Mast Cell Activation: An Overview

Tightening in the throat that increases by the second. The grip, like no other. Strangling. Less air pushes through.  Constricting more. Will the airways close. Focus on breathing. On finding the —A wave of dizziness emerges as less air pretenses it’s self… Focus on finding the medication.

Near anaphylaxis. It has become a common occurrence although it has not yet become normal to work though. Mast Cell Activation Syndrome is one of a few new diagnosis I recently acquired.

I had hear of the disease in passing, but it was the furthest thing from my mind. When my POTS doctor asked if I had a lot of allergies I replied no thinking everyone has a list of allergies. My theory was everyone has allergies they are just unaware, which of course, is not true. Eventually, I made my way to an allergist and got conformation of my diagnosis. Mast Cell Activation Syndrome.

Defining Mast Cell Briefly

Mast cell are a vital part to our blood as they assist in the function of the immune system. They are found in many locations throughout the body. “Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. ”

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Triggers

For someone with mast cell there are various triggers. Basically, anything at a given moment can trigger us. Many times I have been okay with a food or cream for months or year than react to it. Some triggers include Heat, cold or sudden temperature changes, Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.), exercise, fatigue, food or beverages, including alcohol, medications,  natural odors, chemical odors, perfumes and scents venom infections (viral, bacterial or fungal), and Sun. Additionally someone with mast cell can have a reaction to themselves which is the strangest concept in my option or idiopathic reactions.

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Some Symptoms

Symptoms are unique for everyone. They can be altered depending on the day or the trigger. There are many symptoms with Mast Cell.

An overview of some of the many symptoms:

  • Gastrointestinal symptoms such as nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption
  • Low blood pressure
  • Fatigue
  • Itching, flushing, hives
  • Episodes of fainting or dizziness
  • Bone pain
  • Brain fog
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart
  • Anaphylaxis

Overlapping Illness

Most individuals have an overlapping illness or a few. It is common to have POTS (or Hyper POTS) and Ehlers–Danlos syndrome. Additionally, some of these individuals have an autoimmune disease.

Treatment

Treating mast cell of course comes with challenges. The biggest challenge is that many people have a lot of medication allergies. One of the goals is to calm down the mast cells. Additionally there needs to be a plan when one reacts. Some people have continuous symptoms such as pain. Than they also deal with a massive amount of sever symptoms when encountering a trigger. Due to this there are various elements of the treatment plan.  Almost all people start on two over the counter medications Zyrtec and Xanax. These medications should calm cells. Moreover, other over the counter and/ or prescriptions are used to treat it.

Getting Educated and Finding Support

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Photo by Sharon McCutcheon on Pexels.com

Like previously mentioned there are times we encounter a trigger which can result in some symptoms like itching or nausea to life threading symptoms such as Anaplhyaxis. Again treatments vary. Some use benadryl or an Epi Pen or both.

If you or a loved one have mast cell or suspected mast cell please educate yourself as much as possible because it can (and most likely will) save your life. Be sure to connect with others with this illness. Personally, I am a huge fan of Facebook support groups and there are some fabulous ones for Mast Cell. My favorite Mast Cell Facebook Support Group can be found here Mast Cell Activation Syndrome Support (MCAS only). This group has the best resources I have found to date. It also makes it easy to get educated and find support.

Need some extra information? Check out these wonderful resources: 

  • Mast Cell Research: http://mastcellresearch.com/
  • The Mastocytosis Society https://tmsforacure.org/
  • Mast Cell Activation Syndrome: The Immune System Gone Wrong https://www.drlam.com/blog/mast-cell-activation-syndrome-the-immune-system-gone-wrong/32795/
  • Mast Cell Activation Disorder | Diagnosis Discussionhttps://www.youtube.com/watch?v=iYje4mmh5mk

    Living with EDS: Mast Cell Activation Syndrome

    https://www.youtube.com/watch?v=qv40McIWocU

 

 

What are your tips for living with Mast Cell?

*Please note this is a very brief overview of this disease. Many medical professionals are not fully educated. Please subscribe to be notified when the next mast cell post comes out.

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Me And IBD

I am IBD Visible because I believe that awareness makes a difference. Education is key to living as healthy as possible. It is key to closing the gap between the healthy world and chronic illness world. Lastly, it is vital for those in the medical profession to gain a deeper understanding and compassion for us and strive for the best medical care. No matter how complex every person deserves the best medical care and to have manageable pain.

December 1st – 7th is Crohn’s & Colitis Awareness Week. The Chrons and Ulcerative Colitis Foundation says this overall about IBD: “Known collectively as inflammatory bowel diseases (IBD), Crohn’s disease and ulcerative colitis are painful, medically incurable diseases that attack the digestive system, causing abdominal pain, persistent diarrhea, rectal bleeding, fever, and weight loss. The effects of these diseases are largely invisible, which is why we need to make #IBDvisible!

Crohn’s disease may attack anywhere along the digestive tract, while ulcerative colitis inflames only the large intestine (colon). In addition to the impact on the GI tract, in some patients, IBD may also affect the joints, skin, bones, kidneys, liver, and eyes.”

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The pain began at age nine. Growing up, I frequently had stomach viruses. I had issues with being underweight, even though I was eating. I was told I was underweight because I was growing too quickly. The abdominal issues got worse about three years ago. I was unaware that I looked like a walking skeleton. In addition to the pain, I would have 15 -25 trips to the bathroom with diarrhea. I have encountered so many issues medically that it is a blur when some symptoms began. Eventually, I saw blood. It was a vicious cycle of medical testing and retesting. At one point in time, I swore I was done with the stomach stuff. Done seeing doctors. Done going through the tests.

Last April, I was in the I’m done state of mind when I encounter a huge flare. Of course, my mom brought me to the hospital. My liver enzymes were sky high. Despite the fact that I did not want to go through yet another colonoscopy one was ordered. I was positive for Ulcerative Colitis. The hospital doctors explained that they don’t see cases very often like mine. I have about five autoimmune diseases. I was in the hospital ten days. Despite their good efforts to avoid steroids, I ended up on a whopping 60 milligrams.

And so, the battle continued and continued to this day. I now have a gastro who I trust and like. One who listens, has compassion, trust me, and tells me everything I need to know. I struggle with eating daily. There is no set IBD diet. My current treatment plan consists of Prednisone, Balsalazide , and Remicade.

The journey with IBD is unique for everyone. If you are diagnosed with IBD I would like to encourage you to check out these links:Crohn’s and Colitis Foundation, Inflamed & Untamed, and Kelly Patricia.  CCFA has on its website: “We need to make IBD visible! Why be IBD visible? While IBD patients may look healthy internally they may be suffering. The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. YOU can change this by getting involved and sharing your stories, giving a face to these diseases.”

  • December 1: A focus on IBD advocacy.
  • December 2: The focus is how IBD is an invisible illness. The whole “but you don’t look sick,” thing.
  • December 3: The focus will be on pain.
  • December 4: The focus is on fatigue this day.
  • December 5: Mental health is the focus on this day.
  • December 6: Complications of IBD will be the focus of the day.
  • December 7: Community is the focus.

This week use the Twibbon to raise awareness. Share your story on social media. Use #IBDVisible. Share your story with the Crohn’s and Colitis Foundation linked above for a chance to be featured on the web page.

 

Fruit of Brokenness

Today, I have a special treat for you, Melinda from  Fruit of Brokenness.

I had to accept it. But I didn’t want to. I had to accept a term I didn’t like for myself. It’s a label used when someone does something horrific like shoot a bunch of innocent people or drown their children. We use it to describe people who are so out of touch with reality or so far outside societal norms that they make us uncomfortable…

MENTALLY ILL.

If you met me, your first thought wouldn’t be “mentally ill.” I mean, I look like a normal 43-year-old mom of three kids… which means I can look a little crazy-frazzled at times, but I’m not the stereotypical unkempt, wild-eyed, roaming the streets talking to imaginary friends and enemies.

I suffer from Major Depressive Disorder. Sometimes my brain goes sideways.

Major or severe, depression is difficult to explain to someone who has never experienced it.

It’s like walking death. Everything that makes you-you carved out, leaving a gaping emptiness that can’t believe you ever really were anything, especially not anything good. You no longer enjoy your favorite things, or anything else. It’s impossible to believe things will get better; it’s impossible to believe that better is your normal.

Some of you may think that faith in God should make feeling like this impossible, that people who claim to be Christians who suffer depression or anxiety must be doing something wrong.

Their faith must not be strong enough.

They don’t pray or read the Bible enough.

They must have hidden sin.

While all these things can contribute to depression, depression is not just a spiritual issue. When churches approach people struggling with mental health issues as if is all only their fault, it is unhelpful at best, and can be dangerous.

Faith hasn’t cured me.

While a correct understanding of God and ourselves is vital for mental health, it doesn’t guarantee we won’t suffer from depression or anxiety.

Faith isn’t a magic cure-all. As with physical illness, mental illness can strike down believers and dog their steps.

As Paul related in 2 Corinthians 12, I haven’t been able to pray away my thorn. I have medication that is keeping the suicidal depression in check, but I still struggle with depression and anxiety and know it would be dangerous to quit taking my medication.

I have a chronic illness that requires physical, mental, emotional, and spiritual treatment. To attribute one too much importance than the others is unhelpful. There’s a glitch in my brain that affects my emotions, my perception of reality, and my ability to think clearly.

At its worst, I believe that I am beyond grace.

But there’s something awesome about God’s refusal to remove our thorns. Our weaknesses are an opportunity for His strength, and also His grace, to shine.

Paul knew this.

God can heal. God does heal. But God doesn’t always heal.

It’s not wrong to ask for healing, but we must choose to trust Him whether or not He sends it.

Whatever God allows or chooses in my life, I need to let Him be God. In and through my circumstances.

A huge thank you to Melinda for sharing her story and offering hope to others. Please check out Melinda’s blog and social media:

Fruit of Brokenness

Fruit of Brokenness on Facebook

Melinda VanRy on Twitter

Melinda VanRy on Pinterest

 

General Medication Guide

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I can recall a time when swallowing pills were my worst nightmare. I was never able to remember to take my multi-vitamin. And I would avoid medication like the plague. Those days seem a lifetime away in my past along with carefree sunny afternoons of childhood. If you are newly diagnosed, there is a lot to learn, it can be intimidating.

If you are newly diagnosed, there is a lot to learn and a lot that sounds scary. The majority of people with a chronic illness will encounter a medication at some point in time, for many of us, it becomes a daily part of life. It becomes as natural as brushing your teeth.

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Constructing a treatment plan and sticking with it is essential making a big difference. The positives and side effects need to be considered before agreeing to any medication. Listening to the doctors expert advice is vital. In addition, I recommend doing your own homework and speaking with others who have taken the medication if possible. Keep in mind that everyone’s body reacts differently. Your body will not react the same way someone else’s has. If you have a caretaker or support system it is also wise to get their option. Personally, I always talk to my mom letting her know what I have learned about a medication, side effects, how long it will take to work, and my thoughts. It is okay to say no if you are not comfortable with taking a particular medication.

Vitamins and Supplements

Vitamins and supplements need to be discussed with your doctor and carefully thought out. I have multiple autoimmune disorders, therefore, my immune system is overactive. Vitamins and supplements boost your immune system, so I need to be cautious as I select only what my body truly needs. Which vitamins I take does vary on what my body needs and what other medication I am on. For example, with Prednisone potassium is one thing I know I need to have. With Depo, I need calcium and vitamin D. If I feel like I am not absorbing things properly I increase my vitamin C. Balance is key. The only other supplement I typically take is fish oil which can assist in brain fog and inflammation.

Over the Counter

Interactions need to be checked, whether it is with vitamins, prescription, or over the counter medications. Again over the counter medications must be discussed with your doctor to ensure it is the best thing for you. By simply talking to your doctor you can avoid terrible interactions and side effects.

Organization:

Organization is essential in many aspects with a chronic illness. If I didn’t have a system, I would not take my medication or vitamins ever. Especially considering most of us have brain fog. I keep all my medical supplies in a crate. This not only includes my medication but also tiger balm, braces, and chemo supply. I also have a daily pill organizer.

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Knowing when to take medication is important. Personally, I take the majority of mine after meals. Setting an alarm on your phone can be helpful. There are also free apps to help remind you to take medication on time. Having someone you are frequently with check in with you can also be useful.

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Whenever I go out I use old pill bottles to store the medication I will need or might need. I have a makeup bag that I put everything such as my inhaler, that I might need while I am out.

How do you stay organized with medication?

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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Endometriosis

March is Endometriosis awareness month.

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“Endo what?” might be your first question. Endometriosis is not talked about much and like most chronic illnesses out there is commonly misunderstood. It is a discriminating illness that only effects woman of child baring age. Mayo Clinic describes Endo, “Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region. (However it can invade anywhere potentially occur anywhere.)

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesion — abnormal tissue that binds organs together.” There are a total of five stages in Endo.

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It’s an autoimmune disorder, according to the autoimmune foundation of America. Girls whos mothers or other female family members who have endometriosis are seven times more likely to develop Endo. It is not the most comfortable topic to discuss, however these are the facts that dictate many women’s lives. It is a fairly common illness.The symptoms have a wide range and can have a devastating impact.

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Endometriosis is not just a painful period. It is difficult to diagnosis. Endo does not show up on CATSCANS, ultra sounds, or MRIs. The only way to know if one has endometriosis is surgery. There are limited treatment options available for women with endometriosis, the most popular one being birth control. On the other hand many girls have reactions to oral birth control this limits their treatment options even further. Some deal with the terrible symptoms, go into menopause, or try birth control injections.

Every female on my mothers side of my family has had endometriosis. I knew there was a chance I would have to deal with it, however it showed up years before expected. I had my fist ovarian cyst at nine years old, my period didn’t begin until four years later. Of course I encounter sever pain and other signs of Endo. About two years after my monthly began I discussed the option of doing exploratory surgery with an OBGY and my mom. I knew it was a long shot, I knew  could have symptoms and Endo not be present yet. But no one can be certain. Deciding to go through surgery is a gamble for any female who suspects having Endo.

I was anxious to say the least about my first surgery. They discovered a large cyst on my ovary which was leaking. All the scans had missed it (which is rare, but I’m different). If it had not been removed I could have lost a few organs including my bladder. They did not find endo but warned me I would need another laparoscopy down the road.

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I continued having  problems and other health issues. I tired oral birth control and had a reaction every time. I continued to have terrible periods and abdominal issues. I had a Gastro evaluation. Eventually I ended up back at an OVGYN. I distinctly recall the phone call that pushed me back into the OR. I was trying to explain to my doctor that I could not take the birth control she had prescribed. She told me point blank that I had two options: go into menopause or have another laproscopy done. I felt trapped. Facing a decision no nineteen year old girl should have to. I agreed to the surgery.

I did not love my surgeon … okay I disliked her. On the way to the OR I had an anxiety attack. In the OR I saw the instruments they were going to use. So yeah, I freaked out… who wouldn’t. She told one of the nurses to get me to shut up, so compassionate….not.

They discovered I have stage one Endo. Due to my past relationships with birth control and my complex medical history they put me on an injection, depo provera. Depo Provera is a steroid which pauses the cycle.  I hate Depo, but it’s something I know I have to do. The injection is extremely painful because it is a thick medication. I have a lot of GI symptoms with it, including loss of appetite. Right now this is the best option for me. I hold on to hope. Hope for better treatment.

Please help us to raise awareness!!  Have you or someone you know encounter Endo? How have you coped?

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The Past 48 Hours

The past 48 hours have been drenched with blessings as well as apprehension. Yesterday my friend came over, which is a treat. I have been so ill that I hardly see any of my friends or go out with them. Being able to have tea and talk was marvelous. Those couple of hours are something I am immensely grateful for. I cherish the moments I spend with my family and friends.

I received a phone call, moments before my friend left, from the infusion center. The nurse informed me that my infusion was being cancelled because someone neglected to complete paperwork for the insurance company. In addition the nurse told me they had no idea when I could receive my infusion. My insurance company only approves me for my infusion for six months at a time, then it needs to be re-approved. I questioned the doctor as well as two nurses in the infusion room regarding the paper work and was assured that everything was in order, there was nothing I needed to do. It is vital for me to get my infusion on time. The day before and day of my infusion are extremely difficult. I know getting my infusion late- even by a day would throw off my body.

I called my insurance company, even though I was certain there was nothing they could do. Thankfully I was wrong. The person I spoke to was compassionate and was able to speed things up. Even though we did not know this morning if I would be able to receive my infusion, we headed down to the doctors. I made several phone calls on the way down. As I was speaking to the third person at my insurance, the approval went through.

They began my infusion an hour late. Time during the infusion crawled by as my pain intensified. In addition to my Lupus pain I was having terrible abdominal pain from kidney stones.

My doctor moved. Therefore I am now a patient of one of her former co-workers. I dreaded seeing a new doctor. I have encountered many  quacks, uneducated, and disrespectful doctors. My health is very complex it is annoying and sometimes difficult to get a new doctor up to date with everything happening.

To my delight this new doctor had reviewed my records and spoke to my previous doctor. She was also educated about my main illness, eager to assist me, and kind. After much discussion she prescribed Methotrexate.

I feel extremely blessed how the past few hours have unfolded. I never imagined this would happen. I am over joyed and very thankful to begin a new chapter in my treatment plan.

Sending you lots of prayers, spoons, and hugs ❤

*Methotrexate blog post coming soon! Be sure to subscribe this way you don’t miss it.