The Immune Therapy is Working and Now I Have Proof!!!

I have had symptoms of Multiple Sclerosis since I was about twenty years old. I was diagnosed with what was said to be an “aggressive form” of M.S. The doctor did not give my husband and I a positive prognosis at all. His look into the future for us was husband caring for me and me living in a wheelchair.

Prior to Immune Therapy I had twenty lesions on my brain, Five lesions (some of them quite large) on my thoracic spine and  a  few other lesions on my cervical spine among other issues.

I have been taking the Immune Therapy Infeperium since July and now I have proof that it is working. I still have  twenty lesions on my brain but there has been no more progression of disease activity. 🙂 I still have some lesions on my spine but they are no longer getting worse. The radiologist wrote that “the previously depicted lesions shown within the thoracic spinal cord at the T4-T5 and T5-6 levels have diminished considerably in size and conspicuity.” He also wrote that “there is interval improvement in the appearance of the thoracic spinal cord at the T-5 through T-8 levels and stability of the intramedullary lesions at the lower levels specified.” He was also able to confirm the size  of the lesions on my cervical spine have “subsided considerably in size.”

The Immune Therapy is working!!!! I know I can tell a difference. I am actually  taking a break off the medicine for a little bit and although I still have much healing to experience I can tell I am doing MUCH better than I was prior to beginning this medicine. I am still driving, cooking meals, and still feel mentally better than I was prior to immune therapy.

I need to continue this treatment. I do not know how long I will need to remain on this medicine but I am beginning a GoFundMe account so I can continue taking this medicine. Hubby and I are able to contribute small amounts to the expense but this is not covered by insurance and is over and above the amount we pay for my insurance every month.  God has been faithful to provide for my family and I through “hurricanes and tornadoes” of life and He will continue to do so.

Thank you for believing with me and for me. Thank you for praying for us. Our kids and especially my husband walk this with me daily. They are soldiers in this fight too.

Love to you and yours,

Charise

Click here for the GoFundMe  link

To learn more about the treatment I am on visit: www.treatchronicdiseases.com

 

 

 

 

M.S. Awareness Day and What I Don’t Really Want You to Know

 

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Today is Multiple Sclerosis Awareness Day. To be honest, a part of me does not want you to know everything  I experience. Some of you, my friends, have Relapsing Remitting M.S. and some may only have a few attacks in your lifetime. I am so thankful for those who have that experience.  Others of you deal with your own battles in the trenches, M.S. related or not.

I happen to be one in the 10 – 15% of M.S. patients that have Primary Progressive. So, in spite of being only thirty eight years old my body has been aggressively attacking itself for over eighteen years. I did not get a diagnosis until at least twelve years into the attacks. I can relate to feeling like an elderly individual more than I can to a woman in her thirties. Yeah, sure, it is hard to believe. You see my size 6 body, my appearance somewhat neat and orderly and my rather large smile. I love to smile and love to make eye contact. It is sure hard to believe something is wrong.

What you cannot see is the inner battle of the constant unknown. Seasons, and temperatures, stresses, sounds and lights, almost anything can change my ability to move, ability to think clearly and so much more.  I have been doing amazing since beginning the Immune Therapy. I have been able to drive, stand up for longer periods in the kitchen, clean a little more and I am more emotionally stable but nothing is normal. Touch and I have a love-hate relationship. I love to hug and show physical affection but to hold my hand for long or rub my arm or leg can cause pain, numbing, and spider crawlies up and down my whole body. It’s a load of nerve craziness. Sexual intimacy is wonderful and still a priority with my spouse but it is like a delicate dance. I am fragile and can easily be injured. It is wonderful and exhausting.

          I may be walking well when you first see me and as soon as the sun is shining on me, my body warmth increases or any other number of irritations or stresses come my way I may be fighting to lift my legs and I may show signs of instability.   You might not be able to tell  unless you can read me really well. On my harder days and seasons, it is all over my face and body.  Keeping my legs strong has helped me to keep moving but strong muscles cannot totally overcome a nervous system that won’t send messages. My arms are strong because I exercise but holding them up to clean a window can cause incredible discomfort.  Something so simple can wipe me out. I actually enjoy cleaning so this is not something I like to hand off to other people. 

Struggles with my bladder and bowels have been going on since I was a child. It has only gotten worse over the years.The immune therapy and some natural aids  have enabled me to have normal bowel movements. Without the medicine my system is sluggish and what should be normal for a woman who eats as clean as I do, is nothing like normal.

Sleep is a battlefield too. Falling asleep is difficult when spiders are crawling up my legs-at least that is what it feels like. I use Cedarwood oil to ease that and it works. I wake up from sleep feeling like someone is pushing different parts of my body down into the bed-it’s really just heaviness from the warmth of my body. Pain pierces parts of my body and wakes me up. While on the Immune Therapy sleep comes, pain disappears and I awake much more rested.

M.S. hug is not a friendly name. It is really a horrible feeling. It may be around the knee or leg for me but more often it feels like someone has tightly wrapped a bandage around my ribs  and pulls it tighter and tighter and then loosens it just long enough to make me think it is done. At odd times it constricts making me feel like I cannot breathe. It can stir panic and fear and I have to choose to breathe deep and think calming thoughts of truth.

Oh, there is much more but really, I don’t want you to know everything. I just want you to know enough to pray that my immune system no longer attacks itself (which I believe we have accomplished  with the Immune Therapy-I will share an update on that later). I want you to pray the inflammation settles in my body so I do not have to live on this medicine. Most patients only have to be on Infeperium for a short period.  And please do not assume you know how I am doing just because you see me walking, smiling and appearing normal.  Normal has been stolen away from me by the dysfunction of my own body. I don’t really want you to know that I am insecure and sometimes worried that people think I am lying or misleading. I am learning to not be so worried about what other people think. I cannot always be reliable because I just do not know what tomorrow holds for me but those who truly know me and truly love me know I am sincere. I cannot worry what others think.  I am choosing to live for God and God alone.

If you want to know more about M.S. feel free to read this article that the Mayo Clinic  created.  

Please pray for all M.S. patients. Being diagnosed with a supposedly incurable chronic illness is very scary. Pray they make healthy changes so they can thrive and possibly correct their immune dysfunction early. Pray for their minds to think on things that are good, true and lovely. Pray for healing in the body, mind and spirit.  Pray they know the eternal hope of Jesus Christ. We have eternity to live without pain and trials. This time on earth is minimal in light of eternity. M.S. is not a death sentence but it can definitely change the person who battles it for good, better or worse.

“Therefore, we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary , but what is unseen is eternal.” 2 Corinthians 4:16-18

Praying for you today,

Charise

The “Doing” that I am going to Keep Doing

 

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The doctor was so very pleased with my progress and the “life choices” I have made to thrive that she told me “keep doing what you are doing”. If you didn’t see the update from my latest MRI you can read it here. In this blog I am going to share with you all of my not-so-secret tips.

The first decision I made to thrust me into thriving was to guard my mind.  I have been in the trenches and teetered on depression many times but choosing to stand on truth and to live each moment with a heart of thanksgiving enabled me to pull up and out victoriously. Journaling thanksgivings in the mundane moments and times of struggling and choosing to see the gifts in every day has helped me pull through. Thanksgiving has been a life source.

Second, I chose to keep moving. When  I could barely walk unassisted, I said, “Look I can walk!”. Then I said, “Look I can take these steps without assistance” and then I kept moving. I used a stair stepper exercise machine. I would hold onto the wall or couch to balance and I could barely do it for three minutes before I wanted to break into a tear stained mess but I did it and then I worked up to four minutes, then five and then up to nine. A friend blessed me with a stationary bike and I found that to be much easier on my legs. I pushed my body to pedal, pedal, pedal and then I would cool myself down with ice packs. I found a way so that I could keep moving. Each day I strengthened my legs more and more. Pilates was also a wonderful tool I utilized to get a low strain exercise. It has been four years and I am still riding the stationary bike, stretching and strengthening my core with Pilates and light free weights. With each relapse I recovered better because my legs and arms were stronger. Ice packs are vital to cooling my body so that I can keep functioning after a workout.

Third,  I changed my diet. I know this is a hard one for a lot of people. I get it. We had slowly purged sugar long before my diagnosis but this was a step towards being healthier. My diet at the time of diagnosis was far from antioxidant and phytonutrient rich. A month after diagnosis and much research we chose a diet that was 99% Vegan for the first year. We chose to go on the diet as a family because we knew it would help all of us and it sure did. Even the children got a good body cleanse. We flushed out toxins and filled ourselves with healthy, vitamin rich foods. Since that first year, we have incorporated fish into our diet once a week and we take fish oil pills daily. The DHA and EPA is so very important for the brain. The fats we eat are from nuts, seeds, avocados, coconut oil, and coconut milk. We still enjoy a good quality dairy free dark chocolate. We don’t feel like we are missing out. There are lots of great tasting foods in our diet.

Fourth, I began taking Low Dose Naltrexone last year. This medicine is a natural route  in the medicine world. I was really struggling last year. I was having issues with bowel movements (due to numbness), dependent on walker with a seat so I could sit if  I had to do anything in the kitchen for more than five minutes  and I was battling other issues causing hindrances to my day to day enjoyment of life. It took the right pharmacy making the medicine, a few months of regularly taking it and I began to regain my abilities and experience a calm in pain. I am beyond thankful for this medicine. I recommend McGuff Pharmacy in Santa Ana, CA. They deliver within a few days. This medicine is a God-send.  Check out the research! It was also recently approved for M.S. You can click here and here to read more info. on LDN.

Last and just as important as the rest of these are the supplements I take. I took Juice Plus consistently for three years and I value this product immensely. These capsules allowed me to flush my body and fill it with phytonutrients and antioxidants effectively without the expense, time and work of juicing. I have been off of it for about six months as I take some time to try some other products but I have a feeling we will go back to JP eventually.

Here is the bulk of  supplements I am currently taking: B12, Turmeric Curcumin, Fish Oil, Vitamin D (6K), Plexus Probio (it has probiotics and digestive enzymes in one), Plexus Bio Cleanse (Vitamin C, Magnesium, Sodium Bicarbonate and Bioflavenoid complex- this helps me have regular bowel movements. Pro Biotics seem to stop me up. Sorry if this is TMI.)

And the two supplements that I recently realized are helping me to have WAY less pain are Plexus Ease (New Zealand green lipped mussel powder, bromelain, serrapeptase, turmeric extract) and Plexus Nerve (Thiamin, riboflavin, niacin, vitamin B6, folic acid, Vitamin B12, Biotin, magnesium, zinc, copper and a mix of amino acids, horse chestnut  extract 20%, butcher’s  broom root and quercitin).  I did not realize they were working as well as they were until I got off of them for a few short weeks. I  suddenly remembered what pain I usually experience during these hot summer months. Oh my. My nerves began going nuts again. I went back to not being able to turn clothes right side out and turn socks the right way. Owie! My feet hurt just walking on the carpet and my nerves frazzled. I just got my newest shipment and now my nerves are on the mend.  I don’t ever want to go off of these products again! When I shared with Dr. Neurologist she was amazed at how much these natural products are helping me. She knows where my damage is and where I should be having issues. It isn’t that my issues are gone. It is that the pain, lack of control and so many repercussions  that come from my damage are not as severe due to the products I am using.

I also use Essential Oils to ease discomforts and promote healing. I may have to do a seperate post on oils that I love!   ;^)

I am beyond thankful for God’s guiding hand and His grace that upholds me daily.

“He also brought me up out of a horrible pit, out of the miry clay, and set my feet upon a rock, and established my steps. He has put a new song in my mouth-praise to our God!”Psalm 40:2-3

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MRI Results–Bad and Good

A rush of emotions comes flooding over me with every  neurology appointment. This week it was the dreaded MRI follow up and news. It didn’t start  out well when the doctor shared that I had six plaque spots in 2013 and the most recent MRI taken in June shows that I have TWENTY. I experienced a sudden desire to melt into tears.

She quickly explained that this recent MRI was done with better technology and was able to “cut” into more depths of my brain than the last MRI. We really don’t know how many of these twenty were there in 2013. The radiologist was able to confirm that I have not had any recent relapses/no new scars. And this was very pleasant news.

This darling and gift of a Neurologist proceeded to break down where the damage is and where and how it is effecting me. It all made sense to me as I know full well all the areas of weakness, discomfort, pain, etc. She then told me, ” Keep doing what you are doing. What you are doing is working”. WHAT???? Yes, read that again. “Keep doing what you are doing. What you are doing is working.”

 She is absolutely in awe that I don’t experience more pain, less bladder control and more issues. My body is creating its own detours around all my damaged nerves. Honesty. I wanted to cry for joy! This is the first neurologist to encourage my natural efforts to battle this disease and she was smiling at me with awe.

She proceeded to look at my chart and upon remembering that I began M.S. symptoms when I was 20 or 21 she told me that she thinks I have experienced the worst of this disease. It won’t get worse. She gave me the first official diagnosis I have ever received of the type of MS she thinks I have. It is Primary Progressive. Only 15% of M.S. patients have Primary Progressive. Leave it to me to be one of the rare ones. :^)

This was the very first time I left a neurologist office without loads of fear, angst, frustration and anger. They usually look at me like I am an odd ball for  doing things so “against the grain”. I knew God was leading me from the very beginning. He lead me to get off Copaxone. Now that we know I have Primary Progressive MS, we know that the  Copaxone would NOT have helped me. I am so thankful for God’s guiding hand. He gives wisdom to those who ask. He gave me wisdom and in spite of the many naysayers I experienced in the journey, I am so thankful for the Holy Spirit guidance.

I am praying for you in your journey. Trust Him in the process even when you feel alone and weary. He is your strong tower.

” From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe.  I long to dwell in your tent forever and take refuge in the shelter of your wings.” Psalm 61:2-4

In my next blog entry I will share what I have been doing that doctor says, “Keep on doing!“. ;^)

My Multiple Sclerosis Story

Twelve years of strange symptoms coming and going, undiagnosed numbness, irritating swelling that seemed to be allergy related and yet gone only with extreme doses of steroids all came to a head two years ago this coming week. Two years ago on Mother’s day, the morning started out amazingly blessed with home made breakfast by my hubby and hand crafted gifts from my children’s tender hearts. As we returned home from church, we took a family picture and entered the house. I felt it in my foot first, that swelling feeling. I knew THAT feeling. The one I attributed to allergies. I dismissed it to enjoy my special day but as the day lingered, the feeling increased and the numbing began moving up my legs and hindered my ability to walk. I had felt this before. It would all be okay. I figured we’d make a run to Urgent Care later if need be but nothing was going to interfere with my Mother’s Day. We went out for dinner that evening and I had to hold onto the stroller for proper balance. The symptoms were increasing. By the middle of the night potty break I could not walk to the bathroom without stumbling. I had to hold the wall the whole way. I knew there was something seriously wrong. Maybe, it was a pressed nerve. A visit to the chiropractor was in order. The next morning my honey drove me forty five minutes to our trusted chiropractor. He looked at me and warned me, “If this doesn’t go away with this adjustment, you need to go to ER”. I already knew it in my head and heart. We waited through the night. The next morning I HAD to go to ER. My husband had to go back to work. Daddy came and took me to ER. They took me in right away for fear it was guillain-barré syndrome. That illness could cause immediate paralysis. The doctor on call immediately called the local Neurologist. He knew I had M.S. and immediately called for an MRI. After a few hours of waiting, the doctor was even more confident of my diagnosis and ordered a spinal tap to do a final confirmation. The diagnosis-Aggressive Multiple Sclerosis.

It wasn’t a smack in the face. It was kind of a surreal reality. I didn’t cry or become over taken by it. As flashes of a picture of a bed ridden daughter of someone I knew came into my mind, I knew it was going to be okay. I knew the Father was going to carry me. I-just-knew-it.

I was admitted into the hospital for four days while my homeschooled kids were cared for by sweet loved ones. I floated through those days of IV’d Steroids flowing through my veins and injections of interferons stuck into my stomach fat. I walked those hallways regaining my strength each day and laughed like I’d known the diagnosis for years. The nurses couldn’t believe that I’d just found out and wasn’t down in the dumps. Only God. It was only the Father carrying me and filling me with supernatural joy.

Numbness still hindered feeling from hips down but I was gaining the ability to move. After being released from the hospital and delving into life in a two story house with four children ages seven, five, three and one it all hit me like a ton of bricks. I could barely roll out of my bed. It was at that moment when reality struck me, “What if I never fully gain the ability to walk and do normal, day to day tasks again?” “What if?” I lay there heaving tears of pain and sorrow. What if?

I will continue my story in the next entry. Stay tuned or subscribe to my feed so you get it in your email.

Today, as I celebrate Mother’s Day with my beautiful babies and amazing husband, I have to choose not to let my diagnosis anniversary haunt me or hinder me but to celebrate in the life lived strong these past two years. The weakness I have experienced has increased the Father’s strength in me! I leave with you the verses that have become some of my life verses.
“And He said to me, ‘My Grace is sufficient for you, for My strength is made perfect in weakness.’ Therefore, most gladly I will rather boast in my infirmities that the power of Christ may rest upon me. Therefore, I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong.” 2 Corinthians 12:9-10

HE IS MY STRENGTH!