Leaning on God’s Wisdom for Health and Heal
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.
