Whoever said 'no news is good news' clearly hasn't lived in this kind of limbo for this long, with no real end in sight.
I'm back off the Pred. I got my results back from the blood tests, and honestly they just raise more questions than they answer. So the Dr has taken me off them unil I see him on Tuesday. Am feeling rather a lot like a guinea pig at the moment, with no clear plan. It should be noted that within a day of starting pred my eyesight began to improve. I was on it for 4 days at 50mgs a day. Blood test was taken at end of Day 3, after 150mgs.
Within a day of going off Pred, the headache returned and my eyesight went back to being pretty bad again. Headache is in the same spot as last time, originates in my left temple, takes over upper left quadrant. Is consuming, overwhelming. Some medication tones it down (not the vision issue) for 4 or 5 hours, but it comes back every time, without fail.
It is my understanding that for Temporal Arteritis, one would expect an
ESR reading of over 50 (based on a woman under the age of 50). A normal ESR rate would be under 20. Mine was 39. So it's probably not that (though the pain is the right type and it responds to prednisone). But that's good news. 38 means something's going on, which of course we knew, but for heaven's sake,
what? All of my inflammation markers (WBC, CRP, ESR etc) are at least twice where they ought to be.
And nothing to rush any Doctors into action. That hsoudl be a relief. Excpet, I'm here, living this. This headache is not going away and I can't drive. I can't see properly. Forget the pain in the rest of my body (and it's hard to believe that I'm able to at this point), I feel like I can't focus on anything but this headache.
How am I supposed to function like this? I get that it's a 'non urgent' result. But it's urgent to me. It's urgent to my family. All I want to do is lie down in bed. I want to take Mersyndol or valium (or better yet, both) and sleep. And Joel does what he can to let me do that when possible.
But for most people, a day in bed, catching up on sleep while the husband takes the kids out means rejuvenation. You are grateful (not that I'm not) for the rest and recharged, ready to take on life again. Yet, I know that it doesn't matter how much rest I get at this point. I'm going to feel exactly the same when I wake up. I'm going to feel just as sick, just as much pain and just as unmotivated.
So I tell myself that there's no point having the rest or having the drugs. There is too much to do. Children to parent. A husband to try to connect wtih. Friends to talk to. Articles to write. Ideas written on scrap pieces of paper everywhere. Appointments to make, bills to pay. A rental inspection coming up in 3 days(despite me being in hospital for the last one they gave us a breach notice for not cleaning ceiling fans, oven not cleaned,washing window tracks or having the weeding done, even though the lawns were done). We were given 7 days to fix it even though I still had pneumonia.
But I can't. I can't push through it at the moment and just get it down. This headache is leaving me constantly dizzy, sensitive to light and noise (but is not like the migraines I've been having for 20 years now) and I can't get anything done. And Joel is one man. How is he supposed to acheive everything when there is also a 60 hour work week and 2 children?
I like words. I like to talk or write things out, clarify them, work through them. But for the life of me I can't find a word to adequately describe my frustration at this situation. Or my desperation. I honestly feel hopeless. I'm desperate for help, but it's the hlep only a diagnosis and a plan and a Dr who says "I understand" is going to give me. And I'm afraid I'll never get that.
Someone, somewhere asks me every day how I'm feeling. And I have no damned idea what to say. I honestly don't know what the polite response is. "I feel as crap as I have felt for the past 10 months, thanks for asking?". "I feel worse than I've ever felt, how about you"? What's the right answer to "You look good today, you dont' look sick. You're obviously on the mend". "Are you getting better yet?". "Oh look, you're not limping today, you're better" or "Weren't you limping on the other side yesterday?"
I don't know if it's just my paranoia, but I feel as though everyone is of the same mind - I'm a melodramatic hypochondriac, trying to get attention. I don't look sick, so I can't possibly be. How many people really have that many illnesses (none of them life threatening, but Diabetes, PCOS, Bipolar, Fibromyalgia, Arthritis and..whatever this autoimmune thing is). I want to feel like the old me who just a few months ago could rant about an injustice the same day as she could swoon over Edward Cullen or Shemar Moore and race after the children before going home to have my way with my husband. I want to be able to sort out my washing and cook dinner and take the boys to school and talk to the teacher. And I feel like every single person who knows me, or reads my blog is rolling their eyes at me behind my back. And there are some that aren't even waiting to do it behind my back.
And right now - here it is. What my head is really saying. "I feel sick. My body hurts, literally every single inch of it. I'm dizzy and I can't see you properly and I can't focus on what you're saying to me. I can barely focus on what I'm saying or writing. I'm scared that despite my house being good by most people's standards, my ass of a landlord (who was horrible to me in his last visit) is looking for an excuse to kick us out. that we will have nowhere to go. My Dr seems to be at best, passing the buck, at worst toying with me. I'm not better, despite how I look today. I'm on so many drugs I'm embarrassed and they are all working against one another. I'm on drugs to undo the damage being done by other drugs.
I just want to lie down. I want to take my valium and my mersyndol and I want to sleep. I don't want to die. I want a pause button on my children and my husband and I want to sleep until my appointment. And I want to pretend that I don't know that I will leave that initial appointment with nothing but forms for more blood tests. And no answers.
And as far as I know, I'm never, ever going to feel any better".
Tell me, please. I'm actually asking. What am I supposed to say?