The Sparrow : The Songbird!!!

So, I woke up early this morning, okay early for me anyways. I went in and had my appointment with my Neurology Dr. She is great! She had lots of questions for me, of course. We spoke about how being off of two different medications is affecting me. I'm really glad to be off of them and feel much better without plaquenil and zoloft. :) She was very impressed with how God relieved me of worry and anxiety. (more on that later) She told me that my reflexes were less hyped then last time. Which is good, because when I was in the hospital, and at my prior Dr. visits my reflexes have been really heightened. She had me walk as though I was on a tight rope, forwards then backwards to test my balance. She said "that it's better as well."  I asked her about doing labs and she had already planned to. Also I asked her about scheduling a MRI and she said "yep were gonna do that as well." I guess we were on the same wavelength today. So, my MRI is set up for Oct. 4th. at 9:40. Seriously who gets up that early?? HA HA! You got to know that I sleep a lot because everything that's going on with me. I am usually very tired, fatigue hits me like a _______ (fill in the blank)! Ooh speaking of sleep, I got a cool eye mask at Target that's really super soft. I'm excited about it! Sleep promotes healing, so I guess I'm doing the right thing!! Am I tired today??? The answer to that one would be a BIG FAT YES!!! Is my back sore today, YES. Actually pretty bad today, don't know what's up with that. Oh also my neurologist told me that it's not very likely that I became immune to tramadol. She did say that I should up my dose of gabapentin, which I cut back on in CO so that I didn't run out. Gabapentin helps blocks the pain signals from entering my brain. So, I might be hurting and not even know it. Does that sound weird?? I think it does to me. So they did labs on me as I said. They are running tests for lupus, blood type, RA, and two other things that I can't remember or was never told. They are making sure that my liver and kidneys are in good condition and working properly. : )

I couldn't find my medical records otherwise I would have written more about the yesteryear's of my life.

Live each day to the fullest! ~ Mallory

All You Need Is; Faith Like A Little (mustard) Seed!!!!

Officially two weeks in. Emotionally today was super hard. Let the water works flow. My younger brother went back to K.C. today. It was sad to see him go, but I'm very glad that he is where he's at. It's just plain hard to leave people I love after all I've been through. I had lots of stuff piling up on my to do list, deadlines on paperwork that needed to be in, and decisions that are needing to be made. So that was all weighing on me. Yesterday I was going to hang out with a very good friend of mine, but it didn't work out. I was pretty bummed. I called her to reschedule and even though she is a very bright and happy person, I could hear the disappointment in her voice. I felt terrible. Hopefully though we will be able to connect next week to catch up. Been way too long since I've seen you girl!

On with my life's story as interesting as it is. So, I know that I've mentioned moving has been a big part of my life, so much so that I don't remember which birthday I had where. Anyways, I'm gonna shorten this all up. I know I said I was going to put my story on here, but I'm going to get to the important parts and fast forward a bit. When I was thirteen, I went to detassel corn (for any of you Midwesterners you know what I'm talking about) in NE with some cousins of mine.  I was fine till a week in. I started getting really sick, and  got corn rash ect. My aunts encouraged me to stay and continue, but I just couldn't anymore. I called my parents early one morning and asked them to come and get me. They drove 12 hrs through the day, and picked me up. Then drove another 12 hrs back home through the night, and a storm. Just in time for my Dad to be home for work. When I got home I was bed ridden. My joints ached everywhere from my ankles, knees, hips, wrists ect... I couldn't even walk the pain was so extreme. I was swollen in all of those joints. Of course at this point we started seeking medical attention. Let the poking begin. Labs, labs and more labs were drawn. No one seemed to be able to figure it out. After about a month or so the pain started to subside. Shortly after that though for the first time I started to get very bad migraines. Let the testing begin. Dr's recommended that I see an optometrist. He said "that everything looked good, you have nothing to be concerned about." I continued to have migraines, so we saw the Dr. again. This time they suggested that I get my first ever MRI. At age thirteen an MRI is kind of a scary thing, not knowing what they might find.......even more so. They said "that everything looked healthy and normal." Again nothing to be concerned about there. Eventually my migraines ceased.

Then, In the spring of 2007 my right pointer finger began hurting. I went to the Doctor who thought maybe I just sprained it. She had me tape my two fingers together to see if that would help. Nothing seemed to help it. I went back to the Doctor after a month or so and she said "that I needed to see a specialist. I tried to get a job but I just couldn't keep it because I couldn't use my right finger. Ha that sounds kind of weird I know, but I couldn't write, type or have full function of that hand. So, with that said I went and saw a specialist a.k.a. a rheumatologist. Again with the poking!!!! Let's just say that I have discovered which arm I like them to use, and which vein. I guess I'm just trying to help the phlebotomist out.

I will tell you more about what the rheumy said later. I have to look up my medical records for exact details.

Peace and Love! ~ Mallory

Day 13

Day Thirteen, were almost two weeks in on this blog. It has been interesting trying to figure out what to write and what it actually means to be doing this. So, I started to write the very beginning of my story (the extremely condensed version) Now, I have to figure out where to go next. For now I will just say that it is interesting to be posting my life story for all the world to see. Ha ha I know that it was my decision and that I have already begun the story. HhMm Ugh!!!! I don't know what to say at this point. Does anyone have any ideas?? I'm kind of wondering if this has any meaning. Anyways, today I was tired of course, but not nearly as much as usual. Which is nice! My back was hurting terribly bad yesterday, and it was hard to keep up with my family as we walked through the mall. Had to take extra aleve and Tylenol as well as ice my back when we got home. It wasn't as bad today, but still in pain. I'm enjoying spending time with my bro! We are gonna get Chinese and a movie tonight! YAY!

All I've got for now friends, Mallory

It's HIS-Story, But It's All Part Of The Tapestry!

A Story is a common term for a description of a sequence of events, or a statement regarding the facts pertinent to a situation in question. It contains many pages and some are yet to be turned. Let me tell you about some that I have already lived.

I was born in a small town that many of you have never been to, or will ever hear of.  The only person in my family other than myself that was born in the same hospital as me was my father. I have a older bro by four years and a younger bro by four years. I remember when I was 3 years old, I got pneumonia. I was put in the hospital, the same one that I was born in. I remember being in bed with a humidifier blowing in my little area. Because I know that there was a plastic curtain encompassing the bed. I was a 3yr old in a plastic bubble. I know that people came to visit me and brought me books to read while I was there. My mom came up on my bed and laid there with me to comfort me. I remember having to get a antibiotic shot. I started kindergarten in a small town of less than 1,000. I was five turning six when I started school. I remember getting chicken pox and my grandpa passing away all in that same year. When I was in first grade (7yrs old) we moved. So the story goes that we moved, and we moved, and we moved. I have moved more times than the years of my life. I have lived in four different states, in peoples houses, rv's (in driveways and state parks), rentals, and hotels...ect. I recently told my grandma that I was raised in the back seat of numerous different vehicles. I was being sarcastic of course. I've been to 25+ states hoping to one day hit all 50, wouldn't that be neat! That's all I got for right now more to come later. This is of course the condensed version. I think one day it will be a book, just not here and not now.

Peace, Mallory

Fear Not Little Sparrow!

OUCH! Today has been a hard day. As I mentioned we had a full house. My little baby nephew actually ended up in my twin bed last night. It was sweet, but it was hard for me to sleep. So today I was a zombie, very tired. Also for some reason I am really sore. So much so that it is difficult for me to do much of anything. Sometimes just trying to find relief can be frustrating. I'm kind of starting to wonder if I'm becoming immune to my pain medicine,Tramadol which I take two 50 mg tablets 3x a day for my back pain. On September 30th I have a follow up appointment with my Neurologist. I'm hoping to get something stronger for the pain. I would also like to get some labs done and schedule another MRI. I'm kind of wondering how I should begin telling my story. I know that I would like to continue sharing about my day to day experience of how both Acute Transverse Myelitis and Lupus are affecting my body. I'm believing for negative test results y'all! God has shown me glimpses of what he has in store for my future. Knowing some of them has got me holding onto the hope that complete healing is in store!!! I know that He is Jehovah Rapha my Healer! My younger bro told me today that God cares about us being free from our sin as much as he does our sickness. He is a caring, forgiving, big God that watches over the sparrow. He is Jehovah Jireh our Provider!

Are not two sparrows sold for a penny? Yet not one of them will fall to the ground apart from the will of your Father. And even the very hairs of your head are all numbered. So don't be afraid; you are worth more than many sparrows. Mathew 10: 29-31

Home Sweet Home!!!

So this morning my brother came in my room at G&G's and woke me up at 8:30. He told me that he didn't really sleep at all last night, because he is still getting used to being on our schedule. We left my grandparents today. We had quite the Prayer and Worship session on the way home. It was great!! The car ride was rough on my back, like usual. Fatigue also got me today especially because my bro got me up early. What a bugger! It's good to be back home after 2 weeks away. We got home and fell asleep. We are now out and about doing my bro's laundry and getting groceries. We will have my niece and nephew over tonight. We will be crowded in our rv which we have called home since March 15th, 2010. It has been cozy but not nearly enough space. :) It's not the first time either so I know we can handle it till we find the right place for us. More to come on that later. Interesting since I quit plaquenil my joints haven't even hurt. While I was taking it they actually ached badly everyday. Now to spend more quality time with my little bro, and neice and nephew!!!

Mallory

Be Still, And Know That He Is God!

Wow, yeah like most other days the fatigue I was experiencing was very aggravating. I tried to rest, but my body wouldn't let me. I also think it was because, I was looking forward to seeing my bro that I haven't seen in a month. He met us at G&G's and will make the rest of the trip with us home tomorrow. The roof is not finished yet, but should be sometime tomorrow. They made a lot of progress with six guys on that roof at one time or another. It's been a hectic place, that's no lie. Somehow after getting all my clothes to fit in my suitcase it exploded when I got to G&G's. I guess I just figured that since I'm not riding in a tight compact car, that I have more freedom. I think it's important to note that my joints have not been bothering me much at all. YIPPEE!! My back has been hurting, but not to the extent of some of the other more painful moments I've had. My 15 month old nephew has been clinging on to me these couple days and it has been nice, but also very tiring. It will be good to be able to catch up with my brother, while he is home for a week. His schedule is different from ours, so hopefully he can get that switched around. That way we could actually see him while he is visiting. Anyways, I'm ready to get myself home. I've been gone since Sept. 12th, so nearly 2 weeks now. Oh I also want to note that it is my older bro and his wife's first anniversary on Sunday. Congrats guys! <3

Peace, Mallory

Precious Cargo!

It was an interesting one today. I felt very tired, and my back was super sore. It was a very stressful day for me today. I guess I was just overwhelmed. I felt like I had a lot of responsibilities put on me that I couldn't handle. My family is trying to help my grandparents get their house shingled before friday night because my brother is coming home from IHOP for a week visit!! Anyways with that being said it rained today (Thursday), meaning that nothing got done. Yuck, I hate the pressure, frustration and so much worry that people are radiating. It just doesn't help how I already feel. I'm really tired, so I will just leave it at that and say "goodnight!"

Mallory

Night Owl! Whoo Me?

Wow, did I ever sleep last night. It was like I was sleep deprived. Slept from midnight, till noon! Beauty Eh! So, I know I told you that I was going to back track, and I will. I'm just not sure when, or where for sure to start. It will probably be quite the process of elimination. There is so much to say and so much that probably doesn't have a place being in this blog. So, with that said I also find myself on the road quite a bit and will not be able to write everyday. I have however been finding this very enjoyable and therapeutic. Today I woke up and didn't feel very good in my stomach. I'm still trying to conquer that right now. I'm at my Grandma's till the end of the week. I will be helping her make buns and rolls today! Hopefully, I don't wear myself out. Anyways, I better get to it, lots to do.

So, today gma got her rolls and buns made. I made hot chicken dish and brownies. I was so glad when my family arrived! I was missing them! Those little ones bring so much joy to me! LOVE LOVE LOVE! Well bed is calling and telling me that I can't sleep till noon again tomorrow! :D

Mallory

God Is The Cure!

Today I made it back to my own time zone!!! My visit in Colorado was nice. I enjoyed being able to spend time with family that I don't get to see very often. On my way home today I decided that I am going to back track. I am a pretty private person, and my most comfortable communication setting is one on one. I do however believe that God has a plan and it is bigger than my own. I believe that there is a reason for each and everything I've gone through in my life. The good, bad, and the ugly. God has a purpose for it all. So, I stand firm in knowing that. Today on our way  home my grandma brought it up to the ladies that we were riding with that I had an incurable disease. They of course asked about it and I gave a brief description. Then it was quiet for a bit and I said "God Is The Cure!" Amen! Anyways, I am not a writer, but I am going to attempt it. I want to do what I feel lead to.

http://www.youtube.com/watch?v=0CifJ8kbRJs&feature=related

Oh No, Not Pretzels Again!?!?!?!

So, it turns out by going off Plaquenil I was doing what the Doctor asked after all. Last night I decided to experiment on myself a little bit and took one 200 mg Plaquenil tablet. I woke up this morning and again was in a fog, and I still am. I also felt it radiate through my hands and feet. Don't ask me it's hard to describe. My body has been doing plenty of weird things that don't make any sense to me. Anyways, I hope it doesn't last long, I have things to do today. Oh I guess I should also note that all my joints have been doing well! My back was sore last night, which is no longer surprising for people to hear me say. So, I iced it till I couldn't feel it anymore. HA! :D I'm still really tired so let's hope I have enough energy to get what I need done today! I'm holding onto God's promises for my life!

For the vision is yet for an appointed time, but at the end it shall speak, and not lie: though it tarry, wait for it; because it will surely come, it will not tarry. Habakkuk 2:3

Autumn Breeze :D

Today I don't feel much like blogging. There will probably be days that I don't at all. I thought since I am just starting that it is probably good to keep it up lest I fall out of the rhythm. I'm feeling good today! I'm very tired though. It was an early morning, this morning in a different time zone. Still getting used to another families routine. Even though I'm only in Colorado I think to myself, "I can't wait to get back to the states!" I know, I know I am in the states, just far from home. Oh how I miss the weather at home it's 92 degrees here today, and I'm burning up! I'm jealous of the rest of my family as they are enjoying Autumn already. I can't wait to see some of the leaves change! Tuesday I leave Colorado so I will be back in my normal time zone again. That will be nice! I'm having a good time here besides the not feeling good the last couple of days. Today we went to church; it was a really good sermon. Then we ate at a mexican restraunt, got our nails done, and tonight I am going to a movie with a friend of mine here!!! Then tomorrow I have to figure out how to fit all my stuff into my suitcase. I'm riding back with my grandma and 2 other ladies that have a car load already. So, it shall be interesting to say the least.

Peace, Mallory

Let His love be the wind in your sails!

Lord you are beautiful, your face is all I see! Last night I went to bed without taking plaquenil (dosage is 200mg 2x a day), and I still ended up waking up in a slight fog. However controversial this may be and despite what doctors have told me to do. I decided not to take my plaquenil again this morning. To tell you the truth the fog has already started to subside after being in it for 3-4 days. I didn't wake up with stiffness in my joints for 2 days in a row now. I would say that's quite a blessing right there. The pain in my back caused by the onset and diagnoses of Acute Transverse Myelitis in 04/10 has finally started to wane. Even if just a little bit, that is better than none. When having to deal with it without cease for the past 6 months. It's exhausting. I have been icing my back all throughout the night, these past 6 months. I've had to exchange it for cold ones in the freezer every time I wake up. When I would wake up in the morning the ice pack on my back felt like a heating pad. That was because my core temp. is so high. I always need to have the air on high and freeze out anyone around me. Something very interesting though is that there only remained one cold part of my entire body; my feet. They get as cold as ice. So much so that they felt like they were burning inside. You know like when you are out in the winter, and your fingers are so frozen you need to put them under cold water first then start turning it to warm so it doesn't burn. That's the best example I can give. There is some crazy stuff that's been happening to me. Too many of them firsts and not necessarily good ones. However it is all for God's glory and his plans are perfect. I trust that!
Call unto me, and I will answer thee, and show thee great and mighty things, which thou knowest not.  Jeremiah 33:3

This has encouraged me a lot in the past 24 hrs : http://www.ihop.org/Publisher/Article.aspx?ID=1000066807

~ Mallory

Beautiful, Beautiful Butterfly!

Hey Y'all! Today I woke up in a little fog. I'm wondering what's up and why it just won't go away. I was awake for 1-2 hours and had to go lay down. I took a 1.5 hr nap. I then was up got myself ready and we went into town for a little while. After the second store I started to feel awful in my stomach. Oh and another thing the heat here makes me want to pass out, mostly because my core temp is already sky high! Thank goodness I don't have a history of fainting! I called the nurse yesterday and asked about continueing to stay on hydroxychloroquine (plaquenil). She returned my call today and said "that they want me to stay on it two more weeks to see if the side affects subside." That would not be my first choice, I just want to be off of it! It's making me lose my hair, like some people lose their marbles. Okay maybe not that much but I can definitely tell a difference. It is thinning out. :( My hair oh my beautiful thick hair. This morning while I was resting I was thinking about something that I wrote awhile back. It was about a butterfly. The process is really something. A caterpillar spins itself a cocoon and has to stay in it for weeks to months depending on the species. Then through all that waiting, staying, eduring it becomes a beautiful, beautiful butterfly! I love butterflies, they make me think of new life! As I GO THROUGH each and everyday of this, I think about exactly that. It's a proccess, a trial, a tunnel. Sometimes we can't see the light at the end of the tunnel, but we have to trust that it is there. We have to trust that when we get THROUGH it we will be that new life!!!

Somethings I've been reading are :
http://www.sixwise.com/newsletters/05/10/26/14-fruits-and-vegetables-that-provide-the-best-protection-against-arthritis.htm
&
http://naturalfoodsmerchandiser.com/tabId/66/itemId/3096/Spicing-up-health-with-capsaicin.aspx

That's all for now, Mallory

The RollerCoaster, some call it fun others call it scary and painful

So, not knowing where to start or what exactly to say, I start here. Today 9/16/2010 was a rough day. I am in Colorado visiting family. Over the past two days here I have been experiencing an uncomfortable fog. I told my aunt that I felt like I got hit by a truck. She said "what concerns me is that you know what that feels like." I thought well she has a very good point there. That is something I for sure have never experienced. Here is what I do know, I have been taking hydroxychloroquine (plaquenil) for about 2 months now. I think that it might have finally got into my system (rhuemy said it would take 4-12 weeks). Making my stomach as well as my head feel awful. So much so that I wasn't even able to concentrate. The fatigue that I have been feeling these past couple days is almost incomparable. This sickness is something that I never thought I would go through, but am now having to endure every moment of this gruesome disease. Something lots of you will never have or probably ever hear about, until now. Let me take you on this journey with me, as I feel that the very purpose of all of this is for HIS glory!

For my aching joints I am using capsaicin hot patch. Which does feel like fire. Note to self: do not ever wipe a tear away again after using capsaicin on the joints (even if you did wash your hands prior to doing so)

~Mallory