Well, as luck would have it, yet another bump has come up in the road. I'm not exactly sure what is all involved in this little hiccup. At this point all that's showing up in the labs that I can see is that I probably am in the process of passing another kidney stone. There has to be some reason why I always have kidney stones, but I don't know exactly what that is yet. I'm not a doctor. Ugh. Dr. Kline, as always, is concerned and doing his best to give me the best care possible. Even he is at a loss of what to do. I don't blame him for that, he's a Family Practitioner although he did ER for a long time and still has a rotation in our local ER. Family Practitioners generally know a little about a lot. I really trust Dr. Kline as he is a very experience, knowledgeable, physician. It really helps to be close to my doctor and have someone who is patient and listens to me and my concerns without making me feel like a head case. There's a lot to be said for that.
Anyway.
I am in a lot of pain and am quite weak. Dr. Kline ran a lot of labs and none of them have really provided any conclusive answers. Not terribly surprising, but very frustrating. There are a few things that are becoming quite concerning. My lack of energy is a really difficult thing to deal with and I feel absolutely hopeless at times. Getting out of bed in the morning (well, afternoon usually) is difficult and feels nearly impossible. Showering, bathing, doing my hair, my makeup, driving to work, cooking and eating food is such a monumental task that I am not sure I can even manage it most days. Part of what may be my problem is that they wanted me to start taking a low dose of aspirin due to my issues with blood pressure leading to a higher risk of stroke. However, Aspirin is a mito toxic drug, which means that it can lead to a worsening of Mito symptoms. I think this may be some of the culprit for my decline. More than likely there is some disease progression occurring. I'm not trying to be ignorant about that, because I want to be realistic about things and not have my head in the clouds. It has been twelve long years of fighting for answers, pain control, and more quality of life which have yielded very few results.
Fast forward to yesterday, I ended up being in a great deal of pain. Usually, I take my narcotic pain medication only at night. Since I've had this terrible abdominal pain, I've needed to take them way more than I would like. Unfortunately, this only worsens my problems with GI motility. As does the fact that I have to take an iron supplement daily. Though I absolutely hate going to the hospital, I finally had to go in because I could not control my pain. My PCP, thankfully was on call and is always willing to see me and try to help in any way he can. In the Emergency Room they did more labs, which didn't show anything abnormal besides what usually shows up. A CT scan only showed severe constipation, which we pretty much already knew was a major issue. The UA showed no more blood in my urine which most likely means that the kidney stone I had before has passed. I know that my doctor was upset because he still has not been able to find any answers for me. Earlier he suggested going to St. Mary's to see if they could figure something out. So, they sent me over to St. Mary's. After we spent two and a half hours in the waiting room, we finally got back to the ER where they did an abdominal ultrasound, a UA, and more bloodwork. None of which yielded any conclusive answers either. To say that Justin, my doctor, and I are heartbroken and frustrated is the understatement of the century.
Justin and I finally returned home to Jackson early this morning. I ate the first food I'd had in 24 hours on the ride home which didn't settle well and ended up not being able to finally fall asleep until 6 AM. Justin went back to work this afternoon to try and get some things done. I am continuing to have issues with energy, pain, and problems with swallowing. I called work and did not go in today. Tomorrow is my day off. I am beyond frustrated, heartbroken and scared. No one has any idea as to why I am continually losing control of my body. I am forced to live with a quality of life that I find unacceptable. I am losing weight, constantly fatigued and in constant pain. My swallowing continues to be an issues and I am finding it incredibly difficult to eat any sort of food. This disease is taking over my life as well as my body.
I find hope in the fact that I have wonderful family here by my side. They have shown great concern and caring for me. I have the love of my life by my side, who has been absolutely wonderful, patient, loving, and supportive. I have a doctor who I adore and does the best he can to advocate for me and make sure I have the best care possible. Jackson is truly a good place with a lot of caring and compassionate people. My PCP and the nurses at JMC have been absolutely wonderful and attentive. You can't get care like that very many places. I have hope to have a future with more pain control, quality of life, and happiness. I look forward to the beautiful memories I have with the people I love the most. For now, I do the best I can to maintain what I have and hope for better days ahead.
That's really all I can do.
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