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I know it’s the end of the month but we’ve had things at home going on, things are kind of all over the place. But May is Lyme Awareness Month. Some of you know that after I had Fumiko I was diagnosed with chronic lyme disease. You can read my first post about lyme disease here. Since then I started seeing a doctor at NARA a few years back who re-tested me because she just sort of thought I was crazy. Text came back “negative” so now I don’t have lyme, even though, I believe I still really do. My current doctor is another doctor from NARA and she’s just gone along with the previous doctor. So now I’m on 14 medications and being treated for lots of individual symptoms but I still have no real diagnoses. Though they’ve looked at fibromyalgia, chronic fatigue and rheumatoid arthritis again. Now I worry about my kiddos more since it can be passed on. Since I was bit when I was 8. Well obviously I had it for both pregnancies. I’ve learned that lyme in children can show up as ADHD and autism. Two things both of the children have recently been diagnosed with. I’m going to be talking to some people at NARA I’ve been working with about Lyme to see if maybe they can help me find someone more knowledgeable about it. Some days are okay, other days are bad. We’re just taking every day as it comes. I’m still trying to recuperate from the walk we took last week. Sad I know. My body is still pretty much screaming at me. Since my last post is a little over 4 years old I just wanted to give a little update. I recently printed out a lyme symptom sheet to mark what is going on to take into my doctor and have with me when I talk to some others at NARA to give them a better idea of what is going on. I don’t know how it will help but hopefully it will. Symptoms come and go and change every so often. But they’re always there. Some are constant and just don’t go away. Some go away and come back. I’d like to find someone who can help me and run proper tests. Here’s to hope.

Symptoms of lyme:

Head, Face, Neck

  • Unexplained hair loss
  • Headache, mild or severe, seizures
  • Pressure in head, white matter lesions in brain (MRI)
  • Twitching of facial or other muscles
  • Facial paralysis (Bell’s Palsy, Horner’s syndrome)
  • Tingling of nose, (tip of) tongue, cheek or facial flushing
  • Stiff or painful neck
  • Jaw pain or stiffness
  • Dental problems
  • 10. Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light
  • Flashing lights, peripheral waves or phantom images in corner of eyes

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sounds
  • Ringing in one or both ears

Digestive and Excretory Systems

  • Diarrhea
  • Constipation
  • Irritable bladder (trouble starting, stopping) or interstitial cystitis

<li>Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

  • Bone pain, joint pain or swelling, carpal tunnel syndrome
  • Stiffness of joints, back, neck, tennis elbow
  • Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

  • Shortness of breath, can’t get full/satisfying breath, cough
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Endocarditis, heart blockage

Neurologic System

  • Tremors or unexplained shaking
  • Burning or stabbing sensations in the body
  • Fatigue, Chronic Fatigue Syndrome, weakness, peripheral neuropathy or partial paralysis
  • Pressure in the head
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness, difficulty walking
  • Increased motion sickness
  • Light-headedness, wooziness

Psychological Well-being

  • Mood swings, irritability, bi-polar disorder
  • Unusual depression
  • Disorientation (getting or feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Too much sleep, or insomnia
  • Difficulty falling or staying asleep
  • Narcolepsy, sleep apnea
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (short or long term)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Difficulty finding commonly used words
  • Stammering speech
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive
  • Sexual dysfunction
  • Unexplained menstrual pain, irregularity
  • Unexplained breast pain, discharge
  • Testicular or pelvic pain

General Well-being

  • Phantom smells
  • Unexplained weight gain or loss
  • Extreme fatigue
  • Swollen glands or lymph nodes
  • Unexplained fevers (high or low grade)
  • Continual infections (sinus, kidney, eye, etc.)
  • Symptoms seem to change, come and go

<li>Pain migrates (moves) to different body parts

  • Early on, experienced a “flu-like” illness, after which you have not since felt well
  • Low body temperature
  • Allergies or chemical sensitivities
  • Increased effect from alcohol and possible worse hangover

 

Ii’m a ball of fun. xd My kids don’t even blink when I ask them how to do something because I forgot. Like forgetting where the can opener is or forgetting how to use it oops.

Watch Under Our Skin. It’s a great movie and explains a lot.

 

 

Luna

∘;

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Soo. Life in general updates. I got my broken tooth taken care of today at Chemawa. Kharizma picked me up at 6 :3 0am so we could be there by 7 :3 0. At least it was quick. It was the really bad one that had broken off to the gum. Surprisingly it was much more simple than I’d imagined it to be. The dentist and assistant were super nice. They took an x-ray and it looked like the root of my tooth was touching my sinus something cavity. Hopefully my sinus infection will finally clear up. I’ve had one since November. d= I need to have an exam so I can start scheduling appointments instead of just being a walk-in. So hooray one less annoying and painful tooth thing.

In about a month I’ll be starting a lyme protocol. I’m not too hopeful. Nothing has helped much and my health is progressively getting worse. Today while filling out the application again, I forgot my address, I forgot my phone number, I forgot my social security number and I couldn’t recall the date after I was just told. The shaking and twitching is getting worse. I pretty much can’t write anymore. It looks like chicken scratch. It’s just really upsetting and depressing. Everything is so hard, all the time. I was recently put on Paxil, just a low dose 10mg. Right now I’m not sure if it’s helping, but it sure makes me feel drunk and drugged. I’m hoping that will wear off after a little while. I got approved through Project Access to see an endocrinologist. My appointment is on September 13th if I remember right(which I probably don’t. lol). The cardiologist was no help. All they told me was what I already knew. I have tachycardia which is a likely result from the serotonin syndrome. After the endocrinologist is the neurologist. Much fun.

And there goes my mind jumping from subject to subject. I’m not looking forward to the lyme protocol, or how sick it’s probably going to make me. I kind of dread it, but I need to at least try, what if it helps? I would be happy to just have the progression stop. I don’t even care if it makes anything better anymore. I’m tired of falling, I’m tired of hurting, I’m tired of the emotional roller coaster I’m on, I’m just tired of everything, but I’d be happy to just stop any further progression, at least for awhile. Just bleh. Life’s a bitch sometimes.

Kai just randomly came in our room with a towel and a bag of ice and a work shirt. So I asked him what he was doing and said that this was not making sense. And seriously was utterly confused. Then he said he was going to do laundry and had been sitting on the ice wrapped in a towel all day. How I did not notice this is beyond me. But okay.

Since Sascha is home now we’re trying to get prepared for school. I’ve been trying to call to see which school he’s supposed to go to since there are two an equal distance away from us. So after not getting a call back after a few messages from the school district I left a message at the school. Still no call back. I may have to try to get a ride to the school so I can physically go in and talk to them. Sascha has outgrown all of his jeans. I don’t know if he had some sort of growth spurt or what but they’re all too short, and his shoes are too small. His toes are squished at the end of his shoes. d=

Children… oh my. It’s been complete and utter chaos. xd Between them both being stubborn and all the sick, oh man. It’s been crazy. They definitely need time to adjust. They’re 6 years apart. Fumiko missed him and wants to play with and on him, and he doesn’t want to play with his littler sister and just wants her to leave him alone. I’m not sure who brought home the sick but everyone has been sick. d=

So uh this is longer than I anticipated and I’m not sure if I posted all that I meant to. d= Damn brain. Oh well I can always make another novel, I mean post if I remember.


EDIT/Oh yeah. We have a new cat. His name is Zero and he’s super sweet. My best friend ended up having to move and couldn’t take either of her cats with her. So I volunteered to take Zero if he adjusted to new surroundings. And he’s totally fine. Mochi still hisses a bit at him but they play. He’s giant too. Like SERIOUSLY GIANT. He weighs 19 pounds and he’s not done growing yet. Mochi weighs 5 pounds. lol Do that math. He’s a big fluffy lug of a potato sack.

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I think this post is long overdue. xd So Sunday evening Sascha arrived home. :d We picked him up from the airport around 10pm. He looks older and more mature. It’s an odd feeling seeing that. He’ll be 12 November 2nd. It doesn’t seem like it’s been almost 12 years since he arrived. I think Fumiko and Sascha may end up killing each other. xd She misses him and desperately wants to interact with him and he doesn’t want her to annoy him. They spent 2 years apart so I think they just need time to adjust. They’ve pretty much been the only child for the last couple of years. They seem to interact a teeny bit better every day. I have to call to see which school Sascha will be going to and get his school info from his dad. Fumiko’s birthday is too late in the year so she’ll be starting kindergarten next year.

The kids are already excited about Hallow’s Eve. Fumiko has decided she’s going to be one of the following: a faerie zombie, a bat or a cat zombie. Sascha says he’d like to be a zombie too. YAY. No more transformer costumes. xd I’m excite that they want to be something that we can make and make it awesome. Also I’m excited about painting their faces. ^.^

I have to admit I’m so desperately looking forward to Autumn and Hallow’s Eve. I just feel so much better during Autumn. It’s like it touches my soul and I feel emotionally put together. Which I’m not right now. d= I saw the cardiologist who had no answers for me yet again. I just got approved to see an endocrinologist at OHSU. Hopefully they can figure it out. After that I need to be approved to see a neurologist. It’s pretty much been, see the dr every week, therapy every week and nurse practitioner every few weeks. Lots of blood tests and pee tests and other random tests. It’s tiring, especially when you’re already feeling crappy. We’ve been reading about a new-ish protocol for Lyme disease.

It’s worth a try. It would be nice if it would just stop the progression. I don’t have any hope that I’ll get better, or that the things that are broken right, will get fixed. It just feels hopeless. Nothing works. I just don’t know anymore. :( I literally put on eyeshadow on Sunday to get Sascha. It was the first time since my heart attack that I’ve put any makeup on. Everything is just so exhausting and hard. I feel pathetic that my mom has to basically watch me so if I fall or suddenly get sick she can help me. And even more pathetic because Kharizma had to come sit with me one day while my mom had an appointment because I really shouldn’t be left alone. It just sucks. ALL of it sucks and Lyme disease needs to go die in a fire and leave me alone. WTF
Luna

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^this. So hard right now. I’ve been stuck mostly in bed the last few days. The augmentin is kicking my ass and then some. d= I have lots of pretties to swatch and play with and I just haven’t been up to it. Sad day. I’m on the augmentin for 21 days of hell. Woo. Tomorrow morning I see the cardiologist and Tuesday morning I see my doctor. I shall attempt to put on my face tomorrow. We shall see.

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So on Friday I had a heart attack. Fast forward to yesterday when I went in to see my therapist/doctor. My therapist was worried and traced down my doctor who had the nurse call 911. They got there in minutes, They did an ekg and it was showing tachycardia yet again. I gave my purse and phone to Kharizma and they told her where I was going. This was my first ambulance ride and let me tell you I can do without. They put an iv in my left wrist and hooked me up to another ekg. On the way to the hospital they gave me 2 nitro and that helped a little but I still had pain and pressure in my chest and down my left arm.

Kharizma got to Providence before we did. It was a storm of taking blood, asking questions, taking my clothes off and I can’t really remember all that happened. They put a regular iv on the inside of my arm about halfway between my wrist and elbow. They gave me a shot of something which sped up my heart instead of slowing it down. A little bit later they gave me another shot which seemed to help slow my heart down. I won’t give you a blow by blow because it’s boring and pointless, so I’ll just say I hate going to the hospital.

I got home last night, I only stayed in overnight. But ugh. 11ish holes later, chest xrays, ekg’s, ecg’s, a catscan of my chest and dye injected, an angio and various other things that I can’t remember. And everyone tells me they don’t know why, there are no blockages or damage. So they don’t know why it happened. They don’t know why my pulse is up or certainly why we’ve been fighting with it since January.

I have to explain my lyme disease to everyone in order to explain my constant pain and the twitching, shaking and spasms. And then they stare at me like they have no idea what I just said, or stare at me and say “interesting” “huh”. It’s incredibly frustrating to be told the tests came back fine and we don’t know, over and over. It’s even more frustrating to have a doctor tell me that sometimes there aren’t any answers and things happen and they never know why.

So yeah. I have no answers at all. I’m tired and exhausted and I think I picked something up from the hospital. My lymph nodes are all swollen and sore and my body hurts worse today than it normally does. My stomach is cramping and has shooting pains and I have a fever. Yay. So that’s my bitchy post for awhile. I apologize if this post is all over the place. My brain hasn’t been functioning well for awhile, and it’s been even worse since Friday.

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I’ve started my new antibiotic, Clindamycin. It’s already kicking my butt. There probably won’t be many posts in the next two weeks. Right now my hands are shaking like a mofo, my right ear hurts bad and I can’t hear out of it. When I move at all or stand up the room spins. My stomach is killing me and I feel like I have poison running through my veins. It’s cloudy and dreary outside and it’s killing my eyes/head. t.t I’m so glad I have sunglasses.

So yeah my antibiotic is killing me, I most likely won’t be up to posting. If anyone would like to do a guest post please email me. :)

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So Happy belated Easter and stuff. I just discovered that Fumiko and I are allergic to dandelion flowers. Awesome. After she rubbed them all over her and scattered petals and bits all over the floor. Changed her clothes, wiped her down, threw some clean clothes on her, gave her some children’s Benadryl and vacuumed the crap out of the floor. As for me I used my nose spray since I already took my claritin of the day.

So it appears that my pancreas is starting to work again. My bloodsugar has been staying below 250 most of the time. That’s better than over 600, yeah? I’m still waiting on the results for the holster monitor. I hope they can figure out why my pulse is staying up. I’ve been dealing with tachycardia for months now and my doctor has no idea what to do with me. I need to go down to Salem to visit Chemawa. My doctor says I need to get there around 7-730am so I can sit and wait for a cancellation so I can get in to have my teeth looked at. :( Since I have diabetes they’ll continue to see me and let me schedule appointments. I just need to get in once to begin with. I brush my teeth and plaque starts to build up within a couple of hours. Between the lyme disease and the dry mouth from my medications, well my teeth are royally screwed.

Tomorrow I go in to see both of my therapists. Should be fun. Finances are still shit. Kai is still getting minimum wage. They started training him for sales last week but he hasn’t been officially promoted yet. d= Also I stopped the Abilify it seemed to be making my sleep worse. Though now that I’ve stopped it I feel panicky. My doctor doesn’t want me on anything, but I need something. I know when I need help and I need help. I can’t take SSRI’s so I don’t know if they’re going to find something that helps. I keep seeing myself years down the road still breaking down and crying at the drop of a pin. I don’t want that. And now I’m crying. *sigh* CRY ALL THE TEARS.

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I guess a blog post is due, eh? So yesterday this happened:

Heart holster monitor


I now have a heart holster monitor strapped to me thanks to the Providence heart center. No showers for two days. Ick. I qualified for Project Access so now I can see the specialists. So I’ve been on 4 different antibiotics since Thanksgiving to get rid of whatever mysterious bug that was making me sick and causing a long sinus infection of doom. For the first time since living here my allergies have become so bad my doctor actually prescribed me Claritin and Flonase.

My current list of medicatons?

  1. Gabapentin 1800mg 3 x a day.
  2. Flexeril 10mg 2 x a day
  3. Atenolol 25mg 1 x a day
  4. Drisdol(Vit. D) 50,000iu 1 x weekly
  5. Simvastatin 20mg 1 x daily
  6. Abilify 10mg 1 x daily
  7. Lisinopril 10mg 1 x daily
  8. Loratadine 10mg 1 x daily
  9. Aspirin 81mg 1 x daily
  10. Hydroxyzine 150mg 1 x daily
  11. Metformin HCL 500mg 2 x daily

Much fun. xd I’ve been working on earrings, I have some supplies coming for necklaces. If I can sell a couple more earrings I can get the rest of the supplies I need for necklaces. :d Yesterday Kharizma picked me up and treated us to Black Rock coffee. Oh goddess it’s SO good. I got a white mocha caramel thing, next time I think I’ll try it cold, it was good hot though. Also the girl who gave us the coffees got them backwards. xd Then we went to Providence so I could get the little machine strapped to me. Then we went to Sushi & Maki and Kharizma bought lunch. I had a spicy tuna and crab roll and a fire ball. Mushrooms stuffed with cream cheese and spicy tuna then tempura fried. Mmmm. Then we stopped at Payless shoes and looked around, then Michaels, then home I came.

In car news our Durango yet again, has died. We took it into Dawn’s friend on Monday to check it out because the thing that DEQ uses for a smog check had no power going to it. The electrical went wonky the previous week. The back windshield wiper, inside lights, radio and mirror adjuster things stopped working. *sigh* So we took it in and we apparently missed one fuse. He replaced it and checked it and power was going to the DEQ thinger. So we came home and later on Monday went to go to the store for my mom and the car is dead. Dead, dead. No power at all. Nothing happened when Kai tried to start it.

So Ben tried to jump it. Nope. Didn’t work. It sounded like it wanted to start, but it refused. *sigh* So I have no idea. Kharizma suggested getting a cheap $500 car when we can and just use that until it dies. I agree with this idea. We just don’t have $500. We has nada right now. I have to call Dawn’s friend today to see how much it will cost to look at and fix. Hopefully it’s a really cheap fix. :( No buses run out to where Kai works. Thursday nights are really the only problem picking him up because Ben has a thing that night. Kharizma and Dawn have been helping pick him up. But yeah. Dead car = oh shit.
Luna

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Yeah I couldn’t think of a title. Sooo things have been rather crappy, and I’m rather tired and ill. I’m still getting over the serotonin syndrome. My pancreas is non-functioning right now because of it, but my doctor hopes with enough insulin therapy it’ll be able to heal. I also managed to get strep, and then pneumonia. The antibiotic I’m on right now is kicking my ass, I swear it’s making me worse. I’m sure it’s just me herxing on it that makes me feel like death, but bleh. My period also started AGAIN on the antibiotics. :( Double, no triple whammy? I don’t know anymore. I feel like crap.

On that note, a lot of the stress and anxiety and fear happening right now is due to our financial situation. It’s been really hard, we’re lucky Kai found a job, but it’s only minimum wage, and his first check was $245 if I remember right. He gets paid weekly, which is nice, but he needs to get promoted to earn more monies. His check isn’t going to go far when we have $700-ish in shut off notices, and $1150 for rent all due on the 15th, and our bank account is completely drained. :( I don’t know what’s going to happen, or how we’re going to make it and it’s really scary. At this rate we need a miracle. Between feeling like crap from the lyme, and the period, and the pneumonia, and this, ugh. My nerves are shot and it’s all I can do not to cry all the time. I know it will work out, but right now it seems hopeless and I feel hopeless.

Things have been getting worse from the lyme. The numbness and nerve sensations are getting worse. The other day the left side of my spine was completely numb from my lower back all the way up to my neck. I’m taking 1600mg of Gabapentin(Neurontin) three times a day and still having numbness and the sensations. :( Last time I saw my doctor I told her I’d started taking two tablets three times a day and she basically said to do what works. She’s afraid to put me on anything, and wants me to stay away from anything that can cause serotonin syndrome because it would likely kill me if it happened again. :( She only mentioned 5 or 6 times at my last visit that it’s usually fatal, and that I was lucky. It’s probably been building up over the years and the cymbalta just pushed it over the edge, still I feel paranoid now. I’m hoping I’ll feel better soon. I’m tired of feeling this ill and tired of being useless. I’m making myself do a look tomorrow, I guess it would be later today. I didn’t do my last challenge because I was too sick. I don’t want to miss it again. Anyways. Enough crap. I leave you with a cat picture. After all it’s Caturday!

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Beware, there is blood… and lots of bitching…

Sooo. I ended up going to ER yesterday. My blood sugar wouldn’t come down. Between the withdrawal from cymbalta and the herxing from the doxy I felt like I was dying and going crazy. I wasn’t planning on going to the ER, but several people that I now hate( &LT;3 ) threatened to either call 911 or come pick me up. :( So I reluctantly went.

It took them 6ish hours to get my blood sugar down to 245. I had several EKG’s because my heart and pulse were going crazy. They gave me two bags of fluid, insulin and anti-nausea medication which made me sick. That photo up there? That’s after the nurse cleaned my arm up and after she took the iv thinger off to try to give me insulin through that part of the thing in my arm. Unfortunately all that happened was my blood went all over her. She wasn’t wearing gloves either. There was blood all over my arm, all over her hands and arms and all over the floor and the side of the bed. Ugh.

Anyways. I hate the hospital. My mom ended up telling the admitting nurse that I took 10 units of her insulin to try to get my blood sugar down, which resulted in the nurse chastising me about taking other peoples medications all the way to the room, thanks mom. After we got to the room I had to strip. Lucky me I thought ahead and wore my hippie dress that has no straps. Nurse gave me the XS gown… which fit like half of my body. So she had to get me a new one. Gown down. Then she tried to insert an iv and take my blood. *sigh* I hate this part, so much. She poked me once got a whole syringe of blood out but the iv wasn’t working, or something strange. So she thoroughly checked both of my arms and then tried again just above her other attempt. NOPE. So another nurse came in and she asked her to try. She got it, then inserted the iv thing extremely slow. I swear it felt like it took an hour and it hurt as much too. So she got it in and then tried to put the blood the previous nurse got into the vials except it clotted. t.t So she had to draw a new syringe of blood, got the vials filled, got the iv going and then the dr came in.

And then my mom overloaded her mouth again and told him I’ve been LIVING on freaking muffins. *rage* I’ve had 4 muffins in the past week. I’ve literally been living on chick peas, spinach, broccoli and brussels sprouts for more than a couple of weeks. So I got lectured about living on muffins and how I need to stay away from carbs etc. Thanks mom. The doctor literally looked like he should be in my bed instead of me. They checked my blood sugar which was over 500 but I can’t remember what it was. They gave me insulin directly into my iv. I hadn’t eaten since 9am and went in at 530 I think. I asked if I could have something to drink because my mouth was so dry I couldn’t swallow. So they gave me ice chips. By 8pm I felt like I was going to puke from not eating. So they gave me the anti-nausea medication through iv and then gave me sugar free cherry jello which tasted like cherry nyquil. The anti-nausea medication? It didn’t work. Ugh. Oh they also hooked me up to the heart monitor because my mom kept telling everyone I was having heart problems and palpitations, which I wasn’t. But oh well. Around 9pm the monitor started going crazy and was doing the emergency beep thing. It kept showing my blood pressure going from normal to like 200/100 then back down and my pulse was going crazy up and down. So they brought in the ekg machine and ended up giving me ekgs 5 or 6 different times. Eventually they decided my monitor was picking up interference from something because the ekg showed my pulse at 108 when the monitor showed it at like 130. However the ekg thingy was all over the place.

They literally had me lay still for almost 2 hours while they were doing ekg’s and checking my pulse and what not because of the stupid monitor. I seriously had sticky things all over my body. Also I had to pee really bad and they made me wait for like an hour before letting me go. t.t I think they checked my blood sugar on every one of my fingers. They actually somehow bruised my pinky from checking my blood sugar and the last nurse that took it actually put a little round bandaid on it, which Kai found incredibly funny after I got home and showed him all of my wounds and sticky things and told him what happened. I guess it was kind of funny. I’ve never had anyone put a bandaid on my finger after checking my blood before. Also people kept coming in and saying “Wow you look pale and sick”… Yeah, about that… I AM PALE AND SICK. Also every time a nurse or the doctor would come in they’d ask how my pain was and I would tell them it was no worse than usual. Then they would ask what was wrong, and I’d have to tell them I have lyme disease, then they’d be all “ohh. I’m sorry, that must suck” or “ohhh. What’s that?”. Have I mentioned I hate hospitals? :c Over all it was annoying and painful and I just wanted to come home. The doctor didn’t prescribe me insulin or anything. He literally told me to check in with my regular doctor, and said to use my moms insulin until I got in to see her… No “come back if blah doesn’t get better” or anything. Also my phone exploded when I got out of the hospital. It doesn’t get signal in there. So I had a bunch of text messages and Kai sent me a photo of Mochi sitting at the top of the stairs waiting for me to come home. When I got home she was still there and as soon as I walked in the door she ran down to me and wanted me to pick her up. Fumiko was asleep since it was 12 :3 0am when we got home. But yay, Mochi missed me. Also. They wouldn’t let me take my medication in the hospital. Which sucked because my hands started swelling and hurting because I hadn’t taken my 2nd or 3rd dose of it. :(

I hate hospitals. Have I mentioned that? Ugh. Next time you guys tell me to go to the hospital I’m not listening! :p My blood sugar was back up to 524 when I woke up. My skin is still crawling, I feel like I’ve been poisoned and I feel like I’m losing my mind. My entire body feels like it’s shaking. I’m antsy and nervous and I need to do something. I’m going to try to clean. I hurt but I can’t sit here I’m going crazy. I know it’s from the cymbalta and the doxycycline. I’m herxing and having withdrawal issues. I’m glad I didn’t stay on the cymbalta. I’ve only been on it for 2 months and the withdrawals are hell. :/ I can’t imagine how it would feel to go off of it after being on it for longer. Ugh.

I have to say thank you to everyone for their thoughts and prayers. I really appreciate it. Here’s to hoping I feel half way normal soon, and that Kai finds a good job super quick. Now I shall… Go do something before I go nuts. WTF

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Sso I’m not feeling all that well right now. I’ve been put on insulin and doxycycline. My doctor also insisted I stop the cymbalta cold turkey because of the reactions I was having. I took my mom to NARA on Friday for her appointment and our doctor ended up taking care of me because I looked like “death warmed over”. Quote from my dr. They did an EKG which was all over the place. When they checked my pulse it was over 130. Blogging on my phone from bed. Please forgive typos and such.

Blogging will probably be very slow for a bit. I’m on doxy for 3 weeks which is already making me herx. That coupled with the withdrawl symptoms from the cymbalta are kicking my ass. My skin is literally crawling. It feels like there are bugs under my skin everywhere. I feel like I’m dying basically. Ugh. I’ll try to feet some swatches done but no guarantees. I’m hoping once the cymbalta withdrawals go away I’ll feel a little better.

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I haven’t been feeling well so everything is on hold. Between health issues and personal matters, things have been pretty stressful. Not sure if I’ve had a stomach bug, food poisoning or if these are new symptoms with lyme but I’ve been sick for about a week. I’ve been having balance issues[1. OH HAI almost falling down the stairs not once but twice this week.], and the past few days I’ve developed issues with speaking. Oh joy. I know it’s common to have speech issues with lyme, so I’m assuming that’s what it’s from, this is the first time I’ve had this issue though. And then all the common junk: nose bleeds, numbness, tingling, stabbing/shooting pains, muscle pains, joint pains, etc. My body has been really stiff from the cold. I could have sworn I broke my knee some how when I tried to bend it after having my feet propped up on the chair next to me. On the bright side the sharp piece of tooth that was cutting my tongue broke off yesterday while I was chewing on some half melted ice. Hooray…

I don’t think the cymbalta is working for me. Pretty sure it’s making things worse. I feel more depressed, more panicked and more anxiety since I started back on it. Emotionally I’m a train wreck. I’ve had a couple of mini meltdowns and a panic attack since being back on it. I feel hopeless with my health. I’m hoping that when I start doing my earring thing it’ll keep me occupied enough not to sit and dwell on everything going on with my health and brain. Hopefully this speech issue is temporary and I won’t sound like I don’t have two brain cells to rub together for too long. It doesn’t help that I’ve been forgetting what I was doing halfway through doing it. Or like today I was talking to my mom and couldn’t remember why I was even telling her what I was telling her. I just couldn’t remember the thought was gone. I started crying because I couldn’t remember what I’d just told her, or what I was going to tell her. Blargh. Things have to get better. ikoni

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Honestly, nothing really, but more on that later. Right now I’m going to whine, bitch and moan.

Blargh I want to go lay down and sleep this off but Fumiko spilled water all over me and the bed this morning when she was watching tv in bed with me. t.t I can’t fall asleep on these chairs. I get almost there and then I get a stabby pain or the cats jump on me. *sigh* I talked to my mom. I told her I can’t take any herbs anymore. She told me I need to do it and get it over with, but I don’t think she realizes it will never be over with, and I can’t do this unless I have someone here to help me because I can’t function. 2 olive leaf capsules and 2 herbal antibiotic formulas and I can hardly function. What does she think is going to happen if I take more, or they actually start me on real antibiotic treatment? She says she gets it, but she doesn’t. I’m so tired and frustrated with this. I just can’t deal with random herxing when what I’m taking isn’t doing anything. I literally feel like I’ve been poisoned. I *feel* like I am dying and I’m all alone because Kai is at work and my mom is keeping fumiko downstairs so she doesn’t bother me because I have no nerves left to get on right now, the light is blinding and the sound of my own crying is torture. I hate lyme. Kharizma is coming over at 4pm today to I guess just be here for a little while so I don’t feel alone. There isn’t really anything she can do except just sit here with me, which I’m grateful for.

I think too much has happened this week between the holiday, being bit by a hobo spider, dealing with a sinus infection and just not feeling okay. But with lyme you never really feel okay. You never have days where you feel *good*. My good days are days when most people would call in sick. I can’t express to anyone how horrible I feel, emotionally and physically right now, a lot of the time. There’s no real hope at the end of the tunnel, it just is what it is, and it hurts. I hate writing about lyme, I hate writing about how I feel because honestly it’s depressing to write, it’s depressing to read, but I don’t think many people out there truly understand the every day, every minute struggle with lyme. Often times even people close to you, that love you, they don’t understand why some days, some weeks you just can’t physically or mentally function. When you have lyme you get good at hiding how you feel, or at least you get good at making it not look as bad as it is. My hair has been falling out, my eyebrows have been falling out, in fact I think I can count maybe 10 hairs on both brows combined, my eye lashes are falling out. On top of everything else going on, that is most upsetting right now. I can’t hide that very well. Last night brushing my hair a fairly big chunk came out. I feel like a cancer patient without cancer. Then I feel guilty for feeling bad, for feeling sorry for myself, for wanting to whine or complain, and finally for actually doing it. I know there are people out there far worse off than I, but jesus this is torture, it’s hell and it sucks.

I just want to live a halfway normal life. I want to be able to do things with my children, I want to be able to do things with my husband, and I want to be able to enjoy them and not have lyme always take away my joy. It’s always there, every single thing I do is about lyme and what it’s done to my body. I have a friend, someone who I consider to be a very good friend who also has lyme(I loves you Miss Luna). Sometimes it’s funny seeing another human being say “fuck my eyebrow fell out” or “On new antibiotics/pills/whatever hopefully I don’t herx too bad”. It’s quite pitiful. I guess I’ve complained enough.

Which brings me to this. I want to do something to raise awareness to lyme and I need to do something to earn money so I can actually do things in life that I would like to do before I die, which will be who knows when. It’s something you think really hard about when you read an obituary about a 33 year old dying from lyme complications. I’ll be 30 in January. Anyways. After the holidays are over I want to start making earrings. I want to be able to raise some sort of awareness about lyme to those who view my listings and I want to be able to make some money and have a second income coming in while doing it. Right now Kai is the only source of income that comes into this house and that needs to change if it can. I plan on getting together with Claire so she can show me how to properly make them, but I plan to use niobium and titanium and real gems(peridot, peruvian opal, garnet, etc). At some point I hope to be able to grow to necklaces/bracelets. I’d like to be able to have some simple necklaces with peridot and a silver ribbon, or hope on it, just something simple for those with lyme to wear. But I think this will be something I can do and bring in a little money for us. It’ll just be earrings for awhile, but hopefully in time I can add more. I’m excited about it. Excited at the prospect of making something, excited about possibly bringing in much needed money to our household, and excited about raising awareness for lyme. There’s no cure, but if people were just aware of what we go through, that we’re not lazy, it’s not a joke, it’s a very serious illness and it is very devastating and life destroying it might make it a little bit of a lighter burden to carry.

So I hope when that time comes that I’ll have the support of some of my readers, just to spread the word, that’s all I’ll ask for. Just spread the word for me.

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I’m behind! I swear. I don’t think I’ll ever get caught up. t.t Multiple health issues have been causing issues the last couple of days, one I won’t go into as it’s too personal, but starting yesterday light started to bother my eyes and cause headaches. It wasn’t too bad, but today it was a nightmare. I can’t even describe the pain in my eyes and head from even having the blinds closed. I tried to put a blanket up which refused to work. By the time I called my mom for help I was so hot and sick feeling that I thought I was going to pass out or throw up. Because I was so worked up, I ended up just freaking out and crying when my mom started asking me tons of questions about putting the sheets up she brought up. My brain just refused to work at all and down I went. My day has been spent in an almost pitch black front room. I’ve been going from omg I’m going to die of heat and sweating bad to freezing to death. It’s been… interesting. I think I’m having a lyme flare up. Recently I started losing a lot of hair, and my eyebrow hairs have been falling out just from washing my face or putting lotion/makeup on. :( I also feel like I’ve been getting or have another sinus infection. I tried calling NARA today but my doctor is out of town until next week, so it looks like I have to just wait for my scheduled appointment to talk to her.

When it rains it pours in my life. My mom is doing well though. She’s been recovering from having a stent put in her chest. She’s really tired but doing better. I think she may be doing better than I am right now. I talked to her the other day about me studying Wicca. To my surprise she was okay with it. I expected her to hate me, disown me, never speak to me again or be disappointed in me. She was none of those things. Today she even came up and we had some fun asking my pendulum questions, since it’s decided it’s going to work with me again. It was nice. I feel like ass though. I’ve been nauseated all day and now I have an awful craving for root beer. Mochi and Sushi are doing really well. I’ve decided thanks to Dawn who thinks I need a black cat with green eyes, that I need a black cat with green eyes. So I am now on the look out for said kitty. Must be female and young so Sushi will like it. When I told Kai his response was pretty much “so we’re getting another cat?”. hehe It’s been good for me to have them, my mom too. Mochi has been really good for Sushi too. She’s much sweeter and isn’t being well a bitch to us now. So yay. My brain is jumbled and I feel like I’ve been beat with a poop stick. I hope this light thing doesn’t last long. Tomorrow is Kai’s day off which I am grateful for. Ben had to take Kai to work this morning. I literally had a blanket over my face because the small amount of light coming in from the blinds being closed was torture. I also hope my hair stops falling out soon. It’s already thin and fine enough, I don’t need any help making it more thin. t.t

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So my life is rather boring. Well it is if you don’t count the ups and downs and sideways and zigzags with my health. TMI: I’ve been on my period since September 26th with no sign of it stopping. The antibiotics I had for the sinus infection and what not screwed with my depo shot. *sigh* I’m hoping it won’t last until I get my next shot. This is torture. My medications have been shuffled around. I am now seeing a therapist and psychiatrist. My doctor sent me in because she thinks I have PTSD. Which apparently the psychiatrist and therapist think also. I also may or may not have bi-polar 2. I didn’t know there was more than 1. They are trying to work on my social phobia, but my therapist thinks I’m doing a great job all on my own. She also thinks I know exactly who I am and I just need to BE me.

I’ve met a couple of wonderful people that I met online. Claire from Claire’s Beauty and Chantel from Geek Chic Cosmetics. They are both lovely, wonderful people. Next I’m hoping to get my glittery paws on Distorria from Detrivore Cosmetics. Muahahaha. But really. I’ve been trying to work on my social anxiety and fears. It’s hard. I also thought I was over being raped at 13. But I’m apparently not. That has also been a subject in therapy. Also I need to learn to not put on makeup for therapy, because I cry, even though I tell myself I won’t, I do. It’s just painful and stressful to go over and re-live situations I just want to forget about. I’ve been going to see Chantel after therapy the last couple of times. Which has been awesome. I really enjoy spending time with her.

The psychiatrist took me off the two anxiety medications my doctor put me on about a month ago and put me on Cymbalta. She thinks it will work well with the Gabapentin. She also changed how I take my Gabapentin in hopes that my body won’t build up a resistance to it. I hope she’s right and it doesn’t because I go crazy with panic and fear when I go off of it to sort of reset how my body treats it. Blech. Life is hard yo. I need an instruction manual for this body.

I decided that I need to be me, I need to do what makes me happy. I recently purchased a book on Wicca. It’s something I’ve always been interested in, but stayed away from it because I was afraid that my mom would react badly, and that’s something I honestly can’t deal with now. I’ve basically put my beliefs and life on hold to respect her beliefs and I can’t do that anymore. I’m crushed that my crystal boxes are gone from our garage. I have to start over now. That was over 10 years worth of crystals and memories and special things. I don’t know if they were trashed, or if they were taken when my moms friends from her church helped her clear out the garage. Either way, they are gone and I am sad. So now I start over.

A lot has happened and changed this past month. I feel like a new person almost. I still hurt and get sick, but I feel changed some how. I think just putting my foot down and telling myself things were going to be different and I was going to do what made me happy, it changed something, and I’m glad. Gosh I can’t even write this without getting teary eyed. Stupid emotions. It sucks not to be comfortable in your own skin. I want that back. I want to be able to go to the grocery store and not fear that someone may talk to me. I want to be able to go to the mall or wherever and not wish I were invisible. I just want to be happy. It’s going to be a long journey, but it will be worth it.

Oh there is this too…

Her name is Mochi. Dawn took me over to get her on Sunday. She’s a sweetheart. As soon as I picked her up I knew she belonged with us. Sushi’s whole demeanor has completely changed with Mochi being here. She looks happier and sweeter. Sushi is dying to play with Mochi, but Mochi keeps growling at her, which is incredibly cute and funny at the same time. I honestly expected Sushi to try and eat her. But she hasn’t so much as raised a paw to her. The first day Sushi hissed and growled and Mochi stayed away. The second day Sushi was kind of on the fence and yesterday she started to try to play with Mochi. So it’s gonna work out and I’m so glad we got Sushi a friend. She seems so much happier now. Hopefully I’ll have photos of them together soon. :CAT:

Also if you have never tried anything from Cocoa Pink you need to. I ordered some hair frizz serum stuff and it’s amazing and the scent is freaking incredible. She also sent very generous samples with both of my orders. My second order was for shampoo and conditioner which are pretty awesome. I think I may need to try her other conditioners. I love, love, love one of her Hallow’s Eve scents. Fear of Cemeteries is amazing and you must try it. I am going to be ordering some body butter from her in Fear of Cemeteries because it is so amazingly awesome. &LT;3 She sent me a sample of her voluptuous body butter in my first order, it was scented with one of her pumpkin scents. Amazing. Okay. I’m done raving about it now, I swear. Though expect some reviews soon. :d

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