Monday, May 24, 2010

Anger, Envy and Fear

Those are some hard feelings to have – anger, envy and fear. As Christians we are supposed to strive to push these thoughts and feelings from our hearts and minds. That’s such a difficult task isn’t it? It is much easier to point to others and see these things in other people. It hurts too much to see these feelings manifested in our own day to day lives. However, I believe that is one of the reasons it has taken me so long to tackle this entry. I believe God wanted me meditating on these thoughts deeply before I wrote something that might otherwise come out as merely hollow words. I believe God wants me to share my recent experiences and emotions openly and honestly and He wants me to do so in order for His lessons for me to hit home. I may write things that touch other people, but God really uses my writing to make me aware of what He wants me to learn. He always seems to reach me and teach me when I write.

Anger is something we must give over to God. It is such an ugly emotion and it will easily consume you, your thoughts and your life if you allow it. I’ve been angry about a lot of things. First thing is one that is easy to point to – a medical mix-up. Doctors, nurses, etc. are only human and therefore mistakes happen all the time. Unfortunately, this mistake was that he Heparin (my blood thinner medication) sent to me with my home health care supplies was only about 1/1,000th of the amount that I should have been getting. Another bad thing is that I was the one who had to catch the error. In my doctor’s and nurse’s defense my case is extremely difficult and I am on so many medications (IVs and orals) that it would have been a miracle had something not fallen through the cracks. I wish I had checked earlier but I ended up going for almost a month without any therapeutic levels of Heparin. I was having trouble thinking, was exhausted, felt faint, had a few seizures, couldn’t get on the computer, etc. Basically I was feeling close to how I felt before I even went to Kansas City. I knew I was feeling worse but did not know why and figured it was just the stress of handling all of the changes in handling my own IV care. When God led me to really look at the amount of Heparin I was getting versus the amount I had been getting, well, I was REALLY angry. I had basically been pushing IV antibiotics into my heart while my blood was getting thicker from the lack of Heparin. This was a big “ball to drop” and I was so very angry about it. It took days for me to calm down and I still have to ask God to take the anger from me daily. I wondered how I was supposed to keep an eye on every single thing when I’m the sick person and when I’m on so many drugs that alter the brain. I have been on the therapeutic levels of Heparin now for 4 days and can see a huge improvement in my symptoms and I thank God for making me double check the dosage amounts. But I’m also angry about the situation I am in because I have no idea of how long this will take or even what my own version of “healthy” will be. I am angry about how much I endure and how it seems to be never ending. I stop myself often and think about the countless others who have it so much worse than me and I wonder how on earth they handle their continuing battles. Friedrich Nietzsche wrote, “It is not so much the suffering as the senselessness of it that is unendurable.” That says a bit about how I feel, although I know deep down that the suffering I’m enduring is the fire that God is using to melt me into the person He plans for me to become. But, at times I do think the suffering would be durable if I knew when it would come to an end. God doesn’t give me a time table though.

Anger has been with me but so has envy. I’ve found myself so very envious of other people’s lives. Ah, yes, the old familiar pity party. Honestly though, I had to get off of facebook because I was so jealous reading about everyone else’s lives. Even the things they would post and/or complain about like having to be at the ballpark for 6 hours on a Saturday because they have 2 kids playing ball would make me mad. Reading complaints about having to go to the grocery store or having to clean house would cause me to get upset. I wasn’t upset because these people didn’t have the right to “complain” about their busy schedules or their chores or errands. I was upset because I would think, “I would give anything to have the strength to clean my house right now!” and of course that nagging feeling of, “I wish I had children and had to spend a Saturday at the ballpark watching them and feeling proud.” Envy does not suit me. It is an emotion I am supposed to push out of my mind yet I found it resurfacing time and time again. I know that being a mother is the most exhausting job in the world. I know that working mothers have it really hard because I cannot fathom having the energy to work or have children so I really cannot imagine how so many of my friends do both! I love the fact that my friends are busy with their families and their lives, but the envy I was feeling made being stuck in this bed that much harder. God has been working in me and convincing me to give up those feelings along with the anger. Envy and anger go hand in hand. When you’re envious you end up being angry about everything you don’t have that others do have. I was envying other people’s lives and questioning why I was stuck in this one. I know everyone has their own burdens but I was in a selfish mode and wondered why it seemed some things came so easily for others while I couldn’t even start a family. I was angry about the IV pole sitting by my bed and the oxygen mask around my face. I was getting impatient with all of this and I was angry with God about it. I told Him how I felt and He started to work on me then wrenching away all those unwanted emotions from my mind. He’s still working and I’m still praying that those negative feelings of anger and envy find no place to live in me.

Finally there’s the fear that goes with all of this. Fear is honestly the root cause of most all other emotions. Anger is just simply fear with an attitude. It’s a way to cover up the weakness you feel when fear resides in your mind. No one wants to feel weak and people tend to see fear as a weakness so they turn it into anger. Envy is simply the fear that you don’t measure up, or that you are scared you’ll never get the true desires of your heart – in my case that would be being healthy and having children. Fear is always at the heart of anger and envy. So, in order to get rid of those two you have to figure out what your real fear is and face it head on. My fears seem to range from something as simple as fear of having another seizure to bigger fears like will I ever have a healthy life and if so, WHEN? Fear is like a cancerous tumor that can grow so fast if you don’t actively remove it from your mind and heart. Fear is the devil’s most used tool I believe. How much does he love to make us question, doubt and become fearful? Those fears often lead to our doubting God, or at least that’s where they lead me. I get angry and I start to doubt that God is going to do great things in my life or I doubt God’s will for my life. I sometimes just wonder what God’s plan for life is and get worried that it’s far from the life I had pictured for myself.

I’m working on all of these things and I pray that God continues to shine a light on what I should be focusing and turns my mind to those things when my mind really wants to throw a pity party. Jurgen Moltmann wrote, “God weeps with us so that we may one day laugh with Him.” I know God counts my every tear and disappointment. He knows what I’m feeling and thinking long before I myself am consciously aware of those things. He is not taking me through this journey without a reason. He is working on me and I have to force myself everyday to become more like clay in His hands than a stone that refuses to bend.

Finally, I think a lot of these unwanted negative feelings have come from being home and missing out of being able to socialize at all. In Kansas City I did have my sweet treatment friends and my sweet nurses who were my social outlet. For now I am stuck in this house and due to the seizures I can’t have visitors. So there’s that solitude again. I know God’s plan for my life is far better than the one I had planned out for myself – it’s just a different journey with an emphasis on different things. Mine is not the “normal life” I wanted. For now it is the difficult life I currently live. But I know one day I will look back on this time and see it as what ultimately defined my life. I have no assurances that I will have an easy life on this earth. God does not promise us an easy life here but He does promise to be with us every step of the way. L. B. Cowman wrote, “Do not be afraid to enter the cloud that is settling down on your life. God is in it. The other side is radiant with His glory.” Again, no fear…with God I need not fear anything because He is always with me.

“The joy of the Lord is your strength.” Nehemiah 8:10 (KJV)

I thought I would share the following because it spoke so much to me when I read it in one of my devotional books:

“Trust Him when dark doubts assail thee
Trust Him when they strength is so small,
Trust Him when to simply trust Him
Seems the hardest thing of all.

Trust Him, He is ever faithful;
Trust Him, for His will is best;
Trust Him, for the heart of Jesus,
Is the only place of rest.”
Finally, I’ll end with this wonderful verse:

“And the Lord God will wipe away tears from all faces.” Isaiah 25:8 (KJV)

He’s already wiping some of mine. Much love to all of you!
K

Tuesday, May 18, 2010

Just a medical update

God's been working in my brain to write a new blog entry but it just isn't ready yet. I'm still listening to Him for whatever message He wants me to convey. However, for those who have been wondering how I've been doing I thought I'd just give a medical update. I have also taken a "computer break" from facebook, the blog, etc. hoping it would help keep the seizures at bay. So, I know I have quite a few friends and family who are wondering how I've been. So, here's an update for you.

First, the IV treatments at home are better as far as having more control over my environment so it's quieter. However, they are still IV treatments and therefore, they are still so hard on me physically and mentally. I'm still running fever everyday starting out with a temperature of around 97 when I first wake up and after 2 hours of cold fluid being pumped through my veins it still goes up to 99 degrees by 11:00 a.m. It continues to go up even during my afternoon treatments. I'm usually about 101 degrees by 6:00 or 7:00 p.m. and it's not going below 100 degrees until after 11:00 p.m. or so.

The fevers make my sound sensitivity much worse and so I have had a few seizures since I've been home. The last was yesterday when a guy from the company who handles my oxygen machine came by. Right now I'm having to use a machine that basically takes the surrounding air in and somehow makes that air more oxygen concentrated. It's a help, but it doesn't hold a candle to the liquid oxygen machine I had in Kansas City. We have a prescription for liquid oxygen but my oxygen levels haven't been able to be monitored during a seizure. I have levels showing I go into the low 90s during sleep when my brain tells me to quit breathing, but no one seems to understand that the seizures I have are due to a lack of oxygen to my brain. The company is trying their best to get the liquid oxygen machine to me, but the FDA regulates those like they were some type of weapon! Anyway, they guy was there to deliver a monitor that would record my oxygen levels while I sleep. We explained the situation and he was intrested to know that we weren't trying to get liquid oxygen for my sleep, but for seizures. He said he would look into everything and try to see what he could do to help.

Bad thing was that when he arrived M & I were not expecting anyone and the doorbell rang at 3:30 (during my afternoon treatment which is my worst time of day). Of course my little toy poodle had to sound off his barking alarm and it was hard for me to handle. After the initial shock I thought I could still talk to the guy to explain all of the issues. As I was telling him how it was impossible for me to predict when a seizure was coming and that even if I could there was no way I could keep a pulse oxymeter on during a seizure since they are little gadgets that go on your fingertip and measure oxygen levels. When you are having a grand mal seizure it's impossible to keep something on your fingertip.

What happened next is what my husband thinks may have been "a God thing" because while the guy was telling us that he would do all he could to help us get the liquid oxygen, I ended up looking at M and stuttering, "Aaattttivan" because I knew I was about to seize. I fell off the couch and M came running with the Ativan that melts in my mouth. All of this, the whole grand mal seizure, took place right in front of this poor guy from the oxygen company. M figures maybe God allowed me to seize right then because when someone sees it happen they are much more likely to advocate me getting the liquid oxygen. We'll see what happens. For now I am wearing a figertip pulse oxymeter (taped to my finger) while I sleep for 2 nights to see what happens with my oxygen. The two night study requires me to sleep without the concentrated oxygen machine which means little to no sleep for me. That isn't good since I have a doctor's appointment tomorrow at 12:30 and don't want to have a seizure from going out in public and lack of sleep can definitely increase the chance of me seizing. M and I decided I would skip treatment this afternoon and that tomorrow morning just do a bag of fluids with no antibiotics to try and help me handle the whole ordeal of going to the doctor's office.

All in all I am very glad to be home but it does hurt my heart not to be able to see anyone. I just cannot risk the chance of seizing. Today my body is killing me from all the jerking, falling on the floor, hitting my hand on the hardwood floors, etc. Please pray that we will somehow get that liquid oxygen machine soon because I need it desperately. There is such a huge difference in how I feel on liquid oxygen compared to this machine. Also pray that I do not end up having a seizure from all the stress of getting to and seeing the doctor tomorrow. I know God never gives me more than I can handle and I've been able to handle all of this with His help. I know God will always go before me and make a way for me to follow the path He guides me down. But, I also know that God wants us to pray for one another and that He hears all of our prayers. So, I ask that you pray about my situation. I ask that you pray for M too as he has been through so much already and needs to be able to work from home without having to come upstairs and check on me (or call me on my cell phone from downstairs to check - haha). We do need prayers. We are out of K.C. and that is an answer to prayer, but we are far from being "out of the woods" so to speak.

I appreciate and love each and every one of you who take the time to read this and who are always praying for me as I continue down this difficult road to wellness.

Oh - again my daily calendar seems to give me passages that fit for each day! When we were praying about what to do about getting the liquid oxygen last week I read that day's verse:

"O Lord, there is no difference for you between helping the mighty and the weak. Help us, O Lord our God, for we rely on you." 2 Chronicles 14:11 (NRSV)

Then yesterday when I had the seizure the verse was:

"He knows the ways that I take; when he has tested me, I shall come out like gold." Job 23:10 (NRSV) - I find the book of Job, the whole story of Job, to be quite comforting as I go through all of this.

And tomorrow's verse as I try my best to handle making it to the doctor's office is:

"Without God it is utterly impossible. But with God everything is possible." Mark 10:27 (TLB)

Much love -
K

Friday, May 7, 2010

Solitude and Serenity

In my last post I groaned and complained a lot. I guess I wanted to come home and see that being away from the stress of the clinic, being in my own house, would allow me to stop seizing. I wanted to be able to see people and visit with friends and family. But the truth is that I simply cannot do that. It's hard to explain this to people and for them to understand. If I wasn't living it I wouldn't understand it either.

I was complaining a lot about feeling so isolated and alone. I still miss my treatment friends and my nurses. That was where I could socialize a little at least. However, I can't do it here. The stress of treatments and the treatments themselves make everything difficult. I get frustrated with things and my brain gets overwhelmed so easily. Tuesday was extremely stressful as the nurse came to attend to my PICC line dressing and to draw my blood. For some reason my body goes through a lot of stress on blood draw days. Also, this was a different nurse so I was worried about meeting another new person. By that night I had a meltdown and was about to go into a seizure. M got me an Ativan to melt in my mouth and the tremors subsided. But it made me feel so very alone. The idea that I cannot handle the stress of seemingly easy things upsets me. Then yesterday I got excited about a delivery - it was a ring that my parents and my sister and her family got me for my birthday. I got it while I was in Kansas City, but it was the wrong size so I had to send it back and wait on the new size to come. I was so happy to get it yesterday. Then there were a couple of deliveries pertaining to M's business and my little poodle had to bark to let us know someone was coming to the door. When I don't expect his bark it really startles me. By the time treatment started my temp was 100.8 and I was a wreck. Then M knocked over a picture frame and the noise of it hitting the hardwoods was like the straw on the camel's back. Again, with the help of Ativan I only had a "partial seizure". I told M through my tears that this was "no life" - it's living in total isolation while wanting so badly to see people. Just being happy and excited makes me seize and I questioned what kind of life that was. It upset me to realize that I can't even get happy or excited anymore because I can seize. Even happy things or happy times can be stressors and trigger the seizures.

I was mad. I was upset. I was thankful to be home, but wondered why God would give me in the instruction to go home when I couldn't do anything I wanted to do. I knew I needed to focus on something spiritual to get rid of that anger. I got my book "100 Days In The Secret Place" and randomly opened it to a page. I've quoted from that book before, but God laid it on my heart to just open it and He led me to read about how this isolation can be so very positive. I will share a large part of what I read that touched my heart so much:

"There are two ways for the soul to be cleansed. The first is through affliction, anguish, distress and inward torment. The second is through the fire of a burning love, a love impatient and hungry. It is true that sometimes the Lord uses both of these ways to deal with our souls. All revelation and insight into God, all true experiential knowledge of God, arises from suffering, which is the truest proof of love.

Oh, how I hope and wish for you that you can understand the great good that comes from tribulation. Tribulation cleanses the soul. The cleansing of the soul through tribulation is what produces patience.

Within tribulation can come inflamed prayer. In the midst of tribulation we can exercise the most sublime acts of love and charity. To rejoice in the midst of tribulation brings us near to God. It is tribulation that annihilates and refines. It is that which takes the earthen and transforms it to the heavenly. Out of the human it brings for the divine...transforming one and bringing it to the other, uniting them with the Lord.....

(Cont.) There are two kinds of solitude. There is an outward solitude when one simply does not speak, or speaks little. There is also an inner solitude. Inner solitude means forgetting about everything around you, being detached from it, surrendering all purpose and desire and thought and will, and then coming before the Lord. This is true solitude. You will find it to be a sweet rest and an inward serenity...found in the arms of your Lord. For that believer who is able to stay in such a place before his Lord there will be a great number of discoveries.

For the believer who comes this far there is the discovery that the Lord converses and communicates with the believer in his inward parts. It is in that place the Lord fills the believer with Himself...but fills him only because that person is empty; He clothes him with light and with love because he is naked, lifts him up because he is lowly, and unites him with God and transforms him, because he is alone.


I see this solitude with God as a figure of eternal bliss - a picture of that further time when the eternal Father will be forever beheld." - Michael Molinos written in the 1600s.

So I thought about this isolation and realized that it is a time of solitude and that God planned it that way. When I try to do what I WANT TO DO, He has a way of literally shaking me right out of it and putting me back to solitude. He is working on me so much - and I have a lot to work on, believe me. However, reading that and realizing that most people never get this kind of solitude made me realize how much God is trying to reach me. I trust He has plans for my life that include wonderful things but I'm in a temporary fire. I am being melted down and reformed into what He wants me to be before He sends me to the next part of my life. I read so much more from that book and at times would read and then lay the book on my chest and just rest in God's presence. I would close my eyes and thank God for the prayers He has answered for me. I realized how "human" I've become with my pity party about not being able to see people. That is a temporary thing. I will get back to a normal life later but even then I will have to continue to turn towards God every day and instead of being the "old me", I will be whatever God has in mind for me to become. So, yes, I'm wearing an oxygen mask all the time, and yes I am still dealing with hard IV treatments, and yes I get frustrated with how slow my progress is. Those are natural human emotions. However, they are not what God wants me to feel. He wants me to see the many improvements He has given me and the many, many prayers He has answered. He wants me to focus on my daily life - not worry about tomorrow - just focus on Him every day so that I give my burdens over to Him daily. He has let me know this is temporary, but He also lets me know that temporary doesn't mean my understanding of that word - it means HIS understanding of that word - HIS understanding of time - and I know that HIS timing is always perfect.

I know this was a long one. But, I felt that others might read those same passages I read and feel a peace resting in their soul. I know it changed my outlook a lot. God is always present. He is always near. We only have to turn inward, seek Him in the Holy Spirit He granted us with, and be silent. Solitude and serenity actually go hand in hand. I will be very happy when I get to visit with friends and family, but for now I will seek the serenity of solitude and see how I can learn in this time how to be more loving and more patient and seek God's will for me. Instead of complaining about what I can't do, I will turn to God and see all that He CAN do. He can do so much if we only give control of our lives to Him. It's a hard thing to do, I'm still working on it and will probably continue to work on it daily until my last days because it is so different from what our human brains want to do. I pray that God teaches me many things through this solitude and that I accept the serenity that comes from merely being alone with God, soaking in His divine love.

Yesterday and today my daily calendar once again has good verses that go along with what God is telling me. Yesterday's verse:

"God is the strength of my heart and my portion forever." Psalm 73:26 (NIV)

Today's verse:

"Seek first his kingdom and his righteousness, and all these things will be given to you as well." Matthew 6:33 (NIV)

Much love-
K

Wednesday, May 5, 2010

New routines

I haven't forgotten to write in this blog. I've simply been too overwhelmed with all of the changes going on in my day to day life. I've been waiting to hear God tell me when I need to write something else about what I'm going through. However, since it has been so long, I wanted to give you all an update.

I am home and the two day drive took its' toll. My husband rented a minivan that the middle seats could fold down into the floorboard and the big back seat was where I made my "nest". I had two twin memory foam pads, blankets, my eye mask, and most importantly we drugged me to the hilt to keep my central nervous system from going haywire. We broke it into 6 hours of driving one day and 6 hours the next day. I was exhausted and believe me, not one single suitcase or box has been completely unpacked.

We saw the doctor here and I came very close to having a seizure in his office. The noise of people walking down the halls of the hospital, the ding of the elevators, the flourescent lighting added to the stress of my first meeting with this doctor - well, by the time he came in I was a wreck! Thank the good Lord above that I took my Ativan with me so while I had a lot of shaking and tremors I did take the Ativan in time to stop a full on seizure. He has me on the same regimen as my Kansas City doctor - IVs twice daily, prescriptions, etc. He said I was a "very difficult case" and that we would need to come back this Friday for a real exam. I was shaking too much for him to be able to do anything but check my blood pressure and listen to my heart.

IV home care is good for me because I'm not dealing with the noises of the clinic, but I'm having to get used to the new equipment, bags, etc. that this company has. I have a nurse come once a week to take my blood and do a dressing change for my PICC line. The stress is still there though because running your own bag, wrapping up your PICC line, remembering everything I have to do while on IV Benadryl is all overwhelming. M and I are trying so very hard to adjust but neither of us deal well with change. He's used to being here and working in his downstairs office all the time. Now he has to check on my, feed me, sometimes help me with IVs, etc. I feel like screaming when I think of all he has to do for me! I'm still battling seizures in the afternoon as my temperature will go up to 101 and that makes everything worse.

Good news is that I am HOME - I am FINALLY HOME! Even though no one can come see me because when I get excited I may be fine in the moment but will often seize a few hours later. That's the hardest part of being home - I want to see my family and friends, but I just can't do it right now. God is still working on me and my control issues, my handing over my fears and stress to Him, and He tries to get me to focus on Him - but I sometimes forget. When I look away from God I get angry about this life. I"m writing this with my oxygen mask on and staring at an empty IV bag from this morning. It's hard - it's not something I can just jump into, but I know God will provide for me and never give me more that I can handle!

Now I'm off to nap - here's my daily verse. One of my favorites that I know I've used before but it seems quite fitting for the day I'm having:

"Blessed be the Lord, who has given rest to his people." 1 Kings 8:56 (NRSV)

Much love to you all-
K