The biggest part of having Dystonia is the progression but just as important is the fatigue. You can get all the sleep that is possible and still wake up feeling what we call “tired”. People ask what I did today that would cause me to be so tired but it’s not what I did today that makes me tired. It could be me being tired from what I did the day before. Yes. They day before or even the day before that.
Most of us use different methods to stay woke but the medications we take make us drowsy and come with that do not drive or operate heavy machinery warning. I have been trying to stay woke all day and go to bed at the same time every night. It is working to a certain extent. I need something to do still even though I am disabled and retired. Recently, I have been having problems opening my eyes in the morning again. This makes getting up everyday even harder. Sometimes I can’t go to sleep at night and end up sleeping all day. No matter what I do or don’t do, I am still going to suffer from fatigue during the day and especially in the morning when I am about to start the day.
I have been working on this website and connecting with more people who are interested in African American Trades & Goods. I myself am trying to start a business selling the oil combinations that I make and use for me and my daughters’ hair which she believes is making our hair grow. Right now, we both have the same hair style. High Pony Tails. Hers is bigger than mine of course. This is because the person who was supposed to do our hair is busy. Our hair is long enough to get away with neat ponytails now so why not wear one.
I have went through the withdrawal symptoms of taking Valium for all those years and came out on the other side just fine. I am glad I have medical marijuana access in my state because that helped a lot with the nausea and insomnia. The down side is that I have a higher tolerance now. I need a certain dosage a day to stop the tremors. I smoke more if the quality is bad like what I just recently bought and yes, even with a license or card, you still can end up with old or weaker strains of what you need. Even though you are going to a dispensary. Look close before you buy is what you should do.
I am feeling much better now that I am no longer dependent on any medication finally. I feel so much better that I am going to celebrate soon. I was getting my hair done by a family member just to get it done. I really don’t have any plans to go any where. I just want somebody I know does good work to braid my hair for a change. Of course it is not for free but it is a family discount that I can use and part of African American Trades & Goods. We are just getting the goods in now and the site is going to be updated soon. Please do subscribe or I will keep you posted here as the changes are made and the site gets new content.
This what it was like before I stared smoking medical marijuana. I will be doing an update soon and please do subscribe to my channel.
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. 👍
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#
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.
Behind closed doors I do. Most people just roll up but I can’t roll. I have to learn how to do it all over again. Trying to roll up anything when are shaking just isn’t going to happen. It’s hard enough for me to break down. I use a grinder sometimes. I smoke blunts and joints. Next time I am going to try to roll a joint. I like to do stuff that requires me to think first. How am I going to do it. I used to roll up twice a day with Swisher’s. I bought them by the case to save money. I was buying strawberry to cover up the taste of the depensary’s medical. Some of it worked but had a bad taste. I like mine to taste good.
Piping it gives you the actual taste as long as you keep your pipe clean. A gram of something that works really good will last me 3 days. I have low tolerance to some strains. And it depends on where I got it from. I tried a new dispensary today and got a free sample of some type of pre rolled. It tasted like it smelled. I wouldn’t buy it. I got what they call Fruity pebbles today. Last thing I tried was Wedding Cake 🍰 which they do keep but it cost more of course. Their prices were good for the selection they had. I am going to a different one next time. It is really nice and big. They sell Kosher which is for pain.
Many people with my disability are scared to try it. I tried it because I ran out of pills. It can happen to anybody. The pipe I bought because I love the way it looks and it breaks down into three pieces. It is easy to clean with water and pipe cleaners. The bowl is too small for some people, but not me. I medicate a little bit at a time. I normally smoke only Indica. Works good for the body and you don’t feel to amped up. The free one I was puffing on is now in the pipe. Somebody had to teach me how to use a pipe. I used to hate for my eyes to be red. The glasses I keep learning to wear because of that reason. Plus the help keep sunlight out my eyes since they are so sensitive now.
I appreciate delivery and my papers for my license were delivered to me ready to go. When I was feeling better, I went up there to visit the owners. The hold up was that doctor was out of town. When he got back in, he called me right away and I sent him my medical info from my last appointment. My papers were ready the next day. I was getting frustrated on how long it was taking. Like that pipe took 2 weeks or more to come. The new tablet comes next month.
Since he quit that job, it really don’t matter. I would think that they fired him and he just didn’t want to say. But they were calling. He was calling about a roofing job.
My hair is washed, detangled and oiled. I also did a blow out. After all that, my Dystonia started acting up. My pipe was ready and clean just in case I could go get something or have it delivered. So I went out dressed for spring with my favorite hoodie on. Thanks to that muscle relaxer I took. I was in that bad of shape and have been laying down since I got back. I can relax now and maybe get some sleep.
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.