I know I'm not going to be a millionaire from Tsu, but I might be able to buy some of the kids' medications that are no longer covered! A girl can dream, right?
Friday, October 31, 2014
I know I'm not going to be a millionaire from Tsu, but I might be able to buy some of the kids' medications that are no longer covered! A girl can dream, right?
Friday, September 12, 2014
Thursday, September 4, 2014
Friday, August 22, 2014
The doctor emailed me the letter he sent to insurance. I wish he hadn't. Don't want to believe any of this is true. I hate reality. The one sentence is kind of choppy.... "result in death as seen in..." The doctor is crystal clear about what will happen if the meds are no longer covered.
August 15, 2014
Re: XXXX Curran (dob: XXX)
To Whom It May Concern:
I am writing on behalf of my patient XXXXX who I diagnosed with Mitochondrial Disease (ICD9: 277.87).
He experiences muscle weakness and fatigue which affect his ability to engage in daily activities. He has deficient cellular energy production which causes neurological deficits, muscle pain and fatigue. He has difficulty swallowing and frequently chokes and microaspirates.
Management of XXXX's disorder significantly depends on these [compounded medications] which have been shown in many studies to be helpful in improved muscle strength, increased energy levels, and slowing the progression of this disease (refs 1-3). He has been on the compounds that I've prescribed which resulted in a significant improvement in his swallowing, energy and strength as well as activities of daily living.
As his primary Mitochondrial Disease specialist, it is my opinion that without this [compound] XXXX's muscle and organ functioning would decline significantly resulting in the life-threatening progression of his disease (well known part of natural course mitochondial disease) and subsequent extended hospital stays.
If insurance coverage for the [compounded medications] is denied, XXXX may develop neurodegenerative symptoms which can result in death as seen in mitochondrial disease.
I would be glad to answer any questions and communicate further. I would also provide lab reports, clinic notes and scientific literature substantiating my assessment and recommendations.
1. Parikh S, Saneto R, Faulk MJ, Anselm I, Cohen BH, Haas R, Medicine Society TM. A modern approach to the treatment of mitochondrial disease. Curr Treat Options Neurol. 3009 Nov; 11(6):414-30.
2. Dimauro S, Rustin P. Biochim Biophys Acta. A critical approach to the therapy of mitochondrial respiratory chain and oxidative phosphorylation diseases, 2009 Dec; 1792(12): 1159-67.
3. Tarnopolsky MA. The mitochondrial cocktail: rationale for combined nutraceutical therapy in mitochondrial cytopathies. Adv Drug Deliv Rev. 2008 Oct-Nov;60(13-14): 1561-7.
at 11:10 AM
Monday, June 30, 2014
Barack loses another SCOTUS case. Religious Liberty wins!
at 11:44 AM
Check out this link for information on Mass in Yellowstone I was really excited to see that they had services in the park because al of the Catholic churches seem to be quite a distance from where we are camping.
We have most of our camping gear clean and ready to go. 18 days and counting!
Saturday, June 28, 2014
We laughed so hard we had tears in our eyes as we remembered the day I gave him this card. I didn't say a word...just let him read the card. I didn't remember that I had written "Only ten more to go!" on the back.
We didn't know then what God's plan was. We now have 3 here on earth and 20 souls in heaven. God knew we'd need special saints in heaven praying for us! He gave us a big family. Just not here on earth. We will have a glorious reunion in heaven one day.
I am so very blessed that we have our Catholic faith. I am thankful that we were always open to life-- from the moment we got married (Our oldest is a *honeymoon baby*). I cannot imagine life without my precious sons. I started having miscarriages at the age of 30, and that just makes me feel extraordinarily happy that we knew before we got married that we would be faithful to His Church and her teachings. This card really is a joyful reminder that we've ALWAYS tried to live our Catholic faith as a couple. I am blessed. Not always perfect, but we've always tried! God is god. God is faithful.
Friday, June 27, 2014
God had been calling me to veil at Novus Ordo Mass for quite a while. With the help of a friend who encouraged me to branch out from Latin Mass and Adoration, I began veiling at every Mass several weeks ago. Instant peace! It is such a beautiful tradition.
Once I realized what scripture said and what this tradition has meant in the Church for over 2000 years, how could I not veil in the presence of God in the Holy Eucharist? Veiling is a sign of humility before God. It is a public proclamation that Jesus is truly present in the Holy Eucharist! I only wish I'd of known of this tradition earlier.
At first, I was afraid to veil at Novus Ordo Mass because of what people might think. Let's face it, veiling isn't the norm. It was easy to veil at Adoration because there were so few people around. It was easy to veil at Latin Mass because everyone was doing it. We veil for God, not other people!
Of course, it still took a lot of prayer before I took the next step to veil at Novus Ordo Mass. I even asked a priest what he thought of veiling before I finally took the next step! I also reminded myself again that veil is a sign of humility before Jesus in the Blessed Sacrament, scripture calls us to cover our heads and it is also a public proclamation that you desire to submit to the will of God. But most of all, I reminded myself that it is public proclamation that Jesus is truly present Body, Blood, Soul, and Divinity. After knowing what it means, how could I not veil!?
This Catholic News Service video on veiling is beautiful. I thought I'd share it and then share a few pictures of my favorite veils. I own 3 and have a very long wish list. I'm praying that more women come to (re)discover the tradition of veiling!
|My friend and I on Ascension Thursday-Latin Mass|
|Same veil as above, love how is changes colors!|
|Love this light weight Chantilly lace veil-lilac and beige colored flowers on it. |
Veils on my wish list:
at 11:10 PM
Wednesday, June 25, 2014
We will be gone 22 days (if things go as planned). We will camp in Little Rock, Albuquerque and Flagstaff the first 3 nights we are on the road. We found a cute church to go to Mass at in Albuquerque. If we have time, I want to stop at the Stations of the Cross in Groom, TX. We will then spend 2 nights in the Grand Canyon before heading to visit friends who live outside of LA. Then it is up the middle to eat lunch with a friend in Fresno and on to Vacaville for a night to visit a childhood friend. I feel blessed that we are planning on going to vigil Mass at the church where I received my First Holy Communion! Then up to Redding for 5 nights with my parents before heading up to Idaho. We will camp at Twin Falls before spending 3 nights at Yellowstone. Then it is on to friends in Denver. We will camp one night in Topeka and visit friends in Overland Park before making the last 16 hrs of the drive home. 20 states, 6,200 plus miles, 10n nights camping, 10 nights with friends and two nights using hotel points.
A few weeks ago, when I was making reservations at Yellowstone for camping, I had to pull out our small tent to get the dimensions. They ask! I've always known them as the small tent and the big tent. Since it was out, I sealed the seams once again.... because there is nothing worse than camping and having the rain come inside your tent.
Today, I'm going through camping gear....because you know that it never gets put back properly after each trip. Need to figure out what we have and what we need. I'm pretty sure my Coleman stove needs a good cleaning, too. In 23 days, my 18 year old son and I will embark upon the most amazing adventure ever! We are praying for 3 weeks of health and 3 weeks with no doctor visits. God's got this!
I'm going to try to blog as we travel with my mobile app! I really think this is what we need. It's been a stressful few years with their health and surgeries, etc.
Saturday, June 21, 2014
Joseph has been swallowing pills since he was 2 1/2 - taking meds daily since he was a baby. Sean has been taking meds since he was a baby and started swallowing pills at 3 1/2 and that's why J started at 2 1/2- he wanted to be like his brother and not take meds in applesauce. This has been our life for 18 years. I get tired of it, so I can only imagine that they hate it. Add to it, all the surgeries, procedures, hospitalizations, infusions, doctor visits and infections. It's amazing that S is only taking one extra year to graduate. Because, in between all of that, we also homeschool.
Then there certainly is the aspect of, "God healed Sean a little, but not me." Sean did IGG for 8 years, trialed off and has done well, though his IGG is very low normal, he's only gotten pneumonia once since being off. J trialed off and had hopes that it would be God's plan that he wouldn't need it. It just wasn't God's will. He also wonders why they both have the same diseases and he's more *complicated*. It's human nature.
I know people mean well when they try to *fix* it. I will never, ever, give up on my children. Jesus never gives up on me, and I will never give up on my children. We've never done this before. Every stage of this life with chronic illness is new to us. We cannot change the will of God. We trust that His will is perfect and that there is a reason for all of this. We can only offer it up to Him and pray that they become adults who take care of their health issues if He chooses not to heal them. As always, my first prayer for my children is ALWAYS that they love God above all else. I pray for that before I pray for healing. If they love God first, the rest will fall into place. God's got this even when we don't.
I am thankful for every one of you who prays for us. So thankful. Especially on days that I can barely find the energy to pray.
at 11:47 AM
Friday, June 20, 2014
Let's just say I've got low self-esteem with a touch of OCD thrown in. Most people who know me think I'm probably quite full of myself. I don't know. Truth is, I walk around thinking about my failures. A lot. This week has been especially hard with finding out just how noncompliant my youngest has been with his medical treatments. Makes a mom feel like quite a failure.
At some point last year, a priest told me I should confess by kind and number. That was a revelation for this Catholic mom, so I have been working on that... meaning... ahem, I work on my wordiness. Have I ever mentioned I talk? A lot. Then, I obsess that any amount of talking bothers people. Okay, I obsess, in general, about bothering people. Pretty much get to feeling my mere existence disturbs folks. It's me, not them. I mean that. I'm always afraid that I'm a burden to people. I grew up with family members who frequently told me they hated me. So, while I get that is abnormal and other people aren't that way, it has always been a life long struggle!
What have I learned this last year? This is awesome..... are you ready for this? If the confessor needs more info, they ask. Another revelation. How freeing is that!? Just the facts ma'am.
So back to my confession stories. You know we've all been there, but no one ever goes around talking about what happens in the confessional. Seriously, who does that!? I do, sometimes... because it is an important part of our faith. Always humbling, sometimes very emotional, and many times, at least in my case, pretty darn funny. Not the confession part, my thoughts and reactions. The grace is amazing. It brings me to my knees in thanksgiving. Sometimes I cry because the grace is overwhelming. Sometimes I cry because I can't get over myself. Mostly the former.
Last month, I went to confession and the priest gave me a 5 day penance. My first thought was, "Dear Lord, how will I ever remember to do this between everything else?" My second thought was, "Dang, five days? Was I that bad?" Ahh... but the grace was amazing. The priest knew EXACTLY what I needed to do to get back on track with my life. I had really been struggling with certain areas of my life and my penance was perfect. Guided by the Holy Spirit.
I don't think any confession will ever beat the confession where the priest yelled at me so loudly that I KNOW the entire church heard. The only time I have ever slinked out of confession. I can still hear his voice. He meant well. I guess? I also love those times when people are complaining in the confession line and I wrack up more sins for my uncharitable thoughts.
This morning after Mass, I went to confession. I sat down and the lady in front of me told me that Father didn't have time to hear confessions today. I asked, "Oh, so he's not hearing them?" She remarked, "No, he just has an appointment and is in a hurry." I'd examined my conscience several times and I was ready. Then comes the overwhelming feeling that I am somehow imposing on his time because he has to get going. So I rattle through my sins.... listen, then said my act of contrition. A little faster than normal, but I think I annunciated the words and didn't stumble. Then comes the (in a very nice voice-emphasis on nice)- "I'm going to add something to your penance." My first thought was, "Oh my word, what have I done now!?" Father said very nicely something like, "After you leave here, I want you to go into the church and say your act of contrition again SLOWLY..."
My first thought was, "I really suck because I can't even say I'm sorry correctly." I knelt and said the act of contrition at least five times. Really. The first time I thought it might have been too fast again. The second and third times I was preoccupied with the fact that I am a complete failure at confession and saying I'm sorry. The fourth time, I just started crying. I think I finally got it on the fifth (sixth) try. Then I cried all the way home. I called a friend. I told you I had OCD because only would a crazy Catholic with OCD obsess over this.
What do I think the lesson was? Well, it wasn't "don't go to confession when you are emotionally raw and haven't slept in a few weeks." Once again, I learned that I really just need to get over myself. Ouch. I was also reminded that we human beings are always in a hurry, worried about being late, have appointments but God isn't and doesn't. When we are in confession, we should never rush. It's God's time and we receive sanctifying grace in confession. I really should have slowed down and let that sanctifying grace soak in.
Tuesday, June 17, 2014
My middle son and I watched a homeschooling video this morning and I laughed and cried. It portrays the perfect homeschooling adventure. Our family's homeschooling video would be completely different. We are somewhere in the middle. Maybe. Just a little.
It is a struggle, trying to accept God's will for your life when you compare yourself to others. When our children were born, we had hopes and dreams..... we saw the homeschooling adventure in the video before us. It's wonderful for those families who live that dream. Sometimes, God has other plans. Yet, His will is perfect and while the adventure we've had isn't exactly what we dreamt it would be, I wouldn't change it for the world. God's version IS perfect. We've learned how to truly offer up our joys, works and sufferings to him. Most days, anyway.
Somewhere between the medications, infusions and hospital visits, we manage to homeschool. Our oldest graduated from Seton last year, never having been to regular school, and did well his first year at Belmont Abbey. Two more to go. God willing S will graduate next year and J the following year. Part of our homeschooling is transitioning them to adulthood with the ability to take care of all their own medical needs. This is proving to be the hardest part of our journey so far.
While our homeschool adventure is only a tad bit like the video below, this is an awesome video. Something I truly always dreamt ours would be. I am ever thankful that God makes up for where we are lacking..... and feel blessed that while not the best example of homeschooling, God called us to this way of life. He knew what He was doing when He put it on our hearts to homeschool our kids.
Seton Home Study School - Catholic Homeschooling from Two Sense Films on Vimeo.
Tuesday, March 18, 2014
In 2012, it was my special honor serve as "Rally Captain" in Winston-Salem for the "Stand Up for Religious Freedom" campaign that hosted hundreds of rallies all over the country in opposition to President Obama's HHS Mandate. I'm writing today to ask for your special help supporting the cause of religious freedom when the U.S. Supreme Court hears oral arguments in two critical cases next week.
On March 25, the U.S. Supreme Court will hear arguments in Sebelius v. Hobby Lobby and Conestoga Wood Specialties v. Sebelius -- the first two cases on the HHS Mandate to reach the high court. The HHS Mandate is one of the most controversial parts of Obamacare. It forces employers to provide FREE abortion inducing drugs in their health plans -- without any regard to religious or moral objections.
The Green family, owners of Hobby Lobby, and the Hahn family, owners of Conestoga, are standing for ALL of us who cherish religious freedom by challenging the HHS Mandate in court. So where do you come in? There are THREE ways you can support the Green and Hahn families when their cases go before the court:
1. Attend a prayer vigil and rally at the Supreme Court on March 25. If you can't be there yourself, let all your friends and family in the area know about it. Here are the details:
EVENT: Vigil and Rally at the Supreme Court WHEN: Tuesday, March 25, 9:30-11:30 a.m. WHERE: U.S. Supreme Court, 1 First St NE, Washington D.C.
The Rally will take place on First Street, right in front of the court steps. You can get a map and more details here: http://standuprally.com/2014/march25
2. Spread the word about these important cases and the religious freedom issues involved through every channel: email, Facebook, Twitter and your personal blog or other website. Forward this email to all your contacts, and find Facebook graphics to share, a link to the Facebook event for the rally, hashtags, sample tweets right here:
3. Keep the Green and Hahn families, all their attorneys and the Supreme Court justices hearing their cases in your prayers over the coming days before the oral arguments. Thank you for doing your part to support the cause of religious freedom as these two critical cases go before the Supreme Court on March 25.
at 9:38 AM
Monday, February 10, 2014
Friday, January 10, 2014
I found this info at Natural News: http://www.naturalnews.com/028866_butterbur_migraines.html#
(NaturalNews) New research into the causes of migraine headaches reveals that a little-known herb called butterbur offers tremendous promise for migraine headache relief. Clinical trials also indicate that butterbur, discovered originally in Germany, can prevent the recurrence of devastating migraine headache pain.
Butterbur's Two-pronged Action for Migraine Headache Relief
Butterbur acts on migraine headaches in two ways. It removes painful migraine headache symptoms by lowering the inflammatory effect of chemicals like leukotrienes and prostaglandin E2. The second active benefit found in butterbur is its ability to function as a natural beta blocker whose action results in the normal flow of blood to the brain. This helps control blood pressure and spasmodic capillary action, which can also contribute to the onset of migraine headaches.
Wondering how well butterbur works? In a study of 245 people conducted by the Department of Neurology at Albert Einstein College of Medicine, 68% of participants saw the incidence of migraine headache symptoms reduced by at least 50%. This is a huge breakthrough for people suffering from migraine headaches and the results are better than those of many dangerous over-the-counter and prescription medicines.
The May 2000 issue of the journal, "Headache", states that butterbur is gaining recognition in the US as an effective alternative migraine headache treatment. Additionally, the report confirms its ability to reduce active migraine headache symptoms and prevent future migraine headache attacks. The best part is people taking butterbur reported no significant side effects and only infrequent, mild stomach upset.
Buy Specially Processed Butterbur at Health Food Stores and Online Herbal Pharmacies
When buying butterbur as a migraine cure, be sure to choose a brand labeled PA-Free. This means the product was processed to remove potentially harmful, toxic chemicals found in the butterbur plant. The special butterbur extract is prepared by having all liver-toxic alkaloids removed. Purchase butterbur at most health food stores and online herbal pharmacies.
Clinical Guidelines for the Use of Butterbur for Migraine Headache Relief
Double-check with a healthcare practitioner before using butterbur as a migraine cure. Clinical guidelines for using butterbur for migraine prevention include documenting the frequency of migraine attacks, determining the recurrence of migraine headache symptoms and whether they interfere substantially with daily routines, and charting the patient's use of conventional medications and how well they are tolerated.
The recommended adult dosage is 50-100 mg twice daily to reduce migraine headache symptoms and to prevent future migraine headaches. Take butterbur for an adequate amount of time to observe its efficacy. A three month trial is suggested for this assessment.
If conventional medicines or other herbs are taken for migraine headache treatment, consult a doctor for a timetable to wean the individual off those other preparations to avoid interactions between medicines. Avoid using butterbur if the person is allergic to ragweed, daisies, chrysanthemums or marigolds.
The use of butterbur as a migraine cure and to prevent future attacks of migraine headaches is on the cutting edge of alternative treatment for this debilitating condition. Speak to a holistic doctor to find out how butterbur may be integrated into an individualized treatment plan for migraine headache relief.
He's had migraines since he was around 6 and been treated for them. We are also adding Magnesium Oxide and Butterbur along with abortive drugs to stop the migraines he does get. Figured I'd share this info in case there are other people like me who didn't know about this migraine treatment.
This link had a lot of info: http://migraine.com/migraine-treatment/natural-remedies/riboflavin-vitamin-b2/
Riboflavin (vitamin B2) for the treatment of migraine headaches: an introductionRiboflavin is a B vitamin that is essential for growth. Riboflavin, also known as Vitamin B2 or B2, can also be produced synthetically. It is often used as food coloring and to fortify foods including baby foods, cereals, and cheese. Riboflavin is destroyed by light, so food containing this vitamin shouldn’t be stored in clear containers.
Food containing Riboflavin
- Turnip greens
- Whole grains
- Lean meat
Riboflavin and migrainesRiboflavin supplements have been used for more than three decades as natural remedy for newborns with jaundice and ariboflavinosis (riboflavin vitamin deficiency). More recently, Riboflavin, in high doses, has been identified as a vitamin that can help migraine sufferers.
Riboflavin (Vitamin B2) and migraine headachesRiboflavin is necessary for growth and for the production of red blood cells. Riboflavin also plays an important role in how our bodies gets energy from carbohydrates, fats, and proteins. Migraine sufferers may not have enough Vitamin B2. This makes Riboflavin a potential treatment option. Because migraines can be caused by many events in the body, Riboflavin is often used in combination with other migraine treatments.
Studies on Riboflavin and MigrainesOne 1998 study of 80 patients who suffer from migraine with aura or migraine without aura found that 400 mg of Riboflavin worked better at preventing migraines than an inactive placebo pill. After three months, patients in the Riboflavin group experienced fewer migraines and deceased severity of migraines than those in the placebo group. Here’s a breakdown of how many patients benefitted:
- Riboflavin cut the number of headache days at least in half : Riboflavin 50% , Placebo 15%
- Headache days per month : Before Riboflavin 4 days , After three months of Riboflavin 2 days
- Pain killers used per month : Before Riboflavin 7 units , After three months of Riboflavin 4.5 units
Formulations of Riboflavin availableRiboflavin is available as:
- Tablets, Enteric Coated