Tuesday, December 20, 2011

You Might Have Lyme Disease If:

I found a great humourous article on http://infectiousoptimism.blogspot.com/p/chronic-badass-article.html
About how to be a lyme badass.

Here are a few more of my own.

You might have Lyme Disease if:
  1. You have been to at least 10 different doctors, have received at least 10 different diagnosis and have been given at least 10 different medications to try at each appointment.
  2. When somesome says, "Do you have anything for a headache?" and you produce 50 pill bottles of various items.
  3. You spend more on prescriptions than you do on your food bill.
  4. You accidentally cut your PICC line in half while cuttting off the saran wrap used to cover the PICC line so you could shower and feel human.
  5. You single handedly fix the PICC line, reconnect, change the caps and successfully flush the line and get it working all before your nurse shows up for the day.
  6. You have ever had your children decorate your IV pole for Christmas.
  7. Your family and friends have renamed you Jekyl and Hyde because your emotions are so labile they never know who they are dealing with.
  8. You have researched so much about Lyme disease and co-infections that you have to verse your Primary Medical doctor on the current testing methods and how to read a Western Blot test.
  9. Your current symptom list is now longer than Santa's Naughty and Nice list.
  10. Exhaustion is so profound that you've fallen asleep in the middle of a speech...that you were delivering.
  11. You've ever put popsicles in the silverware drawer or orange juice in the bathtub.
  12. Pole dancing takes on a whole new meaning for you.
  13. You have 500 sticky notes pasted all over your house so you can remember things.
  14. You run out of sticky notes because you can't remember to buy them when you are at the store.
  15. When people say "you look great" you want to secretely bash them.
  16. Your children can recite your medication regime in it's entirety.
  17. You are unable to use both hands to type and even if you can, the email appears to have been written by a first grader.
  18. Putting on socks exhausts you.
  19. You've put cat food in your cereal bowl.
  20. You've been barfing for days yet still manage to eat 3 meals a day.

Wednesday, November 30, 2011

To Thine Own Self Be True

I saw the Ophthalmologist in Boston on Monday. I was grateful to find him as he specializes in Lyme Vision problems. Might I add that 6 people in the waiting room also had Lyme. I had to sit through the rantings of the crazy lady next to me who insisted that Lyme doctors and all the patients with Lyme were "a cult." I wanted to whip out my MRI and show her my lesions. Actually I wanted to shove the MRI down her throat but instead I sat there and shook my head and bit my lip. It wouldn't have done any good to talk to this loon bin. Of course then she went on to say that she once had Lyme and took the IV antibiotics but they made her nauseous so she stopped. Nausea? Really? I would take a round of nausea any day over this. Then she went on to say that she was then diagnosed with Fibromyalgia and not lyme. Uh-huh. Good luck uninformed person-good luck to you.

 For quite a while I've had bad eye pain, blurred vision and horrible floaters. I haven't been able to drive in several weeks. The Lyme specialist suggested I go to Boston so another day off of work for my husband and a field trip.

I wasn't happy with the outcome. I feel like every time I go to the Doctors it's more bad news. After two hours of painful drops, dilated pupils, bright lights and flashes socked into my eyes, pressure measurements and photos of the back of my eyeballs...

His diagnosis was that I have retinal hemorrhages and small vessel disease. All of this is caused by still active brain lesions despite 5 weeks of IV antibiotics. He gave me the pretty pictures with hand written notes to bring back to my doctors. He also warned me that I would need months of antibiotics considering I had 4 tick illnesses. But I knew that.

I wonder how much less suffering I would have to go through had my doctors, maybe even one doctor just treated me appropriately with antibiotics or believed me when I didn't improved. I wonder if I would have brain lesions or would have lost my vision or the hundred other physical complaints I have. I wonder if I'll ever be able to run with my kids again or just take a walk with the dog or not be profoundly exhausted when I fold laundry.

To Thine Own Self Be True. I should have listened to that voice deep inside me who knew something was very wrong. I shouldn't have let doctors talk me into a diagnosis that I knew wasn't correct.  Lesson learned. To Thy Own Self Be True.

Saturday, November 12, 2011

Lyme Lasagna

Lyme Lasagna. Sounds appetizing doesn't it? My Lyme story gets longer and longer with twists and turns and many layers...like a lasagna. One layer of the story doesn't work without the other.

I've finished week 2 of antibiotics and had my check up with the Specialist. I cannot convey the feeling of general crappiness that I feel. The Nurse Practitioner that I see was quite pleased with my Herx symptoms-herxing means the antibiotics are working. I'm glad someone is enjoying them because in all honesty this is a horrifying process and if I didn't have a really strong support system I don't know how I would get through it.

I'm back in my angry phase. I'm wondering how 9 doctors could have decided to NOT treat me. Nine doctors-not one or two but nine. I'm wondering how after 28 different medication trials for Fibromyalgia that they didn't stop to think that Lyme could still be the culprit. They made that decision to not treat despite what was in front of them. Does anyone else find that shameful? What ever happened to "first do no harm". Their medical training teaches them to worry about the implications of long term antibiotics as harmful and to only rely on medical science for diagnosis I guess.  What ever happened to listening to the patient? And in my case I had 3 positive co-infections documented and the Bartonella is pretty definitive based on symptoms and the classic rash I recently went through. I suppose I'm faking the brain lesions too.

I don't know what kind of function I'll get back after treatment.The NP already told me I was in a for a long haul. It's hard to be positive in the middle of treatment when you see little or no improvement. I know it's only week 2 so all the other lymies out there are telling me to be patient.

Treatment sucks. I'm tied to my house. You either spend your days hooking up your lines, infusing, playing with syringes, IV flushes, alcohol swabs, dragging an IV pole through  your house, figuring out how to shower, managing spells of rage and crying, waiting for medical equipment deliveries, managing the symptoms from the die off, unhooking, more line flushing, waiting for IV nurses and dressing changes, submitting forms to insurance companies, fighting payments (or lack there-of), getting blood drawn, sleeping (or trying to sleep), or just trying to breathe. Put that on top of taking care of kids, home, cooking, everyday life-yeah you get the picture. Treatment is a full time job.

This week I'm dealing with bad headaches and neck pain, and awful chest pain and air hunger. I can't really call it shortness of breath. It's more like when you were a kid and you swam all day and then at the end of the day you tried to take a deep breath but couldn't because your lungs had had enough. It's that feeling that you can't take a deep enough breath. It's Lamaze breathing 24 hours a day. Walking to the end of the hall exhausts me.

My vision is awful with floaters, black veils, photophobia and blurriness. So now I have to see an Ophthalmologist in Boston that specializes in Lyme vision. The NP isn't hopeful that I will get my full vision back considering how long this has been brewing in my central nervous system with no treatment. Thanks so much sucky non-believing doctors. Spend a day in my shoes and see how long you survive or if you think your decision and former beliefs about Lyme were right. Oh and when you change your mind about what Lyme really is, then we'll make you wait 3 years for treatment. How does that sound?

After my initial 30 days of treatment are done, my IV dose of medication will be increased. Double dosing. O' Joy. Yep-herxing through the holidays. The NP let me know that I have to stay on antibiotics until I no longer have active symptoms and then she does pulsed therapy for how ever longer that takes. In the midst of treatment we do some repeat MRI's to see where we are. A very long haul.

I am trying to focus on that fact that I now have a NP that listens to me, that is treating me aggressively with antibiotics and who is hopeful for my future instead of the lyme naysayers. What I say to my former doctors-I'm not really sure and haven't decided. I'm not sure saying anything would help change their mind. Probably not butat the very least-they will have heard me.

Saturday, November 5, 2011

One Week Down

I've had my IV antibiotics for a week now. All I can say is wow. My MD warned me it would get worse before it got better. She wasn't kidding. Initially the antibiotics caused awful chest pain (not new to me just worse with the meds) and very bad shortness of breath. I had some weird virbrating muscle thingy going on (think your cell phone on vibrate all the time).

I'm on day 8 of antibiotics and feeling chained to my house for a couple of reasons. The antibiotics take an hour to come to room temperature and then take an hour (or so) to infuse and I get them twice a day. Depending on my symptoms, I may have to slow it down. So if I can't breathe, it takes longer for the meds to infuse. Not to mention the bouts of chest pain that send me into a total panic which makes it hard to breathe...and well you get the picture.  Last night, oh the headache and neck pain! I can't even call it a headache. It knocked me straight into bed at 7:30 pm and left me in tears and the narcotics didn't even help.

Today was lots of fun (not really) with very bad blurred vision. My computer screen is enlarged to 200%. I'm hoping my vision will clear up as time goes on cause if not I'm screwed. I can't drive right now (be thankful America) and the exhaustion is terrible. The profound exhaustion is beyond words. I nap like an old woman.

Along with this comes the immense guilt and feeling of being a burden to my family. My husband is doing everything and he has never once complained. He's carting the kids to soccer and friends houses, grocery shopping, running errands, working full time and he hooks up my IV each morning and night. The kids have learned to disconnect me, yes even the 7 year old. And I'm completely irritable and cranky. Don't I sound like a joy?

 Don't tell me (or any sick person) to not feel guilty or burdensome. It comes with the territory especially from someone like me who's always done a million different things at once. Yes, I know-slow down, take care of yourself. Please don't tell me that either because I really don't have a choice to do anything but that right now. I need to be responsible for my own decision making and will do what I feel I can handle.

I'm also asking that you not send me your alternative therapies, articles, potions, homeopathic remedies, magnetic bracelets, or suggest high doses of Vitamin C, ginger, tumeric or garlic- because it worked for you. I know you all mean well but it's all I can do to hold myself together at this point and processing one more piece of information isn't what I need to be doing.

The last thing a sick person needs to feel is that they are inadequate in their own decision making. I've had enough decision making taken away from me lately and in the past 3 years. Trust me, I've researched Lyme inside, outside and upside down. My Lyme Specialist is on top of it. I'll get through this.

I am drinking gallons of water with lemon every day. It's helping to detox. I'm eating high protein foods and staying away from yeasts and sugars that feed Lyme. I'm resting and doing all the things I'm supposed to.

Thanks for asking.

Thursday, October 27, 2011

How Is Your Facade?

It's been a long few months. After a recent visit to my Lyme Specialist, she's pretty sure I'm postive for Bartonella as well. The tell tale rash appeared after two months on 3 different antibiotics.

Last month she switched my medication regimen again. Blech. What a tiring mess. I have become the poster child for Lyme Disease. I'd rather be something else.

Today I went and had my PICC line placed.
The staff at the RI Vascular Institute were great. It took longer to take my history and prep my arm for the procedure. They gave me my first dose of medication today as well. All in all-it was pretty easy. My arm is sore tonight and I'm tired but that's about it.The IV nurse will be out tomorrow to change the dressing.

The medications will be twice a day for a month to start. I have a little PTSD thinking about my last round of IV meds and my 10 day hospital stay. I'm hoping it doesn't turn that way this time.

Last Sunday at church I spoke with a woman who had breast cancer. While I don't compare my illness to hers, we share a lot of the same symptoms and frustrations in just trying to get through our day.

I said to her, "How's your facade doing?" She started to laugh knowing that outwardly we look fine and even manage to do it all some days. Inwardly-we look and feel like hell. "My Facade is holding up quite well thank you."

For now-life continues. The kids are still happily homeschooling (most days), we are preparing costumes for Halloween and I chug along.

Saturday, September 3, 2011

The Second Storm

What a week here in Rhode Island. Hurricane Irene hit and knocked power out for a good portion of the State. We had been without power or water since Sunday and had it restored on Wednesday. We were fortunate to be able to shower and do laundry at a friends house. Many others just had power returned today.

Hauling water from the pool to flush toilets, boiling water for washing and cooking on the grill all were difficult for me and I relied on my teenager and husband to help. It's sobering for me to admit that-what I can't physically do anymore.

I noticed my leg muscles wasting away this week-lack of exercise and immobility. My arm muscles don't have any tone either-soft where there used to be definition. I feel like half the person I used to be.

Day 10 of my second month of antibiotics was going fairly well. The small twitches and low grade fevers, shortness of breath and chest pain have become common place. On some rare days it trades places with brain fogginess, deep pain and skin rashes. Somedays they visit all at once. It's amazing to me what you can get used to.

This is me. I'm posting this horrible picture because well-it's where I am. It's not who I am but...that's me. Left eye drooping with a facial rash.

Last night the second storm hit. Not a weather storm or hurricane but the Herx storm. I don't even know what time it was but I got up last night from my bed and had a need to vomit. Thankfully I didn't but I quickly lost my blood pressure yet somehow made it back to my bed. I was disoriented and woke up Larry. I think I scared him from the look on his face. I can only imagine what I looked like.

I was jerking and shaking violently for hours. Welcome to the Herx storm. No introductions needed-I know you well.

Somewhere in the nonstop twitching, I managed to fall asleep I think from pure physical exhaustion. Morning did not treat me well. My muscles are sore and lead like from the constant motion, I have no strength to walk today. My left arm won't stop moving. My right hand can't grasp. Creating this post has taken 5 hours.

After the Herx storm-it's detox day. Tons of water with lemon, ginger tea, Vitamin C doses, rest. It is all I can do today.
That and my 3 times daily cocktail regimen. Life goes on. Storms present themselves and then blow out sea. Some linger and stay a while.

 I will be here a while I think.

Tuesday, August 23, 2011

Life with a Twist of Lyme

I've been reluctant to share some recent details of my Lyme disease but tonight I'm so pissed off and I need a spot to write.

Three years ago I was diagnosed with Erlichiosis and Babesiosis which are tick borne illnesses. Despite the routine dosing of Doxycyline and a week of IV meds which had to be stopped because of an allergic reaction: I've had virtually no treatment.

I've had chronic joint and muscle pain for 3 years, mental fogginess, skin rashes, unexplained fevers and a host of other weird and fleeting symptoms. I have seen 9 doctors, have tried 29 different medications, have had countless bloodwork, MRI's, Lumbar punctures and neuropsych testing. I've had every diagnosis under the sun. MS, "post lyme syndrome", Chronic fatigue syndrome and fibromyalgia to name a few.

Instead of my doctors believing I knew my body and what doesn't work well, they all insisted it was something else. I was told I was malingering. Who uses that word by the way? I was told I was fixated on Lyme by a Neurologist that I worked with for 20 years in Rhode Island-oh let's call him Dr. G.

  I was told I had anxiety and depression. Bite me doctors. Just just bite me. I'd like to use another 4 letter word but children read this blog. You should all be ashamed of yourselves and have your licenses revoked. First do no harm? I guess that only pertains to the diseases you actually believe in. And even with positive lab results to prove my illness-they didn't believe. Bite me.

Just before our family vacation in June, I could barely walk. I was having trouble breathing, I had chest pain and a rash around my eye. My right knee swelled up like...well... a tick. I saw my Rheumatologist who ran another lyme test. I left my cell phone number with the MD to call with any test results but decide to go on the vacation anyway.

All through vacation I felt horrible and came home to 4 phone calls from my Primary and Rheumatologist (did you forget my cell number?). I was now positive for Lyme disease as well and they were restarting the Doxycycline. I had had enough. 3 tick borne illnesses. 3.

I've missed out on my kids soccer games, family time, and events. I can't do grocery shopping and I walk with a cane because of pain and muscle weakness. My vision is blurred sometimes and my limbs go numb making driving difficult. This past Sunday we went to the county fair. It required a lot of walking and in anticipation of this-I borrowed the wheelchair from church. A wheelchair. I'm 42 years old.

 In the past month, I had a repeat MRI, and all of my lyme testing repeated as well as some immune function studies. This past month I have spent my days checking off symptom lists and 2 pages of medication lists. I've taken 3 different antibiotics to fight off this parasite and a total of 26 pills a day. The antibiotics caused chest pain, palpitations, severe joint and muscle pain, skin rashes, shortness of breath, difficulty swallowing and a host of other things. Rather I should say the lyme and co-infections dying off caused this. Does it matter?

Today I saw my Lyme specialist who gave me my test results. My MRI is now showing lesions on my brain that weren't there a year ago. I have brain lesions. Lyme parasitic things in my brain. It's in my central nervous system.

 My CD57 count is low. This is an indicator that my immune system is shot and willl indicate my chances of relapse. I was told I will relapse and how much of an improvement we'll get on the meds we just don't know. She told me to anticipate years of treatment. She also told me that I have acquired another co-infection that will require an additional anti-viral medication. My B12 level is dangerously low so we doubled the dose and she mentioned that with some of the symptoms I am having that I was more than likely positive for Bartonella (another tick borne illness that the lab forget to check )as well. All from one stinking tick bite.

So where I stand now is this.  The plan is to take another month of oral antibiotics in hopes of killing off more lyme (and the other buggers) to help minimize my herx reaction while on IV antibiotics, begin the antiviral medication and increase my B12. In another month I start my IV antibiotics after I have my PICC line placed. In 6 months we repeat the MRI of my brain to check on the lesions. I'm exhausted. I want my damn life back. The life where I could run with my kids, form a coherent sentence, not be on government disability and oh I don't know-pain free maybe. All because no one believed me.

The lyme specialist I see is a Nurse Practitioner who opened her own lyme practice after going undiagnosed with lyme for years. My insurance doesn't cover her and the expense has been over $1000 just in this month. I don't know how we're going to continue to pay for this.

In Rhode Island there are no Lyme Literate doctors available anywhere. Most have a year waiting list or more. I now have 12 friends diagnosed with Lyme all who have had inadequate treatment because doctors refuse to believe us and refuse to believe the dynamics of this disease. Bite us doctors, just bite us.

I write all of this hoping those affected by lyme or who may think they have lyme, continue to pursue treatment. I haven't lost hope-perhaps a bit discouraged and yes, I'm so angry right now. My advice:

  • Listen to your body and your heart.
  • If you've had Lyme or any other co-infection, get treated and you still have symptoms-guess what? You need more treatment.
  • Don't let a doctor convince you that you have Fibromyalgia, Chronic Fatigue syndrome or a psychiatric disorder after lyme.
  • Pursue treatment until someone listens.
  • Read everything, gain knowledge on the testing, the results and how they relate to your symptoms.
  • Screw the CDC and their atrocious Lyme guideline treatment protocol.
  • Keep a symptoms list every single day.
  • Get a support system in place. Your gonna need it. Emotionally, physically and psychologically.
None of this is meant as medical advice. I hope it reaches one person, one doctor or health care professional. I hope they soon listen to the many of us affected by this disease. And if not....they can bite me.


Sunday, August 21, 2011

The County Fair

Every year we attend our local county fair. It's something the whole family looks forward to and we always learn something new. Homeschooling happens everywhere.

 Larry bought a bunch of tickets for the kids to go on rides.
Why are tickets so expensive?

 See? You can tell from his face how thrilled he is.

 Patrick went on the Round Up. While he was on the ride getting his brains spun, we ran into some friends from church.

 The prizes are always so tempting to the kids.

 A sure sign that the kids are growing up is that they want to ride the adult rides. The dinosaur spinning thing just isn't doing it for my kids anymore.

 So, Larry rode the roller coaster with them.

 Because nothing thrills kids more than getting whipped around at 40 miles an hour and watching your cart plunge to the ground only to be lifted again.

 It's hard to catch clear pictures of the carts racing by.

 And it's a county fair so what more would you expect
 than a kiddie pool filled with corn kernels?

 These grist mill stones would look great in my yard.
Anybody have any they want to donate to me?

 Morgan thought the baby cradle sled was awesome.
All I could think of was the episode of Little House on the Prairie where baby Grace is bundled up and Pa is pulling her in one of these contraptions.
 I think he was hunting for turkeys or something.
Did I mention that I love Little House on the Prairie?

 The old iceboxes were so fund to look at although I can't imagine hauling the ice would be that fun. I'm kinda fond of the icemaker in my refrigerator.

 And the Spinner's Club sat and spun fibers from some of the sheep at the fair.

 Daniel Boone made an appearance too.

 Morgan was quite annoyed that I asked her to pose in a dress.
Yes, her face is sideways.

 The food court is always popular. Corn Dogs, Kielbasa, chowder,
 clamcakes, doughboys, oh my!

 The onion blossom was really good.

 The animal barns are my favorite.
 These goats were so cute.

People name their animals funny names.
Shrek and Fiona were the names of two goats.

These were Jakob sheeps that originated from Syria.
They had 4 horns instead of 2.

 The ginormous pig is there every year with her babies.
This year she had 10 babies.
Apparently nursing in public didn't bother her....or anyone else.

 This little beauty is named Piper.
We bought raffle tickets to win her.
How we'd get her home if we really did win, I have no idea.

 Strawberry Shortcake ended our day.
Sadly this year-I'm pretty sure they were canned strawberries.

 Morgan preferred the Cotton Candy.

 Some man at a religious booth gave her a dog ballon sculpture and tried to tell her a rainbow biblical story. Morgan let him know it was also the color of our UU rainbow principles.
 We bought some local honey.

 Tae was facinated with the bees under glass. The bees had started to make honey combs and did a frantic dance around the queen.

 We bought two different kinds of honey. The lighter one was wildflower honey and the darker one came from dark wildflowers. The darker one has some molasses undertones and finishes with the sweet honey flavor.

Can't wait until next year!

Thursday, July 21, 2011

4H Happenings

Our 4H group has been meeting through the summer. This past meeting the kids learned how to make wet felting, dyeing wool and felted soap.
 We dyed the wool with Kool-aid so the whole lawn area smelled delicious. The kids wanted to bring the extra packets home and drink them but we actually don't allow Kool Aid as a drink in the house. The coloring and sugar content react adversly with the kids.

 The kids were each given a foil pan and chose their Kool Aid color.

 While some worked on wool dyeing, others worked on making drop spindles.

 Tae had a little dye spilled on his hair.
He was kinda thrilled he'd have blue hair.

 On a previous field trip to Swiss Valley Foundation, the kids were able to see sheep being sheared. They got to see how dirty the wool was and then at the 4H meeting see how the wool had been washed and cleaned.

 They dye colors were very bright.

 Tae chose orange for his wet felting project.

Morgan had a bright purple.
 If there was black she would have chosen that instead.

 Some just smiled so cutely.

 Once the dye was poured the kids placed the wool in the pan
 and poked it to get it all colored and soaked.

 The grass was the perfect spot to do this activity.

 The kids also learned how to make drop spindles with the wool.

 We dried the dyed wool in the grass. How pretty.
 Except for that bottom one-it kind of looks like lunch gone wrong.

 Karen showed how to wrap and wet the felt around the soap to create a scrubby. After dyeing all that wool it helped to get the kids hands really clean.

 It took quite a while to get the wool felted.
The kids had great fun getting all soapy.

 Karen's hands turned bright pink from the dye.

 Once the wool was wrapped around the soap it was placed in nylon. The kids dipped it in water and scrubbed away to felt the wool and join the fibers.

Tae really was having fun here.
 His face doesn't show it but he loved this project.

Our next 4H meeting will be a trip to an Alpaca farm.
The kids (and me too!) can't wait.