How Did I Get Here? Part 2- Purpose in Pain!

Continuing on with my story:

I went to the Mayo Clinic again, and I tried Tysabri IV for 1.5 years. No new flares but no improvements. It was discovered that I was JCVirus positive and was at risk for developing PML,  a deadly neurological disease. So, I stopped Tysabri, and started oral Tecfidera. I stopped after about 2 months due to GI side effects. I chose not to take anymore drugs for MS. I felt there was nothing else I could do. I had faith in Jesus, but I was definitely being tested.

I didn't know what I was going to do?? Being very disabled, I just lost my nursing job, lost my independence, and lost my ability to walk, talk, or drive! I couldn't walk without a walker, couldn't talk and communicate very easily. I felt alone and stuck. My world became very small. I didn't want to see anyone, and I didn't want anyone to see me like I was. I guess you could say I was feeling sorry for myself. But, honestly, I really couldn't do anything!

Over the next 4 years, I isolated myself from people. I prayed and immersed myself in the teaching of God's Word. I needed to have a purpose in my life. Everyone does. I was a caregiver and loved spreading the gospel!  I am a good listener and helper. Everyday I would ask God what he wanted me to do, and how could I use my spiritual gifts?

I finally got my answer! He showed me! I learned about Global Media Outreach(GMO) through a pastor I watch in Hawaii. In those 4 years, God had been preparing me for this! I applied to become an online missionary(OM), and was accepted!! This was perfect for me as I didn't have to leave my house, I could type with 1 finger, I could use my gifts, and best of all, it gave me the purpose that would eternally change people's lives. I've been to places all over the world and have met so many people!
I've learned so much, and I've touched many lives! They have touched me, too!!

Gradually, I became more confident and started going to a swimming class at the YMCA. It is a great group who understand what I'm going through, because they all have MS, too. I also met my friend, Sue, who is a Physical Therapist. She has come to my home so many times to help me! She has helped me get out of my comfort zone.

I now go to a Bible study with her at her church, and I started going to a Bible study at my church! The women have been so welcoming and accepting. Very generous, too!! Many of them along with my swim group, donated to helping me go to Mexico! I'm forever grateful for them all!

I began doing some research on treatments for MS. I started seeing my husband's cousin, who is a doctor. He is so knowledgeable and really wants to help me. He was open to searching for the cause and trying alternative treatments like the ketosis diet and the PK Protocol. We drove 2 hours to his clinic to have an IV therapy. They welcomed us to stay overnight so we could do another IV therapy the next day. We tried  many things.

When I was researching, I found HSCT  (hematopoietic stem cell transplant)! It has stopped the progression of MS in about 70-80% of people. So, this was the next step for me! More about HSCT in my next blog!!

How Did I Get Here?

                                                                                             

That's a good question! When you're young you never think you'll have bad health. But, I did! I thought I'd always be healthy!
When I was young, I was very active! I was in diving, gymnastics, a hockey cheerleader, a figure skater, a drummer. I went to Bethel College and got my BSN.
I also was a hockey cheerleader and taught figure skating when I went to Bethel. I attended college from 1983-1987.

I had my first symptoms in 1987.

• 1987: Optic neuritis- pain in eye. Doctor said it was an early symptom of MS, but that I probably didn't have it. It improved with oral prednisone.
• 1988: Optic neuritis. No treatment as I was pregnant.
• 1991: 1st big exacerbation. Numbness/tingling in legs. Buttocks to feet. I had received Hepatitis B vaccine, 2 of 3.
• 1992: Numbness/tingling started in feet and moved upward to my trunk, chest, upper extremities. Extreme tightness, band-like feeling around my chest. Difficult to breathe. Difficult to move hands and fingers. Temperature problems. Cold felt hot, hot felt cold. I felt like I was vibrating. Electrical- type feeling down my spine into my feet and hands. Diagnosed with MS in the ER by symptoms and MRI. Many plaques on brain and spinal cord. Treatment with high dose Solumedrol. Tapered with oral steroids. Xanax for chest tightness. MRI changes. 100 % recovery.
• 1992-1993: Recurrence of same symptoms. Treated with IV steroids.
• 1993-1994: LE numbness/burning. Bladder incontinence. Slurred speech. Numbness in throat and mouth. Improved with no treatment.
• 1993: Same symptoms. Pretty bad. Treated with high dose Solumedrol, tapering prednisone. Xanax for chest tightness. Lasted 3 months. Decreased work from full time to .8 days per pay period. Recovered almost completely.
• 1993-1994: Left foot/ leg numbness. Slurred speech. No treatment. Resolved in 1 month.
• 1994: Numbness in throat and mouth. Lasted 1-2 months. Kids had chicken pox.
• 1996: LE numbness/ weakness.  Left eye optic neuritis. Resolved with oral steroids.
• 1997: LE numbness. Legs heavy. Trunk numbness. Lasted 3-4 months. Treated with oral methylprednisolone. Started on Avonex injections 1/week.
• 1998: LE numbness, wek, heavy. Became difficult to walk. Lasted 1.5 months. No treatment.
• 1999: Numbness upward movement feet to trunk and chest. Very fatigued. Difficult to breathe. Legs spasticity at night. Optic neuritis. UE throbbing pain. Started on Copaxone  injections 1/day. Hydrocodone for pain. IV and oral steroids.  Lasted 2 months.
• 2003-2004: Left ear fullness. Left sided numbness/tingling. Chest very numb with tight band-like sensation. Difficulty breathing. Right side eventually became numb, heavy. Difficulty walking. Dragging feet. Numb head. Throat and mouth numb. Bad balance. Uncoordinated. Falling over. Difficulty with eye movement. Vertigo. Dizziness. Vibration sensation throughout head and body. Severe neck pain muscles with heavy head. Buzzing. Very bad migraines. Head pressure. Extreme fatigue. Lasted 7 months. I wish I could turn these sensations off. I feel like I'm going crazy! I need help!! MRI showed multiple periventriculr lesions on cerebrum, frontal lobe, cerebellar and brain stem lesions. Xanax for chest heaviness, anxiety, sleep. Was unable to work as a R  for a year. They were nice to give me a desk job during this time. July 2004: Went to Mayo for help/second opinion. Returned to work in SICU after a year, 2005? Eventually got a day job in the Colon-Rectal Clinic.
• 2010: Had a very bad exacerbation. I had a influenza vaccine 2 weeks prior. My husband found me unconscious, sweaty, unable to move. Taken by ambulance to hospital. My labs were way abnormal. I was in metabolic/ lactic acidosis, heart failure(cardiomyopathy), encephalopathy. They thought I was having a heart attack. They thought it might be an infection. They didn't think it was my MS! I  couldn't talk or move. I was intubated and having heart arrythmias. I was hospitalized 30 days! I never was treated for an MS flare. I had to learn how to walk and swallow again. 

2011: I continued to get worse. My walking became worse. My talking became worse! I called my neurologist and the nurse said I was just anxious and to take more Ativan!(#@&*!) Angry for not listening to/believing me!! (When I was a nurse, I always listened to and believed my patients.) I again went to the Mayo. The neurologist read my MRI from when I was in the hospital, and said it was the worst case of misdiagnosis he had ever seen!! I was definitely having a brain stem flare up! Even I knew from nursing school, your brain stem regulates your atomatic functions such as your temperature, heartbeat, and breathing. They missed the brain stem lesion on the MRI!! It was to late for treatment eg. Plasmapheresis.😣 I couldn't believe it!! I was now fully disabled. Thank you very much. Only able to walk with a walker! Have severe ataxic speech, severe ataxia, bladder frequency /urgency, etc...

I worked as an RN at the VA hospital 24 years! I had to retire early on disability. I was depressed, scared, and angry. What was I going to do now at 46 years old??
To be continued..........

                                                         EDSS- Disability Score!!

                                                          I'm at 6.5!!!! Not good!!

Gus, our Goldendoodle!

                                                            Puppy Gus!

Today, I want to talk about pets, specifically our dog! What to do with Gus while we're gone for a month? Well, our son Alex has graciously agreed to live at our house and care for Gus while we are in Mexico! What a relief! It's hard enough being away from our family and yes our Gus. Just knowing he's with someone who loves him is such a relief. We've had him since he was a puppy and it's going to be hard for us to leave him!  He is with me all day long! Maybe we can Skype him😀??  
I know he's just a dog, but he is like a human to us. A part of our family! The sad part is when we get home, after undergoing chemotherapy, I can't love on him (hug and kiss) for probably a few months. There is too great a risk for infection. You know, dog germs😷!! I will have to be very careful and wash my hands after petting him. Also, keeping him clean will be a challenge. Sorry Gus, you can't be in the bed with us!
But, it's all worth it as he brings so much joy and cuteness to our lives! He loves us unconditionally, and that alone should decrease my stress😀. Hopefully he'll help me to heal after my treatment. 
Thank you Alex!! We're grateful for you and your willingness to help! I'm at peace knowing that you'll be here taking good care of him:-)

                                                                   Gus and me!

                                                   Alex with Gus getting bigger!

                                             Alex with puppy Gus🐕 Aren't they cute??

MRIs and Hair!!

                 We leave in 6.5 weeks!! 

I had my MRIs, all 4 of them! Brain, Cervical Spine, Thoracic Spine, and Lumbar Spine!

I had to lay perfectly still for over 3 hours! It was not easy, but I did it! My behind was sure sore😀. I didn't even have to go to the bathroom!! That was my biggest fear! I will email the reports to Mexico tonight. 

I'm just continuing with taking my supplements and trying to gain weight. I gained 0.5 lbs in the last week. Yay!!

I have an appointment next Friday to cut my hair! I've been growing it long so I can donate it to Wigs for Kids! I'm still trying accept that eventually I'm going to lose it. I have had so many fears about how I will look, bald. But, I keep thinking that it is going to a child who really needs it, and mine will grow back. I just don't know how it will come back?? Curly? Straight?Thick? Thin? Grey? Hmmm...???

If anyone would like to donate to me for cutting my hair, that would be awesome!!

https://www.youcaring.com/kimparnell-713345

Thanks for supporting me! I appreciate all of you!

I'm just continuing with my Bible studies on Tuesdays. And our couples Bible study with our friends! It's great to have such caring support, especially before we go!

Swimming on Thursday, and my online missionary work! I stay pretty busy, even though at times I'm so tired and just want to stay home. 

Be blessed💕

Preparing to go to Puebla, Mexico to have HSCT!

March 3rd, 2017

Hi everyone who are following me on my journey to Puebla, Mexico!! Thank you so much for coming with me! I appreciate all of you who supported me financially and who continue to support me in prayer!

I decided to try my hand at blogging my experience so I can look back and remember this!! First of all, I want to thank my Lord Jesus who goes with me wherever I go! I want to thank you, my supporters who may be interested in what I am going through. And lastly, I thought this would help others who are considering HSCT for MS.

Things I have had to do to get ready to go:

1. Researching about HSCT. Asking a lot questions!
2. Applying to Mexico to have HSCT.
3. Getting accepted! Yay!!
4. Flights booked.
5. 1st night hotel booked. (We'll be staying in an apartment the rest of the time.)
6. Doctor appointments made and done. (Neurologist, GP, Dentist, cleaning).
7. Fundraising ongoing!
8. Shopping for a whole list of items needed.
9. Taking a lot of supplements prescribed by my doctor to get my cells in the best shape for chemo.
10. Working out at the YMCA 1 day/week. MS swim class 1-2 days/wk.
11. Trying to gain weight! Thanks to my husband who cooks for me, and thanks to my friends for encouraging me to eat!
12. I am getting my hair cut short and donating it to Wigs for Kids! I will eventually lose my hair due to the chemo!
13. I will pack as it gets closer to going.

Thanks for coming along with me!! I hope to stop the progression of my MS!! 
#prayingformiracles