where do i go from here??

I am not a depressed kind of person…never have been. Even when life was at its worst, I still made my way into the world each day and found meaning and happiness among people. There was only one occasion which changed this-morning sickness. I tolerated morning sickness for four full pregnancies and one that ended at sixteen weeks. For the pregnancies I was sick the entire time and still worked as an anesthesiologist. Working made the time pass faster, as I was sick 24/7, even while sleeping. It was truly miserable and during the last pregnancy, I actually asked for an antidepressant because I was so sick I just wanted life to end. I was prescribed something but then never took it for fear of harming the fetus! With each pregnancy, delivery immediately sailed me into immense happiness and tremendous energy. I resumed everything from running up and down stairs to running outside to running my home and running to work. Postpartum depression? What in the world was that?!

With the onset of Sarcoidosis, and then a few months later cancer, however, I did become more profoundly depressed. I found myself questioning the point of everything because the cancer surgery affected my quality of life and happened so suddenly. Then I learned that Sarcoidosis in the brain (Neurosarcoidosis) does cause depression. This was the first time that I truly understood how debilitating depression can be. Fortunately, I required a drug for neuropathy which also helped ease the depression, and I was quickly transformed into my old happy self. I completed home projects and engaged in blogging and in managing my new store and was quite satisfied for the past year. The projects took my mind off of things and prevented me from thinking too much. In addition, there was always something to look forward to medicinally, such as being approved by the insurance company for a new infusion. In the back of my mind I was always sure that the next medicine would be the one that worked.

Recently, however, I was taken off of the major infusions that I’d been receiving, as they did not seem to be working. My neurologist also thought that it was time for a referral to family counseling as a way to help us cope with my now officially chronic illness. This kind of shocked me as I wasn’t sure what the point of talking to someone would be, especially for a bunch of teenagers who hate to go anywhere with their parents, much less to a counselor. But I felt that it was incumbent on me to try the recommendations of the doctors that I love and trust, and so I started counseling.

We have not yet included family members, as apparently I have enough to talk about myself for now. I am finding that feelings are being brought to the surface which may be a good thing…I don’t know.

But what I’m really bothered about is the fact that when one is told that things don’t look good, yet they cannot be given a time frame or an idea of what to expect as far as further deterioration, how can they continue to live? I mean, if I were told that I have 3 months left, well ok, I could deal with that and structure the rest of my time with meaningful things.

The only barometer that I have right now, with this strange disease that affects everyone differently, that doctors do not fully understand, that enough research has not been conducted, is a comparison of where I am now to where I was last year, and a few years before that.

Only then do I see the insidious deterioration that has taken place. What started as shortness of breath and a declining ability to run has now transformed me into a person on disability who is for the most part sedentary most of the day. The fatigue has become disabling, the pain more frequent (and unchanged if not worse), and most of the quality of life issues are still there and slowly worsening.

So now I don’t really look forward to doing projects. For one, I cannot tolerate the physical part of painting a wall or even just organizing myself to complete a project like that (something that once came so naturally and that I could easily finish in a day).  I don’t look forward to remodeling or refinishing or designing anymore, so what’s the point?

What is the point of new clothes, even, something that used to make me feel so good? What’s the point of doing anything to better what we already have? I am cooking and cleaning as I am able during the hours that I have more energy, but it’s for everyone else, certainly not for me. Because, sadly, this illness has already ended my “life.” That is, my meaningful life. Is this how old people feel when they retire or finally move into assisted living?

So what IS the point and where do I go from here? And what if I still have a long time to go in a perpetually deteriorating state? Don’t get me wrong, I am still functioning well enough to enjoy the antics of my kids and dogs and I do enjoy my friends when I’m able, but seriously, what is the long term point?

I guess I know what I’ll be discussing next with the counselor…

M