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.
I did not realize what was going on with me until about 5 days ago. I am not affected by them Opioid Crisis at all even though I do take pain medication. My doctor warned me ahead of time thankfully. I started weening off all pills because of the thought of addiction or a better term for it, dependence. I don’t want to need to take a pill to feel better every single time I am in pain or stiff or etc. As you get order, those pills will eat the lining of your stomach. I have been on some sort of pain medication since I was 12 taking Naproxen. Since 2009, I have been very careful with the amount of medication I take. Mainly because I have a child and need to stay alert when she is under my care.
Dystonia makes you feel old before your time and the treatment can sometimes be 11 to 12 pills a day or more. At some point I had too much medication. And I needed to take most of it to function. Times are different now. Now I have the Marijuana Card or license back, I need less pills. The bad news is that I am purposely weening myself off all these pills. But I am suffering from withdrawal. It is not bad and I had it worse when I was dependant on Klonopin. I had constant migraines. I would have to take a pill just to get some relief. This time I don’t know what pills are causing the withdrawal. It feels like I need something like a cigar, but I don’t. I am a bit jittery but I am not twitching or shaking too much in the day time. At night I am jerking and waking myself up out of my sleep.
I am micro dosing the Marijuana to get me through the day with the least amount of pills as possible. The withdrawal syptoms would be really hard to deal with if I wasn’t able to get the Medical Marijuana. The nausea and vomiting is withdrawal too. That was the warning sign and also a good sign. I am getting this medicine out of my system slowly. If I do it too fast, I wouldn’t be able to afford to smoke my medicine because I would need more. Luckily the growers are trying to help me and cutting me some deals at the shop. They noticed how I was walking and could immediately tell it was my ankles now. I am going to get my compression stockings today or tomorrow and also that blood pressure monitor. I also need to put the prescription in for the water pills because we do know that I am retaining water for sure. What we don’t know yet is the reason why and I don’t think the x-rays will give us the answer although I am still going to have them done.
With this pen and a little strain mixing, I am able to function well through the day with some pain. The pain would be worse if I didn’t vape or smoke something. It is an article out about how dangerous it is to vape oil because of the tar. Tar? It also says that we as consumers do not know what is in the oil. Why we don’t? I know who it came from. A grower who sells to the shop and the shop sells very good oil. It has been tested and they can explain to you what is in it. People are laughing at the article but it does show how ignorant some people can be. I would be more concerned with the Marijuana itself and how it was grown since I am putting it in my body. All my doctor’s support it but one. The pain management doctor who comes to the house. The bottom line is that I look and feel much more alert and functional in the morning especially.
I have been able to get up with my daughter every day before she goes to school. The withdrawal she can not tell. It is not noticable. I can do her hair on one day and mine on the next. I have been doing %80 of everything from my bed because of the swelling. Right now it is my feet. They are puffy. My daughter knows I have to rest a lot and she also knows that my eye swelling up is worse than my ankles. She knows how it feels because it happened to her once and we do not know the exact cause. We do know it was her allergies and she needed to go to the ER. I just use a hot towel but would be so embarrassed if I had to go to work with my eye almost swollen closed. It affects your vision. And I have a droopy eye already that they wanted to do surgery on. I am able to keep my daughter while he is away handling business which I am proud of. I do not want to be absent during the important parts of her life. I haven’t took anymore pictures yet but I got the camera on the phone working better.
I will be adding more pictures to this blog soon. Not of me but of the products we use for our hair and other products I love. The movie section is empty for a reason. I haven’t watched a movie in some time. I have been reading more and playing the game. I still haven’t been able to play Destiny 2 that much. I always choose to play Mortal Kombat XL because I am getting better at it. I am finally used to wearing my glasses now. I usually don’t wear them in the house but I need to start trying more. I need to get up and put them on first. The Dystonia spread to my eyes years ago. My eyes are very sensitive to light. Even the TV and the phones. All the things that we use. I adjusted my devices that I own to my vision needs. The televisions in here are adjusted with more brightness so to watch certain movies, I need to wear the glasses to be on the safe side and for when I am playing the game too. I suffer from eye fatigue. Fatigue period. I can get through the withdrawal syptoms with this vape pen and a few other items that I am going to get. Cleaning my system out at this exact time if very important. At times, I clean all the Marijuana from my system to lower my tolerance. This way, I don’t get burnt out on cannabis.
The doctor told me to use rice in a sock for heat compressions on my ankles. That sounds smart. The swelling has almost completely gone from me just getting some rest but the left over pain is hard to deal with. I also have to limit my salt and switch blood pressure meds to one that is both a water pill and a blood pressure medication. I need compression stockings as well. She ordered X-rays because the pain is mainly in the ankle bones and they should not be so tender to the touch. I am really glad I went to see her even though she is allergic to smoke and was just recovering from an asthma attack which kept her from working for 4 days. I didn’t know her allergies were that bad so I smoked before I went to see her and she was suffering. Like she was in a room full of smoke but nobody was smoking. I made a joke about it but it really wasn’t funny at all. I can’t really vape or smoke before I go see her because watching her cough like that reminded me of my perfume allergy.
The whole bed rest thing is not fully necessary. I need to limit my activity’s if I notice the swelling coming back. My ankle was swollen back up just from going to the appointment in the first place. I was able to get the boots on but it was hard. Luckily these boots are comfortable. It is a lot of snow expected throughout the week. I need to set up all the test that she wants me to have done. She is a pretty good doctor and so far I like going to see her and it is not that far from my house like some of the other doctors I go to.
I have been catching up on Altered Carbon. I decided not to binge watch it. I kept falling asleep on the talking parts and missing all the action. I have made it half way through the season but my daughters’ father won’t let me watch them without him so I would have watched more. It was getting really good. I haven’t been able to play the game because he is still playing Nioh which is just simply to hard for us to play. Me and my daughter tried to take turns from the beginning but we couldn’t get out the building where you start at. It took him two days just to beat one boss.
Our hair is done for now. I will re braid my hair ASAP and put some oil on my hair and scalp. It will be dry in a few days. I have just been adding a little oil to all the dry looking areas. I need to oil my entire scalp next time. It doesn’t look dingy for now which means the plan worked and so did the products I use. My daughter needs Moisturizer every day no matter what I use on her hair. I just re braided hers. Now it looks dry again. Maybe I need a different product. We will see. All it needs is to be moisturized and combed daily since she has that high pony still. She doesn’t like me to comb her hair but her hair dresser is busy and the other one moved. So I have been doing her hair since then.
This vape pen is perfect for me. Of course I got a cheaper one since it was my first time vaping. He says I spent too much only because he don’t vape. The dispensary had old stuff the first time and it was kinda dry. The next time they had better quality. We were running through it because it wasn’t that potent in the first place. That may be why they had it on sale. I will find out when they are getting some more in that is fresh and see if it works better and taste like it is supposed to. Using the pen right now to try to loosen the muscles and dull some of the pain, plus I am doing the stairs. I needed to do some ankle stretches before I got started. I didn’t do too many because I didn’t want to make things worse. I am feeling better today and I slept well. Time for breakfast.
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.