Sharon E. Rainey's Blog, page 8

Keeping My Dreams

My day started out so awesome. I came into Katie’s Coffeehouse at 9 am to start working on the final Lyme Savvy manuscript. I sipped on my vanilla chai and relished in the moment of finally have the entire manuscript back in my hands to finish up.

A friend met me at ten am, as planned. She’s a painter and we have found that we have more life events and heart events in common than most.

She proposed the possibility of being able to go to Taos, NM for 1-3 months just to paint. The house is in Arroyo Hondo, where I rented a house my first time in Taos. The magic was happening again. I could barely contain my breath. When I attended my first writers’ conference eight years ago, that’s where I finally realized I AM a writer. I AM an author. My excitement was tangible once again on this cold winter morning as it was on that summer day after writing for many hours.

My friend then encouraged me to take a painting course. I have always wanted to take one, but have been too afraid.

I confessed, “Every time I have tried to paint, I have ended up painting words.” I felt as though I was letting her down before we had even started.

She immediately retorted with, “Well, what’s wrong with that? You can still paint using words!”

Permission granted.

In a few weeks, we will meet in her basement and she will begin this intimate process of teaching painting.

I came away from our time excited about learning a new talent, about the deepening of our friendship, and about the possibility of making a dream come true to go out to Taos to write for an extended period of time.

I arrived at work and was immediately met with circumstances that created stress, frustration, and disappointment. Then someone hurt my heart. And I am not sure they even know it. “To dream about writing in Taos for an extended time is simply ridiculous.” And it went on from there.

So, my wild dream of being somewhere remote surrounded by fascinating culture and magical vistas was squashed. And it hurt.

I think what hurt the most was that while for two hours, I dreamed of learning new talents, and dreaming new dreams, I was visualizing myself as whole, as wholly healed. I wasn’t thinking about my med schedule, or the possibility intensity of my herxes. I thought only of me sitting in a chair for hours, smelling the acrylic paints, the wet turpentine rag in my hand erasing the paint from my canvas.

My dream of Taos slipped back to writing at Starbucks when I can catch an hour or two away from the family and work.

Dreams keep us going. Dreams let us envision ourselves healed and whole. It’s important to dream.

But when the dreams are shared and then crushed by others, it’s important to remember we can still hold those dreams. We can still build them and make them come to fruition. Dreams give us goals. They give us a reason to heal. They give us a project to break down and figure out how to make it work. That’s all positive energy.

This week, I’m going to hold my heart a little closer in, and I’m still going to dream of being a writer so famous and so rich and so motivated that I can take three months off to write in a casita in the desert.

What is your dream?

 

Sharon’s Public Service Announcement Regarding Blood Clots

I’m here to remind you of signs to look for in a deep vein thrombosis. I want to be that earworm that you think about when you are on a long car ride or plane ride and you probably aren’t moving your legs enough.

On May 8th of 2015, I was admitted to the hospital with a DVT in my left leg, starting at my ankle and coming up to my femoral vein. I had waited two weeks to see a physician. My leg was so swollen I couldn’t fit a shoe on anymore. That is the only reason I went to a doctor. I had no pain, no specific tenderness, no red spots, no veins suddenly appearing.

I had just a swollen leg.

I also had pulmonary emboli. I couldn’t catch my breath. But I didn’t realize how bad that breathlessness was until it started to resolve. My aunt died of a pulmonary embolism while being treated for Lyme disease. I should have known better.

What could be more incredible than surviving two weeks of an untreated blood clot the length of my leg?

Finding out that two years prior, I had survived another significant “pulmonary event” – I THOUGHT I had a Baker cyst in the back of my other leg that had exploded.

I had a swollen leg that was tender. I never went to see a physician for it. I was busy taking care of our niece who had just had her tonsils out. The Doppler study that I had in May showed it was definitely a DVT that resolved on its own. The vascular surgeon kept telling me how lucky I am.

Having these co-infections of Lyme disease tends to make our blood thicker. Inflammation can do nasty things to us that we aren’t even aware of.

When you are sitting at your desk, on in a car, or on a plane, make your feet do the Happy Dance. Pump your legs, get the blood flowing and moving. Remember, it can happen anywhere to anyone.

And if you have a swollen leg or swollen arm and can’t figure out why, get it checked out.

 

Healing from the Cellular Level and Up

I’m not a fan of resolutions. I found this on a few people’s blogs and so I am stealing it! I started the list but then my thoughts started to wander . . .

A new skill I would like to learn: Well, I would like to learn how to quilt, but I think that would be the start of a new obsession/addiction. I think I have enough skills that I have learned; I just need to hone them a bit more. I hope to have two of my books published in 2016 and I have ideas for two more, so writing is what I really want to do more of.

A person I hope to be more like: maybe because it is the anniversary of his death, but I want to be more like Jim Rainey b/c he was a man who exuded pure kindness. I want that.

A bad habit I would like to break: Biting my nails? I wouldn’t put money on this one though.

A place I would like to visit: Turks and Caicos – going there very soon!

A book I would like to read: https://www.goodreads.com/review/list/2152254-sharon-rainey I have about 150 on my Want to Read list . . . I don’t think it will ever reduce to below 50.

A letter I am going to write: I already wrote it. I thanked Brightview Senior Living for the care they gave my father in law during his last three months of life. It has been a year, but I wanted them to know we still appreciate all they did for him.

A food I am going to try: Hmm . . . I am pretty open to trying new foods, so I guess I will have to see what comes up. Jeff is the best chef ever, so I have already tried many, many things.

I am going to do better at: being patient with the healing process. Ok, I really don’t think my patience level is going to improve, but that’s what I want to improve.

I will remember: That just because I can help someone doesn’t mean I have to.   Especially when it comes to my detriment. A good friend reminded me of that this week and it helped me in making some major decisions.

So these are interesting goal setting ideas, but realistically, what do I plan for 2016?

I plan to start treatment for Babesia.

I plan to publish two books (Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners and The Best Part of My Day Healing Journal)

I plan to start writing at least one more book and maybe two

I plan to spend more time in nature and with my husband.

I plan to start walking again and remain free of any further blood clots.

I plan to raise my face to the sun more often and to soak in the warmth.

I plan to listen to our wind chimes more often.

I plan to play with our dogs every day.

 

I pray every year that my parents don’t die. I know this is inevitable, but I am just being honest here. I pray that 2016 is not the year that I lose a parent.

I pray that our children will be happy, healthy, and able to take care of themselves in doing what they love.

I pray that our children spend time with people who admire, respect, and love them as much as we do.

I pray that none of our dogs die this year.

 

I am letting go of others’ transgressions. I’m letting them off the hook.

I am letting go of our house “stuff” that is cluttering us physically and spiritually.

 

I am remaining steadfast with the number one question I ask myself when trying to make a decision: Will this help me heal?

I am trying to accept this Babesia diagnosis and letting it bring me the lessons I need to learn. But I remain steadfast in wishing this would be a curable disease. I know my LLMD is going to do all he can to heal me. So I am in this 100% for the “cure”, not just for the “treatable.”

Jeff and I will probably be asleep when the ball drops. I have found that rest and sleep are key elements of my healing. So I don’t fight the fatigue as much anymore.

My wish for everyone?

Healing.

Whether it is physical, emotional, or spiritual. Or any combination thereof.

Here’s to healing from the cellular level and up.

Best Health Blogs of 2015

If you have found my blog helpful in your healing journey, will you vote for Lyme Savvy as one of the Best Health Blogs of 2015?http://www.healthline.com/health/best-health-blogs-contest Look up the word Lyme, then wait for the options to show up underneath.  Lyme Savvy should be in that list. You can vote one time each and every day from Twitter and from Facebook until January 21st! Thank you!

Our Secrets – What’s Mine? What’s Yours?

I’m sitting on my living room couch with tears streaming down my face proving that I am tired, stressed, and emotional. I have a pretty good idea of what’s causing it, but it’s something I haven’t been ready to talk to many people.

This is a BIG pity pot I am sitting on right on.

In the 12 Step Recovery program that I participate in, one of our slogans is: We are only as sick as our secrets. I have been keeping this a secret and it’s making me sick.

As most of you know, I started treatment for Bartonella, a bacterial co-infection of Lyme disease about six years ago. I finished treatment four years ago and have tested negative for Bartonella since then. SUCCESS.

I then was at a plateau for a few months, undergoing more testing, trying to figure out why I was still experiencing many symptoms. I had originally tested positive for Babesia, a parasitic co-infection of Lyme Disease. Its symptoms are likened to malaria.

This is when we discovered I had Protomyxzoa Rheumatica FL 1953, a parasitic co-infection of Lyme Disease. We were thinking that this new protozoa might be causing a false positive on the Babesia test.

The protozoa had been discovered by Dr. Stephen Fry only a few months prior. Imagine just finding the parasite and then trying to figure out how to treat it or kill it. Look at how long we have known about cancers and the continuing search for a cure. Luckily, I have a brilliant physician who tried a few things and they seem to have worked. If all goes as planned, next week will be my last IV for treatment for the PR FL 1953 and the multiple variants that had taken up residence in my blood.

Four months ago, I started developing new symptoms and other symptoms were worsening. That’s a scary place to be when you are supposedly healing.

Dr. M sat me down and explained me that all my new symptoms were typical Babesia symptoms. He said the Protozoa didn’t give me a false positive. He reminded me of when he had put me on the Babesia meds a year ago and my significantly negative response to them – which means the meds were attacking the diseased cells.

One of the intricacies of “Lyme disease” treatment is that can be like peeling an onion.

The patient can present, as I did, with symptoms that are most inclusive of one infection. In my case, I presented with Bartonella symptoms. But as you kill that infection off, it can leave room for a latent infection to take advantage of the open space and then flourish. That’s what happened with the protozoa and then again, that’s what happened with the Babesia.

Babesia is an infection in the blood cells. It is throughout the body. If you have been diagnosed with Babesia, you cannot donate blood or body organs.

Babesia is, at this time, incurable.

And that is where my sulking and self-pity come in. I am so angry about this. I want to be DONE. I want to be WELL. I want to have this OVER.

I was so close to being finished with the Protozoa treatment and then Dr. M tells me I have to start Babesia treatment.

He started laying out his plan to me and I just lost it. I cried. Because this time, unlike six years ago, I KNOW what lays ahead. And I just don’t want to do it.

It has been a rough year for me, medically. On May 8th, I was admitted to the hospital with a Deep Vein Thrombosis (blood clot) and pulmonary emboli. The clot started at my ankle and ended just short of my femoral vein in the pelvis – not a minor incident. I spent seven months on meds, finishing off with two surgical procedures. I am now no longer in danger of developing another DVT in that vein. But it was a tough period that brought to light just how “lucky” I am.

Lucky because:

I waited two weeks to see a physician for the leg swelling. By the time I was admitted, I was in danger of having a fatal pulmonary “event.”
From other testing, I found out that two years ago, what I thought was a Baker cyst popping open in my other leg was actually another Deep Vein Thrombosis that resolved without intervention.

Lucky? Yes. Still sulking? Yes.

In the midst of my self-absorbed pity, I received emails from two friends in similar circumstances. One read, “Three surgeries, two major broken bones, H2N3 flu, heart attack, not to mention the Parkinson’s, which is always with me.”

Still sulking? Hmm, let’s rethink my situation.

I’ve been like a two-year-old whining and resentful. And I need to stop because at this point, it’s not helping me heal. I told Dr. M I was going to sulk about this until 2016. I needed the time to just feel and be in the ick-i-ness.

Remember those symptoms I was having? I am still having them. And they are not going to go away unless I do something. If I want to heal, I have to take the medicine.

I keep getting stuck at the word INCURABLE. Incurable is what they were saying about Bartonella six years ago. Dr. M told me he was very confident that he could significantly reduce my Bartonella symptoms. And he did. He eradicated the Bartonella. And he did the same with the Protozoa. I watched the process in my blood smears.

He is willing to give this one a try as well. He’s willing to try to eradicate the Babesia from my blood. He is offering me no promises. But he is brilliant. And I trust him. He knows my limits; he knows what makes me tick (pun intended). He knows how to motivate me.

Oddly enough, just writing this down takes the pain away. It relieves the anxiety and helps me refocus on the target.

Letting go of my secret of being diagnosed with a third co-infection allows me to move forward with positive energy and stronger determination.

I think I will stop the self-pity tonight. No need to extend the unnecessary and unhelpful.

I will enjoy the upcoming holidays and a long planned vacation in January. And then we will start on our mutually agreed treatment plan. I can do this. I’ve already done this with two other infections. It’s just one more. One step at a time.

15 Minutes Just for Me (and You)

I should be Christmas shopping, either physically or on line. Instead, I am sitting in Starbucks sipping on a chai. My week started with surgery on Monday at 7:30 am and ended with staff resigning during my first hours back at work on Friday.

I have a lot to do between now and December 24th. And none of it matters to me right now.

I decided to come here to get some writing done instead of doing the necessary “chores” and sulking about it. This is my mental health day I think.

Inundated this week with emotions and riding a roller coaster that I think is probably normal for the holidays, but it always seems to catch me off guard. My healing from this latest surgery has gone significantly better than the first procedure a few weeks back. But today, I woke up with a tingling in my leg and when I tried to walk, I was like a weeble (“weebles wobble but they don’t fall down”). It took some balancing. I finally realized this is the phase of healing when the other veins are trying to take the load of the vein that has been cauterized. So there is a little stretching and expanding happening.

It’s a good representation of my life these past six months. I’m healing, but there is some wobbling happening. I have to get used to my new normal. It’s not good; it’s not bad. It just is.

I got a huge response to my previous blog about hanging in there until the miracle happens. So I know I am not alone and you aren’t either. A lot of us are feeling stress and my friend E., who landed in the hospital with a heart attack due to stress, will tell you it’s just not worth it to let that stress take over.

That’s why I am writing in Starbucks. I was stressed and couldn’t figure out a way to dispense with it. Writing is my go-to method. And I haven’t really written all week.

Every day between now and New Year’s I plan to do something for myself that is stress-free for at least 15 minutes. That’s my gift to myself (and to everyone around me). Yep, I could fill those 15 minutes with a lot of other stuff, but if I take those 15 minutes for me, I will actually get a lot more accomplished in the other minutes of my days. And just for the record, it can be more than 15 minutes. That’s the minimum.

Who is with me? Send me a note telling me what you did today for 15 minutes that was stress-free and just for you. Let’s see if we can get a list going.

Don’t Give Up Before the Miracle Happens

It’s the holidays –  I’m just recovering from my second surgical procedure in two weeks. I’m sore and tired. My back hurts from sitting in an uncomfortable chair.

I have purchased maybe 6 gifts and only 4 are for my own family.

I am VERY behind in shopping and VERY behind in work tasks.

I feel STRESSED.

I came home from my first day at work this week and was exhausted from just four hours of work.  I spent the rest of today on FB just letting my brain waste away.

Sounds like I have a chronic illness, doesn’t it?

So, I am saying to you, IT’S OK.

It’s ok not to finish everything.

It’s ok to put up 1/3 of the decorations.

It’s ok to go to bed early.

It’s ok to eat light dinners.

This also tends to be the time of year when we re-evaluate what has transpired in the past twelve months.

For many of us in treatment, it’s usually followed with a heavy sigh, disappointment, frustration, and sadness.

I got some not so great news a month or so ago (more on that later).  I was pissed off.  Sad. Mad. Defiant. Defeated.

A year ago, I thought my next phase would take six months and i would be DONE. I was wrong.

I am hoping to finish up this treatment protocol by the end of December.

And, in January, I have to start a new protocol for another co-infection.

I’m pissed.  Really pissed.  and really sad. But we didn’t know a year ago what we know now.

I’ve killed Bartonella (bacterial infection) and I’ve killed Protomyxoa Rheumatica FL 1953 (parasitic infection).  And I’m going to annihilate this third one.

So, you are tired. I’m tired. But we are going to keep going. We will not stop.

We will continue to fight.

But for this week, just go a little easy on yourself.

Love yourself more.

Drink more water.

Sleep  more.

Stretch more.

And reach out to someone else who understands this disease.  It will help you both.

Don’t give up before the miracle happens.  I have seen numerous miracles in my recovery and I believe there are more to come.  So hang in there with me, ok?

Another Bump in the Road

I ran into a woman at the post office whom I had not seen in almost ten years. I didn’t recognize her. She came to me. She was fashionable, perky, beautiful, wearing swanky glasses and third floor Nordstrom clothes. She asked me how I was doing and I swiftly avoided answering by asking her if she had grown her hair out. She looked how I wish I could look.

Thirty-four years ago, I had my first bout of unexplained fatigue.

Six weeks into my first semester at college, I couldn’t stay awake. I was exhausted. Could not keep my eyes open. I literally slept for 23 hours at a stretch. I was losing weight and obviously not attending classes. My parents brought me home and I underwent innumerable blood tests. I wish I had kept those test results. I just remember them saying everything was normal. There was no explanation for my intense fatigue. I stayed home the rest of the semester and returned in January, rested and feeling better, still with no explanation of why I needed so much rest for so many weeks.

For the past week, I have had almost the same fatigue – sleeping 10 to 11 hours at night and 3 hours in the afternoons. And I can’t make myself wake up.

I have had some of the worst pain in the past week as I have had in the past six years. I don’t know why. Doctor has some ideas and suggestions, but nothing is working as quickly as I want.

The inflammation is back in spades at a vascular level. I had blood taken yesterday for the surgery I am having Monday and it came out like sludge, as it used to six years ago before I started treatment. While I can’t prove it, I know there is a connection between vascular inflammation and hyper-coagulability. I know the inflammation will lessen and the blood will thin as the barometric pressure rises and with the doctor’s suggestions.

How can I explain how I feel to the woman in the post office? I have been battling this disease for decades. How do I tell her that I am leaving work after two hours because of the indomitable fatigue and pain?

I’m not searching for sympathetic comments. I’m just trying to tell you that even though I have made a ton of progress, some days and weeks just suck. It’s the 3 steps forward, 2.5 back thing.

Right now, I’m just doing what I need to do to prepare for Monday’s surgery. I’m getting the left saphenous vein ligated – they go through the groin, cut a piece out, laser both ends shut and we are done! Surgery takes two hours and I will no longer run the risk of those nasty blood clots coming up to my femoral vein. I’ll be out most of the week, but hopefully back on line by Tuesday afternoon.

Interview with Dr. Mozayeni at NorVect Conference 2015

I like this interview for numerous reasons:

He explains what his experience was in the practice and what he was seeing that didn’t fit in with borrelia – which led him to Bartonella

He explains the difference between #Borrelia and #Bartonella

He talks about big data and genome sequencing coming soon at a cheaper rate

He talks about biofilms

He talks about the other diseases that are confused with Bartonella – just a set of symptoms, not a diagnosis. Love that.

He emphasizes the importance of finding the root cause.

He talks about not being able to sleep at night until he can fix the problem – that’s very comforting to the patients. Shows how much compassion and drive he has.

He places emphasis on personalizing the healing process for each patient.

He talks about the politics and if we do it the “old way” the patients would have to wait 17-21 years for something to change. Great ending.

ILADS 2015 Conference Notes from Better Health Guy

I love Scott Forsgren.  He is clear, concise, and just a nice guy who understands how to translate what the physicians are saying so the patients can understand it.  http://www.betterhealthguy.com/ilads-2015