Showing posts with label THT: The Chronicittles Stories. Show all posts
Showing posts with label THT: The Chronicittles Stories. Show all posts
1. Be Upfront and Clear About Your Limitations
No matter the response you receive make sure that you are upfront and clear about what your limitations are with your illness. To be honest this was a hard thing for me to learn at the beginning of this journey as my heart wanted to go and live like I had been before I got sick. Unfortunately when I wasn't clear everything ended up more of a mess and usually resulted in me crying. Learning to be upfront and clear about my limitations helped me to put down boundary lines that have truly helped me heal. I know that sometimes this can be hard to do, especially if you don't receive the support you hope to, but continue to be firm but kind with your limitations. I promise that overtime this is one of the best things you can do to live well with a chronic illness.
2. Accept Help.
3. Share specific Things that Others Can Help You With
The difficult thing with illness is that often times loved ones truly don't know how they can specifically help someone in a health crisis. Find ways to lovingly share specifically what your loved ones can do. A friend of mine who struggles with extreme back pain due to a failed surgery found that asking her for help with her laundry saved her countless days in bed after she attempts to do it. Personally for me I have been so grateful for my dad helping me with changing Scamper's litter. It might be something small or it may be something bigger on a routine basis, but think through ways that others can help and then as mentioned in #2, accept the help.
4. Be Vulnerable With Your Tribe
It can be hard to be vulnerable when you are feeling so sick and tired with pain and sickness. I know that a lot of us want to put on a brave face with those that we encounter, but having the courage to be vulnerable can be a life-changing situation for living well with a chronic illness. Having this courage can help prevent a lot of awkward issues from occurring during this journey. Take the leap of faith and express your heart.
5. Be Patient With Explaining The Health Lingo
As patients we become so familiar with spouting off all of the different terms, nicknames, meds, supplements, cell interaction, cell pathways, symptoms, etc. that it can be hard to remember that our friends and family can be left feeling overwhelmed and dizzy by the amount of things we are talking about. Even though our lives may revolve around the sickness aspect, theirs revolve around us. They want to understand and they do care, but we may need to extend some patience as we have to explain something again and again. Be patient and understand that they are doing the best they can.
6. Be the Best Friend and Family Member that You Can Be.
It can be hard to keep up with all of the important dates in people's lives since you became ill. Sometimes we are just trying to cope with the day let alone remember to purchase a card or a gift for someone. Despite the way that illness has changed you fight to still be the best friend that you can be. This may look different than before you got sick, but still take the time to connect with others, make phone calls, send cards, and deepen your friendships. Stay connected in every way possible to your tribe. Honestly, I haven't done the best job of this over the years. Maybe you feel the same way. It is never to late to re-start. Take the time today to make a phone call or write a letter. I promise you will be glad you did.
7. Do the Best You Can to Attend Events
You may not be able to attend them all or even a handful, but try to attend all of the important events that you can. Even if you don't feel or look the best, people will be thrilled to see you and it is great for your life.
8. Understand That This is a Season
There will be beautiful days again. Hold on to the hope that there are far better things ahead than we could ever imagine.
9. Acceptance
For every single person struggling with a chronic illness this is going to mean something different, but Amy Carmichael was right: "in acceptance lies peace".
10. Let Friends Go
Let the people go who are not willing to walk this journey with you. Let them go freely and give your blessing. Forgive and live in joy. Wish them well, let go of the bitterness, and walk the road in front of you with dignity. Stick to the Code. (Yes, I did feel like I was quoting the Pirates of the Caribbean saying that. hahaha, but seriously, Stick to the Code,
11. Find Joy in Every Day.
There is joy to be found in every single day if we look for it. Look for it. Search it out. Fight for it. You will never regret finding joy.
"This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company."
When I first was diagnosed with Advanced Late Stage Lyme Disease I had no idea how much in my life would change. So much of it already had changed (losing my independence, moving back home to my parents house, having to take time off of teaching, etc.) and my days had become filled with medical appointment after medical appointment and I was literally struggling to just take one moment at a time. In the midst of all of this I didn't realize how many other things that I used to do on a daily and ordinary basis all of a sudden shifted and changed too.
When I was healthy I didn't think about having a regular sleep schedule, getting up in the morning, showering, washing my hair, drying my hair, putting on make up, going to work, going to the grocery store (and other stores like Target or clothes shopping), making my meals, grading papers, going for a walk or run, getting my hair cut, eyebrows waxed, etc all happening in one day. I didn't think about all of the energy that each of these things took to just "complete" a day. But I definitely do now.
Those ordinary and routine things and tasks that people tend to do everyday without needing assistance (things that we often refer and think of as things for daily living) are often times extremely demanding for a person living with a Chronic Illness. Many times when people think about someone living with a disease they tend to focus on the medical aspects of coping with our diseases, and unfortunately there is a lot of times that things go unspoken about. The daily life things that encompass so much of who we are, or who you think you are and then are challenged to re-examine these beliefs.
I have learned a hard but important lesson in this journey. At first I felt like I was "sacrificing" who I was in accepting help with some of my daily routines and needs. I would try to "push through" even though so many people were asking how they could help. Unfortunately by denying their help I was often left more in pain, more exhausted, and then left without being able to enjoy my time with my loved ones like I wanted to do.
So I learned to accept help. I am so grateful for loved ones who help me with cooking my meals and now daily celebrate my accomplishments of now being able to do a lot of my own cooking (I love to cook) even if it is done sitting down a lot of the time. *smiles* I say a simple "thank you" to loved ones who help me with drying my hair so that I can spend the time coming to the table later on and enjoying their company. I have learned to let go of what I thought made me "more beautiful" by applying make up and doing my hair everyday and focus more on who I am and my loved ones. I have learned that I am a "girly-girl" to my core, but have also learned what being a woman is really about.
Back in September when I went cruising I remember saying to a woman on the trip on one of the last days of the cruise (I was beyond exhausted at that point) that I was going to skip doing make up in the morning because I wanted to spend the energy meeting up with friends instead. Her response was to belittle this decision saying that she would never be seen in public without makeup and that her mama raised her to "have pride in her looks" and she even went as far as to lift her eyes and say, "are you sure about that?". I admit that I cried because the implication was that I didn't have pride and that I wasn't pretty enough to be seen in public without make-up. As time continued this fall and I fought for my health and my life in a new and extreme way I see how far I have truly come - not only in this fight for my health but in my heart. I have learned that I don't need to do anything physically in order to leave my house or engage with those who are loved ones. True friends have embraced me even when my hair is not perfectly groomed or I didn't put on make up for our face-timing. Loved ones have sweetly held my hand and held my heart as I have been incredibly sick and able to offer nothing, especially my looks. This journey has taught me a great lesson and I have learned a great prize in this journey. What is on the inside is the most important.
Each day as I do things that most people find are easy and ordinary (cooking a meal, taking a shower, putting my contacts in, doing my make up, walking, etc.) I celebrate. I celebrate how far I have come in healing. I celebrate learning more about myself in this journey and becoming the woman I want to be - especially in my heart. I celebrate treasuring every moment with those that I love because I have had to "sacrifice" some of what I thought was important for what really is. I celebrate love. I celebrate those who unlike that woman on the cruise aren't concerned with my appearance but love me for being me. I celebrate these accomplishments of the "ordinary" while living with a chronic illness because I know how big the ordinary actually is.
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Want to read more and hear more stories from other chronic illness bloggers? Check out Self Care Catalysts (http://www.selfcarecatalysts.
Thursday Health Thoughts: Doctors out of State/Country Series- Part One:Making the Decision to go out of state/country
May 29, 2014
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
Happy Thursday y'all!! I am so excited to kick off this new six part series on Thursdays dealing with topics related to seeing doctors out of state or country. In the following weeks I will be talking about this subject (and sharing some of my own experiences) and am excited to have several guest bloggers who have chosen this option for various reasons and are going to share their experiences too! Here is the list of the topics for the coming weeks:
June 5th- Part Two- How to find a doctor (general)
June 12th- Guest Blogger- Katie from Always, Katie
So lets get started! Today I want to talk about making the decision to go out of state or country to see a doctor. (Side note: No offense to any of my doctors but NONE of them have ever looked like Dr. Avery from Grey's Anatomy!*smiles*But this single gal can dream right? Either way I hope it brings a smile to your face! *smiles*)
So what are the reasons for making the decision to go out of state or country for your illness? Here are just a few:
(one) Sometimes in your health journey you come to the point where you realize that due to where you live you might not have the best option for a doctor for your particular disease or illness. I think that to a lot of people who are usually healthy this never even crosses their radar. Honestly, it would never have crossed mine if I hadn't been sick. Many people (including myself) have done research and have found that there local GP's (general practitioner's), hospitals, surgeon's, etc. are very qualified and competent people. And they typically are. But the reality is that for many people, including myself, staying local to get well was not an option.
When I was first diagnosed with Lyme Disease I researched thoroughly (and visited) the local hospitals, doctors, specialists (in infectious disease), etc. Unfortunately I kept hearing the same thing: "Lyme Disease doesn't exist in the south". (I should state that my local paper just this week stated that ticks have now traveled south this year. Do NOT even get me started on this.) So in my case I wasn't just fighting a disease alone I was fighting the culture's general thought that while we live near the Smokey Mountains and while ticks can destroy a person's life, they are also smart enough to not cross state borders, be attached to travelers who have hiked the Appalachian trail, been attached to animals that have traveled south, etc. (Yes, I am being completely sarcastic.) But just like my battle with endometriosis I had a choice. I could use my limited energy on being angry and irritated or I could put that little energy into finding a doctor to help me get well. I chose the later and I would recommend anyone to do so also.
As I searched for a doctor I did try to remain "somewhat local". I tried to make an appointment at hospitals in my "area" (within 250 miles) and even called around to different doctors within my state but hours away. I finally expanded my search to include all of the states around me (which included Duke Hospital). While I had been initially seen at Duke, my diagnosis came from a different practitioner and I had to make a new patient appointment. Guess what? I still have that appointment at Duke... for 2015!!! After THIRTY-THREE (yes, you read that correctly) doctors in my city told me that they couldn't help me, the news that I would have to wait two more years for an appointment at Duke, and major hospitals in my surrounding area telling me they had no answers I expanded my search across the United States.
Some people called it desperate. Others thought I was insane. Others told me that I didn't have enough "faith" that God could heal me where I was at. And there were tons of other comments. But as I researched and called 78 doctors who were treating Lyme across the United States I became even more sure that this was the right decision. As a believer I was praying for wisdom and I do believe that going out to California last year for treatment saved my life. The reality was that the doctors in my local area were just not equipped to deal with the disease that I am fighting.
(two) Sometimes in your health journey you come to the point where need to find a specialist. While you may have the options and opportunities to find a specialist in your area, you may decide that you need to find a specialist. The reality is that "specialists" just don't exist in every single town or state (or even in the country!). Due to this you might, after researching decide that you need to add a specialist into the equation - whether that is a long-term solution for the foreseeable future (as mine is) or just to see a couple of times in your health journey. Don't be afraid to "think outside of the box". (I have permission to share the following story.) I had a friend who was desperately trying to find answers to her infertility issues. After traveling to several different states across America and finding no help she was at a complete loss of what to do. "Randomly" she came across a book in a used book store while she was on vacation written by a doctor who runs a health and fertility clinic in England. After reading the book, doing a ton of different research, having several skype conversations with the doctor, and talking to former patients she and her husband went over to England. Two trips and seven years later she and her husband are now the proud parents of four kiddos. As she has often said to me, "I saw tons of specialists in my city, state, and country. But the key was in England where a lady understood my specific history and also had training that was done in a university outside of the USA. She had been taught a completely different approach then what my specialists here in America were saying. If I had never taken the risk and flown to England I would never have realized that there is a whole big world out there with tons of different thoughts and ideas."
(three) Sometimes in your health journey you come to the point where need to find someone who has had unique training. Similar to what my friend shared above, you sometimes need to find someone who hasn't been trained at the University of __________ for their undergrad and medical school. Does this make them less qualified? ABSOLUTELY not. Does this mean that they are not someone I would go to? ABSOLUTELY not. But sometimes you need to know more than just your particular state or countries knowledge. Several years ago when I was diagnosed with CFS & Fibromyalgia I went to one of the leading health centers on Chronic Fatigue and Fibromyalgia for treatment. (I was blessed to have one of the six centers in the US in my particular city at the time.) I definitely am grateful for everything that happened there and in many ways the $7,000 that I ended up paying was worth every penny. BUT as I moved home last year and sought additional answers as my health continued to fail I needed help beyond what I was receiving. I read more and more books on CFS and Fibromyalgia and it wasn't until I came across a book last year from a doctor in Canada written in 2010 that I learned some new things that had never been told to me before! This doctor (and some of her staff) have traveled WORLD WIDE to conferences, doctors clinics, wellness institutes, etc. and have discovered some incredible ideas. I called them up, had an appointment with one of the clinics (over the phone) and honestly saw several of my CFS/Fibro symptoms disappearing over the course of a few short weeks. These same symptoms hadn't disappeared in my entire treatment over 9 months at the clinic. And get this? The one thing that helped the most was a tip that the doctor had learned at a conference in Jordan, from a "tribal doctor" from Africa! WOW! This unique training has helped me IMMEASURABLY even as I fight my other illnesses.
(four)Sometimes in your health journey you need to have an opinion of someone "out of the picture". Over the years I have had numerous friends travel to a "major" hospital (and I myself have done so too) such as Mayo, MD Anderson, Mass General, John Hopkins, etc. The truth is that some of these research hospitals have equipment or tests or the latest research that might help your situation. You definitely deserve a second (or third or 50th!) opinion and don't be afraid to choose someone completely out of the picture.
(five) Sometimes in your health journey you need to have surgery. I have had several surgeries and two of them have been local to where I live and two were out of state. If you read my endometriosis story then you know my experience with that was absolutely wonderful. I have traveled to a doctor out of state for surgery and have had several friends who have done so. NONE of us regrets it. Sometimes this is an excellent option so don't be afraid to think "big spectrum" on this.
Thanks so much for reading y'all! I hope that this series will be a help to you or a friend! Next Thursday I will be talking about "how to go about finding a doctor out of state or country"! Happy Thursday y'all!
{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
This is a subject that I personally really felt inept with in this whole health journey. I, like many of the people that I encounter, never dreamed that I would be 32 years old and learning about temporary handicap parking tags. But last fall as my health started to rapidly decline one of my doctors suggested to me that I consider obtaining a temporary handicap tag. At the time I was struggling to walk down the hallway in my parents house and had no energy to park a car and walk from what used to be a short distance to a store a far off parking spot let alone go inside a store and walk around. I balked at her suggestion and pushed it from my mind, while I continued to pray for open spots near the front of the store, doctors office, hospital, etc. Within a few months it quickly became evident that this was in fact a need and my pride would need to be put to the side.
For me (and many other young people who apply for a temporary handicap parking tag) there is a stigma that goes along with this whole situation. PLEASE understand that it is not that there is a stigma with being disabled, but instead for a chronicittle (a person struggling with illness in their 20s-40s) it truly means that you have to acknowledge that the life that you knew for a long time or for a "short while" is nothing like the one that you now know.
Honestly, I cried throughout the entire process, including in the courthouse as I obtained, signed, and paid for my temporary tag. (And no, I did not just cry the first time- I have cried the two subsequent times also). For a gal who loved to get a little bit of "extra exercise" in by parking far out from her destination (extra steps and all that *smiles*) this felt like it was "one more loss" in this crazy illness world. And honestly, there are still times that I sigh as I acknowledge that I need to park close, put up my temporary tag, and politely smile at the people looking suspiciously at a young woman needing the space.
Yes, I have been asked accused of "milking the system" to which I sweetly reply that I have _____ and list all of the illnesses I am struggling with. (By that time the person is tired of the conversation *hahaha* and politely smiles and walks quickly off!) One man who came charging across the parking lot yelling "miss" at me and started to screamthat "it was people like me that hurt the handicap population in general" (no, I still have no idea what he was talking about!) literally kept yelling at me that he wanted my tag number to call and issue a formal complaint. His reasoning? I didn't have a wheelchair. As I looked back at him and quietly explained that I had several diseases, I unfortunately (and I PROMISE it was not on purpose!!) became violently ill and ended up throwing up on his feet. Embarrassed I backed up towards my car in tears and babbled about how sorry I was. I quickly got in my car and left the parking lot as he ran after me yelling, "I'm sorry! I'm sorry". Needless to say I can now laugh about this story but it took me quite a few months to do so!
But in the midst of all of that drama and emotion I did recognize and over time have come to accept that this is a necessary reality for me at this moment. I really wish that I would have understood the process a lot earlier because I really do think that knowledge is power. I hope that this will help you (or a friend or family member) if you are needing a temporary handicap tag! (Please note that this information ONLY pertains to temporary tags!!)
1. If you are going to apply for a temporary tag you will need to have a doctor fill out their part of the application for almost every state. (Some states allow patients to bring in a notarized letter from their doctor or a non-notarized letter from their doctor but this is rare. Contact your local DMV or court house to find out what is acceptable in your state!)
2. You can pick up the application from the DMV office or print it off on-line from your states website. Make sure to read your states regulations carefully as to who is eligible for the tag. Generally the DMV website states that a disability would refer to one of the following:
"Lack full use of an arm or both arms. Cannot walk a certain number of feet without stopping to rest. This greatly varies by state. Missouri, for instance, limits it to 50 feet, while Texas uses 200 feet as its gauge. Cannot walk without the assistance of a cane, crutch, brace, prosthetic device, wheelchair, or another person. Have a cardiac condition that’s listed as Class III or Class IV in severity according to the American Heart Association. Cannot walk without the aid of portable oxygen. Have a visual acuity of 20/200 or less in the better eye with correcting lenses. Have a visual acuity of 20/200 but with a limited field of vision in which the widest diameter of the visual field subtends an angle of 20 degrees or less." This paragraphs information was found taken from HERE!
3. Research about where you will be able to turn in the application and pick up the tag. (For me it was done at our local county court house and only done on certain days.) Also find out what the fee is for the tag!
4. After you have picked up the application from the doctor you will need to go and wait for a turn to present the application, your licence, and any other documents that the court has requested. After it is approved then you will be given your new temporary tag.
1. While it is against the law for you to be discriminated against if you look healthy or are young also understand that you will need to show just cause of why you need to have a temporary tag. At the same time though don't be afraid to apply for a tag just because you have an "invisible illness". Talk to your doctor and consider obtaining a tag if you are in need!
2. Remember that this is a temporary tag and most states have the time limit for the tag set at 6 months (some as early as 4 months!). Make sure to watch the date carefully.
3. Most states will charge a fee for the tag. It varies state by state so make sure to do your research ahead of time.
4. You can use the tag in whatever car that you are in (or driving) whether it is owned by you or you are renting a car. The tag is allowing you to transfer your disabled parking privileges from vehicle to vehicle. (This probably does not need to be said but...remember that the person who the temporary tag was registered to must be in the car to make it legal. If you use someone else's tag this is illegal and then you can be fined.)
5. I was shocked to realize that while it is legal for you to use a temporary tag in a state other than your issuing state (you do not need to apply for a temporary tag in every state that you enter) that state does not have to enter the temporary tag. Always make sure to carry a doctors note (I carry the same one used to apply for the card) with you in case a police officer questions you. I have never had a problem with this but if you are concerned about anything call ahead to the DMV in the state that you are traveling to double check.
6. Make sure to remember to present your handicap tag at hospitals, wellness institutes, and some doctors offices to obtain free valet parking. This to me has been extremely helpful and beneficial. My doctors offices range from big city areas to remote country roads (no joke!) I once added up that if I had to pay for parking for all of the hospitals, specialists, and doctors offices that I have been to I would have spent over $1,000 in just 11 months! WOW!! Thankfully almost all of these places provide complimentary free parking to those "guests" that need to use valet parking without additional cost.
7. Understand that when traveling some people are going to be accommodating and helpful while others are going to look at you like you are trying to take the "easy road". I had a airport employee inform me that I did not need the extra assistance but have had rental car agencies go beyond their job descriptions to help accommodate without asking any questions. Be kind but be firm and state exactly what you need help with.
8. Understand that you might get a lot of suspicious looks (or a crazy man yelling at you from across the parking lot) and let it go. (I could start quoting the "frozen movie song" right here but you get my point. *smiles*)
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I hope this helps sweet friends! Anyone else have any tips to share that has helped you? In two weeks I am going to be starting an eight-part "Thursday Health Thoughts" series on working with doctors from out of state! Can't wait to share with y'all some things I have learned and learn from y'all too!!
{Chronicittles Disclaimer: Those that are sharing their personal chronicittles stories are sharing just that- their stories. They are people that are struggling {or have struggled} with the ins and outs of a chronic illness and have found ways of surviving and thriving. Their stories are meant to encourage, inspire, and challenge those that are struggling but are in no way meant to be a physician's advice. Please be aware that this is a space for learning and encouraging and not a space that will allow critical comments of any persons story. A reader should consult with his/her physician regarding any information gleaned from these stories. Thank you so much for reading!}
It's with great pleasure that I share with you Lauren (from Simply Free) and her chronicittles story! Even though I have never met her "in person" I am honored to call her a friend! She is truly inspiring and I am excited to have her share her story!
*all pictures below are Lauren's*
*all pictures below are Lauren's*
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For most of my life I was an incredible
active individual. I was in great shape and health problems were never of
concern. Until I was 10 years old. I went to get a routine physical for a
sports camp and was told I might drop dead at any moment. I was told my body
would fail me and that the heart murmur I had in addition to what the doctor speculated
was Lou Gehrig’s Disease would only complicate things and was certain of my
imminent demise at any moment. After several rounds of testing over the course
of the next eight years coupled with various other “mystery” ailments, we came
to find that while, yes I had an irregular heart murmur, I did not have ALS, but that I had Mitral
Valve Prolapse, a very treatable and non life-threatening heart condition.
All of this to say, that through those eight years or trying to figure out what
was wrong, I learned my body and what was “normal” for me. I knew how to
identify each abnormality in my body; for fear that it was something related to
my heart that might need immediate attention.
A little over a year ago, I was not feeling
that “normal”. I was constantly tired; my throat felt like something was
continuously caught in it, and I had gained a few pounds in a few months.
Attributing it all merely to a new birth control and the fact that my husband
had just gotten over a nasty cold, I wasn’t all too worried, but was certainly
keeping an eye on things. And that’s when we discovered I had a large nodular
on my neck while he was giving me a simple back massage. So I decided it was
time to go the doctor, trying not to let my mind wander, convincing myself my
lymph nodes were inflamed due to a cold.
Not thinking it was so obvious, he noticed
the nodular right away and sent me for a thyroid ultrasound. And then the fear
set in. After they determined the mass was a tumor (2in x 1in x 1in in size
contained to my thyroid), they sent me for a guided ultrasound and took a
biopsy of the cells. The results from that showed that from the cells on the
inside of the tumor (they could only test the inside and not the outside with
the biopsy), the inside of it and those cells they took are atypical and that
the inside of the tumor could be benign, but that the outside could be follicular
cancer of the thyroid. So many “could bes”, so
many unknowns.
After much researching, we skipped the
endocrinologist and went straight to the surgeon, a friend of the family. I
meet with the Surgical Oncologist at the Kirklin Clinic in Birmingham
All that to be said, I had surgery (right
thyroid lobectomy) on April 4th at UABto remove the mass. I was 26. The thought
of cancer seemed unfathomable, but I had already lost two college friends to
the cruel word, and the thought of what may lie ahead both terrified and
challenged me. I knew I wasn’t fighting this alone.
During the surgery, he removed the right
lobe & they didn't find anything else wrong with my lymph nodes or anything
so that was great! They wanted to test the mass (tumor is such a harsh word)
further, and if they found after testing that it was malignant, then I would have
had to go back and have another surgery to remove the other part of my thyroid
and have meds to take daily. However, if they found that it was benign, I
wouldn't even have to take pills. I was left with this uncertainty after
surgery while trying to recover with a sizable incision wound on my neck, as
well as stiffness, soreness and pain in my neck and chest. I remained
home from work for three weeks to heal, and spent any time outside wrapped in a
scarf despite the blazing heat of Coastal Alabama. It was certainly a better
alternative to the incredulous glances of strangers who passed by,
contemplating my ghastly wound between my collar bones, wondering if I had been
attacked and held at knife point.
This was somewhat of a process trying to
find answers and waiting for results, but it was quite an encouraging one in
actuality. Everyone at UAB was just incredible from the ladies at admission, to
the nurses, techs, and all of the surgical team. It really was a great
overall experience in regards at the hospital given the situation and I couldn't
have asked for anything better. We were bathed in prayer and surrounded by so
many wonderful friends and family both at the hospital & from far away.
And having my sweet husband by my side through it all has been such a
blessing. He truly has been the embodiment of comfort and love and has
just been the most incredible man through this all. We were (and continue to
be) confident in the Lord's plans and trust fully in His provision, comfort and
peace.
A few days after the surgery, we received
news that it was benign. Benign. Such a beautiful word. And while the potential
for the other side of my thyroid to develop a similar tumor, and this process
could be repeated down the road, or that somewhere else my body my turn against
me, I am prepared. And for at this moment, I am cancer free. Testifying to His
providence, and to His healing.
Any helpful thoughts, suggestions, or encouragement that you would pass on to others:
After finding out what was wrong, the question I had been
getting is one of concern. Not only for my physical well being especially
now that I am out of the hospital, but also for my emotional state. With
everything that had been going on, my general response had been a generic one
since I had been filled with such a myriad of emotions that have been rather
difficult to voice. I can however say that in the midst of all those
feelings, my answer to the question “So,
how are you feeling?” could
be simply summed into one word. Blessed. Completely loved, taken care of, and
inexplicably comforted. Curious of course; wanting answers and learning
patience in gathering them. Terrified quite honestly; I had no idea what to
expect before the surgery, and even through the recovery process there were
still moments of fear that came upon me. And large amounts of pain, naturally.
But anger, not at all. Being angry for this experience would lessen the value
of what the Lord had been teaching already me through it all. Especially when
it came to love and comfort. To be surrounded by such amazing friends and
family that not only expressed their care for me with such incredibly sweet
emails/letters and silly text messages/pictures, but ones who have acted on
that by keeping us busy with dinners, events, and outings to show their support
as well. To have a husband who not only had been by my side for countless
doctor’s appointments, but one who has embodied the very meaning of unfailing
love through that seeming time of “worse” by holding me close and never ceasing
to show how much he cares for me even with the most gentle kiss of the forehead
when I needed it most. I am simply just incredibly blessed.
Any resources (websites, books, etc.) that you would suggest:
This article was of particular comfort to me that I
was not alone in what I was feeling:
Want to connect with Lauren? You can find her here:
Twitter: https://twitter.com/simplyfree_blog
Facebook: https://www.facebook.com/simplyfreeblog
Lauren would love to here from you! You can email her at: simplyfreeblog@gmail.com
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Thank you so much Lauren for your encouragement and strength in sharing your story with us! Your courage inspires all of us!
Are you a "chronicittle" (someone in their 20s or 30s who is struggling with a chronic illness) and would like to share your story? If you would like to find out more information please feel free to email me at: caravansonnet@gmail.com!
Thank you so much Lauren for your encouragement and strength in sharing your story with us! Your courage inspires all of us!
Are you a "chronicittle" (someone in their 20s or 30s who is struggling with a chronic illness) and would like to share your story? If you would like to find out more information please feel free to email me at: caravansonnet@gmail.com!
{Chronicittles Disclaimer: Those that are sharing their personal chronicittles stories are sharing just that- their stories. They are people that are struggling {or have struggled} with the ins and outs of a chronic illness and have found ways of surviving and thriving. Their stories are meant to encourage, inspire, and challenge those that are struggling but are in no way meant to be a physician's advice. Please be aware that this is a space for learning and encouraging and not a space that will allow critical comments of any persons story. A reader should consult with his/her physician regarding any information gleaned from these stories. Thank you so much for reading!}
It's with great pleasure that I share with you Sarah's story! Even though I have never met her "in person" I am honored to call her a friend! She is truly inspiring and I am excited to have her share her story with y'all!
*all pictures in Sarah's post story are Sarah's *
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Hi everyone! My name is Sarah, and I blog over at Limited Space Organizing. Rebecca so kindly asked me if I would share my chronicittles story with y'all!
When I was a sophomore in college, I was diagnosed with Ulcerative Colitis. It is an autoimmune disease that I will have to deal with for the rest of my life. I have a very mild form of it (luckily), but basically I have ulcers in my colon/large intestine. I take medicine everyday to keep it under control, and will have to get colonoscopy's every three years for the rest of my life as long as it stays mild. I had a colonoscopy this past May, and they said everything looks normal, which means, the meds are working!
Being 24 years old and knowing that you have a disease is really hard to deal with. I know that there are people younger than me dealing with worse issues, but that doesn't mean this hasn't been hard to deal with. It's difficult being "young" and already having to take medication everyday. I always imagined I'd be A LOT older before that started. I often find myself asking, "Why me?", and "What did I do to deserve this?" Most people don't have to get their fist colonoscopy until they turn FIFTY years old! Although it has been four years since I've been diagnosed, I still haven't wrapped my head around it and accepted it. I have to make sure that I eat healthy and exercise, which is what we are supposed to do anyways, but I also need to watch my stress level and anxiety, which I have a real problem with. These could cause flare-ups, and an increase in medication, and I really don't want to do that. I feel like the first step in accepting this disease is announcing it, and stop holding it all in. I need to continue in prayer for God to heal my body and to keep this disease in a mild state.
Apparently, autoimmune diseases are hereditary and very common, and some are worse than others. This is not the only autoimmune disease I have, I also have Raynaud's Syndrome. Whenever I'm cold (could be in the snow, or too cold of A/C) my toes turn white and go numb. It's nothing serious, and I don't take medication for it, but it's just something added onto the list of health issues I have at the ripe old age of 24. I am hoping that writing this will help me get over the fact that I will have this disease the rest of my life and help me to accept it, and for anyone else out there who feels alone. If anyone needs someone to vent to, or just some encouragement, please don't hesitate to email me! limitedspaceorganizing@gmail.com
Thanks Rebecca for letting me stop by today to share my story!! Don't forget to come visit my blog, Limited Space Organizing, I'd love to meet all of you!
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Thank you so much Sarah for your encouragement and strength in sharing your story with us! Your courage inspires all of us!
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Thank you so much Sarah for your encouragement and strength in sharing your story with us! Your courage inspires all of us!
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When I was thinking of the best way to begin my story, I figured I should introduce myself first. It always helps me to put a face to the words I’m reading.
My name is Leah and I’m 19 years old, soon to be 20 in June! Woot! I attend Georgia College in Milledgeville. The picture above was taken approximately in the middle of my health struggle. Ever since I was in middle school, I always remember being the slow, un-athletic kid. I could not comprehend how people could run the mile in less than 12 minutes. I would be a quarter of the way finished and feel like I was going to pass out. But despite my seemingly un-fit self, I tried out for soccer in 6th grade, prepared to conquer the world with my crazy soccer skills. To be honest, I really was not that bad in terms of ability. In fact, I loved playing soccer. But I just could not keep up with everybody. I just got winded so fast. Twenty girls tried out over the course of two days. I remember talking to my friend, who had spoken with the coach after the first day of try-outs. “Don’t worry,” she said, “Coach told me that they only have to cut one player. She said they have to cut the weakest link, which won’t be you or me.” To this day, I recall that conversation word for word, probably because I was the one player. 19 out of 20 girls made it, including one with a broken wrist that could not even play in the games. And I was the “weakest link” because I could not run as long or as hard as everyone else. It was that point in my life that I decided I was either overweight, out of shape, or both. In my mind, I would always be the weak one; the one at the back of the race.
In eighth grade, along with getting winded easily, I had my first heart palpitation. If you don’t know what a heart palpitation is, I will do my best to explain it. There can be many causes but the sensation itself feels like a suction, or a skipping feeling in your chest. In my case, it felt like my heart would miss a beat and then try to catch up. At first, it was very scary because I had no idea what was going on. But I talked to my doctor and she told me they “just happen” sometimes. (Thank you, medical professional, for that mind blowing explanation.) I didn’t care too much at the time because they happened very infrequently.
My sophomore year, which was an extremely pivotal point in my life brought with it my first heart break. Which, looking back, it seems so dumb to be hurt by such an obviously fruitless and detrimental relationship. But at the time, I was absolutely devastated. The guy said some not-very-nice-things to me that left me feeling like I would never be good enough for anybody. I had lost touch with many of my friends because of the relationship and I felt wholly alone and abandoned by those who I looked up to. I consequently got quite depressed and found myself wallowing in the state of it. After two months of ignoring me, the guy texted me to tell me that it was my fault he became suicidal. He told me I had a “terrible habit of making people feel like they needed to go jump of a cliff.” (Well, ouch, dude.) That comment made me start thinking. And thinking about certain things when you are depressed is never a good practice. Why am I even alive if I make people feel that way? Just for the record, I never actually considered suicide an option. What did cross my mind however, was that I would rather not be alive in general. I wasn’t going to actively stop myself from existing, but at the time, I wasn’t opposed to something happening to me. All during this period of time, my heart palpitation were increasing in frequency and intensity, as if to remind me that my heart was going to beat whether I wanted it to or not.
Let’s fast-forward some more, fantastic things happened between my sophomore and senior year. I surrendered my depression to God and recovered substantially from the emotional ditch I had dug myself into and was introuced to my life passion in the process: art. I don’t think that he knows it, but my art teacher (who I’ve known from kindergarten to the present) showed me the best form of therapy imaginable. I discovered that painting and creating works of art allowed me to heal and process the hurt I had kept crammed deep inside of me. It still does that for me, to this day. Also that year, I began dating my super-fantastic, amazing boyfriend (Who I just shared in a 2 year anniversary with this past February! Woohoo!) Things were getting better, but my health was plummeting downhill. My heart palpitations had increased to several a week, and I could no longer walk to my car after school without having my heart race.
My senior year, I became a slave to my poor health. I thought, I’m probably experiencing this because I’m out of shape and overweight. And I could fix that. I happen to have an iron will and if I set my mind to something, consider it done. I went from 145 to 125 pounds in two months by cutting my caloric intake to 1,000 calories per day. Sometimes I would cheat and reduce that to 800-900 per day. But even after I lost the weight, I was still experiencing intense heart palpitations at least once a day and had developed chronic pain in my chest and left arm. The pain was so intense some nights that it would bring me to the point of tears. My mom and I began seeking a cardiologist that school year and found one soon enough.
They ran every test under the sun on me and my dysfunctional little heart. I mean Echocardiograms, Stress tests, Holter Monitors, blood tests, etc. And to my surprise and discouragement, absolutely everything came back completely normal. I remember sitting in my cardiologists office when he told me that I would just have to get used to it. “It’s probably stress,” he said, “you’re heart just happens to beat a lot faster than everyone else’s.” And he was right. My average resting heart rate was 102 BPM. I was frustrated, but accepted that I was just less physically able than everyone else and I would remain, “the weakest link.” That is, until I walked up the stairs after school one day and felt my heart rate explode to 200-300 BPM. I remember standing in the hall, barely able to breath, thinking I was going to die. After a minute, it finally slowed back to normal and I sat on the ground, exhausted. I felt like I had just ran a 10 mile marathon. It was back to the Cardiologist for me.
My doctor prescribed me 25 mg of Toprol Xl, a beta-blocker, meant to keep my heart rate from accelerating uncontrollably. He guessed that I had some sort of Atrial Fibrillation, an irregular heart beat caused by faulty electrical impulses in the heart. I was just glad to have a name for it. The medicine helped with my heart rate, but I still had palpitations and excruciating chest and arm pain.
There is a picture of me in my beautiful hospital garb. I had an MRI and a CAT scan that night. In the morning, a cleaning woman came in and asked me something I didn’t expect. She said, “You are too young to be here. Did you pray to the Lord about your heart before you went to the doctor?” And I thought, well, no. Why didn’t I? Why did I feel that the doctors had a better answer?
Before I was released, two doctors came in to give me their medical opinions. One, a neurologist, told me I suffered a severe migraine, gave me some baby aspirin, and told me to go home. The other, a cardiologist, said he had to condemn me to a life of blood thinners because I was prone to clots. If I took the blood thinners, I would have to go to the emergency room if I ever fell and hit my head. I had a major decision to make: If I listened to the Neurologist and he was wrong, I could go home and have a clot go straight to my brain. But if I listened to the Cardiologist and he was wrong, I would be stuck on a controversial and dangerous blood thinner for the rest of my life. The painting I did below (called “That is the Question,”) depicts my struggle in that choice. And do you know which option I chose? Neither.
Instead, I took the advice of the most wise person in the hospital: the cleaning woman. I prayed and I trusted God. I was put in touch with a friend of mine who recommended the book, “Eat Right for Your Type,” after she had successfully overcome her heart issues by changing her eating habits. My iron will and I decided to give in a shot, considering I had little left to lose. I dropped my beta-blocker cold turkey (I do NOT recommend that) and I completely cut out wheat, corn and everything artificial completely from my diet the same day that I met with my friend. Over the next month, my chest and arm pain ceased altogether. My heart rate went from an average of 102 BPM to 70 BPM at rest. I nearly cried out of joy that day I was able to walk to my car without losing my breath. My heart palpitations have not stopped completely, but they are now infrequent and very mild, typically only recurring if I eat something that contains traces of wheat.
I look back today, on the past 8 years of my life, and cannot believe how far God has brought me. He was there when I didn’t make the soccer team and I felt worthless. He was there when I cried in the shower out of desperation during my sophomore year depression. He was there during every doctor’s appointment, every medical test, and every minute I was in the hospital, just waiting for me to finally look in his direction.
My life now is by no means perfect. I still struggle with depression on occasion. I still have days where my heart just won’t cooperate with me. But I don’t feel weak any more. I no longer feel like I am going to be the last one to finish the race. I don’t know where God is leading my path now, but what I do know is that I’m going to follow wherever He takes me. In the words of my current favorite author, J.R.R. Tolkien, “The Road goes ever on and on, down from the door where it began. Now far ahead the Road has gone, and I must follow, i f I can.”
Encouragement, Thoughts, Advice
1. Before making any dietary changes involving wheat, get tested for gluten intolerance or celiac disease while you still have wheat in your diet. You cannot get tested once it’s out of your system unless you go back to eating it, which, in my case, is now impossible. So test first, cut out later :)
2. Read up on “Eat Right for Your Type.” I am not claiming it as a Miracle-cure-all. But it has some logical solutions to common health problems.
3. I know doctors can be annoying. And I know you may be sick of hearing, “You’re probably just stressed.” If results keep coming back negative, check out the possibility of food allergies or intolerances. What we eat can significantly alter our health more than we realize.
4. Pray before your doctors appointments. Doctors are still human. They may know more than you do, but I recommend talking to God before you talk to them.
5. Be thankful for your health. It may not be perfect, but there is always someone who has it worse than you do. Always remember that.
Please email me if you want to ask me anything! If you want to see more of my artwork, I have a facebook page called “Collier Art
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