Words. Just kidding.
I did go to the rheumatologist on Monday. We talked about how I was doing. While he was happy that nothing has gotten worse for me, he was hoping that things had improved. They didn't so I have things I need to work on such as getting more exercise, losing weight, blah, blah and blah. It's everything that I had been working on but stopped because I honestly was mega-depressed a few months ago. I'm not completely out of the depressed boat but I am working on it. We did the blood work but no x-rays this round. All in all, it was a good visit and I hope to improve before I see him again.
After the last couple of days, I've been doing some thinking about, well, everything. In going through all that I have wrong with me and trying to relate it to others through this blog, I have nudged some sleeping giants awake and they're not happy about it. Having an invisible illness of any kind will take a toll on the person. I don't care whether it's diabetes, lupus or PsA. You are being told by a medical professional that you have a disease that will limit you in so many ways or will take actions away from you. Yet, you look in the mirror and see that nothing's wrong with you on the outside. You look like the same as you were before you left for the doctor. Between that and hearing criticism from the people around you, is it any wonder why a person would feel as though their life sucked?
Thank goodness for the internet! In the past few years, there has been such an increase in the number of support groups, forums and even Facebook groups for people with any illness, injury or need. With the advancements in technology and the increased ease of getting online, reaching out to someone when you need them is so easy. I honestly remember feeling like I was all alone when I was first diagnosed back in the early 2000s. I didn't know a single person around me or anywhere close to me that had the same disease. I only knew people who had something similar. My grandma had arthritis in her hands. My brother, Bill, had lupus so we had a deeper bond based on invisible illnesses. These were the only people I could talk to outside of my doctor who understand a little of what I was going through. I felt so isolated and needed assurance that I wasn't the only out there, that I wasn't that rare.
After doing a bunch of searches on the internet, I came across a Yahoo! group that was at its heart a support group for people who were diagnosed or had symptoms similar to PsA. There aren't enough words to explain how deeply relieved I felt. Here was a group of about 20 people (20!!) who knew my pains and frustrations and who could lift me up when I needed it most as I tried to do the same for them. Imagine my surprise when I learned that there were people all over the world who have PsA and related diseases. I grew very close to quite a few of those people. Although I'm not very active in the group today, I do still keep the members in my thoughts and prayers. I have found a number of different forums (some unfortunately have closed) where members share my pain, frustrations and tears. It's been such a pleasure (in a weird sense) to find others out there. Of course, I can't forget about Facebook. That has allowed me to really connect with people all over who has PsA, Fibro, pulmonary emboli, etc. All you have to do is type what you're looking for into the search bar and presto! So many pages pop up for you! In this day and age, there's no reason to feel as though you are the only going through a tough time with your disease. Through the internet, it's possible to find someone to talk to at any hour of the day or night.
I'm grateful to have made the close PsA friends that I have. I'm excited to meet others although I'd wish painfree days for them all instead of this disease. Part of me is wondering what the next 10-15 years is going to bring. Maybe there will be a way to just press one button and be near the very person we're missing or need at that moment. Okay, maybe that's more Star Trek-y than I wanted but you get the idea. You may have an invisible illness. That does NOT make YOU invisible. We're out there waiting to help you down these roads. Reach out to someone whether here or through your doctor. These illnesses are definitely a bit easier to live through when you have a great support system. Just remember - You are not alone.
So, by now you've probably seen the quotes of the day. I'm going to make that a regular thing because I believe in the power of words. We all need a lift at times. This is just my way of helping however I can. I am planning on covering the other illnesses that I have in a few upcoming posts. There are a few in the works regarding some alternative treatments for PsA and Fibro. If there's anything you'd like to know more about or just general questions, please feel free to leave them in the comments. I'll answer them as best as I can. Thanks so much for taking the time to visit my blog!
Until next time,
Kay
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