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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To My Son on HIs Seventh Birthday

Dear Tyler,

I cannot believe you are seven already! Where does the time go?

You have had a lot of changes this year, the hardest being the fact that your daddy and I have separated. You do seem to have adjusted well to it, spending part of your week with me and part with daddy.

Last night we ate at Eat N’ Park, which you call Smiley’s because you like their Smiley face cookies. You ate spaghetti there because you think they have the best spaghetti in the world.

You loved your presents; The Headless Horseman and Man-Bat mini figures, a toy from the Lego Monsterfighters collection, Finn in the Jake suit from Adventure Time, and more of the superheroes from Fisher-Price’s Imaginex. You said this was your best birthday ever.

You look forward to your party next Saturday.

Life has been pretty good of late.

You are satisfied with toys for now, but I worry about the things you will need for the future; a car and college. I worry about what your daddy and I will be able to provide for you on our limited disability income. Last week you said to me, “Mommy, why don’t you get a job so we can have more money? Why doesn’t daddy?” You are beginning to know the truth. How will this impact your future? Will you resent our illnesses and the impact they had on you?

You look forward to Halloween, your favorite holiday. At first you said you wanted to be The Flash but now you want to be Batman. You always change you mind!

You love playing soccer.

You are doing very well in school, better than we expected. I am so proud of you!

Tyler, I hope you will never feel deprived and that we were good parents.

Right now you are seven. Quite a big boy. I wish you could stay this way forever. You still hold my hand and call me Mommy.

Happy birthday baby.

Love,

Mommy

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Tuesdays With Tyler: Summer 2013 Part II

Continuing with Tyler’s summer:

This was our view of the Lighthouse of Fairport Harbor. Tyler and I climbed to the top! You can see a tiny Tyler at the bottom of the lighthouse:

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Here is Tyler with a picture of a Coast Guard officer. If you look closely you can see that Tyler has unzipped the officer’s fly:

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We also went to Senecca Caverns. I really like this picture of us!

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We wrapped up summer Labor Day weekend with a trip to Headlands Beach State Park. Here he is with his friend, Owen:

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I hope I gave Tyler a great summer! I am so sorry to see it end!

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