WELCOME

Hello,
Welcome to my Blog! Yes, I have been in the fight of my life against Leukemia, insomnia, depression, side effects of medications, molting skin, pooping my pants and this list goes on.... however, I still love my life, and that's what this blog is about Real Life. I hope to meet others who trails have brought them closer to the Lord and molded them for the next step in God's will. In January 2011 , my family, physician, and Be the Match was featured on a Fox 5 news story about bone marrow donors and transplants. In March, I was interviewed on Atlanta and Company along with Be the Match. I was chosen to sing the national anthem at the Be the Match Run last year and will also be doing it this year, along with some other songs. My team, no thanks to me, raised over $4,000 and raised more than any other team! Please join my team this year or consider donating here at the Run those Stem cells out ! Team I was also chosen for a patient advocacy panel for the international council meeting at Be the Match in MN in November. How exciting!! I ended up not being able to attend due to the relapse. I had hoped I could help raise awareness about how easy it is to sign up to be a donor and how many people need your help! Please go to bethematch.org and sign up! I was able to have my bone marrow (same as stem cell) transplant at the end of March thanks to a 22 year old donor oversees that I hope to meet her one day. As I came up on my 6th month mark and continued to add more normal activities to our lives, I relapsed, meaning that the that the cancer had mutated and the leukemia came back. I spent 2 more weeks at Emory and some other nights here and there and now I'm on a drug from the FDA. I have a compassion waiver so I am able to get it. I have to take it day by day sometimes hour by hour. Time keeps moving and my little girl is growing up. I'm lucky that I'm getting to see it. I continue to praise God for his wonderful blessings he has shown us including my wonderful husband Jonathan, baby girl Evalyn Rose, supportive family and friend, great medical care, new readers, and the chance to make a big difference, even if that means being a Lab Rat.
God Bless You!

Please read, comment, enjoy, learn, grow, LOVE LIFE.

Most Recently I have started a booth at a local consignment store with handmade jewelry from friends, crafts, and my own art from recycled materials. It is called DAY by DAY. God was very clear with me starting this. Please look over to the right of blog and click on Day by Day to see some pictures. I'm just getting started but I am taking orders from people that I know. You will be able to personalize items, etc. I just haven't decided how I will be selling them via internet yet. But for now, the jewelry is at A Weekend A'fair in Athens, GA and will hopefully be at some stores downtown soon.

Tuesday, August 30, 2011

Happy 3rd Anniversary to us!





We celebrated out anniversary on Sat night by going out to eat, playing some Ms. Pac Man, purchasing a Michael Jackson Bad Record (awesome!!!), and going to Groovy Nights, a fundraiser for Project Safe, in Athens. We had a great time dancing, meeting new people, and dressing up. We are so lucky to have each other and our sweet little girl. We pray this next year finds us more healthy but seeking the Lord just as much! We thank all of you that support our marriage and encourage us!
One of the few things Jonathan can beat me at....

Yes, that is a peacock on my butt.


We had everything already for our outfits, I just bought the pants I'm wearing.


Jonathan was hit on by women after women, it was so cute, he danced his heart out for me ;)

Then Elvis and Darth Vader came to visit.
video

Sunday, August 28, 2011

Medical Update 8/28/11

                   


                   I had three appointments last week and all seemed to go well. My OB is working with a reproductive specialist in Atlanta on my case since going through menopause at the age of 31 is not normal and won't be treated the same as someone older than me. Right now, I'm off of all hormones, and we will be doing a blood test soon that will let us know exactly what type of replacement hormones I need. We are waiting to see if my insurance will pay for it, but it is such an exact test that we'd rather come up with the money if we can so we don't have to guess and then change the meds, then guess... etc. I've been extremely tired lately and they are not sure if it is because of the lack of hormones or that new medication I started, probably a mix of both. Plus, I've probably been pushing myself a little hard trying to meet my standards of what a mother and house wife should be able to get done in a day, while still trying to make time for myself, and create small jobs on the side.... whew...  It seems by Sat or Sun I just crash and sleep most of the day. Anyway, my doctor feels that once I have that test and start the medication I should feel better all around. I'm a Guinea pig with all this so I'm sure it will be interesting at least. I hope to carry another child one day and found out that there is some financial assistance for people that need assistance after cancer. If I decided that it's best for me not to carry a child due to my health, then we may consider a surrogate, hopefully a family member would volunteer. I'd had always hoped to do that for someone else one day. I think it is so sweet.
               The medications are still making feel like crap. I get sick to my stomach often and sometimes don't eat very much (I think it evens out). I can tell when I take the exjade at night, about 30 min later my vision is a little blurred, tummy is icky, and I just feel weird. I've also had a lot of trouble sleeping and still wake up with night sweats or freezing. My doctor wants to do a sleep study on me after I'm off the steroids. He said that the it's interesting the amount of dreaming that I do, how much of them I remember, yet I wake up so often and don't sleep a lot. Boy, when they drive into this brain there is no telling what they are going to find. Maybe they will find out that I use 11% instead of 10% of my brain.  I found out my thyroid levels were a little low and and we are going to keep an eye on it. This runs in my family and it bothers me that there is not a way, or that they know of, to prevent thyroid issues. The radiation increase the chances, which is why it is happening earlier. Please pray for God's hand in all of this. I believe that if he can cure me of cancer he can cure me of the the other things as well. If not, pray that God continues to give the the grace to deal with these types of things while seeking him on a daily basis. Not your will but mine Lord. Sometimes without the thorn in your side, you might forget to seek him, aye? Or not seek out and help others.  That is why I keep reading the verse I have up right, over and over.

Thursday, August 25, 2011

Lunch with the Mayor, On the Panel, on to the White House

             
video

I have a bear on my back, what is your excuse? 
video
Hey You! Have you signed up to be a donor?? It saved my mommy! 

                  Just Kidding.... about the White House. I don't like politics and it's too cold in D.C. Now Jonathan.... maybe he could run for office one day, there's nothing to dig up on him. Clean as a whistle. This week as most has been interesting to say the least. Somehow between Dr. appointments and my classes, I have managed to leave the house every day. It's been a productive week full of medical paper work, playing and teaching Evalyn, planning drives, scheduling baby sitters, practicing children's songs and the national anthem, watching Andy Griffith during bouts of insomnia, cooking, cleaning, and paying more out in co-pays then I'd like. Oh, not sure if I put this on the blog, but I was chosen to part of a Patient Advocacy Panel for the Annual Council meeting for Be the Match in MN in Nov. They are flying us up there, hotel, and a lot of the food is provided! I will be able to not only share my story but also meet people from around the world who share this passion. I'm so excited!!! And there is an 80's party one night!!! I went to the thrift store yesterday and bought Jonathan the most hideous jacket and MC Hammer pants..... and a Cosby sweater. We are working on his dancing skills, he is getting pretty good!
             After Yoga today, someone mentioned that the Cancer center was having their open house and they had snacks. Being hungry of course, and wanting to talk to someone there about their programs, I decided to stop by. I sat in an empty seat at a table and introduced myself and realized that I was now having lunch with the Mayor of Athens, Nancy Denson. Come to find out, she knows a lot of my neighbors out here at the farm and even my grandfather. She was in an accident in May and almost lost her leg and now has to do 2 hours of   PT at home every day. Holy Cow! She is a strong and determined lady. I need to get off my butt and do my joint yoga more than once a week.

Monday, August 22, 2011

Fat Chick with a Mohawk

This may step on some toes, so if you are sensitive to your weight well don't read this or read and forgive me for ruffling your feathers. I'm only stating the obvious truth the way I see and feel it.

Check out this link from the movie Zoolander  http://www.youtube.com/watch?v=f4e-sVYnZoI
            I have been thin my entire life, except when I was pregnant of course, and you can't call someone fat if they are pregnant, even if they are fat and pregnant. Actually, I have been quite on the skinny side and it was a source of ridicule and hurt feelings for a good part of my school years. Beanpole, Olive Oil, were used to describe my bird legs. Why did anyone think that skinny jokes are not a hurtful as fat jokes. Jokes such as " having to move around in the shower to get wet." ha ha  Later on, I filled out a little and for the first time I felt pretty attractive. I did some modeling and seemed to be turning heads. It felt good and I used it to my advantage in most situations. My aunt would tell me I had Betty Davis eyes but what I remember her saying, " It's harder for attractive girls to get older than less attractive girls." She being an extremely beautiful women in her day, well she should know. Not that she isn't beautiful in her own way now, she just wouldn't make it on the cover of Vanity Fair at this point. I had always looked forward to going to my 10 year reunion and being thin and beautiful while I knew some of the people that were mean to me were very overweight now.... I didn't go.... it didn't matter to me anymore.
             So I'm not sure if I would ever consider myself "vain" about my looks, but felt confident that I was more good looking than most people and usually feel a quite bit more intellect then most the population.  Of course the chemo brain has caused a whole other issue with my IQ. Maybe I needed to be humbled a little. Yea, so I'm having issues with being overweight, not being able to wear my clothes, and not having any money to do anything like spa treatments (like that would do anything), and even exercise or eating healthy doesn't matter.  I do appreciate all of you being supportive and trying to encourage me but tread lightly. It doesn't really matter that I can't help it at this point... no one knows that when they meet more for the first time, or when I'm in the check out line. Does it matter if it's your thyroid, you overeat, on steroids, or whatever the case maybe. If your fat your fat that's what the world sees. I know... we are not of this world, and we shouldn't care what others think, and yada yada, tell that to my victoria secret jeans and my favorite pink heels.  Sorry, I'm fat for me and don't like it. If you don't know what to say, just don't say anything. I had a few favorites this last week.
               At the jewelry fashion show, I realized that I didn't necessarily "look" like a cancer patient anymore, but just a larger girl with a moon face and very short hair. I had someone say " Not everyone can pull off that haircut, I couldn't and you have a pretty face." Now, I should have taken that compliment and thought, yea, I do have pretty face, but kept thinking about how when people are fat, people will say things like "but she has a pretty face" or" she is a really sweet person." Now, not always, but sometimes.
           So I shaved my hair into a mohawk and dyed it purple. No, I have not shown my grandmother yet. Yes, I will post a picture when I get one. Did I do it for attention, as some have suggested? Maybe, I have no idea whats going on in this head of mine. I feel that I did it because I can do whatever the heck I want with my hair. When else would I be able to shave it like this.... next up... shave it again, let it grow some and get some braids weaved in... yea.... It will be like I went to Jamaica Man, and was "right near the beach" (quote from Halfbaked). Then I may let it grow out and see what it looks like natural. I also feel like it's a form of control, I don't have much control over my life but I can control the color of my hair, kinda like, in the hospital room when I unplugged the hospital phone first thing, some control= some sanity in my world.
           Maybe I won't be so quick to judge when I see someone with a gross piecing that I think is hideous, or hair that is 4 different colors, or clothed in all black. We don't really know what people are going through and why something makes them feel more in control, but hey if they aren't shooting anyone or something else illegal, we should consider ourselves lucky. It's a rough world out there, shave your head if you have too, just don't expect me not to stare. We can have a stare contest. I will win, I can sleep with my eyes open.

Peace, Love, and Mohawks
Heather

Sunday, August 21, 2011

I get up and I went down again...

            After today, meaning Sat, I hope that I have grown new bone marrow in my toes or somewhere, because nothing else productive happened. The night before I went with my cousins out to eat and to a jewelry fashion show and drove home pretty late but wouldn't have thought it would have put me in bed most of the day. I even took it easy on Thursday and Friday morning knowing that I had to drive and would be up late. I missed the free dance class that I wanted to go to today and didn't do any of the craft painting I wanted to get completed while Evalyn was at Grandma's. You know I hate to waste time. Jonathan said that he kissed me bye when he left to get Evalyn and I didn't wake up or move. I'm the lightest sleeper in the world and would normally wake up if someone touched a door knob.
            Right now, it's 2:30am, just kept waking up I guess since I was in the bed all day. I didn't even have energy or the humor to write my new blog " Fat chick with a Mohawk". I hope to have more energy tomorrow, we will see, and if I don't maybe I'm working on growing new bone marrow. Now I'm going to watch episode 30 of The Andy Griffith Show. I'm waiting for Happy Days to get added on Netflix... they should take requests.

Friday, August 19, 2011

Happy 13th months Evalyn !!!!!

She had twins, Lucy and Ethyl

She loves her chairs. I'm a big girl!


                        Evalyn is growing up so fast! She is starting to be able to play with other kids more, even though we are still being super careful, and seems to like most everyone. She likes to share, and loves to have baby talk with other little girls. I wonder what they are talking about. She has been very "testy" this week and is just pushing the envelope like her dear old mom does everyday. It's so sad to have to punish her and exhausting to be consistent, but hey, thats what you sign up for, right? As you know, Evalyn loves dogs. We went for a play date to some friends house this week that have two little girls and have offered to watch Evalyn sometimes, and they have two dogs. The pug has a tongue that is too big for his mouth so it hangs out the left side. I have to get a good picture of him. Evalyn of course hugged, kissed, and squealed all over him. The two little girls, 2 and 4, were so excited to have Evalyn over they almost didn't want to share her, like she was the new toy! It was super cute. I think they are going to grow up to be good friends and we hope to be good friends with their parents.
                  Evalyn learned how to put something back while we were making one of the shakers for music class, when one of them broke and noodles went everywhere.... now we have to work on the toys and books :) She understands most everything we say but right now she is not understand "no"when it comes to picking up rocks and gravel outside, so there were a lot of tears over that this week. You should see Evalyn and Wallace riding together in the bike trailer. I don't know how they fit in there together but they are snug and it is so cute.... again need a picture. I'll get on it. She is starting to be at that age where she wants to help but she isn't acually helping.... I try to capture teachable moments and be patient with chores so that she can learn. That means sometimes the dishes do not get done, dinner is a little late, or something else isn't perfect. What's more important, anyway? Give me a break.
             Books are one of her favorite things on earth. She will sit in her little chair by herself and look through all her books. She also loves music and has amazing rhythm with the shaker. It's so cute when she tries to sing with me, especially to old McDonald. We have the farm animal toys and she like for you to say with one to get and she will go get it and line it up and wants you to make the sound the animal makes. Watching the hummingbirds, checking on her play house, and learning to shoot hoops have been fun activities this week. Music class wasn't very fun for her because it was her nap time and she had to share her mommy's guitar. Well there is the update on the little lady.... next I'll tell you about my mohawk!

Monday, August 15, 2011

Medical Update 8/15/11

Hello,
         My Emory appointment went very well. I actually found out today that my last blood test came back cancer free so I'm considered to be in remission and the transplant a success!!!!!! Praise the Lord!!! My new immune system has a long way to go and the medications will be around for a while. I didn't expect any news and didn't really feel that it was big news so I didn't even tell many people that day. I guess I just figured it was working or I would be dead. It's not the cancer that ever really bothered me or made me feel bad, it's the treatment and the recovery. I'm am thankful to say that I'm in remission and try to think about that as I deal with the side effects of all the other stuff. Dr. Khoury took me off the medication that was making me feel so bad for the weekend but I have to start it back today. I felt so much better this weekend not being on it, so at least we have narrowed it down. He said I have to be on it at least a year but we are hoping my body gets use to it. I'm going to try it at night.
        Remember that if a young lady overseas would not have signed up to be a donor, I wouldn't be here right now. Please sign up to be a donor, people are waiting. bethematch.org. Really tired today and don't have much to say. Going to lay down for a bit.
Love,
Heather

Thursday, August 11, 2011

Do you want the good news, the bad news, the cool news, the depressing news, or do you just want to watch the news and not read this blog...

Muscadines are now in season.... picked some up at a stand.... this makes me very happy.          

        I woke up with the monks again last night. 3 am is an interesting hour. I'm never sure what to do with myself. Sometimes I pray for people, sometimes I watch a cool documentary that Jonathan would care nothing about, or read some, or blog, or just sit there for a little while and think, "seriously, is this really happening, has this happened." The latter is what I did last night, and then fell asleep in the recliner till 4 or so. That gave Jonathan a chance to sleep since I'm officially a snorer. See the swelling from the prednisone is making me snore, at least that is what the docs are saying but we won't know for sure until I'm off the meds. The new medication, Exjade, is making me feel about 10% more like I have chemo brain and making me a little sick to my tummy.
             Someone gave us some money today to help with finances, then I got a speeding ticket.... I was really sick to my stomach and was trying to get home. The Cancer card, nor the sick card, worked on this officer, maybe my eyebrows are a little to thick now. Anyway, I have to go to the court date to try not to get the points on my licence, so I will be dying my hair a crazy color and then shaving it before the court date. Hey if I have to be part of the system I might as well work it. I'm going to get the Dr. to write a note proving that I indeed just started this medication and was in all likely hood about to poop my pants. I don't generally wish for vomiting but dang, I wish it was coming on that way so at least I could have got it out while I was parked and maybe out of the ticket.
              I found out  today that I am indeed singing the National Anthem at the Be the Match run on Sept. 24th!!!!!!!!!!!!!  I'm so excited. This is the third musical opportunity I have had in the last week. God is good, and since I'm not typing so much for work, I feel like playing my guitar since my hands don't hurt so bad. I did however, pull a muscle in my hand spray painting a flower pot I got at a yard sale. Who knew spray paint could be so dangerous.
                 Tomorrow, at my Emory appointment, I hope a few things. One, that he will tell me these side effects will go away, because I feel like crap. That he reduces my prednisone and I don't break out into a rash or have more GVHD that causes me to stay on it, that he will tell me I can vacuum, that I can clean fish, that he will donate lots of money to my Be the Match Run team, and that I don't have to come back to see him for at least 3-4 weeks. Oh, and I want to win the lotto, I must play first, so that I don't have to deal with insurance, cobra, SSDI, medicaid, and whatever else paperwork is being given to me.
                I'm driving myself in the morning so pray for that and I'm super excited about going to breakfast with a girl that had a stem cell transplant the week after me and we have kept in touch. She is finally able to get out more and we are going to celebrate. I look forward to seeing the staff at Emory, they are always so encouraging and I love that they know me, I feel like VIP there ;) Of course, you catch more flies with honey than vinegar and I can lay down some honey, but isn't that so much easier anyway?


Tuesday, August 9, 2011

It's a new life.... and I'm feeling good

Birds flying high
You know how I feel
Sun in the sky
You know how I feel
Reeds driftin' on by
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Fish in the sea
You know how I feel
River running free
You know how I feel
Blossom in the tree
You know how I feel
It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Dragonfly out in the sun you know what I mean, don't you know
Butterflies all havin' fun you know what I mean
Sleep in peace when the day is done, that's what I mean
And this old world is a new world
And a bold world
For me
Fooor me

Stars when you shine
You know how I feel
Scent of the pine
You know how I feel
Yeah freedom is mine
And I know how I feel
It's a new dawn
It's a new day
It's a new life
hu
It's a new dawn
It's a new day
It's a new life

It's a new dawn
It's a new day
It's a new life
It's a new life
For me

And I'm feeling good



       I love that song. Not sure if I like the Nina Simone version better or the Michael Buble, but either way, "feeling good" is a great song. Hmmm.... Muse does a cool rock'in version that I just found. It's so awesome when you take a leap of faith and are obedient to what God wants even when it may not make sense in the worlds eyes, how God will start to open other doors. Just in the last few days, I have been given a scholarship to Full Bloom so that Evalyn and I can go to all the group classes for free, I have had a cousin call just to see how I was doing and is volunteering to come up and visit and help out for a day, my aunt and uncle seem open to coming up every once in while to sit so that we can have a date, my Dad and Faye are going to start sitting for a couple hours on Wed and Pop and I are going to do our grocery shopping together. He's going to push the cart and I'm the "runner." Hee hee. I have been given 3 singing opprotunities: I'm leading the children's music group next Thursday at Full bloom, I'm singing at the Mama Baby fashion show Sept. 3rd, and I'm waiting to here about me singing the National Anthem at the Be the Match run on Sept. 24th. It's that step of faith, not knowing what is on the other side, not being in control. Man, we are control freaks aren't we? Not that I believe God just wants us to sit away and let life happen to our idle selves. I watched Evalyn trying to figure out her new outside chair. She doesn't have the trust or understand yet to just look at the chair, turn around, and sit down. She has to look at it, climb in almost standing, then sit down. This can get kinda dangerous. Sometimes we just need to sit down in God's chair he gave us or we are going to fall off the chair, scrap our knee, and get dirt in our hair.
Evalyn is always the star of any party. 

               WARNING  SOAP BOX: Ha, if only our consequences as adults were so simple. Finances are still an issues and things will be tight till Jonathan gets a better paying job, or I get better enough to start working again. This is mostly because of insurance issues, aka health care, let's not go there. Ok, I'll go there, but you don't have to. Let's just say we fall in the middle class preexisting condition crack where if I did not have the option for cobra, or Jonathan didn't have a job, I would die because no insurance would pick me up. We make JUST over the limit for a family for me to get medicaid insurance. So when we do the math, someone making less than us actually ends up taking home more than us because we have to pay so much for insurance. So if I magically get another kid or Jonathan get laid off and get's unemployment, or gets a pay cu,t half of our money would not go to getting the care I need and we would come out ahead. BS. No wonder there are people that can't get off the system. I'm thankful for what insurance I can get right now, even though it is expensive.... this new medication is over $13,000 for a 90 supply. That's just one of my meds.
AJ and Ben. I threw a wedding shower for them with the help of  some ladies at the farm. 

         I'm already feeling better not being at the computer for hours at a time. My bones are not aching as much and I'm having as many cramps. I'm still working my butt off on house stuff but "moving" is so much better than just sitting. Still have to get permission to vacuum and clean fish, but I'm going to pick that bone with Dr. Khoury on Friday. I was hoping to go Kayaking on Sat with my sis and bro, but I still have this rash on my legs so I'm thinking that he is going to say no. If it is a no, then we are going to an indoor rock climbing place and out to lunch... coupon books in hand of course. I got kinda freaked out at church the other day, the girl at the nursery had wrappings around her legs. She said that she has a brier cut, some kind of sand tick got in there, had babies in her blood stream, and she has big blood blisters from the infection. Bless her heart, they gave her 50 mg of predisone and nothing to help her sleep or calm her. Some doctors can be so cruel. I usually don't push drugs but I let her know what has helped me and she doesn't have to feel like a chicken with her head cut off.
            We tried a new church on Sunday. It was pretty good, they gave us a spiritual gifts test and I scored the highest in Creativity and Leadership. There is a lot of them. I'm make a copy and get my cuz to help make a printable link if you want to do it. The sermon was good and explained the difference between talents and gifts. The pastor mentioned that the church always burns people out by not letting them serve where their true gift is. For example, if someone is a teacher, the first thing a church my ask them to do, or they may think it is all they can do, is teach. Now why would anyone want to teach all week and then teach on Sunday. Not me. I had someone the other day tell me how great I would be at event planning and could have a good paying job doing it. Well,  I do like event planning, but that usually always leads to working on the weekends, most weekends. I don't think I could handle psycho brides. I think I'll just use that talent for friends and family and put on some fun parties. I'm working on a "Double Dare" birthday party idea in my head now..... if you don't know what that is..... Google.  I liked the music because it was the old hymns I grew up with, nice and simple, no cheese. I do think there should be a 2 comment limit per greeter, about coming back. Not sure why that gets on my nerves, but good greif, my cheeks start to hurt from fake smiling. We didn't get up and leave, so that is a good sign. My grandparents acually went to that church for quite a while. Next week, we are trying Athens church, they are starting a 12 pm service...... HOW  COOL IS THAT? This is lead by Andy Stanley and I've watch some of his stuff online and I really like him..... now the music.... we shall see.
                     This week I have to start that new medication, Exjade, that I have been dreading. I'm so glad that my mom is coming up for a few days! Our friend Marlin is coming up also, he makes us steaks and brings me good cookies. I will be going to Emory on Friday for level checks and hope that they continue to reduce my predisone and other medications. Hopefully, my snoring will get better soon, poor Jonathan is not sleeping well because of it, and I'm getting tired of him waking me up. My nexk is all swollen still so hopefully that will go down soon! Please Lord!



Feeling 80%,
Love, Heather
               

Monday, August 8, 2011

The Big One-Learn to let Go

Reasons to let go and take care of myself.


         Hello Everyone,
                                  I haven't been in touch because nothing much has changed with my health and we had some huge decisions to make last week. We decided that it was best for me to stop working at this point. It was causing a lot of stress when I'm trying to get better and it seemed like there was wall after wall when it come to getting work completed. It would have been great to have two paychecks for a while.... we have a lot of needs.... another car, to pay of student loans and medical bills, and some home repairs. Paying for Cobra is going to be very expensive also but oddly still less than going through Jonathan's insurance.  However, with Jonathan working now, I just couldn't take care of myself, Evalyn, the house, and work every night and weekends. I'm too hard on myself and feel that I have to be productive 100% of the time, when I need to realize that I am being productive by getting better and teaching my little girl. The minute the decision was made I felt a burden lifted from me and that night was the first time I didn't wake up with the monks (3-4 am). I'm not in as much pain because I'm not setting at the computer for hours at a time.
                          I'm still trying to have some time to myself of course. On Thursdays, I'm doing free cancer recovery yoga and try to have a sitter each Thursday. On Monday's,  I will be starting a broad way dance class that I got a sponsorship for last week. On Tuesdays, I'll be taking Evalyn to play with other children at this place called full bloom. I also found this community cancer support group that has a lot of resources and free classes. I'm about to start taking over grocery shopping and I'm trying to cook dinner more often.
                      Prayers that are needed are for us to be obedient with our finances (insurance), that we stay healthy since all three of us are now getting out in the world more, that my SSDI would come through soon to help pay for insurance, and Jonathan would have safe drives to Madison and back.

                I'll let you know how the first week of being a "stay at home mom", but don't worry I have some advocacy stuff up my sleeve, writing, crafts, and a toddler, I don't think I will get bored. Starting Jonathan's laundry this week, first time since being married :). Maybe He will get some sweet tea soon.

Love,
Heather

Tuesday, August 2, 2011

Medical Update-8/2/11- Just going to face the wind

video
                         Evalyn playing with a toy at Jill and Steve's house, She likes the wind more than the balls.
             It's been pretty rough, I'm not going to lie. There have been absolutely wonderful moments in the last few days that I will cherish and by God's grace I was able to enjoy despite the pain and sickness, such as the video above from small group tonight. Evalyn sitting in her chair entertaining herself with her books when I was sick and had no one here. The look on her Daddy and her face when they have not seen each other all day.
            I will refer to last nights sleep as "the screams". First, I woke Jonathan up screaming my head off with a horrible cramp in my leg. The cramps and pain in my bones and joints are getting worse this week probably due to reduction in steroids. So it will be worth it in the end. I had one cramp in my hand today that lasted 10 min.  Later that night, Jonathan woke up yelling about a spider or a bug that landed on him and was crawling my way. I think he would have knocked me off the bed if he could have to save me from the creature. So after a couple adrenaline rushes, lets just say there was not a lot of sleep. I got up and piddled, not to mark my territory, around for 45 min and then when back to bed, where Wallace was laying upside down on his back.
            I woke up with the shits. Yep I said it. Or wrote it. You all think it. Do not think that at certain points today I was not afraid of having to change clothes. It has happened to me before. I changed my plans this morning so I could stay close to the toilet.  If I could set up a poll on here, I would, and you could anonymously check if you have pooped in your pants after the age of 10. I just picked a number. My head hurt, my toes hurt, bones hurt, everything hurt, and then on top of that I was thinking  I might have to go to Emory since stomach issues are one of the first signs of GHVD, which can happen as the steroids are reduced. I still have some serious hospital anxiety. I really don't want to go back, ever. I took some meds and luckily Evalyn took a pretty good nap so that I could lay down. Then I called my Mommy.
              I did start to feel better later, after 3 more pills, and Corynne came over and helped with Evalyn and we were also able to work on some art projects. Tomorrow, I have a CT of my sinuses and a dermatologist appt. Please pray they figure out what the heck these spots are on my leg. Hmm, hand cramp, guess I'm done for now.

Love,
Heather