Making it through a New Diagnosis.

I haven't really cried until today, May 2, 2019. Sitting in the parking lot of Trader Joe's with my Husband. We had just finished a bunch of grocery shopping and had been talking about life and the different possibilities of the future in the car while driving from store to store.  We had just spent a bunch of money, working on meal planning for the entire month to save money, time and energy. Way in the far back is both a wheel chair and a mobility walker. I chose to use the walker in Trader Joe's and the wheel chair in the bigger stores.

The emotions arose within me and the tears started to flow. My Husband noticed and asked me what was wrong. All I could do was look at him and finally after gaining strength to speak, I uttered "I don't want to be a burden."

March 15, 2019 was the new primary doctor day with Dr. Dorris.  A hour and a half later and I was told "I know what you have." My doctor told me that she believes that I am dealing with "Stiff Person Syndrome". She had a print out and briefly read a little. She told me she didn't want to give me the print out because some of it is kind of scary. She ordered me a walker as she saw me struggle to stand up and had to be wheeled out by a nurse in a wheelchair when the appointment ended.

A month later I returned with the tests done including a Nerve Conduction Study.

The official Diagnosis Day was April 22, 2019 with my new doctor. She was elated that I have been responding to the medicine. She upped the doses and added a 2 am dosage to get me through the morning hours. She is adding an additional medicine to try to help with brain fog. She said no exercise at this time. The goal is to get me to a more stable place.

Leaving the Siletz Clinic I told my Husband I didn't know if we should cry or celebrate. It takes me a long time to process things so it isn't a surprise to me that I am still taking it all in. My doctor is planning on sending me to the John Hopkins Center in Maryland.

I've heard the "Stages of Grief" before. I know it takes time to process new information. I know everyone handles hard situations differently.

I am responding to the two new medications and yesterday during the day was the best day I have had in a really long time. The sun was shining, I had some energy. Since owning a house I have discovered that I love to work in the yard and that it is relaxing and a stress reliever for me. I can get lost and the time goes by so quickly being outside and making the yard look pretty again. My Husband mows, I take care of the flower beds.  I love seeing all the different flowers bloom and the progression of each variety. This has been helping me process the new diagnosis. (Although, I have to be careful and not over do it and end up in a flare and in bed the next day.)

I love picking flowers and making beautiful flower arrangements for our kitchen table. I am on my knees the majority of the time so I am not physically exerting myself as much as going for a walk (which I am unable to do at the time being). I'm hoping this okay by my doctor. This for me is one way I process things.  I can escape all the worries and what ifs and get lost in creating something to look lovely with immediate results. I also enjoy listening to audio books as I do yard work to help bring encouragement and perspective back into my life.

I was even able to make it to my Niece's tball game using the walker. I know I over did it but some things are just worth it.

I noticed I had a message on my phone from May 30th. I noticed it was from Maryland. I wasn't ready to deal with this just yet. I finally listened to the message. I also got an email from the same lady from John Hopkins with the steps needed to get me in for an appointment. I haven't been ready yet. I haven't called back yet. I will call tomorrow and work on the paperwork sent in the email. ( I stayed true to this and took care of the paper work the very next day.)

I guess I just needed a good cry, some alone time, some outside time, some creating time, some sad time and some alone time with God.

My Husband is the best. God knew exactly the right man I needed and brought us together. He knew exactly what to say. We came home and put all the groceries away. He made the bed (Yay, clean sheet day!) And I was in bed by 8:30 pm.

I know I am not a burden. I just don't want to become a burden. A financial burden (specifically the money it is going to take to get us to Maryland and back, and however much time we need to stay there) or a bed bound burden where I can't contribute to keeping our household going including all the flower beds. I also don't want to be a burden to my family as they worry about me and possibly have to take care of me as well.

As I laid there in bed with tears still streaming down my face my mind went straight to what is the opposite of "burden"? I thought "light" and immediately thought of the verse.

Come to me, all you who are weary and burdened, and I will give you 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 is light.” Matthew 11:28-30 

God is our burden bearer! Jesus' burden is light. It always seems to come back to the basics of trusting God with the details of our life. I am learning this over and over. 

We are human and we have emotions. Things happen and we have to allow the time to process and work through our situations, our feelings and emotions.  

"Cast your burden on the Lord, and He shall sustain you; He shall never permit the righteous to be moved” Psalm 55:22

You Lord are able to carry my burdens and give me the daily strength and grace I need to make it through each day.

As for other people and my concern of being a burden to my Husband, Family and Friends. It also becomes a trusting God issue that He will continue to bring the right people into my life to help me. 

Bear one another’s burdens, and so fulfill the law of Christ” Galatians 6:2.

This is where Family and Community comes into play.  When God has lightened our burdens, He asks us to do the same for others. My job is to not worry about whether I am being a burden or not but that He will bring the people into my life to help when needed. 

I know that I have more processing to do. So far from my experience with doctors giving new diagnosis' (I have had more than one) I have found the five following things helpful.  

5 Ways to Process a New Diagnosis:

1. Give yourself time. 

2. Allow the emotions to flow. When they surface don't hold them back. It may be that day or weeks later. We are all different in how we process information.  Something later may trigger all the emotions of the new diagnosis. When we are alone and just have our thoughts our emotions may arise. 

It is okay to feel what you feel. Seek out a way to let them out. Cry, journal, pray, listen to music, cry on a friend's shoulder, talk to a loved one. Find out what ways works the best for you. This may happen more than once and that is okay too. Sadness is a relevant emotion to work through.  I've been dealing with sadness as I make my way through bad flares and the unknown, read more on How to Make it Through Sadness

3. Find ways to keep your mind off the "New Diagnosis". Whatever you are able to do at the moment. Sometimes we just need a break from all the new information. We may feel overloaded and overwhelmed. If you are able to find that thing that you can get lost in for a few moments or hours. Do it.

Try some gardening or light yard work, watch a movie, read a book, listen to an audio book, listen to music, go for a drive, create something, be alone, be out in Nature, go for a walk or run, do something nice for someone else. Do what brings even the littlest of Joy into your life and heart. 

4. Share your diagnosis only when you are ready and only to whom you feel comfortable with. 

5. Always remember that you are never alone. You are not the first person to walk through a new diagnosis. Seek out a support group or an online support group who share the same diagnosis. Ask questions. Seek wisdom from those who are walking the same path. Become your own advocate and learn all you can on what you can do to help with your new diagnosis. 

This is why I share. This is hard. I still cry. I am still processing. My physical pain is still not under control. I am still having some mobility issues. I still have days when I am laid up in bed. I still lack the energy to do all the things that I want to do each day. My Husband and I are still having deep conversations. I am still waiting for an appointment to be scheduled at John Hopkins. I am still trusting God to help me make it one day at a time.

I tell my story. I share all the mountains I have had to climb. I share because these words could (as Morgan Harper Nichols says) possibly become a page in someone else's survival guide. Your story can too.

To read the beginning of "My Story" click on the following link: "My Story"
And to read the updated "My Story" of the last year that led up to the diagnosis click on the following link "My Story Continues"

Special Note: If you feel like you are having a hard time and you are feeling stuck processing and accepting the new diagnosis, please contact your doctor, a pastor or a counselor. Please don't suffer alone and in silence.

Love and prayers ❤               



  1. Really really good post! I like the 5 steps to processing. I like the scriptures you have chosen. I'm sorry it is so hard. I am very grateful to hear you are responding to the medicine! Of course you have bad days! Of course you have flare and time in bed etc. So do I. I have had fibro flare after flare for 2 weeks now. I might have it calmed. I spent time in bed. I can't do yard work that is expected of me. I can't do housework or cooking that is expected from me. I can't walk the dog either. I can't drive anymore. You are not alone Amber. I lost a bunch of my life too but we let God give it back however He wants and We open our minds and create something NEW with God every day. He asks us to create with Him. So you just keep creating with flowers on your knees. That is God in you Amber. God is in you and living and breathing thru you. Keep your eyes on Him. Take just one step at a time. Always move forward if you can.

    Close your eyes when you are scared. But keep going anyway, especially thru the medical stuff and get it over with. Just keep your eyes closed and tell them not to hurt or scare you. They will make you laugh ��❤❤

    Always tell those medical people that you have enough pain already so they are REQUIRED to be gentle with you or you will be difficult for them. So ask them to be very nice to you. They will be!

    1. Thank you for your kind words and encouragement! ❤ I am so thankful for the flowers and writing to process everything.

  2. By the way the person commenting above is Magical Moment Maker from instagram.

    1. Jennie D? I've added you to both of my Instagram accounts. 🙂

  3. Hello just wanted to let you know that this article was a readers' fav on my Twitter feed for the week, and I've listed it in my Top Health Tweets compilation here. Keep it up!


Post a Comment

Popular Posts