Sorry. I don’t accept death sentences on Mondays. Please call back.

Yesterday, starting at 8:30am, was a combination of phone conference and migraine day. One leading into the other. My first phone call was, for the most part, the only pleasant one all day; a client letting me know he was putting his manuscript and payment in the mail, always a good thing. He is always wonderful to talk to so it was a good start. Sadly this was not the theme for the day as a phone conference with a disability attorney did not turn out to be good news.

“There is nothing I can do to help you.” was the general consensus. I am under 50, not able to be vocationally rehabbed as I am a working freelancer, and the one therapist I need is considered alternative medicine (which I knew).

Several years ago I had gone to Shands at University of Florida after a client of mine recognized that I had Lymph-edema. A hair dresser, he had referred me to one of his clients, Vanessa, who specialized in manual lymph drainage; basically a (painful) form of therapy where the lymph system is manipulated via massage. Instead of calling her, I went to Shands to seek verification first and, ironically, they referred me to the same person. Shands had wanted me to come to them two hours a day, 7 days a week, for therapy which I was unable to do at the time, so I asked for a referral in our area. Shands is an hour north and we had one car at the time as well as a small child. They referred me to Vanessa who, I was told, was reputed to be one of the best in the Southeast for MLD and Shands sent their worst patients to her. (Comforting thought.) Vanessa was a Godsend and I wish I had been able to afford to continue seeing her.

Being self-pay was/is difficult, as I know it is for a lot of people. The health care system here is broken, not a new topic. My next step was to call Shands, which I did, and again not good news.

“We don’t accept self-pay from Marion County.” Even with cash-in-hand to pay IN FULL they refused to allow me to make an appointment. In my opinion ridiculous but I am sure there is some “logical” reason for it outside my understanding. So. Square one. Fundraiser time.

Vanessa is $70.00 per visit, IF she can help me. It has been four years since I have seen her and I have not been wrapping during that time. I went through a severe depression where the only thing getting me out of bed was my daughter. After that I threw myself into my art for a period of time. Both were blessings. My daughter is my “bestest friend”, as we say, and my partner in art.

If Vanessa can see me, I hope to find a way to do five (5) times per week, ideally. Inside of a month I could be back down to where I could actually exercise, be in compression stockings, and fighting strong to maintain which is something I will be doing for the rest of my life. Doing five sessions a week would accelerate the results and help me get through it in the off times with my sanity intact. (I know, I know, I had to have had it first.)

I am thankful to be blessed with a good support group, something I didn’t utilize as fully as I could have before. Val, my incredibly supportive boyfriend, is learning the massage necessary for me to maintain when I am not with Vanessa. My daughter is ready and willing to help me untangle and roll miles of compression bandages, a process that is repeated several times a day. And friends who aren’t afraid to kick me in the butt or head, whichever works better, sometimes both.

This time around I am fueled by anger and disgust for a health care system that looks down on alternative medicine instead of embracing it for its benefits and for doctor’s that rest on their routines and no longer research causes. My lymphatic system shut down during my pregnancy and I spent five years going from doctor to doctor. None of them knew what I had, continuing to treat me for “water retention” and, in the meantime, making my condition worse.

Lesson learned. I am on my own now. Thank God for hairdressers that pay attention.

Let the bake sales, eBay auctions, and Etsy stock begin!

Things to do when you are stuck in bed:

1. Be thankful you have a laptop and hook it up.

2. Blog.

Ysa and I are both down for the count today. I’ve got the brunt of it this time thankfully; I can deal with it if it is me, I don’t like her being sick. She is understandably bored, her mother being the stick in the mud she is currently, so we’ve made beds on the two couches in the living room. I would happily be in bed buried under four blankets but there is no one here to help, both the guys are at work, and I cannot/will not leave her to fend for herself.

Drawing supplies, stuffed animals, and DVDs will keep us company today. Right now she is drawing me pictures to make me feel better and being very sweet. Hopefully she will nap soon so I can too. It is bad enough that I am sick but I cannot even work in the studio; she’s been begging me to do art with her. If I sit up for too long I start coughing and I am exhausted from that already. Laying flat is just as bad though so I am in “slightly elevated but reclining” mode today. Hoping this improves soon, may be going back to the doctors. bleh Will find something we can do together, maybe coloring pages.



Feeling very much like this today.

Growing up this was a normal thing for me. My immune system was fairly weak so I spent weeks, even months, at home while my mother got my school work so I could keep up. I’ve had Mono three times (age 3, age 9, age 15), Scarlet Fever, Chicken Pox, I think Measles, not sure about Mumps, plus various bouts of bronchial goodness. It wasn’t until about 15 years ago, while dating a martial artist, that I was able to get things under control. It was then that I got into Chinese medicine, herbalism notably, and it strengthened my immunities. After being on a consistent regimen for a couple of weeks I noticed a huge difference. From then on I was only sick once a year, usually when the weather changed at the beginning of winter. I’d gotten out of it since moving to Ocala because the shop I bought supplies at was in Orlando. I will be renewing that relationship as soon as possible I think.

3. Catch up on email.

Glanced. Scanned for client and list stuff. Total there are about 1300 there. Posted that I was alive but sick to the lists. I’ll look at it tomorrow when I am coherent.

4. Stream music from Pandora.

Music soothes and inspires. It is one of my most cherished muses and is my bedfellow today. I am very eclectic in all things and my musical tastes show that if you look through my profile.

I have been wanting to take violin again, it has been years since I have even held one, but lately I have been drawn to cello so that is what I am looking into getting. Its sound moves and resonates in me.

5. Sketch in your journal.

Note: This only works if you are feeling well.

Want to sketch, would love to sketch, I should, I have ideas running around in my head, don’t feel like it. bleh

6. Drink your weight in Tropical Orange Fusion.

I love this stuff, can’t get enough of it. That and cheddar Goldfish crackers are my favorite thing right now. Craving sushi, could definitely use the wasabi to clear this out of my head. Need wasabi goodness and sushi care packages.

7. Browse through your Amazon wish list, decide what to read next.

I love books. I adore words. I love playing with them. I’m a writer at heart, see :::points::: right there next to the little label that says “Artsy Fart”. Hoping this time next year that my novel will be up there on that list. Three other books of mine this year will be.

8. Research ArtSci projects for the SCA.

I’ve gotten back into the SCA after an eight year hiatus and I am looking forward to it. There are some fantastic people in the local shire now. My family is coming with me – Logan for heavy weapons, Val for ArtSci, and Ysa wants to be a knight. :) She will be pretty well rounded, helping me in the feast hall, doing ArtSci, singing at Bardic. I might even get fencing gear again and teach her; I fenced for seven years prior to joining the SCA in 1991, never did it in the Society. I have a lot of happy memories from my Scadian days, looking forward to making more.

9. Make a to do list…that is several pages long.

I have a lot to catch up on.


One of my older doodle schedules.

10. Meander aimlessly on Flickr a little and journal ideas in your head, hoping you remember them later.

11. Realize you have gone through almost another box of Puffs since this morning.

12. Remember why you like Sarah Brightman (sometimes).

Both music and the creativity I see globally online and off are constant sources of inspiration to me. To see everyday life put forth in a creative manner, the simple things, makes me appreciate what I have even more. It is the small moments that we should treasure.

…hopefully that made sense, if not I’ll translate when I am not taking cold medicine.

13. Do a meme you found on a friend’s blog.


You Are a Total Brainiac


You’re amazingly brilliant. Some would even say genius.
You’re curious, thoughtful, analytical, and confident.

You take on difficult subjects because you want to… not because you have to.
No field of knowledge is too complicated or intimidating for you.

You’ve got the brains to do anything you want.
It’s possible you end up doing everything you want.

And always good to know…


You Are 4% Spoiled


You are definitely not spoiled. You’ve worked hard for what you have.
Down to earth and grounded, you don’t need a lot to make you happy.

…the only thing I checked was that I was a picky eater. LOL I am assuming that meant I wouldn’t eat something that looked gross or spoiled. LOL

14. Find nifty quotes to share with friends or add to your own collection.

I collect quotes. I have an inch thick, large spiral-bound notebook full of them.

“If you have much, give of your wealth
If you have little, give of your heart”
– Arab proverb

Quotes inspire me and there are some great places online to collect them from.

15. Blog without obligation.

I ran across Tiffini’s Tartx blog recently, particularily her Blogging Without Obligation post, and felt an overwhelming sense of relief.

Blogging without obligation frees you up to post the content that you love, not the content you think everyone is expecting from you on a set schedule. It lets you allow yourself to be more creatively wordy and not stress out over the fact that life won’t allow you to do it when you want to. Read her post, it’s fun.

(I found her through another blog but cold medicine isn’t conducive to keeping track of breadcrumbs, sorry. If I can backtrack it I will post a profuse thank you.)

16. Pass out as soon as your daughter decides to take a nap.

Enough said…

Things to do when you are stuck in bed:

1. Be thankful you have a laptop and hook it up.

2. Blog.

Ysa and I are both down for the count today. I’ve got the brunt of it this time thankfully; I can deal with it if it is me, I don’t like her being sick. She is understandably bored, her mother being the stick in the mud she is currently, so we’ve made beds on the two couches in the living room. I would happily be in bed buried under four blankets but there is no one here to help, both the guys are at work, and I cannot/will not leave her to fend for herself.

Drawing supplies, stuffed animals, and DVDs will keep us company today. Right now she is drawing me pictures to make me feel better and being very sweet. Hopefully she will nap soon so I can too. It is bad enough that I am sick but I cannot even work in the studio; she’s been begging me to do art with her. If I sit up for too long I start coughing and I am exhausted from that already. Laying flat is just as bad though so I am in “slightly elevated but reclining” mode today. Hoping this improves soon, may be going back to the doctors. bleh Will find something we can do together, maybe coloring pages.



Feeling very much like this today.

Growing up this was a normal thing for me. My immune system was fairly weak so I spent weeks, even months, at home while my mother got my school work so I could keep up. I’ve had Mono three times (age 3, age 9, age 15), Scarlet Fever, Chicken Pox, I think Measles, not sure about Mumps, plus various bouts of bronchial goodness. It wasn’t until about 15 years ago, while dating a martial artist, that I was able to get things under control. It was then that I got into Chinese medicine, herbalism notably, and it strengthened my immunities. After being on a consistent regimen for a couple of weeks I noticed a huge difference. From then on I was only sick once a year, usually when the weather changed at the beginning of winter. I’d gotten out of it since moving to Ocala because the shop I bought supplies at was in Orlando. I will be renewing that relationship as soon as possible I think.

3. Catch up on email.

Glanced. Scanned for client and list stuff. Total there are about 1300 there. Posted that I was alive but sick to the lists. I’ll look at it tomorrow when I am coherent.

4. Stream music from Pandora.

Music soothes and inspires. It is one of my most cherished muses and is my bedfellow today. I am very eclectic in all things and my musical tastes show that if you look through my profile.

I have been wanting to take violin again, it has been years since I have even held one, but lately I have been drawn to cello so that is what I am looking into getting. Its sound moves and resonates in me.

5. Sketch in your journal.

Note: This only works if you are feeling well.

Want to sketch, would love to sketch, I should, I have ideas running around in my head, don’t feel like it. bleh

6. Drink your weight in Tropical Orange Fusion.

I love this stuff, can’t get enough of it. That and cheddar Goldfish crackers are my favorite thing right now. Craving sushi, could definitely use the wasabi to clear this out of my head. Need wasabi goodness and sushi care packages.

7. Browse through your Amazon wish list, decide what to read next.

I love books. I adore words. I love playing with them. I’m a writer at heart, see :::points::: right there next to the little label that says “Artsy Fart”. Hoping this time next year that my novel will be up there on that list. Three other books of mine this year will be.

8. Research ArtSci projects for the SCA.

I’ve gotten back into the SCA after an eight year hiatus and I am looking forward to it. There are some fantastic people in the local shire now. My family is coming with me – Logan for heavy weapons, Val for ArtSci, and Ysa wants to be a knight. :) She will be pretty well rounded, helping me in the feast hall, doing ArtSci, singing at Bardic. I might even get fencing gear again and teach her; I fenced for seven years prior to joining the SCA in 1991, never did it in the Society. I have a lot of happy memories from my Scadian days, looking forward to making more.

9. Make a to do list…that is several pages long.

I have a lot to catch up on.


One of my older doodle schedules.

10. Meander aimlessly on Flickr a little and journal ideas in your head, hoping you remember them later.

11. Realize you have gone through almost another box of Puffs since this morning.

12. Remember why you like Sarah Brightman (sometimes).

Both music and the creativity I see globally online and off are constant sources of inspiration to me. To see everyday life put forth in a creative manner, the simple things, makes me appreciate what I have even more. It is the small moments that we should treasure.

…hopefully that made sense, if not I’ll translate when I am not taking cold medicine.

13. Do a meme you found on a friend’s blog.


You Are a Total Brainiac


You’re amazingly brilliant. Some would even say genius.
You’re curious, thoughtful, analytical, and confident.

You take on difficult subjects because you want to… not because you have to.
No field of knowledge is too complicated or intimidating for you.

You’ve got the brains to do anything you want.
It’s possible you end up doing everything you want.

And always good to know…


You Are 4% Spoiled


You are definitely not spoiled. You’ve worked hard for what you have.
Down to earth and grounded, you don’t need a lot to make you happy.

…the only thing I checked was that I was a picky eater. LOL I am assuming that meant I wouldn’t eat something that looked gross or spoiled. LOL

14. Find nifty quotes to share with friends or add to your own collection.

I collect quotes. I have an inch thick, large spiral-bound notebook full of them.

“If you have much, give of your wealth
If you have little, give of your heart”
– Arab proverb

Quotes inspire me and there are some great places online to collect them from.

15. Blog without obligation.

I ran across Tiffini’s Tartx blog recently, particularily her Blogging Without Obligation post, and felt an overwhelming sense of relief.

Blogging without obligation frees you up to post the content that you love, not the content you think everyone is expecting from you on a set schedule. It lets you allow yourself to be more creatively wordy and not stress out over the fact that life won’t allow you to do it when you want to. Read her post, it’s fun.

(I found her through another blog but cold medicine isn’t conducive to keeping track of breadcrumbs, sorry. If I can backtrack it I will post a profuse thank you.)

16. Pass out as soon as your daughter decides to take a nap.

Enough said…

We went for a walk last night…

BEFORE

Well, today is the day. Ysa and I went out to breakfast this morning, made a bank deposit so I could make my October school loan payment, then went grocery shopping. Coming home I set her up with a movie, The Last Unicorn because we have to return it to Blockbuster soon and she loves it. Need I mention she has watched it about 5 times already. hehe

Working on flyers for Art for Cures, finishing up some things for the local museum, and doing laundry. L is coming home early so he can play with Ysa and I will be heading out a bit later to pick up V from work and go to the downtown festivities for Light the Night that start at 5:30pm. The walk won’t actually start till 7:30pm.

Time for New Shoes

I am looking forward to tonight but wish I had a decent pair of sneakers. It has been so long since I have worn anything more than slip-on sandals due to the swelling in my feet that I don’t have any shoes that fit me. I also have part of a burr embedded in the pad of my right foot near my little toe so it should prove interesting. LOL Since there is a chance it may rain tonight I am not going to bandage like I wanted to (and should). The bandages are expensive and I don’t want to chance ruining them. I should be ok though, will have good company and can go at my own pace in sandals, comfy pants and a shirt brandishing my Art for Cures pins and flyers.

AFTER

Home! I am sore and tired but we are both well and enjoyed ourselves tonight. We lucked out and found a parking space relatively close so we didn’t have to walk an extra 2 miles just to get to event. :::happy dance::: We hit the registration table first, they looked up our names and had us both sign waivers. We went to a couple of booths to collect our balloons – red for participants, gold for walking in memory of someone, white for survivors – and received two red and one gold.

We gifted both of the red ones to Ysa, along with the flowers, when we got home. She was thrilled that we thought of her and that the balloons light up. Good thing the battery packs can be reused.

A new Starbucks had been opened on one corner of the square. It is located in one of my favorite buildings and is being run by one of our favorite managers, Steve, as well. Steve used to run the one we hung out in all the time and he invited me to come set up and do a live installation. Basically he would provide the space and I would set up a table where I can sit and art for a while, talk to people about what I do and just veg. How cool is that? Told him I’d be calling him this week. May hang some retail pieces in there as well for Art for Cures and see if they sell. I think it will be a good opportunity to maybe take pieces/projects I am doing the finishing touches on and hand out Art for Cures flyers and my own media.

For now he let me hang one of the Art for Cures flyers on the community board. Made it seem more “real” to me; way cool, we’re official now! LOL

The amounts that had been donated online were next to our names when we signed in – Val’s total being 105.00 and mine being 65.00 – and I came home to a new total of 100.00 on mine, a friend having donated on my behalf while I was out walking. It was a very nice surprise to come home to. WOOT

Val was given a gold balloon and presented a white carnation because of the loss of his father.

I picked up an extra white carnation from a large bucket full of them and brought it home for my girl. She had been worried about me going and was sad that she couldn’t go with me. I am planning to take her on the next one and will be showing off Art for Cures shirts, etc by the next one. Already designing things having been inspired on the walk. I will be setting up a Cafe Press shop for members so we can spread the word!

Thank you to everyone who supported us, donations not withstanding. The outpouring helped carry us through and kept me going.

We went for a walk last night…

BEFORE

Well, today is the day. Ysa and I went out to breakfast this morning, made a bank deposit so I could make my October school loan payment, then went grocery shopping. Coming home I set her up with a movie, The Last Unicorn because we have to return it to Blockbuster soon and she loves it. Need I mention she has watched it about 5 times already. hehe

Working on flyers for Art for Cures, finishing up some things for the local museum, and doing laundry. L is coming home early so he can play with Ysa and I will be heading out a bit later to pick up V from work and go to the downtown festivities for Light the Night that start at 5:30pm. The walk won’t actually start till 7:30pm.

Time for New Shoes

I am looking forward to tonight but wish I had a decent pair of sneakers. It has been so long since I have worn anything more than slip-on sandals due to the swelling in my feet that I don’t have any shoes that fit me. I also have part of a burr embedded in the pad of my right foot near my little toe so it should prove interesting. LOL Since there is a chance it may rain tonight I am not going to bandage like I wanted to (and should). The bandages are expensive and I don’t want to chance ruining them. I should be ok though, will have good company and can go at my own pace in sandals, comfy pants and a shirt brandishing my Art for Cures pins and flyers.

AFTER

Home! I am sore and tired but we are both well and enjoyed ourselves tonight. We lucked out and found a parking space relatively close so we didn’t have to walk an extra 2 miles just to get to event. :::happy dance::: We hit the registration table first, they looked up our names and had us both sign waivers. We went to a couple of booths to collect our balloons – red for participants, gold for walking in memory of someone, white for survivors – and received two red and one gold.

We gifted both of the red ones to Ysa, along with the flowers, when we got home. She was thrilled that we thought of her and that the balloons light up. Good thing the battery packs can be reused.

A new Starbucks had been opened on one corner of the square. It is located in one of my favorite buildings and is being run by one of our favorite managers, Steve, as well. Steve used to run the one we hung out in all the time and he invited me to come set up and do a live installation. Basically he would provide the space and I would set up a table where I can sit and art for a while, talk to people about what I do and just veg. How cool is that? Told him I’d be calling him this week. May hang some retail pieces in there as well for Art for Cures and see if they sell. I think it will be a good opportunity to maybe take pieces/projects I am doing the finishing touches on and hand out Art for Cures flyers and my own media.

For now he let me hang one of the Art for Cures flyers on the community board. Made it seem more “real” to me; way cool, we’re official now! LOL

The amounts that had been donated online were next to our names when we signed in – Val’s total being 105.00 and mine being 65.00 – and I came home to a new total of 100.00 on mine, a friend having donated on my behalf while I was out walking. It was a very nice surprise to come home to. WOOT

Val was given a gold balloon and presented a white carnation because of the loss of his father.

I picked up an extra white carnation from a large bucket full of them and brought it home for my girl. She had been worried about me going and was sad that she couldn’t go with me. I am planning to take her on the next one and will be showing off Art for Cures shirts, etc by the next one. Already designing things having been inspired on the walk. I will be setting up a Cafe Press shop for members so we can spread the word!

Thank you to everyone who supported us, donations not withstanding. The outpouring helped carry us through and kept me going.

NEWS FLASH | “Mummy Mommy” seen walking at night!

Val (my boyfriend) and I are walking in memory of his father THIS Thursday night for the Leukemia & Lymphoma Society. I just found out about the walk and have been gearing up as fast as I can. Val lost his father to a nine year battle with Lymphocytic Leukemia on August 27th of this year, only a couple of months ago. We are looking for sponsors/donations BUT we could use some help spreading the word as well.

You can find out more on my page and on Val’s page.

I have never gotten the chance to do any of the charity walks so this will be our first. I have severe Lymphedema so I am going to be wrapped to the knees or higher on both legs. I’m calling it my early Halloween costume, hence the “mummy walk”. hehe

My stylish socks :P

I am busy making pins for us and flyers for Art for Cures and hope to garner some interest for the upcoming auctions. I am putting the auction pieces together this week for the Leukemia & Lymphoma Society benefit. How ironic that I would find this Light the Night walk benefiting the same charity. Talk about good timing. hehe

If you could pass the word around, even if you can’t donate, I would be really grateful. Check the site too because there are walks going on all over the country and I know they would love more volunteers and walkers!

Thank you for taking the time to read this and for your help!

Namaste…

Health & Wellness Update

Some of you have asked me for an update. I am posting this as I know there are a few people who don’t know what has been going on till recently and have asked. Here’s the update…

These are actually kind of a “second stage” to the compression bandages I’ve been doing for a couple months now. Prior to this I was bandaged to my hip on both legs and walking very much like a mummy. hehe Now I just walk somewhat like a penguin. :P

My stylish socks :P

I have to be in either compression stockings or bandaging 24/7 for the rest of my life. The bandages have practically become an extension of me in some ways. They are such a commonplace thing in my house now, like a dog or a cat. Thankfully though I don’t have to feed them! hehe

Why?

I had a sweet little baby girl in 2001, who is fast growing weedlike and beautiful, and it was a little too taxing on my body. My lymphatic system shut down and I got stuck with about 70 pounds of excess fluid. There is no “cure” and this condition actually affects about 1 in every 1,000 pregnancies according to my research. For the past four years I had been to several doctors, tried everything including homeopathy, and found no relief or explanation…until three months ago.

I was sketching out a wall mural and having my hair done by one of my clients, a wonderful guy named Brian with a killer salon called Evolutions here locally. Brian and I talked about my health and he “diagnosed” me with Lymphatic Edema. He’d seen the condition before and knew of a massage therapist who specialized in working with Lymphedema cases. So I did some research.

I went to Shands at the University of Florida a week later for an eval, and they confirmed what he had said. Lymphatic Edema. I was told I would need to come in to the Women’s Wellness Clinic there at Shands 7 days a week for therapy. Gainesville being an hour from home, having one car for the household and no babysitter that I could use that often, there was no way I could do it. Knowing what it was, though, was more of a relief than I can express. Exercise, which most of the doctor’s I’d seen had recommended, only made it worse, sometimes to the point of completely immobilizing me the next day.

After four years of frustration and doctor’s giving me the wrong information, I finally knew what was wrong with me. Trust me, do your homework and never take the first opinion you are given if you are ill and intuition tells you something else is wrong. I asked if there was anyone local to me and they mentioned the same woman Brian had. BINGO!

Apparently my therapist is one of the best in her field so I am in good hands…and I can’t begin to tell you what difference being in therapy has made for me, in body, mind and spirit. I could thank, and will, my therapist for everything, but she would probably scold me. She says it’s all me.

So I am taking the responsibility for my recovery, my evolution and adaptation.

I am doing all my own bandaging now, going to see her once a week for updates. I get fitted for compression stockings in three days and will be happy to only have to bandage at night. This is something I will have to deal with for the rest of my life but, now that I know what is wrong and have been trained to help myself, I am not letting it interfere with anything as much as possible.

If you do not see me on MSN or Yahoo as much this is why. I am still here, just not able to work in front of the pc as much. I utilize my laptop a lot more these days for most things…I am still here though, so drop me a note. :)