The Thoughts of SES Blog

The Wait Is Over…I Have a Diagnosis

So after 3 and a half months of waiting, the results came from the immunologist. I have mixed feelings since my particular case has no cure, no real treatment. But I also know what I’m dealing with and my doctors will be able to work with it easier. My primary diagnosis is Mannose-binding lectin protein deficiency, also known as MBL. Not a lot is known about the condition. I only ask that whoever reads this pray for a cure or at least a treatment to be found in my lifetime and that if not that I continue to learn to accept things as they are and face it bravely.


“You Never Let Go” post from Facebook Notes

Posted in Thoughts on Church, Thoughts on God, Thoughts on Health by ses31 on February 1, 2010

“I will fear no evil.” I wonder if this too applies to sickness, financial hardship, or any other trial or tribulation that may rear it’s ugly head?

“If my God is with me whom then shall I fear?” Isn’t God supposed to be the almighty protector? After all, if this God who loved me, all of us, so much that He sent His Son to die on a cross for my sins, past, present, and future, then would He not love me not enough to protect me from anything that might try to harm me, even if it is my own immune system?

Admittedly, how quickly and easily I can forget this and instead become paralyzed with fear of the unknown. I haven’t had my appointment yet. That’s not until Monday, February 8. At this point, I can only sit and wait and pray and hope for the best. Because I do not have a complete diagnosis and the stuff on the Internet does not help my natural tendency to worry any.

Worry leads to fear.

I am making a promise this week to anyone that knows me personally. I will not be researching anything further pertaining to what might be wrong or pertaining to what the immunologist might decide to do as far as a treatment plan. I will take the words of Mr. Redmond’s song to heart, and strive to remember that God IS with me and therefore, no matter what, I really don’t have anything to fear. And most of all, for my prayer warriors reading this post, I will post an updates on my blogs.

Bleak News and Brokenness

Posted in Thoughts on Church, Thoughts on Health by ses31 on January 27, 2010

I opened the mail today and when I opened my test results from the endocrinologist, there was a prescription for prescription strength Vitamin D with six refills.

This confirms my suspicion of malnutrition since the last time I was on prescription strength, it was only for one month.

I feel so broken right now.

As a Christian, I should know that God is with me through this, and that’s what I have been learning, but I ask where is God in this right now when I really NEED Him?

How I Feel Today

Posted in Thoughts on Health by ses31 on January 27, 2010

I woke up feeling like I should be back in the bed. I have been having an off-week this week, with restless nights and insomnia. I came home from church Sunday with a 100 degree fever and it has yet to come down below 99. I usually run a 97-98.

I got on the scale this morning only to find that I have lost 12 pounds total in one week. I am noticing from several other factors that I am starting to become malnourished in terms of my necessary vitamins and minerals.

My neurologist’s office called yesterday. They don’t want to wait until March to see me. They want to see me next week. Probably to discuss the advantages and the disadvantages of my continuing on Topamax therapy for prevention of migraines in light of the kidney stone in December.

The urologist did not have the results of the pathology from that yet as of yesterday. But I will want them forwarded to me so I can make sure my primary care doctor, my endocrinologist, the immunologist, and I guess the neurologist and my mitral valve specialist gets them.

My mitral valve specialist told me when she looked at the results of the bloodwork that got me into the appointment with the immunologist that she would me more alarmed at my IgE level than my flagged IgG subclasses 1 and 3. Although in all honesty, even the IgA and the IgM and the other IgG subclasses 2 and 4 were a little troubling to me.

But she may be right. I have virtually no IgE, yet I have a multitude of allergies that the doctors can’t find on tests despite my clinical history-“Doctors can be stupid sometimes.” You’re right Mr. Bob. When will they learn that if a substance causes the symptoms, and the elimination of the substance eliminates the symptoms, but the reintroduction of the substance brings back the symptoms, it’s a strong possibility that an allergy exists?

But finally after two years, I am hoping to have some answers soon…. In the meantime, today, I feel kind of sick with sneezing, a slight ear ache, a fever, itchy, watery eyes and some mild pains again.

Hello world! This is me.

Posted in Thoughts on Church by ses31 on January 27, 2010

Hello. I am not going to be saying very much about myself personally on this blog as anyone that wants to know more about can find me on Facebook and friend me there if they really want to know more about me.

As the title of my blog says, these are my thoughts. Thoughts that I don’t mind sharing. Thoughts about what I am learning as a young Christian. Thoughts about life. Thoughts about the challenges I am and will be facing dealing with my health right now.

Some people already know that I learned in December that some parts of my immune system came back deficient. But see, this is only a half-knowledge. I don’t see the immunologist until February 8, and I am very much in hope that he will be able to help find out what is wrong and determine the best treatment for me to be able to live a more “normal” life again.

I have been trying to be brave, but that brave facade is falling apart before my very eyes as each day progresses closer to the big date. I guess I need to work on letting people in. Letting them love me. Letting God love me. Stop holding back and going in my little bubble out of fear and just open myself up to love.

But admittedly, this is one of the hardest things for me.

It wasn’t until I was invited to OMPC that I truly felt loved by a church. I mean, I’m not saying there aren’t people there, like there are anywhere else who think they are better than everyone else, but OMPC is unique in that, it is the first church I’ve ever been to that the focus is more on God and God’s grace-emphasis on God’s grace.

When I first started visited at the invitation of someone who is now just a friend and his wife over the summer, the pastor was in Ireland. But the morning he was back, he introduced himself to me (a rarity, in and of itself). So, of course, when my friend went to introduce the famous Pastor Bob Flayhart to me, he seemed a little bit disappointed that somehow we’d already managed to meet.

The funny thing is that even though I am as shy as shy can be and I don’t really talk much (except when I feel I have something important to say and usually when I do start to speak, please do not interrupt me because I hardly ever speak to begin with), I am probably one of the biggest social butterflies there is! I love people. I love being around people. I love working with children. Using puppetry. Using my sign language, my music, my creative movement.  I love being friends with as many people as I can.

In public places, I have to warm up to strangers, but once I do, then there’s potential for some friendships to bond. And the best thing is that I am one of those loyal friends. I fight for my friendships when they are right for me and worth keeping.

Over this past weekend, I decided I was ready to move my relationship with God from God is this really good friend who really cares and yet scares me because He is so powerful, to finally an upward and forward move into a Father-child relationship.

A lot of things led to this point, but the main three things I can account for are seeing some good examples of fathers in my church, including my friend who invited me to OMPC; Pastor Bob’s gentle compassion that he has shown me consistently the whole time I have known him; and then there was a specific line in this past Sunday’s sermon that hit me on the head, which I will add later.

One thing I love about Pastor Bob-he’s not afraid of stepping on people’s toes or clunking them on the heads with his sermons! Some ministers would never dare to venture that, but he wants us to be more proactive in our walk, more responsible, and if that means offending someone at some point, then oh well.

But this all I have to say for now. I may have more to say later, but until then-Grace!