Good Morning

I can’t take it anymore. I need to go to the Urgent Care and have them look at my feet and ankles. The swelling is worse than it was. The picture was just me playing with the camera on this ATT Primetime tablet. It takes great pictures and I like it so far. When you just basically on bed rest, you find things to do while in the bed. Of course you can watch movies and use your devices but you can’t sit or stand too long. Walking is even worse and I may not be able to put my boots on and go out in the snow.

I don’t know how much snow we have because I was resting all day yesterday. I had an appointment with the doctor but she was sick. I have to reschedule but I need medical evaluation right now. I am not scared but do wonder all day long what the cause of the swelling is. Rather than laying around and resting all day, I need to go see about my feet. They feel almost numb. I soaked them in hot water this morning really early and put some Peppermint oil on my feet and ankles. They feel better right now but you can’t deny something is wrong.
There are a lot of post here but like I said, trying to keep new content is easier if you schedule your post. I can even schedule a good morning post to Twitter everyday. I haven’t really been able to change all the settings on this tablet yet. I was so tired that when it arrived, they opened it and took a peek. I was sleeping so well again that they tried not to disturb me. This swelling got worse again when I braided my hair. I had to wash it and blow dry it first. The next day I braided it and haven’t did anything else. My daughter immediately looked at my feet and told me I needed to go somewhere soon. I am going to the Urgent Care that she goes to. I don’t think this is an emergency but I can’t keep wondering what is going on. I need to know something right away.
If I don’t post for a few days or so, it’s because I am getting more rest and my only excercise is going up and down the stairs for water and food if they are sleep of gone somewhere. I would have took a better picture but I need to relax for a minute. I have to get up with my daughter every morning before school. I am exhausted from trying to fix me some breakfast and soaking my feet downstairs in really hot water and Dawn dish washing liquid. They look a little better. Need another pedicure. Hopefully we go early enough this morning so I can get back home and get in the bed. That NordVPN is what was causing all the devices to run slow. I did a test without a VPN and one with a new VPN. The devices worked much better for me. I am using a VPN on all my devices except one which is his laptop. That is how I figured it out. It wasn’t the internet speed so no need to call Customer Service. Just needed to completely uninstall that NordVPN app from everything. I will tell you which VPN I am using now soon as I get a chance.

It really hurts to even move my right ankle. It feels like a strain or like I twisted it which I didn’t do. Because he is at home more now, we fighting over space and the PlayStation. We don’t have to fight about the laptop anymore now that I have the tablet running smoothly. I actually fixed all the devices before I went to sleep. I woke up at 6:30 in the evening. And still felt tired. I think I may need to eat something else because I am still hungry. Maybe he will cook us some bacon and eggs for breakfast if he is feeling okay. He is an insulin diabetic. His sugar has been high the last few days but he does check it regularly which makes me feel better about it. But it also makes him tired sometimes. Depending on what he has been eating or if he really ate at all.

My seven year old daughter is now reading as much of what I write as she can which is good sometimes but bad at others. I realize now that we can’t share a tablet which is why I had to get another one. She bores easily. From the Switch, Netflix, PlayStation 4, and Cordy 2 on the other tablet. This one didn’t come with those stock games which is also good. I managed to take a look outside and there is quite a bit of snow. He said that it snowed all day while I was sleeping. He was right. My feet are going to be really cold in house shoes. I may do what they used to even though it looks tacky. Cover my house shoes with a plastic bag or two so my feet stay warm and don’t get wet. There is no possibility that I can get any other pair of shoes on. It would hurt too much. I have what I am going to wear already picked out. All I need is some food and a quick nap, and I will be ready to go.

  

 

 

Dystonia: Get the Facts on the Syndrome and Treatment

We get most of our information about Dystonia from the Dystonia Medical Research Foundation but this article explains it well. “Syndrome” is correct but I refer to it as a disorder. It is rare and this is general information. I have Myoclonic Dystonia or Myoclunus which is the sudden jerking like movements you see in my videos on YouTube. The link to my channel is in the menu. https://www.medicinenet.com/dystonia/article.htm#

Swelling

This swelling issue has been going on for too long and my ankles, feet and legs hurt. Since it was my first time seeing the new doctor, when I showed her my ankle, she didn’t really act like it was a big deal. My eye she said it would be easier to figure out what is going on with it, if she could have seen it first hand. Like I said in a previous post, she thinks it is my allergies even though I take allergy medicine everyday. She also said that I could have built up a tolerance for the kind that I take and said to rotate this one with the other kind. When my eyes are puffy or almost swollen closed, I am supposed to take the Zyrtec and it should bring the swelling down. No more hot towels according to her.

The pictures didn’t really show how bad the eye swelling was. Since this past Friday when I saw the doctor, my right eye was swollen instead of my left and now both of my feet. Part of my leg too. I haven’t filled the prescription yet or I need to go pick it up from the pharmacy. Both of my feet are swollen as well as my ankles. The swelling had gotten so bad that it had spread up into my right leg just below the knee and all the way to the foot. Everything felt tight when I woke up, I knew something was wrong since I had the same feeling with my eyes. I have limited my activities but still have to go up and down the stairs and that hurts. It is like I am on bed rest but making progress. I can’t do my hair yet because I would have to take a break from that standing with every braid.

I didn’t really elevate them. I didn’t try soaking. My other doctor which is Pain Management doc told me to limit my standing and or walking when they swell and I should be fine. He said it wasn’t a big deal in most people but in someone with my illness it is. I would rather go through the Internal Medicine doctor for this because it is more in line with the type of care she can provide. I also have two doctors that come out to the house at least once a month. One can take a look at my ankles and feet today. His office called yesterday to set up a home visit. I can show them to him and get a second opinion. The other doctor doesn’t want me to have these doctors who come to my house if I am going to be a patient of hers. She says that is like too many cooks in the kitchen but for me it is like a second opinion and a fresh set of eyes. Especially since it is limiting my daily activities at home with my child. She always needs something.

I have two appointments today and one I have to go out the house for. That will be a challenge. I can walk but it is really harder with my feet like this. I picked out all my so called outfits before the pain got this bad and hung them up in the closet. That way I can just grab one and be done. It hurts to even sit here and type this but I am not standing on my feet for sure. My ankles hurt when I try to move them and I can barely move the right one. I would feel a lot better if they were just swollen without the pain. The pain makes it hard for me to concentrate and nobody should have to lay and suffer in pain. I just don’t want to take a pain pill for it. It could get worse with me going to the doctor and coming back and that is when I would need a pill maybe. We all know about the opioid crisis and I don’t want to end up like that.

Everything is weird now with him being at home more. We have had one disagreement or two in the past few days. And they are still calling him to come in. He didn’t give them any notice. He told his boss how he needs things to be again and she ignored him again. Now he is really fed up and a bit cranky. I am lucky I can even use the laptop right now. Hopefully he got us some medicine. It may not be for pain necessarily, but it will help with the stiffness. It’s almost the weekend and I can really get some rest. Staying off my feet makes me feel lazy because it means I can’t exercise like I normally do. Going up and down the stairs all day is part of my daily routine. I do those stairs with pleasure. My Pain Management doctor was trying to put me in a wheel chair and I was not going to except that. I can’t walk normal like everyone else already. I am walking even worse right now. I am going down the stairs just to get water which someone can bring me but I don’t want to be a bother. I am glad that I do have some kind of help. Some people with Dystonia don’t and these Home Health Care Providers need to be getting paid more money for the work they do.

Appointments

Strangly enough me and my daughter have appointments on the same day. Her hair still looks good. My cousin did a good job. Both me and my daughter are seeing new doctor’s today. Got to thinking about how much we have to do today. I want to go to her appointment but would miss mine. I need to get established with this doctor and the Hospital right away. Especially with my eye swelling up during my sleep last night. It has went down to almost normal thanks to warm compressions.

I am not that cold but am still shaking. So, occasional tremors is an understatement. I have them daily. The PT noticed it when he was checking my vitals. Tremor in the right arm. And now in my index finger on my left hand. All this is new. I can’t hold the phone and take good pictures. I take them but it is really hard. Luckily I am right handed. I wrote all this out during my hair break so it would be easier to post. I can post via phone, tablet, or laptop when it is available. But for typing out the post and proof reading it, I need the laptop. The tablet would be my next choice. We have a Samsung Galaxy 4. I like it but it is time for me a new one soon. After I pay off the ones my daughter broke.

I have 8 more braids to do and then I can take another nap. If it’s not too windy, I will wear it out. Otherwise, I am still wearing a scarf. I will just put the scarf in my purse until my head gets cold. I decided to rebraid the same way I did when I posted about my hair. Peppermint Oil and Jane Carter’s. It feels and looks really healthy despite the fact that it needs to be washed. I have been growing it for over a year and started with brush waves. I bought products that were good for our hair and have been using them regularly.

I post as much informative stuff on here as I can and as time permits. The blog hasn’t even been up a week and I am enjoying it again. Today I decided not to talk too much about Dystonia. It doesn’t define me. I have it and I know but it is not who I am. I still have to get up and function the best I can every day. I take morning meds, night meds and other meds through they day to do this. I don’t take as many as I used to but I know I am not taking too many medications. I feel better and better each day with bad days in between. The Pepsi gives me energy, but is bad for my health and I smoke a lot which is also bad at 40. I am doing good though. And I am happy with that. I can care for my child without too much help when her father is at work. I like this because I get to spend more time with her. Especially on a good day which I hope today is for all of us. Wondering what we are doing this weekend. My hair will still be done either way which is comforting.

Using fore arm crutches

Doing your blog from your phone is easy but it’s too small for me. I need to update the tablet with these pictures so I can write from it. The website we used the lap top for. I haven’t been able to read any blogs yet. I just got back on WordPress. Thank you for reading and for the likes and follows. I am sharing this on Twitter and Facebook.

I am learning how to use these and carry a purse at the same time. For the doctors appointments. I just woke up because I forgot to take my medicine. Technically I have 3 hours to kill. The water is helping with the dry mouth from the pills so I keep some by the bed.

I told my doctor instead of being in a wheelchair, I wanna use these. These are covered by Medicare but cheaper than the standard. Standard are 8lbs. I can’t lift 8lbs so I could barely use them. These were special ordered. I picked them out on line. Now I am get ready to start my on physical therapy. I just got to look the exercises up for my legs. I need to do them every day now to get ready for spring. I wanna get out the house more this summer.

I can use these but do need more training. The more I go out, the better I get at using them but when I have paperwork, where do I put it. In my purse which holds everything I may need when I am out except a flashlight for a key ring so I can unlock the doors easier. Need to order one.

The purse has all the medical stuff in it. Not too heavy to carry. The more stuff I have to carry, the more challenging it is. I am free for two days before my next appointment and might go out tomorrow. My daughter is going to the Dentist. More practice for me. I have to check the weather. Friday I am finally going to meet my new PCP from my new hospital. Hopefully my blood pressure is better so I can stop taking these pills. They have to keep it monitored now. My hair needs washing but I can wait. It still looks okay with the braid out. Just trying a new product out and waiting to see if I am getting it dyed or not.

These crutches work great for balance. With a Zanaflex, you could train yourself how to use them. It’s not that hard because they are like having two canes and way better than a wheelchair. The blue ones I couldn’t find so these are rather plain. They suggested decorative tape which I did find online. You just wrap it around neatly. I can’t get another cane until it warms up. I am more comfortable using these which I don’t see many people with. If you need some fore arm crutches, go to Drive website. That’s who makes them and I recommend these. 👍🤗