Tuesday, September 6, 2011

I know...

It's been a while huh? I have had great hopes of keeping up with my blog more but life has been busy and bustling. It is just finally starting to settle into a routine for my big kindergartner.
Isn't he delicious? Look at those blue eyes! He loves school just like I knew he would. But finding a normal routine for me and Slobber Rocket has been slow going. I think we are finally getting there. We do errands and work out in the morning then lunch at home, nap, pick up Super Muscles from school. It has been great getting back to lots of time with the little brother.

I have also been kind of sick. Well, you know. Whatever. When am I completely well? Ha! But my hands and feet have been very numb and I have been having some weakness in my right arm, dizziness, extreme fatigue, loss of memory and coordination. So I had to go back to my Neurologists for more MRIs and tests. My neuro test was much worse this time with ataxia and over reactive reflexes in my legs and under active in my right arm. I have some sensory issues too. Cant feel my fingers and toes and under responsive to certain stimuli. Balance issues. The good news is that I am finally starting to feel a bit better. The bad news is that I am inching closer and closer to a definitive MS diagnosis. I have a couple more tests in October that will hopefully solidify a diagnosis (because there is no eliminating it and not knowing what is officially going on kind of stinks). Right now I am diagnosed as "probable MS". Thankfully my MRI is revealing some answers. I have kept up with working out throughout this flare and have lost no strength and that is how I plan to roll. Keep on keepin' on. Go about my life and make the best of it. Some days are daunting thinking about the future but there is no way to know how the disease will progress and taking care of my body will help me stay strong, active and mobile.

With that said, on Sunday, I am going to be participating in the "Walk MS" event in my town. I was encouraged to get out in the community and meet people who are experiencing the same things. So... ya know, I decided to go for it. My therapist will be proud of me for doing something so decidedly social :P. So if you could, would you consider donating to the NMSS to fund research and resources for MS? It would mean a lot to me.


I will update about Africa soon! I am getting my vaccines next week and we are about to send in for our visas. WoW! Very excited.

Sunday, July 24, 2011

Cancer Sucks

Yes, I know... nothing new or amazingly insightful. But I just need to get it out. Cancer sucks! Cancer sucks bad.

I have a sweet friend who has beaten brain cancer once and it is back now. Stage 4. She is in the hospital right now because it has maybe moved to her lungs. She is young... just a couple of years older than me. And she has 2 beautiful sons who are 5 and 4 years old. Their dad died not long ago and now their mom is very sick. It sucks. Please pray for my friend or send her healing thoughts. She needs them! It sounds kind of like there isn't a whole lot they can do for the cancer so I know that a miracle is needed. A miracle... unfair. I talked to her this morning and she is in good spirits but told me to get everyone I know to pray for her and send her healing and loving thoughts. So please do that for my friend. She won't know more details about the breathing issues shes having and pain until tomorrow but if I hear anything I will update.

Friday, July 1, 2011

Summer Bucket List (through the eyes of a 5 year old)

See Cubs play at Wrigley Field.
Watch Fireworks
Go to C's house
Go to the zoo
Play in the sprinklers
Ride a train
Watch a train at Culver's

Wow, hes an easy date. I think we can get these things done this summer. Fireworks on monday. Zoo, train and cubs when we go to Chicago in August. And the other 3 are very easy. lol. Hope its a fun summer for him though. I can't believe this boy is starting Kindy in August. He is growing into such a big, smart boy.

Wednesday, June 29, 2011

Tests and waiting... wee!

There are some things you never get used to admitting. One of the things I have the hardest time talking about with people is that I have something wrong with my body. Most likely I have Multiple Sclerosis. I need one more clinical symptom to get a diagnosis. And since I definitely have lesions on my brain and several of them... there is no way to be cleared of MS really. I have known and so have most people close to me... that I have something wrong with my immune system. So this really isn't a huge surprise to me as I have been experiencing more and more problems with my nervous system and immune system over the past few years. Anyway all that to say that on Monday I had a spinal tap. And really, it wasn't too bad. I saw a very talented and amazing Dr. in Peoria who performed the procedure. He was beyond sweet and caring and talked me through the whole thing. The tech I had was also amazing (my MS dr is in Peoria... which is why the spinal tap was there). I had only heard nightmare stories about Spinal Tap and well I didn't have a nightmare story. I layed flat on my stomach on a table and the dr used xray imaging to mark exactly where he needed to go in. Then he numbed through my back and muscles and then put the needle in to my back. I didn't feel it until it was next to my spine but it was really only kind of a pinching sensation. He moved the table to get me at the best angle so he could retrieve the fluid as quickly as possible. I layed on my back for 24 hrs so I didn't get a massive headache and was good to go by yesterday. My back is a bit sore but it is kind of muscular, like I worked out too much or something. WAY scarier to think about than experience for me. Anyway all that to say that I have to wait 2 weeks for the results to come in. I will either get a confirmed diagnosis or still be in limbo land trying to figure out what is going on with my body. Limbo land sucks by the way. Not a fan of it.

Slobber Rocket is also in limbo land with his hormone stuff. He had blood work done in Feb and it showed that his IGF-1 levels are very low. So we know that something is going on with his hormones but not a diagnosis for him yet. He goes back to see his endocrinologist in Oct (on halloween!) and will have more measurements taken and more bloodwork drawn. Then we will schedule him for what is called a Stim test where they will give him medication to stimulate growth hormone in his body and draw blood several times over the course of 5 hours. Dr. V said that most likely he will start some sort of treatment shortly after his 3rd birthday. Not sure if it will be for IGF deficiency or Growth Hormone Deficiency yet though. Hormones are very complicated. All kids with GHD have secondary IGF deficiency but kids can have primary IGF deficiency and no growth hormone deficiency. IF he has growth hormone deficiency he will have an MRI to make sure his pituitary gland is okay as well. The good/amazing news about hormone issues is that they are very treatable and we can get him treatment to help his body grow to be healthy (including his organs which is my biggest concern). It is pretty fascinating stuff. Right now my boy is doing fabulously though. He is very healthy and smart and now that I have more of an idea of what is going on, I feel much more calm and confident about it all.

Super Muscles has a loose tooth :) Hes been wiggling it a lot. He thinks the tooth fairy should get him a 2 wheel bike for losing his tooth. I informed him that the tooth fairy was mom and dad and that we would give him a dollar for his tooth. lol. He said "no thank you" and I asked why and he said "because I want something COOL!" He makes me laugh often. Hes also kind of arrogant but don't tell him I said that. He was asking me today what the word panic means and I explained it to him and told him that it is better to stay calm and use your brain to solve a problem when one arises. He gave me an example of how his aunt used her brain to solve a problem with her tv (she had the cable guy come fix it). Then he said "My Aunt S is very smart but... I am much smarter". Oh my goodness! Where does he get this stuff from? He is a smart boy though, I will give him that.

Mr. Wonderful is busy being awesome. He got a very prestigious fellowship from NASA to fund his last year in grad school, went to Spain to present some of his research, has had several papers published lately and just got priority A for some observation time on the Very Large Telescope. He is such a hard worker and I am very proud of his accomplishments. Oh and did you catch that it is his LAST year in grad school. This time next year he will be Dr. Mr. Wonderful! And we will be moving out of the midwest. To where, well... I have no idea yet. But we know that it will be an adventure and we are all for adventures.

I am still struggling working through some family relationships. Learning a lot in therapy and through prayer and talking to trusted friends. Sometimes it feels very overwhelming but I know its what is best for me. I have also been doing a lot of fundraising for our trip to Ghana in November and loving every minute. Still in PT twice a week for my knee. Start jogging next week! Praying that I can convince my dr to let me play fall ball but I seriously doubt it. He said no sports for a YEAR. Blargh. I am also trying hard to work on being a more open friend and letting people into my inner circle. Apparently I suck at that ;) I feel like I am getting better. I have made one pretty good friend over the last year (like in real life, that I hang out with) which is a pretty massive improvement for me. This whole learning how to trust people thing is really not easy. I try to remember what my friend L has told me many times... "it took you 24 years to learn these behaviors, its going to take a long time to unlearn them" and then I just keep trying to slowly work on them. Setting boundaries with my family is getting easier but resistance is getting greater. Thankfully I have friends to run my thoughts by first who can tell me if what I think is going to hurt my progress in the long run. Left to my own thoughts I make poor choices with them too often. Amanda, Lora and JD have been absolutely invaluable to me as I work through all of this.  Thanks ladies.

Well I think that is enough of an update for tonight. I am getting a bit blurry eyed. I drove to Indiana to get my big boy today and we had great conversations in the car on the way home but being in the car for several hours made me super sleepy.

Wednesday, June 22, 2011

Conviction and Heartbreak

Conviction is a tough pill to swallow. Today I turned on the radio twice to the bridge of Sidewalk Prophets song "you love me anyway".

I am the thorn in your crown, but you love me anyway. 
I am the sweat from your brow, but you love me anyway. 
I am the nail in your wrist, but you love me anyway. 
I am Judas' kiss, but you love me anyway.

See now, I am the man who yelled out from the crowd
For Your blood to be spilled on this earth shaking
Yes then, I turned away with a smile on my face
With this sin in my heart tried to bury Your grace
And then alone in the night, I still called out for You
So ashamed of my life, my life, my life

The conviction is maybe not where you would expect it to be. The conviction is about relationships I have with people. A particular person actually. If this is how God exhibited his love to us... I must find the conviction and compulsion to love like that. And I do have a compulsion to love many people to the best of my ability. But its there, the knowledge that there are a couple of people who I have not been able to love. Spite and anger covers them and covers me. And I am ashamed. I am sorry. 

But I had a friend tell me today that sometimes the best way you can love someone is to let them go. Sometimes staying there keeps the cycle going. Sometimes being there to prop them up pulls you down and hurts you instead of helping them. So I distanced myself from someone tonight. And I am very sad. I want to love this person and I want to treat them with respect and love. And I feel like right now this is the best way I can do that. But it hurts.

Thursday, May 19, 2011

Joy comes in the morning

For a while anyway. I have been so excited about my trip to Ghana that I have been pushing a lot of big things to the back burner. Unfortunately all those big things came out tonight as a long conversation with the hubs before bed and LOTS of tears. I am sad. I mean I am happy about many many things but I am also sad.

Right now, I can't stop thinking about my step dad. He is sitting in some prison in Indiana... I am not even sure where. I could find out if I tried hard enough but I haven't found the case on the interwebs or anything. But I am sad thinking about how lonely he must be. There is a difference between thinking someone did something wrong and are getting punished for those poor choices and feeling sad that a human being, and one that I care about even, is alone and has had all of his rights stripped from him. I think I did the right thing even though I feel a huge amount of sorrow and even guilt for setting it all in motion. Everyone seems to think I should be happy about this too... but I am just sad and feel like its my fault. And it is my fault to a large extend and I need to be okay with it.

The deal is, he did something horrible. He violated the trust of 2 children. He violated 2 children. One of those children was me. And when he was left alone with my son and nephew, I freaked and ran as hard as I could to find a counselor who would help me figure it all out and tell my family because I could not take the anxiety attacks and guilt and sheer feeling of absolute failure at keeping my son safe. He is okay by the way... it was literally a car ride alone with him from point A to point B. But still... it was enough to scare the crap out of me. I couldn't let that happen to my kids or any kids that I love. I just had no other option and I had to do what I felt was right. I had no way of knowing it would turn into this. I wasn't ever going to press charges... and I didn't. I just wanted him away from my kids and my nieces and nephews. That is all. Its a bit messy because going into the rest of it gives personal details about people I have no right to give personal details about. But the point is this is not at all how I expected it to end.

I never expected to be sitting down writing a blog thinking about how my dad was going to spend the next (at least) 8.5 years in prison. I never expected to feel so confused about it. I never expected so many people to tell me how to feel about it.

I never thought I would have next to no relationship with my mom at this point in my life. And it isn't personal. It is just what I need right now. And some days I feel literally choked by the anger that surrounds our relationship. My anger mostly. How do I let go of it? I am working on it with D (my therapist) and I have come a long way but people are getting really impatient with me. Frustrated that I am not moving toward reconciliation fast enough. But I have to take care of my own emotional wounds and needs and those of my families first. Raw wounds are ugly and I don't want any ugly relationships anymore. I just don't.

Never thought I would be recovering from my 2nd acl repair or have allergies to the extent that I have them or be in the process of being diagnosed with a chronic illness. Never imagined I would see 4 specialists about my ears and still have no real answers on how to help them.

But I also never known Redemption like I have seen in the last year. I never thought that I would be able to get to the point of trusting someone to help me with my past and work through it. I never thought I would have the strength to go through all that has transpired in the past 6 months. I never would have imagined preparing myself for going to Ghana. I wouldn't have known that with all the health problems I have, that I would have the energy to fund raise and network like I have. Sure sometimes I do it while laying on my bed so tired I can't think straight and with numb hands but I always have the ability to keep going. I never knew I would see a few relationships get stronger than they had ever been or that I would meet my bio dad and form some kind of... friendship... with him. Or that as terrified as I was to send Super Muscles to preschool that we would both absolutely love the experience more than I can express. And the biggest thing I would have never guessed... was that I would be sitting in my living room right now, feeling so much compassion for a man who hurt me so much. Never in a million years would I have guessed that. And I know that if I can feel compassion for him, I can find that for my mom. It is inside me somewhere and I am trying so hard to find it but I am encouraged by how things have changed so far.

That is the remarkable thing about it all. I have been closing my eyes and hanging on to Jesus for dear life. More than I ever have... and you know what? The miracle is that he has given me enough excitement to drown out a lot of the sadness. It still creeps in and I still see my therapist every week and have PT 3 times a week and drs appointments. And even emotional break downs when I get overwhelmed. But it's good. Life is good and I am happy because I have seen so much redemption and healing in my life. And I know that I know that I am not alone in all of this. It is an amazing feeling. Tonight I weep... but joy comes in the morning.

Monday, May 2, 2011

While the nation celebrates

While our nation celebrates, I am sitting at home feeling incredibly sad. I wish I could really explain what is in my heart but I have already been terribly misunderstood so I doubt seriously that it is possible. Why are we celebrating the death of a human being? Why are we in the streets cheering that someone's dad, brother, child, grandfather... whatever, was shot dead in a war? My heart is sad to see this. I feel nauseous every single time I see someone cheering in the streets or a new facebook update about how justice was served.

Justice was not served! Justice will never be served. There is no way to bring back innocent people. And this doesn't stop the war. It doesn't bring back our men and women from Afghanistan. I would be totally surprised if we didn't just piss off a bunch of crazy terrorists. What justice is that? Putting more of our soldiers in danger is not justice.

I know people who were in NYC and in Washington DC and who have fought in Iraq and Afghanistan. People that I dearly love have suffered far greater than any person ought to suffer in life. My brothers have seen things no one should ever see. Innocence has been killed trying to get at this man for the past 10 years in the form of young men and women serving this country and children and women being in the wrong place at the wrong time. War is not justice. Death is not justice. Peace is the only thing I can think of that approaches justice for the lives lost.

I will never forget how my stomach sank and my body filled with nauseousness as I saw people cheering in the streets near the White House just like I will never forget watching the 2nd plane fly into the tower and the towers collapse with thousands of people inside. Nothing will change those feelings or the consequences. We didn't just make the world safer, we made the world angrier and more uncertain. And I just don't feel like that is celebratory.

I echo everyone's sentiments toward our troops though. They are who put their lives on the line for us everyday. They are brave men and women dedicated to protecting our country. And I am extremely thankful and proud of them. Every.single.day.

So, I think this is worthy of feeling. It is monumental. It is history altering. It is something I will always remember. Where I was when waiting for Obama to address the nation that Osama bin Laden was dead. But I won't remember it like so many people probably will. War is not justice. And I am pretty sure that is one conviction I will always have. I have seen what war does to people. I have brothers very affected by war. It is not Justice.