For this first post of this year, I sure didn’t want to start off with a talking about my difficulties but it’s what I’m walking through right now. I have this whole novel of a post that I have written on and off for a couple of months but I feel it needs to be written in its whole entirety. In these last months it consisted in several minor and major surgeries. Even as I attempt to cut down words its hard. I think I will post each surgery individually because it was all different experiences. Something that I have to remember that were all physically & emotionally challenging. However there is victory that I have overcome with each challenge. Honestly, I have been very hard on myself lately and I thank God for writing because this has been the greatest therapy for me.
My healing is going to take a while to recuperate from because these were multiple surgeries back-to-back. Even though I have gone through a lot with my health challenges this would definitely top it off. It’s just not an easy journey. I had a few melt downs mostly recently. This could be from a variety of things including some trauma from the surgeries. I have been asked if I want antidepressants but I have taken them before and I didn’t like feeling nothing. I rather feel it all than not feel at all. So this is exactly what I’m walking through.
I have made strides in embracing this time. I was doing great with my devotion times in prayer, reading scripture and trying to get active. This week however has been a week I would love to do over. I was already on a great streak getting off some of my pain medications. All highly addictive & I don’t want my body relying on them. Physically is one thing but mentally is another. I already have so much aches and pains as it is. I can’t help to always have it in the back of my head; how I need to be stronger than continuous reliance on medications. At the same time manage pain because I learned how important it is to keep pain levels low. Medically there is more benefit to taking medication and being comfortable verses being an agonizing pain, that can overall prolong healing and raise your blood pressure. It’s a catch 22, nothing that I’m not used to. I dealt with this type of balancing game for some time. It’s hard to solve a problem without creating another problem. So where does it end?
It is because of my faith, family, friends, church & the support from my involvement in Celebrate Recovery. I have managed to get through so many challenges especially regarding any addiction. I just can’t allow myself to ever go there but in the meantime as I am dealing with real physical pain; I just have to do what I got to do. Right now its hard to go anywhere for support, without fearing to catch some lingering viruses. I was so happy to go back to church the other week for the first time after a long absence since the surgeries and recovery. It took a step of faith because on a medical stand point they don’t want me in places especially where too many people are gathered during the flu season. However I thirst to be in the atmosphere of worship. It definitely was a blessing and I love working against fears because I know fear isn’t from the Lord. He has given me a spirit of faith. I know when my faith is tested, my endurance can grow (James 1:3-4). A promise that has allowed me to walk through my trials instead of allowing it to paralyze me with fear. Thankfully at church I had a family that has gone through similar situations and they prayed for me. Even with all the hugs I was protected.
I however am not the only person worrying. I also have my mom, my husband and kids; depending where & what I want to do. Which is understandable because they want me to continue to get better. This could be hard to deal with at the times and I constantly ask the Lord to help me to not be stubborn and understand the times he prompts me to be still even when it’s hard not to be. This doesn’t always mean going out and doing things but also being still in my thoughts. I physically am not in shape to be out and about right now but mentally I yearn to be more active.
I have been so tired of being connected to a wound vac. This is from my last surgery which I will write about. It is now over a month and it’s painful and I have to lug it everywhere I go. My days consist of going to the infusion center 3 times a week to receive the infusion medicine for this nasty infection. These days remind me of my dialysis days, I am connected 3-4 hours but this time to IV medication and it wears me down. This is monitored very closely because it is really strong medication for the body. The other 3 days of the week I get home health care which include painful dressing changes. I am tired not being able to do anything else than this. However, I have my family around me. They are my cheerleaders and they don’t doubt for a second that I can’t get through what I’m going through.
This week has been a mix of things. My primary doctor along with my home health care nurse, recommended me to wean off of some of the pain meds as soon as I can; because my prescriptions are all long acting and stays in my system for a while. I had already weaned off of valium a few weeks ago. The other week I planned to wean off the morphine, which I mainly have taken on my dressing changes but since it is now becoming less painful it is a good time to taper off this medicine as well.
Unfortunately, as I approached the long weekend I messed up my neck at the infusion center. If it isn’t one thing it’s another. Different chair & Daniel told me I was sleeping with my head on my shoulders . I looked at my Monday through Friday pill-box and I see that I only have a few percocet left which I planned to still continue until my pain level is stable. So I couldn’t quite make that transition that I had planned. It was the MLK long weekend and this prescription had to be handwritten by the doc. I thought about going to the ER because I wasn’t sure if this was a kink in my neck or the darn infection. My home health nurse reassured me it was definitely a muscle kink with her examination but told me if it continued to definitely go. As I ran out of percocet I took what I had; Tylenol 3 which is lower in strength. This would be the first time I felt the rawness in my wound in a long time. It is still very painful and my husband told me, “You have your meds for this reason.” So I took morphine & soon enough I was comfortable. However I slept through Sunday, where I was supposed to go to the infusion center early that morning because they were close that Monday for the MLK holiday.
This would be the first time I missed an infusion. I really couldn’t do much but just lay around and watch TV. I couldn’t read my normal devotions and my prayer time lead me to dozing off. It was terrible. Tuesday came and it be the first time stepping out of the house since Thursday. I literally was out of commission. I had a MRI done and those scans are never easy to go through but I am ready to know where I am at with everything and know the drill. I thought they could do an MRI on all my surgery areas all at one time but came to realize it will take some time. I couldn’t imagine being in that MRI machine for more than the hour I already spent. If you haven’t had an MRI scan its hard to explain unless you’ve got through it. You lay down in the machine takes you into a confined space. They give you earplugs because the scan has loud laser beam knocking sounds. All I could do is pray and stay calm and get through it.
The next day I was able to make my regular scheduled infusion and it seems that there are now few more patients dealing with infections similar to mine. The infusion center treats all kind of IV phlebotomy issues. Seems that it is becoming more common now. They all started very similar by breathing a fungal spore. It’s scary stuff and their stories are very similar to mine except I am the youngest and immunosuppressed. After all my doctor appointments with all my specialist; which my I.D. doctor made happen. She was happy with the progress and told me the MRI scan was clear. This meant no new growth. I’m not out of the woods yet because I need more scans and really only time can tell. Both she and my nephrologist believe once I’m off the wound vac meaning my wound is healed. They can start cutting down the treatments and start me back on my immunosuppression meds. Which I anticipate because I know my transplanted kidney will need it. So far its gone without the meds for over 2 months. That is a miracle on its own and its been functioning better than it has since I’ve had the transplant. I have a strong donated kidney and I thank God for protecting it through all of this. The main worry is the infusion medication will damage my transplant. As you can see on the chart below my creatinine spiked during the worse time in infection but has come down nicely.
By Friday I barely got out of bed. I didn’t realize how late I was when I got to the infusion center and they couldn’t take me. I couldn’t hold back the tears. Daniel looked at me and grabbed tissue paper. Sometimes there is just no words to say but he knows. I was so frustrated. Daniel being my main caregiver also works full-time and can only do so much. I already missed Monday and here I go again. Since we were already were out in that area of Sacramento we decided to go to Trader Joe’s to go a little grocery shopping. It helped just to be out and I had a blessing that day. A women stopped to talk to me. She told me I have this spirit of calmness about me and she just wanted to talk to me. She shared she was 90 years old and she sure didn’t look like it and she was ready to show me her driver’s license. She told me that she didn’t age because she didn’t stress much in her life and she ate well. Even as a teacher for many years she knew how damaging stress can be.
God totally used her that day to encourage me. She didn’t even know me and my condition but she wanted to share her secret to living a long life. Something that honestly is hard for me to see. I can only take it day by day and pray that I stay long enough to raise up my kids and fulfill all God wants me to in my life. It’s terrible but its a reality to life. There’s a beginning and there is an end. Knowing my health; its something I don’t take lightly. Everyday is a gift and that’s probably why I can be hard on myself when I can’t do much.
This whole week was a lot of highs and lows but I believe I have hit my all time low. I just had this overwhelming feeling that I had enough. It’s a very selfish feeling that I could only pray through. This carried through the weekend. Daniel was off because his nursing certification expired which was timely and I told him to take the kids out. I didn’t want them seeing me in my cloud of misery. I couldn’t stop crying on and off and just prayed for God to help me. I knew my body was going through a lot of changes which included side effects from weaning off meds. I knew that this could happen as it has happened before and all I can do is go through it, remembering my 12 principles from Celebrate Recovery.
My hubby took our boys to see the Monster truck jam and they got to do something fun. I resorted to watching TV and playing family feud on the phone. I have to find ways to get through and praying through my inner soul at the same time and trying to stay focus on all the positive. Like being alive! Even though I’ve gone through similar low points in life, the intensity of this feeling is nothing I could get used to. It’s a feeling of isolation and its lie from the enemy (the bad guy downstairs). I get so angry when he uses my weakness and circumstance but I know God always overcomes. So I do what I can. Sharing what I’m walking though is overcoming. God uses our testimonies, our stories, this is my armor; to call it out as it is. To share my life freely as God gives it freely.
I told Daniel I wanted to go to the early service at church the next day before my make up transfusion. I know if I can’t bring that atmosphere of worship on my own; I need to go to it. Well the alarm didn’t wake us. Here I go again but now I’m vocal with my family and now telling them that I’m tired and I can’t do it anymore. Now getting mad about not going to church is just plain not right. I know that but for some reason I could’t be rational. All I knew at point was I needed to stop talking, cool down and just take responsibility.
One thing I can never forget is that I don’t go through this alone. As a family we all go through it. All in our own way. I tell my story but they all walk through it with me every single day, especially my husband. He is the one holding everything together at the home front and still being my main caretaker, driving me to all the Dr appointments, etc… It’s a terrible feeling and I can’t help but want better circumstances for my family. As I make my apologies, my youngest son reminded me that things are going to get better because they always do. It is very true! Life doesn’t come without obstacles and I know this is shaping all of our lives. One day we’ll look back at this situation and thank Him yet again. The hard times does build perseverance. If I could give my kids anything in the world I want to give them the, “fruit of the spirit which produces: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control” (Galations 5:22-23).
I know those are things that will never parish in their lives. So I need to hold these qualities and be that example in their lives. I know I’m going to have these highs and lows in life. I am going to choose to fight through it and even though this is a long journey in this recovery. I will remain grateful for each day; the good, the bad and the ugly. I have my loved ones rooting me on and I know God is going to use my mess for His messages! (Quote from a home health nurse)
Here are a few promises God has gives to me at this time:
Psalm 56:13: For you have rescued me from death; you have kept my feet from slipping. So now I can walk in your presence, O God, in your life-giving light.
Philippians 3:12-14: No, dear brothers and sisters I have not achieved it, but I focus on the one thing: Forgetting the past and looking forward to what lies ahead. I press on to reach the of the race and heavenly prize for which God, through Christ Jesus is calling.
1 Peter 5: In His kindness God called you to share in His eternal glory by means of Christ Jesus. So after you have suffered a little while, he will restore, support, and strengthen you, and he will place you on firm foundation.
Jeremiah 17:8: They will be like a tree planted by water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit.
If you have more promises to share please share it in a comment. That would bless me!