It has been a crazy week for my family. It all started on Friday evening when my husband hurt his back while loading my wheelchair into our SUV. Thankfully I have been feeling relatively better than normal and was able to care for him over the weekend. Thankfully his back was feeling better by Monday, because my body was wearing down and my pain was increasing. Just as I began to think that life and our roles of caregiver and patient were returning to normal, I had the rug pulled out from under me. Around 3AM Tuesday morning my husband woke me up to tell me that while getting ready for work he began coughing up blood. I leapt from bed, brushed my hair, and threw on some clothing and without hesitation I took him to the ER. Whatever pain I was in didn’t matter, my only concern was my husband’s health. After only a few short hours of testing the hospital decided to admit him for observation and more testing. At this point my body was screaming for rest and my husband was fine with me going home to take a nap until he was settled in a room. The reason we were both okay with this decision was that physically he felt fine.
After a short nap, I received a text that he was settled in his room. The surprise however was the type of room that he was put into. He was put in an infectious disease containment room, because apparently coughing up blood is enough for them to suspect a patient has TB. At first I worried that they weren’t going to allow us to visit him, but that turned out to not be an issue after all. On day one my daughter and I had to wear masks and gowns to be permitted in his room.
Today the hospital loosened the restrictions a bit and we only had to wear masks. This made for a more pleasant visit, as the gowns made us sweat like piggies!!
So far every test is proving each of their theories wrong. What he has is a cavity in one of his lungs that is bleeding. Until this evening they believed that it was being caused by a bout of pneumonia, TB, or cancer. None of these conditions fit with his symptoms and it has been driving me crazy. Finally this evening a doctor suggested that he could possibly have Valley Fever or MRSA. Now these theories make sense!!! Unfortunately, because they reported my husband as a possible TB patient, he will have to stay isolated in the hospital until all the tests come back negative and the state is satisfied that he doesn’t have it. The upside to this is that the hospital has plenty of time to run more tests and to find the real problem.
This week has opened my eyes to what life is like for my husband. For years he has had to deal with never knowing if one or more of my symptoms were just part of my conditions or if they were something else. For years he has had to deal with my doctors making multiple incorrect diagnosis’ before landing upon a correct one. For years he has had to live and deal with the uncertainty of tomorrow. While I have always been frustrated by these things myself, I never really thought about how hard it was for him as well. Now that I am in his shoes, I want to scream. I want them to figure out what is wrong with him! I want them to fix him!!! For the first time in forever our plans for the next few weeks don’t depend on how I am feeling, but rather they depend on what is wrong with him and how it will be treated. I now know the frustration that he has had to deal with since I was first diagnosed with chronic pain. But most of all I understand how maddening it is to know that there is something wrong with your spouse and to not have any answers! Plans can be cancelled or rescheduled, but nothing or no one can replace my husband. My heart aches when I think of how long my husband has been in this situation with me, how long he has lived with hoping that my doctors would get the right diagnosis or that they would even be able to help me. The hardest part for me is knowing that there is nothing I can do at the moment except to trust his physicians. This is difficult for me when I consider how many times my doctors misdiagnosed me or made life altering errors during surgery. I am terrified that his life is in their hands. If it weren’t for my faith in God, I would be a basket case. I am praying for answers, for my husband to be healed, and for my sanity to remain in tact!
My conditions have limited the amount of time that I have been able to spend in the hospital with him. I wish I could be with him all night and day. For now I just pray that the doctors will find the real culprit and that he is able to return home soon. Not knowing what is going on is the worst. I am not afraid of tackling problems I know about. I will come up with several plans of attack and when one fails, I move on to the next. Not knowing the problem makes it impossible to create attack plans and is testing my patience.
I hope to have an update soon, but in the meantime prayers are welcomed and appreciated!
The Disabled Diva
Tagged: California, cancer, diagnosis, doctor, fibromyalgia, health, hospital, husband, invisible disabilities, mental-health, mrsa, MS, pneumonia, psoriatic arthritis, relationships, spoonie, tb, valley fever