It's a chilly morning here in upstate New York. Yesterday (as I showed on instagram) there was a light falling of snow that covered this beautiful countryside. Sometimes, when the snow had gently fallen like this and left a beautiful blanket of snow I can't help but think of Psalm 147:16: "He sends the snow like white wool; he scatters frost upon the ground like ashes." As I have spent the better part of three days in bed due to extreme pain this picture of a blanket was such a cozy reminder of God's tender love. Yesterday, as we drove to my doctors appointment I was in awe of the beautiful landscape. As we made the trip across the beautiful countryside I felt that I was stepping into Narnia with the Pevensie children.
Happy Saturday friends! I hope you have a wonderful day and weekend!
There have been numerous (and very well-written) articles in Chronic Illness world relating to the often heard (and often emotionally dismissive) "but you don't look sick". I personally have never written a post on it, even though I have often thought about it. Most Chronic Illnesses (and even serious illnesses) and Chronic Pain is not outwardly visible so it can often leave the bystander confused that if someone felt "so poorly" they surely would look sick. (Frankly, I have never really understood exactly this sentiment because what does a sick person "look like"? Is there a general stereotype? Is it someone who is rail thin? Well that doesn't always "fit" because many medicines induce weight gain and inflammation. Is it someone who has lost all of their hair? Well that doesn't "fit" because even some seriously ill Cancer patients - where everyone "connects" treatment with loss of hair do not lose their hair. Is someone who is sick "look sick" when they are completely pale? Well that doesn't fit because some medications (and herbal supplements) induce facial redness and flushing.) SO maybe we as a society don't know exactly what someone who is sick looks like. Maybe, if I am so bold there might not be a set standard and we need to embrace those who are struggling without having any preset ideas as to what a person will look like when they are sick...
or what they will "ACT" like.
I have heard the "but you don't look sick" (or something along those lines- "well you look absolutely wonderful") statement so many times throughout this journey. Sometimes- it is by well-meaning friends and family members who are trying to boost morale. BLESS them. Other times it is by someone who I truly believe is genuinely trying to be encouraging. Either way, I have heard it said so many times that I have lost count. But recently I heard something I hadn't heard on this journey. I was chatting with someone who I hadn't spoken to in a while (but who follows the blog and my instagram feed) and they said (after I answered how I was doing) "but you don't act sick".
I was completely caught off guard. I asked them what they meant and as they (somewhat accusingly) stated that "in the past year you have traveled out to California (twice), gone on a cruise, written three books (with one being published in November), worked on graduate work, ran an Etsy shop, started SEEN Gathering, and have agreed to speak at a couple of engagements in the coming year... I mean, Rebecca, your instagram feed doesn't even show someone who is laying in a hospital bed. Most of the time you are SO upbeat on the blog and on social media... you just don't act sick."
I was speechless. Part of me wanted to jump to the defensive and start listing off a rebuttle to everything that they said and the other part of me wanted to hang up the phone. I am embarrassed to say that it was the small 1% of me that wanted to answer with a loving and Christlike attitude. My defensive attitude won for several minutes on the phone as I was speechless and then started to explain that I only traveled to California because my doctors office is located there, that the cruise was a gift...
and then I stopped.
I quietly asked if we could continue this conversation at another time and we agreed to come back to it. For several days I grumbled to the Lord about the fact that I felt like I was now not only "not looking sick" but now being accused of not "acting" in a certain way. And then I started thinking... what does a sick person act like? So I called my friend back and asked her what she meant by her statement. Basically she felt that since my instagram feed shows lots of outside pictures and that it is happy I don't act sick. We talked for a while but as we hung up, my friend admitted that she felt that if I was "truly sick" (her words) then I would be acting more somber and forlorn.
So for the past few weeks I have really been thinking about this conversation and about the stereotype of how "sick people should act". I started questioning friends and family (and even strangers) and asked what their stereotypes were about "how a sick person should act" and what they thought and questioned beyond the scenes about those that they know who are sick "but don't act sick". These were some AWESOME conversations. Here were the most popular questions with my answers that I gave them:
So for the past few weeks I have really been thinking about this conversation and about the stereotype of how "sick people should act". I started questioning friends and family (and even strangers) and asked what their stereotypes were about "how a sick person should act" and what they thought and questioned beyond the scenes about those that they know who are sick "but don't act sick". These were some AWESOME conversations. Here were the most popular questions with my answers that I gave them:
Do they spend a lot of time in bed?
Yes, most of us do. I currently spend approximately 20 hours in bed. The other four are spent taking detox baths, working on the shop in the room next door to my bedroom in my house, doctors appointments, etc. Sometimes (where I get most of my outside pictures from) if I am feeling strong enough I will ride in the car to places although I don't go into stores a lot due to my immune system.
Does a person who is sick cry a lot?
Oh my yes. I find GREAT comfort in Psalm 126:5 each day. At the same time though I know that if I spent all of my time crying about my situation I wouldn't have any energy to fight my diseases. Some days the tears flow uncontrollably but on those days I curl up with the Psalms and ask my sweet friends for extra prayers.
Does a person who is sick really laugh? Shouldn't they be more sad?
Y'all I try to find humor in the smallest of things ALL the time and I am not alone in this. AND we do laugh over here A LOT in my house because God is still good with lots of blessings everyday.
Why doesn't a person who is sick share their problems and health stuff more if they feel so terrible?
I don't know about you but I frankly love to "escape" when I am on social media. I love connecting with others, I love bringing awareness of Lyme Disease and its issues (and the other health things I am dealing with) but most of all I want to bring glory to God in each of my endeavors. To be frank... my symptoms are often debilitating and often times extremely personal. I think that I cover it fine by saying that I deal with a ton of pain, nausea, and fatigue. If you want to find out more I am sure you can hear it from someone but I don't care to share the details of spending 2 hours throwing up. *smiles*
Does a person who is sick act normally and do normal things?
AS MUCH AS POSSIBLE. The best example that I can give of this is when I went on the cruise in February last year. I asked my best friend that we not talk about anything health related and that if at all possible I wanted to be known "not as the sick girl". I didn't want us to lie, but if at all possible I wanted a "break away". HONESTLY- it was the best week of the year. Yes, there were times of tears, but it was SUCH A BLESSING and I cried several times realizing that I could still hold conversations that had nothing to do with illness.
In the last couple of weeks I have realized something deeper in this whole situation. Beyond my defensive stance at the beginning and beyond what I mumbled about, I realized with startling reality that God had also abundantly answered a prayer that I started praying the first year I became housebound and bed bound. It wasn't a prayer that was easy to pray or one that I even knew the difficulty of living what I was praying, but it was the cry of my heart:
"Thank you, Father, for these my friends. Thank you so much for these beautiful people, who are so very dear to me. Let my grief be mine alone. Anoint my countenance with the oil of joy, that none may ever feel embrassed to laugh in my presecence. May no joke or sharing of the ridiculous be stifled because I am there. Wrap me in the garment of praise, that I may not burden others with the heaviness of my grief."
(Darlene Diebler Rose)
The Lord has been so good in answering this prayer a thousand fold on this journey these past several years. He has anointed me with the oil of joy, that none have felt embarrassed to laugh in my presence and jokes and sharing of the ridiculous has abounded abundantly within my family and friends. There have been times of lots of tears and grief but I seen in so many ways the way that the Lord has wrapped this journey in the garment of praise, day after day, moment after moment on this journey.
Perhaps it doesn't "look" like I "act" sick, but I can assure you behind the scenes the only reason for that would be God. Him alone. He has been so merciful on this journey and I am so grateful for His love and the way that He has carried me each step of the way. (Psalm 68:19) Perhaps, like so many others, that is the only answer that I can give for the "But you don't ACT sick" statements. Because I know for sure that the Lord is close to the brokenhearted.
I see it every single day.
"Thank you, Father, for these my friends. Thank you so much for these beautiful people, who are so very dear to me. Let my grief be mine alone. Anoint my countenance with the oil of joy, that none may ever feel embrassed to laugh in my presecence. May no joke or sharing of the ridiculous be stifled because I am there. Wrap me in the garment of praise, that I may not burden others with the heaviness of my grief."
(Darlene Diebler Rose)
The Lord has been so good in answering this prayer a thousand fold on this journey these past several years. He has anointed me with the oil of joy, that none have felt embarrassed to laugh in my presence and jokes and sharing of the ridiculous has abounded abundantly within my family and friends. There have been times of lots of tears and grief but I seen in so many ways the way that the Lord has wrapped this journey in the garment of praise, day after day, moment after moment on this journey.
Perhaps it doesn't "look" like I "act" sick, but I can assure you behind the scenes the only reason for that would be God. Him alone. He has been so merciful on this journey and I am so grateful for His love and the way that He has carried me each step of the way. (Psalm 68:19) Perhaps, like so many others, that is the only answer that I can give for the "But you don't ACT sick" statements. Because I know for sure that the Lord is close to the brokenhearted.
I see it every single day.
Y'all I am so humbled and excited to share that a couple of weeks ago I received my first review for my book, "Praying through Lyme Disease" and guess what? It was a "5 star review"! I was so touched, humbled, and overwhelmed by the kind words that the reviewer left:
"I bought 2 and plan to get a few more as gifts. This is a book that you can't find anywhere else. With Lyme's Disease becoming more of an issue every year, many have been discouraged and left hopeless with this disease that they have to live with if they didn't get help right away from the beginning. Rebecca has put her heart and soul into this book and it obviously shows. Sharing from her heart and experiences is something every person affected with Lyme's can understand. I would encourage you to buy this affordable book not just for yourself, but for someone else."
These words meant so very much to my little heart because this is such an answer to my prayers!! THANK YOU so much to ALL of you that have purchased the book, have sent me encouraging emails, and have passed this book on to others fighting Lyme Disease. If you have read the book would you mind writing a review? As a new author this type of thing helps spread the word to others! Thank you so much!!
Most importantly, my prayer is that every person reading this book will be drawn closer to the heart of God. Would you please join me in that prayer? Thank you again! If you are looking to purchase the book you can buy it where books are sold and find it on Amazon HERE.
Thank you again! Happy Tuesday Friends!
When I was growing up my parents consistently played christian music including Psalty, Colby, and GT and the Halo Express. Each of these records and tapes (yes, I lived in the "olden age" *smiles*) were filled with scriptural messages and truth and even had scripture put to song. I can still remember almost every song on each record/tape and one of those songs on the Psalty tape (It was the one where they went camping.. I believe "Psalty 5" *smiles*) had a song entitled, "climbing my mountain". The lyrics, although they are almost 30 years old still speak to my little heart:
"When something seems to hard to handle,too big to conquer, too far away to touch, when all your dreams begin to shatter, and deep inside you you're hurting, oh, so much, That's when it's time to say
(Chorus) I'm climbing my mountain step by step, I'm climbing my mountain day by day, I'm climbing my mountain all the way, I'm climbing my mountain, I'm gonna make it. One step at a time, One step at a time, One step at a time with Jesus by my side, One step at a time, One step at a time, I'm climbing my mountain one step at a time.
Even though you might grow weary Don't be discouraged, in your weakness God is strong, Remember this, He'll never leave you, He won't forsake you, He's your strength and He's your song So sing and start to say... "
And as the song so adequately states, that is exactly what I am doing. I am climbing my mountain step by step, day by day. If we are connected on instagram then you know that I had a phone appointment with my Lyme Doctor last week. This appointment had to be moved up from the original scheduled by nearly two weeks. Basically to make a very long story short (and because I have chosen not to share all of the details on this blog) when I had to suddenly stop all of my medication in early November "cold turkey" I have been struggling with one significant issue after another. This is not uncommon with Lymies, but still have been a very difficult couple of months.
People have asked me if things are "worse" and that is hard to answer because while I have struggled a lot, I am still MUCH better than a year ago. (As with everything with Lyme, or any serious illness, things are complicated.) Unfortunately though issues with my entire digestive system have started to re-surface (which is very normal after only the first round of treatment) and as I tried introducing different necessary drugs and medications for different health complications, I have suffered a relapse.
The main focus (in early December) was to be on one of the co-infections of Lyme that I have, my environmental illness, and two other health situations that I am dealing with, and continue with detoxification. (These drugs were in addition to the alternative supplements and herbs that I am constantly adding in as I am treating all of my health issues with a combined approach.) Unfortunately though when I started one of the new medications for the co-infection I had a severe reaction (thankfully not hospital visit worthy but still severe) and I crashed at the beginning of December hard. After five days of trying to push through and not being able to keep appropriate amounts of food and water in me consistently I was back to square one and needing to stop all medication again. At the same time, my joint pain (which is consistently at an 8 out of 10) started to flare to about a 15 out of 10 and I was absolutely miserable. (Thankfully, as many of you have been praying and waiting to hear, the new supplements that my doctors office gave me has helped to control this joint pain back down to about an 8. THANK YOU so much for your prayers!) In addition to these things there were some additional, personal side affects, symptoms, and issues that honestly made the last eight weeks extremely painful, difficulty, and to be honest ... discouraging.
(I want to take a moment to insert in here that my Lyme doctor is amazing. TRULY a gift from the Lord. The office staff are amazing and my doctor is truly a miracle gift to me in this very long journey. In such a long and difficult journey in dealing with Lyme patients you have to really be a unique and gifted doctor ... to come up with a plan to beat this awful disease, help keep your patients encouraged, and to deal with the stress of dealing with critically ill patients everyday without getting burned out. Such an amazing gift from the Lord and my favorite answer to prayer from 2014!)
With this background you can probably see and understand why I approached my appointment on Monday with a tad bit of anxiety and a whole lot of curiosity to hear what my doctor would say the plan would be for the coming weeks. And as always on this journey things have shifted a little bit but as my doctor said so eloquently, "we let go of what we can't control and we do the best with what we can". For this planner addict these are difficult words to hear but at the same time they bring a freedom and with them a truth from scripture about "not worrying about tomorrow".
At this point we have decided to work solely on the Lyme co-infection that has settled in my stomach and I have started back on one of the drugs that I was on this summer. My doctor is hopeful that this round of this treatment will help kill a couple of more "layers" of Lyme. This drug isn't fun at all but I am hopeful that I will be able to semi tolerate it and we are moving forward. To be honest... its been... difficult already and we are only a few days in. We are praying that after the first couple of weeks I will be able to do a little bit better, but in the meantime I would covet prayer. She is also putting me on an additional herb that will help deal with some of the Lyme cysts that are causing me so much trouble. We are praying that I can tolerate this new herb and are hopeful that it will help start to break apart those cysts. Finally we are adding a couple of more alternative supplements that will continue to help fight some of my other health issues and and continue to help strength my immune system.
And Finally... we will be adding a very high dosage (and expensive) drug to the regime. This medication (with insurance) is approximately 3,000 a month (yes, you read that correctly) but we are prayerfully hopeful that I will be able to receive assistance. I would also covet prayers for additional financial resources to come in the next few weeks as this is a very tight financial time. THANK YOU so much to Katie & Ethan for your generous donation in December- it was such an answer to prayer!! (Some of you continue to ask how you can give- I am so humbly grateful- and the easiest way is to simply donate to the "Go Fund me Page" which is located below or on the left side of the blog.)
As I think back to the song that I mentioned at the beginning of this post, I feel a mixture of emotions. Sometimes it seems like I am talking about someone else's life as I talk about "plans and drugs and medications" but I know that the Lord is leading me and guiding me one step at a time as we climb this mountain. Sometimes it is hard not to think or worry or be concerned about the future or have questions or have a wide range of emotions BUT we only have today. So step by step and day by day I continue to climb my mountain friends.
Thank you so much for all of your prayers for this continued journey and for your sweet support. Your love, prayers, and support has made all of the difference in this journey.
With Love,
Happy Saturday friends! Today I am excited to share with y'all my personal altered planner for this upcoming year. It was so much fun to create, pray through the upcoming year, and be excited for all that God has in store! I hope that you have had a wonderful first few days of this new year and that you have a wonderful weekend! Enjoy the pictures!
Happy New Years friends!! This is the second year that I have ever joined in on the "pick a word for the year train". I am honestly not sure why I didn't do this years ago because it is such a lovely and sweet idea. Last year as I prayed about a word for the year 2014 (and chose Valor) it really allowed me time to focus, think and pray about the coming year. As I did the same this year, I felt again that there were several "themes" that kept coming to mind but they could all be summed up by an over-arching word:
Mettle Definition:
(1) a person's ability to cope well with difficulties or to face a demanding situation in a spirited and resilient way
(2) the ability to meet a challenge or persevere under demanding circumstances; determination or resolve
(2) the ability to meet a challenge or persevere under demanding circumstances; determination or resolve
(3) vigor and strength of spirit or temperament
(4) quality of temperament or disposition
Granted, it is not a word that is "common" or used everyday but the definitions sum up exactly what I pray for for this coming year. This battle for my health continues to be very difficult and demanding and I want to meet this challenge with a spirited and resilient way. I want to persevere under these demanding circumstances and that is taking all of my determination and resolve. As I lean on the Lord's strength to conquer the "unknowns" of what lies ahead with my health, healing, relationships, my professional life, my shop, my writing, and some personal circumstances I can rest fully in the knowledge that His strength is going to give me the determination to face these demanding and difficult situations. Finally, I want to be a good soldier for the Lord in this difficult situation and have the quality of temperament to face the pain of illness, the strength to believe in the impossible, and the lovely peace that comes from trusting a Sovereign God fully without fear.
The word "mettle" was first used in the 1500's and came to mean, "the stuff one is made of, one's character". When I read this I knew immediately it was the word for the year. There is nothing that will show you what you are made of more than losing your independence in your early thirties and becoming primarily housebound at such a young age when others are off "chasing their dreams". Sometimes, and I am embarrassed to admit this, but its not all "rosy" and lovely over here. (I know, I know, it is impossible to imagine that I wouldn't be perfect to live with all of the time. *sarcastic smiles*) This season and journey that the Lord has me on has shown me in a million different ways how incredibly sinful and selfish I can be. It is definitely something that I spend a lot of time in prayer about. And the life I want to live, my life fully surrendered for the Lord, is a life that is filled with "strength of character" that reflects HIM in all circumstances, even during the difficult and painful times.
I am in the middle of re-reading "Evidence Not Seen" (I think I have read this book literally 100 times!!) and it has impressed upon my heart the impact of living a life with mettle. Mettle whose strength is not in demanding our own rights or ability to cope for ourselves, but for the Lord. Mettle that touches the hearts of others for the glory of God. Mettle is having the spirit to believe that no matter the circumstances (or the evidence) God is in control and is still at work. No matter what the situations that arise in the coming year I want to live with mettle.
Granted, it is not a word that is "common" or used everyday but the definitions sum up exactly what I pray for for this coming year. This battle for my health continues to be very difficult and demanding and I want to meet this challenge with a spirited and resilient way. I want to persevere under these demanding circumstances and that is taking all of my determination and resolve. As I lean on the Lord's strength to conquer the "unknowns" of what lies ahead with my health, healing, relationships, my professional life, my shop, my writing, and some personal circumstances I can rest fully in the knowledge that His strength is going to give me the determination to face these demanding and difficult situations. Finally, I want to be a good soldier for the Lord in this difficult situation and have the quality of temperament to face the pain of illness, the strength to believe in the impossible, and the lovely peace that comes from trusting a Sovereign God fully without fear.
The word "mettle" was first used in the 1500's and came to mean, "the stuff one is made of, one's character". When I read this I knew immediately it was the word for the year. There is nothing that will show you what you are made of more than losing your independence in your early thirties and becoming primarily housebound at such a young age when others are off "chasing their dreams". Sometimes, and I am embarrassed to admit this, but its not all "rosy" and lovely over here. (I know, I know, it is impossible to imagine that I wouldn't be perfect to live with all of the time. *sarcastic smiles*) This season and journey that the Lord has me on has shown me in a million different ways how incredibly sinful and selfish I can be. It is definitely something that I spend a lot of time in prayer about. And the life I want to live, my life fully surrendered for the Lord, is a life that is filled with "strength of character" that reflects HIM in all circumstances, even during the difficult and painful times.
I am in the middle of re-reading "Evidence Not Seen" (I think I have read this book literally 100 times!!) and it has impressed upon my heart the impact of living a life with mettle. Mettle whose strength is not in demanding our own rights or ability to cope for ourselves, but for the Lord. Mettle that touches the hearts of others for the glory of God. Mettle is having the spirit to believe that no matter the circumstances (or the evidence) God is in control and is still at work. No matter what the situations that arise in the coming year I want to live with mettle.
So that is my "word" for the year friends! Did y'all pick a "word" for this year? I would love to hear about it and what the significance is to you!! Happy January 1st!!
Subscribe to:
Posts (Atom)
