Well when I first set out on this mission to start blogging again, I stated in my first post everyday that I would explain why. Well I haven’t done so because the reason is very personal. I told myself before I started on this, that I would include personal things but I needed to get over the whole people are actually going to read this blog instead of it being some private therapeutic form of blogging or writing. But maybe it is time to just bite the bullet and write. I am going to try and be as open as possible, but I am still trying to relearn how to write as if no one is watching. So here goes.

Something very scary is happening at home. My best friend of 17 years, the love of my life for 17 years is seriously ill. Normally illness does not bother me. It does not phase me in the least. And there is reason for that. I live with two very serious, sometimes fatal, auto-immune disorders; Lupus and Antiphospholipid Syndrome. I have lived with them for many years. As a result of them, I have been in and out of the hospital over the past, wow almost two decades now. I had to have a hysterectomy because of it when I was 29 and ended up having a stroke as result of my disease when I was 30 and a whole slew of other things. I am only 32 by the way. For the most part it doesn’t phase me. It is the cards that I was dealt and I play them to the best of my ability. Yes, I do have my moments where I curse and scream at the Divine because I have problems understanding, but it only lasts a few brief moments. I also had to very brave women in my life who also had to deal with chronic illness for all of my life and set a wonderful example. They taught me that no matter how ill you are, there is always something you can do and always someway to help and inspire others. I do my best to honour their memories by living the same way. If I can serve to inspire one person to be able to get through some tough situation by being an example, then living with these illnesses and the secondary disorders that they cause, has been more than worth it. At some later time, I may post about the trials I have had and continue to have living with it, but not at this time since this post is not about me, its about the person I plan to spend the rest of my days with.

This story starts on Halloween. During my show that night, I started to have symptoms of another stroke (since I was 19, to date I have had at least 9 TIAs and one CVA). So off the the hospital I went and spent the next four days there. All was well and life continued as normal until November 7. The day prior, James had sudden onset of chest pain, muscle spams, could barely walk, shoulder pain, couldn’t lay down among a whole list of other symptoms. This is a man who has never been sick a day in his life. In fact, his job is to take care of others who are sick and dying. He is a Resident Care Aide and Community Support Worker. By the Friday, his symptoms had gotten much worse. On the pain scale, it was over a 10. So I had finally convinced him to go to the hospital. Well the ER wasn’t that much of a help. They gave him some Demerol, told him to pee in a cup, gave him an Rx for Tylenol 3s and Flexerol, and then sent him home. They didn’t even wait for the results of his lab work because they thought it was a simple muscle spasm that had gotten out of control. They told him to follow up with his dr the following week if the pain didn’t get better by Monday. They also told him that if anything showed up in his pee, he would get a call.

Well Monday rolls around and he is still in pain. He hasn’t been able to sleep in days despite medication. In fact, the only time he can sleep is for 30 minutes here or there while sitting up on the couch. So he phones his dr’s office and makes an appointment for the Wednesday. Since we had heard nothing from the dr, we assumed his lab results were normal. Well you know what they say about making assumptions…

It is Wednesday (Nov 12) and time for his appointment. His dr informs him that their was blood in his urine (why on earth did they not call before hand who fucking knows!). They did not find any white blood cells in his urine however, so its not a UTI. The dr figures though that it could be kidney stones as it will cause blood in urine and thinks its not serious or something to be concerned about. However, just to make sure, he sends him to the hospital for a bunch of x-rays, blood work and another pee test and tells him to see him next week. Also in these last 5 days, James started to cough up blood, but when the dr listened to his chest, it was clear. So James made an appointment for the following Wednesday and headed back to the hospital for the follow up tests.

Well, he saw his dr this past Wednesday (Nov 19). When he gets there, he overhears that they lost his chart. However, again we had assumed since the dr never called him to come in earlier that all of his tests were normal. He goes into office. The dr gets him to bend this way and that, James tells him the symptoms are still there and he is coughing up blood more frequently. The dr checks his blood pressure (as high blood pressure can also cause these symptoms) and everything appears normal. The dr told him that his test results were normal, nothing showed up on the x-rays, it is probably a spastic diaphram. Well that is something we can live with, it should fix itself in time, so the dr said.

The next day, we get a phone call from his dr. I answered the phone and in a very concerned voice he said who it was and asked if James was home. I replied I was not sure, can I take a message. So he said it is imperative that James phoned him that afternoon. Hearing that and the urgency in his voice, I told him to hold on and I would see if James was home. He was and I handed the phone over. When James got off the phone he told me OOPS the tests were not normal, there is still blood in his urine (his blood work was normal so no infection) and they found something on the x-ray. However, they didn’t get a clear picture of “it” and he needs to get back to the hospital ASAP for another round of x-rays and more pee tests. So he had that done yesterday.

And now we wait. I am used to waiting for test results. But with chronic illness, that is part and parcel of it. It doesn’t bother me and I don’t get worried. Well, I am worried. I am the type of person I NEED TO KNOW. Well I pulled up my handy dandy web browser and began to search out his symptoms. And of course cancer keeps popping up over and over again. Of course UTI poppped up but that is only if there is an abnormal white count. And well they have done enough tests to rule out UTI and they have still yet to put him on any type of medication, so of course it leads anyone to believe it is very serious. Well the symptoms alone would say that it is. The part I am finding most difficult here is how to be supportive. I am a very logical creature, where James is a very emotionally driven creature. It is very very rare for me to react to something immediately. My normal reaction is to go hmmm ok. Then I think about it and decide how does this affect me. Where James is scared shitless especially since he has never been sick a day in his life and now all of a sudden he is very very sick and it was sudden. He had been having other symptoms of other things for a few months but didn’t pay much attention to them cause they would just go away on their own if left alone. How does one take care of the caretaker? That is what James was born to do and he wants to continue to do that and put up this brave front that is okay with
everything, when I know that inside he is crying and shaking and afraid for his life. One second he complains that it appears that it doesn’t bother me and then when I do reach out and say look it is bothering me but until we have answers, my answer is going to be hmmm. Because nothing I say is going to change the fact that these things are happening to you. My words cannot take them away. But do know, that I am very concerned and worried on a mental level, he tells me everything is fine and I don’t need to worry. I have great empathy. I have been through so much shit in my life that there is nothing somebody can tell me that I do not understand on some level. However being empathetic does not mean being emotional. So many mixed signals for the man. However, he was finally able to open up a bit today and say that even so he does want my support he doesn’t know how to accept it as he is the care giver and is suppose to support me during my many flairs, not the other way around.

So now we just sit and wait. I say though that if they fuck up again this week when he sees his dr again, I will make heads roll. So if there are days I do not blog, it is being my mind is otherwise occupied. I will keep updating the situation as more answers are given.