Invisible

This month has been a busy one and I was having quite a bit of rough days so I didn't get to blog as much as I wanted to. I think it's been about a month since I last wrote a new post.  I never intended to go that long, I was just having a lot of rough days and didn't feel good enough. So now I can finally write another post! Instead of the typical blogs I thought I would just bring you up to speed as to what's been going on this past month.   At the beginning of October I had a tilt table test done. If you don't know what a tilt table test is it is something doctors use to essentially cause a fainting episode. I have been having issues with getting really dizzy and rapid heart rate upon standing so they check what's going on by doing a tilt table test. It is like a normal hospital bed except it has straps over it to keep you strapped in so you don't fall. You lay down for 10 minutes and your hooked up to an ekg and a blood pressure cuff and they are checki...

You hear this statement many times that everyone is different. Yet when something is wrong people suddenly forget that not one person on this earth is the exact same. Especially when you have health issues, people forget that not everyone is the same. How do I know this? Well it's pretty simple- I have people come up to me all the time saying -why don't you just walk more, my friend did that and her fibromyalgia is so much better. Well, I am different from your friend. Our fibromyalgia isn't the same and I have more going on than fibromyalgia. I am glad it works for your friend, but our bodies are different, so walking for me means pain and swelling and falling. Another example of when people forget you are different is when they say -  well my friend who has this illness cut gluten completely out of her diet and she barely has any pain. Well I am happy for your friend but that isn't my problem, so cutting gluten won't help me and I have already tried. Everyone alwa...

365 days and a picture is all it took for me to realize just how much I have declined in health. Yesterday was picture day at school. I didn't think anything about it until later that evening as I posted my picture on social media. After I uploaded it I just kinda froze a little bit. I remember picture day last year - I was walking. Yes, actually walking long distances and my body wasn't in as much pain. I was using the scooter and my wheelchair for long walks. I was tired but not anything like I am now. It's almost as if all of those symptoms have been doubled in a year. In the course of those 365 days I lost many things. I lost the ability to be able to walk into my house. Going up 4 little steps caused me to pass out and fall and get sick. My church built a ramp for me to get into the house which mom pushes me up in the wheelchair. I am so thankful for that ramp. Also sometime in that 365 days I had to become so dependent on the wheelchair and scooter. I could no longer ...

I feel like I have two jobs instead of just one. I am not the only one that feels like this, many people with chronic illness and pain deal with this. I love my real job and that is the job I love to do. My "other job" is being a patient to all these doctors. I don't enjoy that job at all. I used to really only go to the doctor for once a year checkups and the occasional visit for being sick. Now I have some type of doctor appointment usually at least once a month. This summer there was about a 5 week period where I didn't have any doctor appointment and it was amazing! I finally had a break - but not really! I didn't have appointments in that time but about once a week, sometimes more, I have to do something. Sometimes I have to refill prescriptions and that can be a process if that doctor is out, or insurance doesn't want to be helpful. I have to schedule appointments, and message or call doctors if there is an issue with my health. I have to go to a doctor ...

Are you like me and wear several different 'masks' throughout the day? I have a couple. At home the mask comes off. At work I put on the 'mask' of nothing is wrong with me, I am doing ok, putting my brave foot forward. In public I wear the same 'mask' I try to hide my pain, my exhaustion, my tears, and just smile. At the doctors offices I put my 'fear nothing' mask on and pretend my situation isn't really that bad. This month has been a hard one for me. At work I pretend everything is fine because its a place I can 'escape' and keep busy by working, I don't have to think about anything but work. My depression really started up again towards the end of summer. I had all these hopes that I would get better this summer with doing water aerobics almost daily instead it did the exact opposite. I was in more pain and more exhausted. I was left with disappointment. I have been dealing with a lot of frustration towards doctors and myself. I am so...

Today is the last day of summer vacation before heading back to work tomorrow. As I reflect on my summer I had times of good and bad. It was not what I was dreaming it would be, but because of that, I have learned to be more realistic. I had really big goals and dreams this summer that I thought I would accomplish but I didn't. I get upset and sad but I pick myself up because that is just the way it is right now. I remember talking to one of my co-workers around Christmas about how my goal for this school year (2017-2018) was to come back to school walking and I thought if I have to use the walker, oh well at least I will be walking. I remember she looked at me and said something along of the lines of if your body isn't ready for walking by then that is okay. No one here is expecting you to walk you do what your body needs. I was so stubborn because I thought there is no way I can still be like this next year but when she said those words to me it meant a lot. I had support and...

*This is another one of those blogs that I am not directing at any one person.  I don't want anyone feeling bad if they have said this instead, I want it to raise awareness.* Would you enjoy being told at least once a week, sometimes even multiple times a day that you aren't managing your illness right? No, I don't enjoy it either. I wish I could say I was exaggerating when I say this but I am not.  I get told almost daily, sometimes even more than once a day, that I am not doing everything I can to make me feel better, or I am not doing something correctly. It's exhausting to hear that over and over when people have absolutely no idea about my health. It might be different if it was only mentioned a couple times a year but I get told about things I am not doing right way too much. You probably know a little bit about my health but you are not with me {unless you're my mom or sister :)} at every appointment listening to what the doctors tell me. I have tried some ...