Putting My Foot Down (is extremely painful).

*Warning- Venting Ahead*

Have you ever said “It can’t possibly get any worse than this.” then it gets worse, like way worse. That is how much pain I’m in. I seriously didn’t think it could get worse, but it can, and has.

Something is going on with my right foot. The top of my foot is in a constant state of flare. I made the image above to show the general pain area and how I feel. Just add an elephant stepping on all those knives, and we’re almost to the right pain level. Thankfully it isn’t in that state ALL the time, but it is anywhere between a 7 and 8 at any given time (10 for really bad flares). When you legitimately consider cutting your foot off, you know there is a problem.

My doctor thought it could have been a hairline fracture, so I had an x-ray… nothing. I’ve got an MRI scheduled, but I have to wait another week and a half since I got a new tattoo recently (apparently that is a big problem). So, for now, I just take very strong pain killers and hope for some relief.

I’ve also bought a “boot” to keep my foot as stable as possible. It helps, as much as anything can. I’m able to walk easier, but I’ve had to use my wheelchair more often than usual. I had to do something, I missed over a week of work and I could not afford to miss any more.

In other news- I got the results back from my genetics test and have an appointment tomorrow to go over them. Over the phone they did tell me that I definitely have the gene associated with EDS, so getting that (official) diagnosis will be a huge step forward for my treatment.

I’m also meeting with a Social Security Disability Attorney to go over my options for filing for disability. I should have done it years ago, but I was just too determined to keep working and not allow my conditions/pain to control my life. Well, I’m to the point where work is a huge trigger for my pain. I’m sure I’ll do a whole post just about the SSDI when I know more about my case.

So, that’s what’s going on in my world right now.

I hope everyone is having a wonderful, pain-free day! (((gentle hugs)))

Advertisements

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!