So I survived, now what?

So, I survived my kidney biopsy. Now I was wondering what was next. I wondered what the doctors had planned for me. But more importantly, what did God have planned? I was quickly realizing, at this point, that most trials came with lessons. In one way that scared me. But it also gave me peace at the same time, if that’s possible. I thought, I really don’t want to go through anything else that would cause me pain, anxiety or really, anything hard! I was just done. But it also gave me peace because I was reminded that when I go through trials God is walking with me and that He has proven to me, time and time again, that in any trial of mine, He was in control. What is interesting is that I knew, that God knew, that I needed a break right then. Because while I was still anxious, depressed and pretty paranoid about everything, nothing extra was added to my plate for a little while. The doctors let me start coming in once a month after 4 months and I only had to do bloodwork every other week. This seemed like a vacation, not having to go to the doctors or the lab so often. It felt like progress. A feeling that was much much needed right then. And, of course, God was fully aware of that need. So I would say there was maybe one or two months when nothing dramatic really happened. I went to all my doctor appointments. I did all my bloodwork as they asked me to. I still struggled with my eating and anxiety etc. Then all of a sudden another major side affect of my medicines became worse. It was, and still is, something I struggle with every day. I started with horrible tremors. My right hand would at times just shake uncontrollably. This again is not something everyone gets, but I was blessed with another side affect. It is worse some days than others. But little things I never thought about before became a real challenge. Something as simple as getting food on a fork or spoon from the plate to my mouth. Or writing my name legibly. Things I never imagined I would have trouble doing. At least not at age 57. This caused my anxiety and depression to worsen. I remember the first time Marv took me to a restaurant where I was trying to put drink from the machine in my cup. I couldn’t hardly get it in the cup because of shaking so badly. This of course was embarrassing, but I’m thankful I was able to think about how funny this must look to others that I was able to laugh at myself! However, when I went to my general doctor, he wanted me to see a doctor who specializes in Parkinson’s disease. And this was the not so funny reality, my Dad had Parkinsons and one of my brothers currently has it. So, it seemed like a possibility. Not one I wanted to think about, but a reality  I couldn’t deny.  The problem is there is no definite test for this disease, and the side affects of my medicines are almost exactly the signs of Parkinson’s. So I prayed about it. I didn’t want to go to more doctors and through more tests when they really couldn’t definitively tell me if it was the disease or the side affects. And I certainly didn’t want to be put on more medicines because of a guess that it was the disease. After much anxiety and prayer, I felt a peace with assuming it is the side affects of my medicines. I don’t really know how to explain it other than I had peace that once again God’s got this. Just as He has before, many many times. And if it should end up being Parkinsons, God will also carry me through that as well. I think this was possibly the first real peace that I felt after my transplant, which was so interesting to me. Why, at the possibility of a life long, not fun, illness was I at peace? Because I was finally fully realizing that I was not in control, God was! And handing that control over to Him gave me immense peace. So in the midst of yet another thing to face, God reminded me of His incredible love for me. The question was, how many times would He have to keep reminding me?...

How Long Can This Go On?

     Three months after my transplant the doctor insisted on doing a kidney biopsy. They wanted to have a starting point of how my new kidney was functioning, so if I had issues,  they would have a base to refer to. I was extremely concerned about doing this. I’m not sure why, but it just didn’t sound like something I wanted to do! Putting a needle in and taking a small amount of my new kidney that was doing well seemed like a bad idea. I had worked myself up to the point I was so scared.  I didn’t want to  “poke the bear”. Marv had to work the day of my biopsy, so a dear friend of mine took me to the Cleveland clinic. It was supposed to be maybe a couple of hours. He would do the procedure and then a bit in recovery. Just local anesthesia. Well, two hours turned into an entire day. The procedure supposedly went well. But I got so sick. I was throwing up, and I had to pee before I left. And when I could pee, it hurt and there was a lot of blood. Way more than there should be. At that moment I felt like I had taken two HUGE steps back. This was actually harder for me than the surgery. I can’t remember when I was ever that sick. I knew they had their reason for doing this procedure. But it was kind of hard to understand what it was right then. I remember feeling, “ how long can this go on?”  I think it was potentially the longest day of my life. I finally peed enough they let me go home. But there was still blood in my urine. And being in my extremely paranoid stage yet about this whole kidney thing, I went home feeling horrible. Imagining they messed with my new kidney!! Why did they do that? Did they maybe hurt it somehow?  I was not very happy. It took me a few days to recover from that “ simple” procedure. This did not help my anxiety I was feeling from my meds. At that point I really felt my whole world had been turned upside down. And I was never going to be able to get my life back. What were they going to do to me next? I can’t say I had the best attitude at that time of my life. I tried to turn to God, but I was just feeling way too messed up to believe He hadn't just decided I was too over the edge to care about me anymore. It was like my heart knew better, but my body and my head kept telling me differently. It was an extremely trying time for me. Looking back, I now know God never left me or gave up on me. But He sat patiently, watching over me, making sure I was ultimately ok, while I figured out how to come back to Him. I wish I could say this is the only time in my life God had to be patient with me while I found the path back into His arms. But, it was not. As I think about how many times He has patiently watched over me, and let me make the choice to fully turn to Him, it makes me so grateful for the God we have. Then I thought about those words I muttered, “how long can this go on?”, I had to wonder how many times God has had to look at me and say, how long is this going to go on? How long until she fully believes that I am here. I haven’t left her. I am watching over her. It’s not Me (God) who needs to change. I always have been, still am, and always will be the same everlasting God. It is her that needs to have faith and believe that about me. That’s when it really hit me. I needed to look in the mirror and decide how I was going to change. And there have been other times since then in different situations that God has had to be patient with me. But I can say, deep in my heart, I know with confidence God will never leave me. He just gave us that free will to choose Him. Choose faith. Choose joy. It’s not always easy, but I’m working on it. And thank God He is committed to being in it with me for the long haul. He will never leave me.I was looking at this beautiful picture of a spider web my husband took, and I felt this is what my life must look like to God. I go back and forth in all different directions in this intricate life He has given me. But God is in the middle of my “web” holding it all together. And the world can come around and tear my “ web” down, but God is right there to help me build it up again. May I always remember this image. To God be the Glory! 😊

What constitutes a great day?

    So here I am feeling like a lab rat. Believing all these drugs in my system are going to kill me rather then save my life! What is a person supposed to do with that? I thought, this must be how a hamster in a cage feels. You just keep going around and around and you never get anywhere. Going from a busy, business owner to a blob was just more than I could fathom. How could this be my life now? Then my brother, Stan would show up with a case of Dasani water , which was the only one I felt comfortable drinking for quite awhile. Or my sister, Diane would stop and help me with my pills. Or my brother, Larry or my brother in law, Ron would show up with the special fudgesicles I loved.  Or my sister in laws. Janice, Mary and JoAnne would stop and talk and  help me figure out things. Or so many of my friends from church and elsewhere would stop by with a meal so I didn’t have to think about cooking. My kids would check on me as much as they could and well,  then there was God. God showed up many times in ways I didn’t even realize at the time. On a good day, when I sat and really thought about all the people who truly cared about me, I was so ashamed at how ungrateful I felt. But then perhaps the next day I couldn't feel that love again. It was definitely there, everybody did so much. It was never about what others were or weren’t doing for me. It was about how my brain was reacting to these high power drugs. And the fact that I couldn’t seem to control how I feel. I know that’s against what so many people will tell you. Exercise. Just go for a walk. Read. Find something to do to take your mind off of it. Like that would all magically make this messed up feeling go away. Often the only thing I could make myself do was sit and watch a movie so I didn’t have to think at all. When I read what I’m saying I even think, I was really messed up! But I also know I couldn’t help it either. It was a chemical imbalance, which is what full blown depressions often are. And no walk, no matter how long, was ever going to take that confusion away. I tried. Believe me. I even tried just saying I would do those things so people would think I was ok. But it didn't change the fact that I still felt numb. I couldn’t just magically say it was so and ta-da! I’m great again. No matter how much I wanted to be ok, I just couldn’t be the old me. I remember saying, it’s like I got a new personality with my new kidney. I was not anticipating that. Since I have been writing in FB and writing this blog, I have had various people reach out to me in different ways to tell me they also know what this feels like. Or to ask for prayer in their journey. And I feel God is  telling me to never minimize what people are going through. Because I also know, now, how it feels. I’m not writing this to make you feel sorry for what I went and continue to go through. I am simply writing to let others know that they are not alone in this and I understand. I have gotten medicine that helps with my medicine induced chemical imbalance ( which sounds so ironic) but there are still days I literally have to get up and CHOOSE joy. CHOOSE to be ok. And I know I am not alone. I am not glad there are others who have to go through this as well, but I am glad we can talk about it and help each other through it. This has become my new normal. I used to just be kind of care free and happy. I went from being outgoing and friendly to being a recluse. I still try not to take things too seriously. But I do struggle sometimes to find the bright sun in a cloudy day. So I am writing this to all of you who understand depression because you have been there. Not because you learned about it in a text book. But because you live it. I know we will all be just fine. How do I know this? Because God has shown me time and time again that if I just choose to be joyful, not because of my circumstances, but because of my faith in Him, that I can get through anything. May not always be easy, but He will walk through it with me if I just let Him! I think the hardest, but yet best part of the entire transplant was having to go through this. It made me rely on God instead of myself or those around me to make me happy. My joy can only come through my belief and faith in Him. I know this with all my heart. Do I still struggle? Yes I do... sometimes. But we all struggle sometimes with whatever pain is put in our path. The victory comes with how we choose to deal with it. Do we get down on ourselves because we can’t kick these horrible feelings? Do we become bitter because why should we have to go through this? Do we end up with hate in our hearts because we are so sensitive and someone can’t understand how I’m feeling? Or do we realize there is no way we can do this on our own. And we have to literally give it to God every day. Not just once and done. I know the only way I can deal with this anxiety in my life is to every morning give it to God. If I get too busy and don’t do this, I can count on having a struggle all day. So, why wouldn’t I just make sure I do this every morning? Well, I try to. But I’m human and sometimes I just mess up. But at least I try. And I think God is pleased that I am doing my best. He, above anyone else, understands.  And I know that depression because of loss can be even different to deal with and I don’t want to minimize this depression from grief. But I also know that God can understand any of our hurts. So, what constitutes a great day?  Whether you give that day to God.
Till next time... To God be the Glory!

What is happening to my emotions?

Have you ever felt like someone put you in a washing machine and you are being tossed about? You are tumbling around, understanding you are being “cleaned”, but feeling so confused, not knowing which end is up in the process? I think that is how I felt when I got home from the hospital after my transplant. My emotions went from excitement of going home, to oh my, what just happened? I remember walking through the door at home and going from  oh good ... I’m home, to, oh no, I’m home! As I said before, leaving the hospital was such an up and down feeling for me. I really wanted to get out, but once I had my freedom, I also realized I had no nurses to make sure everything was ok. No one to make sure I was taking my pills correctly. What if I suddenly started rejecting my kidney? Would I be smart enough to recognize it in time? I remember after having our first child I went through a bit of the same thing. Coming home and there were no more nurses there to help when she cried. Marv and I were responsible for this little human who invaded our existence. But with that also came so much love that my motherly instincts kicked in. And while I was grateful for this kidney, I think I was struggling finding love for this new thing that had invaded my existence. I think it was different for me than some others. I was close to dialysis, but got a transplant right before I had to start it  That was what I prayed for, I was afraid of dialysis. And God answered my prayers. But because of that, I had not yet experienced that full blown change in my life. I was just simply tired all the time. I didn’t have to totally change my diet etc. so after my transplant, I went through the feelings of, is this really better? I felt my whole life had been put in that washing machine and moved from the delicate setting to “bulky”! And to complicate things when we were at the hospital Marv picked up something. A day or so after we got home, he got extremely sick and was not in any kind of shape to take care of me. Not to mention feeling like I needed him to leave because I wasn’t supposed to be around anyone sick. How was this going to work? My mind was so overwhelmed, I just wanted to sit down and have a good cry. And I did. With the help of my family, I started to feel like I could put my big girl pants on and do what it took. At least for that day. Marv was quarantined to the upstairs of our house, except our bedroom. He was not allowed in there because I had to sleep there. He was moved to the guest room. I carried a bottle of Lysol with me, spraying it as I went to squash my fears of getting sick. They had drilled into me that if I got sick, depending what it was, I might have to go off my anti rejection drugs so my body could fight the sickness off. Which in turn means I am at risk of losing my kidney. So, I went from feeling this incredible desire to help Marv feel better, to ... really, you got sick NOW? Trust me, he felt bad and wanted to help me, but I was too genuinely frightened to have him around me. So I not only couldn't go anywhere, and only see a very few select people, but now I was kind of on my own. The worst part, I was on my own with emotions like a roller coaster. I truly couldn’t comprehend what was happening to my life. This was a combination of having my body go through a big physical change and all the medicine I was taking. Which, little did I know, was going to get worse before it got any better. The first four months after my transplant were extremely challenging for my mental health. Not everyone reacts like I do to the medicines I am on, but I have gotten literally every side effect possible. And I am on four medicines that have a side effect of depression and anxiety!  Like I said, some struggle with the physical aspects of a transplant, but for me this horrible depression and anxiety was almost too much to handle. I never knew how messed up you can get from medicines that throw off the chemical balance in your brain. Things that 5 years before would have been no big deal, all of a sudden are so overwhelming that I just didn’t want to do anything. I think I made a permanent imprint in my couch during that time. I went from a person who loved being around people to someone who would have rather just been by myself. I was used to photographing a wedding and walking up to people and talking to them all the time. And my job was literally talking to people to make them feel comfortable having their pictures taken. But that thought now petrified me. I truly just wanted someone to reach out and make me feel comfortable so I could live! There were so many friends, church people and family that tried to reach out with meals, phone calls quick visits from a distance, but truthfully I had such a wall up I couldn’t even fully appreciate all of it at the time. So, at this amazing point in life when I wanted so badly to feel excited  that I got a kidney, I was in such a depression, I hate to say I couldn’t even be grateful at that time. Now, I still battle depression, anxiety and tremors. But God has walked with me in so many ways that I can’t help but look back and now, be so very grateful for my kidney and for all those around me did to help carry me. Part of me says I need to apologize for feeling that way. But I know God was showing me another avenue of empathy and understanding that I can feel for those who battle depression and anxiety all the time. I would never been able to have this understanding if I had not gone through this myself. I am currently talking to the doctors about changing meds to see if there might be one that I won’t get these side effects. They are hesitantly willing to try it, but there is a risk my kidney might be rejected. And I also have to start all over again going to get bloodwork 3 times a week.  Im just not sure I’m ready for that risk and hassle with no guarantee right now. God has taught me much Through all of this and that is where I find peace. Knowing God is walking with me and never let’s go.

   Next time I will continue my journey.... until then to God be the glory!