I’m Going to Disney!

I can’t believe that tomorrow I will be taking my son to Disney World! Grant and I have been very amicable during our separation, so although it sounds crazy, the three of us will be going together!

Ever since Tyler was born it has been my dream to take him to Disney. I never thought I would, and although it’s not the smartest financial decision we have ever made, we decided to do it. I know I would have spent the rest of my life regretting it if we didn’t take him.

Since Kindergarten Tyler has been hearing about his classmates’ and teachers’ Disney experiences. He was so excited and I asked him if he thought we would go to Disney World one day. “Oh, yes!”, he said very matter-of-factly. How could I look into the face of my child who has been through so much in his young life and tell him we would never be able to afford to go? At seven years old, this will be his first vacation.

I will be using a scooter down there and I have a pack of steroids that will hopefully help with aches and pains and give me more energy. I am still scared that I may be too tired or hurting too much to be able to do everything we have planned, or that I could come down with a full flare-up of Lupus, Fibromyalgia or any of my other conditions.

It took a lot of time but we have planned our every move down there and have selected all the Fast Passes we can have. Due to so many abusing the policy, Disney no longer allows disabled people to simply go to the front of the line. Families were actually hiring disabled people to go to the parks with them, although why you’d want to see Disney with a stranger just so you can get past the long lines is beyond me. The new policy is that you speak to one of the cast members at the ride and he or she tells you that since the line is currently 40 minutes long, you can come back 40 minutes later and go on the ride with no wait.

While this does seem fair, I believe that the disabled are still at a disadvantage. When that park opens in the morning, I’m not going to be able to sprint like all the able-bodied people will. I will simply not be able to move through the parks like they will and will wind up doing less than them.

Besides writing a post-Disney post I will be uploading pictures on twitter and on my Facebook page. Please remember to “Like” my page!

Well wishes and extra spoons are appreciated!

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Stupid

The idea for this post came to me about an hour ago and I knew I had to write it quickly for fear it would fall out of my brain.

Be it depression, physical symptoms or a combination thereof I have been feeling “stupid” for quite some time now. Often I feel I have nothing to do, I feel quite bored. Even though there are always things to do with all the media available to me, it’s as if my brain can’t handle anything remotely intellectual.

I used to read a book a week, now I can’t even read a light mystery, I just can’t get through it. I can’t concentrate on the news or anything on television that is quality. Yesterday I tried to watch “CBS Sunday News” and I couldn’t even make it through the opening. I am just lost. “Sex in the City”, “The Golden Girls” and game shows seem to be the only programs I can pay attention to.

Blogging has become extremely difficult for me, just writing this is a struggle. I am no longer the prolific, talented writer I used to be, and I watch my once successful blog fall down the Alexa Rank and feel powerless to stop it. I cannot churn out the content required to keep people coming to my site. I look back on my posts that were smartly written, that made people cry, that gave people hope, that educated others and I wonder if I will ever be able to do that again.

As I write this ideas come into my head but I lose them before they can even get written down. In seconds they are gone.

I am disappointed in this post. It is redundant and I can’t even think of the other ways to describe how displeased I am with it. The words don’t come.

Will I live this dumbed-down existence for the rest of my life?

I think I will stop here.

I guess no matter how I write my blog or how often, my goals for it remain the same. That people who are experiencing this will know that they are not alone, that I will educate others about how this feels and that I will receive support from people who read this.

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Positive

So I decided to go to my Rheumatologist appointment despite having very little symptoms of Lyme Disease or any of my diseases such as Lupus, and I want to thank those who commented here and on Facebook who convinced me to go.

I saw the doctor at the Cleveland Clinic and explained to him my situation, that I had Lupus and some other things but would like to be tested for Lyme due to past symptoms, a past positive test and a current symptom of fatigue.

This is really scary but he was the third doctor here to ask me if I had seen a bullseye rash, and I hadn’t. Doesn’t he, a rheumatologist who claims to specialize in Lyme Disease, know that 50% of Lyme patients have never had a bullseye rash, or that they might have not have noticed one since it could have been on their back or scalp?

He also talked to me about my Lupus and judged me not to have it, even after I told him I have tested positive for it many times.

It seems that the Rheumatologists of the Cleveland Clinic, from what I hear from friends and my own experiences, are fond of telling people they do not have any of the diseases that they have been diagnosed with previously. I’m not really sure what’s going on over there but this is the only hospital my insurance company will let me go to.

He ended it with, “I don’t think you have Lyme, but if you insist I will test you for it.”

I insisted.

He said he would also test me for Lupus.

When he called me with the results he was unapologetic but did sound shocked as shit that I was indeed positive for Lyme and was also positive for Lupus. He prescribed a two week course of antibiotics. I haven’t started that yet because I am afraid of a Herxheimer Reaction, which can actually make you sicker before you get better. My friend who has Lyme and is pretty well-versed on the disease, advised me to start taking it on Monday, when Tyler will be in school.

But as I researched further and looked at my test results, more questions arose. What I tested positive for showed that I had been recently infected, and the other test for long-term exposure for Lyme was negative. Do you mean to tell me that I had to move to Ohio to get Lyme? This would mean that all of my past symptoms were not in any way related to Lyme. In addition, the test can be a false positive so do I even have Lyme?

I have a call into the doctor about my results and any future testing. I will keep you posted.

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Thinking About Canceling My Appointment, What Do You Think?

Last month I was having extreme fatigue. The kind where if you could even make it to a shower, that would be your only “event” of the day, you were done. Where it hurt to life your arm. Where you can’t get off the couch and you just have to let your laundry pile up and the house get messy.

I went to another doctor in my regular doctor’s group since she couldn’t fit me in. She was convinced I had Mono and tested me, along with my thyroid. Everything came out normal but the extreme fatigue was still there.

There’s been an avenue in my odyssey of illnesses that I have not explored, although many people have urged me to and that is Lyme Disease. Lyme Disease can often be misdiagnosed as Rheumatoid Arthritis, Lupus or Fibromyalgia and of course I have all three.

About 12 years ago, I did test positive for Lyme and my doctor wanted to start me on the short course of antibiotics that can be effective if the disease is caught early. I wanted a second opinion so I saw an Infectious Disease Specialist. She told me that I tested negative, that I was not sick, nor did I look sick. About six month later, the pain in my feet started on what was to be a lifelong journey.

Looking back with the knowledge that I have gained from being a professional patient, I wonder why the Infectious Disease Specialist didn’t give me a third, and deciding test. I also now think, “What really would have been the harm in taking the antibiotics?”

When I saw my Primary Care Physician to tell her I was still fatigued, I mentioned Lyme Disease to her.

“Did you ever have a bullseye rash?”, she asked. I told her I had never noticed one and she said she never tests anyone without a bullseye rash. Which is a little scary because many people do not present with the rash or, if they are bitten on their scalp, never see it.

After speaking with a good friend in the “Lyme Community”, I was given a referral of a “Lyme Literate” doctor. He was a Rheumatologist who noted Lyme as one of his specialities and was used to dealing with people who had Lupus and Rheumatoid Arthritis too.

But making an appointment with him proved to be a challenge. When you schedule an appointment with any Cleveland Clinic doctor, you are sent to central scheduling. The woman scheduling me asked why I wanted to see the doctor.

“Because I am having symptoms of Lyme Disease.”

“Have you been diagnosed with Lyme Disease?”

“Well…no.”

“You cannot see the doctor unless you are positive for Lyme Disease.”

“But the doctor is the one who will make the diagnosis of Lyme Disease!”

I hung up with no appointment made, with ideas running through my head.

I could say I want to see him for Lupus and when the scheduler asked if I had a Lupus diagnosis I could say yes, and get in that way. Once I was in I doubted they would throw me out for lying.

A few days later I saw the doctor who tested me for Mono again because I was having Costochondritis symptoms and explained to her my difficulty. She very nicely asked her office to schedule me an appointment and I was in, on February 21st!

So of course, just like the car who doesn’t make the weird sound when you take it to the mechanic, my extreme fatigue has gone away.

Having no symptoms of Lyme or anything now, I feel it would be very difficult to get this doctor to test me for Lyme. I don’t want to look ridiculous.

So I’m seriously considering canceling my appointment. I waited a long time for it but right now I do not consider myself physically ill and feel this would be a waste of money and time for both of us.

What would you do? Would you see a new doctor without any symptoms?

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Struggling

There has been nothing more upsetting than losing the ability to be able to blog because of my depression. The ideas that used to inspire me to put up three to four posts per week are gone. It is too difficult to get my thoughts together to write something cohesive. It is hard to write this post and I am already so disappointed in it. Will I have the words to make it long enough to mean something?

I look back at my past posts. I used to write well and inspire people. I was a good writer.

Writing and making a difference was a great accomplishment for me. My blog gave me purpose.

I am doing better. I realize that I have let a lot of things slip by and I am trying to dig out from under. Balancing my checkbook, filing for bankruptcy and divorce, down to small things like some returning I need to do. I realize that I am unhappy with how my house looks. There is so much that needs to be done when you slowly come out of depression that it is overwhelming and I often want to hide under the covers again, and sometimes I do. Then there is the frustration that I have failed to do what I needed to get my life back in order.

I can’t help feeling like I am on the fringe of society. That I am looking in on what the “normal people” are doing and I wonder if I will ever be one of them again.

Will I ever “get right”? Right now Tyler says I am the best mom in the world. Will he one day resent my mental illness and be ashamed of me? Will he blame me if he has inherited my mental conditions?

I’m not proud of this post, but at least I got it out.

What has been your most difficult struggle lately?

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The Loss of Mommy

Right around Christmas it happened.

“Mom?”

“Mom, I just got my highest score ever!”

MOM

MOM???

How did this happen?? Where would you learn such a word??

I called up Grant and told him Tyler was calling me “Mom”, and he said he was sorry. Then he got “Dad”.

Ever time Tyler calls me “Mom” I feel a pang of sadness. I can’t get used to it. I feel like I will never get used to it.

Tyler is still my baby, but now, I am “Mom”.

Where has Eeyore gone? The stuffed animal you used to take everywhere with you. The one you couldn’t fall asleep without. The one you would secretly hide in your backpack when you went to kindergarten.

“Mommy” and Eeyore are gone. For now I’m going to treasure that you still watch “Umi Zoomie” and still believe my kiss can make your boo boos feel better.

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Christmas At Our House

Jacques, Tyler and I had a lovely Christmas. Grant and I have been getting along very well so I had him over too. A very modern kind of family!

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Bed and Breakfast Experience

For my birthday, John and I decided to take a one day getaway to a local bed and breakfast in our town. We stayed at the Homestead Bed and Breakfast right in our downtown city of Willoughby.

We stayed in the Victorian Rose room:

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We dined at Lure Bistro and dined on Maine lobster and crab encrusted grouper:

I know this photo has too much light but I thought it was a nice one of the two of us.

I know this photo has too much light but I thought it was a nice one of the two of us.

And we had a delicious breakfast of egg cups and cranberry and pecan pancakes with maple cinnamon syrup!

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It was a wonderful time. Hopefully we will do it again next year!

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Halloween 2013!

The weather for Halloween night was rainy and windy but a brave Dark Knight remained undaunted. A cowardly mom followed in her car while dad butler Alfred accompanied Master Bruce. All was right in Gotham as Batman took in quite a haul of candy.

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Happy Halloween to all!

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So I Guess I’m Just Depressed

This “thing” has been hanging on to me for sometime now and I have finally decided that I am simply depressed, rather than there being a physical reason for the way I am feeling.

This has been going on since about mid-July. It is by far not the worst depression I have ever had; the one where ever single second is a living Hell. But my routine has been to get out of bed, get on the couch and watch the “Golden Girls”, then “Let’s Make A Deal”, then “The Price is Right”. I usually watch the noon news and then two hours of “Sex in the City”.

That’s how I’ve been rolling lately.

I feel so uninspired, so uncreative. It is difficult for me to come up with blog posts.

I try to read books but I am unable to concentrate on anything.

I am unhappy that I have still not lost the weight caused by the antidepressant I was taking.

On the other hand, I’m not exactly doing anything to help myself. I cancelled my doctor’s appointment and my appointment with my therapist, feeling like I just couldn’t get out of bed to help myself. And I have not done any physical activity, which could help a myriad of my conditions.

I ask myself, “Is this the best there is for me?”

I decided that I am going to get a second opinion from the Cleveland Clinic. Am I on the right meds, should I be taking more of the same meds?

In the meantime, this is me, still looking for answers.

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