The Red Tape Rumba
In order to access government programs for individuals with disabilities and/or serious health conditions I have been doing a lot of the Red Tape Rumba. The paperwork alone must be designed to weed out those who are not committed enough to accessing help because it is a beast all its own. I am waiting for them to ask for a DNA sample at some point soon. I had my hearing with the social security judge a few weeks ago and at the hearing she was visibly torn about what to do in my case. The problem is that with an undiagnosed neurological condition, I don't fit neatly into any of the categories social security offers. Dystonia and Dysautonomia apparently don't have categories either. So she grabbed on to the fact that one doctor said it could have psychiatric roots and decided she wanted to categorize me as having somatization disorder. Only one problem. I am not under the treatment of a psychiatrist, because I don't need one. So she decides to send me to see a psychiatrist who turns out to be very nice and the good news is that I am perfectly sane - or as sane as anyone who is fighting with the government can be. The psychiatrist was puzzled as to why the judge sent me to her as it was "obvious" that I had "multiple serious medical conditions". So now I am waiting for the judge to get the report and then make a decision. I am trying to have faith that she will recognize that if I were able to work I would do so, as I miss teaching so very much, and determine a way to categorize my disability.
Because my COBRA ran out, I have been living without health insurance since February. I applied for Medicaid under a program for the medically disabled. They decided I needed to be seen by their doctor to determine if I am disabled or not. That doctor's office was a very sketchy place - I was so glad that I wear wheelchair gloves because the floor alone looked like a crime scene with weird stains and substances. The doctor turned out to be a nice guy, and I think he was a Christian because he told me to have a blessed day when I was finished. He did a basic exam and basic neuro exam and said that this was "straight forward" and "obvious" and that he will "never understand the government". So I am prayerfully hoping that this means I will qualify for Medicaid as their doctor agrees I am disabled. I also pray that I do not have to do a huge spend down each month before Medicaid kicks in.
Medically, I am noticing that the weakness is progressing slowly. The distance I can push myself in my wheelchair has been greatly reduced over what I could do a year ago, and I have more issues with tight muscles in my lower back and hands now that I never had before. Of course, my medications have been all changed around due to cost so that may have something to do with it. One medication cost $25 per pill!! That is insane!!
I am going to try and keep this updated more and with more of my regular writing and less strictly medical stuff but I can not make any promises. I don't even know if anyone reads this anymore :) But it is helpful for me to write things out so I will continue for now.
Blessings to you for reading and caring!
Long Time Gone
UPDATE: The social security judge was unable to make a determination today regarding my case. She is really torn over what to do and at one point had her head in her hands on the table. The problem seems to be that my medical records lack "objective data" to support my claims. My MRIs and Lab work and DNA testing are not abnormal (or abnormal enough) to warrant a case. However, several doctors who all got the idea from my first hospital admission have used the term somatization, or the physical manifestation of emotional issues. I know this is not the case and do not want this label. She feels it is a well fitting label because there need be no objective data. I may have to go for a psych consult to prove that this is not in my head. I don;t know how emotions could cause contractures, bone shifting, documented weakness, an abnormal EMG, and dangerously low blood pressure. I am frustrated but trusting that somehow God has a plan for all of this. Please keep praying.
Faith, Hope, and Love
Faith, hope and love. These are the keys of life. So far I have stepped out in Faith to share Hope and Love with children living in unimaginable poverty through Compassion International and I have been richly rewarded. So far I have held to my faith that God will provide for me, and every need has been met. He somehow made it so that I have an extra month of my most expensive prescription, and this is a prescription that I can take half dose and still be safe so I have a 4 month supply. Loaves and fish. Almost all of my prescriptions have excess pills with about a month extra. The prescriptions that I do need are very reasonably priced, and I was able to cut the costs of two of them by calling other pharmacies because Target price matches. My doctor allowed me to call and request an antibiotic for a sinus infection without having to pay for an office visit and also agreed to switch a medicine due to side effects trusting me. Love has been poured out to me abundantly, and I have had amazing support. By taking my medication as prescribed and dealing with the sleepiness, I am obtaining results that make the dystonia tolerable. Faith, Hope, and Love.
I will write another post soon, after I send out letters to my Compassion kidlets, about other aspects of life but I wanted to get this update on here.
Blind Faith
My COBRA insurance coverage ends on February 29 - as in Wednesday. I have been praying, my family has been praying, my friends have been praying, and quite possibly soon my sponsor children will be praying. I was notified today that my Hearing for Social Security is scheduled for May 21. While that beats 9-18 months, it sure is not the outcome I was praying for. I had so hoped and believed the judge would just look over the mountain of papers and make a (positive) decision. What is a hearing going to do? It is teleconferenced so the judge will not even see me in person so "the big show" will be shoulders and chest in a wheelchair. I can do a 360 for full effect if that makes him happy. I guess by May I have to shave my legs so I can wear a skirt because I don't think Federal judges are down with blue jeans. My other hope of Medicaid is still closed due to lack of funding. This is Michigan. We probably will not have funding again for a few decades. Stupid auto industry, who needs a car anyway? Actually, that is the problem. So now I am stepping out in complete blind faith that God will provide for my every single need as He promises in the Bible. It may not be how I expected (oh it most certainly is not how I expected) and it will be in His perfect time (which seems to not be synchronized to my watch) but He will provide for me. I wish I could say how, but I have no clue. I wish I could say when, but my calendar is full of empty boxes. All I know is that it will happen and I choose to have faith in the one who created me and has promised to never fail me. I wonder if wheeling over to Canada to buy my prescriptions is a part of His plan? ;)
I Got Mail!!
Yesterday I received my first letter from one of my girls!! It was written on January 13 so it took about a month to arrive here. Letters can take as long as 2-3 months to reach some children, and then for return mail to arrive depending on where the child is located. My letter was from precious Monique in Burkina Faso. Before I share her letter I want to share with you a video clip that I found that explains the power of the work that Compassion International does in Burkina Faso.
Now on to my letter from Monique! The translator was not the most skilled, as I was able to catch mistranslations and I do not speak nor read French. But the main points of the letter are very sweet, if a bit addled by translation.
Dear Bethany,
Monique is so glad to be your sponsor child. All her family thank you for your love. She lives with her parents, her father Mathieu, a farmer, and her mother Marthe who sells firewood in market. She has older sister Elizabeth. She is in grade 7. She has 2 younger brothers, Azaria (6 years old) and Samuel (2 years old). Monique likes playing hopscotch with friends, The weather is very cold here. She would like to know about the weather over there. Do you have children? She wants you to pray for health and her family. She loves you and hopes to hearing from you soon, Thanks, Happy New Year 2012.
I have written to Monique three times so far (last night was the third as I responded to her letter), so I think at least my first letter crossed paths with this letter in the mail and hopefully she has it by now (given how long it took her letter to get here). She dictated her letter to an administrator at the Compassion Program center she attends, and then that was translated from French to English. There are some cute little drawings at the bottom of the letter.
I just wanted to share my wonderful, delightful little one with you all!!
Lies Satan Tells
Lie #1: If only you had enough faith, God would have answered your prayers and healed you by now.
Healing comes in many forms. Healing can be healing of the body. Healing can be healing of the spirit. Healing can be putting the pieces back together to make you stronger, to make you able to overcome, to make you a better tool for the Lord in spite of the damages. Healing can wait until heaven.
Lie #2: No one will ever love you because you are broken and damaged goods.
We are all broken. We are all damaged goods. We are all scarred by the world and we all are perfectly imperfect. Without God we are nothing. He makes the broken whole. We are all equally worthy and unworthy of love, but love is never about worth. Love is about pouring out what has been given to us despire our unworthiness by the Jesus Christ and giving it out unconditionally. Love is not confined or defined by earthly labels like disabilities or illnesses or other damages. Love surpasses all of those.
Lie #3 Your life has no meaning (anymore).
Every life has a meaning and a purpose for which it was ordained. God creates us in His own image, in His own likeness, and does not do so without a meaning to each and every creation. I exist for a reason, God desperately wants to use me for a reason for which I was designed. There is a plan and a purpose. If He took the time to create you, He took the time to lay out the entirity of your being, your life from conception to eternity.
Lie #4 You are not good enough.
It is not about being good enough. Or rich enough. Or smart enough. Or religious enough. It is about being obedient and willing to answer yes when the Lord calls, even when the call seems difficult or way outside our comfort zone. It is about living your words where you are as you are and ever seeking to live more in God's Word. It is all about being broken and shattered and put back together again. It is about beauty rising from the ashes to glorify God. God's light can shine through us best where we have been put back together and there are chips and cracks. Our humanity drives our reliance on Him, and with Jesus all things are possible.
Lie #5 There is so much need in the world you will never make a difference.
The world is indeed filled with suffering and need, with poverty and destitution, with orphans and those without families. It is our calling as Christians to serve these people. To serve the orphaned, the widowed, the sick, the destitute, the hungry, the suffering. You pray and seek God's guidance as to His mission for you and then you obey. You will not save the world. But I guarantee you can be Jesus for those He brings you in contact with - you can be His hands and His feet, His mouth and His heart. As long as you are being obedient, God will use you to make a difference in the lives of multitudes, many in ways you never imagine. One at a time we can not change the world, but as a body, as The Church we do have the power to truly change the world for the glory of God and we each play our role.
These are some of the lies Satan has been hitting me with recently. They come in my doubts and fears, in my insecurities, in my heartache. I call them out in the light of day for exactly what they are - lies. I wish I had the Bible verses to go against each lie but in honesty I have been neglecting my devotional time and my time in the Word. I am ashamed but I know that God forgives me and will welcome me back in with open arms and speak to me once again through His Word. I do not know why I felt called to write this. It was never planned, and I wrote it long after I planned to be asleep. If it was intended to encourage someone else, to reveal a lie to another person then I pray it does so. For I am so blessed.
The Wired Blogger
What happened to my head?
a) The aliens returned and placed a probe inside
b) The barber cur it a little too close on top
c) I am a star in a local reenactment of a great battle in which the cripple always gets shot first
d) I am having a 72 hour AEEG to try and catch my brain hiccups to figure out if they are seizures
When asked by an annoying woman in the elevator who just stared at me and asked "Oh My God What Happened to You?" I was tempted to go with A. Instead until noon on Thursday I am wired for sound. I wonder if I can tweak these things to get a decent radio station since we live in the last thing to pass as a city before God Forsaken nowheresville. We hit the event button twice, so hopefully we caught something already. Although it would be my luck to wear this darn thing for 3 long days and have a big episode as we are taking the electrodes off. I loved the instuctions that came with the hook up - don't shower while having 28 electrodes attached to you and a battery box recording them. Um, duh! If it itches (if? if? it started itching before she was done putting the leads on!) don't scratch. Right, cause in my sleep I can control that. That is why for sleeping purposes I get to add a snug knit winter hat over top of the ensemble. Do not stick anything sharp under the bandage to scratch your head. No chewing gum because it makes a nifty pattern on the EEG.
The one direction that has me a little perplexed is the fact that I am not supposed to use my cell phone except on speaker phone or text. Apparently the phones can interphere with the wires and electricity. Now I thought cell phones and their electromagnatism were deemed safe, yet I am being told not to put them near my head because they will scramble my brain's electric signals. I may rethink how often I use my cell phone!
The ditz who hooked me up yesterday had a philosophy that tighter was better for wrapping my head. I have deep red marks under my chin from where she put the chin straps. However, like a winter hat that is a size or two too small the bandage slowly crept upward trying to pop off my head. The suggestion from their office of sticking a nylon over it did not seem like a good idea as I have no bank robberies scheduled this week, so my poor mom had the job of carefully removing what was still on my head and then rewrapping the whole thing. Her chin straps are not gagging me so right there is a huge improvement. All the leads are covered and attached, and I have my trusty hat.
Thursday morning my mom has a DR appointment at the same office building where I need to go get fasting labwork done, so I may venture out in my new look to get labs done and then go out for breakfast. Breakfast is the easiest meal to find a vegetarian option in most restaurants. For fun I could decorate my head with stickers, because at this point dignity is a mute point. Thursday afternoon is dedicated to removing the leads (I have a solution to remove the adhesive that is holding them in place) and then washing my hair 3-4 times to get out all of the sticky conductive goop. Thank God I cut off the 11 inches when I did to donate!! I will be using the cheap shampoo to wash that many times and not my fancy organic expensive shampoo.
Until then I am wired for sound and my head is nice and warm!!
