I went to my naturopath and complained of fatigue. She gave me some supplements to take to support my adrenals. I also noticed that I was experiencing a lot of joint pain after eating too much sugar and/or chocolate. I still ate it occasionally.
I went to the doctor for heart palpitations. Did an EKG, it was normal. Talked about me going on a heart monitor, but the palpitations seemed to settle down on their own.
JANUARY – MAY 2013
In January I was hit hard with the “flu”. It started with really extreme joint pain for a few days, then a fever, upset stomach, and deep fatigue. I was sick for two weeks and had lingering fatigue after that. Two months later, I had the “flu”. This began a cycle of “flu” every four weeks. I was sick so frequently that my body had a hard time bouncing back between illnesses. I got more and more tired between illnesses. I often had times where I would stand up and instantly feel dizzy and faint; I would have to sit down or hold onto something so I wouldn’t fall, and I was afraid I would pass out.
I’ve had a growing, deep fatigue over the last few months. Back in June, I finally went to my primary care doctor, and she gave me some antibiotics to knock out this infection I seem to have in my body. At that time, she did some lab work, and discovered that I was extremely low in Vitamin B12. She had me start doing injections of B12 on a weekly basis. By the end of June, I was more deeply fatigued than ever. I remember going on a date with my husband where practically all I did was cry about how tired I was, and talk apologetically about how I was having a hard time keeping up with all my normal responsibilities.
MONDAY June 24
I worked at VBS that morning, and when I got home, I laid on the couch for the rest of the day. It was like that one morning had taken absolutely everything out of me.
TUESDAY June 25
The next day, I woke up and my muscles felt very weak and strange. I laid around most of that day, and contacted both my primary care doctor and my naturopath, hoping for insight as to whether it was caused by a B12 deficiency, or something else. It had become clear to me that there was definitely something not right in my body.
WEDNESDAY June 26
The next morning, I woke up and was feeling so weak that it was actually difficult to walk. I slowly made it down the stairs. The really scary thing happened when I tried to make breakfast for my son. I could not get my hand to fully grip the knife, and I was not strong enough to actually slice the apple. I immediately started crying, because I was extremely weak, more so than I’ve ever been in my life. I cried on my husband’s shoulder when I told him about it. I went straight my primary care doctor at Kaiser that day, and she ordered a brain MRI and some other labs. Her first thought was multiple sclerosis. That night, my husband was gone at a work dinner, so I somehow forced my hands to slice and chop veggies for soup. By bedtime, my hands and arms were in pain. As I was trying to get Caleb ready for bed, I wasn’t strong enough to get the sleeves of his PJ’s over his wrists! I finally burst into tears, and my sweet boy just scooted over to me and laid his head on my chest, as if to say, “Don’t cry, Mama! I love you. It’s going to be okay.”
THURSDAY June 27
The next day when I woke up, I was too weak to turn the doorknob to get out of my bedroom and I had to call my husband for help. That day I was able to get in for an urgent MRI. By this point, my mom was staying at my house all day to take care of my kids. Here’s an email I sent that day to my friend and prayer partner, Val:
hi val, thank you so much for the prayers. the dr took me seriously and i will be having a brain mri and appt with neurologist. now i am just praying that it will be scheduled sooner rather than later, as my physical function is hampered. i’m unable to do many of the things i normally do in a day and am having to have family take care of my kids. it’s hard to type or prepare food or dress my son. but the Lord has really filled me with peace. i know that he is in control and no matter how this thing will turn out, God wins! my prayer is always for my life to bring him glory, and if this is how he chooses to do it, i’m willing. i’m clinging to 2 corinthians 4:16-18 (I think that’s it…about these light and momentary troubles).
please pray that they can get me in for an mri soon. i’m not on the “urgent” list for one, which means we could be looking at days/weeks. I’ll know more in a few hours. i know an mri wont fix anything, but it would be nice to either rule things out or know what we’re dealing with here. it feels like it could be MS but I’m no doctor and there could be many things i haven’t thought of, i’m sure.
thanks so much for your love and prayers! God has been so good to me and amidst my moments of human fear he has given me his perfect peace which passes all understanding.
FRIDAY June 28
I got a call from my doctor the next day, saying that they had seen changes on my MRI from an MRI that I had had two years ago, and these changes could be consistent with multiple sclerosis. Even though I had already had four weeks of vitamin B12 injections, my doctor recommended that I begin doing B12 injections on a daily basis for five days. However, by the end of that day, I had developed a fever again, as well as extreme joint and muscle pain and a very sore throat.
SATURDAY June 29
I was in tears all morning from my body being in pain. I went into urgent care. There we discovered that I actually tested positive for strep throat. They gave me penicillin which I began to take immediately, and that helped with the sore throat.
SUNDAY June 30
However, the next day, I discovered that my face was beginning to go numb on one side and I had patches of numbness throughout my arms and legs. I had been experiencing tingling and numbness from the beginning of this fatigue, but it was getting worse on a daily basis. Taking a shower had become traumatic for me, because I just didn’t have the strength to stay standing long enough to take a shower. When I would sit upright or stand upright, I would get very very weak and faint and short of breath.
MONDAY July 1
By the next morning, I couldn’t even stay seated upright long enough to change my clothes. My mom had to help me put my bra and shirt on. I couldn’t walk, and I couldn’t move my fingers or toes independently. I could no longer text or do just about anything with my hands. If I did try to use my hands, it was very painful. My parents were practically begging me to go to the emergency room. Through many phone calls with Kaiser that morning, I was finally convinced that I should go to the emergency room. My dad tried to take me, but by the time he helped me get to the bottom of our stairs, my body simply gave out. I was done. I could not walk any further. So my mom had to call 911 and get the ambulance to take me to the hospital. All my vital signs were great, but I couldn’t even keep my eyes open, I was so exhausted. Once we were in the ER, they did a spinal tap to check my spinal fluid for inflammation, and they checked me into the hospital. They put me on the neurology floor for observation.
TUESDAY July 2, 2013
We worked with two hospitalists (doctors) and one neurologist during that time. I was also evaluated by a physical therapist and an occupational therapist. The neurologist spent a long time going over both of my MRI’s, the one from two years ago (when I’d had an episode of vertigo) and the one from that week. He felt that the abnormalities were not multiple sclerosis and could simply be related to migraines. I was beginning to feel convinced that I had some sort of autoimmune condition, because certainly my immune system had shown lots of weaknesses over the last several months. I asked the doctor a lot of questions along these lines (and in fact, the doctor asked what my profession was…he thought I was in the medical profession by how knowledgeably I spoke about auto-immune conditions!). But by that time, most of the illnesses that could be readily identified through a lab test had already been ruled out.
Finally, another doctor came in to speak with us. He sat down and spent a lot of time asking us questions and listening and talking with us. In the absence of any obvious test results pointing to one issue, he felt that it was a perfect storm of several things happening all at once: the five bad “viruses” over the previous six months, my B12 deficiency, and strep throat. He talked a lot about chronic fatigue syndrome. He was very clear and strict with my husband about the fact that I should have absolutely no family responsibilities for at least the next two weeks. He said that it would take 4-6 weeks for me to heal, and that we should be looking for a general trend of improvement over time. The physical therapist and occupational therapist had spent time watching my vital signs when I was laying down, sitting up, and standing. With the exertion that it took my body to go from sitting down to standing up, it was enough to made my heart rate double immediately. The doctor felt it was due to extreme fatigue.
The physical therapist was not sure whether she should release me to go home or to go to a rehab center. Hearing this, I worked very hard to convince her that my family and support system around me would do their very best to make sure that I got the rest I needed when I went home. There was no way I wanted to go to a rehab center and be away from my family!
My sweet husband promised the doctor and therapists that he would take good care of me. I was released from the hospital the day after I had arrived. They sent me home with a walker because I was so weak. My husband purchased a bath stool so that I could sit while showering. I slept on an air mattress in the living room the first couple of nights, because I was too weak to climb the stairs.
During the days leading up to my being admitted to the hospital, I was reminded of Psalm 23. It began to mean more to me than ever, because I really felt as though I was “walking through the valley of the shadow of death”. I pictured myself as a little girl, putting my little hand into Jesus’ great big one, letting him lead me beside still waters. We were in a beautiful green meadow, surrounded by all my favorite flowers, and I imagined myself trusting Jesus with the same trust that a child has when being led by their Father: not knowing where we were going, and not even caring, just feeling safe because I was with Him.
By the time I went to the hospital, the vision had changed, because I couldn’t even picture myself walking with Jesus anymore. Instead, Jesus was seated beside the stream, and I was curled up in his lap. It was all I could do. When the fear of the future would assail me, I would bring up that vision of Jesus just holding me…safe and secure. My physical body was almost paralyzed, but I was safe in the lap of Jesus.
(to be continued…)