My Story Continues...

I found out about a Documentary on Netflix called"Unrest" https://www.unrest.film/  from my friend Terri (Thank you Terri).  I watched it in January of 2018. As I was watching it my thoughts were "Hey, that is me!" Specifically, the mobility issues Jennifer Brea was having in the film.

When the fatigue I experience is at its worse my legs go on a spectrum of dragging one leg, shuffling both legs, trying to drag both legs across the floor to not being able to take any steps, stand up on my own or move at all. I get stuck and can't take any steps or move. Extreme Stiffness of my spine, legs and limbs accompany the pain and severe mobility issues. Physical fatigue and brain fatigue are also playing a big role in how I am feeling. When I am at my worst I often find it takes extra effort to speak and to breathe in and out. I don't have enough energy to talk. It physically hurts my inner system to take in breaths and breathe out. My Husband has to help me move to the bathroom or get to bed.  After lots of rest I return back to my "normal".

Since learning about Fibromyalgia and the doctor putting it in my chart notes in 2015 (with out telling me). I've been blaming the mobility issues on Fibromyalgia and have just been dealing with all these symptoms.  I've asked multiple medical professionals about the mobility issues and had never got a straight answer. Actually, no answers at all. In 2016 my primary doctor finally (after asking about it again) referred me out to the OHSU Fibromyalgia Clinic. It was a one time appointment and nothing was mentioned about fatigue or mobility issues. They said I didn't need to do any physical therapy with their clinic.

Later, I discovered that Salem has a Fibromyalgia Clinic called "The Fibromyalgia and Neuromuscular Pain Center of Oregon". At the Fibromyalgia Clinic I asked the doctor there specifically about walking issues and the doctor told me that the mobility issues did not sound like Fibromyalgia to him. My Insurance ended up changing so I was unable to keep attending this clinic.

Shortly after watching Unrest, I decided it was time to go back to my primary doctor so I made an appointment to go in and ask about Chronic Fatigue Syndrome. This is also referred to as Myalgic Encephalomyelitis. In the 13 years of dealing with Chronic pain and fatigue, I have never had one person in the medical field bring up the idea of Chronic Fatigue Syndrome. The Fatigue is definitely debilitating at times. I deal with fatigue every day along with chronic pain and stiffness.

At the primary doctor appointment he basically said that Fibromyalgia and Chronic Fatigue Syndrome are the same thing. What!?  And then added that "hopefully in 10 years we will have more information for you." He also added "that we may have exhausted our resources". He once again referred to Fibromyalgia and now included Chronic Fatigue Syndromes in the "Garbage Can Diagnosis" category.

When I was at my Women's Health appointment months later I decided to try to seek a different avenue and see if I could get a referral for a specialist to possibly get a Chronic Fatigue Syndrome diagnosis. The Nurse Practitioner was helpful and gave me a referral for a Rheumatologist.  I got my referral in October and spent three months trying to find a doctor who would agree to see me. My referral ran out in December 2018. My friend had given me a name for a good Rheumatologist that her mother had seen. After weeks of back and forth contact the doctor personally called me and said she would not see me, she didn't want to waste my time.  I truly appreciate her honesty but at the same time it was really frustrating not being able to find someone who will see me. I even called OHSU. The Rheumatologist Department of OHSU told me that none of the doctors in the department treat Chronic Fatigue Syndrome. I was kind of left in shock. I asked it anyone at OHSU treat it, the lady transferred me to the Operator. The Operator looked it up in the directory and found one name. I called the number and the name ended up being a dead end as well.

December came and went and the Rheumatology referral expired. In January, when I called Siletz Contract Health to see about getting some Acupuncture approved. (I haven't tried Acupuncture yet but at this point I am willing to try anything to get some relief). I briefly brought up the expired Rheumatology referral. I was advised by Contract Health to have the referral resubmitted to Gate keeping and that they would try to help me find someone who will see me. When I received the Rheumatology confirmation letter in the mail I called Contract Health again. I got the exact same person and this time I was told they didn't know of any doctors that could help me and said "I'm sorry, I am not much of any help." The conversation ended with "It is the referring physicians responsibility to find someone who will see you."


I have to remind myself that I have been here before. After the initial auto accident back in 2006, it took over 2 years to get to the root of the problem when I was struggling with severe symptoms. I went two whole years not knowing what was going on in my body and living and dealing with crazy scary symptoms. Two whole years of going from doctor to doctor, being told over and over again to "Give it time." Two years of living with chronic pain and the feeling like I was going to fall over at any moment. Two years and then I finally was referred to a Nurse Practitioner at OHSU who recognized the symptoms and referred me out to an ENT with the suspicion that I had inner ear damage from the initial auto collision.

I have to remind myself that once again I am material for a Miracle. Material for God to work through and build a bigger testimony through my life. Grow in a deeper faith relationship with Him as I wait. Continue to trust in the Lord to get me through this unknown season. God knows what is going on in my body and exactly what and who I need to see to get answers and help. Do I want answers or peace? Well, I want both but right now in the waiting time I will take some peace please!



After the first two recommendations and OHSU didn't pan out for the Rheumatologist referral I decided to do an online research for physicians who treat Chronic Fatigue Syndrome (The Myalgic Encephalomyelitis term is not as mainstream here in the U.S. yet).  I called some of the local doctors and again had no luck. I was quite surprised by one of the names that was pulled up on the online research.

It was a doctor that we use to go to church with. He was an Endocrinologist so I wasn't sure why his name was included. I thought about it for a while. Later, I kept thinking I should get in touch with his wife and ask about it. I put it off. I would think about it again and again. Finally I reached out. We got together early December and had a good chat. I ended up emailing a Health Summary that included a Health Time Line and a detailed symptom list.  I had put this together from a tip I had read from an online support group. He agreed to review it over the Christmas break.

I was stuck in bed one weekend so I did a lot of praying and asking for wisdom in the midst of not feeling good.  People have been telling me I should just get a new primary doctor and that I need to be under the care of someone who is more supportive.  I agree. I have been putting it off over the last year because I haven't been doing good, I lack the energy and just the thought of trying to find a different doctor sounds stressful.

After praying I had the thought to call my clinic and ask what the process is to switch doctors. I was transferred to a person and ended up having to leave a message.  Later, a lady called back. She wanted to know the reason so I was able to explain the whole situation. She said they don't usually allow people to switch doctors just for a second opinion. I never thought of it as wanting a second opinion. I just need someone who will listen to me, give me a diagnosis and help me out. She then said that the information will be given to the Administration and that I would receive a phone call from her. Wow! I don't want to get someone in trouble, I just need help.

A week later I got a letter in the mail dated February 7th. The letter stated that their Administration had reviewed the concern and at this time they are unable to change my provider. The letter ended by saying that they encourage me to schedule an appointment with my current doctor and discuss my concerns and requests.

It was funny because the very next day I got a card in the mail from the friend after her husband reviewed my Health history. The actual funny part was that one of the doctor suggestions was a doctor at Salem Clinic. She noted that she thought I was a patient there but wasn't sure the process of switching doctors. I know now!

I had a thought to have Shawn take a video of me trying to walk to our bedroom as I struggled to walk. (February 18, 2019). I was in shock when I viewed the video for the first time. I had no idea how bad this looks when I am trying to walk. In my mind I feel like I am slightly shuffling. I actually felt extremely bad for my Husband having to see and deal with this on a daily basis.


Later in the month, I was in bed all weekend dealing with extreme fatigue. Sunday, February 24, 2019, I was still laid up. My cousin had texted me and asked how I was doing. I gave him the update and I remember leaving out that my stomach was hurting because I thought it was just a minor thing. Later, it got worse and worse. I had the thought that maybe it was just constipation and so I needed to just wait it out. I also had the thought that maybe it was menstrual cramps that were starting. (Although I remember thinking that wasn't due for another week) I dealt with the pain the best I could. It increasingly got worse and worse. I would get up and go to the bathroom still thinking it possibly was just needing to have to go the bathroom. I did this 2-3 times. The last time the pain flew off the charts. I didn't know what to do with myself.

I called for Shawn and told him the pain was really bad and I didn't know what to do. The pain was so high I felt like I could combust at any moment! He got me back to bed and I laid stretched across it. I was in so much pain I was gripping a pillow and holding on for life. It hurt to talk but I mustered out the words to call my Mom.  Seconds later I told Shawn to call 911. It was so bad I couldn't wait for my Mom to get here. He called it in. I had my eyes shut and was squirming from the pain. The pain was like a permanent cramp in my abdomen. The cramp was not letting up and releasing. I found myself trying to do a deep breathing technique and try to be as relaxed as possible.  Nothing was helping and the pain was not letting up.

The paramedics arrived. I heard female voices so I was curious if one of my classmates from my childhood was on duty. Nope. They checked me out and administered medicine while I was draped over the bed.  Thank God! I had no energy so they had to physically move me over to the side of the bed and to sit me up.  I couldn't walk so they had to help me out of the bed and into a wheeled chair. They decided I should go to the hospital and get checked out. Down at the hospital, I had blood work done and an abdomen CT done. After the results the doctor sent me home.

Since the ER Visit I dealt with a three week flair of being stuck in bed and having small windows of time of being able to walk and then becoming stuck (not being able to walk/take any steps) in the kitchen or bathroom and needing help to move and get back to bed. This video is from March 3, 2019. It was a very long three weeks and a very trying time.


I am thankful that after the three weeks the window of being able to walk became bigger and bigger. I slowly worked on a blog post about the experience and processing the emotions of sadness that came along side of being laid up in bed, not being able to walk and the isolation. To read more about those three weeks and dealing with the sadness click on the following link: Making It Through Sadness

Finding a Diagnosis

All this time waiting and all this time trying to find different avenues of getting to the right doctor, to a doctor who would actually agree to see me and most importantly listen to me. I ended up with two new doctor appointments in the same week and within two days from each other. How amazing is that? God's timing for sure.

March 13, 2019. New Doctor appointment day at a Center here in Salem. I got there early to fill out paperwork just as they asked. The doctor came out into the lobby to greet me. I told her about the "Health Time Line" and "Symptom List" I had put together and printed out for her. She took it from me right away and left the waiting room.  She came out a second time and talked some more telling me an odd story as I was trying to fill out the paper work. Later, she said the "Time line" was a gift.

We went back to her office and she had me sit in a really comfy rocking chair. She asked a couple of personal questions to break the ice and then she talked at me for two hours. The office had bright lights, she sat very close to the side of me (that stresses my neck from having to twist it to try to listen).  My eyes don't seem to like being that close to people in conversation as well. Her office blinds were open so the constant movement of the cars passing by didn't help. (I only mention this because this all contributes to how my body becomes over stimulated, fatigued and decides to not function as it should) At one point I asked if I could move my chair from not facing the window.

The doctor had blank pieces of printer paper and explained all sorts of things ranging from Mitochondria to Free Radicals and Inflammation. In the end she said my recovery would be from a year to two years long. She said I needed to start a Supplement Package and to budget $150.00 a month for it. She added that it would take at least three months or more to see a difference. She also mentioned that she believes the Vestibular Disorder, the Inner Ear issues may not be fully resolved and may be contributing to symptoms as well. She said there is a doctor in Texas with a four year waiting list that may be able to help me as well. She added that I need to go to a Gym and work with a specific trainer who has the knowledge of what I am dealing with. I tried to ask about a diagnosis and she said she doesn't like to use labels. A lady poked her head in the door and mentioned something and that kind of ended the appointment. The doctor ended the appointment by saying to go home take a deep breath and to not give up on hope.

This was a lot of information. I was beyond my limit of taking in and processing information. I could follow all that she was saying but if you asked me to repeat verbatim what she explained or explain her notes and drawings I wouldn't be able to. The Fatigue was getting bad and I felt done.

As I attempted to leave her office I got half way down the hallway and my legs completely stopped working. I was stuck in the narrow hallway leaning up against the wall. I let them know that I needed assistance. Someone mentioned an office chair. I said that we do that at home all the time when needed. The male nurse wheeled one straight in front of me and left it. I told him that I can't move and that he would have to position it directly behind me. My back was very stiff and it hurt a lot to try to bend my body specifically to try to sit down. He pushed me to the waiting room and made an unappreciated comment of just leaving me in the middle of the waiting room. He was joking but I replied with a "It's not really my personality to be left in the center of the room"

He left me in the waiting room by myself then shortly returned as I waited for my Mom to pick me up. He sat in a chair in front of me. I tried to ask him questions. Once again, I tried to ask about what I could tell my family and friends of what is going on in my body (a diagnosis). He once again made an unappreciated comment saying something along the lines of you say, "I am Amber and... and I am trying to get better. (He said a lot more but I was too fatigued to remember...)

When my Mom arrived, he pulled me out the front door to my Moms vehicle. As he tried to pull me up over the door floor plate someone asked if he needed help. He replied with a "No, this is why I go to the gym." My Mom got me home and I got a long nap in.

Diagnosis Day

Two days later, on March 15, 2019, Shawn and I headed over to Siletz to see a new doctor, Dr. Dorris at our Siletz Tribal Clinic. I had learned about Dr. Dorris from attending a 6 week class called "Wisdom Warriors" that my  Tribe was hosting for people who deal with Chronic Illness.  My brother Levi had screen shot and sent me the information from online. I gradually shared more and more of my story and finally after one session I explained the severity of it. The Facilitaor of class told me that I need to see Dr. Dorris.

I arrived early as they said there would be paperwork to fill out. When I checked in there wasn't. When we were called back we went into an examination room. There was a slight miscommunication as the Nurse said the appointment was for a consultation for Acupuncture. What!? The nurse changed the information in the computer. We chatted and I tried to explain the situation and the complexity of what is going on. I let the nurse know that I had a Health History and Symptom print out that I had put together.

The nurse told us that Dr. Dorris would like to see us in her office. We walked down the hallway and entered her office with a friendly greeting. I sat in a chair facing her desk and Shawn sat on a couch behind me. I can't remember all the details of how the conversation began.

Dr. Dorris was very kind and compassionate. Together we went line by line over the Health Time line. She asked me questions. She asked me clarifying questions about the time line. She wrote notes on the print out I gave her and she also took more notes on a separate piece of paper. She gave me a tablet of paper to write down all of the names of previous physicians and specialists I have seen. She wants to request medical records so she can review them.

Dr. Dorris spent an hour and a half with us listening, talking and going over my Health History. She left us in her office to go take care of an acupuncture patient for a few moments. While she was gone she had me write out what typically happens when my legs stop working. She said to call it an "Episode".

As she returned to her office, she said "I know what you have!" She had a print out in her hand. She read over some of it and called it "Stiff Person Syndrome" She said she didn't want to give all the papers to me because some of it is scary. Dr. Dorris wrote it out on a piece of paper and handed it to me over her desk.



She pulled up my Clinic File on her computer. Since I was put on Disability and started receiving Medicare I stopped going to the Siletz Tribal Clinic and sought out a doctor in Salem because of the long drive. My file didn't even specify that I was a Tribal Member. She got things updated.

She wants me to get blood work done. Evidently, there are specific tests that can help determine if it is indeed Stiff Person Syndrome. She said they can be expensive. She called in the Health Director, Lisa Taylor, to get permission to have them ordered.  She popped her head into her office and they chatted a bit. She is also going to be sending me out for a Nerve Conduction Study. She is putting me on a medicine to see how I respond to it.  She said to take it at Breakfast, Lunch and Dinner and a higher dosage before bed time to help with sleeping. Later, as we were talking and wrapping things up she also added that she hopes that I don't have this.

When it was time to go I could barely stand up from the stiffness in my spine. I was struggling to move and walk. Dr. Dorris saw the struggle and said she was going to order me a walker. She asked if I wanted one with a seat. I said yes. She had a Nurse bring in a wheel chair and he wheeled me out to the lobby. The nurse was very kind and professional.

While we were waiting at the pharmacy, Dr Dorris came back out to the lobby to give us the Nurse cell phone number to send the two walking videos to so she could have them. She said to Text "AW for Dr. Dorris" with the two videos so they are left confidential. She scheduled an hour long follow up appointment for April to go over the test results and to talk more.

Diagnosis Day March 15, 2019

The very next day I discovered that March 15th is "Stiff Person Syndrome Awareness Day". The day I went to a new primary doctor and was introduced to Stiff Person Syndrome was the actual "SPS Awareness Day". I thought that was pretty funny an awesome. I love God's timing.

By Laura Kassem

More information on SPS and the Awareness Day on March 15th


Peace and Perseverance

So, how do we seek and maintain peace in the middle of pain, in the middle of a medical maze, in tears and frustration, in all the waiting time, dead ends, doors shut in our face and the constant unknown?

We can seek Peace in the middle of the unknown by holding onto God's promises of peace. God promises peace to His people. (Psalm 85:8Isaiah 26:3John 16:33,  John 14:27Romans 14:172 Thessalonians 3:16). Click on the links, these verses are all so good!

He is the Prince of Peace! (Isaiah 9:6)  His promise is that "The peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. " Philippians 4:7. He will keep our minds at peace. It is so easy to loose hope and peace and want to give up in the midst of medical and life frustrations. We need to keep a mind set of Perseverance that will help us keep going no matter what happens. We can have this mindset because we know God is in control.

We keep persevering and doing the best we can to move forward and find answers. We do what we can and trust God with the rest. Suffering produces perseverance (Romans 5:3-4James 1:2-3Colossians 1:11) Click away, these are awesome verses on Perseverance! I love all of these verses. They have helped me over and over again.

Pacific City!
Have you ever heard of the term "The medical Maze"?  We go from doctor to doctor with little to no help. We go to doctors only to leave with no answers. We try to get into doctors and they won't see us. We find ourselves with doors being shut in our faces before even getting an appointment scheduled. We are told to "give it time". We receive bad bed side manners from medical professionals. We are told that the medical issue is not part of the Specialists expertise. We get leads and they end up being dead ends. We end up back at our primary doctors. This is what is known at "The Medical Maze."

All we have to do is keep trusting God with all of our heart and mind and he will make our paths straight (Proverbs 3:5-6) Prayerfully and eventually straight out of the Medical Maze.

Official Diagnosis Day

Monday April 22, 2019, I had my follow up appointment with my new primary doctor in Siletz. We went over the test results and Dr. Dorris gave us the Official "Stiff Person Syndrome" diagnosis. We talked about how the medicine has been working since the previous appointment. She wants to use the medicine that I am responding to get me to a more stable place. She even talked about possibly using a medicine pump if needed.

Dr. Dorris said no exercise until I am stable. She said maybe down the line we can try pool therapy. She wants to try an additional medicine to address and hopefully help with the mental fogginess (brain fog) so we will be adding that to the regimen as well.

The big surprise! She is putting in the required paperwork to see  if I can get a referral to be sent to the John Hopkins- The Neurosciences Consultation and Infusion Center in Maryland. My Husband and I were both shocked about that referral. I've read that it is the only one in the world that specializes in Stiff Person Syndrome. Dr. Dorris gave us a little print out for the John Hopkins Center.

We waited for the Pharmacy refills. When we were leaving I told Shawn I don't know if we should cry or celebrate. Celebrate on finding a diagnosis or cry because of the rarity of Stiff Person Syndrome and all that it may continue to bring our way.

We went to Newport to regroup, look Stiff Person Syndrome up online including John Hopkins, we made some texts and I called my Mom. We decided to pick up some food at Grocery Outlet and head to Pacific City. All I could think of was that I wanted to get my feet in the sand. We decided that Pacific City would have the easiest access to the beach.
We saw surfers, hang gliders, a man blowing Ginormous bubbles and a nice beach fire.



The Joy of the Lord is my strength. The Journey is not over. Just because a diagnose was given doesn't mean everything changes for the good or change comes over night. It doesn't take the pain and suffering away. It takes time to process the new information and put into practice the advice that was given for the goal to get back to a more stable place with the use of medicine and not exercising. It takes time to see what dosages of medicine work. It takes time for paperwork and for referrals to get approved and put in to place. It takes time for Insurances to hopefully be approved. It takes time for new doctor appointments to be scheduled. It takes time to see what options are out there as far as treatments. It take time to see what I am eligible for.

I have been praying for a very long time for this day to happen. My Husband has been praying. My Family and Friends have been praying. This was a huge answer to many prayers and I want to be sure to share my gratitude to God. His timing is always perfect.  I want to extend my gratitude to those who really dedicated themselves to praying for me. 13 years is a long time to be dealing with Chronic pain and Chronic Illness.  I know at least 9 out of the 13 years has included the "Stiff Person Syndrome" symptoms. It has been a long time to be living in this unknown space. Life has been challenging but God has always been faithful.

The peace and perseverance of God continues to keeps us going. The joy of the Lord helps us enjoy the day and day living in the midst of the pain and suffering and as we process a new diagnosis and as we wait for the new chapter to begin.

One in a Million

This is Dr. Scott Newsome, founder of the only center in the world for Stiff Person Syndrome at the John Hopkins Center in Maryland. This video explains some of the basics of Stiff Person Syndrome including that this effects one in a million.


The following are some links that also describe Stiff Person Syndrome:

NORD National Organization for Rare Disorders- Stiff Person Syndrome/
Wikipedia- Stiff Person Syndrome
Stiff Person Syndrome
The Tin Man
GARD- Genetic and Rare Diseases Information Center
National Organization for Rare Disorders

I just had to jump up on the Zebra for a picture!

“When you hear the sound of hooves, think horses, not zebras.” This phrase is taught to medical students throughout their training. In medicine, the term “Zebra” is used in reference to a rare disease or condition. I've learned this from the "Spoonie" and Chronic Illness Community on Instagram and have even heard the reference on a Grey's Anatomy episode.  We took the littlest Niece and Nephew to the Albany Carousel after my first appointment and the diagnosis of Stiff Person Syndrome. This is where the picture was taken.



This is the Amplified Version of Philippians 4:13. It is perfect. I love how it expands on how it is God who gives me the strength, confidence and peace.  If He is calling me to walk through this diagnosis then He is the one who will give me the strength and grace to do it. There is no way I can handle any of this or walk through this with out the Lord in my life. I am 100% sure of this.

"I can do all things [which He has called me to do] through Him who strengthens and empowers me [to fulfill His purpose—I am self-sufficient in Christ’s sufficiency; I am ready for anything and equal to anything through Him who infuses me with inner strength and confident peace.] " Philippians 4:13

Thank you Lord that You infuse me with inner strength and confident peace to make it through all of this. I don't know what the future holds but I know that all I can do is take one day at a time and trust You with all of the other details. You are with me and You will be with me where ever I go or where I need to go in the future. Thank you that we are never alone. (Joshua 1:9 , Deuteronomy 31:6Isaiah 41:10Matthew 28:20, )

I encourage you if you are in a hard situation, full of unknowns and pain just keep holding on to Jesus. Keep talking to Him about your needs and desires. Keep holding on to Him. He is always listening and always there for you and with you. He knows what the future holds so we can take advantage of the here and now and find the joy in what today brings.

To see my original story (the 12 years prior to this post) click on the following link:
 "My Story"

This diagnosis has been extremely challenging to process. I have been slowly finding ways to come to a place of acceptance and ways to help me move forward. Click on the link below to read 5 ways that have helped me process this new diagnosis:
Making it through a New Diagnosis

Thank you for reading!

Love and Prayers ❤
-Amber



Comments

  1. Hi Amber. This is Sharon. I loved reading your "Sunny Storm" blog. What a Kind God we have! He loves to give good gifts to His children. I love how your experience revealed how in-tune you are o God's presence and what He is teaching you in your own personal storm. It also reminded me of the song we sing at Salem Heights, "Through the Storm, He is Lord, Lord of all."
    Dr. Lutzer spoke on "How to Survive a Storm" from Matt. 14:22-33 on May 5th. You may be able to listen to it on the church's website. I loved his point that the water that threatens to be over our head is ALREADY under His feet. Yes, He is Lord of all! And we love Him for it.
    You are a blessing to my heart and I continue to pray for direction and healing and continued peace. Sending hugs! Sharon

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    Replies
    1. Thank you Sharon. All the prayers are very much needed. I am thankful to have met you and I enjoyed our study group. I will look up the teaching. ❤

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