Tag: chronic illness

I’ve been a Slacker.

On By WendyIn Chronic Illness, Dietary Fructose Intolerance, Fructose Malabsorption9 Comments

I know I’ve been very slack at updating my blog lately.  I hope you haven’t given up on me.

Remember when I posted that I had a little dizzy feeling, not much, just a little off?  Well, it happened again during one of our classes.  I stood up during the break and the floor moved under me, this was pretty alarming considering we were on the 6th floor.  Then I realized that no one else noticed it, so that could only mean it was just me.  *sigh*  I was also having pain in my left ear.  I saw the audiologist for a follow-up on my hearing aids, and she said my ear drum was a little red, so I could be getting an ear infection.  This was on a Thursday, I had my physical scheduled for the next Tuesday so I decided to have my doctor look at it then.  On Tuesday, my doctor looked and said I had one of the worst classic ear infections she has seen.  I was told to not wear my hearing aid for a week or so.  It was very painful, and I was off-balance for about a week, but I’m so glad it was something that could be easily fixed.  And not a relapse.  Whew!

I was surprised to find out that my blood work, cholesterol and all that stuff, was better this year than it was last year, and I weigh about 40 pounds more now.  Go figure.  It seems that elevated triglycerides can be caused by fructose intolerance.  My triglycerides have been high for years…many years!  They are still a little high, but much lower than they have been in a long time!  Now if the weight would just start to come off.  I just don’t understand why I’m not loosing weight.  One step at a time I guess.

Fostering Classes have taught me so much.  Not just about becoming a foster parent, but also about myself.  I’ve been looking inside much more than I have in a long time.  The classes have been emotionally draining, but I feel I’m much more resourceful now.  I may need help, but now I feel that I’m more prepared at knowing where to get the help I will need.  I also know that no matter how much I learn, I will feel a bit lost when a child actually comes into our home.  Hands on is going to be much different from in a classroom.

I am so disappointed that we aren’t getting more support from our family and friends.  My father has hurt me to the extent that I am at a loss for what to do.  We haven’t ever been close, and I know that he is very prejudice.  Not only did he say that he could not accept it if we got a child of a different race.  He told me that he didn’t believe that I would be happy with this.  He is completely against it.  If it comes down to me choosing between my father and my child, my father will lose.  (but really, he lost me a long time ago)

My sister and I were estranged for many years.  This past year we started talking again.  She doesn’t say much.  A couple of sentences here and there, nothing of substance really.  I’ve mentioned to her about us fostering in 3 separate emails, and she hasn’t acknowledged it.  I’m certain she feels the same way my father does.

It’s hard feeling like I would be better off if I just didn’t have a family.  Since my mother died, I haven’t felt like I had a family at all.  I’ve remained in touch with my father and sister because it makes it easier if I want to see or even talk to anyone else in our family.  (like aunts, uncles, cousins..)  But recently, I’ve realized I haven’t had much contact with any of these people in years.  So why do I continue to try?  It’s so confusing.

One of the exercises in our classes we had to write down 5 things we were close to, that made us who we are.  Most people included their family.  I wrote: My husband, My pets, Art, Friends, and my Blog.  The friends I’ve made from my blog have been more supportive of me than my family, and most of my in person friends.  Thank you all.

Working Girl

On By WendyIn Chronic Illness, Meniere's Disease7 Comments

First, I’d like to thank all of my friends for checking on us after the storms hit North Carolina.  We were very fortunate, all we had at our house was a lot of rain.  The tornadoes came through the next town over.  Raleigh was hit pretty hard, but Durham wasn’t hurt.  It means a lot to me that so many people cared enough to check to make sure we were alright.

This week I’m working for my husband’s company.  His boss and wife are on vacation, and they needed someone to answer the phones and asked if I would be interested.  I was thrilled that I could say yes.  Just think a short time ago I couldn’t commit to anything like this.  Also, I couldn’t hear well enough to talk on the phone.  Thanks to my new iCom link for my hearing aids I can hear the phone right in my hearing aids, it’s great.  It’s like having a blue tooth in both ears at the same time.

iCom
iCom

This little box connects my hearing aids to my phone, TV, iPod, and/or computer.  If I’m watching TV and the phone rings it will shut the volume for the TV off so I can answer the phone.  How cool is that?  I just love this little box.

I’m still so amazed at how much my life has changed.

However, last night I had something unsettling happen.  I was putting my hair up in a pony tail, I turned from the mirror and the world did a little dip.  Just for a second, and it didn’t come back.  But before I would have thought that was the beginning of a vertigo attack.  My stomach did a flip-flop, but that was all.  Hopefully, it’s nothing, but when you’ve had my past experiences you know it could mean something.

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?

For only having 3 hours of sleep I’m doing pretty good.

On By WendyIn Chronic Illness2 Comments

A little tattered around the edges, but all in all, not bad.

I could not sleep last night.  Hopefully, that will be rectified soon.  All day today I’ve been feeling like I’ve been right on the verge of an attack.

We went out this morning.  (I was determined.)  To go to the Farmer’s Market.  There were icy patches, so I stayed in the car and just let Stuart run up and get our pre-ordered box of goodies from one of the local farms.  (Carrots, Radishes, Italian Leaf Broccoli, and Spinach)  Next stop, pick up a prescription for me at a local pharmacy. (Not the pharmacy we usually use, but my insurance won’t cover one of my prescriptions and the drug company has a plan with a certain kind of drug store and if I buy from them it only cost me $60 a month instead of about $200.  I’ll buy from them.)  Then off to breakfast.

After a small breakfast we went to the library, and I was running to their bathroom…I just love having to be close to a bathroom all the time.  We dropped off read books, and picked up ones that were on hold.  I started feeling funny so I took a Valium and Phenergan.  (and dropped all of the pills in my little holder all over the floor right were people have to walk through to get in the library, *a thank you to my lovely husband for picking them up for me.*)

Then off to our regular pharmacy, but as we pulled in I said, “I need to go home.”  Yes. the world was starting to spin.  We got home, got a suppository, and settled down.  All was decent with the world.

However, about 7pm I started getting a migraine.  Guess what we were picking up at the drug store?  You guessed it, my migraine pills.  So now, my head hurts.

I hope I can sleep.

Stuart and I had a long talk about what happened yesterday.  I feel much better about things.  I think he does to.  We have to work hard to not let things escalate to that point again.

Sometimes in the middle of the night I will wake up and write.  Well, the other night I wrote about living in fear.  This disease leaves us living in fear all the time.  We aren’t just afraid of an attack.  We’re afraid to make plans, we’re afraid to be happy because it could be taken away so quickly….I’m just so afraid.

Well, I’m not going to be locked in this cage with fear any more!  Yes, I will respectfully be afraid of an attack, but I have symptoms that tell me one is coming on.  Why should I be so afraid when I’m not having symptoms?

I need to make the most of my Good Days!  A lot of the time I use those days to catch up on house work.  Well, that’s all well and good, but I need to start having fun.  And Stuart has decided that on my really good days he’s going to take time off work and we are just going to go and spend the day together.  (he has a lot of vacation time built up, and if he wants he can work odd hours or on the weekend to make up time.)  The point is, we need to start taking time for us.

I’m also thinking about getting a maid to help out with the house.  We usually have a service come in and help with spring and fall cleaning, but I’m thinking I may need more help than that.  I have nearly $3000 saved from birthday and Christmas gifts, I think I’m going to take some of it and get a maid to start coming once a month.  This would take a huge load off of my mind, and it take a lot of responsibility off of Stuart.  (I think he will agree.)

So considering the fact that I’m running on 3 hours of sleep.  I think today is looking pretty good.  Tomorrow, has to be even better.

I think I got Glutened.

On By WendyIn Celiac Disease, Gluten-FreeLeave a comment

It’s so hard to know for sure, with all the GI trouble I’ve been having, but this is different.

Last night after dinner.  Which was very good, by the way, my stomach started hurting so bad.  I ate a brand of “Gluten Free” pasta that I don’t normally eat.  I have eaten it before, but only once or twice.

I read on the internet today and it said that they make their gluten-free pasta in the same facility that they make their regular pasta.  It does not say that on the package.  It doesn’t even say that on their website.  I found it on a Celiac site.  I tried to contact the company and the Contact Us link wasn’t working.  I really thought this was a reputable company.  Today, I’m questioning that, because I feel really bad.

All night, I kept waking up with my stomach hurting and with horrible gas pains.  I told Stuart that I felt like I had piranha in my stomach trying to eat their way out.  Pepto was my very good friend last night.  I must say, I didn’t get a lot of sleep.

Today, I still don’t feel good, and I can’t stay out of the bathroom.  This time, it’s very painful.  My stomach really hurts, like it used to before I stopped eating gluten.  My head hurts, and I ache all over.  Yes, it sounds like I have the flu, but I’m not that sick.  I just feel like crap.

I’m also very afraid to eat, but if I don’t eat, my stomach hurts.

I hate getting glutened.

Tomorrow I should feel much better.  That’s always the up side of this, it does go away.

The Meaning of Health.

On By WendyIn Chronic Illness, Health, Life2 Comments

One of the first things I need to do on my journey to better my health is to define the meaning of Health. Look at each part of the definition, and see if I already fit in to it, or decide what I need to do to get to it.

Most people define Health as the absence of disease. If you aren’t sick, you are healthy.
However, according to the World Health Organization:
“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

The American Holistic Health Association describes 4 aspects of one self and each aspect must work in harmony for the whole to be healthy.

  • The physical you requires good nutrition, appropriate weight, beneficial exercise and adequate rest.
  • The emotional you needs to give and receive forgiveness, love and compassion; needs to laugh and experience happiness; needs joyful relationships with yourself and others.
  • The mental you needs self-supportive attitudes, positive thoughts and viewpoints and a positive self-image.
  • The spiritual you requires inner calmness, openness to your creativity, and trust in your inner knowing.

We are responsible for our own health! So many of us have grown up believing that our health is in direct correlation with the health care we receive.  However, we are the only one who can make the lifestyle decisions that create well-being (or health).

The American Holistic Health Association has developed a quiz to help you determine your current degree of wellness.  (Let’s see how I do?)

Wellness Quiz

  1. Do you wake up with enthusiasm for the day ahead? (very often not.  I often wake up and think, what’s the point.  I can’t do anything….but I try, every day, I try.)
  2. Do you have the high energy you need to do what you want? (very rarely)
  3. Do you laugh easily and often, especially at yourself? (yes, most of the time I find it easy to laugh at myself and other silly things in my life.  This is why I watch cartoons.)
  4. Do you confidently find solutions for the challenges in your life? (I’m trying very hard to do this.  Sometimes I get overwhelmed, but I’m trying.)
  5. Do you feel valued and appreciated? (I feel loved.  Valued and Appreciated?  I don’t know.  I think my husband feels these things for me, I just often don’t see why.)
  6. Do you appreciate others and let them know it? (I do try my best to let others know how much I appreciate them and care for them.)
  7. Do you have a circle of warm, caring friends? (I think so, but lately I’ve been feeling like that circle is getting smaller.)
  8. Do the choices you make every day get you what you want? (I don’t know.  Sometimes I think they do, other days, no I don’t think so.  So I’d have to say, the choices I make on some days get me closer to what I want.)

“If you answered “no” to any of these questions, congratulations! You have identified areas in your life that you may want to change. This can be valuable information.”

So I have some work to do.  Of course, that’s why I’m here.

Any Suggestions?

I enjoyed reading and getting much of this information from AHHA web site. I’m sure I will refer to it many times in the future.