On a Personal Note

Most of my blog posts are about awareness for invisible illness, social acceptance of disabilities, food allergies, and so on. But it is also important for me (as a person) to just let everyone know how I’m doing and what is going on in my world. It is very possible that this is arrogant on my part, but it’s my blog and I can do what I want. 🙂 Just kidding, kind of.

Well, I had a follow-up with my new Rheumatologist yesterday and sure enough, I do have Rheumatoid Arthritis (possibly Lupus as well). Some of the tests for Lupus were inconclusive, but everything for RA came back positive. They’ll be keeping an eye on the Lupus, but going forward with RA treatments. As for the Ehlers-Danlos diagnosis, I am still waiting for that to become official. She agrees that I “most likely” have it (I know I do, and I can tell she does too, but just won’t say it). She is insistent that I get genetic testing before she can move forward with an official diagnosis, even though I know that H-type does not show up on genetic testing and may not be covered by my insurance (we’re still working that out). Mine is a typical story though, one I’ve heard over and over on-line. People go years without a diagnosis, just to have every doctor shoot down what they KNOW to be true.

That’s one of the main reasons I’m doing what I’m doing! People just don’t know how devastating it can be to KNOW you have this debilitating disease and still have doctors question you. Just because we’ve sought help and answers on-line, does not mean we’re hypochondriacs. Just because we’ve spent countless hours researching symptoms, does not make us obsessive. Just because we’re relentless in our pursuit of a diagnosis, does not make us pushy patients. If we don’t stand up for ourselves, we eventually won’t be able to stand at all!

Ok, off that soap-box (for now). The other big thing that came out of my appointment was a prescription for mobility assistance. Yep, I’m getting a scooter! Not something I will use all the time. I have every intention of keeping attempting to walk for as long as my body will allow me to, but recent activities have been extremely difficult and kept me bed-ridden for days. So, when I told her about it, she agreed I needed that option. I have people coming to my house at some point to asses my mobility needs… yippee! Come see my messy house that I can’t clean because I’m sick! I have blankets I can throw over stuff, that will work, right? The other important thing is that my temporary handicapped placard is being upgraded to permanent. No more renewals and begging for a new one. No more waiting months for doctor visits and having him tell me that they really should just go to people that “really need them”, just to have him reluctantly write one for a couple months because I’m in extreme pain. Justification… I have to say, it is sweet.

Some other (smaller) things to come out of the appointment would be that she took me off of a med that was probably the cause of some severe dizziness. At one point this past week I actually had to be helped out of church because I almost fell over, fun times. My Sjogren’s isn’t getting any better, but we’re going to see how things go once my other treatment starts. I have to get a few immunizations before I can even begin the infusions for the RA. She also gave me steroid injections in my knees, which hurt like CRAZY! I’m hoping it’ll be worth it, because the next day it still feels like the needle is in there! Ugh.

I do have one other big “story” to tell, but I’m going to do so in a separate post. It was a pretty upsetting situation and I have had to collect my thoughts in a big way before posting about it. But no worries, you’ll get the full story very soon! For now, I wanted to give you a little insight into how things are going for me. Other than a very stressful situation (again I’ll post about that later), things are not too bad. Getting a diagnosis is always bitter-sweet. Knowing what’s wrong is always good, but finding out how they’re going to treat you can be daunting! Changes in medication, infusions, steroid injections, all kinds of “good times” ahead. I’ll make it through, I always have and I always will. For now, God bless and have a wonderful, pain-free day!

3 thoughts on “On a Personal Note

  1. Sickly Stardust says:

    There is nothing wrong with talking about yourself in your blog! I talk about every little thing in my head in my blog, and you’d actually be surprised how many OTHERS you help by being transparent and open about yourself. Especially in a blog you can do how much or little of that you like, since it’s sometimes difficult to find people who listen to people such as ourselves.

    I relate to so much of what you are experiencing. I have Juvenile Arthritis and have (obviously) had it sine I was a child. Any kind of arthritis is the worst. I’m sorry you were diagnosed with RA but I couldn’t phrase it more perfectly than you if I tried: “diagnosis is always bittersweet.” It’s so wonderful to FINALLY have a name for all the mysterious symptoms you’ve been suffering through for however long, to finally be justified and finally be told you aren’t just imagining it all.

    Also can definitely relate to the messy home. I’m a minor neat freak but I just can’t always clean when I want to because my body says NOPE. Slowly yet surely though I am learning that there are more important things that a tidy house, like not exhausting myself to the point of losing consciousness or triggering my illnesses and blah blah blah. When you’re chronically ill, though it’s annoying, sometimes we really just have to put ourselves first. And that’s alright.

    I enjoy your writing and I’m happy for you that you’ve at least got some answers. I always say the only thing worse than being sick is being sick and not knowing why.

    Best wishes!

    Liked by 1 person

    • Thank you for this I have got to get better at getting on here every day, but I find that the only things I do every day are take pills and take care of my kids (and sometimes eat). It’s good to know that people really do read my words and take them to heart, it’s incredibly important to me. Thanks again (((gentle hugs))).

      Liked by 1 person

      • Sickly Stardust says:

        I do read! I hope you continue to find happiness in writing. It sounds like especially with kids you don’t really have a lot of you time, and that is always important. I often take comfort in the fact that no matter how sick I get (at least physically, this doesn’t always apply for my mental illnesses) I can still write. Even if I can’t walk because I’m hurting too much, I can still write. Gentle hugs, that is so cute. Back to you, my darling friend!

        Liked by 1 person

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