Leaning on God’s Wisdom for Health and Healing
Making progress!
It took about two weeks in order to get me scheduled at the dialysis center. In the meantime, there were some very unpleasant health issues I had to deal with.
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 will give some details in the next post, 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.
