Hopefully the last surgery....just keep him in your prayers. He’s been doing pretty good for the past year. Proud of my son...Dorian Michael Tibbs #Dmoney #fighter
Awesome short documentary on my boy @jamesthebeastwilson
shot by @marqmass
.... go check out the full video on youtube. Search The Real James Wilson
Well I finally got around to it and got a medical alert bracelet. My pots doctor has been urging me to get one for a while. I love this as it's not to flashy. I just think an EMT wouldn't look at a piece of jewerly for medical info. No hate to those that have those types, just not for me. I like that this is on a silicone band and I can move the metal part to any of their silicon bands in any color. I got this by sticky j medical IDs by the way. I faint usually 3-9 times a day in the heat. Lately I barely faint as I'm using my wheelchair full time due to crps. But still I occasionally faint while transferring (when I'm standing for a few seconds on my right foot). So while going to a new school I will make sure everyone knows I faint. But this gives me some peace knowing if I faint hopefully ems won't be called (still might but hopefully less). If your wondering, no I don't have an emergency contact on here. One, because fainting is normal for me. I'm usually awake mid faint, or withing a minute. Secondly, I don't have a good relationship with my family so I don't want them contacted and I have no one else to put. So I'm curious do you have a medical bracelet? If so what do you put on it?
Truth. It can be so easy to be grumpy and mad at the world for how life is going. But don’t be. It’s not worth it. Throw kindness around to everyone you meet.
So today I had an orthodontist appointment. It’s officially been a year so I only have to wear my retainers at night!😝 I’m so happy about this.
But the real reason for this post today is a nice thing that happened today. I was shopping in the grocery store. I was using my wheelchair and putting things on my lap as that’s what works best for me. Well I had all this stuff on my lap and needed something off a high shelf. This nice lady that wasn’t even an employee saw me contemplating how to get it down and helped me. Not only that but she insisted on giving me her reusable shopping back to hang on my chair so I could hold more stuff. I don’t see a lot of kindness in today’s world. But it’s really made my day when she helped me. Getting the items of the shelf was nice enough. But giving me her own bag that she brought from home? Extremely kind. She also offered to help me get stuff around the store if needed, but I was almost done shopping anyways. That lady’s kindness really put me in a good mood today. People don’t help others much anymore. A small act of kindness to you might not take much. But it probably means a whole lot the the person you showed kindness to.
I realized I never posted pictures from my trip to North Carolina. It was an incredibly hard trip as it was pretty soon after surgery. But I sure missed the mountains as we drove through West Virginia and Virginia.Last semester I spent at a college where my dorm was literally across the street from an mountain. It was beautiful. Glad to be going to a new school soon. But I sure miss the mountains (just not wheeling up then in my chair😂)
So true but can be hard to do.
Old picture from a few months ago.
Today I saw my surgeon/ankle doctor. I've talked about him before. He is like family. Today I think was harder on him then me. He kept apologizing for what the surgery caused. He knew there was a risk but he didn't think I would flare this bad. He felt so bad. I could just see it in his face when he kept apologizing. I told him it was fine. It's not the end of the world and I will be okay. He told me he was impressed with my maturity, optimism, and determination. He kept telling me that. He told me it is the end of the world to some people. What did I tell him? Well not for me. I'm gonna have pain for the rest of my life. It might have me knocked down right now. But I'm gonna get back up. The flare isn't his fault. He was just trying to help. We have take risks sometimes. It was a very sentimental appointment. He wrote me a prescription for pt out at school. He also wants all my pt notes sent to him. He wants updates from the hospital when I go in late September. Andhe wants me to call him on his cell once a month and to come in for a visit when I'm home from school. That how much he cares. There is nothing he can do for me right now. And that's okay. But I think it really hurts him. He told me he will always be here for the rest of my lifetime. (So emotional 😂). And he will write any prescriptions and any referrals I need. Today as I talked to him I realised something. Today I have peace. I am okay with this. Being in the chair full time, have more intense pain, the daily migraines, all of it. I can't control it. And by being down and mad about it would get me no where. I'm not mad at God today. I'm thankful he gave me an amazing doctor. I'm ready to fight once again to walk again. This will be my 4th time relearning how to walk because of crps. And that's okay! That means I'm strong. I don't want my doctor to apologise or feel bad. He told I'm the most severe case of crps he's seen. I told him that doesn't matter. It's not about how bad it is. Let's not compare how bad people have it. It means so much that he sees my pain. That he gets how bad it hurts. Anyways this was long. Thx for reading
I am slowly getting my faith back. Before I got sick my faith was so important to me. It took me years to realize how much I drifted from God. I was mad at him for all of this pain and sickness. I still am a lot of the time. But I can’t wait to go to school. A really small Christian college. For orientation there are already multiple small groups scheduled and chapel sessions. And during the school year there is chapel 4 times a week plus Sunday at a church off campus of course. I’m so excited to be moving somewhere with such a love for God. I think it’s gonna help me a lot in my faith.
Took some photos at the amusement park Tuesday while waiting for the group to get back. They went on a standing coaster, which of course there’s no way I could handle that😂. Oh well🤷🏼♀️. Anywho.
I am thinking of making a decision . For the month of September I might cancel all my appointments and tests that are in Cleveland. I know that sounds crazy. But one, if I have the mini van it be really expensive to keep driving back (this is a minor reason). Secondly I just have this peace that I know God has given me on this decision. All the appointments and tests for the month of September are for my POTS mostly. Well I haven’t fainted recently due to using my wheelchair 24/7 so pots isn’t as big of a deal right now. Yeah I still get dizzy and overheat and other things. But the fainting was the biggest problem. I want to be at school as much as possible. I don’t want to miss the first month driving back home for appointments. I have an appointment set up with a pcp near school. And I’ll work to set up with specialists closer to school. But this usually takes a semester or two to fully set up. I leave for the 4+ weeks pain end of September. That gives me one month at school. I want to really be present in campus life at this school. And maybe this is crazy. But I have started to wonder. What if the intense exercise of pt/or of the program helps my pots? Then I wouldn’t need all these tests. I don’t know. I haven’t told anyone these thoughts. That’s why I love this account. I love being able to say things I can’t really talk about otherwise. So canceling all my appointments, crazy? Maybe. But I might just take the month to find new medical care and enjoy my time at school before I miss so much time states away in a hospital.
I just finished a really good book. Reasons to be happy by Katrina Kittle. I absolutely love reading. I love how a good book can take you into a whole other world. This book really reminded me of how many reasons there are to be happy. Now a days I am truly happy. Not every single day, as we all have our downs. But there are definitely a lot more ups now for me. It will be exactly a year in a few weeks that I stopped a medication the made me horrible depressed, self harm, and suicidal. Thanks to that medication I have a greater appreciation for happiness and just finding reasons to smile more often. Life can be really difficult but I think finding happiness is still possible even in the mist of a storm. I Oh and y’all should listen to try by Mandy Harvey. I just really find the lyrics in the beginning to remind me of life with chronic illness. But back to this book. It has gotten me started on my own list (read the book to know what I mean). Here are 5 reasons (in no order) i think to be happy.
1. The warmth of the sun
2. Heated blankets
3. Unexpected connections
4. Moments of uncontrollable laughter
5. Cats when they purr just because they see you.
What are some reasons you have to be happy?
I requested my medical records 2 months ago. I wondered what took so long.... Well here's a years worth of records 😂. Wowza I wasn't expecting this much. It came in a jumbo shipping box.
Well I opened up my MyChart today and was rather suprised. Multiple tests and appointments were scheduled. But no one told me or asked if they worked with my schedule? And I wasn't aware that I needed these tests or appointments. So I called the doctor this morning. They will be canceling the tilt table test they scheduled. I don't understand why the doctor wants another one. He says my heart rate was low when standing for poor man's tilt table test 2 months ago. Well that doesn't surprise me. I was in an air conditioned room, I'm on meds to lower my heart rate, and I was using my wheelchair the whole day. So now he is questioning if I have pots. I'm just confused. As 3 other docs said it is pots, and I had a tilt table test confirm it over a year ago.We canceled the current tilt table test because I obviously can not stand right now. So the test wouldn't be possible. So now I have to come back to Cleveland for other tests and appointments 4 times in September. It's a 6 hour drive. This semester instead of the car I had last semester I will have the family mini van. I could try use prayers that this changes. I can't get my chair in and out of the van on my own cause of it's height. I can't afford to drive to my doctor appointments with the gas milage of the van. I don't know how but maybe somehow my brother will want to switch cars and give me the other one back. Or my dad will lease him a new one. Okay sorry this post is all over the place and makes zero sense. There is a lot going on. Oh and the other appointments, one is with an epilepsy neurologist. I have no idea why he scheduled that one and am waiting a call back. I'm trying not to worry about why he wants me to see and epilepsy neurologist. So for now yeah. It's a lot of waiting. And I might update on some other things in the next few days. I dont know though. I don't want to post a bunch of random posts that don't make to much sense.
Lots of things to post and update on. However, at the moment I am utterly exhausted. So tomorrow expect multiple posts. For now goodnight friends 😴
Well I colored my hair and I hate it. Hoping to work on fading it out before school starts. I wish I had just left it alone. When I'm stressed I tend to color my hair. 😂 So sometimed this happens where i hate it. Oh well🤷🏼♀️. So anywho I have surgery tomorrow bright and early at 6:30 am. I haven't talked a ton about it. But this will be my fourth ankle surgery. I will have had one every year since I was 15. I'm not nervous. But I am expecting the worst. I just think it will make my crps worse as it has every other time. But who knows, maybe it won't. Will just have to wait and see.
Also, I made my decision on the pain program. I emailed them back asking for a later admission date. The date for now is September 24. I will be at school for 4 weeks and in classes for 3 before I leave. I have no idea how I will keep up with classes. I have to keep my 4.0 GPA it's really important to me. I have to find time in the chaos of the the program to do all my schooling. But I don't even know if my professors will work with me to let that happen. But I know God will have it all work out. I'm working with the school as I'll be missing a month or two. But yeah. That's just a little update on everything.
Well I seem to have a habit of making more then one post in a day. Oops
But I got an email from the chronic pain program. They are working on my admissions packet to submit to insurance. They could admit in early September they think. Which is great. But I start school August 24 and classes on the 27. So I basically being there a week or two and leave. I don’t know what to do. I could ask for a later admission date. But when? Either way I’ll miss a month or two of school. Ahh but if I go in September I wouldn’t have time to get to know the other new students and make friends. Ahhh this is super stressful. If anyone has thoughts on this please message me or comment. I am going to take a few days to decide before I email them back. I plan on going. But it’s now a matter of when.