miracles come in tiny, perfect doses

I take a lot of pills but I am really, really okay with that. For years and years, my family and I have prayed for that one pill. That one, unobtainable, perfect, magic, fix-all pill.  
Yeah, those don't exists. 

But they do make one pill that is pretty dang close to that miracle pill that my family and I have searched for for nearly 15 years. 

Plaquenil.
One pill. Twice a day.
That did it.
I got my life back and what a life it is.

Plaquenil has been around for a very long time; decades. It was first used to treat malaria, then RA and now it is used forLupus. Being diagnosed with Lupus and being treated for it has absolutely changed my life. It is hard to believe that I wasn't diagnosed for so long. I still have Dysautonomia and Chronic Fatigue but they seem to be secondary disorders to the Lupus. Thus, with the Lupus being well controlled, these disorders are controlled as well. 

I just wanted you all to see what my miracle looks like. I'm also reminded everyday, twice day that I wasn't forgotten or forsaken. That is a pretty awesome reminder! 

More to come on my summer! It was busy and long! I have someone very special that I want to introduce to you all!

a Prayer Request for Dysautonomia Patients.

This is a very sad post.

The foundation for MOST ALL Dysautonomia patients include a drug called ProAmatine. When you are diagnosed with Dysautonomia, ProAmatine is the first prescription written for you. It works on the tiny blood vessels through out the body, by stimulting them to contrisct and raise blood pressure.

The FDA is pulling ProAmatine -a life line for so many patients- off the market as of September 2010. This is devestating news for thousands of Dysauotnomia patients. The FDA's reason for the pull is that the drug company, Shire Laboratories has failed to conduct a study proving its long-term benefits.

I am a rare paitent that cannot tolerate Proamatine. (Something that is a blessing at the moment.) I am worried for so many, many friends and strangers, alike, who are frantic about how they will manage without this medication. This medicine helps a so many people!

My heart is breaking for them all.

Will you join me in prayer? Please pray that there will be someway that these Dysautonomia patients will not have to go without this medication!

"When two or three come together in My Name, there I am with them."

Matthew 18:20

an answer to my waiting.

A mighty answered prayer needs to be shared!!!

This prayer request has been answered! It is something that my family and I have prayed and hoped for, for 10 years now. Last Thursday, it was answered!

The new doctor in Atlanta has written orders for me to receive IV fluids several times a month. IV fluids have proven to be very helpful for me over the years but most doctors (and I not sure why!) do not want to prescribe this method of treatment. Because I do not respond well to medications, the fluids will help build blood volume, thus increasing blood pressure and help me feel a little better.

The IV fluids work fast and their effects are not drastic but I am less symptomatic when I receive fluids and I am generally more physically comfortable.  The effects of the fluids do not last very long, though. I will most likely get a 1 to 2 day reprieve from my most uncomfortable symptoms, like dizziness, faintness, headaches and nausea. Although, the fluids are not a cure-all, lets face it, a little bit of a good thing is better than nothing at all!

Needless to say, I am so happy and I can't wait to begin this new treatment.

Thank you for your diligent prayers my sweet friends. Praise God for His mercy and goodness.

When I was waiting quietly for the Lord, His heart was turned to me, and He gave ear to my cry.

 Psalm 40:1

My Daily Rescue Kit...of sorts.

Well, here it is, everthing that is currently getting me through my day (minus my heating pad and rice wrap). Of course, my darling mascot and ring leader, Holly is first on the list. She and I are really bonding and she is learning, once that heating pad comes out, it is quiet time! Have I said that I loved her? Yeah, I didn't think so!

Next, would have to be Teddy. Teddy and I have been through a lot together. He is slowly falling apart but I can't bear the thought of giving him up. Stained, threadbare and all-I still love Teddy; even if I am nearly 27 years old! ha!

I love my journal. It isn't so much a journal as it is my own quick, personalized reference guide for favorite verses and quotes. Anytime I come across a bible verse or quote that I like, I write it in that journal. I use it has a reference a lot. I am so glad that I started doing that. When I need a "pick-me-up", I have hundreds at my fingertips.

Of course, there is my big bag of medicines. Pills...I have pills for everything. I really wouldn't mind so much if I felt like they were helping. Oh well, I faith that God will heal and they will start to help me soon.

Netflix! Ah! Greatest thing...EVER! Seriously, I can't wait for Mondays and Thursdays...those are my Netflix delivery days. (I tend to rent movies that I have seen before because I want to be sure that I enjoy them!)

Last but certainly not least is my iPod. I think I may be addicted to that little gadget. I listen to it all the time. It has seen better days. When I have headaches (which have been numerous and horriffic lately) the only thing that I can handle is some soft, comforting music. I think it is almost time for a new one. The battery won't even last 10 hours, these days! Oh, but how I love my iPod!

I must say, having a bad migraine isn't so bad when my sweet puppy curls up under my chin like that! Now, I have reason to look forward to them...umm, not really but I think you get what I am saying. If I am going to have a bad headache, this is the way to do it: with a sweet puppy sleeping next to you.

Week in Review

Hello and again thank you to you all. I cannot tell you what it means to know that I have support and prayers from so many loving friends.

On Monday, November 30th, I arrived at Reston for my appointment with Dr. Abdallah. I had already had 2 ‘near fainting’ episodes earlier in the day but had managed to stay conscious both times. I was very sick and very tired when we arrived. We waited for about an hour and then I was called back to do Orthostatic blood pressures. This is where my blood pressure is taken laying, sitting and standing. These reading are very important for Dysautonomia patients because depending on how the blood pressure and heart rate react with each change of position it can be a sign of underlying Dysautonomia problems that need to be addressed. When I stood, I was able to do so for a couple of minutes and that is all I remember. The next thing I know, I am on the floor with my head wedged between the wall and chair. I didn’t hurt myself too bad. Just a sore head and arm. The nurse didn’t finish the standing pressure readings and had me lay down. After a few minutes of resting, I was taken to another room, to have an echo-cardiogram done. (It is sort of like an ultra-sound of the heart.) This too, is done laying, sitting and standing. Now, when you have this done, you must completely disrobe from the waist up and put on a small, paper shirt that is unbuttoned in the front. I am used to be poked and prodded and after so many years of being sick, honestly my modesty has gone out the window. As the male technician was completing the scan, I had to stand. Basically, all I remember is him asking me to stand. The next thing I remember is this burly man holding me in his arms putting me on the exam table and that horrid paper gown is just not doing the job at this point! ha! He was so kind though, and immediately got my jacket and covered me. I was thinking, "Great, twice in one visit? What are they going to think?" There is still an honest fear that people-including my wonderful doctor-won’t believe me. It is a horrible feeling.
I was then taken to the exam room. My Mom comforted me and we both agreed that we hated that I had fainted at all but if I was going to faint -and twice at that- it was great that I did it in the office so that Dr. Abdallah could see and hear about it firsthand. Last Monday was the first time that I have ever fainted in any doctor’s office.
Dr. Abdallah came in shortly and sat down. I am always a little "fuzzy" after fainting. I couldn’t answer his questions very well. But fortunately Mom could. He only spent about 2 minutes talking and then he looked and me and said, "This is out of control. Out of control. We are going to have to admit you for a few days." Oh, gosh, I lost it. I hadn’t planned on this at all! I just wanted to go home. After he left, Mom came over and reassured me that this was for the best. She reminded me of the last time that Dr. Abdallah admitted me to the hospital. That was several years ago and I literally came home a completely different person. He made me feel so much better. I was sad but my hopes were high. I had/have great confidence in Dr. Abdallah.
So, within about 30 minutes I was in my room at Reston Hospital. I was really happy because I was on the pediatric floor and the nurses are always so very nice on the floor. Reston’s staff is one of the greatest hospital staffs that I have ever encountered!
I was on IV Saline the entire week. Fluids help me tremendously. Many Dysautonomia patients receive fluids at home as part of their treatment plan but that is something that my doctors have never been comfortable with. (I wish they did!) Tuesday was a very long and very rough day. Dr. Abdallah didn’t allow me to take any medicines so that I could start with fresh meds on Wednesday. I was really sick and terribly uncomfortable. I was so happy when bedtime finally came around. I took some medicine to help me sleep and that was the first night that I got a full night’s rest in weeks! I woke up Wednesday feeling like a different person just because I got some decent sleep!
There were several things that Dr. Abdallah found in blood work.
1. My Vitamin D and Calcium were low.
2. My blood count was low. (Borderline Anemia.)
3. And the few blood cells that I did have were very poor quality. They were low on iron and oxygen. So that could explain why I wasn’t feeling well.
Dr. Abdallah began treating me with Procrit injections. You may recognize the name. Procrit is advertised as a medication for post-chemotherapy patients to raise their blood count and allow them to have more energy. The Procrit works by stimulating the bone marrow’s production of red blood cells.
I was on Procrit once before in the Summer of 2001. It didn’t go so well, then. But, things have changed since that time and I am willing to give this a try again. I know what side effects to look for this go-around. I will be giving myself a shot 3 times a week. So, we will see.
Right before we left for Virginia, I wore a heart monitor for 24 hours. I fainted 3 times while I was wearing it. Again, we all hated that I fainted but glad that it could be caught on the monitor. Dr. Abdallah was honest when he explained that he couldn’t tell us what happened during that 24 hour period and he doesn’t know why I am fainting so much because my blood pressure are not dropping significantly.
By the end of week, my Mom and I both knew that I would not be coming home feeling a lot better. As much as I hate to say that, it is the reality. We both cried and tired to encourage one another. We knew it was true when I got in the car on the way home and within 10  minutes, I was dizzy and sick to my stomach. We both started crying.
And then last night, I fainted. Yes, I fainted again. I am really in shock. I am not sad, yet. I know it will come. I know the disappoint will set in a few days. However, I do KNOW that I will feel better again! I ALWAYS do! I just have to wait!
I don’t want to sound like "Debbie Downer". On the contrary, God showed me unconditional love from the four corners of the Earth last week. I am so thankful for my family. They sacrifice so much for me. I can’t explain the miracle that exists in our family.
I do have prayer request. I feel that it will work out but it is still upsetting, nevertheless. The day before we left the hospital, a hospital representative came to my room and dropped a bombshell. Our insurance, denied coverage of my entire hospital visit. The state of health coverage is a huge debate in the US right now. I know everyone has their opinions. Right now, I just want the insurance to pay because it is the right and just thing to do. I honestly feel that God will take care of us, in this situation. Again, maybe I am just choosing not to think about it too much.
Thank you all for reading this post. It is entirely too long and I hope it made some sense! I have a few more things that I would like to share but I think I will save them for another day!
Merry Christmas everyone! and love.

Today's Thank You

"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

1 Thessalonians 5:16-18

Today I am THANKFUL for Zofran. I have been very sick to my stomach today and Zofran is my Miracle drug.


I am thankful for my iPod. Thank heavens for beautiful, soothing music.
I am thankful for my doctor and his generosity, kindness and encouragement.



And I thank God everyday for these wonderful people; my AMAZING family!

We can all overcome with Him.

Hello Blogger Friends.

May I just take this moment to thank you. Thank you for browsing, stopping and reading my blog. Thank you for commenting, thinking about me and praying for me. Thank for messages that I have been sent through Facebook, Polyvore, and email. You each bless me in a way that I cannot explain. Thank you.

Those are my evening medicines...my downers. Just kidding...sort of! My body doesn't really know when it is supposed to wake up and start each day and when it is supposed to wind down and stop at night. So, I have to take medicines to try and replace those natural mechanics. But there is nothing like the real thing and my body knows it. I wish it would let me cheat every once in a while.

I have not blogged in the past couple of days because I have felt pretty bad. Fall and winter months are a bad time for me and it seems this season is not going to a walk in the park! :/

I am sad to today but if you read my previous post you know why. I am also sad because so may wonderful people I know have private pain and suffering. My suffering maybe have an usual name, Dsyautonomia but my suffering is not different or unique. We all feel loss, regret, fear and hopelessness. We all suffer. That is what makes us one big family and more importantly allows us to empathize and help those we love.

My favorite book in the entire world is The Hiding Place. It was written by Corrie ten Boom. A Christian woman whose entire family perished during the Holocaust after sheltering Jewish families. This amazing woman, after all she endured, went all over the world to share the love of Jesus. My favorite quote in the whole entire world came from her:

"There is no pit so deep that Jesus is not deeper still."