Thursday, December 29, 2011

Christmas miracle :)

So I have been really bad about doing this whole blogging thing. I don't really know how to get more like making myself doing it...but I do have good intentions. Honestly typing, writing, anything these things hurts extremely bad, so believe it or not I don't do much on the computer. Most of it I do on my phone, which is easier because my phone has swype technology so it is easier for me to "type" on that. Other than that I do very little on my computer and hardly any writing.

I was doing so well healthwise and I even made it through Christmas feeling great (more or less...I really started crashing on Thursday before Christmas, but I powered through to make it to Christmas.) Thursday I started getting tired and more tired and really achey. I started with the ankle thing again where I couldn't even walk really because my ankles and toes hurt so bad it's not even funny. But I still had stuff to do. We got my car back Friday afternoon but it still isn't fixed. The part hadn't come in yet, it came in today though so hopefully it will be all fixed up tomorrow. I really am starting to like it, even the fact that is yellow. I never lose it in a parking lot and it definitely isn't the same as anyone I have ever seen.

Anyways, Saturday was lots of Christmas Eve stuff. I made sure the house was clean for the people coming over on Sunday to our house. Mom and I grocery shopped for our party/get together we were having (which took forever and was fun with me and mom in pain) then I came home and baked cookies while mom finished her Christmas shopping for us kids. Then we went over to my aunt and uncle's house for extended family gift exchange. We were late because we waited on my sister to get off work so she could go at the same time with us. But we had fun, we ate a little first, then everyone opened gifts from each other. I got a cool applique for my wall with a Dr. Seuss quote on it. I love Dr. Seuss so my aunt thought that would be cool for me. It is the quote that says, "if things start happening, don't worry, don't stew, just go right along and you'll start happening too!" which just so happens to be from my favorite book "Oh, the Places You'll Go" :) I also got 50 bucks from my grandfather and step grandmother which is always good. I love money! haha! After that my mom and I went to the Christmas Eve late night service at her church. It was ok. Not my favorite, but it was it worked.

Sunday I woke up and made my family breakfast casserole for breakfast. Then of course we opened presents. I really wasn't expecting much for Christmas this year, but got quite a bit of stuff. I got a donut maker so I can make gluten free donuts, an amazon gift card, lots of candy, colored pens so I can write in my planner lots of pretty colors!, an awesome orange camouflage bookbag for me to carry all my books and stuff to school in the spring :), 2 thermal tshirts, a pair of pajama pants with snoopy on them, an auxillary cord to plug my ipod in my car to listen to it, and because my old ipod was broken and we didn't know if my phone would work with it or not a new ipod which i didn't even ask for! :) It is little silver nano one and I got it a Carolina blue cover the other day and it is awesome! I love it, and I managed to get all my music off my old stinky Ipod onto my new one :)

So this week I've been pretty sick and it hasn't been fun. See I made it to Christmas being healthy, but that was it, but it's ok I got my Christmas wish, to be healthy on Christmas. At 2:30 in the morning on Dec 26th I woke up vomiting violently. I did it again at 4:30 in the morning and 8:30 in the morning. I haven't done it since then but have been extremely nauseous since then. I have also been having abdominal pain that has been pretty intense at times (today for instance after dinner it had me in tears doubled over in pain and mom made me go lay in bed). My muscles have not felt right at all. I have had a lot of weakness and joint pain and my lightheadedness/dizziness is back. Oh well...hopefully it will go away soon. I really haven't gone anywhere this week except Tuesday I went to walmart to buy my ipod case and a camera case for my camera. Then mom and sis and I went to see the movie New Years Eve--which was good--and we went to dinner at Cheeseburgers in Paradise. Yesterday I tried to leave the house and run errands with mom but I was to nauseous to do so. Today I sent some old textbooks I sold online and went to Walmart again and met mom and sis at Chilli's for lunch. That has been it. I went to bed after that and have been there pretty much for the rest of the day :(

I have started getting some of my textbooks in that I ordered online for my classes that are this semester and that is getting me even more excited for school to start. I have my bookbag packed and my colored pens and I am so excited to get to learn some of this stuff. Some of it looks downright scary though. I am also very nervous though. I have no idea how or if I will make it through the semester without having to drop out. I just had one really good week health wise and it has pretty much knocked me on my butt this week. I have no idea how I am supposed to go full steam ahead for 3 months in a row. But we will see. Hopefully it will all work out, I really think it's in God's plan, so it should work out :)

Tomorrow I am going to the evil family doctor to talk to her about writing me a letter so I can get disability services at school. We are also going to talk to her about seeing if she will approve me for a handicap placard for my car. I have very little muscle tone and control and my joints hurt so bad all the time. Plus if I stand up for about 5 minutes I immediately feel like I'm going to pass out and get all clammy and shaky and have to lay down. At ISU the closest student parking lot to my classes is about 3 blocks away and I will never make it walking that far at this point in my life, especially in the cold weather (especially when it snows). So we are hoping that she sings the form for me tomorrow, or else we will have to go to plan B which we aren't sure what that is yet. There are handicapped spaces that are right next to the buildings that my classes are in, so that would be a blessing. I'm not going to be one of those people that abuses it, just uses it on days when I really have no other option. Right now on those days I just don't drive anywhere, because I know I can't walk far enough to get into the stores, let alone make it through the stores, so here's hoping she is in a good mood tomorrow. Also, mom is going with me to advocate for me and back me up. I am also bringing the newest edition to my life--my health journal. One day last week of like the 3rd day in a row of me waking up at 4 in the morning and not being able to go back to sleep I started a health journal. I keep it with me all day long, and every time anything in my body feels off I write down exactly what I feel and what time it is. Some of it just says continues all day but some of it is more specific. I am hoping that this will not only help me back myself up with mean dr, but also help the rheumatologist I see at the end of January have almost a whole month of very specific information to help me get more confirmed answers.

So anyways, that is about all I have for right now and my hands are pretty much numb I've been typing so long and they hurt super bad. So I'm gonna stop now. I will try to update tomorrow after my dr's appt or something. Also, gonna try to get my Indiana driver's license tomorrow so next week I can register my car when I get the title in the mail :)

Have a good night everyone!!

6 days til my new small group starts
11 days til classes start :)

Wednesday, December 21, 2011


Honestly, I just had to think for like 3 minutes to figure out what day it is...I am so tired, but for some reason I can't stop doing things. It's like I've reached that maximum potential point of doing nothing, but I am so tired, I need to take a break but just can't figure out how to make myself stop. My mom's house has remained spotless every day, all the Christmas presents are bought and my mom bought the presents for all the extended family and I got them wrapped up. The house is decorated, my Christmas cards were sent out. There is really nothing left to do, but sit and wait for that blessed event that happens at the end of this week. But I feel so like complacent and anxious and I don't know, almost upset about Christmas this year.

I don't know if it is because I am so freaking poor this year (which actually considering I was able to quit my job the first day of September and make it to now and still have 10 dollars in my bank account is kind of a victory to me...especially since I spent about 400 dollars on the Salisbury trip) but I am very much more aware of the complete ridiculousness that 'we' American's have made this holiday. It is supposed to be about the birth of Jesus, family, friends, spending time together, reflecting on the year, etc. But instead starting around Halloween time there are commercials, sales ads, displays, etc of stuff to buy for people. Half the stuff we don't need at all, the rest of the stuff is completely unnecessary or inappropriate for the people we are buying it for (really, what 9 year old NEEDS an Ipod touch or anything like that). It could also be the fact that I literally about 2 months ago went through my house and threw away or gave away about 90% of my posessions and it really didn't phase me that much once I got over the initial shock, and let me tell you, I haven't missed one thing (except my desk but I don't have space for one anyway here). It could be the fact that I know there are millions of people that don't even have clean drinking water, a place to sleep, food to eat, a warm coat, etc and there are people spending thousands of dollars on their kids/friends/family that literally have everything they NEED and more.

I have had a very hard time this year coming up with a Christmas list, my mom keeps saying you keep changing your mind. Well it's because I keep asking for stuff...stuff that I want and could use and wouldn't put to waste but it's just stuff. I don't really NEED anything, my mom makes sure I have everything I need and more. Now the things that are on my list are thermal shirts, jeans, and sweatpants (because dang it's cold here), a donut maker (which mom I know you're reading this and I really want a donut maker), and a jewlrey box. I also asked for some books for a Bible study that I am starting at my church next semester and text books (but she graciously bought me both those things without making them my Christmas presents but I have to pay her back when I get my retirement/school money). But that is about all I could come up with and I feel bad asking for those things even. Sidenote: I did really want a Keurig, but I talked myself out of it and told mom to remove it from my list, they are still too expensive for me to justify.

I also am bummed because I didn't get the opportunity to buy presents for those that can't afford them this year because I'm a person that can't afford them this year, but not to the extent that they can't. But I always enjoy doing operation Christmas Child, angel tree, etc. There is a community center here called 14th and Chestnut and when I was in starbucks the other day (as in Monday) there were still about 20 kids names that hadn't been taken off the tree thing and that is just in one drop off location, it almost kills me to know that those kids aren't going to get anything for Christmas, but I don't have the money to make that come true for them, oh how I wish I could buy them all just one gift.

But anyways, I'm going to stop ranting about corporate America greed right now. In other news, the service engine soon light in my new car was on when we got it so I've been sans car all week while it is in the shop getting repaired (for free thank goodness since we just got it and it had a 30 day warranty) but should hopefully get it back in the morning or at some point tomorrow. Also, I have been feeling amazing this week. I really haven't not been able to do anything I wanted to do this week because of my health. I am very much more tired than I was on Saturday, my first really feeling good day, however, I am still going strong. I have been and know many of you have been praying for my Christmas miracle/one Christmas present I really wanted which was to be healthy on Christmas and it looks like I'm going to get it! Today was day 5 in a row of me feeling semi-healthy and I can't remember the last time that has happened. One of my friends commented on my facebook status about it with just one simple word: blessed. But seriously, through all this, I seriously think I am one of the most blessed people in the world. I have bad days and good days, but I have had countless, unending, prayerful support throughout the entire process and God has worked it out perfect for me at this time. Not all the answers have been yes, but everything has been answered appropriately.

So I'm going into this Christmas season kind of bummed I couldn't do more, kind of pissed off at corporate greed and people spending money they don't have on things the people they are buying for them don't need, but extremely grateful for the past 4 months of my life, the learning that has taken place, the growing that has taken place, and the fact that God has allowed me to stay positive/hopeful/peaceful/and expectantly waiting for the beautiful things he will do in my life.

Exciting happenings coming up soon!!!! :)
3 more days until extended family Christmas celebration!
4 more days until Christmas day!
14 more days until my new small group starts!
19 more days until classes start at Indiana state!

Sunday, December 18, 2011


So my plan for this week was to blog every that would ever happen...but this time I had a really good excuse at least for 2 of the days...

Remember how I said I was having a really bad week, well it got worse, although then it got way better. Wednesday I went to my mom's work to eat lunch with the united methodist women and afterwards I checked my phone and had a voicemail from my GI's office in Indianapolis that told me to call them back ASAP. Well, when I called them back they told me they got the lab results back from the bloodwork that I had done on Monday and my hemoglobin was critically low at 7.2 and I needed to go to the ER immediately and tell them I need a transfusion. I've done this a couple of times now (I believe this was my 4th transfusion in the 2 years all this has been going on, it was at least my 3rd for sure) so I knew that it wasn't I'm gonna keel over and die low, although I was as aforementioned feeling horribly run down and tired, so I waited until mom got off work so she could take me since I didn't have a car now. So we get to the ER and i'm pretty much taken back immediately too good to be true. But then they decide since it is 6.8 now and I have this problem and other problems and all my joints are swollen super bad that they want to admit me and observe me during the transfusion not just give it to me in the ER and street me. This would be ok if they started my transfusion in the ER at least but no, we waited 4 hours for them to get me a room. Then I waited another 3 hours after that for them to get the blood to me. If you've ever had a transfusion you know you can't really sleep during it because they take your vitals every 15 minutes and at this point it is 10 oclock. The transfusion finished at 4 am and I got very little sleep during the process. They finally let me go at 10:30 the next morning after I got to the ER the day before at 4. Uggg. Also, I know for a fact that I am O+ blood, during the transfusion they gave me 0- blood. I asked specifically about it and they said no you're O- and I'm very certain that I'm O+, my mom is, my dad was, my sister is...I've had multiple transfusions and used to donate blood as often as possible before I got sick, I know I'm O+, this concerns me. O- blood is a universal blood type so I'm not really concerned that I have the wrong blood type in me, I'm just more concerned that they think I'm O- after running a type and cross and me questioning it and everything. I know I'm O+ I have to be since both my parents are. You can also reject blood transfusions and it sometimes takes up to 10 days to do so. I wasn't really concerned until I developed a rash today, but I don't have a fever or anything so I think I'm ok but it still makes you a little nervous...

Anyways, Thursday night I was exhausted and I have a horrible cold. The cold I attribute to the fact that my meds are finally working since they are immunosuppressive. Since I had a cold and I was exhausted I took some store brand nyquil stuff and I could not wake up for the life of me on Friday. Mom called me at 10:30 on Friday and told me to get dressed because I needed to look at a car. Her and grandpa showed up with a car for me to look at and then with no details being spelt out long story short confidentiality at 4 o clock on Friday afternoon I was given a 2004 nissan sentra that is in my name that I didn't have to pay for. Praise the Lord for that burden being lifted! It is BRIGHT yellow, which is taking some getting used to, but it was free to me and is very well taken care of with only 68,000 miles on it, key less entry, brand new CD player, and a sun roof. I can get over the color, I promise. The requirements I wanted for a car for me were cup holders, 2 cigarette lighters (one for cell charger one for radio adapter for IPOD), heater, and key less entry and it has that and more! I am naming it (I name all my cars the Honda was Peyton Rowan) Zippy because the guy at the dealership told me to be careful because it had a little zip to it and I think zippy fits the car well and I have another friend with a car named zippy so it has a good namesake. Unfortunately I was too out of it on Friday to enjoy it.

Saturday was the best day I've had in months. I did stuff from 8:30 AM on Saturday until 1:30 AM on Sunday straight and felt good the whole time. I cleaned mom's house, we went to 5 different stores, I made 3 homemade Christmas presents, and I did some more stuff, it was great. Today I was still busy. I went to church online while working on another Christmas present, made homemade vegetable soup for lunch, went to get mom's Christmas present, came home. Made an amazing salad for a snack, made no bake cookies, then mom and I went to the grocery store and I made dinner of sloppy joes and french fries. One of mom's friends cme over and they talked for hours and I went to starbucks in the middle to get us coffee and we had fun. Now after all the goodness I've had for the past 2 days I am exhausted. All my muscles are horribly achy and some of them are going numb. I need to go to bed and I have a feeling tomorrow is going to be a bad day, but at least I had 2 really good ones. Perhaps I won't have a bad day again til after Christmas, maybe I'm getting my Christmas wish! :) I should be feeling pretty good though because this week I've had my treatment, 2 units of blood, and managed to keep my all meds in me every day. I really am feeling better, hopefully it's a new trend. For right now, I'm signing off and saying goodnight. I hope y'all are having a great last week before Christmas :)

Tuesday, December 13, 2011

God's Promises

So I haven't done this in a really, REALLY long time. There are a couple of reasons. One being while I was in the beloved Salisbury I didn't have my computer hooked up to the internet so it was pretty impossible to blog, blogging on a smart phone would be very frustrating. Two the entire time I was in beloved Salisbury I was very sick and resting as much as possible so I could see at least a few of you lovely people. Third, since I've been back I've been depressed, confused, and frustrated for reasons you will find out about in a minute. But now I'm back. Mainly because today has been one of those days where everything that could go wrong would go wrong and do it to the extremes. It is also one of those days where I had very little energy and gumption and those two things combined are not good and I have spent most of the day crying, and being in pain and the bathroom because those are the two things that come when someone with my disease gets stressed out, frustrated, whatever.

I will start out with a positive story though. Four days before I left for the beloved Salisbury I got violently ill, like passing out, vomiting, high fever ill and we ( mom and I) were for sure that not only was I going to have to postpone my long awaited trip to the bury but probably end up in the hospital. But miracle of miracle I got better like two days before I left. The day before I left I was pretty tired but just knew that if I could get to the Bury being there would give me the energy to get through it and revitalize me. The first day of driving was glorious. It was snowing and raining at the beginning but that cancelled some heavy duty road construction that usually doubles your travel time through Indy. Then once I was through that there was like that gorgeous beautiful rain that you know only God can provide with the blue sky and the glistening rain coming down through the pure white clouds and the sun glistening through it. It was amazingly beautiful, then I looked off to the left and saw a hawk flying through the air and that has always been to me a very spiritual sight. I remember driving on the way to my 3 month mission trip in Gatlinburg, TN and seeing the same thing and just feeling like God Himself was in that hawk soaring over me and protecting me on my drive and that is how I feel everytime I see one. They are so graceful and majestic and just awesome just exactly how God would be. Then I looked in my rearview mirror and saw seriously the most gorgeous, full, vivid rainbow that I have ever seen in my life. I wanted so badly to pull over on the interstate and take a picture of it, but that is generally frowned upon and I was making good time and wanted to get to the hotel before my body fell apart. But at that point, little idealistic, optimistic me was convinced because of the heaven ordained rain, hawk, and rainbow, and the fact that I was still feeling good meant that this trip to the Bury was nothing but God granted and completely supposed to happen.

Until like 4 hours later. When the illness came on. Apparently McD's french fries have a beef flavoring in their oil that has a wheat derivative in it and it made me SICK. Like pretty much the whole second day of driving was from Hades itself, I had to go to the bathroom around every 30 minutes which is not easy driving 6 hours on the interstate and it was raining and I was cranky and my muscles hurt and the whole reason I wanted to get to the Bury on Wednesday was so I could go to church and see people. And of course as soon as I got to Misty's house the illness came on further force and the vomiting and unrelenting need for sleep (like can't stay awake if your life depends on it) started so I of course could not go to church because I slept/puked my way through it. Then I was still like bedridden sick for Thursday and Friday. Saturday I managed to tell myself I'm only in Salisbury for like 3 more days and I am going to see people. So I got up, went to my celiac group Christmas party breakfast thing and managed to eat a little bit of food and see some of my favorite people in the world. Then I took a really long rest/nap and then managed to go and see the Living Christmas Tree that night. Sunday I managed to make it to Sunday school, church, and lunch and that was totally awesome. But then I rested for the rest of the day and didn't make it to the tree that night. But I did on Monday night and got to see people on Monday for lunch and dinner. Tuesday was a so/so day and I saw people for lunch and dinner but didn't do much else. Wednesday I was sick again (I think because I ate salad on Tuesday at Palms and salad doesn't digest well so it was totally my fault but it was oh so good). Thursday I was supposed to leave but there was no way I had enough energy and will power to drive for 6 hours so I stayed for one more day and left on Friday morning. Friday was an ok day of driving and Saturday was a good day of driving. I didn't eat out on this drive home at all except ruby tuesdays once I was at my hotel destination which has a gf menu. I just ate my home brought snacks on the road. No more McD's ever. Sunday I was pretty dang sick. I think it was the combination of trying to do so much in the bury and being tired and being back here in the cold and the not with my friends and a lot and the fact that it was the day before treatment and I always get sick the day before treatment...probably because I really need it at that point.

Anyways, I spent all of Sunday curled up in bed in immense pain with a high fever and at that point where I can't stay awake anymore so I was asleep. Mom was really worried about me, but I came through it and Sunday night actually slept the whole night through without waking up once to go to the bathroom for the first time since at least July. I was so excited. Monday was treatment day. I was going to a new infusion center and it is 2 hours away and I wasn't feeling good so mom went with me. At first when I got there I was pretty upset because it is an infusion center where there are like more than one person in the same room and me and mom were going to take care of some personal financial phone calls and trying to get stuff set up and Indiana state better and plus I didn't want other people knowing all my business...but it is what it is and it turned out to be a blessing in disguise. The only other person in there while I was there started talking to me based on what I was telling the nurse and told me that she has like all the same symptoms that I do and she has something called dysautonomia. One of my mom's best friends sent us an email last week asking if I had been tested for this rare disorder that hardly no one tests for called dysautonomia. That was 2 people in less than a week that suggested I got tested for it. This woman started asking me questions and it was like I was talking to myself. Her fingers and toes turn white/purple/go numb all the time; her arms and legs randomly fall asleep and/or are numb and tingly all the time; her heart races; she has night sweats; migraines; blood pooling; dehydration constantly; anxiety; low blood pressure; constantly dizzy; passing out...I mean all these things the doctors have never been able to couple together this woman had the same things and she has a diagnosis. I want a diagnosis. There is not treatment perse for this dysautonomia but it would be a diagnosis. I talked to her about day to day life...about the fact that I can't make it through the grocery store anymore without passing out and she said to ride the scooter...I said I don't want to I don't look sick and she said well let them look at you and then stand up and pass out. The fact that I can't stand up in the shower long enough to take a shower and she said that she uses a shower stool. Standing in line at the dmv or anything like that is almost impossible. Her hair falls out all the time too like mine does. I asked her if she works and she just kind of laughed. It was so good to find someone to talk to about how I felt and someone that believed that I could look this good and feel this horrible all the time. Someone that believed that there are these things wrong with me and more and gave me a list of doctor's that may believe me too. Even if I don't get diagnosed with this dysautonomia at least I know there are people that feel like I do and there is hope for finding someone that believes me 100% and may help me find out what it is for sure. She also gave me a lot of facebook pages and support group information on dysautonomia and some funny ones too that will get me through the sucky days.

The negative part of this is the closest of the 3 dr's that diagnosis this in my area is 4.5 hours away at Vanderbilt, then Toledo is 5.5 hours away, and finally Cleveland Clinic at 7 hours away. It also takes 7 months to a year to get an appointment at any of these places. There are many more expensive tests and it would definitely not be a one day appointment thing probably like a week or so and my mom would definitely have to go with me because the tests are pretty demanding and energy draining and I couldn't do it by myself. But I see a rheumatologist in January and hopefully they will at least be able to start some of the testing/diagnosis/ruling out process and get me on the right track.

Today was one of those sucky days. Every day I have so much energy when I wake up and lately it has been pretty scant. I can't stand up long enough to cook anymore so I've figured out how to do it sitting down for the most part. I empty the dishwasher and I am so out of breath and sweating it isn't even funny. I am getting weaker and I can't tell if it is because I am trying to hard to do stuff or if I'm not doing enough. I feel like I'm doing plenty because I am completely exhausted ALL the time and out of breath and sweating no matter what I do. The first horriblly suck thing of today was that we decided to let my car go back to the people today. My bill was due yesterday and I don't have the money to pay it because I used my last money to go to Salisbury and lay in bed for a week there...and they offered to defer it but I won't have the money in January either and we don't know when my disability will get approved and how much I will get when I get on if we deferred it we were just delaying the inevitable. So I am now (or whenever they come to pick it up) carless and it sucks. I have had my own set of wheels for 10 years now and I know I rarely have enough energy to leave the house, but it has been nice knowing that I could leave the house because I had a car sitting outside and could just hop in and drive even around the block or something. Now I don't. I have to share with my mom until I convince my grandpa to help me out and get me a different one. I also found out that 2 of the classes I need for next semester are full and I'm not sure how to get into them. My muscles have been really acting like my potassium is low again, I can barely walk and it hurts like all my skin is tight when I do. Today is not a day I want to repeat again. It was bad.

But even with all the bad stuff that is happening right now...after so much affirmation had been happening I have to remember that my God said "I will never leave you or forsake you", He said "For I know the plans I have for you, plans to prosper you and not to harm you", "I am leaving you with a gift--peace of mind and heart." And two of my absolute favorites right now. Romans 8:38 "And I am convinced that nothing can ever separate us from God's love. Neither death nor life, neither angels nor demons, neither our fears today or our worries about tomorrow--not even the powers of Hell can separate us from God's love." And, like the story about the hawk above the story about the eagle from Isaiah and is so pertinent in my life right now: "He gives power to the weak and strength to the powerless, even youths will become weak and tired and young men will fall in exhaustion. But those who will trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint." And in this verse I have hope and a promise from my God that He will not let me fall. He will never leave me. He will help me through this and He has the perfect timing for everything to come together. I know this. I just have to keep reminding myself of it constantly. It is not easy. Especially on the days like today. But God promised me that this would be beautiful and it would work itself out eventually. So right now I am standing on the promises of God and waiting...expectantly...which is kind of very appropriate for this advent season. Guess my advent is just going to be a little longer this year....or years...until my expectant waiting is over and God's promises come full circle for me. Whether the promised answer be yes or no...or wait.