Some people don't like details. Each day we ask and are asked by several people the simple words "How are you doing?" Most give a curt "fine" or the ever cheery "Good! How are you?" Then we go about our business.
Disclaimer: I am not like that. If you ask me how I am doing I will tell and I will give you details because when I ask you how you are, I really want to know. I don't want the trivial. I want to know people. I like to hear their hearts. I like to know the stories behind those eyes or that grin. People are so intricate and our lives are so vast, that if we can look beyond the house and fence, "everything is great" mentality maybe we could actually start being real.
Tonight finds me in a jolly state. This is the first time in a long time that I have actual time to savor the sweetness of being alone. I can throw on this nightshirt catch up on my blog and settle in for a night of relaxation. No major pressing needs holding me hostage.
The last month has been hectic to say the least. My parents were here for a month, there was and is a situation between the parents of the little girl I live with and raise, and my health has played it's fun game of peekaboo. I was having major chest pains, and anxiety attacks. It felt beyond my control. Each time I felt the grief of what was going on with Mylie I could not handle it. I would freak out physically (thanks fibro). Loving this child so much and not being able to do anything "but" pray. And boy did prayer happen. It was during those moments that God began to heal my heart. I would sometimes be so full of grief and the burden that all I could do was curl up and groan and beg Papa God to come. To move in me, to just be with me. It was so heavy... that hurting, hurting pain. The helplessness to watch someone I adore be in the middle of something so not her 4 year old fault, a dear friend losing something she'd wanted for so very long, and my own constantly being sick... it was so thick.
And Jesus came. He wept with me. He showed me how much more He is broken and grieving over divorce, over injustice, over miscarriages, over hurts, especially the hurts of children. His children. He reminded me that God made Mylie. That as much as I love her, that He loves her even more. Wow! How is that possible? Even now as I type I can feel His presence like a river of oil pouring, pouring over my head and down my entire body. He told me to release my burden. That I carry too much on myself. That I don't let it go. I feel so much. Sometimes I can "feel" people's hearts around me and it has always been something I have loved. I never understood that there are boundaries. That I can pray and love and be there without letting it overtake me. In these moments of intense grief, the Holy Spirit would give me just a peek at a time of His astounding love. It's such a full, overwhelming, vast love. I couldn't handle it all at once. It was not easy to HEAR that word from God. Over and over in various scriptures, through a book called The Happy Intercessor, and through people praying and speaking into my life, as well as advice from trusted friends, and being in the presence of God did I begin to understand that something much bigger was being repaired inside of me. I could feel Him binding my wounds and peace was coming and coming and coming in bursts. It did not happen overnight. I was resistant and maybe still am. I have to be honest here. I had a dream one evening. In the dream I was at a retreat with some friends. At the end of the retreat everyone was outside in the cars ready to go. I was inside of the hotel scrambling to pack my stuff. It was strewn everywhere. Not just my belongings, but also some of Mylie's. There were piles and piles of everyone else's stuff. They'd brought it all to the retreat and left it there when it was time to leave. I was frantically trying to carry out photo albums and clothes, etc. I felt so anxious. At that point my friend Hayley Powell told me to leave it there. It was now garbage.
Wow. I woke up at that point. I began to ask God to show me what to do with that dream. It's meaning is fairly obvious. So I asked to be set free and moment by moment I am learning to agree with the freedom that is already mine. I have to change that habit of trying to fix, taking that privilege of prayer and allowing it to become a time where my feelings get in the way and suddenly I am owning whatever that thing is that didn't belong to me in the first place. Basically I've got to get over myself and give it ALL to God.
I feel an openness in my spirit, a vulnerability, a bud of fresh hope for the future. Fibromyalgia has robbed me of so much, and it's far too easy to get gung-ho and steamroll ahead like I am not sick. I end up disappointing myself that way. It's a new way of living and that takes some time. The morning of March 9th as we drove to the airport I could feel the crushing rib pain and the urge to vomit. This happens occasionally. When we let my parents out at the Southwest curb I clung to my mother and sobbed in a way I haven't since I was a little girl. I felt like something inside of me was breaking. And then I clung to my dad. I wasn't ready for them to leave. Having them here helped me so much. It was a great comfort to my soul after all of these months.
After that morning is when I just let it all out. I cried fiercely and when it was over, I felt the peace over me in a way I hadn't in months. The goodness, the faithfulness, the sheer beauty of just knowing Jesus makes everything in this life bearable. There is nothing that He cannot heal or fix or restore. It's amazing to know that every single day and still find myself in worry or fear. Those things are not of God, and I have been partnering with them for far too long. I took authority back. Over my body, my life, the place I live. It was a grand old time seeing Jesus do His thing.He never ceases to surprise me with His devotion.
Now on to the medical aspect of things. I finally went to the treatment center. I was skeptical. I walked in, some cheesy tunes overhead, and a not so welcoming atmosphere. I was wrong. The doctor was amazing! He spoke with me A LOT about how those of us in fibromyalgia are in some kind of hibernation mode. What we eat and do has a lot to do with if we stay in that hibernation mode. He examined me and said I have all 18 of the 18 trigger points for fibromyalgia and he also heard an irregularity in my heartbeat called Mitral Valve Prolapse- a heart problem in which the valve that separates the upper and lower chambers of the left side of the heart does not close properly (which could explain all those chest pains and those high blood pressure scores). We went over how important it is for me to have a wheat free, gluten free, ABSOLUTELY sugar free, dairy free diet. That diet mixed with the supplements and medication should help as we first attack the candida and bacteria that is causing all of the IBS and stomach issues. I gave 16 vials of blood to check, as well as sent off hair samples. If more donations come in I will do the stool test that is more detailed then a regular one and would tell exactly what parasite is in me, if that is indeed so. Since I got sick in the Philippines that is a possibility. There is still so much to cover. This was only the first appointment. I got a shot of oxytocin which helps with pain for a couple of days. He tested my carbon monoxide as well. Right now we are only on stage one of the plan to get this fibro managed. He is focusing on my intestines first.
I started getting migraines and earaches after the appointment. I think the migraines may have been because I quit sugar cold turkey right then and there, and the earaches still come and go. I have an appointment with the clinic for my blood pressure at the end of the month, so I will ask about my earache then. I know it's not good to wait on that, but with CMSP there are not a lot of options for treatment.
I cannot recall if I wrote that I saw the ortho doctor and I do NOT need surgery. Thank the Lord! Instead I have osteoarthritis and tendonitis in my left foot and ankle and have 6 weeks of physical therapy 3x a week in Vacaville. I started this week. It was okay the first time. The guy basically told me (as many other doctors) to suck it up and push past the pain to work out. I just stared at him. Yeah, Buddy. That'd be swell. I used to walk 4 or 5 miles a day, don't you think I miss working out? He quickly backtracked as I just looked at him. He told me he knows fibromyalgia is very real and he has other patients with it. I decided to just get over it, because only other fibro sufferers know the reality of our disease. So he was a pretty nice guy despite the judgement, and he gave me some exercises to do at home as well as pool exercises. He told me to sit in the hot tub for 30 minutes 2x a day. Afterward he had me lay down and I was given Electrical Stimulation (Electrical stimulation uses an electrical current to cause a single muscle or a group of muscles to contract. By placing electrodes on the skin in various locations the physical therapist can recruit the appropriate muscle fibers. Contracting the muscle via electrical stimulation helps strengthen the affected muscle. The physical therapist can change the current setting to allow for a forceful or gentle muscle contraction. Along with increasing muscle strength, the contraction of the muscle also promotes blood supply to the area that assists in healing) for 20 minutes. It's supposed to distract the pain from my brain for a little while. It felt weird, and since my nerves are all cuckoo from the fibro I only kept it on a very low speed. At times it felt like a massage, but at others it didn't feel so pretty.
Today I went in for my second appointment. It was different this time. No personal room this time. Instead I did the exercise bike for 5 minutes, then the ankle exercises, and then more electrical stimulation. I kind of like the place. It reminds me of Private Practice with various therapists walking around sharing patients and working together. Next time I know to wear workout clothes, sneakers, and probably a ponytail. I felt like a silly gal wearing my jeans, flats, and earrings to ride an exercise bike. ;) I didn't know what we'd be doing.
I've been feeling slightly better and it's only been 2 weeks. I have more energy and less pain, but I made the mistake of thinking I was Miss Thang and the fibro caught up the other night and reminded me not to go too fast. This is a lifetime (until I'm healed!) disease and I have to learn how to manage it, not beat it or fight it. Even with the medication. He gave me specific instructions so that the stuff we are trying to kill inside does not die off too fast resulting in me feeling worse. It's a process. I am still praying and believing for more donations so I can continue treatment. The stool test is $150.00, each visit is $145.00, and the supplements are about 81.00 every time I run out. My next appointment is April 6th. I'm not worried. God knows my needs and oh how He supplies them! I am a blessed, blessed woman.
I also had an epiphany one night about my family and closest friends. You are all so wonderful. I am amazed to be a part of a group of such loving people. How on earth did I get so lucky? When my heart is happy, or when it is bruised and battered, there is this team of angels all around me. Wow, Wow. Wow.
Here is a list of my current medications:
1.Omeprazole for acid reflux (lowers magnesium which is not good)
2.Acidophilus (a probiotc)
3.Saccharomyces (healthy form of candida and will help settle my intestines)
4.Charcoal caps (for aches and pains before bed or if I wake up. Will soak up the poison. 10-20 pills a day are okay.)
5.Nitroglycerine (for mitral valve prolapse)
6.Folapro
7.Vit D 1000 (eventually will have to get to 10,000 per day. This is to turn on 200 genes turned off in hibernation mode. Cannot use too much too quickly or will burn off the bad guys too quick and I will feel it. Will help me lose lbs. For energy. Turns on LL37 which kills yeast and bacteria.)
8.Vit C 1000 (take every few hours and also bedtime)
9.Magnesium Malate (to make up for the Omeprazole and help with muscle spasms )
10.A daily multivitamin (these make me nauseous so I have not been so good about this
11.Melaton(for sleep)
Right now I am at 25 pills a day, expected to go up.
Other tips:
- drink ginger tea with Stevia
- never use Nutrasweet (it's poison)
- drink Whey
- Absolutely NO sugar
- cut back/eliminate dairy, soy, wheat, gluten
- eat primarily greens (smoothie juices of fruits and veggies soak up a lot of the poisons and gets them out)
- vitamin D deficiency results in anxiety and pain.
- magnesium defiency makes muscles weaker, which may be why I have the mitral valve prolapse
It has only been a week and one day and I have lost about 10lbs, and that is with sneaking in a sprinkle of cheese or some Chipotle. I have not had any sugar but for one tiny sip of April's soda one night. I am feeling like I have a smidge more energy and I am getting tired on my own at night to fall asleep. That hasn't happened in over a year. I've had to rely on medicine to sleep. This part is amazing.
I am quite excited to see where this journey is going next. It's a new chapter and it seems like it's going to be a bright one. I have a new appreciation for my life, have been simply enthralled by trees and flowers and creation lately, and am so in love with my Jesus. I am so delighted and encouraged by my fibro sisters. Through the Fibromyalgia Funhouse on facebook and www.chroniclesoffibro.blogspot.com I have made some spectacular friends. I am blessed by dear old friends and equally so by the new ones.
So here's to a new season, my friends. I am learning to take the sadness and troubles of this disease and allow Papa God to transform it into garments of joy and gladness.
