Hospital Vacation

I have decided to share some aspects of my hospital visit. I am going to split this into a few different posts. Excuse my scattered brain if I seem to jump around.

Although winter break is finally in our mists as college students, chronic illness does not surrender momentary in search of a time of rejuvenation. My chronic illnesses thought it needed to make this point clear.

I am in a constant battle with the Prednisone taper. Finally down to five mg; it’s a love-hate tug a war. I have been steadily getting worse for about two weeks as of last Saturday. Attempting each day to tough it out and make it through the day as I counted the days until my doctor’s appointment.

Not much was different about last Saturday. I was able to eat a tiny bit of this and that which was a victory for me. Even so, my appetite decreased going into the early afternoon. I didn’t want to drink not to mention the thick fatigue fog consuming me along with the pain.

Spoonies know you avoid the ER after any holiday if possible. My mom and I thought it was best to go to make sure my liver enzymes didn’t spike. After two hours of uncomfortably waiting, I got a hallway ER bed, talk about the lack of privacy.

Living with a chronic illness, you learn to tune out some of the pain in order to function. I was in a lot of pain. I didn’t register the intensity of the pain until everyone began pressing on my stomach. (Tummy ache? Let’s press on it… Yea doc that makes it worse). Things ran slow. They ordered typical blood work along with a CT and X-Ray.

As someone rushed passed my bed I was handed labs and reports. I scanned them, nothing alarming…yet. The doctor passed me shortly mumbling something about going upstarts, which made no sense to me. The doctor wanted me to see a surgeon to be on the safe side. They admitted me for pain management and observation.

Of course, over the course of my stay, a sea of doctors flooded my room. Some helpful others just frustrating. Even with a diagnosis, I am still considered a complex case, a medical mystery.

The nurses at the hospital I go to are excellent. The nurses are one of the reason, I love this hospital. They offer encouragement, assistance, and support. I think Spoonies make friends with nurses fairly easily. While I was waiting to be discharged I was hanging out with my nurse.

In addition, I had a patient liaison. Having him on my case, in addition, proved a lot of comfort. I had never heard of a patient liaison. This is an advocate, they can provide information,  conversation, and support.

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I slept a lot in the hospital. I  was extremely grateful to have a private room and bathroom.

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My Invisible Fight

If you know me, you know I am chronically ill. My illness does not define who I am but it is a part of me. I look at as a trait not necessarily positive or negative. Like having brow hair, an oval face, or having dimples. My invisible fight. Words that empower. Words that inspire. Words that sum up my life over the past few years.

Without a doubt I have become a fighter, in this invisible fight. Few people know the details of my fight. Chronic illness is much more than what is seen on the surface. The battle is within. Falling apart only behind closed doors.

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I had many encounters with terrible doctors. No one took me seriously (I still struggle with this today). Doctors downplayed any concerns. My mom was my advocate, my voice. Growing up I was dangerously shy. If someone were to look at me crossed I would shrink back into my shell. Hearing my middle name released a waterfall of tears. Speaking up, was terrifying for me. Gradually I began to find my voice and become my own advocate. I have educated myself on treatment options, my illnesses, and everything medical that is relevant. I have learned that I know my body and my illnesses better than any doctor. After all I am the one who lives with it every moment of every day.  I fought to find my voice. My mom and I fought to find good doctors.

My health began to spin out of control in high school. It became evident that something was really wrong. Little by little new symptoms would develop. A new rash, unbearable pain, sun sensitivity, collapsing, weight loss, hair loss, and that was only the beginning. Medical testing became the norm of my life. Blood work that included more than thirty tubes of blood, MRIs, x-rays, GI studies, CATSCANS, scopes, EKGs, EEGS, and other medical tests that I cannot recall the names to. In addition, I had five operations in high school. The operations ranged from removing my tonsils to removing cysts to explority surgery.I thought I had hit rock bottom my junior year of high school, after an encounter with a medication that caused seizures. Little did I know rock bottom was much further down. Little did I know that I would long to go back to those high school years and deal with that pain and those symptoms.

I felt like the pause button has been hit one too many times. I have been home bound many times over the past six or so years. Every time play was hit and I began to recover, get stronger, and move forward pause would be hit yet again. It seems like each time my life is put on pause gets longer and finding the play button becomes more difficult. 

My invisible fight was taken to a new level in college first due to pluricy. Then to finding bloody urine that indicated a sever double kidney infection lasting four months. I was taken off my Lupus medication which gave Lupus permission to recklessly attack. I began seeing doctors every few days, had medical testing weekly, and became a regular at urgent care. I landed myself in the cardic unit last September. I continued to get worse. More testing. More doctors. More pain. Hopeless.

My symptoms shifted. My abdomen began to give me issues again. This time it was worse. Abdominal swelling to the point of looking at least six months pregnant was my newest symptom.  I began to question how much more my body could take. How many more days of intense pain that sent me to bed screaming and doubling over. I was taped. Giving in to the fight was tempting. No one had answers. No one knew what to do.

Things were terrible. Eating was difficult and staying hydrated was nearly impossible. The fatigue was thick yet my body wouldn’t surrender to sleep. I had to rest going up or down the stairs. Breathing was a chore. Shower a hazard. Daily tasks seemed like huge projects. Some days I couldn’t bend down to put on my own socks.

Finally it happened. This past April, I hit rock bottom. I could barely move. The pain and fatigue were more intense than I can describe. I was admitted to the hospital for ten days. https://chronicallyhopeful2014.wordpress.com/2015/05/02/hospitalization/

Looking back I believe that being admitted was the best thing for my health overall. I was at rock bottom. It was more difficult to keep moving forward than I can describe.

When I received the message on Chronically Hopeful inviting me to help and participate in Invisible Illness Awareness week I was shocked and over joyed. I firmly believe that sharing our invisible fight stories is vital. Someone had shared the fight song. I immediately connected with it and shortly after fell in love with the lyrics. I feel like that is where I am in my invisible fight, taking back my life. Taking back life after dramatic pauses is difficult. At times it is painfully slow. Progress seems invisible.  Taking back my life and continuing to fight is a daily decision and struggle. I am mastering a new balance act with my invisible fight and the rest of my life.

My invisible fight has probably been the most difficult fight of my life. I know it will continue to be a tough fight. It has caused me physical pain, heartbreak, taken me on an emotional roller coaster, played tug a war with my faith, caused me to lose friends, and lose much more. Yes, there are countless negative attributions of my invisible fight, but I am sincerely and deeply grateful to be in this fight. First of all I am grateful because I believe that God will use my invisible fight for his glory. Through my invisible fight I have matured as a person and as a Christian. I have learned so much. I have meet some of the most inspiring people. I have had the honor of running Chronically Hopeful and helping with the Invisible Illness Awareness Campaign. My prayer is that my invisible fight will be a testomy, inspiration, and blessing to others.

Disability Center

I am preparing to live on campus in a few short months. Recently I did all the paper work for the disability center.
It is best to register with the disability center at the beginning of the semester, even if you are in remission. You never know how the semester will unfold; being sick is unpredictable. It is best if everyone is aware that you are chronically ill. If you had a 504 plan it will follow you to college. If you don’t that’s okay, most colleges will still work with you. 
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Personally I meet with disability before any of my classes begin. We discus my health and what accommodations would be helpful for me. I sign some papers giving the disability center permission to speak to my professors on my behalf. In addition I e-mail all my professors. I know a lot of people hesitate telling administration about their illness. Personally I believe it is important to try to be open about being ill. I think being open allows others to be open and find encouragement as well. I share a lot of information with my college which you will see in the e-mail I sent to my professors this semester. I am open with my health for several reasons. When I do classes on campus I feel sharing everything about my health is for the best of my well-being. This way everyone knows what to do in the event of an emergency. I do have a history of passing out. If for some reason I could not speak or could not remember basic information my professor and disability would know and be able to share it with paramedics or emergency room staff. Whenever I am not home I wear a medical ID bracelet with basic information on it. In an emergency it is important for those around you to know what illnesses you have, what medication you are on, what medication you are allergic to, and who to contact. The paramedics will  not look in your wallet for a list of medication without your consent. On my ID bracelet I put, “On meds, check wallet.”
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Sorry about that tangent, let’s get back on topic. I also share this information so my professors know that I will miss class sometimes due to flares, doctors, or treatments. I feel it is best to be up front about my health so that they can assistant me through out the semester as needed. Here is a sample e-mail: Dear Professor Name, I hope you are having a wonderful summer. My name is Victoria Guyadeen I will be in your online, Fundamentals of Nutrition course, BIOS 107, this coming semester. I am e-mailing you to inform you that I am Chronically Ill. Mrs.Smith from the disability center at the college will also be in contact with you before this semester begins. My main illness is Systemic Lupus Erythematosus. Lupus is an autoimmune disorder, in which the immune system becomes over active and confused. A person immune system should fight off bacteria and infections but when someone has Lupus it attacks the body. It can attack major organs, the skin, joints, and many other things. The symptoms vary from person to person, from day to day. A flare refers to when the disease is active causing increased pain and other symptoms such as fever. Lupus can range from mild to life threatening. I have several over lapping illnesses along with Systemic Lupus Erythematosus. These illnesses are: Asthma, Raynaud’s phenomenon, Endometriosis, Arthritis, Fibromyalgia, Osteoporosis, Anemia, IBD, Supernumerary Kidney, Kidney Stones, and Migraines. I also have brain fog due to Lupus. Brain fog has to do with memory. It can range from mild to severe. Mine is moderate. I get lost frequently, forget words and basic information, and sometimes I forget who people are. I am still learning how to work with academically. Due to brain fog I might ask for clarification for certain assignments. Like anyone who is chronically ill I have good days and terrible days. However I never know when I will begin to flare or end up in the emergency room. I still see my doctors frequently and go through intense and time consuming medical testing. Currently I am under the care of four doctors. My doctors are about two hours from where I live. I have begun a new treatment for my Lupus, it is called Benlysta. Benlysta is an IV infusion; I receive it once a month on a Friday. Between the car ride and infusion it takes anywhere from six to eight hours. Of course I will do any assignments a head of time when my treatment is coming up. This is my third year of doing online learning. I enjoy online learning. The flexibility is priceless for me. I am able to work super hard on my good days which allow me to rest more on bad days. I normally work ahead to some degree in case I begin to flare or have doctor appointments. I also work ahead to keep my stress a level down which is vital. Despite my illnesses I set high academic goals for myself. One academic goal I have set for myself for this coming semester is to achieve at least a 3.8 GPA. I am extremely excited to be taking this class and I look forward to working with you. I will attach the letter my primary care doctor wrote for disability. Over the next few weeks disability will e-mail you a full list of my accommodations. Please give me 48 hours’ notice if you decided to change the instructions on an assignment. If you are willing to give me a copy of the syllabus for the fall that would be greatly appreciated, this way I can coordinate with my doctor’s appointments. Thank you so much for taking the time to read this. I apologize for it being such a long e-mail. If you have any other questions or need more information about anything please do not hesitate to e-mail me. I try to be extremely open about my health. I feel the honesty will help me succeed in college. Thank you once again. I hope you enjoy the rest of your summer.
Sincerely, Victoria Guyadeen
(*Note this is an old letter from a few semesters ago).
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How much you share about your health is completely up to you. Learning how much to share and how to balance college life and an illness takes time. Be patient with yourself. Enjoy your time in college.
Please: Let me know what else would be helpful for you. I could show samples of doctor notes to the professors and accommodation list. Or what other tools would be useful for your college journey.

Upper Gastrointestinal Endoscopy

Medical testing is a normal part of a spoonie life. Depending on the illness, the progression of the illness, and several other factors determine how often we go for medical testing. On average, I am sure most Spoonies would agree with me that it is too often. I go for blood work a minum of monthly. The majority of the time there is at least one other test my body must endure at some point in time during the month. I feel like there is never enough time to recover between medical tests. Though most tests seem simple, each test is draining on the body.

Tomorrow, I will be going for a Upper Gastrointestinal Endoscopy. Which means, yet another trip to the OR. Over the past five or six years I have had many visits to the OR. A grand total of five surgeries in four years and including tomorrow, eight scopes. The scopes I have had include  Upper Gastrointestinal Endoscopy, Colonoscopy, and Cystoscopy  No one expects to go to the OR. It is always dreaded. But you do what you’ve gotta do, in order to get better, to move forward, and to get answers.

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Going for my follow up Gastro appointment, I never would have thought the doctor would even think of rather along mention another scope. I recently had a colonoscopy while on vacation in the hospital. I am less then thrilled about another scope, but I do understand the doctors reasoning. My stomach is still swelling, nausea, not much apatite, and I am still having intense pain, too often. The doctor wants to make sure that there are no ulcers in my stomach, no blockage, and no gall stones. Despite the fact that I lost my gall bladder nearly two years ago, there is a chance that in the liver or one of the ducks a stone left behind causing trouble.

For those of you who do not know what an Upper gastrointestinal endoscopy is, I will give you a quick over view. WebMD defines an Upper gastrointestinal endoscopy: ” is a procedure that allows your doctor to look at the interior lining of your esophagus , your stomach, and the first part of your small intestine through a thin, flexible viewing instrument called an endoscope. The tip of the endoscope is inserted through your mouth and then gently moved down your throat into the esophagus, stomach, and duodenum (upper gastrointestinal tract).”

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My procedure will be done in a hospital as an out patient. It will take a least an hour. They will be performing an internal ultra sound during the procedure as well. I will be asleep the entire time, praise God.

I have gone through a lot of medical testing and medical stuff. For me knowing step by step what will occur eases my anxiety. Even so the day of most of my procedures I get pre-opt jitters. Going under anesthesia is nerve racking for most people. I have been known to freak out a bit on the way to the OR. Once on the way to the OR for surgery I asked the same question so many times the doctor told the nurse to make me shut up. Hey, no one likes seeing the OR.

Overall, I am not anxious about the procedure. This will be my third Upper gastrointestinal endoscopy, therefore I know what to expect. At least I’ll get a nice nap. Due to the fact that I am on steroids, I am not expecting them to find much.

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Prednisone Part One

I have shared on here off and on about my treatment plan. My treatment plan has drastically changed after leaving the hospital. This is partly due to my liver and partly my doctors just being a bit annoying. I have been pulled off of Methotrexate and Benlysta.  Right now my main medication is Prednisone. I have decided to do a small series of Prednisone blog posts, hopefully someone will find it helpful. Prednisone, it is almost always a love- hate relationship. It is unclear which is better being on it or not. There are an abundance of harsh side effects, yet it is a life savior. 46bde1cc6919eb9cff7a962b8c6f5026

Most Spoonies know of  Prednisone, for those who don’t, I will give you a brief overview. By definition Prednisone is, “an analogue of cortisone,used as an anti-inflammatory,immunosuppressive, and antineoplastic in the treatment of various diseases.” Put simply, Prednisone is a steroid. The body naturally makes low amounts of steroids it is also classified as hormones. This steroid is not the same type that well known people such as sports players or movie stars take. Prednisone should be a fast acting medication. It is used for countless illnesses arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, immune system disorders and additional illnesses.   download

There is a side effect overload when looking at Prednisone. The side effects range from irritating to utterly devastating. Some ‘mild’ side effects include: Abnormal Fat Distribution, Absence of Menstrual Periods, Acne, Disorder involving Personality Changes, Excessive Hairiness, Excessive Sweating, Feel Like Throwing Up, Moon Face, Visible Water Retention, and Weight Gain. More serious side effects include: Seizures, Infection, Low Amount of Calcium in the Blood, Thin Fragile Skin, and Anemia. Most people experience at least one side effect while on Prednisone. Every encounter with Prednisone is different. It is a difficult medication to be on. Many times it alters someone’s personality and how they look. Coping with side effects is a challenge. It is meant to be used short term, but that is not always the case. prednisone2

Check back this month for more Prednisone posts. I will be sharing my personal experience and talking about how to cope with Prednisone.

A Caregivers Perspective. Part One.

Being a Mom of a Chronically Ill Child

Written By: Eileen Guyadeen

Being a caregiver of one who is chronically ill comes with countless challenges. Caring for an ill child is one of the most difficult things to do. Those who are ill rely completely on their caregivers. Being a caregiver can be a lonely, overwhelming, and blessed road. This post is to honor all caregivers, especially my own, my mother Eileen Guyadeen. Without her I would not be where I am today or who I am today. I could never express enough gratitude for all she has done for me.

-Victoria

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My daughter Victoria who writes this blog for chronic ill people, ask me if I would write something for it. I will start at the beginning, Victoria was born on my birthday which is January 28, 1994. She was a healthy baby at 6 lbs 8 oz. A blessing in every way possible, especially when my own doctor told me it will be nearly impossible for me because of myself having endometriosis, and like I told the doctor he is not God, and I truly believe with God all things are possible. My pregnancy went pretty well, listening to my doctor and doing whatever I needed to do to have a healthy child.

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Victoria was an active child by the time she was two and a half I had enrolled her in ballet classes, and she simply loved it too. She was small for her age and I kept her first ballet and taps shoes for my keepsake, because the dance teacher had a hard time finding things to fit her. She always loved playing outdoors all the time, during the summer she played in her pool, with her toys, and even loved reading outside all thru the beginning of her teenage years. In every way possible Victoria was always an active child. However over the years since she was a baby Victoria always seem to get a lot of viruses, doctor couldn’t always explain it to me why she did, always missing a lot of school. I remember by the time her ninth birthday rolled around she had a lot of stomach problems, she was out of school for three months, I finally started to record everything she ate and it was the diary that was making her so sick, so I cut it out from her diet. I spent plenty of times in the emergency room with her stomach problems never to know what was going on, and more important never an answer for what was going on.

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By the time she was in middle school when I took her to the doctor for the problem, her doctor thought she was trying to get out of going to school. I brought in her report card showing this child was an honor and high honor roll student, and loved being in school. Thru out high school my daughter’s health got worst, going thru five operations in four years. Her health got worst by the time she was a junior in high school that she was on homebound for school. By the time her senior year was about to start the principal of her high school share with us if Victoria miss more than ten days of school she would not be able to walk at her graduation. So with that statement Victoria ask me if she could Cyber School her senior year, and I agree that she could. She finished her senior year with 3.7 GPA, the night of her graduation it was very painful for her to walk at the ceremony, and I cried with her and said I know however you did it with honors in spite of your pain.

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Since Victoria graduated from high school things for her with her health has gotten worst. Doctors never can make up their minds for a treatment plan for her, it makes a person’s head spin. I have been ask so many times, how I do this with my daughter’s health. My answer to the question is my faith in the Lord Jesus Christ. With everyone appointment rather a doctor appointment, a trip to urgent care, test, or even the emergency room, and hospital stay, I carry along with me my Bible, why because I begin to search the scriptures for God’s promises. In the book of Jeremiah 29:11 it says For I know the plans I have for you declares the Lord, plans to prosper you, not to harm you, plans to give you hope and a future.  Victoria is a gift from God and I do believe that he loves her even more than her dad and I could ever love her.  Every time my daughter cries in pain, I say to her that God didn’t give us a spirit of fear, and I can do all things thru Christ who gives me strength (Philippians 4:13) we have cried together, as well as something more important which is to pray together. For God to give her the strength going thru this, as well as wisdom for her doctors, to see what He sees inside of her, because Jesus is the great physician. It is never easy, right before my daughter went off to college I had a meltdown. Yelling at God what did my daughter ever do to deserve this horrible disease, and then finally after I stop being angry at God, I heard a voice in my heart then why my son (Jesus Christ) in your place on the cross, I never ask that question again. I am always asking God for the strength thru all of this, we travel two hours each way to her doctors, and yes there has been many times I am total drain with running back and forth. I also have two other children to care for, which at times I feel as thro I have short change them thru this. I try to remember different things to get me thru, Stop, Drop, Kneel, and Pray, I have relied on God to get us thru this with my daughter. Jesus never promises anyone that once we accepted him as our own personnel savior, that our lives would be easy, he promises , surely I am with you always to the end of time (Matthew 28:20) I have seen my own personnel walk with Christ change for the better. I wanted to show Victoria, as well as my other two children, that life can become very hard for us at times, and thru those difficult time we need to run to the Lord, not away from him. Lean on Jesus and give him our burdens. In the gospel of Matthew 11:28 Jesus says these words Come to me, all you who are heavy burdened, and I will give your rest, Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden light. If anyone ever read the poems Footprints in the Sand, as you read these words it says, Lord you say that once I started to follow you, you would never leave me, so I don’t understand why was it at the difficult times I saw once one set of footprints, and the other times there were two. He replied my precious child during those hard times, it was then that I carried you. So I can picture during these hard times Jesus is carrying my daughter. Victoria is in the process of finishing her second year of college, in which she has been doing on line for a while. In thru all of her pain, doctors, test etc. Victoria has manage to be on the Dean’s list at Sussex County Community College, with a 4.0 GPA, as well as being inducted into the international honor society this past March. In the fall she will finish her BA degree at Centenary College which is not far from us, and then hopefully on to Drew University for her Master degree. Thru all of the medical problems that my daughter has gone thru so far, I have totally relied on my church family for prayer, as well as other family or friends, because pray to me is an essential tool we need to have with our daily walk with Christ. For me thru all of this I continue to walk with my Lord, with prayer, studying the scriptures and being involved in my church and just serving him. I continue to thank God for choosing me to be Victoria’s mom, I have been the one who has been bless. Yes it has been difficult with her disease, you see she has lupus which is an autoimmune disease, however it doesn’t define who she is and that is she is the daughter of the most high king Jesus Christ.

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Challenger

I have overcome so many challenges in the past few years. I encounter new challenges daily. I battled depression a bit in high school, low self esteem issues, 5 surgery’s, almost falling into a coma, a concussion, and numerous additional health issues. The health issues have been the most steady issue in my life for at least five years now. I have grown as a person through it all developing more patiences.

I honestly thought my Jr year of high school that I had hit rock bottom with my health. I did not yet have a diagnosis. Yet I was encountering what seemed like every symptom under the sun, from pain to seizures, to rashes. I had seen a few doctors who were absolute quacks. I seriously question their degree. One never ran any tests diagnosing me with Fibromyalgia. Then putting me on Cymbalta and he kept upping the dose. I eventually just stopped taking it because I had become so ill from the medication. Though Jr year was difficult, it was not rock bottom with my health.

I love college but my college years have been laced with many challenges. I had pleurisy, a kidney infection, and began passing stones. I got undiagnosed with Lupus and taken off my medication then rediagnosed. Many of you know I was in the hospital last fall due to an allergic reaction to Reclast. Now I am working through a concussion, kidney stones, flare ups, and tapering off steroids. There is never a dull moment.

I have had my share of challenges but I try to be content wit whatever season of life I am in. Of course that is another challenge. I know the Lord has a beautiful purpose for my life and will use my pain to bring him glory. Right now I am working on strengthening my relationship with him. Making that my number one priority as I face new challenges.I know the Lord will provide all I need to get through each day and I am grateful for that.

If you are facing challenges today, I want you to know that you are not alone. Don’t be afraid to reach out and to tell people that you are struggling. You probably don’t want to make a billboard announcing this but telling trust worthy people such as a family member or a friend. Talking to someone makes a huge difference. I also encourage you to bring your burdened heart to the Lord. Open up and let it all out.

It is okay to grieve what you have lost but don’t forget to also be grateful for all that you have. I want you to understand that just because you cannot do something that does not make you less of a person or a failure. You are beautiful, valuable, and precious. You have an amazing purpose in this world. You will make a difference.

Whatever challenges you are facing remember this is only a season in life and it will pass. Sending spoons, hugs, and prayers ❤