Santa Fell off the Roof

It’s been a traumatic week around here.

Last Sunday, I was taking a short nap, and Bill went out to work on the Christmas lights. I was awakened by a horrid sound of banging and crashing along the roof.

Ellen was the first to get outside… I had to get my CPAP off and started calling loudly… “Did he fall? Did he fall?”

He fell…

I’m sorry, I can’t share the whole story yet – it was too traumatic – for Ellen, for me , for Chris and for my dear “Santa” Bill. It still makes us all a bit sick to our stomachs…

We got some pressure on the severe bleeding – and called 911. Poor Chris was sick with a fever as Ellen and I headed off to the hospital to meet the ambulance.

Bill has ended up with a broken ankle, a shattered heel, and four severely cut fingers. Our prayers are that they won’t get infected as they were very dirty wounds, and that he doesn’t loose part of a finger.

But for now, the poor guy is learning how horrible it is to be chair-bound. He can move around on crutches for a few minutes, but can’t do much else.

He has had excellent care. His cast is black as you can see… but here you also see the hand knitted toe warmer that are donated to the orthopedic center.

It’s the same center that many Portland Trailblazers are treated at – so, with a black cast – it seemed only fitting to get a red toe warmer… and it looks a bit Christmasy… maybe????

I don’t think we all realized just how much Bill did for us around here! But the kids and I got the whole meal made Thanksgiving (kids doing most of it) and we have our Christmas tree up! The kids went out this morning and cut down a lovely tree – we worked together to get it in the stand, and Chris did the lights this year!

It’s a strange thing to become the caregiver to my caregiver. It’s a scary and awesome thing. It’s hard and I’m wearing out – but we’re both getting a bit of a taste for each other’s lives.

At the ER – they handed me a bag of his clothes they had cut off – and a bag of his other belongings. The “Santa Clause” card was missing… so somewhere in Camas or Washougal is an EMT who is going to have quite a surprise these next couple of weeks (*wink*)

Thank you all for your thoughts and prayers.

Tomorrow… we’re sleeping IN!!!

I attended the CFSAC meeting… in bed!

© Lori Andrews – published with permission by artist

I know it’s been a long time since I’ve blogged. My dear sweet friend Emily is bedridden from a current treatment she’s undergoing and I’m inspired by her ability to get a couple of blogs out – even in that state.

These past few months have not been good ones – health wise – for me. Since the beginning of August I have slipped lower and lower into a flurry and flare of symptoms.

Some very exciting news has been released concerning ME/CFS – and other neuro-immune diseases. A privately funded center, The Whittemore Peterson Institute for Neuro-immune Disease (WPI) has made a HUGE discovery and is turning the medical world upside down.

On October 29-30, the NIH Chronic Fatigue Syndrome Advisory Committee Meeting convened in Washington DC, and Dr. Daniel Peterson was scheduled to present this great new finding.

I spent all day in bed – watching the meeting that was broadcast live over the web. It was an amazing, historic day – and quite an eye opener for me. The politics, the frustration, the many people who passionately care about our cause and are working on our behalf brought tears to my eyes many times. It also brought some sighs, a few grunts and a one or two groans!

I really enjoyed hearing Dr. Peterson speak. I wish I could see him. I received an application and could easily get to Tahoe as it’s an easy flight and I have family in the area to care for me, but it’s an 8,000-10,000 dollar, out of pocket visit.

Why? Because, though Dr. Peterson cares deeply for his patients and has worked for over 20 years trying to understand this illness – there has been no support from the government – very little funding and therefore, insurance companies find excuse not to cover this care.

It’s the sad – true – fact.

Also presenting that day was Dr. David Bell. He is the specialist I saw in New York who confirmed that all my symptoms – Dysautonomia included – are a result of ME/CFS. I wish I could see him again too – but he is so very far away, and retired. I admire him though, because retirement only means that he no longer has an office in which to see his patients… he continues to be involved in the cause of fighting for ME/CFS patients and working towards an understanding and possible cure. I greatly admire him!

The following week – still feeling bedridden, I rented a movie titled “I remember me” on Amazon to watch on my computer. It was made a year before I got sick.

The one fact that stuck so heavily with me is that the director of research for the CDC said clearly (10 years ago) that more women have Chronic Fatigue Syndrome, than Breast Cancer… and yet, he diverted 13 million dollars away from research for Chronic Fatigue because he doesn’t believe in it. (BTW – this is not a disease that only women get it – he was just comparing it to breast cancer)

There are many misconceptions about CFS. There are also many symptoms. But one thing is for sure now. There are at least 2 clear tests which define ME/CFS.

ME/CFS stand for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome … this is the “official” name for this illness. That’s like calling cancer the “Big lump syndrome”

If you’re interested in watching parts of the meeting I watched, you can find it here: Chronic Fatigue Syndrome Advisory Committee Meeting

  For over a year now I have been donating 10% of all my art proceeds to WPI, and will continue to do so until they no longer need private funding to accomplish all they do for us. I hope they will continue to make progress and that one day, I will be one of the lucky ones that gets to visit them in Reno. If you’d like to donate… here is their website: WPI … or come buy a piece of art :-)

 

 

Solve CFS – I AM part of the Puzzle

I am part of the Puzzle… I am puzzled… I am puzzling!

I am part of the puzzle: my ME/CFS has some very distinctive characteristics and as researchers work to not only identify physical markers of CFS, but also categorize CFS patients – I know that I will be a puzzle piece that fits into one or more of these categories.

Not all CFS patients experience the Autonomic Nervous System symptoms that I do – or to the extent that I do. I continue to deal with delayed gastric emptying as well as the loss of many other automatic nerve functioning as my ANS is affected by whatever has caused my CFS. Not all CFS patients respond as well to B12 injections as I have either – so that should certainly put me in some sort of category.

I am puzzled: ~My flares don’t seem to be connected to any food – any weather – anything I do or don’t do… they just come when they please. I can’t control their leaving either. They stay as long as they please – no matter how much I rest.

~I don’t know how to deal with exercise. One doctor tells me I must! Another that I should not! Another acknowledges “Exercise intolerance”, and yet encourages me to endure (which means my whole life will be centered around a day of exercise – 2 days of recovery – a day of exercise – 2 days of recover… doesn’t leave room for much else does it?)

~Some medications that make my ANS function better, make my CFS worse. Some medications that help my CFS, make my ANS worse.

~How long will I live with this? Will I end up, as many with CFS do - with lymphoma? Will I live a shorter life? Will I live a long life with all of these obnoxious symptoms – feeling like a caterpillar wrapped up in a cocoon?

I am puzzling: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has been around a long time. Unfortunately, it has not been in the forefront of research or education for most doctors.

Therefore, most of my doctors don’t know what do do with me. I get all kinds of responses – from  “are you depressed because the seasons changed?” to “well… just take this medication when that bothers you” to “you just need to exercise and get back into shape”…

WHAT? So… when I got sick while teaching Preschool Dance, playing tennis regularly and taking Adult Ballet classes… I wasn’t in shape? Ahhhhh… that’s why I’m sick??? (sorry – I start to get a bit tired of these responses and get a bit sarcastic)

The only doctor that I have seen, that truly validated and understood me was a wonderful doctor across the country who has treated CFS for many years. But he’s retired – and … across the country!

I am a part of the puzzle: A new research and treatment clinic in Reno NV (not my state – but at least my side of the country!) is in the process of being built. It’s called the Whittemore-Peterson Institute for Neruo-Immune Disease. They are already conducting and cooperating in research and will open their new center in 2010. I’ve been donating 10% of all my art sales to them. It’s my way of being a part of the puzzle for solving CFS.

I hope to be a patient there if that is ever an opportunity… and if I am ever called upon to be a research patient as I have been at Vanderbilt University for Autonomic Dysfunction – I hope to be a part of solving the puzzle that way too.

I’m even more excited about this new website www.solvecfs.org !! It’s connected to the CFIDS Association of America. Why am I even more excited? Because they are committed to funding research!!! Yes – possibly even funding the research taking place at WPI!!!! Now that’s exciting!

I hope you will consider becoming a part of the puzzle too… not a puzzle piece of illness… or puzzling to doctors – but one of many who will be supporting the research to put the puzzle pieces together for those who suffer from this illness!

Just visit the website… watch the video… read all the things that those of us with CFS would do if we were suddenly healed (one of the quotes is mine!) Read about their 2009 fundraising dream and how they plan to use the money and pray about whether you too could donate and add your picture as one of those who will be a “puzzle piece to SOLVE CFS”.

WWW.SOLVECFS.ORG

Here comes Autumn – The colors are changing

It’s been a difficult month physically. When my ANS ME/CFS flares, it’s hard to paint. It’s hard to do anything if the flare is bad – as it has been this past month.

I must say, I am slowly improving – but it’s amazing how FAST the crash can hit and take me down, and how long it takes to recover. The crash and the recovery do not match.

Sadly, I was unable to even get my painting turned in for the Fall Show of the Southwest Washington Watercolor Society which is currently in progress this week. (I won my first ribbon at their Spring show)

As I looked back at my blog, I realized how long it had been since I posted. So today, as the air turns crisp,and the leaves begin to turn, I wanted to share this new impressionistic Autumn watercolor I painted just before ME/CFS caused me to stall and crash.

I titled it “Serenity” because I imagine that is what I would feel as I walked up this country path. I hope there are few horses in that barn for me to pet on my way :-)

It’s available in my Etsy store and in my 1000Markets store. Right now, I have it in a dark brown frame with a cream mat and dark green liner – it looks beautiful framed and on my red wall!

Hope you have a wonderful Autumn, wherever you live. Our cool nights and dry days have been gorgeous. I’m sure rain is on it’s way, but I couldn’t ask for a more beautiful Autumn week!

Blessings,

Nose Dive

You pull back on the controls, the airplane soars upwards. As the nose points upwards, your airspeed slows and before you know it, you’ve entered what is known as a stall.

The airplane feels like it floats for a moment and then, it suddenly dives towards the ground. Not only that, it begins to spin and before you know it, the ground is spinning before your eyes.

I know this because I took flying lessons from my dad, who was a flight instructor. Part of my lessons included purposely stalling the airplane and learning to pull it out of a spin before you hit the ground.

They still scared me to death! There was too much to figure out and do in a very short amount of time, and under great pressure!

I’ve had an amazing Spring and Summer. The year started out a bit difficult – the loss of Bill’s Mom, his Dad getting ill, Bill’s back going out, the loss of Bill’s Dad… but my body, though tired and plagued with CFS, was doing well on my new injections, and my prescriptions from Vanderbilt were dealing well with my Dysautonomia.

A few bumps in the road – but wow… what a wonderful summer I flew through. But for some unknown reason, my flight has stalled. In fact, I not only stalled – I’ve gone into a nose dive – spinning out of control.

I’m trying to rest and wait it out. My head is filled with things to blame and ideas to pursue. But unlike an airplane – there really isn’t anything to do. My body is going to crash when it decides to crash and that’s all there is to it.

Psalm 33 reminded me this week that:

 “The eyes of the LORD are on those who fear him,

       on whose hope is in his unfailing love.”

It makes me think back to those flying lessons on dealing with stalls and spins. My Dad was a very intense teacher – and part of that scared me. I also wanted very much to please him. But at the same time, I knew he loved me and would never let us crash! I always knew that he had full control of the airplane and that we were never in any real danger.

I want my hope to be in God’s unfailing love for me – not in cures and medications and experiencing good times. But it’s not a natural thing to do – just like the steps for pulling an airplane out of a spin are not what you would “naturally” do.

But with practice – it can be done.

I am in a nose dive… but I am practicing – practicing – practicing…

30 Things About My Invisible Illness You May Not Know

As a part of promoting “Invisible Illness Awareness Week”, I’m joining many bloggers and posting my personal answers to these 30 questions. I hope it helps you get to know me a little better, and understand the illness I struggle with every single day – whether I’m out and smiling or hiding away at home in my PJ’s!

1. The illness I live with is: Partial Dysautonomia (often called POTS) which is a dysfunction of the Autonomic Nervous System  +   ME/CFS

2. I was diagnosed with it in the year: I went through many diagnosis before we narrowed down to what the real illnesses are, so this is a hard question to answer. My Dysautonomia was discovered and diagnosed in May 2004. My ME/CFS was confirmed only last year – June 2008.

I have been sent to the OHSU Fibromyalgia Clinic,The Mayo Clinic in Minnesota,  Vanderbilt University (where they do specialized dysautonomia research), and the University of Ohio in Toldeo. I’ve seen a multitude of specialists… Cardiologist, Neurologist, GI , Internal Medicine, Infectious Disease , Sleep Specialist (and sleep study), and a CFS specialist in New York. (probably others I don’t remember)

Each of these had their place and helped us along on the road to a true diagnosis and treatment.

3. But I had symptoms since: December of 2001... I got a bad virus with strep, a sinus infection and pneumonia. Then strep again about 8 weeks later. Then, as things progressed, I had to quit teaching preschool creative dance in June 2003  and the last speaking engagement I accepted was in 2004.

4. The biggest adjustment I’ve had to make is: Learning brand new ways of knowing and loving God and brand new ways to meet people, make friends, and love others! Also, adjusting to a very different brain – I can’t think, learn or remember like I used to.

5. Most people assume: If I’m smiling, I feel good. That’s not true. I can smile and feel really awful physically!

6. The hardest part about mornings are: that they come every day!!! Seriously, standing upright… pain… getting in enough fluids… and waiting for my injections to boost my brain and body function enough to get out of bed.

7. My favorite medical TV show is: (I don’t have one)

8. A gadget I couldn’t live without is: my laptop computer and my recliner chair.

9. The hardest part about nights are: staying asleep and dealing with my CPAP machine.

10. Each day I take ___ pills & vitamins: (sorry – not interested in sharing this one)

11. Regarding alternative treatments I: juice a wide variety of fruits and veggies for their vitamins/antioxidants/cleansing properties. I also drink a lot of tea – healthy teas and a wide variety including greens, Oolongs, and black tea.

12. If I had to choose between an invisible illness or visible I would choose: hmmmm… this is a hard question. I don’t like people assuming I feel well when I feel lousy and a visible illness is clear in that respect. On the other hand, I don’t like being noticed when I hurt or am ill (I hide away at home on my worst days) so I would prefer to be able to smile and be happy even if I feel horrible and people don’t understand my illness. BTW – my smiles and happiness are real. They don’t mean I feel good – they mean I have true joy and hope in my heart so I can smile and care about others even in my own pain and difficulties.

13. Regarding working and career: I’ve given up on both of these, but I’m OK with that – except that I really miss speaking at retreats and conferences.

14. People would be surprised to know:                                       1) Except in my very most worst times – my toes keep wiggling and dancing – even if I’m too tired to smile!

2) There is a symptom for CFS patients called “Exercise Intolerance”! It’s NOT a lack of conditioning. It’s a clinically proven condition, which means those with this symptom can exercise or be active one day – but it makes them more sick the next day. Yes – there are real ways to determine this physically!

15. The hardest thing to accept about my new reality has been: that I am still “me” – even though I can’t do anything that the old me was able to do!

16. Something I never thought I could do with my illness that I did was: learn to paint!!! And… sell my paintings!

17. The commercials about my illness: are non existent!

18. Something I really miss doing since I was diagnosed is: playing tennis with my husband, being in the Nutcracker Ballet, teaching preschool dance.

19. It was really hard to have to give up: Speaking at retreats and conferences. Hard… really hard!

20. A new hobby I have taken up since my diagnosis is: making Medical Alert ID bracelets! First I made them for myself, then I began selling them on Etsy. I don’t make much money – just cover costs… kinda… but I love serving others who have to wear these tags! I also enjoy making new friends online (mostly artist friends)

I have also started listening to books on tape! Never thought I’d do that, but have had to adjust to the way my brain now works.

21. If I could have one day of feeling normal again I would: Go on a hike, play some tennis and take a ballet class! Oh… and I’d have three meals full of all the things I can’t eat!

22. My illness has taught me: that nothing can keep me from the two heart passions I have: to love God and to love others!

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, I understand. I’m so tired too” ( see the quote on my banner at the top of my blog! There’s should be a different word for the fatigue that’s experienced with true Chronic Fatigue Syndrome.)

24. But I love it when people: Are honest when I look tired or sick, but still greet me warmly and let me know they are glad to see me anyway!

25. My favorite motto, scripture, quote that gets me through tough times is: My favorite quote is “Some people complain that God put thorns on roses. Other’s thank Him for putting roses on thorns”.

As for Bible verses…  it changes from day to day. My most common prayer request is for “Patient Endurance” – a theme I often find in Bible verses.

26. When someone is diagnosed I’d like to tell them: First, let yourself grieve. There are many losses with an illness and we are foolish to believe that we shouldn’t grieve each of them. And we should realize that God is grieving with us. Second, God has promised to bring about good in all things for those who love Him – and though we are grieving, we have hope… hope that His good is going to shine through… and hope for our eternal future!

27. Something that has surprised me about living with an illness is: all of the blessings that have occurred as a result. Even my daughter – now 20, but only 12 when I got sick, says that there are many good things in our relationship that wouldn’t be there if I had been well all these years. And I’ve made friends I never would have met without this illness. They are precious to me!!!

28. The nicest thing someone did for me when I wasn’t feeling well was: I can think of several things. In the early days of my illness, pain was often overwhelming and one day, a friend came and brought some gel that was specially for hurting muscles and she rubbed it in all over my whole body. The gentle massage was fantastic as was the gel! It was one of the first and most memorable gifts of service a friend gave me.

One time, when I was in the hospital, a friend came by and brought a basket full of healthy snack foods for my family to munch on when they were there with me. Another time, she packed up a china tea set and served me tea in a real teacup – right there in my hospital bed!

I also have someone who calls me when she is heading to the store and will even take a whole list with her and shop for me. I don’t have to think ahead or call and ask her… she just calls me when she knows she’ll be out and about!

And meals!!! Ah… dinners have been brought in some of my worst weeks and knowing that my family is fed is such a relief.

And I also had a friend who came over and cleaned anything I wanted her to. It was again, in one of my lowest times – and she just dusted, and cleaned the bathroom and vacuumed – all those regular tasks that I hadn’t been able to do for a long time.

I have another friend – with an invisible illness herself, who regularly sends me cards in the mail telling me she is praying for me!

Oh… and I had a acquaintance come and bring me a comfort basket – it was so sweet!

(I keep thinking of more!)

3 friends of mine, who also suffer from similar illnesses – have all sent special things in the mail at special times! A necklace reminding me to pursue my hope and “patient endurance” – a book – a beautiful beaded bookmark and a hand knitted prayer shawl!!! 

29. I’m involved with Invisible Illness Week because: I understand that the average person often isn’t even aware of many of these illnesses – and yet, once they are, they don’t know how to help.

30. The fact that you read this list makes me feel: amazed and I wonder why you would want to know all of this about me!

 

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

She’s at it again!

Jessica, the owner of the company “SpaGoddess Botanicals” is at it again!!! She’s offering another giveaway!

I just met Jessica a couple of weeks ago at the Artwalk in PDX. Bill and I went down especially so I could meet her – and so I could pick up a new “Rock Star Detox Scrub”.

It was great to meet her and while I was there, I also met a new product “Double Love Scrub”. I bought one of those too and I love it so much!

It is made with the sea salts that I love and make my skin so soft. She’s added a variety of lavender oils and in the shower the scent of lavender is strong, relaxing and inspiring.

But once it’s rinsed off… my skin is left with just a gentle lavender scent – smooth as can be and the perfect amount of moisturizer! I love it!!!

I’m blogging about her giveaway so I can get another entry and maybe win a $25 GC. I know I’ll continue to use these two products, but there are two more that I really want to try.

If I win the GC I really want to try the Jasmine Moisturizer. You know how much I love florals!

But I also want to get her “Enchanted Forest Scrub”. I didn’t buy it a couple weeks ago because I thought it was going to be perfect for fall so I’m waiting to give myself a treat. I smelled it though and it’s fantastic! I can’t wait to use it!

Visit her store to see all of her fantastic products: SpaGodess Botanicals.

Then visit her blog “It’s time for a Summer Giveaway” and you can get yourself a bunch of entries into her giveaway too! It ends on Aug 18th.