As I enter week 2 of my physical suffering with intense pain, I ponder about the spiritual aspect. I have been seeking a reason God would allow this suffering to continue.
I certainly believe in natural consequences and inconveniences in life but I equally believe in spiritual consequences and the spiritual aspect of our everyday commonplace moments.
I found an interesting phrase in a devotional about forgiveness written by the late Dr. Jack Hayford. Coincidentally, I have been wrestling with forgiveness for 3 weeks. Forgiveness and its impact on reciprocity.
For example. I treated these people well, they did not treat me well, do I just move on or continue treating them well? I know the general Biblical answer and the specific answer for this specific situation. (I need to forgive and continue trying to be kind, even generous to them.)
So this devotional on forgiveness in my inbox caused me to pause.
And I found this interesting phrase that I had to dig into.
"... pure faith in the overriding providence of God."
And it brought me back to my current suffering in pain.
With this physically painful situation that I have done everything in my power to resolve, do I have faith in the overriding Providence of God?
Let's define those words.
Overriding. 1. More important than any other consideration. 2. Extending or moving over something especially while remaining in close contact.
Providence. 1. The protective care of God. 2. God as providing protective or spiritual care. 3. Timely preparation for future eventualities.
Interesting.
Do I have faith in the overriding providence of God regarding my physical suffering and tremendous, extended pain?
Can I rest in this moment of my life? Can I stop fighting for resolution and accept that God has my best interest at heart and that He is aware of - and possibly has planned for - this suffering?
If I accept that, what changes?
What if the suffering is not the result of natural circumstances in an earthly environment? What if it was purposed by God?
Can I believe that God is good?
Because I definitely do believe that. So can I believe in his overriding providence? That He is in overriding control and that I am in His protective care?
I can. I do.
That removes fear. That removes my furious, all-consuming efforts to remove the pain. That redirects my focus from self to God. Even, shall we say, from self to others.
Can I rest in this pain?
Take it a step further.... Can I serve in this pain? Can I be a blessing? Can I be faithful?
I must. And it should be natural, supernatural really, not forced or coerced. It should flow.... Rise above the suffering.
I have not blogged much in the last couple of years.
2014 Crushed me.
2015 Broke me.
2016 Changed me.
2018 Fixed me. Wellness was my word for the year.
2019 Energized me. Vitality was my word for the year.
So. There you have it. And how's your life? Lol.
This year has been amazing. It required some serious courage, ambition and dreaming. I hope to resume creative blogging in 2020.
For now, I leave you with some of my art from this past year. I hope your year was full of blessings and happiness as well.
So.... I did it. I signed up for six weeks of the FASTer Way to Fat Loss program with Coach Patti Holsenback. #FWTFL
There is a big learning curve, but Patti is patient and very good with instructions. Also, the first week is all about learning, you don't start the work for real until the second week.
I never had trouble with fat loss until I was in my forties and then it became a real problem. But this program is great, I feel great and am not usually hungry.
Patti also is a certified Pre- and Post- Natal Fitness Coach and Nutritionist. She works to improve diastasis recti, incontinence and more. She also hosts a strong core / strong mom workshop, offers free downloads, writes a column for a local newspaper and has a blog that she occasionally remembers to write on.
Speaking of Right-On!
This wellness thing has been working out great, the year just gets better and better. I've experienced better wellness all year long, I really feel great.
I've added oil pulling to my routine, 2 x a week or so, in my 52 weeks to wellness.
It's difficult at first. It's so gross. I hate coconut oil to begin with. Then to swish it around in my mouth for 10 - 20 minutes without swallowing is just difficult.
I know that you know this, but I have to say it: Spit it out in the trash, not your sink as it will clog the drains.
My hints:
1. Do it while watching TV. For me? Also while walking around the living room. If I stand still, I'll swallow some or gag, I don't know why. Guess I have to keep my mind off it.
2. I have no other hints. Just do it. Breathe through your nose, don't swallow, spit in the trash. That's it.
So I picked up these exercise bands from Amazon. I thought they were a LOT bigger, but they are small. I'm using them with my arm and leg exercises to provide a little resistance.
Y'know.... 52 weeks to being a better person. Week #31 and all that.
(Pictured: a device that loosens my spine as I use it each morning)
As we approach the Fall, I want to update my 52 Weeks series a little bit. Upon the new year, I resolved to try each week to add something beneficial to my life. To get healthier and/or happier. Healing and wholeness, spiritually and physically.
I've been doing it faithfully, I just haven't been blogging about it.
But I'll tell you what -- it's made me become way too busy. There's way too many things I have to do each day now, so some of them I've cut down to just do a few times a week. Either way, I'm way too busy and one of these weeks, my healthy thing to do will be to drop something, lol.
In this post, I want to say that I've gone to Capital City Chiropractic Maximum Living and they assessed my spine. I'm receiving a 4 - 5 month regimen to regain my spinal health and improve my posture.
(Pictured: I wiggle and exercise on this thing to loosen my spine each morning.)
This chiropractor, Dr. Tim Losby swears I'll be able to go off all my meds when he's through with me. I have doubts....
I have blood cancer and I am on chemo. I can't imagine my spine will fix blood cancer, but we'll see.
I certainly believe in the 5 Essentials that they preach:
Minimize Toxins.
Maximized Mind.
Maximized Oxygen and Lean Muscle.
Maximized Nerve Supply.
Maximized Quality Nutrition.
And the 3 Tenements stressed by Maximum Living:
1. WE BELIEVE THAT STORIES MATTER.
2. WE BELIEVE IN BEING ONE STEP AHEAD.
3. WE BELIEVE THAT THE CAUSE IS THE CURE.
Also, Dr. Losby says, "
"GOD HAS GIVEN YOUR BODY THE ABILITY TO HEAL ITSELF, ALL WE HAVE TO DO IS REMOVE THE INTERFERANCE"
The synergistic effect of the CDC's aggressive vaccine schedule HAS to be studied for safety. It's catastrophically unchecked & I dare say negligent. Our kids are in peril. #soangry
Before 1991, there were only 29 doses of 3 vaccines. After 1991, there were 46 doses of 16 Vaccines. My children born before 91 had no issues and my child born after 91 had a mysterious allergy the Dr attributed to dust and eczema. Since the late eighties, vaccine manufacturers cannot be sued. But in 2008 the Vaccine injury compensation program was developed. It has since then paid out 3 billion dollars. Look up the Hannah Polen case.
Are we really going to wait until the autism rate is one in two? Or that every single child has a chronic illness by age 3? (Food allergies, Eczema, seizure disorders, GI issues and learning disabilities)
This is one problem. The second problem is the escalating rate of cancer among adults. I believe the studies are being suppressed here as well so that we can continue to have cell phones, WiFi, dirty electricity, gmos, plastics and a variety of toxins literally everywhere.
I am at a loss on how I can make a difference.
If you would like to learn more, I point you to Miller's Critical Review of Vaccine Studies and The Vaccine Friendly Plan.
We had a lot of fun New Year's Eve and don't we look tough in this picture?
I devoted last year to wellness and trying homeopathic and integrated options. Some things I have kept in my life on a regular basis (dandelion root tea, gall bladder wrap, essential oils, etc), some things I have discarded (turmeric tea, yoga). I had every intention of writing more about it for you but I did not feel like blogging.
.
This year, I have decided my focus will be relationships. Won't that be interesting? Infusing my relationships with intention.
.
I have added a new and very interesting client and I'm changing my role with another client. One I expect to be fun while the other will be a challenge and, I anticipate, not much enjoyable. It is not the direction I wanted to go with my work and probably will not like it. But… one should always try. I might be surprised.
I've a growing concern about the health damages we incur from increased cell phone and WiFi use, the carcinogenic factors from the RF and EMF radiation. More and more studies are coming in and proving this to be true. Environmental Toxins Information
In this past week's Thriving Child Summit, Dr. Libby Darnell, DC gave us some practical tips for reducing our health risks from. EMFs. I'm going to summarize them below for you. Following that, you can see a video from 2014 wherein Dr. Devra Davis, author of Disconnected, presented the scientific data supporting this claim about wireless radiation. Worst Wireless Products
Baby Monitors. There isn't a safe one on the market. If you really must have one, try to have just audio and not visual which has a stronger signal and keep it as far away from your baby as possible.
Computers. Try to have them wired, not WiFi. If not wired, say on a laptop or chromebook, etc, don't use it when it's plugged in, that makes it worse. When plugged in, you're using a worse type of current. Your cell phone is worse when it's plugged in as well. Using a laptop is safer than using a desktop because desktops have to be plugged in. Using a laptop with WiFi turned off is even better. If you have to use a desktop, there are filters you can buy to clean dirty electricity. Use two filters per desktop.
WiFi. The ideal situation is to have everything wired and skip the WiFi. If you must have WiFi, go to Home Depot or Lowe's and get an outlet timer. Plug your power cord for your WiFi into that timer and set it to be off at night when you're not using it. Give your family a span where it's not transmitting. Also, have the router as far as away as possible, especially away from your kids.
Cell Phones: As much as possible, keep your cell phone in airplane mode with the WiFi turned off, especially for your children. Why do they need a cell phone anyway? The radiation penetrates their brains much deeper, much worse than adult brains. If your kids are playing games on the cell phone, you can have it in airplane mode with the WiFi turned off. Always use head sets, never use Blue Tooth. There are actually warnings deep in your phone's settings about not using your headset. Laws are being drawn up to ensure cell phones must be sold with headsets.
Keep your cell phones away from your body as much as possible. Keep it near a window so every time it looks for a signal, it is not pinging your body. Studies are proving that cell phones stored in a woman's bra have directly led to breast cancer. Studies are proving that cell phones in men's pockets are leading to infertility.
Teenagers seem to be especially difficult to convince to take this issue seriously. As a parent, do what it takes to protect their health. Dr. Libby's advice? Bribery actually works. Monitor their phones. Each time you find it in airplane mode with the WiFi off, you reward them.
If you are pregnant and need to use your cell phone a lot, there is a uterine cover you can purchase
Electric Meters. Most electric companies now use Smart Meters to monitor your electricity usage. These smart meters transfer information a set amount of times and each time it is responding, it is dangerous to your health.
Look at your electric meter.If you have 5 clock looking things, you’re ok, it's still analog.If there’s a number, digital number, you need
to take action. If you have a digital meter, call the electric company.Find out how often that signal is transmitted,
and is it transmitted through space or through wire?Then you can purchase a material, similar to tin foil, to put around the meter, wrap it, look for videos on how to do it
– don’t want to focus it to your neighbors, either, encase the whole thing.Some companies come out and do it.You, legally, aren’t supposed to touch the
meter.
Also, you could call and see if you can opt out,
swap your digital meter for analog, which might require a small fee.I recommend paying the fee to have someone
come out and read it.
Where is that meter located?Do you have a child sleeping next to that wall?Move them away right now.Same thing with major electronics.Fuse boxes and main energy sources, get
kids away from them, a WiFi router – get it away from blasting yourself.Fridges give out a lot of dirty electricity as well.
Light Bulbs. Light bulbs have become an issue for dirty electricity now as well. Just use the old fashioned ones, they are a lot safer. LED Bulbs.
Microwaves. Just don't use them. If you must use one, stand as far away from it as possible while it is in action.
Here are some tips for cleaning yourself from your exposure to EMF and RF radiation. First, test your house and buy filters. Then, take an Epsom bath daily or several times a week. Spend a few minutes each day with your bare feet in the dirt. Spend a few minutes each day simply standing on tin foil. Yes, this works, all that excess energy flows out into the foil. Do it at night while brushing your teeth.
Should you use those expensive grounding mats or grounding sheets?If you're in the US, England or Australia – don’t do it.If you do it, you’ll be bringing IN that
dirty electricity.You’re plugging in a
very expensive fabric covered tin foil.You plug it in, then you’re bringing that electricity into it and then
you lay on it.That dirty electricity
goes through it.If you stand on it NOT
plugged in, it works.But it works just
like tin foil!Just buy tin foil. Check your symptoms of radio wave sickness here.
Once you are protecting your children at home, what should you do about school or the dance studio or wherever they spend a lot of time? Find out where their WiFi routers are located and make sure your child is not near them. Then offer to buy filters for the classroom. Talk to the principal or school superintendent. Arm yourself with research from Stetzer Electric. Once they are aware of this, they may offer to test the rooms for dirty electricity and put filters as needed. Some people get shielding clothing for their children, but this is usually difficult for the children. France has already outlawed dirty electricity and more places are outlawing WiFi in public schools.
The following research is from 2014. I'm sure there is updated information elsewhere, but this can get you started. The labyrinth of YouTube is exhausting to me. Besides, I need to go get my feet in the dirt right now. Love you, mean it!
How are you doing with all your New Years resolutions? Are you participating in my #52Weeks of change? I am still participating, I just haven't been posting about it.
Around the third or fourth week, I added this anti-inflammatory tea to my morning routine. Honestly, I haven't noticed a change in my health yet. Add the following to your cuppa boiling water:
1 tsp. turmeric powder
1/2 tsp. ginger powder
1/4 tsp. black pepper if you can tolerate it, I hate it
juice of 1/2 lemon, I usually add more
2 tsp. raw honey
Google's all over this, so you can easily find alternative recipes. You can use more ginger, but I'm not a fan, so I keep mine minimal. Ditto with the pepper.
If you recall, on week one of my personal #52Weeks, I began Yoga. Well, I'm still doing it, but I haven't improved much because first my son had a burst appendix and I spent a lot of time with him during his 5-day stay at the hospital. Then I was in a bad accident on January 23rd in which I had bruised ribs, a bruised nose (I think maybe broken) and a badly sprained wrist. The doctors thought the wrist was broken in two places and they put it in a cast at first. Then another doctor viewed it differently and put me in a splint. I still have another week in a wrist splint from that. While six of us in the vehicle were injured, one friend died from her injuries five days after the accident. It was an absolutely horrific week and I still can't believe she's gone. It's been a tragic start to the new year for my friends and family.
In addition to the Yoga and turmeric tea, the weekly changes include being deliberate and intentional with love, forgiveness, gratitude, & releasing bitterness. The #52Weeks of change will include abstract changes like these as well as the concrete, physical changes. Go for it! Join me with #52Weeks of change in 2017.
Paralysis Recovery Specialist Ken Bryant, a well-known
therapist among the spinal cord injury community, will visit Aiken, SC, March 6
– 10, 2017 to provide his healing touch, at very little expense, to those
paralyzed from spinal cord injuries or strokes.
Bryant has experienced a 100% success rate with restoring
some feeling or movement among his clients.His method involves restoring or rerouting signals from the brain to the
muscles, he does not repair a damaged spinal cord.Bryant stated that when he works on a set of
muscles, it takes two to five minutes to turn the muscles back on.“You can see the change immediately,” he
said, adding, “All we’re doing is turning muscles on, then they (his clients)
have to build their strength up over time.I have a God given gift to un-paralyze people.I’ve never once seen where it hasn’t
worked.”
Bryant’s program usually consists of a five-day program at
his Pinellas Park, FL location, working only a couple of hours each day with
his clients.The clients then continue
strength training on their own with a personal trainer at a gym near home. In Aiken, he will offer one session per
client, un-paralyzing one muscle or muscle group, in an effort to see as many
clients as time permits.He has
previously offered this program in Oregon, Cleveland, Toledo and more.
Adrian Steele, General Manager of Workout Anytime FitnessCenter on Richland Avenue in Aiken has generously donated the use of their gym
and equipment for the week Ken Bryant is here.Bryant invites anyone with a paralysis, ages 6 months and above to come
receive his touch at Workout Anytime during the week of March 6 – 10, 2017.Limited space is available and appointments
must be made by February 24.For more
information or to schedule an appointment, please call Vickie Staley at
803.571.3630.
Bryant is volunteering his services and asking only that his
travel expenses are paid and that his assistant receive her fees.Donations and minimal client fees will go
towards these expenses.Fundraising has
begun to cover the car rental, hotel fees, and meals.Any additional funds raised will go towards
reducing the client’s fee.The Ken
Bryant Project of Aiken County has been established for financial donations to
cover the expenses.The Law Office of
Mr. Adrian L. Falgione has generously kicked-off the fundraising by donating
$1,000.
Vickie Staley, a Wagener resident and founder of the Ken
Bryant Project of Aiken County, can testify to Ken Bryant’s success.Staley’s son, Tyrell, became a C5-C6
quadriplegic after a car accident a few years ago.In December of 2016, Tyrell spent a week with
Bryant in Florida.Staley reports about
that visit, “Ken massaged the muscles to wake them up, he started in Tyrell’s
back.I thought ‘What is he doing?’There were no machines, nothing electrical,
it was a gift from his hands.This man
truly has a gift.”
Tyrell was not able to sit and balance himself before going
to Florida, or hold the water bottle in his hand or drink from it.He was not able to abduct or adduct his leg
muscles.After visiting Ken Bryant,
Tyrell can do all of this and more.He
is now building his strength by working out weekly with Cole Lee at Workout
Anytime, followed by an hour of Physical Therapy with Stephanie Vaughn at
Sports Plus, Aiken.Tyrell’s current
goal is to stand up with a walker in 2017.
Staley wants other people with paralysis to have the
opportunity for healing without the huge cost associated with a week-long trip
to Florida and Bryant’s in-house fees.She invites you to join her.
There are many ways you can help.You can spread the word to let people with
spinal cord injuries or paralysis from strokes know that they have the
opportunity to meet with Ken Bryant in Aiken.You can donate the cost for a meal or a night’s stay at the hotel, or
simply donate any sum to the Ken Bryant Project of Aiken County.Contact Vickie Staley at 803.571.3630 for
donation information or to schedule an appointment with Ken Bryant.
Mariah Carey's epic fail (in which she lost her earpiece, couldn't hear the music, was trying to lipsync, walked around in a daze, whined about not having her own holiday, etc.) at the 2016 Dick Clark's Rockin' New Year's Eve party in NYC was to be expected, it perfectly closed out 2016 with the cliche' she graciously tweeted that best represents 2016:
The saving grace of 2016, for me, was the birth of another grandchild and addition of another son-in-law. Those two redeeming factors save 2016 for me. I hope you have a few redeeming factors of your own.
But as we move into 2017, I remind you that changes begin with you. With me. Each of us have to change something to make our lives better.
Join me is making some shifts in your personal life, your spiritual life and your civic life this year. Stick an F in Mariah's ubiquitous phrase and run with it:
Shift Happens.
We have 52 weeks ahead of us. Join me for the next 52 weeks by creating a positive, healthy shift in your behavior each week. Keep it private or share it with the hashtag
#52Weeks.
My first change for week one is to start yoga. I've spent two horrible years on the couch crocheting and crying. I've lost almost everything. I was a stay-at-home mom and housewife. My kids grew up and moved out, followed by my husband. We sold the house in which they were raised. I'm about to lose one of my part-time jobs. I'm 52 with little education, little experience and a chronic terminal illness. I'm discovering most people don't want to hire me. Yoga seems like a great place to start -- stretch, open up and strengthen my core. My second week, I will add releasing bitterness and my third week I will revive love and forgiveness. Beyond that, we'll see what enfolds.
Join me, please. Because errrbody else has left me, ha! NO, JK, simmer down, JK!! (there's that bitterness!).... of course not, join me because you deserve it, we deserve it and America will change if each one of us makes a few shifts, baby! (like.... 52 shifts)
I visited Greenville, SC this past week for a few days, the purpose of which was to attend an MPN Research Foundation Dinner and learn more about my Polycythemia Vera symptom treatments and research progression, but I found Greenville to be a wonderful mini-vacation town. I encourage you to visit the town for a few days, especially the Falls Park at Reedy Creek and the Main Street strip (just don't eat at the Japanese Hibachi place) (and DO stop in at Jerky & Vine to get some grass-fed, nitrate free flavored jerky). That's the limit of travel info. in this post.
Back to the MPN and PV discussion.....
First, if you are newly diagnosed with an MPN (Myeloproliferative Neoplasm), a rare type of blood cancer that comes in four types: ET (Essential Thrombocythemia), PV, MF (Myelofibrosis) and CLL (Chronic Leukemia) and looking for information, check out the MPN Research Foundation site. It is an awesome launching pad for this disease.
Incyte'sVoices of MPN sponsored this FREE dinner -- and more across the states -- with Sandy Allen-Bard, MSN, NPc, ANCC, AOCNP from Cornell NYC giving the presentation in Q&A format. I wish I had taken some family members with me so they could learn about the disease. Several others in the group seemed to learn a lot and I'm sure we all appreciated being there. The "dinner" was just sandwiches and chips, so if you go, don't go hungry. Look for an MPN event near you.
This dinner gave me an opportunity to speak to an MPN expert face-to-face as well as other patients with the disease. It gave care-givers an opportunity to do the same as well as to talk to other care-givers. And? Of course we got swag.
Primarily, at this dinner, I was seeking advice on questions I should be asking my doctor. This disease is so rare that most hem/onc doctors don't know much about it and have very little experience treating it. Upon diagnosis, I knew instantly I had to be my own advocate and really push my doctor and his staff. I had a second opinion at the Mayo Clinic in FL and a third opinion at Duke with a doctor that specializes in MPNs. I intend to return to Duke every three years to compare notes, learn more about ground breaking research and clinical trials -- things my doctor isn't aware of.
Voices of MPN is another comprehensive informative site. I believe this site is owned by Incyte Corporation, a pharmaceutical company, so beware they have a financial interest. But it's still a great site. Voices of MPN is more people-oriented while the MPN Research Foundation is more disease oriented. Voices of MPN shares patient stories and fosters a sense of community and support groups.
I'm curious what the others thought about the dinner. For me, it was very basic. If I had paid money for it, beyond the travel cost, I'd have been dismayed. I thought it would go deeper. However, if I had taken family members who know nothing about this disorder, I'd have been very, very happy with it. I would love to see more of these events with two or more different "classes" for different levels of patients. Voices of MPN encourages patients to share their stories and connect and at this dinner, we definitely did that. Prior to this dinner, I had never talked with anyone else who has this disorder. I am very grateful for that.
The information on this blog is not a substitute for a visit or a consultation with a healthcare provider.
The American Society of Clinical Oncology Conference (ASCO) was held in Chicago last week, June 3 - 7, 2015. Giant leaps were made in the presence of and discussion of blood cancers at this conference this year - myeloproliferative neoplasms (MPN) such as the one I have - Polycythemia Vera (PV). Historically, this conference has focused on tumor cancers and hasn't included much on MPNs, leaving it to the American Society of Hematology conferences.
This is a big step for us rare MPNers and I've been watching the conference news reports as they trickle in. The biggest news came from Baxter/CTIBiopharma on their Pacritinib data, a drug for myelofibrosis patients with low platelet counts. (I have the opposite problem, high platelets.) Also the conference reported information on allogenic stem cell transplants for MF. Scroll down for links to some articles from the conference.
In addition to new drug trials, researchers have started combining drugs and watching intently for effective treatments. The key to the drugs we have so far is personalized treatments. Some patients adopt a wait and watch attitude while some are more aggressive and proactive (me). One patient at the conference reported, "I feel like a thorn in my doctor's side." Exactly. Me, too. It's difficult to feel that way after appointments and many times I want to give up and say "whatever."
Much research focuses on trying to reverse the disease process, in other words, trying to keep it from transforming to MF or Leukemia. And secondary to this, is trying to create an acceptable quality of life. That's pretty much where I focus and push my doctor. I'm a HUGE believer in quality of life over quantity.
"The process of scientific advance with patients is a little bit like watching sausage being made -- ups and downs. For some, pulling back that curtain or that process can be too much information, but I do think the partnership between physicians and patients, particularly in these kinds of diseases, really is key. A lot of the advances have really been made by patients being so generous with their time or involvement in trials, or a lot of their bloodwork to be used for research -- All of these key advances have really come from those sorts of efforts." - Dr. Ruben Mesa
MF and Leukemia are the biggest fears of most patients with an MPN. PV or ET, two of the four MPNs, can evolve into MF or Leukemia, but it doesn't happen to most of us. It happens to under 10%, maybe around 3% if I remember correctly.
Also at this time, those of us in the MPN world are celebrating the tenth anniversary of the JAK2 discoveries, chiefly the JAK Inhibitors. I may not have this perfectly understood, but here's my understanding. The mutation of the JAK2 stem cell results in this rare cancer. Therefore, finding meds that inhibit the mutation are a better treatment than simply slowing down the cell production. The JAK2 mutation is how I was originally diagnosed via a bone marrow test in a small doctor's office where I was dazed and confused, surrounded by struggling chemo patients and loving care givers.
I am currently on an oral chemotherapy called Hydroxyurea. We check my blood counts every other month and adjust my dose. It's all a numbers game right now for me. When my blood counts are in a certain zone, I itch like crazy. In another zone, I am tremendously fatigued and fight foggy thinking or "chemo brain." In another zone, I suffer bone pain. All my life, my parents, husband and doctors were helping me try to find out why I suffer "leg aches." As a child, we called it "growing pains." I now know that a lot of it is bone pain from this disease. When the blood counts are in another zone, I get restless leg syndrome and can't sleep well. And always, I have abdominal pain; in fact, that is what took me to the doctor in the first place. We think it is spleen related, but not sure because my spleen isn't enlarged enough yet to show up on the MRIs. Etc. Etc. Etc.
Most hematology/oncology doctors don't know much about this and have very few patients. When my doctor was hedging some of my questions, I asked him if he currently has any other PV patients. He hedged his answer and basically admitted he has had very few in his career. When he first diagnosed me, he said it wasn't cancer. After my research, I asked him if it's cancer and he admitted yes. At first, he told me 8 years is the average life span after diagnosis. After I did research, I saw that this information is outdated. Currently, the average life span after diagnosis is around 20 years.
Upon my diagnosis, I visited specialists at Mayo and Duke and together came up with a game plan which I brought back to my small town hem/onc. I regularly check the Internet for more information and have joined several support groups. Everybody is just as confused as I am. But the camaraderie is tremendous.
Links:
MPDchat- If you or a family member has an MPN, join this Google Group, there is no fee to enter. By far, this is the best "support group" I've found. Top level questions and answers.
In a previous post, I mentioned for the first time that I have polycythemia vera, which is a myeloprolific neoplasm (MPN), which is a mutant stem cell in the bone marrow that results in the overproduction of any variety/combination of blood cells.
On of the very, very minor effects of this is pruritis - terrible itching. If you know me, you've seen me itching like I have fleas at times and it's embarrassing sometimes and annoying all the time. It is due to increased histamines, similar to an allergic reaction, due to increased Eosinophils and Basophils in the blood count.
This video is the best explanation I've found, so for you fellow MPN people, take a listen. Also, allergy sufferers, this will help you understand your reactions better: Dr. Susan Leclair.
In the hormonal madness called menopause, I often find
myself in a fog of confusion, staring blankly, wondering what I am supposed to
be doing. In addition to menopause, I have foggy thinking from the chemo I take and the blood cancer I have as well. It presents in that I know I am supposed to be
doing something, something more than just standing in the middle of the kitchen
or driving around town.But without a
sticky note To-Do list or electronic calendar to look at, I’m at a loss.
Confused.
Agitated.
Feeling less-than.
In a fog.
It is refreshing to me, at this stage of life, to have the
gps, something mothers and grandmothers before me didn’t have to help them muck
through.
The soothing voice, confidently telling me “Head West!!”My shoulders straighten, I lift my
head.
Yes.
I’ll head West.!!
That’s just the thing to do.
That soothing voice breaking down my life
into step-by-step directions is very appealing to me.I turn it on sometimes when I’m not even going anywhere.I just want to hear someone who knows what
they’re doing.Someone who feels
confident and full of hope.....
Our team participated in the USC March for Babies today and raised nearly $500. Thank you to all of you who supported us. We appreciate your support very much.
In South Carolina, on average, 159 babies each week are born too soon. Premature babies spend many weeks, sometimes months in the NICU. Many have life long health and developmental consequences, many regain good health, and sadly, some do not survive.
The March of Dimes' March for Babies raises funds for research to increase the health and well being of premature babies. University of South Carolina's walk today was a student-led 2.5 mile walk fundraiser for the March of Dimes. The students did an excellent job with this first time effort.
