too late. (who knows it may not have worked this time anyway.)  I didn’t feel that bad, really.  I felt like I was having a mini-attack, but would be fine.  Until I started to get off the floor.  I couldn’t do it.  I tried to crawl to the couch.  That wasn’t happening either.  So I lay there behind the couch clutching the carpet…and I panicked.  I tried to stay calm, but the world was going crazy, and I couldn’t get off the floor.  Then the vomiting started….and a headache from hell!  Stuart said, “I’m calling an ambulance.”  I said “NO!”  (oh please, not again, a trip to the ER where they can’t do much…or don’t do much…just not again.)  Stuart was concerned my CSF pressure was dropping too low.  I told him to call Dr. Gray.

Luckily, the pain and the attack didn’t last very long.  (less than 2 hours I think)  I dozed off for a couple of hours.  When I woke up I was so tired, wanted to brush my teeth, and felt like I smelled like vomit.  We cleaned me up and put me to bed.  That’s when the terror set in.

I was absolutely petrified to go to sleep.  I didn’t feel quite right, and I didn’t want to wake up having an attack.  But it was more than that, I don’t understand it really, but I was scared.   I was also very afraid of being alone.  If Stuart moved, I panicked.  Was he leaving?  Were was he?  I was terrified, and it wasn’t rational.

Since then, my headaches have fluctuated between moderate to severe.  The day after an attack, I always have digestive issues.  I end up in the bathroom a lot.  Every time I had to go, my head would explode.

Stuart and Dr. Gray emailed back and forth, and talked on the phone.  She said to give it a few more days, but she thinks I may be a rare case.  Someone who really has high pressure, but has “blow outs” and by the time she sees them their pressure has dropped because of this.  She treats them for the low pressure, only causing more “blow outs”.  (Please note that I’m getting all of this second hand from Stuart, so I can’t explain it very well.)

I have a question for my fellow Meniere’s sufferers.  When I end up throwing up because of an attack it’s much worse than when I’ve thrown up because of other things.  (like the flu, food poisoning…or having a bit too much to drink..)  It’s violent.  I gag so much, I can’t breathe, it’s so scary.  My stomach hurts so much, and I constantly feel like I have to go to the bathroom too.  This time I had such violent spasms that my jaw popped.  It was so painful, my mouth was trying to open further than it should.

So my question is:  Does anyone else feel that when you get to the throw up stage during an attack that it’s worse than other times you’ve had to throw up?

I swear it’s so horrible I would do anything to stop it.  All I want to do is die during these attacks….just make it stop.

Why can’t they fix us?  Why can’t they at least figure out how to control the symptoms?  I know my doctors are working on it…but I’m having a hard time just watching life pass me by while I wait for someone to help me.

Don’t get me wrong.  I’m very grateful that I had nearly 5 months of being virtually symptom free.  This is the first severe attack I’ve had since January!  I’m very happy about that, and it does give me hope.

I am also so very grateful that I have the support of my husband.  I have such respect for those of you who have to endure this without help.  I had Meniere’s before I met Stuart, but it’s gotten much worse in the past few years.  I have been through attacks alone.  It was terrifying…and at the time I didn’t know what it was.

Stuart really helped during this attack simply by talking to me the whole time.  Telling me how much he loves me.  Repeating soothing words over and over.  I honestly think this attack would have lasted longer if he hadn’t been there to help calm me down…and take care of me.

 

Recovery is a bit rough this time. (this is my 150th post. You guys are awesome!)

On By WendyIn Chronic Illness, CSF, Disability, Meniere's Disease, Pain10 Comments

After all the warnings from previous procedures that my pressure could spike afterward…and it didn’t…well, I thought it just wasn’t going to happen to me.

Ummm. WRONG!

My  pressure spiked, and my head has been killing me.  I’m taking Diamox to lower my pressure, and that scared the bejebez out of me.  (No, I have no idea how to spell Bejebez but if you use phonics, it sounds right…doesn’t it?)   Any way, I’m petrified that I’ll get my pressure too low, and start spinning and all of that mess.

I’m having the weirdest tinnitus in my left ear.  Sounds like a rail road train, (sometimes), other times, it sounds like a very loud squeaky swing….and just all kids of things…but that’s not the weird part.  It changes if I put my hand near my ear.  If I touch around my ear, it gets louder!  And if I hic-up (which I seem to do very often), it has a very loud DING-DONG.   Driving me insane.

Think I may have taken too much Diamox yesterday (Dr. Gray was pretty vague on how much to take, take it until the headache stops.  Up to 1500mg at one time…notice not in one day…but at one time.)  Feeling kind of lost there, but since I couldn’t actually talk to her, well, Stuart doesn’t think to ask some things.  But yesterday, the world was spinning, I was amazed I wasn’t throwing up.  The world was really moving!!

My usual spot for the past week. Lots of love surrounding me.

I’ve spent the last 6 days in bed.  Well,, I tried to get up to the couch a couple of times…so I was probably up for about 3 hours total.

I feel so helpless.  Stuart usually has to help me get to the bathroom…even pull my pants down…how humiliating!  And then the most humiliating thing…and I really thought I was better about this…is when he has to give me a suppository.  I just feel so …. dependent…helpless…and just icky.  When your husband sees you naked, it shouldn’t be to put medication up your butt! Or help you go to the bathroom!  Yuck.

I feel like I have some terminal illness, and I’m just waiting to die.  It reminds me so much about taking care of my mother when she was so sick.  I know she never planned for her daughter to have to do private things for her.

And to top it all off, my hearing aid BROKE!  For the second time!

You may remember this picture below when I was showing off my new hearing aids:

The one on the left, is the one that keeps breaking.

For the second time now, I was cleaning my hearing aid, just rubbing it gently with a tissue, and the little part that holds it in your hear, has snapped off.  I’d only had the second hearing aid for about a week.  I’m so ticked!  I’m asking them to make me a new one out of the same stuff the right one is made from.  It is a much sturdier material.  The clear plastic, just cracks, like old dried up plastic does.  It’s so strange.  I’m getting a hearing test on Sept. 6th, and they will order the new hearing aid then.  (I think they have to make a new mold for this type of insert.)

I think that’s all for today.

I did want to mention, If you liked seeing and hearing about how my art has been helping me through all of this, I started a new blog that just talks about that.  It’s called Create To Heal .  Come see me, let me know what you think.  Join me in my journey.  Create Art.  Have Fun. Feel Better!

So, What am I mad about now?

On By WendyIn Chronic Illness, Life, Meniere's Disease, stress7 Comments
I Don't Like Me When I'm Angry!

I mentioned in my last post that I’m dealing with some anger issues.
I’m not talking about getting a bit upset here and there, I’m talking about some deep seeded resentment.  Something down in my gut that is just eating away at me.  Perhaps that is a bit strong…but I wanted to make a point.

I’ve been snippy, grouchy, teary, snappy….  Oh, let’s just say it, I’ve been a bitch lately.

Not all the time, at times, I’m a perfectly likable me.  Positive, light hearted, smiling, laughing…  Then unexpectedly, something will hit me in just the wrong way, something that normally wouldn’t mean anything, and I want to explode.

Finally, I tried to take a step back from the situation.  And ask myself, what are you REALLY mad at.  I’ve come up with a few things, some I bet you have felt at times, others may just be me.  I don’t like being like this.  I try very hard to keep a positive attitude, to believe things will work out, to understand that even if they don’t, I will survive.  No, not just survive, I will thrive!

It has been hard lately.  Spending almost every minute lying down.  Having horrific headaches, hearing things that aren’t there….well you all know what I’ve been going through.

And that my friends is what, I believe, I’m mad about!

I don’t want to sound petty, or ungrateful, or as if I don’t have hope.  This is just anger.  It may not be totally justified, and it’s not fair that I keep snapping at my husband, but it’s there, and I felt like I should discuss it.  (perhaps giving it a voice will help it to go away.)

I’m MAD…

  • that I’m not cured.  I know I kept saying that I understood that this was not a “cure”, that I know I still have Meniere’s Disease, and that I could handle it if my symptoms returned.  That this procedure gave me hope, and I would cherish every moment I had as a “normal” person.  (I’m not saying that those feelings have changed.  I still feel that way….but I’m still angry that it’s happening…and I don’t like myself very much for saying that.)
  • that I thought this was over.  I don’t feel that I was being as realistic as I should have been.  I’m not sure I was being honest with myself.  I knew the possibilities it could happen again, and I would need more treatment…but I don’t think it really sank in.  I put those thoughts aside and thought about the future…for the first time in a long time.
  • that I don’t feel I can plan for the future any more.
  • that I’m scared.
  • that I can’t do things I need and want to do.
  • that my house needs to be cleaned.
  • that Stuart has to do everything, and I keep getting angry with him when things aren’t done.  Or done the way I would do it.  How can I get angry at him for this?  Or am I really just angry because I can’t do it?
  • at my friends, who haven’t gotten in touch, who haven’t offered to help…the most I get from most is a quick note on facebook.  I know this has been going on for a long time, I know that my friends have lives and responsibilities.  I don’t blame them.  But I’m still hurt, and angry.  I don’t want them to feel bad.  I don’t know what I want, or expect.  I have 2 local friends who really keep in touch with me.  1 emails me often, 1 often chats with me on line.  (and I know he would be over to see me more often if he wasn’t having troubles of his own right now.)
  • at my family.  Who have never offered to help in any way.  (I must put in here, that I didn’t expect it.)
  • when I read about others who have so much more help.  Who have friends who bring them dinner, or family to come stay with them for a while, or someone to just sit with them.  (again, don’t get me wrong, I am so very grateful for what I do have…especially my husband)  But I am hurt, and disappointed that I don’t have more people who reach out.  And I’m mad at myself for being jealous of those who do.

Oh, I’m certain I could go on and on, but I’m sure you understand by now.

This anger isn’t deserved.  It’s not even real in some instances.  I think it’s mostly about the situation.  I don’t want to be in this situation, and it makes me mad.  I don’t want my husband to be in this situation, and it makes me mad.  I don’t want to have my life on hold, and it makes me mad.

I’m trying to write this objectively, and honestly…but I’m not sure those two things go together right now.

When I got so much better after my patches in January, I started to see my friends at gatherings and things.  At first it was very hard.  I was angry at them.  It’s hard to explain.  These people mean a lot to me, but I felt like they forgot me when I wasn’t able to do much. Most didn’t ask Stuart if he needed anything.  Even when I would reach out and say exactly what I needed, I usually didn’t get it.  (I’m not talking about big things here, I wanted contact, emails…anything)  As I said before, I understand that people are busy, they have lives, and it’s hard to deal with a friend who has been having health problems for a long time, it’s not like it’s something that just goes away after a visit to the hospital, or one time bringing a caserole…this illness lasts…well, a life time.  Finally, I was beginning to feel better about things.  We would go to parties and I felt that I could mingle, and talk with people, and not feel that under current of anger.  I don’t want to feel like that again.

I am overwhelmed by everything that is happening to me.  In just the past 2 years my hearing has gone from some hearing loss in my right ear, to severe hearing loss in both ears.  I just got hearing aids in March, and I can barely hear out of them now.  When I don’t have my hearing aids in I can barely hear myself talk.  I realized I was screaming at Stuart the other night because my throat started to hurt.
But at times, for short periods of time, I can hear better.  So I don’t know what to do about the hearing aids if my hearing is fluctuating so much again.  (I’ll see Dr. Kaylie next month, I’ll ask him then.)  Of course, I’m hoping that after seeing Dr. Gray I will have some answers and my hearing will improve again.

This hearing thing makes me so mad!  Partially because of losing my hearing…but not really…I think I’m handling that pretty well.  But because having my hearing drop has always been a sign of a Meniere’s Vertigo Attack coming on.  So now, I’m constantly on alert.  I’m so jumpy, and jittery.  Every time I move my head and get a bit off balance, I’m convinced I’ll be spinning soon.  Or, I start to get used to it, and start to ignore it, like I did the other day…and I was almost hit with a full blown attack.  (yesterday, was more of the same.  Lot’s of mini-spins.)

I am trying very hard to deal with this anger.
Dang-it!  I’ve had some crappy stuff happen lately, and I’m pissed!

I’m also trying to come to terms with it.  To feel some of it and not bury it.  Just writing this helps.  Now I hope I can deal with it, and move beyond.

But, I’m also very grateful that if this was going to happen, it did it now.  Before we brought a child in to our lives.  I’m grateful, that I have good doctors who really care, and will do all they can to help me.  (I just wish I could have gotten in to see them faster. – and yeah, I’m pissed about that too!)  I’m more than grateful for my loving husband, and all that he does.  I just wish I could help him more, or get him some help.

I also want you to know…ALL OF YOU…how very much you mean to me.  How much your encouragement, and caring words have helped me through many a rotten day.
**I saw a post on Fly With Hope today, and I thought, “Yes!, that’s what I wanted to say!”  http://flywithhope.blogspot.com/2011/08/less-bitter-more-thankful.html  Thank’s Kelly, I needed to hear this.  I’m feeling more thankful already.  I promise I will not let this anger fester and become unrelenting  bitterness.

The Challenges of Summer.

On By WendyIn Disability, Fructose Malabsorption, Gluten-Free, Meniere's Disease4 Comments
Phineas and Ferb courtesy of The Disney Channel

As Phineas and Ferb say:

There’s 104 days of summer vacation
And school comes along just to end it
So the annual problem for our generation
Is finding a good way to spend it…

Yes, it has been a long time since I’ve been in school and had a “summer vacation”, but I have always loved summer.  For as long as I can remember I’ve always felt better in the summer.  I hurt less, and I just want to get out and do more.  Longer Days and Warmer Nights…life is good.

The challenges of Summer?

  1. I over do it because I feel better, then I pay for it!
  2. I get over heated easily and don’t realize it because I love hot weather.  (although we lived in Palm Springs, CA for a while…it was too hot there!)
  3. I over extend myself.  I have a hard time saying “No”, I seem to think I can do anything during this time of year.
  4. I often end up eating things I shouldn’t, and get sick.  (I just don’t plan well.)
  5. Again, I get too hot before I realize it!
How I can over come these challenges?
  1. Well, this should be easy, just do less!  However, it’s often hard to tell when I might be over doing it.  I guess my best option here is to pay more attention to what my body is telling me.  And REST OFTEN.
  2. Limit the amount time I spend in the heat.  Don’t just trust that I can tell when I get too hot, or thirsty.  Set a time limit, and stick to it.  And DRINK A LOT of water!
  3. I need to remember, I can only do so much!  And sometimes, I can’t do anything.  I feel guilty when I tell people I will be somewhere and then I can’t show up.  I need to tell more people either, “No.”  Or “Maybe.”  If people don’t understand, then do I really want to be doing anything with them?
  4. Since I have gluten and fructose intolerance, there are a lot of things I can’t eat.  Too often I go out and don’t realize we may not be home when I get hungry.  I must plan better for this.  Make sure there will be food I can eat at parties.  The easiest way to do this is to bring something.  When we are going out and about I need to make sure we will be near places I can eat, or keep food with me.  I used to carry protein bars in my purse that were gluten free so I’d always have something.  Now, it’s more difficult.  I haven’t found a protein bar that doesn’t have things I can’t have because of the fructose.  I must find something!!
  5. I used to never get over heated.  I have a convertible, and I love to drive and feel the heat, and wind.  On Wednesday, I was on my way home and got stopped due to road work.  I was sitting still for about 20 minutes.  When I got home I felt sick, and dizzy.  I got way too hot.  How can I prevent this?  I have to keep WATER with me.  Not soda, WATER!  If I get stuck in traffic, I need put the top up and turn on the AC.
What do I want to accomplish this summer?
  1. Complete all the requirements for becoming a licensed foster parent.
  2. Perhaps take a vacation…something we haven’t done in a very long time.  Even a long weekend would be nice.  But traveling scares me…I’ll have to be prepared.  And we really don’t want to leave our dog.
  3. Take care of me.  (read *pamper* here)
  4. Read more books.  I really don’t know if this is possible, but I’ll give it a go.  (I love to read!)
  5. Enjoy my birthday!  (July 2nd)
  6. Spend time with hubby.  (I don’t really care what we do, just as long as we do it together.)
  7. Enjoy my pets.  Especially Sandy, on July 2010, the vet told us that Sandy had 6 months to a year to live.  I don’t think anyone told her!
  8. Enjoy driving.  (something I haven’t been able to do much for the last 2 years.)
  9. Enjoy our garden!  This is the first year we’ve tried growing a vegetable garden.  I keep looking at a friend’s garden and think…”Wow, why does their garden look so much better than mine?”   Oh yeah, they aren’t using all organic practices.  Let’s just say I now understand why organic produce cost so much more.
No matter what your plans for the summer, be sure to take care of yourself.  Keep things close to you that make you feel good.  For example: I take a bath every night right before I go to bed.  It really helps me get to sleep, feel more relaxed, and hurt much less.   I put lotion on every night, often my husband puts special peppermint lotion on my feet.  (My feet get hot at night and the peppermint makes them feel cool.)
Spend time with people who are good for you.  Avoid people who are toxic.  (you know who they are, you may feel like you have to spend time with them for some reason or another, maybe they are family, but you don’t.  Just say “NO”.  You can do it.  I know you can.)
Enjoy yourself.  That’s the most important thing.  Find ways to make your life easier, and more enjoyable.
Then pass it on.  Let other’s know what secrets you have found that make you feel better.
What’s your plans for the Summer?

Company Coming! Excitement and Worry all rolled up.

On By WendyIn Disability, Gluten-Free, Hip pain, Life, PainLeave a comment

Tonight one of my very best friends and her husband will be coming for a visit.  Not only is Kym a great friend, she was once my roommate, and my maid of honor. (Which I think was a great honor considering I only had one attendant.)

During our wedding ceremony. (l-r) Kym, Wendy, Stuart

I haven’t seen Kym and Camden since their wedding 4 years ago.  Unfortunately, we live on opposite sides of the US, about 3,000 miles apart.  They live in San Francisco, CA, we live in Durham, NC.  So, of course, I’m VERY EXCITED!  However…

I’m also a bit worried.  Kym and Camden are very energetic people, they love to site see and just go, go, go.  Well, the go, go, go is a little hard for me.

Let me explain with a little side note:  Yesterday I was telling Stuart how much I hate it when a doctor asks me to rate my pain on a number scale,  0 being no pain and 10 being pain that sends you to the ER.  I think the amount of pain it would take to send me to the hospital (someone who absolutely HATES to go to the ER) a lot different than someone else (who doesn’t mind going at all).  I told him that the scale should be 0 for no pain and 10 for when I pass out from the pain, and I really think they should tell you what 5 would represent.  Stuart said he was glad that he hasn’t been in pain that often.  Once when he broke his arm, and when he had to have surgery on his knee…but not much.  I confessed that I can’t remember a day that I haven’t been in some amount of pain.

Now I guess you can understand why I’m a bit worried.  I really want to show my friends a good time, and do things with them, but I’ve been in a lot a pain lately.   I know they’ll understand, and wouldn’t dare think of me being in pain so I can do something with them.  However, I don’t want them to be bored.  And I really WANT to do things.  *sigh*

I’m still having trouble with my arm with pain and tingling, my wrist with carpel tunnel, my hip is still giving me trouble, and I can’t seem to walk very far without pain in my feet, calves, and knees.  I feel so old.  I feel like I can’t do much at all before I get so tired (or hurt too much) and have to sit down and rest.  Every night I’ve been taking a hot bath before bed, it seems to help dull the pain, especially in my legs and hips, so I can go to sleep.

I keep waking up in a lot a pain, and I feel exhausted.  I wonder if I’m hurting so much while I’m sleeping that I don’t sleep deep enough to rest?

I’ve been baking today, and I’m exhausted.  I was trying to make gluten free hot dog buns.  After 3 tries, I gave up.  So no buns for the cook-out tomorrow.

They’ll be here in about 3 hours.  Think I might take a nap.

Living in Limbo, life with an Invisible illness. A Guest Post

On By WendyIn Chronic Illness, Guest Post, Medical Tests, Meniere's Disease17 Comments

I’d like to thank Maureen from Sunshine and Chaos for writing a very emotional post for us.  Maureen is on a mission to embrace the new her, a person with an unnamed invisible illness.  Her blog is very up beat, and inspirational.  I suggest everyone check it out.

Maureen told me that she thought this would be an easy post to write, but found it very hard.  She said everything about her condition is just so general.  “When you not on firm footing you’re just out there flailing.”  I think she did a great job!

I have a problem.

My problem is that I’m in limbo like my friend in the picture, Wile E. Coyote.

I have something wrong with one of my ears. I say something because the ENT doctor could only say “it” happens to a lot more people than what is realized and to try to find “a quality of life”.

My “it” is balance issues that started in 2000 and my having a chronic illness was finally confirmed by the ENT in 2005. What I have is basically an invisible chronic illness with no name.  A “we know how you’re being affected, just not what is causing it“.  I feel like Wile does in that picture. On firm ground one minute, in limbo waiting for gravity to take effect the next. I was healthy one minute, living in limbo the next without a specific diagnosis. No specific diagnosis, no possible cure,  no plan of action that can help me get back on my feet and be a contributing member of society again.

The doctors would always ask me if I would get dizzy and I would say no.  A big part of my problem over the years is that I rarely got dizzy. If I did, it didn’t last long and I would attribute it to something else such as getting up too quickly or having a head cold.  I did have a few dizzy spells a number of years ago due to water in the ear and I don’t get anything like that.  I NEVER FORGOT that feeling of the world spinning. And, I would add,  my mother had Meniere’s and I saw how she reacted and dealt with it.

What it really felt like at the beginning was “the flu that wouldn’t go away”. Sounds like a bad horror flick, doesn’t it? On my bad days, that’s what it still feels like.  I had high blood pressure for the first time in my life, light-headed, slept a lot, no energy, ached a bit, lost my appetite and had a bobbing feeling in my head. Different conditions and diseases were ruled out. The flu eventually went away and also ruled out were chronic fatigue syndrome, mononucleosis, peri-menopause, thyroid, my heart (in the beginning it would beat irregularly and at times fast), brain tumour (I would get a tingling sensation up the back right side of my head that would turn into a headache) and whatever else all those tubes of blood and other tests might confirm.

The best word to describe how I now feel is disequilibrium. Here’s a definition from the U.S. National Library of Medicine:

Disequilibrium is a sensation of impending fall or of the need to obtain external assistance for proper locomotion. It is sometimes described as a feeling of improper tilt of the floor, or as a sense of floating. This sensation can originate in the inner ear or other motion sensors, or in the central nervous system.

Now that I know that the problem starts with my ear, I believe keeping control of my head movements has reduced most of the symptoms.  But they have only been exchanged with other symptoms and side effects.  What I get is a woozy feeling, like I’m in a boat and bobbing up and down on small waves.  I can be sitting still and it will feel like someone is shoving me to the right. I can stagger like I’m a bit drunk but be stone-cold sober.  Changes in the weather affects me so much more.  Before, it meant random sinus headaches.  Now I start feeling off-kilter and want to stay in bed.  Sometimes going for a walk will help me feel better, sometimes a walk only makes things worse.  I will pace the hallways of my house just so I can have a “walk” and avoid being far from my bed in case I have to quickly lie down.  I have a stationary bike that I use so that I can stay seated and not move my head.  I take my cell phone with me on even the shortest of walks, just in case I have to call a cab to get home.  On days when I want to, or have to do something, I’ll do it and have to lie down afterward so everything in my head can calm down.  And, the rare times when I’m close to feeling “normal”, I sometimes overdo it and then I can easily pay for it for a week afterwards by needing to stay in bed.

After all these years, I the person, looking back objectively, can appreciate that in the beginning the doctors couldn’t tell what was going on with me. Everyone, including me, thought it was a really bad case of the flu.  But, that idea lasted only so long. I understand that, even as the months progressed,  my symptoms were still, general in nature.

However, I the patient, wish the questioning went beyond asking “light-headed or dizzy” and included asking about “balance”.  I wish I didn’t live in a restricted-budget medical climate where a doctor is not able to order tests based on gut instincts and experience or not have someone else question some of the tests. That actually happened during one of my tests – a doctor questioned why my doctor ordered a test.  I have never had a doctor do unnecessary tests.

I also wish that the family history of Meniere’s was taken more seriously. My mother had it and I would ask if I had it or if there was a genetic connection.  I was always told no but it seems more than a coincidence that a close relative suffered from ear problems.

What I really wish is that I had a disease with a name.  I could have a fighting chance at treatments or a cure.  It would bring legitimacy to what I’ve been dealing with all these years.  People deal with illnesses in different ways.  I was only in my mid 30s when I first became sick.  You’re supposed to bounce back, not stay sick.  Some people understood.  They were usually the older ones and had friends or family dealing with various illnesses.  The younger they were, the more chances that I wasn’t believed.

Not being able to be as physically active means that my overall health and stamina has deteriorated.  Heart disease and diabetes runs in the family.  How has the loss of activity sped up the possible development of these diseases for me?  How many years have been taken off my life?  How will my final years be lived out?  We never know how things will work out in the end, but we don’t want to rush things along.

As the saying goes, I truly am sick and tired of being sick and tired.  And being in limbo means not much chance of going back to a normal life.

There are so many things that Maureen said that rings true, isn’t there?  I wrote a post not too long ago about being happy about a diagnosis.  Not that I had the disease, but that it now had a name.  It is so very hard to have a disease that doesn’t have a name.  As Maureen said, it would bring legitimacy to her suffering.   

Thank you so much, Maureen, for talking about such a difficult subject, and speaking so honestly.

Orthopedist Appointment – Ouch!

On By WendyIn Hip pain, Medical Tests, Pain4 Comments

Today I had a follow up appointment with my Orthopedist about my hip.

This shows where part of my pain is located. (image courtesy of http://www.cartage.org.lb)

Last night I was in the kitchen and turned from the sink to the counter behind me and my hip popped and hurt.  It hurt for most of the night.  (one of the reasons I had a hard time going to sleep).  This was good information for the doctor.  He took this information and then moved my hip all around, causing a lot of pain.  He came to the conclusion that my psoas may be need to be “clipped”.  (My husband reminded me that the doctor said that he would “release” it.  I remember hearing both terms being used, but perhaps “releasing” is more descriptive of what he’s actually talking about.)   His office is getting a new ultrasound machine, hopefully, next week.  He wants to look at my hip under a live ultrasound to see what it’s doing.  Perhaps we will be closer to getting some answers.

While I was there I decided to ask him about all of the pain I’ve been having in my shoulder, neck, down my arm….and my hand is asleep every time I wake up in the morning.  This has been bothering me much more than my hip lately.

My doctor examined me.  He moved my arm all around, had me push this way and that, and heard the crunching in my shoulder.

He said I have some trouble with my rotator cuff.  He also said mentioned that I have some carpel tunnel troubles.  (I knew that.)  He said that my hand shouldn’t be going to sleep because of my rotator cuff, unless it is very inflamed.  He said it was probably the carpel tunnel, but I mentioned that it doesn’t get better when I where my wrist brace.  So…we just don’t know yet.  He said I need to strengthen my rotator cuff first, and we’ll go from there.

On a better note, my ear isn’t hurting any more, and I haven’t been dizzy any more.  Yay!!

Lately my blog has been having some problems.

I don’t know what happened to my Theme on my blog, but it just wasn’t showing up right.  Some technical difficulties, I guess.  So I tried to fix it, and well, I lost everything that I had in my right sidebar.  I’m trying to fix it up, but bear with me.  Please.

image courtesy of butnowwhat.com

I’m pleased to announce that coming up next on Picnic With Ants

Maureen from Sunshine and Chaos writes about living in limbo!

Stay tuned!!

Thankful that I know…

On By WendyIn Chronic Illness, Dietary Fructose Intolerance, Disability, Fructose Malabsorption, Meniere's Disease11 Comments

When you are suffering for a long time and don’t know what’s wrong, when doctors look at you like it’s all in your head (and some even tell you that), when it takes years and still no one knows…it’s so nice to be diagnosed.

art by Aquatic Fishy at Deviant Art.com

Some of my illnesses were diagnosed fairly quickly, and still some things are still pretty vague. (chronic hip and pelvic pain – ummm, why?)

I know it may sound weird but I was so happy when I found out that I had a wheat allergy, gluten intolerance, hypothyroidism, Meniere’s, hypoglycemia, a B12 deficiency, a Vitamin D deficiency, and finally and most recently fructose intolerance.

Each of these diagnosis took a long time to discover.  Especially the wheat allergy (gluten intolerance) and Meniere’s.

For years I was sick.  I saw a note in my medical records one time from a doctor that said, “This patient comes in with a laundry list of complaints….”  I was shuffled from doctor to doctor.  I was told I had Fibromyalgia, chronic fatigue, and IBS.  I had to learn to live with it, and I did for years.  I even started a local Fibromyalgia support group.  (I’m so very thankful for one very special friend that came from that group.  You’re great Lisa!!)  But I never stopped looking for an answer, or something that could help.

Finally, I was reading about food allergies and asked my doctor to test me.  Come to find out I have a wheat allergy.  Thank Goodness, I found out.  I stopped eating wheat immediately, and started feeling so much better within weeks.  Then I read about how many people can not tolerate gluten, and the symptoms for celiac disease.  A lot of these symptoms fit me, so I decided to stop eating gluten, and it was like a light switch came on in my life.  I no longer felt like I had the flu all the time, or that I needed to sleep most of the time.  I had a new lease on life.  I’m so grateful.

I had vertigo attacks on and off for years, with a full feeling in my ear and a constant ringing, but no one could tell me why.  One night after having vertigo and throwing up over 8 hours my fiance (now my husband) took me to the emergency room.  The doctor there told me that he thought I may have something wrong with my ears.  Perhaps the crystals that some people get, or something else that causes vertigo…he even mentioned the possibility of Meniere’s.  I loved this doctor.  I was so grateful that he believed that there was something wrong with me, and I wasn’t just getting food poisoning over and over.  (yes, that’s what I had been told.)  So I went to an ENT, and he said I have Meniere’s Disease.  I was so thankful to know something.  Am I happy that I have Meniere’s? NO.  But I am just so thankful that I have a diagnosis.

I’m so happy to be involved in the research going on at Duke to find out if an imbalance of Cerebral Spinal Fluid (CSF) may be one of the causes for vestibular vertigo in some Meniere’s and Ramsey Hunt Syndrome patients.  I was so very happy to find out that I had CSF leaks and they could patch them. My life is a new again.  (no vertigo for over 2 months now!)

Most recently, after 7 months of chronic, almost daily, diarrhea; and a battery of tests, I am so thankful to find out that I have Dietary Fructose Intolerance (or Fructose Malabsorption).  Yes, it makes eating much more difficult, but I’m already feeling better after just one week.  What a difference knowing can make.

Am I thrilled to have so many chronic illnesses?  Of course not.  But I’m so thankful that I know.

I’m also thankful for all that I’ve learned from having chronic illnesses.  I’ve grown so much as a person.  But that story is for another day.

Thank you all for supporting me through all of time trials.  Isn’t it great to know?

Guilty Pleasures while having a Chronic Illness

On By WendyIn Chronic Illness, Life3 Comments

The theme for this edition to the PFAM (Patients For A Moment) blog carnival is Guilty Pleasures.  You can see all the submissions on Sick Momma’s blog starting March 9th.

A Guilty Pleasure is defined as something one enjoys and considers pleasurable despite feeling guilt for enjoying it.

I have a lot that I feel guilty for, but not many pleasures that I feel guilty over.  But I do have a few…

Each of these I feel a little guilty about because I either feel like I should be at least trying to do something more productive, it cost money and I don’t work, or because I feel like I’m taking advantage of my husband.

image from ucd.ie

I love spending time on my computer, reading blogs and posting on my blogs.  The computer is sometimes a great escape, and it is often a way for me to communicate with other people.

image from sodahead.com

I also love that I have more time to read because of my illness.  I can get lost in a book.  They help me escape, and learn.  I will never get tired of learning new things.  I think reading helps to keep my mind active and has lessened my brain fog.  But still I often feel I should be doing something else.

image from tbcgym.com

I love for my husband to massage me.  He is such a great help to me, and I don’t get to pamper him near enough, but I love it when he pampers me.  He takes care of me all the time, but I get so much pleasure from having him rub my neck and back.  Oh and when my hip is giving me a lot of trouble, he is wonderful at trying to make it better.

I also love going to get a professional massage.  I don’t do this very often, and I always feel guilty afterward, because it cost money.  Plus, I feel like if anyone should be getting a massage, it should be my darling husband.  He works so hard, and he treats me so well, he deserves to be pampered.

image from show.com

I have a secret obsession for shoes, and purses.  I’m trying hard not to buy any new shoes or purses, but it’s so hard.  I try to find them at thrift stores, and I have found a few.  But when I’m looking for something in particular it’s hard.  Don’t get me wrong, I don’t buy a ton of shoes or purses.  I am, however, on a constant search for the perfect purse.  This is very funny coming from me because I used to never carry a purse and was proud of it.  However, now I have to carry an epi pen and an inhaler with me all the time, so I have to carry a purse.  And shoes!  I don’t buy a ton, but I have a weakness for funky tennis shoes, and shoes that look great but are still comfortable.  I don’t give in to this guilty pleasure very often, but I just can’t help myself sometimes.

image from roxyishere.wordpress.com

I also love to find great make-up and facial products that are made from natural ingredients, are gluten-free, and haven’t been tested on animals.  This is getting easier than it used to be, but it’s very hard to find a product that fits all those categories, that is still affordable, and lives up to what it promises.

image from marieclair.com

One more I really like having a manicure or pedicure, or even giving one to myself.  I love wild fingernail polish.

I keep thinking of these things that I just love to do, but feel at least a twinge of guilt when I do them.  The question is, should I continue to do them and feel guilty, should I stop, or should I stop feeling guilty about it?

I made a compromise a long time ago, and I think it’s a good thing.  I don’t over indulge in my guilty pleasures, this makes me feel much less guilty.  As much as I love shoes, purses, manicures, polish, massages, and books I don’t buy very many.  I get about 2 new pairs of shoes a year, I average 1 purse a year, 1 mani-pedi a year, and 2-3 massages.  I haven’t bought new polish in a long time, however, I have made new colors by mixing a few together.  I rarely ever buy a book, however, I love my local library!

I think the one guilty pleasure that I have that I probably need to do less, is staying on my computer.  I think I should try to limit it to less than 2 hours per day.

By incorporating these restraints I feel much less guilty about my guilty pleasures.  After all, shouldn’t we all have a few pleasures that make you feel like you are splurging?

Love Makes It So Much Easier.

On By WendyIn Disability, Life, Meniere's Disease1 Comment

I’d like to dedicate this post to everyone who loves me, or who simply shares their love with me.

I often mention how much my husband does for me.  He not only takes care of my physically when I can’t, he does housework, and he also holds down a more than full time job.  He also puts up with me when I am having a very short-tempered day because I’m not feeling well.  He does all of this because he loves me.  I can’t imagine how I would get through all of my trials without him.  (I’m really glad I don’t have to.)  Thank you husband, for being there when I’m my sickest, for listening to me when I just need to scream, for encouraging me, for being strong for me when I don’t feel very strong myself and for still flirting with me and making me feel like I’m sexy.  Your love is very important to me.  I hope you know how much I love you.

To my dear friends who still accept me as I have changed with this disease.  I know I’m not quite the same friend you originally met, but I sure am glad you stuck by me.  I love it when you share your life with me, and tell me what is going on with you and just don’t even pay attention to my illness.  Those are special days to me.  However, I am also grateful for the days you let me cry on your shoulder and tell you  how hard things are, it’s nice to be able to talk about it and know you aren’t being judged.  You have been a great friend.  Thank you for loving me.  I love you too.

To my wonderful blogging friends.  You have listened to me possibly more than anyone.  You have heard mostly my down times, and you are still here.  I love you for that.  You encourage me, and have helped me to come to terms with my illness.  You may not know me personally, but you have shared your love with me, you have reached out over many miles and given me hope, knowledge and friendship.  I thank you, and love each of you.

I would be remiss in this post if I didn’t mention the love of my pets.  Our darling dog Sandy, and loving cat Max.  They are always looking out for me.  They know when I don’t feel good and always try to make it better.  I often feel like I’m a pet pillow (at least I’m not a Pillow Pet!), but they just want to be as close to me as they can.  They are always there for me.   They warm my heart, I love them so and can’t imagine my life without them.

I’m a very lucky person to have so much love surrounding me.  It really makes living with a chronic illness easier.  At one point I thought it would be easier if I was alone, if no one cared.  Then I could just drift away and it wouldn’t matter.  I was in a deep depression and felt my life was over.  I couldn’t see how I could possibly be of any use to the world being in the condition I was in.  I’m very grateful I had some wonderful people who loved me and made me realize I had something to live for.

I love you.

This post is part of Patients For A Moment blog carnival, hosted this time by Chronic Babe.