Health Update: Starting Remicade

Well, I wrote my new rheumatologist, who I DO like, though we haven't had more than one appointment in person. In this game, if you LIKE a doctor the FIRST visit, and it continues that way, you should count yourself LUCKY.

Many doctors end up with a "god" complex. I suspect that it is somewhat necessary to maintain sanity. If you think about it, all doctors are fully responsible for your health. They need to make right diagnoses, they need to choose the right medication for your disease and your other conditions....and face the thought that they might possibly cause the death of a patient. It might not even be the doctor's fault---I had many patients who were taking herbal things that do not mix well with modern medications. Believe it or not, medical providers need to know what vitamins, supplements and other remedies you use. St John's Wart for example mixes BADLY with many drugs, as well as many other herbal things.

Anyway, I wrote to my doctor. We are going to go ahead and start Remicade. I am less apprehensive about it than I was. I just...I dunno. I was really worried about taking it. Partially because I need to take methotrexate with this medication, and I thought, oh, great, even if I get well, I can't have kids. However, the doctor and I have a plan in case I respond well to Remicade, to do a different medication, so I could have children. At this point, it really doesn't matter.

Imagine, really, spending five and a half years basically being a child again yourself. Its awful facing the fact you need other people to do so much for you, help you get places.

Should I manage to go back into home health, or whatever nursing I might go back to, I sure will have a different view of medical care. Ignorant friends and family, ignorant medical providers, the insane stupid feeling one gets when needing help with stuff one has been doing on their own for ages. It would be maybe better if one was elderly---feel that you have had a life, it was expected. Being young makes it hard. However, I've learned not to belittle anyone's health struggle, and I am sure it not easy to be older and be ill, either.

Overall, reader, maranatha. Amen

Health Update: Reality Sets In Yet Again

Welcome to the World.

Not really....more like Bette Davis, the classic film star, saying: "Get ready, its going to be a bumpy ride".

My health updates used to be just "RA Update", but as you go along with these conditions, they tend to multiply.

Part of this is because the human embryo develops into three layers, ectoderm, mesoderm and endoderm. These three things then grow up and differentiate into more things---the stem cells of  an infant turn on and off certain dna markers to become a liver cell, an eye cell or a joint lining cell. Because of this, my body sees the joint cells and my eye cells as intruding enemies. Who knows what it will pick next.
I have had to use steroid eye drops for my anterior uveitis (aka, iritis). There is a LOT of confusion about this to other people. My eyes are nearly constantly being attacked, especially the iris, the colored part of the eye, and the muscles about it and the lens. As the iris contracts and dilates with its swollen, irritated self, it grinds at the white blood cells "fighting", causing more irritation. The squashed white blood cells burst, leaking contents about, the muscle cells erupt, dumping contents. These proteins floating about, will lead to a worsening of my eye condition. My light sensitivity is NOT worsened by my wearing dark glasses all the time. In fact, I have been ordered TO wear them, as not wearing them will guarantee a worsening of my conditions.

However, along with the dark glasses, I HAVE to use steroid eye drops. If I don't, I will go blind faster. The cell contents dumped will cause my eye outlets to be plugged, increasing eye pressure and crushing my retina/optic nerve, plus other damage done from crazed immune cells. If I use steroids, I can slow this, though the steroids "can" cause increased pressures---which I have had minor issues with. The steroids can also cause cataracts. My worst eye has had cataract for a while now.

The cataract is bad enough now that I need surgery---I cannot see clearly more than about 6 inches in front of me. It is better news that some things could be, and there is also a decreased chance of my facing glaucoma (increased eye pressure) after having the cataract surgery. No, I don't want it, but after facing the ideas that have terrified me overnight, I am glad that it is such a minor thing.

Again, dear reader, hold me in your prayers. My run in the race is as slow as crawling on the ground, bleeding and sore; my heart is weary, and my soul is tired.

Health Update: The Good Samaritan

I went to my eye doctor this last week for a one month's follow up on my OCT scans. This looks at my retina, the blood flow and the depths of the retinal tissue. Pretty cool device, actually. My eye doctor, who knows I am an RN and LOVE all things science-y and geeky, had me sit and look at my own scans. Really cool. Especially if it was someone else's scan.

My eye scan went from having a red triangle of thinning retinal tissue to a yellow area---best being green according to the machine.

It is so hard for me to face these eye things. So far in my little life, most of my nightmares have actually happened. Or are threatening to happen. I was always scared of having a chonic ailment because my sister had one when I was growing up. Evey symptom I have had since childhood has turned out to be a health problem. My inability to run, for example. Most of my childhood I could walk faster than I could run. I would be running for all I was worth, running through mud and waist deep water, and still be easily caught in a game of tag. The only thing I had in a game of tag was the ability to make quick turns--since I was barely moving. Randomly, though, I could actually run fast. I remember being 15 and being such a good runner that we almost went out for a track team at the high school. I remember thinking it was strange I could run so fast.

Then the eye things. When I walk into bright light, I get a moment to several minutes of stabbing pain. This is NOT caused by actual light sensitivity, but it caused by my swollen iris muscle being infiltrated by immune cells. The iris contracts and dilates to deal with light levels. When it does that, being swollen and full of cells that should not belong there, it grates as if sand was in the tissue. Instant pain. I had that rarely as a kid, like every few months. I would walk into the dark bathroom, flip the light on and WHEW! instant flash of pain.

I've had no RA or psoriatic arthritis treatment since the virus outbreak as the rheumatologist wanted people to not treat it if at all possible. So now I am in this holding place of not knowing whether to take treatment or not. Doubting it helps anyway...

It is what it is. I just wish it wasn't happening to me.

I figure I will lose my nursing license now. I just got a new three year license, and I need only 96 hours of "work". The problem is that my volunteer place closed down to the volunteer crowd. At the rate that this lockdown stuff is going, I am not sure I will have enough time when it comes back--if it ever does. It is really hard for me to make it anyway...and I just don't know if it matters anymore. And since I am such an unreliable volunteer anyway, no other place is going to take me. I feel so guilty about being unable to make it to the one place....
I wanted to keep my license so when I got "well" I would be able to go back to home health. Let's just face facts. I don't think I will ever be well enough to work again.

I am tired of trying all day every day, of being told by those who have no idea the non life I have that I should just try harder, of being forgotten by everyone. Of not being alive. Of being offered fake hope by everyone.

One thing is for certain. You learn quickly who will stand by you in illness...and who will abandon you by the side of the road to die. The Good Samaritan always struck me as a strange parable. But people really will leave you by the side of the road....

Maranatha anyway, and I am sorry that I haven't been able to write more uplifting stuff, or much bible study type things. I've been in a pretty dark hole, literally and figuratively for a long while now....and unless my eyes clear up to the point I can study again, I expect to remain in a dark hole. If you think of me at all...ask God to relieve my eyes at least so I can work on this blog as it is supposed to be. Not the darker side of chronic illness, but the lighter side of the darkness of chronic illness with God.