A Day in the life...

Part of understanding Lyme disease and it’s co infections is to approach education not just from the science and medical perspective, but from the people affected by the disease.
Walking through the shoes of the people with Lyme. Going through a day and feeling and seeing what they go through. So, in this spirit I am going write about one of my relapses. Relapses happen from time to time due to stress, not staying on protocol, exposure to mold and many more issues. It can happen to any patient at any time after remission.
I had made plans to go to a festival. I was so excited because some friends I know do this event and there is a wide variety of people who go there. I also had mistakenly thought it was closer than it was. (I thought it was a town 45 minutes from me versus the town it was which was 2 hours and forty-five minutes away.
I packed everything even though I was feeling off, I figured I would take my time and ask my husband if we might go together so he will drive.
Next morning, I woke up with a family of cicadas yelling in my ears, pain screaming through my head and a rash searing my belly with pain and an insatiable itch radiating down to my knees. I crawled out of bed and got downstairs to feed the dogs. I put an oil blend for migraines on my head and back of my neck, pulled myself up by the counter and put a pack of ice on my neck.
I let the dogs out, moved around holding the walls and pulled out some readymade jello, my med packs
and migraine medicine. Put everything on the table, sat down and ate then took my medicines. I messaged my friends to say I will see them after my medicine took effect.
I let the dogs back in and sat loving on them while I waited for the meds to take effect. Soon the buzzing in my ears settled down and the pain in my head eased a bit. My throat became thick and it was hard to swallow because of the medicine but I am accustomed to such things.
I got up moved towards upstairs walking in crooked directions but I was moving, so I went and got dressed.
 
My husband and I had a cup of coffee together as we talked about the day. He pointed out to me I had made a mistake about how far the event was and asked if I felt up to going. At the time, I felt maybe I could so I asked him if we can go to the store to get my dandelion tea as a test run.
We went to the store and as time went on where my clothing touched my rash, my skin was on fire with pain and itching, my head was light and I weaved back and forth while walking and then when sitting I felt like I was still weaving. My husband and I talked about my symptoms and expressed concern. I was going to be head strong because I want to see my friends, I want to hand out my business cards, I want to get my work done, but I noticed how gentle my husband’s words were.
Common sense won over stubbornness. As I called my friends to tell them I would not make it, tears streamed down my face the sun was beautiful, the breezes amazing and all I felt was physical and mental pain as the itching and burning seared down to my legs. Clearing up the symptoms will take time but the inability to see my friends, enjoy a beautiful day really pissed me off.
The rest of my day was filled with resting, being with the dogs and family, detoxing and medication. I did get to sit on the front porch for a while and quieted my anger with deep breathing and knowing I will be back up and around to drive my family nuts eventually. (The thought makes me smile).
And that was my day. Itchy, painful and uncomfortable. As a health coach, I know all the things to do to get better and I apply what I need for my symptoms. The symptoms are ever changing and it takes time to remedy them. As a person, the time it takes to heal properly and the complete faith believing I will is the hardest practice to stick with. If you ever worry about do I practice what I preach, I do. Every day. It is my life.
Wishing you joy and love,
Christina
 

Tough Topic

First let me tell you the latest events:
July 25, 2017, Tuesday @ 10:00 am
Presentation with Dr. Nancy Fox at Elkridge Elementary School.
July 30, 2017, Sunday 11:00 am - 6:00pm
Pagan Pride Day in Martinsburg WVA at Mason Dixon Historical Park, 79 Buckeye Road, Maidsville, West Virginia .
Tough topic
This morning I am pondering, not lightly, the topic of how Lyme disease changes the lives of couples.
There seems to be many couples who go through many facets of emotional difficulty when one or the other partner get Lyme disease. Not many couples stay together during the healing process. It is a hard road to go on. It definitely tests all facets of a relationship.
There have been discussions about how Lyme disease can be transmitted through sexual contact. (It is also congenital for those thinking about having children). This brings up the difficulties of communicating with your partner about the disease and all the emotional side effects occurring during times of intimacy.
On one hand, it seems basic knowledge to practice safe sex. There are those who did not know they had Lyme and may have infected their partners unknowingly. It is a scary topic boggling the minds of single people and married couples alike. In writing, this I am having a lot of mixed emotions so I figure it is an important topic to deal with.
Let me do this on a personal basis:
When I found out I have Lyme disease I was a bit stunned and had no idea it was communicable. My husband and I are a typical loving couple and carried on our relationship as we always had. We began to talk about things but went through phases and not necessarily at the same time.
It was a bit later I had found out about the nature of the disease.
This was many years after I had my children and been active with my husband. To say I was riddled with guilt, shame and many questions, well, undeniable. What had I done to my family unknowingly? How do I ever get over the possibility I gave this disease to my loved ones? It is devastating.
Here is the good news: They have been tested regularly and have come back negative for Lyme disease. Do I still worry? Everyday. Is it far from my mind?  Nope.
I am learning to cope with all the emotions moment by moment as things come up. I also talk with my husband openly about this subject so understanding and compassion for each other is practiced during our lifelong commitment to each other. Easy? Hell no. Frustrating? Hell yes.
So not only has my drive been messed up by crappy symptoms occurring during this disease, but it has been depleted by the emotional side effects. Crap! I love my husband so much, but how do I go back to being wildly passionate when I don’t feel that way? Will I ever feel beautiful again? Will I have a sex drive again? So many questions.
 It takes time. It takes finding ways to bring myself back from fear and panic and putting myself in my husband’s place. My husband also has told me we have a lot more than sex invested in our marriage. His support is so crucial through this journey.
There is no way to explain how important it is to have someone accept you and just be there. Little everyday things bring joy: a cup of coffee together, a small conversation about things going on in the day can make me feel so much more comfortable in my own skin.
I saw my body as hideous due to the weight put on from this disease. I saw my mind unattractive from the loss of memory and inability to speak properly. My confidence was shattered due to the loss of friends, family, and acquaintances from being sick. All of this adds up and gives a self-image that can be distorted
It is hard for others who do not have the disease to understand the depth of these problems. Never in a million years will I belittle anyone else’s symptoms because I know how much it hurts when people belittle mine. Before I truly understood about this disease, I didn’t “get it”. The saying, “You don’t get it until you get it, is so true.
I will leave you with this thought. Imagine living with someone who has trouble speaking, cannot tell you thoughts, wants to be with you but is afraid to touch you, hides bruises and rashes from you in fear. These are things a Lyme patient goes through. And more…
Many blessings,
Christina

Back from Bless The Woods 6

Hello All,

Just got back from doing the “Bless the Woods 6 “Concert in Fairplay MD.

My partner in Can Do With Lyme LLC, Adrian VanKeuren runs a fundraiser / Awareness booth at the event and she is fantastic to work for and with.

We saw many people who have been exposed to ticks in varying ways and possibly have Lyme but were just uncertain.  I will put a list here of possible ways to tell the symptoms

1.       If you can’t breathe

2.       If your heart and chest hurt beyond reason

3.       If one of your limbs turn purple

4.       If pain and numbness of limbs occur without cause

5.       If you black out for no reason

6.       If you have sudden vision changes

7.       If for no reason you cannot walk

8.       Seizures for no reason

9.       Severe headache with numbness following it

10.   Localized severe swelling or limb or joints get hard

Bottom line is if anything occurs that is surprising and different from the symptoms you may have any normal day, go get tested and put in your file that anytime you get bloodwork done you want a Lyme test. As a patient, you have the right to get the test.

For the fella that lives in his van, Use the bug balm regularly.

For the musician from “Sun and Rain”, for the issue we talked about, experiment with what foods bother you. Eating gluten free, dairy free, sugar free and nightshade free is very helpful. If you need anything give me a jingle or message.

Sad announcement: We will not be at Frederick Pride this year. There was a mix up in paper work. I will miss the event terribly. Please, any of you that go, have fun for us.

For all of you, keep in touch with Adrian and me so we can be of service to you. We are in a time when all of us need to be aware and conscious of this problem. It is the responsibility of all of us to bond together and do what we can to help our community. This disease not only affects us but affects the future of the Human race. It is time to drop all agendas and work united.

Well, off to have some salad. Thanks for reading.

Blessings,

Christina

Art Fundraiser for Lyme Education

<div class="canva-embed" data-height-ratio="0.5" data-design-id="DACRqMrr4Lo" style="padding:50% 5px 5px 5px;background:rgba(0,0,0,0.03);border-radius:8px;"></div><script async src="https://sdk.canva.com/v1/embed.js"></script><a href="https://www.canva.com/design/DACRqMrr4Lo/view?utm_content=DACRqMrr4Lo&utm_campaign=designshare&utm_medium=embeds&utm_source=link" target="_blank">Dublin Roasters Coffee Shop</a> by <a href="https://www.canva.com/candowithlyme2?utm_campaign=designshare&utm_medium=embeds&utm_source=link" target="_blank">Christina Murphy</a>

Tick season is already here

Preparing for Tick infestation:

 This winter is a mild winter.

Mild winters allow vectors to reproduce instead of going dormant meaning that there will be an increase in tick, mosquito and other vectors populations.

Spring, summer and fall will be filled with these lovely creatures and it is important to prepare for safety.

Here is a simple list of things to do to protect yourself from bites during this season:

Wear bright colors: You will be able to see ticks better against a white or bright background.

Treat clothes with permethrin or purchase clothes from companies like www.insectshield.com/, http://www.orvis.com/s/insect-repellent-clothing-by-bugsaway-from-orvis/3741  and www.bugbewear.com/ .  

Insectshield even offers to treat your own clothes.

 I treat my own before I know I am going somewhere outdoors for a while or away for a camping trip. Spray your clothes and hang them to dry and this will last for about 4-5 washes.

Wear head covering. Wear pants with the bottoms tucked into socks. Wear shoes. I started to get the old cammo with boots look fashion statement going to be fashionable.

When outdoors, stay on paths and do not stray in tall grasses. Avoid woodpiles and exploring bushes.

You can wear your favorite bug repellant or make a homemade repellant out of lemongrass and eucalyptus oils with water and put in a spray bottle. I like wearing cedar wood, but the verdict is mixed on that.

 Oils available here:  https://www.mydoterra.com/christinamurphycandowithlyme/#/

When returning home from an event, do a tick check and be sure to take extra care to check places like underarms, behind the knees, area where legs meet the torso or otherwise known as personal areas. Ticks love dark, humid and hair.  Check twice and get a good shower.  If you can have a buddy do a check for you.

Call your doctor if you get a fever, feel like you have the flu or get a rash.  Know what the ticks look like.

Prevention is key. Life can be fun and even getting ready for life can be made fun. Life is a great adventure and a little preparation can make the adventure last a long time!

So, now you know that, come learn more at any of the events I am doing this year.

Most are confirmed, but check in to be certain!

Event Calendar for 2017:

February 4th First Saturday Downtown Frederick

The Common Market:

March 8th 6:30 pm

March 22nd 6:30pm

March 29th 6:30 pm

Illuminate Frederick : Confirmed!

Sunday April 23rd, 11 am – 6 pm

FSK

http://illuminatefrederick.com/

Festival of Legends:

April 29th and 30th, 2017

Optimist Farm, Apex NC

Spring Ridge Spring Fling:

May 12th Spring Ridge Elementary School.th? 5:30- 8:00pm.

Maryland Faerie Festival:

 June 10 and 11, 2017
2564 Silver Rd.
Darlington, MD 21034

http://marylandfaeriefestival.org/

Bless The Woods

June 9 – 11        Fairplay MD

Frederick Pride Day

June 24, 2017: 11am-7pm
Carroll Creek Linear Park,
Downtown Frederick MD (between Market & Carroll Streets)

2016 Photos Here; 6,000 attendees

Event Details...

Illuminate “The Beach” Delaware: August 13

 

Illuminate Columbia: September 12th


PPD Event: Saturday, September 16, 2017
Location: The Unitarian Universalist Congregation of Frederick, 4880 Elmer Derr Road Frederick, MD 21703
Links: Website : Facebook
Email: frederickpaganpride@gmail.com

Pagan Pride NC?

Nancy’s Event: Oct. 7 &8

 

Illuminate Frederick:  October 22

Illuminate Annapolis: November 12th

 

Are Essential Oils Supportive for healing?

Oils and enhancing healing for Lyme:

There was a time when breathing in the fragrance of camphor and eucalyptus was an essential thing in Grandma’s house in order to relieve the symptoms of a cold. Who can say whether it was the comfort of the steam or the essential oils from the plants themselves that felt so healing.

In the same token, there are essential oils that have been said to be very beneficial in the healing journey of Lyme disease. The familiar scent of Lavender is very soothing and calming. Can this be helpful? I do believe so. Lavender itself has been used for centuries by ancient cultures as a muscle relaxant, sleep aide and for its other healing properties.

With Lyme disease having so many different presentations in myriads of patients, Oils can be beneficial to soothe patients where mostly needed. One person may have heart fluxes and need something calming in the environment they are in like Lavender and Roman Chamomile. Another person may have focus issues and want the smell of Wild Orange or Peppermint in the air.

There have been some studies that have shown that healing can occur when oils have been introduced as a support modality. In other research specific oils have been found to bind to bio films and dissolve them.* Can this be beneficial in some circumstances? Surely it can be.

I find it fascinating that essential oils have been used in different cultures since the BCE eras. With that kind of staying power and dependability it makes me wonder what other wonderful things essential oils can do. In my own home I have used certain oils in a diffuser to give me comfort during a stressing time or freshen my living environment. It is proven that certain pests are repelled by mint which means they will not be bringing unwanted vectors into the house. (Like ticks or mosquitoes).

As a Head Gardener for a museum, I also understood from my research and education that Comfrey was used to reduce inflammation and was kept in most Colonial gardens as part of the family pharmacy. I do believe that there are other plants whose essences have been scientifically proven to be beneficial.

If ever there were a time to make use of all of God’s pharmacy, now is the time. When going for a protocol for healing Lyme consider having oils support you. If you want to know more, please contact me at candowithlyme2@gmail.com or contact your local doTerra representative. doTerra’s grade quality is of the purest grade I know of and the reps are very knowledgeable.

(do Terra is only one company that sells oils of this nature. If there is a company you prefer, fantastic! Definitely check them out and make sure whatever company you go with has a pure grade oils measured from an outside source.)

 *http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346404/

 Disclaimer: Christina Murphy and Can Do With Lyme LLC is not a medical organization, and they do not purport to provide medical advice. The information herein is provided in good faith for general information purposes only. We do not make any guarantee of the reliability or accuracy of this information as there is new information being discovered on a daily basis. Any action that you take upon the information here is strictly at your own discretion and we will not be liable for any losses or damages in connection with the use of our information.

This Holiday Season

This Holiday Season

Hello everyone. It has been a very event filled fall and the adventures have not stopped yet!

We are now heading into the Holiday season and whether you celebrate Christmas, Yule, Kwanzaa or Chanukah, it can get overwhelming at times.

I have written before about how having an invisible disease is hard. It is especially difficult during the Holidays because people around you may forget you are sick and remember how you used to be.

Expectations of yourself can be an emotional roller coaster and create an added stress that is not necessary. Here are some tips to not lose yourself to the Holiday stresses:

1.       Be kind to yourself.

2.       Set boundaries for yourself

3.       Set times for you to rest

4.       Remind others of the things you need to function well.

5.       Turn on some music to bring you joy. Create a playlist for each emotion. It will relieve your stress. Listen to the music so it can let the emotion flow out of you

So, what do you listen to?

Do you have a favorite playlist?  Share your playlist with us, let’s have fun discussing this!

Here’s to hoping we all have a great holiday and fill our lives with love and music!

PS   I want to thank Ric for his brilliant input for this newsletter!

Wondering Times

Wondering times.

This past Sunday I did the “Lyme in Winter” event with Julia Lockett.  It was fun and noisy and lots of information was shared. Sending thanks to the crew at Dublin Roasters Coffee shop and Julia for all you do.

During the past few hours, my phone has been charging and not been very cooperative as far as communication.  I have been wondering what if we had to go back to the way things were before cell phones and other technology that we enjoy so much.

Being a Lyme patient is very much like being separated from conveniences that we think are necessary or that we take for granted. Neurological difficulties and cognitive difficulties take away ones’ abilities to communicate or move like everyone else. It is, at times, unnoticeable, but it is still there.

There is a wondering on the part of the Lyme sufferer of how to adapt to this, (which can branch off to other thoughts where you lose the original thought). Also, the caregiver or family wonders what is going on with the person who has Lyme and contemplates on how to help or navigate life in order to be there for them.

It is hard sometimes and leads to frustration on all sides.  So, this Thanksgiving remember that your family member who has Lyme is not the same anymore. For those who have Lyme, trust that the people around you have no idea what you are going through and love them. I hope all of you have a wonderful Thanksgiving. If you need any help with recipes or product suggestions for food, message me at candowithlyme2@gmail.com. I have favorite stuff and recipes I use and I am happy to share.

Happy Thanksgiving everyone,

Christina

Learning Spoons

 

Learning Spoons

One of the hardest things people with chronic or complex illnesses learn is how to work within their abilities.

When we have a good day or there is a long backlog of needs, so we push our boundaries. We then end up exhausted, and back at square one.

This is one of my most difficult challenges on a daily basis. I feel fairly well, so I go to my job, then to the store and keep running until I cannot move. Guess what happens by dinner time? I end up needing help or just asking someone else to make it.

A very good friend told me about the spoon theory.

You have 12 spoons in a day, each representing the energy it takes to do a task.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

 

Example: For me, (each person has different levels of energy assigned to tasks), one spoon can be getting out of bed. On a good day, one spoon can be getting out of bed and getting dressed. You can see where this is going.  By the time I get off work, I might have one or two spoons left for the day.

Lately, I have been forgetting to keep track of spoons. This has led to exhaustion and my body becoming overly stressed. I have decided after having a hectic two weeks to get back to self-care and work within my abilities.  This means counting my spoons and communicating with my family about how things are going.

When caring for yourself, be honest about what hurts, what works and what you need to be healthy or healing. Communicate to those around you about these things and set up a system to succeed. It will make you happier and when you are happy, it is contagious!

Just because we live in a fast paced world does not mean that you have to overexert yourself. Be mindful of your own limits. Even small seemingly innocuous things such as electronics and smart phones can be draining. Maybe you need to turn them off to conserve your spoons. Explore and learn your own boundaries to keep yourself healthy. Be mindful of both your physical and mental states as you navigate your life. If something is taking too many spoons, budget your energy accordingly. By recognizing our new boundaries, we can live each day to the fullest without over exertion.

Cheers,

Christina

Support Groups: Helping deal with pain, stress, fear, loneliness and isolation.

I had a different newsletter for this week but found myself writing this today.

As I sit here waiting for people to come to the coffee shop to talk about Lyme, I think of days I have sat alone or had a filled room.

 I am here every Wednesday and invite anyone who is able to come, to come and talk. No topic is too big or small and all of it matters.

We are all affected by Lyme disease one way or another.  It can be by being a patient, being a caregiver, parent, family member or the physician who treats Lyme patients Every aspect of this disease is important to talk about especially when so few people will talk about it.

So many times I have offered information about Lyme to people who quickly say, “had that” and they quickly walk away like they can’t get away fast enough. I am left stunned.  It really makes me question myself.  Is being available every week for people to get answers to questions or to share information a good thing? Am I doing the right thing?

Yes. It is important. We all need to share what we know, what we have experienced so that others that come after us may learn. Lyme disease has been prevalent for many years. It is finally getting a foot hold of attention after forty some years of struggling patients and groups fighting like crazy.

The more these groups band together and become united, the better it will be. That comes back to support. Supporting each other, supporting people who feel they are alone. Joining in conversation with each other. Gathering together to talk about Lyme and its’ effects on home, work and family.

Let’s talk, comfort each other, give each other information, be informed and find those that feel isolated and let them know they are not alone. Let’s start getting mission statements in our churches to help the housebound Lyme patients and show them they are not forgotten. They are loved, not shunned.

Let us help each other to deal with the pain, stress, depression, fear, the sense of loneliness and isolation that this disease causes.

Much love,

Christina