Tuesday, November 20, 2012

Don't Homeschool

You read the title correctly. Don't homeschool. I can no longer advocate that you homeschool...at least in the state of Rhode Island. It's too hard, too stressful, too upsetting.

It has nothing to do with my kids or the teaching or the fabulous homeschool group I run. Instead, all of those joys have been stepped on by perceived authority and power from school committees. 

This will be the first in a series of articles on homeschooling. I hope you repost and repost and repost. 

In Rhode Island, homeschoolers report at the local level, meaning each district. And we have 32 districts in the small state. Yes, that is correct, 32. Most districts approve us without difficulty, we submit the required standard letter of intent when we begin homeschooling and wait for our approval letter (if we even receive one as some districts don't even send that). Homeschoolers follow the law each year-in some respects it's pretty easy. The elephant in the room however is the State Statutes which are vague to administrators and very clear to homeschoolers. And to a certain extent, the Department of Education in RI leaves it up to the individual districts to create their own "application" for homeschooling. We'll discuss "application" in the next post.

A post on the ins and outs of state statutes would have to be a series of posts because of the legalities and the explanation needed. For now, let's focus on the homeschoolers. This year in Rhode Island has been a disaster. I have written at least 18 certified letters to school committees speaking out against unlawful policy. I have attend 6 meetings with school superintendents, I have met with homeschoolers regarding unlawful policy too many times to count and have sent 397 emails (yes, I counted them) about policy. 

Let's start with the difficulties and incidents this year. And I name these districts as all of this information is a matter of public knowledge and access.  CHARIHO school district denied a RI homeschooler based on her not providing a grade level or age. That is correct- a grade level or age. They also approved her other child without this information so the inconsistencies were vast. When the homeschooler did submit an age for her child, CHARIHO cut off all contact, did not answer emails or phone calls, and mixed up her 2 children's approvals in committee meetings. They gave false information about this family at committee meetings and denied her homeschool request. Very quickly after her denial letter was sent, a truant officer came to her home, no paperwork, no nothing and promptly filed a truancy petition in family court. This family sought legal counsel and the matter was quickly dropped. The family was finally approved at the next committee meeting in executive session with no apologies, no explanation, no nothing. The parents then returned to the public forum and spoke out in front of 200 people on these mis-steps so that their voice would be heard in hopes that other districts would not follow suit.

Then there was West Warwick where over 30 (or so) families applications were held for months on end as administrators sent letter after letter requesting more information. Each time homeschoolers refused and still more letters came. Again, parents met with administrators, spoke out at the school committee meetings, sought legal counsel and eventually all the homeschoolers were approved.

A Northern district has recently sent a truant officer (twice) to a homeschoolers home after she refused to submit information to them that is not required by law. We are awaiting outcome. 

And then there is the current district we are working in. We spent months with officials speaking out against an unlawful policy. Even pointed out Commissioner of Education rulings on areas of their policy that were beyond the scope of the law. We were hopeful when we were invited to rewrite the policy. And then families homeschool approvals were denied and contact was cut off and we received word that they decided not to change to the policy based on our suggestions. Wow. Just wow.

Where does that leave us. Hmmm-see the next post.

In the mean time, here are some things for administrators and school committees members to think about.

1) School Committees report to the parents. Not vice versa. Let me say that again, School committees report TO THE PARENTS. You are elected officials. That means it is your obligation to follow the law just like homeschoolers are required to. 
2) It is your job to communicate with the public. That means you need to answer your emails, return phone calls and send out notices. You need to sit at a table and really hear the concerns in front of you. 
3) There are 1200 homeschoolers in the state of Rhode Island. If you don't play fair, your district will be noted as such all over the message boards and the media will hear about it. The homeschool network is very strong in RI. What happens in one district is quickly heard throughout the state. There is strength in our numbers.
4) We follow the law, you must too.  You cannot extend Statutes to suit your needs. You cannot go against Commissioner of Education rulings. It's illegal. 
5) Homeschool is not public school. We do not fit in your boxes of attendance and curriculum and learning. 
6) I choose to homeschool because it is my legal right to do so and because it is the best choice for my children. That does not make us "against" public schooling. It makes us committed to education and to our families. Should that not be supported?
7) Sharing your stories of the homeless, unemployed, illiterate, noncompliant homeschoolers that you know really does us no good. While we hear your concern, for as many stories as you tell us about slacker homeschoolers, I could give you 3 more where public school has failed our children, not ALL children, but OUR children. And some choose to homeschool because it is simply one of the many options available to them. The reasons are as vast as the ocean wide. Know the difference. Please leave your personal stories at home and focus on what is required by law. 
8) Don't think for one milli-second that just because you make a policy that we are obligated to follow it. This is perceived authority and power.  Homeschool IS mainstream now. The days of homeschoolers caving in to school committees are long gone.
9) Don't think for one milli-second that we are simply going to accept your unlawful policy as the final say. Homeschoolers know their rights and we fight you every step of the way to maintain and preserve those rights. 
10) Build bridges, not walls. Homeschoolers are not your enemy. Work with us and recognize the commitment that homeschoolers have to their children and to their community.

Next post: Don't Put Me in a Box.

Tuesday, June 5, 2012

Repurposed Cabinet

We desperately needed more storage in our home. I had this old white beat up jelly cabinet in my basement. I love it. My husband hates it.

 I wanted to do something to spruce it up and since I've been spending so much time on Pinterest, I was inspired to repurpose it.

 I had some lovely fabric with a farm theme. It was easy enough to measure the panels and cut them out.

 A hefty dose of Mod-Podge was all it took to stick the fabric to the panels. I wasn't so much worried about the edges since they would be covered up with trim.
 The panels went up very quickly. Note to self: Always check the direction of the pattern BEFORE gluing the fabric down.

 Before I knew it, all four panels were up and the cabinet was looking quite good.
 I trimmed out each panel with some antique black ribbon and my trusty hot glue gun.
And Voila! A new old cabinet that looks pretty darn good if I do say so myself. I just need to get some new knobs to finish it and have a beautiful tassel to hang from it. The whole project took me about an hour and a half. And guess what? My husband likes it!

Thursday, January 12, 2012

Things I Miss

In being sick for such a long time there are some things I discovered. I miss things. Not physical things but life things. Here are the things I'm missing after 3 years of dealing with Lyme and co-infections.
  1. Making my own decisions. Oh sure I make hundreds of small decisions a day but in reality I've had much taken away. I had no choice but to give up my nursing career of almost 20 years. I miss the adrenaline rush and I miss helping people. Decisions should be mine.
  2. I've had no real choice in my treatment plan. Even now, my LLMD tells me what she thinks is best, I may get a choice on which path but reality is if I don't do this, this disease might kill me.
  3. What I feel I can and can't do on any given day. Somedays I feel well enough to venture to a store. Other days, putting on socks exhausts me. I don't get to decide that. My body does. I'm merely there to cooperate with it or suffer the consequences of poor self care.
  4. Keeping a facade. Lyme patients have to have a facade. In a sense it keeps me sane because for a few moments I get to be normal and like everyone else. People look at me and say, "You don't look sick." Sometimes I am grateful for that. If I sit and think about the magnitude of this disease and what it's done to my family, life and relationships I can get very depressed. But my kids and husband need me and if I spend every waking moment crying I'm not much use to them. They do see me cry and struggle and see me at my most raw moments. But there is still life to live. My facade is holding up just fine thank you.
  5. I miss thinking. Lyme fog is awful. Cognition is non existent at times. I live my life by sticky notes and wonder some days if my thoughts will make it from my brain, down my arms and onto the keyboard or paper. If it does-will it make sense? What did I forget today? I'm still volunteering at church and in the homeschool community (by computer mostly) because it keeps my brain active and people still value my opinions (I hope). It makes me feel like I'm still contributing in some way and that my brain still has a few active cells left.
  6. Playing. I miss playing ball and running (any physical activity really) with my kids and being able to go see their activities.
  7. Traveling. Anywhere.
  8. Being spontaneous. Not that I was every really spontaneous. Those that know me know I am the well planned out girl. But sometimes it would be nice to just get in the car and go without having to worry about when the next dose of medication is due or to take the kids out for icecream instead of knowing that the trip will be too much for me. With being spontaneous comes planning ahead. I can't do that either because I never know how I will feel.
  9. I miss my hobbies. Gardening especially. Digging in the dirt is very cathartic and meditative for me. Growing the food is providing something for my family.
  10. I miss being trusted. Trusted to know that I was/am ill, trusted by my doctors, trusted by family and friends to know that I am making the right decisions for me at this very moment.
At this moment, it's all I can do.

Sunday, January 1, 2012

Lyme Update

I thought I would post this photo of my what my Friday morning routine looks like when the IV nurse comes to draw blood and change my PICC line dressing.

I'm holding my own for now. I saw the Lyme specialist on Friday. We (she) is doubling my dose of IV Doxycycline and adding in 2 more oral antibiotics. Since I had such a bad Herx reaction a year ago on IV Rocephin she is taking it slow. We did a few months of oral antibiotics, eased into the IV and now we pull out the big guns. I learned my brain lesions were in my frontal lobe. Well that explains a lot. She told me to prepare for some days of suckiness.

A few things have improved. My pain level is a bit better, I'm walking a bit better and I don't get chest pain and palpitations 24 hours a day now. I haven't had a Bartonella/Lyme rash in over 2 weeks. Small blessings but at least I know the meds are starting to work. And my kidneys and liver are so far holding their own and not protesting too much from all the meds so I guess that's good too. How frustrating though that it's been 5 months of various treatments and the meds are JUST starting to work.

Things that have worsened are my headaches and I'm having tremendous difficulty with processing, word finding difficulty and following conversation. I forget words and transpose letters in typing. Yesterday I could not make a coherent sentence. It was kind of frightening in a "I'm having a stroke" sort of way.  My typing skills have also deteriorated. Blog posting is painful and tiring. My vision has also significantly worsened, much worse after my IV dosing. My brain feels swollen.

 It perhaps is.

I'm tired.

 It's a tired I can't explain to people other than to say, "Run a marathon...then do it again as soon as you finish."

My family is feeling the stress of doing what I cannot. Laundry, chores, running errands, my crankiness and mood swings. It's a life change for all of us. I'm grateful for them.

2012 has arrived. I am fighting this. I have to. It's taken up too much of my time and my life. I will endure what ever suckiness it feeds to me. I am stronger than this. I will be stronger than this.


Brussels Sprouts delux

This is my favorite recipe for Brussels Sprouts. Even if you hate sprouts you will love this recipe.
  • 1 large stalk of Brussels Sprouts or a frozen bag will do.
  • 1/2 pound of bacon
  • Salt and pepper
  • Chopped garlic
  • 1/4 head of shredded red cabbage
  • 2 lemons

 This Christmas I found these great Brussels still on the stalk.

 To prepare the Sprouts, snap off each head and place in a bowl. Give the rest of the leaves and stalks to the chickens. They need a Christmas treat too.

 Give them a good wash and peel off the outside waxy and damaged leaves.

 Shred the cabbage and cook it with the bacon in a cast iron pan. Seriously, invest in a good cast iron pan because it makes all the difference in the world.

 Cut off the end core of the Sprouts and discard.

 Add the garlic to the pan and continue to cook until the bacon is crispy.

 Really crispy.
I mean I guess if you were vegetarian you could omit the bacon...eh nevermind.
 Don't make this if you are vegetarian.

 Score a cross hatch in the core end of the sprouts. Don't cut all the way through or you sprouts will fall apart. The scoring helps them cook through.

 Add the sprouts to the bacon, cabbage, garlic mixture in the cast iron pan.
Cook until bright green.
Sidenote: if your mother used to cook sprouts, broccoli and cabbage until it was gray in color and mushy please note that this is gross and not the correct color.
 Green vegetables should still be bright green after cooking. You will need to cook the sprouts for about 10 minutes on the stove top.

 Add 1/4 cup of water and a lid. This will help steam the sprouts a bit.

 Place the whole pan of sprouts in the oven at 350 degrees for 10 minutes.
Pull them out and they are all toasty roasty good.
I could have let mine roast a bit more but I actually like them a bit harder and greener.

When you take them out of the oven-give them a squirt of the juice of one whole lemon. They need the lemon to help with a the bit of bitterness in the sprouts.
Give each person a small wedge of lemon to put on their sprouts as well. Hot sprouts absorb the lemon juice that you added and they will need a bit more.

My kids devoured these.
You will too!


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.