I have been trying to raise Dystonia Awareness but most people are not really interested in learning what it is and how it would affect their health. How many people see the word Dystonia and actually look up the meaning or wonder what it is. Most doctors can not diagnose it and you end up being diagnosed with other illnesses by mistake. I was diagnosed with MS which everyone has heard of but even I can’t remember how to spell it. Probably because I took the shots to treat it for two years and was then told by the Neurologist at the time that I didn’t have it. 7 years later, I am diagnosed with Myoclonic Dystonia and Occasional Tremors. Makes good sense to me. I have less control of my muscles than I did 10 years ago which means whatever I have is progressing along very slow.
I decided not to go to the Urgent Care because of the weather and my ride simply didn’t want to drive in this snow just so they could tell me the same thing the doctor said. Rest and elevate my feet. Watch what I eat and go light on the salt. I am not monitoring my blood pressure yet and I haven’t started any new medications. The soaking brought the swelling down a lot plus not being on my feet today or yesterday. I am not really even supposed to be sitting here typing this because the swelling can be caused by sitting to long. As far as Dystonia Awareness goes, I am raising a bit of awareness everyday but I do take a break from all the medical problems to focus on other things. Like raising my child and keeping our appearances up to the best of my ability.
I am using the laptop right now because he is gone and I only needed to use it for a hour before I play Mortal Kombat XL. I can prop myself up in the bed to play. It is cold with fresh snow on the ground. I don’t have to go to another appointment until Friday so it gives me plenty of time to rest, soak, and elevate through out each day and maybe by the time of my appointment, I can get my feet in them boots. I am the type of person who exercises by doing the stairs all day and I still am but not as much as normal and I am using half my speed making sure that I don’t step the wrong way and fall on the stairs again. I fell and twisted my ankle on the stairs last year and that hurt more than this does. This is more of an uncomfortable feeling and they seem to leave stuff in the walk ways as if they don’t remember that I can trip over it.
I am not focusing on the Dystonia right now because of the constant swelling in my feet, ankles, and part of my legs. It only really hurts when I try to bend the ankles or someone steps on my foot. There is no more swelling anywhere. Not even in my eyes right now. The marijuana helps with the pain and also helps with sleep. Some types work better than others. I am currently using THC instead of CBD for now and I am still using my pipe to smoke it. Such an easy way to do it and helps me dose myself. I am not really a recreational smoker or social. I am learning but I am aware that if it is not grown right or they use chemicals on it, it could have a negative affect on my muscles. It has happened in the past before I started to go get everything from a grower or the dispensary.
Nothing from that dispensary taste good or like it should but they keep the prices low since they are in the neighborhood. I am going somewhere else with better quality than them soon. I am also looking for something to help me sleep or relax the muscles. No more attacks since my last post about them which means that the cannabis is working. If I do have another attack, I know I don’t have to travel far for relief and on a good day, I can go a little bit father away to get better quality. And better tasting clean smoking marijuana. You can not imagine how many people try to sell me something through Twitter but they don’t have real pictures. If I was and I am going to sell something like that to anyone, I would definitely have a picture that is current and that I just didn’t do a Google search to find an image off it to trick someone into buying. So called weed men on Twitter seem to not understand this and they just grab an image off Google and DM you that waste of time picture that I can download myself. I sure hope when doing business on Twitter of this nature that you are being careful because these people are only out to get your money and once they get it, all you can do is complain. After all, they are not really using their real name. Some don’t even have enough sense to hold a conversation with a potential client but they love to spit that game like they can suck the credit card number out your pocket. I just have learned to ignore those DM’s now.
The laptop is more fun to use because of the keyboard. I can also see a lot better what I am typing on here than the new tablet. That AT&T Primetime tablet is really nice. Especially since it was free and you only have to pay $10 a month to have one of your own. It has the speakers on the front instead of the back which is a plus and it takes amazing pictures. The battery life is good fresh out the box and all you do is sign in to your Google account to get all your apps on the new device and then connect it to or discover other devices. It was an easy set up. It came by delivery in a timely manner. I have switched from the laptop to the tablet but I am able to continue where I left off. The prediction of the next word you might type is good and it has auto correct already on it. There really isn’t much that I had to do to set it up and I was able to turn the tablet into a phone just by following the very simple instructions on the screen. I fixed the settings for the keyboard and found what I was looking for. I wish this tablet would automatically put a period at the end of a sentence but my phone can’t even do that. I am using G Board by Google. You can really customize the way it looks and feels when you type. 👍
I like to wash my hair in nice warm water but my water isn’t staying hot long enough for me to do what I need to do to my hair. I had the same problem with washing my daughters’ hair and had to use a bottle of warm water to rinse the conditioners out. I forgot and shampooed my hair and by the time it was to rinse the second time, the water was too cold. You know. Warm on the skin but too cold for the scalp. So I got some bigger plastic bottles and warmed me some water up in a tea pot and it was too hot. At this rate, we can take a 30 minute shower which is good but we need a hot water tank like he said. Our water shouldn’t get that cold that fast.
Right now I have washed and used two conditioners. Now I am doing the first deep treatment. I like this Cantu product a lot and it is the only one by them that I use. It’s in the Natural Hair – Products we use section. It has to stay on for thirty minutes but smells so good. If you can’t see the label in that picture, it is called Cantu Shea Butter Deep Treatment Masque which you can get a Family Dollar sometimes. It cost around $9 but will last you a while depending on the lenth of your hair. I cover it with a plastic bag rather than a shower cap because I have so many plastic bags in my house, I might as well make some use of them. Everyone says I am cheap but why go buy some shower caps when the plastic bags do the same thing?
After I rinse the Cantu out, I have added another quick Masque just to make sure my hair is well conditioned and looks healthy. I use Eden Body Works Natural Hair Masque Treatment. It is also a deep conditioner. You leave it on for just 15 minutes unless somebody is in your way. I would say thirty minutes at the most. I also agree that you should never leave any product on your hair for more than an hour. I have done this and the results were terrible. Made it less manageable. Eden Body Works is Paraben and Sulfate free and both products are water based meaning the first ingredient on the label says water (Aqua) and in fact, all the products I use are water based products and 90% all natural. I always look for Paraben and Sulfate free products for my hair that are water based and add moisture not grease or heavy oils. I try to use things that are light on the hair to prevent build up and make whatever I am doing to it last longer.
I have like 10 calls to make this morning mainly for me a my daughters’ appointments. We have a lot. I have one Thursday and one Friday. Not making any more for January. I don’t want to over book and wear myself out. No matter what I do or say, I am still disabled and functioning at half of my abilities. I do my own hair still and will as long as I have the strength. I don’t rely on help from others because I am on a time schedule even though I can no longer work. Best way to put it is that my job now is to make sure I keep, make, and reschedule appointments for my house hold and to go to the doctor regularly. Specifically regarding my eyes and my thyroid. My ankle being swollen is from me doing too much but the eye thing I don’t understand yet and I don’t believe it’s just my allergies. The next time it is swollen I may go to urgent care if I have enough time.
I know these post can get weird on Twitter. Meaning it’s posting while I am on there. That is because I schedule them too. That way I can keep new content here daily. It is easy to add content so through out the day, as I run across new information or find something interesting, I just share it either on here or on Twitter which by the way I still love but I accidentally unfollowed someone. I feel kind of bad but in a way, it’s not like I knew them or anything. I don’t know anyone on Twitter. I just like how fast I can get information about health and the news. I am also on YouTube but only the sick part. I never made a video of me well but I am going to do so after I do my hair. I will add the link to it even though I don’t maintain my YouTube channel. My handle is Twistteddollface. On PS4 I am kushkola313 and BlackWhiskey313 but I don’t really play online. My husband does. I will add all this to the menu too. Contacts are important for business right now and we are running two websites and he is passing out fliers. He ended up smoking and thinking about how his boss was treating him and quit yesterday. We are trying to go into business for ourselves. Self-made. He won’t be sitting here playing the game all day and neither will I. We got too much stuff to do. Generate more money until he can find a better job or continue doing what he does best. Drive and grow. Making plans for a garden but we have a Pitbull in the yard. I hate when they pee on the fruits and vegetables.
In my window in the kitchen has enough room to start growing some herbs. I used to put the little baby plants there because of the sunlight. They did good. Mine. The ones I got from someone else must have gotten stressed and they did very poor with that amount of sun and water I was giving them. My cousin is growing some of everything but lost her plants because the Christmas tree was blocking the light. The ones she got left I can get a piece of and finish rooting them in water before we plant them in the dirt. We are also looking into edibles. I get quite a few good recipes from Leafly that I haven’t tried yet. Cookies are okay. Ribs would be a lot better. I did a Pepsi rib that actually tasted like Pepsi because it was marinated overnight. So tender.
I am using the phone to post today because everyone is sleep. I didn’t smoke before I went to bed and woke up cold because someone decided it was too hot and opened the window. Yes it is warmer outside for now but not so warm that you need to open your windows yet. I have on my hoodie again for this reason. His blood pressure must stay high or he just like cold air when he sleeps. I know it makes me stiff so if I can’t move, it’s his fault. And he is going to have to get me something to relax my muscles and get rid of these aches and pains. Shop opens early so I should be fine. Hot water is better now. It could be because it hadn’t been used all night. I don’t know but I do know that I need to start pricing hot water tanks. We are going to need one right away.
Good information here on side effects you may experience.
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.
Something like a luxury. I like to cook it now. It’s just hard to cook with tremors. He asked me to finish cooking the sausage for dinner but I have no idea what we are eating. I am not type of person that takes pictures of anything. My hands be shaking or my finger. I could take a muscle relaxer but I have my daughter and they make you sleepy.
I woke up with my eye swollen almost closed. The second time in a month. I am tired. At least my body is which a lot of people don’t understand. My body feel like I been fighting. Not pain but drained of energy. I had no caffeine today. My husband and family asked me to stop drinking so much. I been drinking water all day and organizing everything for my appointment with the new PCP. Haven’t had a PCP in years. I am hopeful about this doctor though. Internal Medicine. The kind of primary care physician people with Dystonia need. Too tired to do my hair but I am not missing this appointment. I will wear a scarf like usual and what my husband asked me to wear when I am riding in the car with him. It will be a lot warmer tomorrow than today anyway.
My hair need to be braided in the at night before and took in the morning. If I have to go out. I can’t sleep on it unless it’s braided. To hard to untangle. I could braid it back. I have 19 braids. There is a girl on Facebook who charge $1 a braid who could braid it back. She is advertising. And looks young. It would only be about $25 if I were to do it. Infact. I need to ask her how much she would charge. Just braid them back with that same product. My hair is dirty but not that dirty. Not by appearance. I’ll just wear a scarf. One that matches my clothes to the doctor. I have to finish cooking my daughter food. She’s hungry but I am not yet. I will be in a few hours. After I finish my hair. Husband says leave it like it is because it doesn’t look dirty. So did my daughter so I will spray it with some oil. I will post about it soon. Works great!