It’s Been A While… and I’m Struggling

I haven’t written anything in about a month, because I’ve struggled to find my words. I’m still having a hard time, so please hang in there with me and I will do my best.

The day before Thanksgiving I got a letter from my insurance telling me that my electric wheelchair had been declined. This was a huge blow to my progress and to my emotional well-being. I’d been going back and forth with my doctors office and the supply company trying to get that chair before the end of the year (out-of-pocket met). To get a denial after months of waiting, was a kick in the gut. So, now I have to appeal and start the whole process all over. I know that it is very typical, and I’m not alone, but it’s still devastating.

I also started my IV infusion treatments for the Rheumatoid Arthritis. Some things about it were expected, others were not. I knew I would be tired and sore, but I was still unprepared for just how tired and sore. I was told it would take five hours, when it actually took seven. I did not know I would have to have my blood pressure taken every half-hour, which is one of the most painful things ever for me. I left there with a huge bruise on my right arm and unable to even lift my left. I was grateful there were kind people there that are good at their jobs. They took good care of me, and understood when I had to get up to go to the restroom about ten times over the course of seven hours. I was pleasantly pleased to have a large screen TV and Netflix that kept my focus away from the pain in my back from the uncomfortable chair. Four full-length movies later, I was done and my husband took me home to rest. I was unable to sleep due to the pain, even though my whole body cried out for it. For days my arms hung at my side like bricks, I had to take off work and could barely lift a glass to drink water. I’m also starting to lose my hair. I knew this was a possibility. Its been a while since I’ve dealt with major hair loss, it’s one of the reasons I’ve had to chop my hair off (I used to have very long, gorgeous hair, now it’s a pixie cut). My last shower, the tub was covered in hair, not encouraging.

I’m still hopeful these treatments will relieve some of my pain, I just wish the process weren’t so destructive. I have another treatment in a few days and I am (obviously) not looking forward to it. The worst part is that it will be the day before Christmas Eve. Which means (based on the experience from a last time), I will be very little good to anyone over Christmas this year.

I have a tradition every Christmas (every since my first was born 14 years ago), to stay up and wrap gifts while watching A Christmas Story on Christmas Eve. Then arrange the gifts under the tree for the next morning. Over the years it has taken me longer and longer to complete this task, as my pain has gotten worse. But it’s something I enjoy doing, so I make it work (and I get the watch the movie several times, so that’s fun). I save up my spoons and use them all on that night. But not this year. I have to be practical, I just can’t do it. I’m going to wrap the gifts on Thursday, the day before my infusions and on Christmas Eve watch the movie while I lie on the couch, watching my husband set the gifts out. Maybe I’m wrong, it’s possible I’ll be okay. But I have to be realistic and when I look at the facts, I will be out of commission.

Another big stress in my life right now is work. I wish I didn’t have to work, but I do and that is that. I’m at a place now where the person I work for is actually very understanding and accommodating, but there are still outside factors that are pushing for that to change. It is upsetting and my anxiety level triples when I’m confronted with it.

Then there’s the weather! I live in a cold climate… for now. Where I live there are amazing schools, it really is the only thing that has kept us here. My son is Autistic and does much better when incorporated in a regular class, our school district is one of the best in the country for this. They’ve bent over backwards to accommodate his needs and make sure his education comes first. That being said, I am SO over living here!!! I need to be in a warmer climate. My body is screaming and begging me to move. I need to be in a place where there is little humidity and less extreme changes in weather. I used to live in Texas, but the allergens there were horrible for me (even though I love the Hill Country and would move back there in a second if it weren’t such a huge problem for me). So, we’ve talked about moving as soon as both kids have graduated high school, probably to New Mexico or Arizona. Our youngest is in 5th grade… there are times (like right now) that I feel like I’m never getting out of here!

I’m sorry this has been such a negative post! As most of my readers know, I always try to add at least a tiny little bit of positivity into everything I write. Right now I’m just in a lot of pain and having difficulty communicating any semblance of strength or inspiration. I will say this though, I did see the new Star Wars movie! It was really, really good. 🙂

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!