It comes as no shock to people who know me or who have read much of anything I have written. It has been nearly 5 years since the suggestion was put before me that the health difficulties I had been experiencing for years could be something chronic–specifically, Multiple Sclerosis. I remember that day and the “Symptom Tracker” papers my doctor sent home with me. She said that several symptoms of MS and Lupus overlapped, and she wanted me to track to see if there was a clear pattern toward one of the two. I had already been given the diagnosis of Chronic Fatigue Syndrome. Another that was at a time mentioned to me was Fibromyalgia. Before this doctor, I had a doctor tell me that the difficulties I had been facing, which included extreme fatigue, dizziness, numbness, and tingling, were probably a result of the depression that gripped me a majority of the time. The day I was given the Symptom tracker, I had gone in for yet another visit, this time because I was experiencing difficulty swallowing. As I left the doctor that day, I thought about the possibility of both illnesses. I tucked the papers deep inside my desk drawer where my husband would not see them. No sense making anyone worry when it could be nothing.
And that is what I thought of either of those diagnoses–nothing, no big deal. I had heard of both, although I had not known anyone personally who had either disease. I remembered as a college student I worked at a maternity/baby store at the mall. One of the girls I work with had Lupus, and she seemed fine to me. Whatever it may be, I knew I was in good shape physically. Certainly a chronic illness was not going to be a big deal. It wasn’t like it was cancer or something.
Those were my thought processes at the time.
Even when my symptoms leaned heavily toward MS, I still did not believe this to be more than a nuisance. Yes, my predominant hand was affected with tingling and numbness. Yes, the bottoms of my feet burned so badly I wanted nothing more than to walk barefoot in the snow. Yes, I was constantly exhausted and dizzy. But serious? I honestly didn’t panic. I had bad days for sure. There were days fear would creep in about the unknown. There were days I could not get out of bed, let alone shower, get dressed and be around people. There were days I needed the cane that we had saved from a knee injury our son had in high school. But there were also days that I accomplished a fair number of tasks. There were days that several loads of laundry were washed, hung outside to dry, brought in, folded, and were put away.
That all changed this past week.
New Year’s Day brought bitterly cold temperatures and wind chill advisories to our state. That’s pretty normal for this area in January. Our youngest daughter, who came for Christmas, needed to be taken back to her own apartment an hour away so she could get ready for the start of her new semester and the resuming of her job as a preschool assistant. I hadn’t been feeling great for a week or ten days prior but chalked that up to the stress of the holidays coupled with a stressful few weeks at work. I made it through Christmas, although I didn’t get everything done I needed to get done. That had never happened before, even when I had four little kids under foot or full time work hours. I beat myself up for not having the cookies made that I had always made, for not getting the fudge made, for not getting all the stocking stuffers wrapped, and for “cheating” on Christmas dinner by ordering a few large pans of pastas from a local restaurant. I told myself once we took our daughter back, I would be able to rest. I had planned a week off of work in January–a week to work on getting the house, messed by the decorations and food and company cleaned up along with down time to rest. After we dropped our daughter off, carted all her gifts and groceries and luggage (yes, she brought laundry to do so she brought a suitcase) and cat (yes, she also brought her cat to “grandma’s” house) I came home and collapsed. There was much to be done, but it would have to wait. I felt like I had a fever, and a quick check with the thermometer confirmed that.
The next morning, with my temperature heading the wrong way, my husband and I decided we should probably visit urgent care. Long story short, that visit was a waste of time which meant the next morning I was much, much worse. Another trip to a different urgent care confirmed just how bad my condition was. My white blood cell count was nearly twice the high end of normal range. As expected, the emergency room doctor said I needed to be admitted and transferred to a larger hospital. For the third time in five months, my body was fighting, unsuccessfully, a sepsis infection. What I didn’t know until later, though, was the delay in transport was due to the doctor trying to decide if I should be admitted to the intensive care unit. In the end I was transported and admitted to a regular room. The high fever, which the nurse stopped recording at 104.2, needed high power antibiotics that could be delivered through via IV. My veins, already scarred from the previous two hospital stays, did not cooperate for yet another infection. Soon, after several pokes, IV antibiotics and fluids were pumped into my body. Several blood cultures were taken as well as a flu test. (If you’ve never had one, you are lucky. Unpleasant is an understatement) The doctor ordered heparin shots twice a day. These were to prevent blood clots since getting out of bed would be out of the question with so many IV bags dripping into me. I had these shots before, and smiled when the morning nurse told me she needed to give me a heparin shot, and “It’s going to hurt.” So much for trying to lessen the blow to the patient! I now sport bruises all over my stomach and a few on the back of my left arm from heparin shots. Life moved slowly as the days were pretty lonely. I don’t have many friends. I guess that shouldn’t surprise me after the rough year 2017 was for relationships.
So what causes one to have pneumonia and sepsis three times in five months?
Multiple Sclerosis. Yep, the MS a didn’t take seriously all of a sudden had my undivided attention. For the first time, really, I understood the seriousness of what MS can do. You see, the difficulty swallowing I have, sometimes causes food or drink to go down the “wrong way”. When I swallow something “the wrong way” the substance ends up in my lungs and causes what is known as aspiration pneumonia. As my body rushes white blood cells to fight the “intruder”, my body temperature climbs to try to force out the infection. The substance, for some reason, ends up in my bloodstream causing sepsis. This last bout was so dangerous that the doctor thought I might require intensive care. Again, it was caught “just in time” according to the doctor. The next step would have been septic shock, which can be deadly. The bottom line is that there is really no fix for this–unless a cure for MS is found. The last five days have made me keenly aware that I really do have a dangerous, chronic disease that has the power to take my life.
As I waited in the emergency room, after being told that I was facing yet another bout of sepsis, I looked at my husband with tears streaming down my face and said, “If I could get to your gun and knew how to use it, I would end my life as soon as I can.” I was heartbroken because I was supposed to spend the next two days watching our new grandson. I let my son and his wife down, and was just so sad that I wasn’t going to be able to sit and rock our little dude. The tears continued on the ambulance ride and into the first several hours at the hospital.
The new year is certainly not starting out as I had planned. This is, though, my reality and one that somehow, I need to learn to accept.