Leaning on God’s Wisdom for Health and Healing
The Early Years, continued.
If you have fibromyalgia and you are here looking to compare symptoms from my early years, I apologize. It is difficult for me to remember details from 35 plus years ago. Those symptoms were combined with postpartum depression and the hustle of a household with four children and many other responsibilities. I had no idea a major change had happened in my body other than the normal things I experience after having a baby.
Now I know fibromyalgia (FMS) started during my pregnancy. I could tell it was different. Different kind of tired. Different pains. I felt a little more emotional. But I just passed it off because of what we had come through and the fact that I hadn’t been pregnant with three kids before.
There was a lot going on during and around that period of life. We have learned major life stressors and traumas trigger autoimmune diseases and conditions. A little history here. (I don’t believe I’ve put this anywhere else in my entries. I only want to explain all of this once because it’s not something I want to harp on or amplify.) My first husband, and my four children’s father, and I were high school sweethearts. We married months after I graduated high school, and he had finished a year of college. We both worked hard and both finished college. He was firmly established in his career, and I had stepped away from mine and was at home with the kids. I loved working, but I wouldn’t have it any other way than to be at home. Not that it matters, but it factors into the busyness that I always had multiple “jobs” going on from home as well as ministry.
Here it is. He had multiple affairs up to this point. Our third child was a surprise, although we had always wanted four! When our third, a son, was three (1998), my husband had an affair. It was at least his second one. We moved my mother-in-law in with us in 1992 when our two daughters were 4 years and 1 year old. Mom was almost completely paralyzed on her left size because of a major brain stem stroke when I was 15 and my husband was 16 (in 1982). It was merely months before we started dating. We had planned all along that she would live with us.
Our third child was a surprise because we didn’t think we could handle another with all the care we were giving to our two children and her. God had other plans! We were thrilled, of course, and in 1995 we welcomed a son. Life continued and my then husband was continuing pursuing his college degree locally. He graduated May or June of 1998. Then in October of 1998 my mother-in-law contracted ovarian cancer and passed away in April 1999. It was a busy and very stressful year.
If you remember, in the midst of all of this, I was dealing with the emotional stress of his affair, and we were trying to heal our marriage. Mom’s sickness did put all of that on the back burner. Good or bad, it moved us past all of the affair madness. His mother and I were extremely close. She was truly another mom to me. I failed to mention that her dad had moved in with us when she did, but he passed months later. He had been in and out of the hospital for about a year. Stack up the traumatic events here.
Now, I’m not saying these events are the reasons for all my issues! Please. I had been dealing with celiac and allergies since I was a child and didn’t understand it. Psoriasis and rosacea hit when I was a teenager. IBS, chronic migraines and asthma in my mid 20s. Now we’re up to 1999-2000 during this last pregnancy and birth. I was diagnosed with FMS right after our last daughter was born. Thankfully it didn’t take long. I switched primary doctors and my new doctor figured it out immediately. With all of that said, the amount of stress in a short amount of time did contribute to FMS. That I believe.
The affair and dealing with that through all of the following, push for him to graduate, mom’s sickness and death, and I forgot to mention we had only been homeschooling the kids about a year and a half when all this happened! When she became ill, we ended up putting the older two back in school for the rest of that year. I tell you, that absolutely broke my heart. It was good for them emotionally so they didn’t have to hear so much discussion about their grandmother being sick, her treatments and what was happening in great detail. They had an escape for part of the day. And they did very well.
Geez. I keep thinking of things! Our oldest was diagnosed during this time with ADD. I know, I know, today it’s all called ADHD, but not in 1997. She did so much better at home with a defined schedule and short, timed intervals for school work. We had worked her up to doing all of her morning work, taking a break, then all of her afternoon work before they were enrolled in public school. The unfortunate part was when we started back at home the next year, our next to oldest was very behind in math. She lost everything she had done at home because they were way behind that in public school. She never recovered. She was at a deficit in math every year after. She always believed she was “bad” at math because of it when it wasn’t her fault, and we couldn’t get past it.
So add the separation from my babies to the list. Listen, some of you may be laughing at me. But we ended up homeschooling our children from 1997 until 2019 and then I also homeschooled my niece for six years until 2024. I’m still consulting with my sister to help my niece finish high school this year. We loved it, did things, and went places we never could have otherwise. I know 1997-2000 was stressful, but I have my dear youngest daughter through it all. She was born almost exactly one year after mom passed away.
Another part of my life was going to change. We were also very close to my parents. They lived about three minutes from us, and we saw them multiple times a week and talked to them almost every day. My dad is a pastor and our church was maybe a mile from our house. He had been the pastor of our church for 21 years and in August of 2000 he and my mom moved to another state to pastor another church which was a little over two hours away.
I remember in the midst of recovery and this new pain and a multitude of new issues, helping mom and dad paint their house and declutter and pack to move. We were back to homeschooling, so we were able to travel with them and help setup their new home. This was wonderful because we were able to travel to their home every two or three weeks and stay a few days at a time with them. We did this for almost two years until mom got a full time job there. Not long after that I was employed at our new church in the children’s department and all of us had new responsibilities. We still visited often.
As far as my FMS goes, a had a connection to a naturopathic doctor through a very close friend. She did some testing on me and my oldest daughter. My daughter had started having hives and she wanted to see what she could find out in connection with her ADD. We made some major changes in our family’s diet and I added lots of supplements. If I can remember correctly this is at least some of what we did. We cut out the red dyes for my daughter. l
New Doctor
Well, I wish there was more to talk about this month. We’re trying to adjust to our new schedule. It has been great for my husband and I going to dialysis on the same days and at the same time. The only drawback is our chair time is 6:00am. We are both night owls, so it’s been a jolt. We’ll figure it out, though.
One update. I have made a decision to work with a new functional medicine doctor. He and his team focus on the autoimmune disease side of things. This is exactly what we need to knock out in my case. The culmination and convergence of my autoimmune diseases is why I have chronic kidney disease. I’m hopeful to see how this is going to help.
I realize I haven’t moved forward with chronicling my past. It looks like we left off right after I was diagnosed with fibromyalgia, which was in 2000. Let’s pick up there in the next entry.
I’ve felt like a taxi.
For the past few months my husband and I have both been going to dialysis on different days. Yes, my husband is a patient, too. He began in August of 2023 after a serious hospital stay. It was around that time that I stopped doing my treatments at home.
Fun fact: the doctors and all of my care team at the time told me that I would die in about two weeks time if I stopped doing treatments. Guess what! I didn’t! I don’t recommend stopping doctor’s orders. Please don’t. I do have to give God credit for what he has done in my life. I also have to repent publicly for not obeying him to begin with. When I was faced with the decision to begin dialysis, God told me it was not time. I was being pressured all around me and I caved. I knew it was wrong, and I didn’t listen. I have since paid the consequences. God has still sustained me, praise Him!
So my husband has been going to dialysis three times a week at a center, not doing it at home like I did. He is unable to drive due to his poor eyesight. It hasn’t been a big deal. I drive him, come home, then four hours later go and pick him up. But now, the center we go to doesn’t allow family members to treat at the same time. This means that I’m driving him, making four trips three days a week, then driving myself back and fourth three days a week. All in all 18 trips a week on six days. There is only one day a week I’m not going to the center. What makes it worse, those six days, one of is feels horrible all day long recovering from the treatment.
But good news! We found out today that we will be moving March 1st to a new center that will be opening up new days there. They allow us to do treatment on the same day and at the same time. This will be wonderful. Of course, we will both feel horrible on the same day, but we will be able to rest those days and feel better the other four days of the week. Well, as good as we can feel as chronic kidney disease patients with all of the other things we deal with. It will be easier to handle than one of us feeling horrible almost all week long.
The only kicker with this new schedule is we will have to get up around 4:45 am and be at the center by 6:00 am. Neither of us are early-risers, so we’ll have to get used to going to bed earlier and getting up earlier. I see a lot of naps in our future, or at least mine!
God is continuing to teach me in all of this. I will admit I was really nervous going into the center for treatments instead of doing it at home like before. Being at home, with your social circle really small, leaves little room for meeting people and sharing encouragement with others, much less having the opportunity to share the Good News of salvation. I have had to be willing for God to use me however he can, and teach me in this season as well. There have been many wonderful conversations even in this short amount of time for me to encourage and to be encouraged.
May your day be blessed!
Making progress!
I am home from the hospital and waiting. It took about two weeks in order to get me scheduled at the dialysis center. It has felt like an eternity, because there were some very unpleasant health issues I had to deal with.
The couch became my best friend. I found it all but impossible to sleep in the bed. My body had around 15 pounds of excess fluid which made me miserable. I had to sleep sitting as straight up as possible. Even then, I would have to stop, sit up and try and take in a very deep breath. I constantly felt like I couldn’t breath and was drowning. It took a much meditation and dependance on God for peace to stay calm and not panic.
Of course, this drowning feeling filled my abdomen and made me not want to eat. This could be a good thing, and I did lose a little weight. But I have low blood sugar, hypoglycemia, and not eating causes some serious symptoms. I must keep my protein and carbohydrates balanced throughout the day to keep my blood sugar levels stable. That’s pretty difficult when you don’t want to eat anything. I would then get nauseous from not eating, making it more difficult to eat. My stomach was so bloated from the fluid I didn’t want to drink either. So a nutritious smoothie or any liquid was out as well. But I did figure it out and managed to eat very small amounts to combat it all.
Once I started dialysis, we had to take it slow. You can’t just remove 15 pounds of fluid all at once! Believe it or not, that will dehydrate you, cause headaches and cramps. So we would take off between 5-6 pounds each time. Even that amount was pushing it, and we couldn’t always do that much. I believe it took about two weeks before we made it down to my actual weight. It didn’t matter how slow, I immediately felt relief from that first day.
My take on dialysis is that it has it’s place, but I don’t believe it should be the end all. God has given us so many ways to take care of our bodies that we can use all of them to heal ourselves. I truly wish everyone would work together to heal instead of treat symptoms. But I dare not rant on the subject. I will only tell my story and how the path I believe God wants me to take. So for now, dialysis is the modality while we are working toward knocking the legs out from under the many autoimmune diseases I have that has put me in the dialysis chair.
Until my next update, blessings!
What a crazy couple of weeks.
For the past six months or so I have been dealing with low hemoglobin issues related to my rare kidney disease. A bit of background: I was diagnosed with it in December of 2017, went through high dose steroid and chemotherapy treatments to no avail, remained stable for a bit then started dialysis in 2022 until 2023. I came off of dialysis in June of 2023 and God has really done miracles keeping me alive.
Here lately my hemoglobin has gotten to dangerously low levels. I went to the hospital in September, then one month later in October then about three weeks later at the beginning of November. After this last treatment I felt better like usually do. I had a trip planned to Florida where my oldest daughter lives, about 7 hours drive, so I could help with the grandkids while she and her husband went on a business trip over the weekend.
I traveled down and had a wonderful weekend with them. They are six and eight years old. So they were a lot of help when I needed it. We worked together to shop for groceries, cook and clean up what little we messed up. They pretty much take care of themselves. It was a lot of fun and not difficult. We also had a lot of fun crafting and hanging out!
After I got home, I was tired. I expected to be tired. I had driven seven hours and expended a lot of energy. Those kids rise early! But it was only a couple days and I knew something was different about this tired. Yes, my hemoglobin had dropped again, but there was something else going on. My husband is unable to drive, so I usually drive myself to the emergency room. That wasn’t happening this time! I felt kind of out of my head, a little dizzy and just not my normal self. I couldn’t breathe well and it wasn’t my asthma. My husband called the ambulance.
When my hemoglobin drops, the treatment was a blood transfusion each time. Sometimes I received more than one, and this last time I had to have three. It was a rough stay in the hospital. Not just because I had to have that much blood, but other complications had developed at this point in my disease that I would soon become aware of.
I went in on Sunday morning, November 16. I was nauseous all day. My head was killing me by the end of it and nothing seemed to help. I tried to eat but couldn’t. My youngest daughter was a champ! She stayed with me until they got me some serious pain meds and I fell asleep. My blood pressure was also out the roof.
On Monday they added a new blood pressure medicine. Unfortunately I was allergic to it but since I didn’t show the normal allergic signs, none of us realized that was happening. So my nausea, headache and sinus pressure only got worse. I put it together when I came home and started taking the meds myself. About an hour after I took it the symptoms hit. So I stopped that medication and felt so much better. My blood pressure has started leveling out as well.
My trip to Florida began to raise all kinds of flags. Since I was having such a hard time breathing, they were afraid I had blood clots. They did ultrasounds on my legs. Later they did an echocardiogram on my heart. Then they wanted to do another test on my heart. I had been given news that my heart murmur was pretty severe, leaflets had developed on my heart valve and I was in fluid overload. My only option at this point was to go back on dialysis. I have been placed on a medicine in the meantime to help with some of the fluid overload. But we are praying I am able to start dialysis in the next week or so. I am on the top of the list.
Right now I am very weak and I have had to back out of most all of my responsibilities. My blog and devotions are the only things I can do right now. I only want others to see how faithful God is in my life through whatever happens.
Hello, autoimmune! The early years.
The unfortunate reality with autoimmune diseases or conditions is once you have one they tend to multiply. I didn’t know what an autoimmune disease or condition was, much less that I had multiple of them, until I was around 40 years old. What I did know was the older I was, the more things were going wrong and they were kind of big deals. I couldn’t figure out why I felt so bad.
The first health issue I can remember having to deal with was psoriasis on my scalp and forehead. It was frustrating when it flared, but we managed to find ways to take care of it. This first showed up in my early teens. At this time I also had a lot of stomach problems, but I wasn’t throwing up, just pain. It seemed to be mostly in the afternoon when I would come home from school and a lot of the time I also had a headache. We kind of chalked it up to stress and “growing up”. I would learn many years later this was because I had Celiac disease.
So for awhile, I dealt with stomach issues which as a twenty-something was diagnosed as IBS. My skin got worse and I needed care for rosacea. While I had dealt with pretty bad allergies and sinus infections for years, all of a sudden one day I had an asthma attack. Brand new! Asthma wasn’t something I had been dealing with. Within a couple of years were added IBS, rosacea, and asthma to psoriasis and my undiagnosed and unknown Celiac – five autoimmune diseases.
I kind of coasted along with all of this and not understanding my gastrointestinal issues. My doctors off and on tried to diagnose if it was ulcers and other things. They labeled it GERD at one time and I was put on meds for it. I was plagued with heartburn and burning in my stomach. Then I became pregnant in 1999 with our last child. Thankfully, my GI issues calmed down a bit by then. But about midway through my pregnancy I was hit with fibromyalgia. It took a bit to understand it was different from being pregnancy tired. The additional symptoms, which lingered and were many, after she was born showed us it was not just the pregnancy. This was the beginning of a difficult two years.
I will be honest with you. I will not be able to chronicle those two years for you. I may be able to give some details in the future, but for now I will leave you with this. It was a very difficult time for our family. I spent a lot of time in the bed, doing my best to cope with a newborn, three children, homeschooling them, handling church responsibilities, not letting the house go completely to pot, and dealing with the horrible body pain, tiredness, fogginess, and so many other symptoms I cannot explain that came on me like a freight train. My older three children were amazing during this time. They rallied around me and helped in ways they didn’t realize.
