This has been one of the craziest weeks of my life. Read Finding myself in his shoes to understand how it started. This all began around 3AM on Tuesday and by Thursday we still were without answers as to why my husband was coughing up blood. Thursday was not a good day. Physically I was wearing down, however I was holding up emotionally until we were informed that my husband would have to remain in the hospital until sometime next week. If that wasn’t bad enough, we were also told that if there was the slightest indication that my husband did have TB (Tuberculosis)that my daughter and I would have to be admitted and be forced to go through the isolation and testing protocol as well! The thought of being held captive in a hospital made me sick to my stomach. On Friday morning his doctors were still saying that they wouldn’t be releasing him until Monday or Tuesday. We were pleasantly surprised that a few hours later a doctor came in to inform us that since every test for TB was coming back negative my husband could go home as long as he agreed to being confined to home isolation. So he signed the home isolation agreement and we were on our way home.
Why isolation? In the state of California doctors must report every patient that coughs up blood to the state as a possible TB case. Protocol is then to isolate the patient until the state is satisfied that the patient does not have it. Because his doctors had enough evidence of him not having TB he was permitted to continue his isolation at home. In the meantime we are still waiting for his other test results that should provide us with the real reason he has been coughing up blood.
This has been a frustrating experience to say the least and it isn’t over yet. He has a few doctor appointments next week in which we should have his other test results. In the meantime he is not allowed to be in public until the state of California says so. This wouldn’t be so stressful if I believed that government workers were competent. I have no idea how long this process is going to take, and I just have to accept that. My husband being confined to isolation is just one of my stresses, we still don’t know what is wrong with him. One would think that by now I, of all people could deal with having to wait for test results. Wrong, I am finding myself to be more impatient than ever.
This ordeal has given my husband and myself a little more insight to what the other has been going through for the past 14 years. My husband has experienced what it is like to be imprisoned by his body. Because of what could have potentially been his diagnosis he was forced to remain in isolation. The only difference between his experience and my being held prisoner at home because of pain is that he wasn’t in pain. But he totally understands my battle. Your mind says “get out and live life”, and body says, “sorry sucker, your aren’t going anywhere!!” It breaks my heart that he has had to experience long hours of boredom and loneliness. One thing is for sure, he definitely understands my frustration of wanting to get out and not being able to. On the other hand I have experienced the frustration of him not being able to leave his room and now house. I am feeling what the past 14 years must have been like for him. I must admit that I am not handling it as well as he does or has. I swear my husband is a saint to have dealt with so many years of never knowing when or if I could leave the house, let alone my bed. I guess if his freedom didn’t depend on government employees I would be more patient. Of course he admits that he has had the advantage of not living in pain himself while dealing with my captivity.
His being released to home isolation couldn’t have happened at a better time. Because of additional pain from having to leave the house un-medicated, and spend hours out on a daily basis, which is something my body can’t handle, my pain was so intense that I spent the past few nights crying myself to sleep. This (Saturday) morning I awoke with tears in my eyes. My body is rebelling in an awful way. Thank God my husband is home, because there is no way I could have handled driving to and from the hospital, let alone spend anytime there. I prefer to not medicate during the day unless my pain is extreme and I am unable to cater to my bodies demands of rest, but not medicating this morning was not an option. And this is where my frustration lies. I am frustrated and pissed off that my body won’t allow me to care for my family when they need me the most without punishing me severely. It’s not fair!!
If you are so inclined, please pray that we receive answers about the cause of bleeding next week. Pray that I will continue to swallow my pride and allow those who have offered help to help! Thankfully several people have offered to drop off meals over the next few days which will allow me to rest and hopefully return my pain to its “normal” level. And most of all pray that whatever is wrong with my husband can be fixed. Here’s to hoping that we will have answers and a plan of attack by the end of next week!!!
The Disabled Diva
Tagged: bleeding, California, caregiver, degenerative disc disease, fibromyalgia, health, invisible disabilities, isolation, mental-health, MMJ, MS, psoriatic arthritis, results, spoonie, spoonies, tb, valley fever