Chronic Hope Part Three: Torrential Downpour

I awakened to the sound of my alarm at 4am reminding me that today is surgery day. For everyone else it was just a typical Monday but for me it was the day I was going to find out if I can have children; it was the day that I would find out if I would be in debilitating pain for the rest of my life. I was also aware that this was the day that I could be told we were no closer to finding answers to what was happening to my body. I think most of all I wanted answers to what was causing all of this pain. At the time I felt that if I could at least have a name for this thing then it would be a start to understanding how to fight the disease. In my opinion, the most common feeling or question for women who are undergoing a laparoscopic surgery in order to diagnose endometriosis is, “what if I don’t have it and have wasted everyone’s time and money?” I cannot tell you how many women I have talked with who share this same fear or question. I was pretty confident that it was endo but of course fear and doubt tried to slip into my mind that morning. I decided to trust that God had this in control and got ready to leave for the surgical center. It was nice to have the surgery scheduled for 7:30am because it meant we needed to be at the hospital at 5:30am. This was perfect for me because my mind didn’t have enough time to wake up and start wondering about the possible complications. Micah and I prayed before surgery for healing and answers. Before I knew it I was prepped and ready for surgery being told to count backwards to ten.

The surgery itself didn’t take too long and of course for me it felt like a short nap. When I was finally coherent my doctor went over what he found during the surgery with both Micah and I. He explained that he removed an adhesion (scar tissue) that had formed on my left ovary and attached that ovary to my colon. Ouch. That explained the pain on my left side. He told me I had stage one disease and that the pain and stages don’t usually match with endo. Often someone like me with minimal disease could be in excruciating pain but someone with stage four disease with endo infiltrating and fusing together organs could have no pain at all. It completely depends on the person and where and how the disease affects them. Staging of endometriosis is in regards to fertility. The more disease someone has, the more fertility is typically affected since a majority of patients have endo in their pelvis. Interestingly enough, endometriosis has been found on every organ except the spleen so please understand it has also been found everywhere outside of the pelvis.

My doctor went on to tell us we could start a family and shouldn’t have any issues. I wanted to be excited but something inside me didn’t trust that answer. It’s everything I wanted to hear but my gut didn’t believe him. At that time I was under the impression that with retrograde menstruation (prevailing theory among non-specialists) the endometrial tissue could spread again without warning. He put me on a different birth control and wanted me to continuously take it without breaks since we weren’t quite ready to start a family yet. Micah and I were happy that we finally had a name for this disease that was wreaking havoc in our lives. I was discharged that day and spent about 6 weeks recovering from that surgery. It was a relief to know what was attacking me but it felt like this was just the beginning.  It was as if the raging storm was still here and the rising water the torrential downpour was beginning to flood the streets.

When I was recuperating from surgery it dawned on me that we really didn’t have a community of support or believers to connect with during these difficult times. This battle with chronic illness wasn’t just physical; it was an attack on my mind, body, and spirit. It wasn’t just me who was affected; Micah was also undergoing the same spiritual attack. It’s easy to forget about the caregiver or spouse of someone who is chronically ill and the challenges they face. Because we are one, we were both hit with this raging storm in different ways. We both had strayed away from going to church and honestly didn’t want to go for a number of ‘good reasons we had convinced ourselves over the years. My personal background with the church is not uncommon unfortunately.

I’d rather not go into detail at this time about my past experiences with abuse and traumas but I will say that as a result of the environment I grew up in, I developed a deep mistrust for the church and church leaders. I think I went to church until I was 8, and then we stopped going. I survived by observing behavior not what people’s intentions were or how they promised to change. Let’s just say the pathological behavior I observed had a profound effect on me and led me to be wary of the church. Not only had I experienced traumas at home, any time I visited a church I either didn’t sense God’s presence or was treated poorly by the church members themselves.

Additionally, there are plenty of manipulators that climb the ranks in churches that fly under the radar of most people. I don’t think I’m inventing the wheel with this last statement. Christianity as well as any religion can be a safe haven for manipulators, abusers, and toxic individuals in general.  Yes, no one is perfect and there are people in churches that may fall into the category of ‘toxic’ that are honestly trying to better themselves; I’m not talking about those people. I’m actually talking about people who seek to manipulate, control, and hurt others in the name of Jesus- there’s a very big difference. In all honesty I currently know of at least 1 person who is high up in a church in my city that is a toxic manipulator-and it’s known as a ‘good’ church. So, it’s understandable how I arrived at the conclusion that I didn’t want to go to church because of my past but also because I can spot the manipulators that exploit the church – and there it is- it all comes back to our human reasoning. There are a good number of Christians that refuse to go back to church for what sound like really good reasons. I was one of those Christians and thought that I could have a one on one relationship with Jesus in the safety of my own home and that would be enough. Unfortunately, it’s so easy to talk yourself out of the responsibility of attending church.

You see, what I failed to comprehend until I was attacked with that endo flare was that Jesus is coming back for his bride, the church, not us as individual believers. It doesn’t mean that if you don’t go to church that you’re going to hell, but you are setting yourself up for failure. I’m just going to say it, there is only so much spiritual growth you can achieve alone with Jesus.  It is a fatal mistake to think you can make it by yourself with Jesus; it’s dangerous because it is that much easier for the enemy to first isolate, and then annihilate you when you’re all alone with no support. Think about it for a moment, it is said several times that the enemy roams around like a roaring lion, fiercely hungry seeking someone to devour.

Be sober [well balanced and self-disciplined], be alert and cautious at all times. That enemy of yours, the devil, prowls around like a roaring lion [fiercely hungry], seeking someone to devour. But resist him, be firm in your faith [against his attack—rooted, established, immovable], knowing that the same experiences of suffering are being experienced by your brothers and sisters throughout the world. [You do not suffer alone.]  1 Peter 5-9 AMP

Lions in nature hunt by separating the weak, young, old, outcast, etc., and picking them off one by one from the group. Lions also wait for pray to get separated by not paying attention or getting distracted and not moving with the heard. Lions stalk and attack their pray but they do not have great stamina and they do not do well in long pursuit. God is cuing us into the fact that although the enemy attacks most often from the shadows when we least expect him, we can endure the attack and persevere into victory by way of faith. The enemy cannot endure like we can and that is why endurance and perseverance are required before experiencing victory. If the enemy cannot separate us from the heard or church to begin with, his footing is unsteady from the very beginning and we don’t fight this battle by ourselves.

Being bedridden with pain helped me to realize that church isn’t about attending to check it off a list or attending to only get something from the sermon. Each church is made up of members that are meant to function as one body; which “body part” you are and which church you are called to is completely up to God- or at least that is how it is supposed to be. We can begin to identify and develop our spiritual gifts as we start to function within the body by serving, worshiping, praying, and giving. I had believed the lie that we can make it on our own with Jesus and realized how dangerous and naïve it was to believe such a thing. I wish I could say I would have seen the light without getting sick but I don’t think that’s true. We still had some learning to do in this area of finding a church but we didn’t let that stand in our way. Micah and I did go to a couple of churches many years ago but because of our background and my inexperience with Pentecostal churches we decided to not go back. We’ve both had more experiences with Baptist and non-denominational churches in the past so you can imagine the stark differences. I’m not really a fan of saying a particular denomination is better than another because I believe we are all called to a certain church that God assigns us to function in. Each church has an assignment from God, who am I to say which denomination is better or more right? Unfortunately, we all have our own biases to work on and one of mine was charismatic or Pentecostal churches.

There was one church that stood out to us though and I would think about the pastor’s words from time to time. I heard the truth in his words when we visited and I remember how drawn I was to that place. I was standing in my own way from going back because of fear of the unknown. I also had people warn me about Pentecostal churches and how “crazy” they can be, which is complete rubbish. Those people were well intentioned of course but were ignorant just like I was. I also think that some religious organizations teach that charismatic churches are wrong for certain reasons, so some people might be taught to avoid them altogether.  I thought that because the people that warned me to avoid those types of churches were older I could trust them, but we all know that wisdom doesn’t necessarily come with age. Unfortunately, I let my own bias and fear of the unknown stop me from going back. This was maybe 6 or 7 years ago that we visited that church and I knew that God was calling us to go back to church again. I had worked through my personal issues with the church and really found this scripture helpful:

Although my father and my mother have abandoned me, yet the Lord will take me up [adopt me as His child]. Teach me Your way, O Lord, And lead me on a level path Because of my enemies [who lie in wait]. Do not give me up to the will of my adversaries, for false witnesses have come against me; they breathe out violence. I would have despaired had I not believed that I would see the goodness of the Lord in the land of the living. Wait for and confidently expect the Lord; be strong and let your heart take courage; yes, wait for and confidently expect the Lord. Psalms 27:10-14

Any Christian who has been hurt in the name of Jesus has to heal on their own time, in their own way. Some stop believing, others decide to go it alone with Jesus, and others choose to not deal with their trauma and pain and continue to stay emotionally stunted in or out of church. Most people who experience similar things I have endured and have worked through their issues, tend to either stop believing in God or decide to go it alone with Jesus. This scripture in particular was so freeing to me and really is one of my favorites to read because we all need a reminder that it’s okay to not come from a ‘perfect’ Christian background. Although I had dealt with my traumas, it was really time to accept that I needed to uphold my end of the bargain and go back to church; not just for me but for God. Only, which church should we go to? I was certainly in no shape to go to a church at that point since I was still experiencing random bouts of extreme pain and fatigue but we knew that we needed to try to find a church to go to once my health stabilized.

How does one even find a church? There were a lot of unknown variables with trying to find a church. I don’t care about being entertained, or how many small groups are offered. What is the message of the overall Church? I wanted to go where I heard truth, felt safe, and would be pushed to be better each day; I wanted to be equipped not just taught a bible lesson once a week. It was an overwhelming feeling to say the least but I knew we needed to find our people no matter what negative experiences we had in our past. We prayed for God to lead us to the church he wanted us to function and thrive in. We wanted to be a part of a church family and prayed for patience with healing and being led to our church.

As a side note, I don’t think I’ll ever pray for patience again. Those of you who have prayed for patience know exactly what I’m talking about.

As time went on I kept that hope of finding a church fresh in my mind as my current health issues continued to take center stage in our lives. My recovery was going well but I was still having issues with birth control and breakthrough bleeding. Just as the doctor ordered, I started taking a new prescription of birth control continuously without breaks. When I started the continuous birth control, I felt my skin and hair change for the worse. I didn’t care for how I felt taking birth control this way but we weren’t quite ready to start a family and I didn’t want to chance having more endo grow. I switched to new birth control pills a couple of times and still didn’t feel normal and because I was told this would halt the progression of endo in the future, I just accepted the symptoms as my new normal. In the months after surgery I started to get more energy but experienced the familiar pain on the left side of my pelvis next to my uterus (pelvic sidewall). When I questioned my OBGYN if this was endo he denied that it could be endo because he didn’t see any disease located in that spot during surgery. That’s about the time that I started to question my doctor’s expertise with this disease; the first inklings of “Gee I’ve experienced this pain before and it feels just like the other pain that I know is endo. Does my doctor really know what he’s doing here?” began to spark my curiosity. After all, I know my body better than any of these medical professionals; it was time to start investigating this disease in depth. I could feel the mounting pressure in my chest from the Holy Spirit telling me now is the time to fight this thing; but how? I can’t seem to find any information on the internet other than what my doctor has said about endo; I refused to believe that I was going to need surgery every few years because tissue would always transplant from retrograde menstruation. Something doesn’t sound right here; how has no one studied this? This disease affects more people than type two diabetes and I’m supposed to believe this is the best that medicine has to offer me? Medical hormonal suppression or an eventual complete hysterectomy after years of surgeries, those were my choices. It wasn’t that I simply wanted to hear better treatment options it was that the information actually felt wrong. Something just wasn’t adding up and that’s when I began searching for answers everywhere.

It felt so impossible to find information on this topic because it was even harder to find than the research on nutrition I had found months earlier. Only, I realized that I stumbled upon the research for nutrition by looking up all the plant based doctors from every documentary I had watched. It was really God that nudged me to do that after I had prayed for clarity on how to heal my body and information on the healthiest lifestyle I could live. It was a reminder to trust God for the leading and not rely on my own might for seeking this information. One night I decided to re-read the book of Mark to ease my mind about all of this. As I was reading these verses stood out to me like never before:

And a woman was there who had been subject to bleeding for twelve years. She had suffered a great deal under the care of many doctors and had spent all she had, yet instead of getting better she grew worse. When she heard about Jesus, she came up behind him in the crowd and touched his cloak, because she thought, “If I just touch his clothes, I will be healed.” Immediately her bleeding stopped and she felt in her body that she was freed from her suffering. At once Jesus realized that power had gone out from him. He turned around in the crowd and asked, “Who touched my clothes?” “You see the people crowding against you,” his disciples answered, “and yet you can ask, ‘Who touched me?’ “ But Jesus kept looking around to see who had done it. Then the woman, knowing what had happened to her, came and fell at his feet and, trembling with fear, told him the whole truth. He said to her, “Daughter, your faith has healed you. Go in peace and be freed from your suffering.” Mark 5:25-34

I have read that passage before but of course now I actually did have an issue of bleeding. I knew exactly what God wanted me to do. I decided right then and there that I was going to push through whatever “crowd” I needed to in order to touch Jesus’s robe and never let go; nothing was going to stop me from getting to the truth of this disease as I felt that was what God was instructing me to do to receive my healing. Let me clarify that last sentence: It’s not that I was trying to receive healing in my own might but that God was requiring me to trust him and lean on the Holy Spirit to point me in the right direction. He was instructing me to have the mindset that the woman had, she told herself that if she could just touch his garment she would be healed. It’s a mindset I believe that is required to believe in healing because often the journey isn’t instantaneous. I also felt that He was asking me to fight against this disease because it was going to make me who he needed me to be to further his kingdom and help others. I said yes with no idea what purpose he had in mind but I knew that this would not be an easy journey.

I had prayed for patience and that’s exactly what would be required of me on this journey of finding answers and healing. Let me share that one of the most dangerous things you can do while waiting for healing is to disengage with God. It’s in the waiting that God really stretches our faith, builds our endurance, creates space for hope, and then fulfills his promises. There is no timeline we can track, only God’s leading and instruction in the waiting. It is probably the hardest part of the entire experience but it is also the part that ultimately shapes us into who he needs us to be for his purpose. It’s in the waiting that unbelief and blind spots are also revealed so I will add that waiting on God is not a time for complacency or to be idle. The waiting is where the spiritual growth happens but not without us digging our heals into the sand and waiting on the preceding word of the Lord.

That day I decided to pursue and hang onto Jesus’s robe and never let go, even after I receive my healing. I realized that I needed to utilize the deep awareness of my mind, spirit, and body to start tracking all of my symptoms. It was so hard to distinguish what exactly was interstitial cystitis pain, endometriosis pain, and a different pelvic pain that seemed to aggravate the other two diseases. Believe it or not all of these conditions spark similar but distinctly different pain. All I needed to do was figure out what the third pelvic pain generator was so I could better understand if it was new endometriosis legions in new locations, new IC symptoms, or something different all together.

The new symptoms that I began experiencing were issues emptying my bladder, burning urethra, and frequently needing to empty my bladder as often as every 30 minutes. Unfortunately intercourse greatly exacerbated these symptoms, which was not fun at all to say the least. I originally suspected a UTI or an IC flare since the two appear identical and went to see my urologist. After some tests ruling out bladder retention and infection, I was referred to a pelvic floor physical therapist. Luckily the pelvic floor physical therapists work in the same building as my urologist so it was easy getting onto their schedule. It was from the pelvic floor physical therapists that I learned about pelvic floor dysfunction (definition here). We all have pelvic floor muscles that can get out of balance due to a number of causes. For me, experiencing chronic pelvic pain for 17 years caused my pelvic floor muscles to become tight and weak. This is so common among pelvic pain patients and yet not many doctors recommend pelvic floor physical therapy to their patients.

With pelvic floor dysfunction (PFD), there are varying amounts of symptoms for each person and everyone will need an individualized approach for treatment. For me, I learned various pelvic floor stretches that I do daily and mindfulness techniques to calm the body especially during a flare but also in general to calm the central nervous system. There are other tools that are used with pelvic floor physical therapy and I recommend anyone who has ever experienced pelvic pain or giving birth to see a physical therapist that specializes in pelvic floor physical therapy; it will seriously change your life!

I was seeing two physical therapists, one is certified in internal PT and the other is certified in external PT. I was learning so much about pelvic floor dysfunction and how simple things like stretch marks indicate damage to the surrounding fascia and are signs of PFD when they are located on the abdomen, back, thighs, pelvic area, etc. I use to think stretch marks were from gaining weight too quickly but not everyone who is overweight or has gained weight quickly has stretch marks. Stretch marks are not inevitable with pregnancy and we can massage out the damaged fascia eliminating stretch marks altogether.  Additionally, they used biofeedback to locate areas where I was unconsciously guarding with my pelvic floor muscles from many years in pain. Once I was able to see that I was still tensing up muscles that I thought I was relaxing I was able to mindfully target those muscles and relax. It sounds more complicated than it actually is and was an interesting experience. With their help, I realized that the intense back pain that I felt with every period was PFD. They were explaining about how they were going to start doing visceral mobilizations where they would actually rotate my abdominal organs since most people with chronic pelvic diseases have organs that do not or cannot rotate properly. Apparently, our organs are supposed to be in constant rotation and it begs the question of how women with endo or other pelvic pain diseases are negatively affected when their organs cannot properly rotate due to adhesions or other reasons.

Although physical therapy was extremely helpful, I would get better and then regress every few weeks. I felt it was because the endo was still there, causing me discomfort with pelvic floor dysfunction. All of my symptoms were gone except for the pelvic pain and urinary frequency. I was able to extend the time between voiding from every 30 minutes to every 1.5 hours. I couldn’t extend holding my bladder any longer than an hour and a half; the pelvic floor dysfunction wouldn’t allow it. I told my PTs that the disease was still present and I intended to find better treatment. They shared that they often see endo patients that have recurrent disease and it is just something that is going to happen with endo. I appreciated that they wanted to try and help but they practice pelvic floor physical therapy, they do not have all the answers with endo and I was not going to allow doubt to creep in now.

All of this was happening in the months after surgery. Before I could blink it was summer and I was gaining energy each day. By that time I had lost about 60lbs just by living a whole foods plant based lifestyle without exercise for obvious reasons. It was amazing because I wasn’t restricting myself, I felt full and healthy while eating whole foods and minimal processed foods as well as no oils. I honestly only noticed because my clothes were too big; there was so much going on that I didn’t even have the time to notice the weight was still coming off. At that point weight loss was the last thing on my mind and yet the weight was melting off with ease. It never ceases to amaze me when I am obedient in what God asks me to do and I experience the fruits of following his instruction. Years ago I would have never even considered not eating meat and even scoffed at the idea of a vegan or whole foods plant based diet and lifestyle. Oh man, how the tides have turned. In this whole experience of diet and lifestyle change, I have learned to be careful to not say “I could never do that” about something that seems extreme or completely different from what I’m used to experiencing. You never know what God is going to ask you to do and it’s hard to swallow those words when God has instructed you to do the unthinkable. To be fair, I asked God to clearly show me the healthiest way to eat, so I brought this on myself. I noticed that if I ate more ‘vegan’ and had more processed foods or added oils, I would experience more fatigue and pain than when I was completely whole foods plant based so I tried to avoid processed vegan treats and added oils at all costs. Without realizing it, I was treating endo and IC with a multi-dimensional approach. I didn’t just attempt to treat these diseases with medical procedures, I was also treating them with diet and lifestyle changes as well as physical therapy. Some people only believe in western medicine and others are staunch supporters of eastern medicine but my beliefs land somewhere in the middle. I was open to all treatments and really believe that integrating evidenced based treatments, no matter where they originate from, is the best way to approach chronic illnesses like these.

The diet change, physical therapy, and hormonal birth control all helped to alleviate my symptoms but they weren’t getting rid of the cause of these diseases, specifically endometriosis. I prayed about being healed and for God to miraculously heal me or show me the way to healing. It was right about this time that we were given a bunch of books that were Jacquita’s. The first book I looked into was an amplified Bible that had her notes all over it. On the inside cover she wrote the following scripture:

It hit me like a ton of bricks that it was a crystal clear message from the Holy Spirit. I really had a sense of calm from this and trusted that whatever happens, I know God is going to heal me; I had no idea how or when the healing was coming but this was a promise that shattered any doubt I might have had. At a time when I didn’t have a lot of emotional support this was perfectly timed to keep me hopeful in God’s promise of healing.

It became clear that this was about a complete spiritual and physical healing that was desperately needed. To see it written in her handwriting gave me goosebumps on the back of my neck. I don’t know if in heaven you’re allowed to send messages or signs to those you love but if God does allow it, I wondered if it was also a nudge from Jacquita to keep believing. If there was one person who would have understood this fight, it would have been her.

Chronic Hope Part Four: The Rising Flood Waters available here.