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I need to vent. I've been dealing with tremors. I'll have hours i am fine, but then others when im tremoring so much my head bounces a little. My voice, while in my tremor episodes, will cause my voice to sound like im vibrating. It is hard to explain in words. I noticed my stutter about a year or so ago. When I talk I will catch myself having to repeat a word because either my mouth muscles twitched or my tongue just decided not to keep moving. During therapy today I accidently blew a raspberry when I meant to speak. My mouth just decided not to open. It would be a lie if I said im not nervous or worried. Being young and sick is sort of like being elderly, except we lack the reflection on all the great things we did long ago...Instead I feel robbed of my childhood. Had "doctors", who dismissed me and made me feel crazy. Ive watched my friends and family make memories, and take strides they will look back on fondly, while I bitterly and silently wait for my chance. Lets be candid and real. I feel like giving up. Ive noticed myself searching in my mind for reasons why my kids would be better without me and my health struggles. They don't need my depressed and lethargic energy. Sometimes I feel like it would be a release. That it is the only thing that will make me feel free of this burden I carry with me, a weight I've had all my life. The last thing I want to do is have my kids watch me suffer and not be a good mom to them. So many things I want to do, that I am scared of doing. I'm scared of going to a theme park or a hike, that I will end up with a painful flare. The stabbing and throbbing pain in all my joints. Random episodes feeling like I am coming down with the flu, only to feel "fine"...my kind of fine anyway, the next day. What is nearly the worst is not knowing when it will strike. Just so you, the reader understands, im working with a therapist and a psychiatrist to get passed my depression, anxiety and PTSD. Chronic pain has plagued all of the memories I can remember...the past 25 years has been a battle. My body wants to give up. I can feel it. My brain is saying give up. If it weren't for modern day medicine I probably would have been dead by now. But, before you send me the number to the suicide hot line, I already know those numbers and I have people to talk too. It just comes with the territory when the entire life you remember has been one ball of illnesses. Physical illness warped into mental illness. Not the other way around. I remember -just bairly- about when the chronic pain started.. I was probably...10 or 11. I was living in California at the time. Parents were divorced but I never remember feeling upset they split. For whatever reason I have never had anxiety about my parents divorce. The anxiety came when new people started to come into my life. People id rather not acknowledge here. Let's just say at some point or another, they caused my family great pain and sorrow. I want to document my daily feelings with a short daily blip of a video. Just a run down of what I am feeling at the moment first thing in the morning. We will see if I end up doing it.

Sometimes I wonder what my life would had been like if I didn't start having chronic pain when I was 13 years young. I will be 36 on Sept 7th..so more than half my life I've had health problem after health problem. Ive been made fun of for missing school, I've lost a lot of friends, I have to be vigilant about what I eat and drink. Sometimes I wonder what type of job I would have. If I got a chance to relive my life without the chronic pain I have...I would become an archeologist and travel all over Europe. Ive grown to love documentaries. Anything history related, I will likely enjoy watching it. On another note, I've been noting random spasms in my face when I talk. Its happening more often now. It makes me have to repeat a word and I can feel a type of spasm around my lips I think. Im having a difficult time figuring out where it is originating. My tinnitus has been super bad lately too. It sounds like a dial up modem or police sirens...or the high pitch of wind getting through a barely cracked window. Its extremely frustrating. I use an air filter fan to create white noise so it will drown out the tinnitus. It doesn't always work but need to try something.

Its been awhile. Mainly exhausted with kids being sick and dealing with some body fatigue and weakness. I've noticed if I eat a small candy bar or something I start to shake and my heart starts to have palpitations. I hope I'm not starting to get insulin issues. I've lost a few pounds. I hate this. I dont feel like myself. Its rough having generalized anxiety. I sometimes feel like the weight of thr world is on my shoulders...but is it? Or is it just me not dealing well with how I feel? Is this something I should practice not being anxious for or should I be anxious? Anxiety is supposed to be the way a brain tells your consciousness if we should be concerned or run the flight or fight response. But someone with generalized anxiety disorder its all f'ed up. Sometimes metaphorically i don't feel like I know what up is vs down. Or down vs up. Then if you reach the ability to be aware of your quirks...but are having a hard time controlling it...are you failing? I know it becomes super frustrating because I know im likely being anxious for no real reason...other than my brain forcing myself to battle my anxieties that I had 24/7 as a child and teenager. I've battled these feelings for 2 decades now. Trying to tell myself to be chill. Being anxious and on the verge of fearful is NOT helping me. Am I rambling now? Yes, for sure.

So I got some wooden dowels, some string and screws. I made a trellis for my sugar snap peas. It was cheaper than buying one. But omg....im so incredibly achey now. I should have taken breaks! I hope what I made is going to last long enough I feel like it was worth it. I know tomorrow I will be feeling the pain even worse. My legs, mostly knee and down are swollen. I'm getting worried how painful its going to be when im even older....I really hope im not going to end up in a nursing home in pain waiting for the day I die. Im only in my mid 30s and im acting like I remember my grandparents did when getting up and down from sitting and doing things for too long, getting tired. It feels like my muscles are growing. Im curious if its a type of connective tissue condition. Gardening is really one of a few activities that gives me joy and a sense of accomplishment. Besides being a mom. Sometimes when its super hot out i will wait until sundown to water them. Heh. I think im going to try an Olla but make one out of terra cotta pots. Apparently its water soluble??!! The soil will leach the water from within the pot if it gets dry enough. Its amazing science really. Maybe I can get a few small ones and try them within my 20 and 30 gallon fabric pots. It would be great if I didnt have to go out into the horrible heat we are having lately. My watermelons are loving it though. For reals. Moved my peas to a less sunny area. I've read peas like full sun BUT only if its between 60 and 80 degree weather. If its super hot AND sunny the peas will not grow as fast as they are able. Crossing fingers moving them was a good idea. I mived the sun flowers to wear the peas were though. I have mammoth sunflowers growing. Im excited about them and getting sunflower seeds from them. Two of my kids love them. Gonna try to read and go to bed. Crossing my fingers I get lucky and the pain won't be horrible tomorrow. Sunflowers 🌻 , butterfly and hummingbird flowers

Well I went out to have breakfast for fathers day with my family and went to the grocery store and got home. Realized my throat is hurting. Its not a usual hurt either. This is the type of throat pain I get before I have an EBV flare-up and I know I need to take more valacyclovir. I usually take 500mg nightly but if I think im about to flare or have flaring up symptoms I go ahead and take 1000mg or sometimes 1500 mg. I'm going to go ahead and take 1000mg now and my usual dose later tonight. Other flare up symptoms i am experiencing are body aches and pains. My arms feel heavy and ache. Sometimes it will make my interstitial cystitis flare up too and that causes my bladder to spasm and I have a hard time urinating. Its like it is spasming so much it won't release and allow anything to pass. It is the symptom I had when I first found out I have EBV. I couldn't pee for 2 days. Not enough anyway. I had to go get catheters and have my urologists nurse help me and figure out what was wrong. Came back EBV was flaring up and I had no idea what it even was. I'm not embarrassed to talk about this because I know im not the only human to have these problems. And I want whoever has these symptoms to know you are not alone. Anyway I can tell because it will feel like I have the flu. Im starting to feel the weight of my body becoming heavy. If this is truly a flare ill likely become extremely fatigued for a couple days and not want to eat much. Lots of water though. If you notice I had a decent amount of days feeling pretty good. Then without warning a red flag pops up with my throat (always on the right side) starts to hurt. Here we go. Ill update as it progresses. I warned my partner im having a flare up most likely just so he knows and he is aware of it. I sometimes get short tempered because I'm not feeling well for one, and I become frustrated with my own body and will sometimes spiral into a self loathing. Its hard to accept this type of disease. So starting around 12pm I started the throat pain, right side. From my throat up to my right ear. Feeling extremely fatigued and slightly nauseous. Gonna go take the valacyclovir and advil and lay down.

So I found these awesome to go toothbrushes that have some paste in the middle of the brushes. I keep a bag next to my bed, in my car, in my office and in my purse. Due to medications I have taken through out my life, I have had dry mouth side effects. That alone can cause tooth decay and cavities and a weaker enamel. I have become much more aware of my teeth and mouth being dry by using these Colgate to go toothbrushes. I've had to have 3 root canals and several cavities filled through my life and its not because I didn't brush but my mouth was so dry all the time. There are lozenges that stimulate saliva glands to produce more saliva and those work fairly well.

I have had bladder pain the past week or so. My lower back is hurting like I might have an infection but I got it checked and I dont. So now I know its my interstitial cystitis flaring up making my bladder feel heavy and a dull pain in my lower back. Hurts to lay down alot of the time. Since I've felt these pains I've been extra careful not to inflam it. No acid foods, etc. Its stirring up some PTSD. Im a little worried to go out and enjoy myself. Im scared I will end up with a full on flare. Why does this condition have to be so damn painful and unpredictable!? Im hoping i can walk the square a little and get some grocery shopping done. Im trying not to use any delivery service to save money and frankly, I miss walking around the stores and browsing and doing it on my time. Crossing fingers I dont start to flare so I can have the best day I am able to have. On other news, my jaw has finally shifted with the retainer im using so its closing evenly on both sides! Before when I closed my jaw would hit on my right side first and then my left side would follow. My jaw joints were not opening and closing in unison causing me a lot of headaches and pain in my jaw. I even had some swelling. I am really excited about it. Soon I will be likely wearing braces to try to keep it the way it is. I can already tell by the lack of headaches I've had. The pain has gone down significantly and I only have a clicking noise in my right jaw joint which is great considering. So happy with the results so far. Well wish me luck. Gonna start getting ready for the day. My watermelon is growing super fast.

Some people don't realize a person they may talk to everyday could have a chronic pain condition/disease. Here are some unflattering photos of when I was having a flare. Chronic pain is real, and it can be debilitating.

I started 3mg not long ago. So far I've had very vivid dreams...its a common side effect of LDN. I was almost to scared to try LDN because of it. Ive had reoccurring nightmares most of my 20s. And these days I haven't been able to remember them. I get maybe 4 to 5 hours of sleep these days. I know...its not good. Im sure ill be more productive and feel better if I got more sleep but its hard when you are ADHD. Anyways, I remember the first vivid dream after I started LDN...when I woke up I laughed a bit. My partner and I bought a bed and breakfast and we had 3 kids under 5 years old. He was outside fixing a playset for the kids when i was inside the building helping guests find their rooms. I remember being super happy and no stress. Then it flashed to a propeller plane crashing into the bed and breakfast! Say what??? You are likely thinking I said it was a funny dream, but how can it be a good dream if a plane crashes??? Well after the plane crashed into the building I find everyone okay and coming through the wreckage. Then I see a few people on a wood plank floating down with a table cloth as a parachute! The guests were so upset and sad for us and the pilot kept apologizing. I said with my hands outstretched in front of me, "Its okay! My husband can fix that!". Lol. This building was demolished. Nada. No way. The way I said it with such assurance was funny. I'm not good at telling stories if you haven't noticed. I leave that to my significant other. English isn't even his first language but he is much better at grammar and spelling than I ever will be. Anyway, LDN does give vivid dreams. Thankfully mine having too crazy with nightmares. Ill take the positive dreams anytime though. Also, I get my retainer for my lower jaw adjusted again tomorrow. Crossing fingers we see improvement. I can tell you I have felt the improvement in my jaw joints. I havent had any clicking or suction feeling. No cracking either, which is nice. My jaw used to open with my left jaw joint first clicking and then my right jaw joint would follow. It was really painful. Now I can open my jaw and both sides feel so close its hard to decipher if they are not even. So that is great. Less headaches, less swollen face. I started reading a book called Fable. Its in the Reese Witherspoon book collection. Its got me hooked. A girl being stranded on a small island by her father after her mother died in a ship wreck. Now she is older and will make it off the island to find him. Apparently he is a big honcho pirate trader. Its a fun read. Have a good night.

Augh this is gonna be short. My legs are swollen. Been putting them up the past couple hours. I moved from 2mg to 3mg of low dose Naltrexone. So crossing fingers that works. LDN in the beginning can give very vivid dreams. Ive had some intense ones about being late for work, and a few about my kids. Its been intense. Finally getting close to cleaning all the clothes. The mound is gone. Still a lot of folding and giving away clothes that don't fit the kids anymore. I realized I dont have casual shirts... Started listening to a new audio book called Fable by Adrienne Young. Its got me sucked into it. About a young girl ditched by her merchant father on an island. She grows up and leaves to go find him. Pirates and the like. Love it so far. I decided I need to get away from screens towards the end of my day so my partner he got me the actual book to read. Feels awesome holding an actual book.

So apart of my emotional and mental health and a little of my physical health goes into gardening. I love watching things grow and progress and know I was apart of it. So here are some plants im proud of. :-) And yes, I talk to them and tell them they are growing! Website of peer reviewed studies of gardening and mental and emotional health.. Gardening for health: a regular dose of gardening Richard Thompson, past president Gardening for health: a regular dose of gardening.pdfDownload Strawberries Lillies and mammoth sunflower babies, the sunflowers will get their own pop eventually. They will be massive, hence "mammoth". My baby peas are growing and learning to hang on :-) My watermelon is finally starting to kick off now that there is consistent hot weather I have about 4 dozen blackberries on this. Doesn't look it but they are there! My other pea plants. We love our peas here. Harvesting them is fun to do with kids.

I've gotten a lot of feedback about how im "brave" to talk about my never ending health issues and mental and emotional health because of it. Well I'm here to say thank you but I wish it wasn't something that downgraded someone. There are more people out there who have these conditions than you know. They just either don't want to talk about it or haven't had the right time to open up and talk about it. Whether its a physical condition like breaking an arm or a head injury like a concussion, mental and emotional injury is real. My mom says I was a really happy little girl. Most peoples physical illness causes a secondary illness that relates to his or her mental and emotion state and lowers a person's wellbeing and livelihood. For me, the pain I suffered and was unable to get help right away for, caused me to have secondary conditions like depression and anxiety. I have social anxieties for a whole other reason but I doubt I'll ever talk about that openly. I do have my limits surprisingly. I digress. I want to help people. No one deserves to suffer like I did. And im not saying that because I feel "sorry" for myself. I deserve to be angry and upset about how adults around me, failed me. It took a long time for me to forgive my parents. I went through a phase of anger. I didnt show it at first because I didn't want to talk about it, but I truly felt betrayed in a sense. I was inpatient and fatigued and in pain already, I didn't want to go and cause even more issues in my life. Forgiveness. As I have gotten older I have realized that my parents had their own things going on and I had to remind myself they are humans and to find peace I had to find a way to forgive. My main reason for being open about all of this is because I didn't know anyone who was going through what I was going through. Im in my mid 30s now and I didnt have online support groups or YouTube for information, or dependable internet to find good advice. I had to leave the room when I was getting online with the screeching phone dialing. Remember how terrible that sound was and how impossible it was to sneak onto the internet? I was obsessed with sailor moon and I read all the background stories, etc. I would frequently wake up from pain and want to read but nope. That damn screeching would wake up my mom and that wouldn't be good. I know you get me. I didnt have a name for my pain until I was 18. When I was 18 I went to my gynecologist and I just ended up crying. I was extremely emotional and exhausted and having "flares". So what exactly is interstitial cystitis? Interstitial cystitis is essentially an ulcer affecting the lining of the bladder. Some have spots of ulcers, and some who have severe "IC", the whole bladder would be affected. How i got diagnosed is considered inhumane now. For reals. Imagine having this condition. And doing a cystoscopy in clinic with no anesthetic. The idea is to first insert a thin but still as wide as a pencil tube into the urethra. Yes, we are all adults here. (This is the way you see inside the bladder.) And then the doctor would make sure to drain the bladder. The inhumane testing for IC was this: he had two solutions of liquid. One is water and the other is potassium. Yes. Potassium. The patient is not told which solution is what. Depending on how you respond is how you are diagnosed or not. If you are in pain with the potassium test solution, you are more than likely to have IC. I remember this test vividly. Even after nearly 20 years. I started to cry and nearly fainted from the pain. I even yelled, to my doctors horror, "GET IT OUT OF ME!". I am certain his other patients heard me. I didnt feel bad about it though because shit, now I have a huge flare up and I couldn't sit properly the rest of the day. The pain lasted for nearly a week. It was the worst flare I had ever had. But, I had an answer to my pain. I had an answer and I wasn't crazy. I have had a legit painful condition for nearly 10 years with no idea what was going on. The doctor said, "your bladder is as red as an apple. I could see the nerves and veins and you have no lining to protect them, as far as I can tell". He apologized for the pain I suffered from. So whenever I drank something or ate something, whatever ended up in my bladder, my nerves and veins were exposed to it. After the procedure I couldn't pee for nearly an hour because my body was resisting due to me knowing it was going to sting to let the fluid out. I personally don't think he thought I had IC. He gave me reading material and what I shouldn't eat that could cause flare ups. No 🍅 tomatoes, and nothing citrus. I love oranges. I would sit with my dad and watch a movie while we peeled oranges 🍊, and ate them...duh. Nothing spicy or juices. Especially not cranberry juice. The one juice everyone was telling me to drink. Because I was determined to stop the pain to the best of my ability I lost about 15 to 20 lbs within a 6 month period. I ate the blandest foods. I also started the only FDA approved medication to treat IC, Elmiron. I took it for 2 years, 3 times a day. I started to develope a rash from the sulfa ingrediant so I had to stop taking it and just crossed my fingers to let my body try to heal the rest on its own. I was so scared. I started having flares again. Not nearly as bad as I used to before elmiron and my diet change but I started getting scared I would go back to that. I wouldn't had been able to handle it if I did. I dont know if I would still be here if I had not been diagnosed. My life was wake up in pain, fall asleep in pain, and at its worst, dreaming in pain. My mental state could not be fixed nearly as fast as my physical self though. I was still hesitant to go see a doctor for any reason. I had this constant fear I would be judged before actually checking me, like I had before I was diagnosed with IC. And 20 years ago I had to educate the doctors I saw for other things, what it was. Its only just the past 10 years or so it became a better known painful condition. My PTSD started to get worse because when I felt good, like I said in another post, I was scared I would start having that pain again. So I could never really enjoy my life. My life starting around 11 or 12 was dictated around this painful illness. It wasn't really mine to have dreams or decide what i wanted to do in life. I had a dream of doing archeology, but I knew it was just a dream...nothing more. I wouldn't even try to make it work. For those who don't know me im obsessed with Indiana Jones. I have a huge poster in my office of the last crusade my boyfriend printed for me. Anyway, if I had my way and nothing stopped me I'd probably be digging in another country looking for long lost artifacts. But with a painful bladder condition that is more random than not, I could not chance going into that type of work. So I became a pretty good office worker. Thankfully computers came natural to me, especially since they became the future for everything. Decorating ain't my thang I think I will stop here and if I think of anything else I'll add it later. I hope you find comfort knowing you are NOT alone.