I’ve never really talked much about how the testing process is. I have just been dealing with it for 3 years but there has been a lot. I’ve never talked about how tiring it gets and how you mentally have to prepare for everything.
I just looked at my records from my local rheumatologist to see how many tests were ran. This was not how many times I was poked or got scans done. It was just how many results things brought. I gave a lot of blood viles though. Here is the big number it was 146 results. Read that again 146 results and still faced with not enough answers.
I can’t count the number of results that are taken through my Primary Care Physician or Cleveland Clinic. When the pain first started I was still walking by myself and doing ok just dealing with slight overall pain. We tested if I had the parvo virus which I did at sometime and it was a high marker. So at first we were all under the impression this is what I had and it would go away within 3 months. I had HOPE. In the hospital my discharge doctor told the interns I was presenting classic signs of Lupus so from hearing about Lupus and getting tested for Lupus and then to hear oh never mind it’s a short thing. At that time my ANA markers was negative at 1. Over the years it keeps going up to 1:80 which I’ve been told some doctors would diagnose Lupus at that but mine haven’t.
So after all these things came back negative it was well, maybe it’s this or this. It went on forever. I quickly realized this wasn’t a process of what it is – it’s a process of elimination and well here are all the things we know it’s not. After I hit the 3 month mark my doctors said unfortunately this is chronic but we will try to find the causes.
We thought the medication would really help. Nope. As I got to know my local rheumatologist more we had some pretty honest/hard conversations. We started realizing there wasn’t much to do except keep doing the auto immune and inflammation blood tests every 3 to 6 months to see what was happening. We tried steroids with some help but not enough. We talked about how water therapy was making me worse and I couldn’t do it anymore. We talked about how now it was important I use the scooter and walker and wheelchair at all times during the day. One visit we had a discussion and we asked point blank – so I don’t have lupus or sjogrens (we did very specific testing sent to a lab in New York) the answer: nothing is ever off the table with you right now- just because it’s not showing significantly on your tests doesn’t mean your free. It can take 5 years or more to find an auto-immune diagnosis.
So here we are 3 years later with the same answers – we can’t confirm Sjogrens or lupus or whatever else is happening. It’s frustrating to keep getting referred to numerous specialists who run similar tests and say something else is definitely going on. So when you’re dealing with specialists and experts in the field and they are saying you’re complex but we will try to get to the bottom of this. I did put in an application for the Chasing The Cure Tv Show and I got through the first few rounds and never heard anything. I was hoping that could be a way to get answers. I don’t know what’s next or where to go to next. I like Cleveland Clinic and my rheumatologist does a great job with my Fibromyalgia. As more new symptoms keep happening she has been saying something else is going on. I’m thankful for technology because I’m able to message her and keep her updated and ask what to do. She is my only rheumatologist because after my local rheumatologist retired, the doctor who took over was full before we got the letter to switch. So we were searching for a rheumatologist and my family doctor’s office called numerous rheumatologist all of which replied “she is too complex for me to take on or I don’t have anything new to offer her.” So that makes you feel really good – not. That was a pretty rough time for me. It was this winter when it happened.
So if you are in the middle of a testing journey, I don’t have much advice because it sucks there isn’t really another word to use it just really sucks. It’s not normal for phlebotomist to recognize you and remember you need the baby needles and that I have difficult veins. It’s not normal to get so many tests run and so many doctor appointments. I went from going to the doctor for yearly checks and not many sicknesses. Now I see a doctor at least 1-2 times a month. It depends on the schedule of 3 months to 6 months sometimes I get doubled up. There are months where I have 1-2 every week in a month. It’s overwhelming. I blogged once that having a chronic illness feels like a 2nd job because of everything you have to do or go to.
So I didn’t go into every single detail about the testing process because let’s be honest you would have been reading for a long time. If you have any questions about the testing process let me know.
This is a picture from 2016 after some blood draws like I said I don’t have great veins.
“Be still and know that I am God.” -Psalm 46:10