I have days where I think “this is it – this is as good as it’s gonna get”. Usually this thought creeps in when doctors don’t know what to do and they don’t have anything new for me to try.
Man that can be a depressing thought. This. Is. It.
And then suddenly, something comes up that gives me hope again. We find a new treatment or I get a new diagnosis (which means I can try other treatments). Hope in the possibility that something might help.
Here’s the deal though – not all options work out. And when it doesn’t, oh the heartache.
And I’m back to “this is it”.
Right now I have 2 paths I’m going down and both give me hope.
1. Psoriatic Arthritis (PsA)
I have an appointment at UC Davis in early May to get evaluated. I definitely have psoriasis – that’s a given. It’s just another example of doctors who miss the mark. I’ve seen several dermatologists – they missed the psoriasis for a long time.
And because I have multiple tick diseases, everyone stopped looking at other arthritic type diseases.
We just learned that 30% of people with PsA have had Lyme. Why didn’t I know this before? Because no one talks about it.
2. Cranial Cervical Instability (CCI)
CCI is when the ligaments in the neck are loose. And mine are. There are very few doctors who treat CCI and most go straight to fusing the spine.
When I first heard about it, fusion was the only option. My doctor referred me to a center in Maryland where that could be done.
Fortunately that center wasn’t taking new patients so my doctor referred me to a center in Colorado. While waiting to talk with that clinic, I found a clinic in Florida that has non-invasive techniques and a very high success rate for good candidates.
Turns out – I’m a good candidate! We are working out the logistics but planning to start treatment in late May.
I’ll write more about both of these – but for now, I want to get two points across.
- Just because you have a diagnosis doesn’t mean something else isn’t wrong. Don’t settle for what doctors tell you – YOU know your body! If you think your doctors are missing something – keep asking questions and keep looking for answers.
- Today there might not be a treatment for you. But tomorrow, you might learn about some doctor on the other side of the country who can help you. God makes a way. He’s that good.
PhilippiJoy 
I feel you! Sometimes I think to myself, IF this was the best it’s gonna get, am I ok with this? Can I learn to work with this? Obviously I’m still around so I am ok with having hope still. It has certainly been true in my learning that when you’re a mess and you start figuring out the why, there are several going on and it takes a LONG time to filter them away from one another. So far the only use for drs has been the access to all the tests and labs and pointing in a general direction. On occasion Drs can have access to some neat therapies, but so far, Drs are terrible diagnosticians. I wonder too, who set the peramiters in what “good levels” are in bloodwork, and has anyone challenged that they need to be updated, or that maybe good or bad each person may need their “levels” to be different than the next guy for optimal living. You do loads of research and work to find more root issues and diagnosis that shockingly, amazingly, you check every box for, and still, they cock their head to the side and say, no..I don’t think you have that. They will deflect until several appts later when they decide, well … Maybe, but we don’t really know, it COULD be, but we’re not saying it is. Chicken caracasses.
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Reference ranges are set by the individual labs and are most often the values 95% of the population falls into.
Which means you will only test outside the range if you are in the sickest 5%. How stupid is that?!
My Kansas doctors use a lab that identifies “optimum” range, ok range, not ok range and really sick.
That’s how it should be. If your tests have a high and a low – you want it to be in the middle. If it’s on or close to either border, you have a problem!
But doctors just say “everything normal”.
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