At Least 2 New Diagnosis

It’s been a long few weeks for me with doctors and physical therapy appointments almost daily. I know y’all have been following me as things are progressing within my chronic illnesses journey. I’ve had several tests done MRIs, over 30 vials of blood draw, CT scans, you name it I’ve most likely had it in the last few months. Each of these tests leads me to yet another doctor and then another set of tests. 

The news, whether good or bad at this point I am not truly sure, has led me to adding at least two new illnesses to my ever-growing list. I went to see a rheumatologist and was officially diagnosed with Sjogren’s, lupus and a rare form of arthritis called inflammatory sacroiliitis, which is where arthritis forms where the hips meet backbone and pelvic bone and becomes inflamed to the point of no relief. I was prescribed physical therapy which I went for almost four weeks and graduated early because I had progressed as far as they thought I was going to with my condition. I am able to go back if I feel like I need it, but I have all the equipment at home to continue my exercises. 

I am thankful that I was able to find a specialist who could diagnosis me with what was going on with me. I have felt like for a few years that I had lupus, which you know I have multiple sclerosis, and the symptoms were not just adding to up to that. As I researched more and more lupus kept coming up. The thing is that if you have multiple sclerosis, you are not supposed to have lupus too. Those two autoimmune diseases affect different parts of your body, your brain, and your nervous system but they don’t usually coincide with one another. I have told a few doctors what I found in my research (which by the way you have to do if you want to truly want figure out what is going on with you and what to tell the doctors to investigate) but they said that there really was not way it could be that. 

Finally, I was able to prove that my symptoms were not multiple sclerosis related that they were coming from somewhere different inside my body and brain. The new doctor finally believed me that there was something drastically different about what I was experiencing. The doctor was able to run the right tests to show that I had lupus in fact, she also discovered the inflammatory sacroiliitis which came a surprise to me and her as well. Now I’m taking two new medications to help combat both diseases which are helping. As my list of medication grows and my list of diseases grows, I am faced with moving forward and figuring out this life as I know it.

I am actually hopeful that things are going to turn around for me as I am getting help in all areas of my chronic illness life. I have specialist that all deal with each disease that I have and I have a primary care doctor that cares and she is able to coordinate with all the specialist and get me in to see them when needed and to pass along the notes from each doctor in a condensed manner so that every doctor is able to know what each other is doing and what medication they are prescribing and how things are working for me overall. I am thankful that I have been able to find all these doctors who are all willing to listen to me and not make me feel crazy (which was the case at the start of this journey). 

That is something I want you to know, there are good doctors out there so don’t give up. I know it is a frustrating journey to find them but when you do it makes all the difference in your chronic illness care. It is not an easy road to find the right doctors, but don’t give up! You are allowed to doctor shop (I know people think that is a bad thing) and find who fits your personality, your disease, and treats you how you want to be treated. I know you feel like you want to give up but don’t. Do the research and find a doctor who is willing to listen to what you have found and is willing to test you for that. I go to my doctors all the time and tell them I was using web MD and Dr. Google because I felt something was off and I want them to look into it. Now I am sure they aren’t always happy that I use those, but at least they listen to me and talk me down or actually test me for what I found. Those are the type of doctors you need and you need to fight for. 

So, I say all this because I understand what you are facing. I know how angry you can get when you feel like no one is listening to you. I know how crazy you feel when no one will believe you and I know you feel guilty when you doctor shop trying to find answers. Know that I’ve been there for most of my life. I started seeking answers when I was very young, and I will tell you that people don’t listen to children but I fought at every turn. It was not an easy road, and I got turned away more than I got help but now I know it was worth it. I was called a drug seeker, I was denied care by doctor after doctor, I was labeled a doctor shopper ({which I was because I wanted and needed answers). Trust me I’ve been through it all, so I am here to tell you there is light at the end of the very dark, winding, scary tunnel that is our healthcare system. Please reach out to me and let me help you navigate your journey. I am always around if you just need a shoulder to lean on, cry to, vent to, and my favorite someone who will listen to you yell about your frustrations. I promise there is a way to find the doctor and diagnosis you need.