2016 Major Moments

Another Christmas races through our lives. The season always slips by in a blink of an eye. Shortly after another year kisses us goodbye. This year is elegantly coming to a close and we are able to once more reflect on the moments which have shaped the year. Each year shapes our lives and our character. Each year we learn, grow, are filled with love and joy, and shed many tears.

This year began with a shaky start for me. A few short days after the new year, I was admitted to the hospital due to extreme pain levels. They admitted me to the surgery floor fearing my intestines collapsed or did something funky. I had two Gastros on my case who bickered back and forth accomplishing nothing. I meet another Gastro while admitted who became a permanent asset to my medical team. We tweaked my treatment plan.

My Ulcerative Colitis continued to flare. Sending me to the ER after over eight hours of vomiting. Steroid doses were up and down. At the same time, I began my first online Bible study. Featuring the book I Know His Name by Wendy Blight. I honestly, I little hope for learning anything from the study and went into it with some doubt due to bad experiences in the past. However, God deeply blessed me beyond my dreams. He used that study to change my life forever. Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain.

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Shortly after, I joined God-Living Girls a support group for women with chronic illness and chronic pain. I adore this support group. There are many thriving ministries online. I encourage women of all ages to check it out here God Living Girls.

 

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Sadie watching a sermon from our Online Chruch 

 

 

In April I was nominated for the Psychology honor society, better known as Psi Chi. Then in May I graduated with my Associate degree. Shortly after, I began leading Online Bible Study. In addition, assisting in online ministry.  I mainly assist in running two Bible Studies and do a Bible Study Live event about once a week.

I began pursuing my bachelor’s degree at Liberty University Online in August. I adore the online program here. To my surprise, I have thrived in the program beyond my dreams. I have access to tutoring, an advisor, and the library. Additionally, I began assisting with Sunday school at church. I teach the teens, however, if I don’t have kids, I assist with the little ones. They always have me laughing.

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My Gastro retired. So I began seeing another new Gastro. I am grateful this one is compassionate and well educated. We began paperwork for Remicade over the fall.

Then in October, I had another kidney infection along with stones. I also got to have a lovely weekend with my friend and visit Liberty. The trip to Liberty was one of the highlights of my year.

In November, I stopped 6 MP and began Remicade. A difficult transition. I have done two doses. It is an adjustment period.

December my friend and her family visited.(Another highlight!) While I was away with my friend I began thinking more about becoming more independent. I decided it was time to apply for a service dog.  I also got approval to move forward in the service dog process. I just began the process so I have a long way to go but it is progress and I am excited!

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Med Changes

Chemotherapy. One of those words with plenty of weight. Plenty of assumptions attached to it. For example, only Cancer patients receive it, this is a  myth. It is only a word. Only a medication designed to assist an individual in some way. Autoimmune diseases are treated with low dose chemotherapy. Chemo suppresses the immune system and helps inflammation.

Personally, I have encountered three chemos to date to attempt to control my illnesses. First I did methotrexate self-injection. Than Mercaptopurine was added. (This combination is not advised.) I couldn’t handle that for long so we made the switch to  just Mercaptopurine.

I stopped Mercaptopurine the end of last month. Medication changes are challenging. Needless to say, it can increase pain and symptoms. It is a difficult medication to start and to stop. Though I am not a fan it did suppress my immune system some, therefore, stopping it increased pain. However, it was worth it because I have begun my journey with Remicade.

Remicade is a biologic which is received through an infusion. It can be used to treat Chrons, Ulcerative Colitis, Rheumatoid Arthritis, Psoriatic Arthritis, Ankylosing Spondylitis, and Plaque Psoriasis. Remicade suppresses the immune system, similar to other medications used to treat autoimmune disorders. Most times, to qualify for a biologic an individual must fail other treatments or have difficulties getting off steroids. The Remicade web page provides additional helpful information.

The first three infusions are loading doses and are given every two weeks. I had my first Remicade infusion November 8th (but I have been on another biologic and received other medications via an infusion). Personally, I pre-medicate in the car on my way to the infusion center. An hour before I take Prednisone, Benadryl, and Tylenol. The infusion lasts a total of three hours. I had nurses and a PA adjusting the speed of the Remicade every few minutes. In addition, they monitored my vitals.I felt beyond wiped out afterward as if the life was sucked out of me.

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That evening I was extremely achy. In addition, I had high pain in the lower right side of my abdomen. I was in bed by nine pm. However, that is the extent of the side effects I experienced. The joint pain was slightly better for a few days. I get my second loading dose soon. Eight weeks is the time frame that an individual should start to encounter improvement.

My next infusion is in a few days. I am extremely tired. The pain levels have returned to preinfusion. The weather isn’t helping any. The pressure is dropping. Additionally, we are expecting a mix of rain and snow. All in all, I am ready for my second infusion. Things feel much more hopeful on Remicade.

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Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.

Ulcerative Colitis Update

This flare began about a week ago. My liver enzymes are high again, though not nearly as bad as in the past. The theory is that this is from my immune system attacking it. The major difference is that this time I am still on 15 mg of prednisone, which I also refer to as my safety net. The pain has been extremely intense this weekend. With these flares, it feels like being hit by a bus I know it sounds dramatic, but the intensity is hard to describe. The main issue is the abdominal area. Evey joint hurts, my ears ache,I have the chills and nausea. Of course, the fatigue is 50x’s worse than normal.

My Gastro retired last month and that was heartbreaking. She was the first gastro I had trusted and had compassion. I saw the new gastro on Friday and it was nerve-racking, to say the least. I am not a fan of seeing new doctors because my case is complex. I was relieved that this doctor had listened, was up to date on my medical mess, had some compassion, and was ready to start something new.

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Most of you know that in addition to Lupus and POTS I have Ulcerative Colitis. Eating has been a struggle when the Prednisone is lower than 15 mg. Currently, I am on a combination of two anti-inflammatories, Prednisone, and Mercaptopurine (a chemo also known as 6mp). The goal for any chronic illness patient is to come off Prednisone. In my case dropping to 5 mg or coming off means going into the hospital. This is a common issue for people with a chronic illness. I know I am not alone in this struggle. #It’s A Spoonie Life! Thankfully, I have been blessed and have not suffered major side effects from Prednisone. 6MP is my second chemo. I am not a fan. I have had no improvement on it.

With all that being said I got the extremely exciting news that I do qualify for a biologic (which I knew). And of course, my new gastro feels it is time to begin the testing and paperwork. Testing include normal labs CBC, Comprehensive Metabolic Panel, and Hep Panels. In addition, TB testing is required. At the same time, insurance paperwork is started. I will be on Remicade. I will be writing a Remicade blog post soon!

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A huge thank you to everyone who participated in invisible illness awareness week! I was honored to be involved, but I wish I could have done more.

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This Is Chronic Illness

How the melody began of the symphony “the Spoonie Life” is unique to each of us. However, like a ton of bricks, the news crushed us emotionally, which no preparation could brace us for the sudden shift in song. Lumped into a group of over 125 million American’s who are in daily combat with their bodies due to chronic illness. After all, these are Invisible Illnesses.

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Adjusting to the new role. A list of things we can no longer do. Harsh comments as well as the stairs, seem to greet us everywhere. Friendships fade away. Symptoms and pain consume each day. Functioning seems nearly impossible. Daily medications. Frequent breaks. This is chronic illness.

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Well-meaning doctors increase anxiety levels. Medical testing is never ending.  No one seems to know what to do. At times our health is out of control and all we can do is ride the roller coaster and pray. Help seems just out of reach. This is chronic illness.

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Yet we cling to hope because our lives depend on it. Dreaming. We find that reason to keep fighting. This is chronic illness.

This week is Invisible Illness Awareness Week. A week to honor you and to give you a voice. To equip you to fight your battle a little better. Making the invisible visible. Making those around us more aware. Hopefully, others will understand the reality of chronic illness.

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My friend with an invisible illness, you are brave, diligent, and compassionate. You overcome  negativity.  You have battled your invisible illness gracefully. You are an inspiration. Don’t give up! You are beautiful. You have an amazing purpose and you are making a difference.

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:

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Fruit of Brokenness on Facebook

Melinda VanRy on Twitter

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Pictures of The Past

A picture is worth a thousand words along with a few dozen memories and emotions. Capturing the past the heartache of what once was bubbles over.  Sometimes, I avoid looking at my photos, but other days the temptation of a walk down memory lane wins. The days when laughter was plentiful and sleep was not vital.  Staying up half the night with friends was normal. And of course, anything seemed possible. Not knowing that all too soon minor aches would explode into full blown take over your entire life chronic illness.

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I look at the girl in those pictures overflowing with laughter and pure joy. The insecurities going through my mind as a teen now seem silly. Things weren’t perfect, but they appear that way. The past usually seems easier as we look back.  There are still days I miss the people who left me. The friends who said they would be there, but left.

 

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It’s true, you adjust to the chronic illness life, but little things happen that make you grieve your past. I try to not get carried away in the what if I wasn’t sick game or the things I miss. Everyone asks what you miss most, in reality, I doubt any of us can narrow it down to one thing. I miss how active I once was the energy. Being out in the sun or at the ocean. I miss dancing, hiking, and doing mission work. I miss my hair. Not needing to worry about passing out or running to the bathroom. I miss my old bad days.

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All in all most days I do well with being chronically ill emotionally. I have adjusted and know in my heart that God will use all the pain, symptoms, and every other little chronic illness thing for His glory. He has allowed Lupus and these illnesses to be a part of my life, therefore, I am okay with where I am. Yet, I am still human. I become anxious, overwhelmed, grieve, and ride the roller coaster of emotions. After last April, my emotions went on vacation, but they are back and we are learning how to live together once again.

To be honest, most days are hard in some capacity. Currently, this includes minor meltdowns, severe chest pain, dizzy spells, joint pain, and bladder pain. I have another halter monitor (I will do a review- if I don’t throw it in a lake first). A bladder infection with a side of kidney stones. To top it all off my summer class final is coming up. My liver is holding up though I am cautious due to the fact I need to taper off steroids.

This post is a bit long, but I will be doing a Bible Study update post to let you know more about online Bible studies, which I am excited about!

Can you relate to anything in this post? If so, let me know in the comments! You are the reason I share about my life as a spoonie.

Everything But The Kitchen Sink

I am thrilled that finals week is finally behind me. Whoever invented finals is not my best friend. I love school, but finals week is too much stress. I will be graduating this week with my Associates, finally. Then a summer course, and I am completely done with community college. There are a few things in the air in reference to where I will be continuing my education at. Both my options are great. I am trusting in God to direct my steps and I am excited to see where He is leading me.

A few days before finals, I passed out for about ten minutes, while taking my cat to the Vet. (Poor Kitty was scared outta her mind). I didn’t have my typical warning signs. I am doubtful, it was just POTS, but then again who knows. Hours later I went to the Emergency Room.  My doctor isn’t clear about what an emergency is, therefore I have to be a pain and call to find out. The conclusion of the visit was I did not have a heart attack and no bleeding on the brain. I am going through a period of falling and dizzy spells once again, which is irritating. I have had intense muscle  pain in my legs which has made me wonder if it’s som how related. I have discovered a few things that help a tiny bit with the muscle pain: Village Natural Soap, Dr. Teals Pure Epsom Salt Body Oil, and tiger balm. The soap and oil are excellent for chemo skin. These are the first things that have helped my chemo skin.

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I am back on steroids for a short amount of time. The goal is to be off sometime in June. I switched from Methotrexate to 6 MP also known as Mercaptopurine. 6 MP is also a chemo and the dosage is higher. I noticted there isn’t as much paticent information as Methotrexate. I have been on it almost a month. I take it after dinner because in the beginning I was having migraines. The first two weeks was difficult. My assumption is because it’s a higher dose of Chemo. If this doesn’t give me the assistance I need we will be adding a biologic. Personally, I am comfortable with this option, more than ready to begin, and I think it is a good step. Many meds help both Lupus and IBD. Right now, it is another waiting period, which is always hard.

Currently, I am able to eat which is always exciting. I have a lot more options with food on steroids. In moderation, I can do fruit, juice, and small amounts of veggies. Being able to eat healthy is a treat.

We have had a lot of rain lately where I live. My hip and arthritis in general, have been less than happy about this. I am still not sure what is going to happen with my hip. Still having issues finding a doctor. Life is complicated with a chronic illness, as well all know.

Here are some pics of the Lupus hand sign from awareness day:

 

I will be posting more on the blog now that the semester is over. I have been working hard on a few posts and I am excited to share them with you! How have you been doing? Let me know in the comments.

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Oh! And by the way, I have made a new e-mail for the blog, being that I got locked out of my old e-mail after my concussion. hopefulspoonie@gmail.com

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?

Snow Day Update

We are getting all the snow we have missed earlier in the season where I live. My mom and I heard it could keep snowing until Monday. You never know with the weather. I am thrilled that my family is safely inside. I pray that you are safe and warm this snowy Saturday.

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The snow has never affected my pain levels- until this storm. Last February I had a POTS episode where I got hurt from passing out apparently aggravating and changing how my POTS reacts to things. This morning was a bit difficult including back pain and a migraine. Like many Lupies, my doctors question if Fibromyalgia is a part of my pain. Some doctors tend to blame everything on Fibro and downplay another illness causing chaos. Let’s be real it can only do so much and the medical field does not have enough education on it. I know many of you struggle with Fibro and my heart goes out to you. It is my prayer that doctors will take us more seriously and that more research will be conducted and better treatment will be put into place. Jumping back to POTS for a moment I did experience two simple falls recently irritating each hip. I am wondering if it could be weather related.

I wasn’t planning on the mini Fibro rant but it is relevant. Anyways. Update time. I have been out of the hospital for a while now. This second I am feeling great (Compliments of Tramadol).  I have seen a new Gastro. I am hopeful and a bit nervous about the switch but it absolutely needed to be done. The doctor was ready to put a new treatment plan into place and get things under control. I am back up on Prednisone, 25 mg. When I saw her about a week ago she also prescribed a Chemo. Two Chemos and Steriods seems like a lot to me. The option is excellent but not ideal. I have already had issues with my blood counts. Therefore, I have been researching other options. After hours of insurance calls, I have the name of a medication that does not interact with any of my other meds. It is a general anti-inflammatory. My hope is the doctor will agree to give it a shot. Either way, I am looking at about two months or more for the medication to begin working.

Either way, I am looking at about two months or more for the medication to begin working. The plan is to be off Steriods sometime in March. The combination of two Chemos and Steriods made me extremly emotional. Every little thing was giving me excessive anxiety. All I wanted to do was cry. And I did do that.

The increase has been a blessing. I am able to eat some and drink plenty. I can feel the difference now that my body is absorbing food and medication. I have less weakness.

Before the increase of steroids, my injection was making me feel sick. I am so grateful that it went much better last night. I look forward to the day that I am on a more stable treatment plan. It can also be nerve racking at the time thinking about life off of steroids. More than anything I want to be off. At the same time I know in my heart my body will be much different. It won’t be the same as before Prednisone. It will take time to adjust.

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Outside of the health roller coaster, I have been reading and focusing on Chronically Hopeful on Facebook. I got a 20 dollar gift certificate for Logos for my birthday. I think it is awesome. I got two books and a Bible Magazine.

Weather permitting, I will begin school Monday. I am taking History, Effective Speaking, Forensics, and Spanish.

Leave me a comment below, share how you are doing, what’s new and if you’re in college what classes you have this semester.