I haven’t updated in awhile so I want to say hello to those few who do follow and read my occasional blog! I appreciate it 🙂 Today I want to talk about Autoimmune Disease a little bit. **The biggest reason I haven’t logged in is to write is because I have been dealing with BOTH**😖😷
The biggest issue I have with my autoimmune disease is that well it’s still under the umbrella of we dont know which auto imunne disease you have yet but in time the more you get sick the more clues we find out.🧐 So my clues are; Epilepsy (possibly), Vasculitis, Celiac Disease…weird combination. Lupus does run in my family so that hasn’t been ruled out yet.
The biggest issue I have is not just the flare ups it’s when they flare up and how often. I do have have insurance but it doesn’t cover everything like state insurance would. I cannot get state insurance because of my husband’s income. We filed bankruptcy before COVID19 hit and since then it’s just been a prayer a disaster to get through the medical bill’s🤯 For example I have one bill that is over 1,000 for going to the emergency room for stomach pain that was out of this world and swelling. This was before I knew it was celiac I thought my appendix was going to burst.
They gave me Ibuprofen and a CT and told me there was nothing else they could do. I was in a wheelchair because the pain was so bad and then they wheeled me back out after sitting in the HALLWAY next to people throwing up 😷 for 3 hours . I will never EVER go back to that hospital. My husband had to call Administrative for someone to help me. Then I later learned its nickname was Kentkillmore Hospital…..
So a few more tests where done I went to a Gastroenterologist and she told me to back to the ER which I didnt want to they tested me for COVID which was negative then I had a colonoscopy and endoscopy which ended short because I stopped breathing…fun times(apparently I have sleep apnea). I was biopsied and told I have inflammation but unknown from where more labs were done and then I get a Phone Call yesterday that my Celiac levels are high. 🥴 So finally some answers after an expensive hunt to find why I could barely walk.
I did start a GoFundMe recently I will share the link! No matter what you go through remember to not give up. I wanted answers and to not be in pain so I could actually enjoy life with my 3 kids.
Here is my GoFundMe link any help counts even a prayer and thank you for Reading! gf.me/u/zkwkxi
Today I waited in line at the dispensary when another person behind me two in particular. He was an older man and he was waiting on his stuff and complaining to get him something GOOD. The young man who works replies its all good stuff and the two go back and forth from there on. The attitude of the older gentlemen was that he wanted help the guy was trying to help him even I tried to recommend something for someone who claimed they were an avid smoker twice and he looked at me like I didn’t say a word and continued to complain. Complain about how long he’s been smoking weed in his words the guy was in pampers and how he doesn’t know anything. So of course my order was wrong because he was nervous, I didn’t complain I knew why he got it wrong. On my way from there back to the car I’m close enough to their car where one shouldnt pull out and he did and zipped out and I had to back up. I knew he saw me and he stopped for a second after I backed up and flew by. I don’t understand how people can say they want a big change in the world however act like a child. On top of other submissive things in the media that portray one message and completely mean another, I can’t even turn the TV on the news anymore because all I hear in the nation is like what I hear around my house a 7, 8 and 9 year old bickering. News should not be a drama fest but factual……
Don’t waste your energy helping someone who won’t appreciate or even accept it ever✌
Seriously who has money for a house keeper? I wish I did but I do know that I use a lot of stuff from Grove Collaborative and it never disappoints I also buy stuff at the grocery store like bleach and windex but when I was looking at the prices of both places online and in the store I decided to switch. I can order when I run out and some of the concentrates last me forever like the one I use on the floor is a multi purpose Meyers cleaner and I have had it for over a year. They carry a variety of things even beauty products. I am not sponsoring them in any way shape or form. I would just like to point out that when you sign up for them its free if you don’t want an order that month they will remind you in an email that you have stuff in your cart. You empty it and wala no order that month and you get free stuff when you order so much. Please feel free to check it out!
**** I will leave my referral link!Which is a FREE SET of Cleaning Products! I honestly still have some stuff from mine I believe the vinegar cleanser 😉 I use it on the floor sometimes the windows and even of really dirty loads of dishes!***
There are many of you out there who have many different types of families maybe some are divorced and some may even be with other relatives. I want to talk about tonight how meeting someone on a common ground on a parenting level is probably one of the most challenging things. If you were possibly in a relationship and had a child then you and your child’s dynamics have a flow to them. When you incorporate a new relationship with more children then likewise their dynamics have been set for everyday routine and behavior, rules, etc has already been established and sometimes there are hugeclashes. In my house I have a rule and personal guideline I followed as I learned growing up with many other kids coming in and out of foster care from my in-laws was that every kid was treated fair equal no matter what. I believe that stuck to me this day because even when one child wants more attention than the other I make sure everyone is receiving the best possible love and care I could ever provide for them. I am a step mom and my step kids love me and they have came a long way from where they were when I first met them. The mother in the previous relationship was and is still addicted to pills which makes co-parenting difficult. The kids would tell me she nods off and mommy burns holes in the floor with her smoking it has been a very sad journey for them but I am grateful to be here for them. I know that without me it would have been a lot more painful for them. I do not feel like I always get the credit I deserve for being a stay at home mom but at the end of the day I’m not looking for a pat on the back. I just want it to be acknowledged that those kids mean the world to me and I do everything for them and their love. They fight and tease like brothers and sisters and I remind them that when they are not here and visiting how much they miss each other every moment. However the hardest and most awkward part for me is when the other parent is spiteful and tells the kids things and only buys their love leaving my son confused. There is no rules at the other house they do whatever they want they talk to their mom however they want stay up late eat junk until they feel sick. This irratates me beyond belief as I’m sure many of you. They actually didn’t establish a normal diet until I was in the picture and still revert back. Sometimes its hard now not to feel like I’m parenting alone anymore. My best advice to any of you co- parenting at the moment is no matter how hard and awkward the situation is please listen to one another. I sat down fourth of July and had fireworks with the other parent and her parents even though we don’t get along. I didn’t mind after awhile because no matter how much pettyness goes into making it a drama fest, its never about you its about the best for the kids. The kids will and do reflect what they see from each parent and I have grown to learn and see that there is no respect on her side because she let’s them and at our house when they come back they have respect and they know they have rules. It is hard and you will undoubtedly disagree on a lot but you will also find a happy middle once you break through that tough awkward barrier!
“She will rise with a spine of steel and a roar like thunder she will rise” – Nicole Lyons
Good morning to all you beautiful people still carrying on and fighting through the pandemic on daily struggles. Today I would like to dive a little deep into those who are suffering immune deficiency and also those who take antivirals. When everything started back in Spring when COVID still was over in China and we knew some of us did that eventually it would be here. For a country to be that prepared for a mass pandemic is unremarkable to me and still questionable to me. However I was going through my own unknown immune issues at the time. I suspected lupus because my mother has it and it showed up on her skin in the same trait it showed up in mine. Tons of testing was done biopsy after biopsy and they finally told me you are a mystery of science. I said excuse me? They said that all my levels are fine however the tissue samples from my biopsies show that there is an underlying inflammatory disease. So after being referred to a rheumatologist on a rash all over my body that I’ve had been trying to figure out for years. I’m talking like purple spots that look like bruises that fade on my legs arms and was rapidly spreading to my torso. The official diagnosis I got was Polyarteritis Nodosa, however they were still unclear what was causing that disease. I had pain in my joints and swelling as well every morning some days my knees where just too painful to do anything. They prescribed me an antiviral even though they were going back and forth on an underlying diagnosis still. What they prescribed was called Dapsome within a week I didnt have any joint pain I felt like my old self again it was beautiful. With the Dapsome I was taking I was also previously taking NAC(N-ACETYL CYSTEINE) and this was on my own research for my own well- being. I do recommend it for people who have low immunity who want to flush their systems and who are traveling right now through the COVID. I don’t recommend taking it every day it can be hard on your kidneys, which is why I stopped taking it. It was a wonderful combination for me and I think after the holidays I may do a week where I’m on it again. I did not get sick and I was tested I did run a fever but was actively taking NAC and it was negative. I still stayed in my house and didn’t want to be exposed or to possibly expose anyone. This supplement helps detoxify the toxins in your lungs and flush other toxins in your body. I will post link for that information. The news was hyping up about an antiviral that was and use in trials. I found that the one I was taking used for that same drug if people could not take it and it was useful for leprosy, HIV patients, as well as malaria. I felt secure knowing I had some backup. I didn’t freak out and buy out all the toilet paper from Wal-Mart. I believe wiping my ass was the last thing I was worried about running out of🤣. I got a lot of canned goods etc, we usually get our meat from deer and grow our own vegetables occasionally we will buy a cow or pig and take it to the amish to slaughter it. I know that some people may find this repulsive and I apologize but it is honestly the only way I can trust what goes in my food anymore. If I am raising the pigs I know that I am giving them the best life before they become too old unlike store bought meats. I would get sick when my kids where in school every time they got sick and even when they didn’t get it that bad I got it worse before taking antivirals. I have not gotten a sniffle other than allergies since starting the Dapsome. I could not be more grateful as for the purple spots everywhere, they are less not 100% gone but also not painful and spreading. It is a hot day in July and im able to do work early in my garden again without pain. Did this medicine save me from COVID? I guess I will never know but I have a feeling it protected me from the worst and to those still out there traveling please be safe. My 90 yr old grandmother ended up struggling for her life and catching it through a nursing home. It was horrifying hearing her everyday struggle through breathing treatments but luckily she was strong enough to get through it! I still see a lot of people wearing masks wrong, it does weaken your immune system which is not what we need but I feel like as a country what other choices did we have we are practically backed in a corner. I also recommend using essential oils daily in a diffuser they have so many antiviral bacterial properties in them that natutarly kill viruses in the air within minutes and keeps your immunity in-tact.
I would like to start off by saying happy July hello and welcome! In this post I will be talking about what I call my peace garden and how it helps with my anxiety.
I stumbled across two books that I could not put down through the dreadful winter months and they were about gardening. The first book I honestly finished in maybe two days I loved every aspect of creating a garden not just because it is a beautiful thing to do but to do it in harmony for you and your soul. To create that space and let the natural flow of different plants and energies of them intergrate and harmonize. Sounds silly I’m sure to some of you but for me this was and still is my escape from anxiety and depression.
I highly recommend this book to anyone I recreated what was a dead garden into something that I now enjoy every day picking herbs for dinner! Oddly I find joy in yard work and a sense of peace working with nature:) This author really inspired me to turn my backyard slowly into an oasis and slowly that is my goal💕
The second book I was introduced by a family member was about Straw Bale Gardening. I had never heard of straw bale gardening before and thought it was odd in the beginning why someone would do this? However I live on the eastern shore and my yard is a sand pit literally you can make a sand castle in the driveway (although I don’t recommend it 😕) So I decided to give this method of growing crops a try this year; tomatoes, peppers, banana peppers, peas, bush beans, sweet potatoes, cantaloupe and cucumber!
So far I love this idea of growing plants in straw bales that have been fertilized/ conditioned for growing. I used 10-10 to get the process going faster and it was more affordable for me. Next year these bales will still be good to use and they are fresh compost so the plants love them! Plus there is less weeds however I do have to pull grass out of the bales but not nearly as bad as my garden would get.
My previous post I have briefly mentioned Cannabis and the use and I want to highly emphasize that I am now legally through MMCC able to use for my epilepsy diagnosis.
I have recently tried the myriad theory which is for those who are unfamiliar a high does of THC and CBD in strains of marijuana. I noticed within the first week that my body was forced to relax. I started with a strain called Tainted Love. It is an Indica hybrid and it is higher in CBD than THC. The ratio that I asked for was either a 1:1 or something equivalent. I wanted to note that the first experience I had was a headache the first time I smoked and it was very little after that I did not have a headache. The other substantial affect is that I did not have any absence seizures since this therapy. I have not felt spacey and I have felt like I can accomplish more during the day when I use my marijuana therapy in the morning. The only downside I had to this is that smoking it burned my throat terribly. I also realized that maybe an Indica would be better at night/evening and Sativa during the day because sativa strains are more dominant in energizing.
*For those curious who have never used cannabis or the myriad theory before yes it will get you high however it is not a terrible experience of paranoia or rapid heartbeats. I cannot have anything to do with whatever type of strain does that to the body I believe some types of sativas do that to the body. Personally for my own benefits triggers are anxious high anxiety so that would not do me any good for healing my epilepsy.
It has been about a month on marijuana therapy and I have had one gran-mal seizure that my husband had noted was the shortest one he’s ever seen. Which is the best news I have heard even though it was hard to hear I had another. I want to also note that my neurologist also suggested taking a new medication that is called Onfi. I take that at night and it has been about 2 weeks. I am very tired on that medicine however I sleep better at night. I noticed today though that I had tremors like someone would be cold. They started in the morning and the disappeared through the evening. A lot of the marijuana therapy helps the downsides of anti-epileptic drug therapy treatment side effects.
I have tried many if not mostly all the AED for my condition. I had Stevens Johnson’s disease with lamictal, topamax made me hallucinate, depakote made my hair fall out. I am sure there are more on that list that I cannot think of but I have also taken Zarontin and Keppra and those two drugs have somewhat helped for years. Until I believe I had built a tolerance for these drugs. I also have had VNS therapy surgery which is a pacemaker put on my vagus nerve that helps stimulate the brain to relax.
There was a time where I was seizure free for almost four years. It is hard to imagine now. That is when I had my son. I am blessed that I did not have any while pregnant with him and he is now 9. He also shows signs of absence seizure epilepsy and takes Topiramate. This drug has worked wonderful for him and I have not noticed a seizure in almost 2 years. We are not all definitely equal and some of us are highly sensitive to some therapies vs others. He actually could not tolerate Zarontin at all when we first were diagnosing and going through treatments.
Remember that not all types of epilepsy are created equal and neither are their cures. I will continue to fight for a cure and a better life for not just me but for all of those who suffer.
Writing has always been a profound type of therapy for me. My mission is to help others in any way through my passion and talking about my passions that help me cope with my illnesses. So whether you are here because you share similar passions in life or whether you like to hear other peoples stories, sit back relax and read along.
“Who am I, really? I prefer to leave that up to the observer, because I will never finish answering that.” –Julie Newmar
It has been awhile since I last talked about my epilepsy and trials with different holistic methods to try. I do indeed still try and use them however my life has changed since then so there are key factors into my triggers today. I got married in 2018 and have 3 step kids and one of my own so that’s 4 kids in the house. One being a new adult seeking college and 3 being in elementary school. A huge age difference for them, however the dynamics of the household seem to flow just like any other. My husband is older than me so that is where the age gap in kids comes from. My triggers like most people have become more around anxiety. Like most stay at home moms there is a level of anxiety and depression that co-exists with the epilepsy and not being able to go any where(2020).
We are indefinitely in a new era of I’M NOT EVEN SURE what seems like the TWILIGHT ZONE to me. We are quarantined, required to wear masks with a virus that came from a bat and riots going around. If anyone did not have anxiety before COVID19 or had a small amount of some. THEY SURE DO NOW.Which my friends is where I am at along with a lot of you stuck at home having WORSE seizures unable to turn up my VNS and still becoming intolerent to my medicine. So where do I go from here? At this point it is obvious that just holisitic medicine for me is not going to be a life saving method. I am still and I believe everyone is still trying to figure out the cure for epilepsy, if there is one. We are also trying to figure out A CURE FOR THE WORLD CRISIS at hand so in the meantime people with a disability like epilepsy fall between the cracks. I know there are other disabilties out there and I am sure that you guys are just as heartbroken with the world at the moment. My last hope and prayer is on Cannabis with THC and CBD ratio. I have read numerous reports about different strains with even ratios cause an effect in the brain that calms the nervous system. I also am fighting my insurance company to take a medication called ONFI. At the moment they will not cover it because I do not have LGS, however I have intractable seizures and have tried everything else. I take Clonazapam as a rescue medication only and I believe it does work. I used to not have auras at all now I have a small seizure before a big one and feel spacey. That gives me enough time to take a rescue pill and swipe my magnet. I did mention that my seizures where getting worse. The last two that I had my heart rate was very high. One my hear rate was 155 and dropped back down and I felt like an elephant was sitting on my chest. That one I fell in the shower and hurt my back on the faucet. I never take a shower alone because of this fear and I’m lucky my husband was there that day. The second one I was eating, I had never had a seizure eating before so I still don’t know 100% if I choked or not, but I survived. It took me about a week to recover from both migraines . When I say neck pain I mean not just my neck but also down my spine.
So today I wait not just for good news in the world but also the insurance company and from the doctor. While I am going through the waiting process I applied for my medical card for cannabis. I do not want to give up on every angle for a fight for a cure any cure. I will be posting editing topics that I have previously discussed about my epilepsy. I think that it is important for people to know the reason why I post information about epilepsy, how it has impacted my life and I would like to hear how it has impacted yours! I want you to know that you are not alone in this endless battle. We can all fight together and come together when we need support, ideas, information or even just dont want to feel alone which A LOT of us do because we are confined at home as well as unable to drive. So please feel free to comment share experience/anything! Stay safe and healthy,Deanna