How Medical Marijuana Is Helping Me

16 Jul

product_bars-milk-large

 

How Medical Marijuana Is Helping Me

*I’m really not feeling well at all and having a very rough few months again. I just wanted to briefly go over something that proves to me that my mmj is working.

I have posted before that I use medical marijuana (mmj) to help with my many illnesses. I take the cannabis oil for my lyme and co’s and for its medicinal purposes but I also take edible mmj for my Gastroparesis (GP) and eating issues. I never have an appetite and rarely crave anything except chocolate or salt. I lost a lot of weight even while on all these meds that are supposed to make me gain weight. I usually only eat dinner when I wake up but I don’t eat very much food maybe what a kid could eat. At night I sometimes snack on things like chips or cereal if I am feeling hungry still. I lost 10 lbs in pretty much one day. I weigh what I used to weigh in probably the 6th grade.

So after losing my appetite and not wanting to eat very much I needed help. I also have digestion issues and cannot eat many foods but I try to eat them anyway lol. After dinner every night I would vomit up dinner. Then I trained myself where I can dry-heave now. I got all my paperwork and card and started to try mmj. Smoking it doesn’t do the trick for me so I use edibles. The best edibles that work for me are called KIVA Chocolate Bars which to me tastes just like eating a Hershey milk chocolate bar. They come in many flavors and different doses as far as higher THC/CBD. The CBD is what you want the most not the THC but the THC gives me my appetite back so I need both.

I have proven over and over that every time I forget to eat my chocolate bar piece I always puke after dinner. So I know for a fact it is helping my stomach and digestion. It is also helping me gain a little weight back and I crave things sometimes. Tonight I ate a little bit of dinner and had no appetite so then I ran out to the backyard and almost puked. I thought to myself “did you take your mmj?”. I went to my room and there was the unopened bar sitting there. So I forgot to take it. The bards are pretty pricey but it is worth it to feel a little relief from eating.

 

 

Stay strong warriors….. you are never alone we are all in this together.

 

 

 

IVIG Infusion – Another Bad Reaction

10 Jul

IVIG 2

 

IVIG Infusion – Another Bad Reaction

I had my monthly full dose IVIG (gammagard) infusion on Monday. My nurse came over and we did all the usual (claratin, benadryl, tylenol, pain killers..etc) and the infusion lasted 4 hours again. My vein started to collapse but we finally got some saline to go through and the infusion went fine without any beeps from the pump for once (usually I clot and the pump beeps). I felt really exhausted and kind of having out of body type experiences about the time the infusion was done but that might of been the combo of lack of sleep, a ton of meds and the human plasma from thousands of donors entering my blood.

Later that night I felt a slight fever coming on but felt pretty normal as far as my usual all over bone, muscle, nerve pain and all my symptoms. I woke up sometime in the early morning with a really extra dry mouth and extra dehydrated. I say ‘extra’ because I am chronically dehydrated daily from some genetic issues or something and not even 20 bottles of water, trace minerals, electrolytes…anything will stop it or quench my thirst. So I remember thinking I needed water but I could not move or turn over to grab my water. It was then I noticed the bad head pain and started to realize why I was dreaming I had been shot in the head.

I woke up and I had soaked the bed in sweat yet I was burning up with a fever and had the chills. I had the brain inflammation so I couldn’t talk, see or move. All of my body hurt like my RSD pain I have in my arms where even the slightest touch from my sheets would hurt so bad, especially my ankles. I could even pick up my phone to text my mom for help. Later in the morning before work my mom checked on me and finally got me some water, migraine meds, benadryl and pain killers. Somehow I managed to sleep on and off for a few hours. That evening I took all of my meds along with my mmj, morphine and others and finally started to feel a little better. I am feeling better now but my head still hurts like crazy if I bend over. It just makes me scared to do another infusion. It was a horrible night and not one I look forward to next month. At least I didn’t need to go to the ER this time, I have all the same meds here and they ended up charging me for all these ridiculous charges and Medicare denied some.

For the 4th of July I did my usual and just laid in my chair watching TV. I didn’t see any fireworks. But I was able to talk to my sister @mommyjewels (on Instagram) so that made my night.

 

I hope you all had a better 4th and you are all progressing from your illnesses. Don’t give up, hold on to hope and just keep on being strong. Better days are coming.

 

 

 

Update: Sicker, More Pain & IVIG

1 Jul

pain site 2

 

Update: Sicker, More Pain & IVIG

Just a quick update. I know I have been quiet for a while. I have been feeling sicker the last few weeks. We upped my dose of Morphine to 75mg 2 to 3 times a day but the pain is feeling worse lately not sure why. I am still taking my usual Norco, many anti-inflammatories, and other herbal pain killers. I also added senaga root which is supposed to help with pain. It is the severe, sharp, nagging, non-stop pain from head to toe in my muscles, nerves, bones, joints…etc in every inch of my body. I know it’s not just the lyme and co’s it might be my other illnesses or chronic pain/arthritis acting up. It makes me so stiff I can barley walk. My right hip also still has that weird severe pain where it almost feels like I fractured my hip/leg bone from my hip joint to the knee cap. I have had broken/fractured bones before so it feels similar.

A lot of bad news and negative things happening lately so I am trying my best to stay positive. Even the blood lab called and said they left the fridge open and my blood vial was ruined so I need to go back. Last blood draw I passed out and had collapsed veins so it’s hard to find a good day where I am kind of hydrated to take the blood test. Had to go get my RX and my MMJ in another city so I actually left the house for once and had lunch and ice cream that day. I was feeling very weird at the restaurant though and wanted to puke and pass out.  But I had fun and enjoyed the little things. I know someone always has it worse so I don’t like to complain. I just feel like I try to do everything right and life takes everything I like or need away from me.

I have been very dehydrated still yet sweating at night soaking my bed. I am taking concentrated electrolytes, trace minerals (rehydrate), drink lots of water, tea and kombucha. Just can’t seem to not be thirsty and I have a drink in my hand constantly even when sleeping I will wake up every 15 min for a drink. Even with all the pain and passing out…etc. I always try to work out each day even if it’s for a minute. I sit down on my bike and use it for a few minutes until I am ready to pass out or puke. It tales a long time to get oxygen and catch my breathe but at least it will keep my leg muscles from getting to weak. I also lift light 15lbs bar bells. No matter how hard it may be try to get some physical activity in your day.

Getting my IVIG either today or Wednesday depending if the meds show up on my porch today and my nurse can make it. It should go fine, I haven’t had too much trouble with them lately.

 

 

Sending all my best to all my fellow warriors and may better days come. Stay strong and keep swimming…………

 

 

 

 

___________________________________________________________________________________________________________________________________

 

Sorry Lack Of Posts

18 Jun

HOPE PIC

 

 

Be Back Soon…

Hey fellow Lyme Warriors how are you? Sorry I have been missing for a while. I am just dealing with a lot of personal issues with my life, love, my health and it is just overwhelming. The one thing I wanted to happen so bad may never happen so my heart is hurting. I have been sicker and not much to write about. Just a lot of bad luck and struggles for every little thing I do. I am trying to stay positive since I am an optimist but when life just keeps kicking you when you are down it’s hard to smile. All of my closest, best friends are struggling also and we are all depressed so I wish I could help them all. I will bounce back, I am resilient but it will take some time.

I found a place to do my Ketamine infusions but it is 22 total infusions for $11,000 and you have to do all or nothing. I only wanted 2-4 infusions since I hear they stop working after a few infusions. I increased my Morphine to 75mg twice a day instead of 60mg three times a day since the dose at night keeps me awake more than my usual insomnia. I am still doing the Buhner protocol but I dropped the Red Root and I am adding some kind of Salvia dropper. Nothing is making me feel any difference. Still working on getting a used oxygen concentrator since Medicare refuses to help.

My IVIG infusions are going smoother and less headaches and no bad reaction like the first one. But they are $500 each infusion. I need to get blood work but my last blood draw I passed out and scared the poor girl taking my blood. I never pass out so that was a first. I also am too dehydrated lately and my veins collapse easy. The 100-108 degree heat wasn’t too fun a couple of weeks ago. Not a fan of summer since it makes me feel worse with my lyme and vitamin d issues.

I hope you all are healing and finding better days. Never give up and always keep hope alive. I wish you all well. I may not be able to reply to any comments so if I do not I am not ignoring anyone. Thank you and stay strong.

 

 

 

___________________________________________________________________________________________________________________________________

 

 

 

Visit To LLMD (GMA) & IVIG Infusion

6 Jun

IVIG day 2

 

Visit To LLMD (GMA) & IVIG Infusion

I had my IVIG (human plasma) infusion om Tuesday evening.  The infusion time was only about 3 hours. The issue was that I was severely dehydrated so my veins were collapsing.  With each poke I could feel the tube of the IV burning inside my veins and my vein was gripping on the tube. It took 7 pokes/needles and about 8 glasses of water, electrolyte water, juice to hydrate just enough for the vein to work. I started to get a headache about an hour in but I took some extra norco and Ibuprofen 800 which seemed to help. Before the IV I took 30mg of Norco, 60 mg of Morphine, 50mg Benadryl and Claratin. This infusion went pretty good and no bad reaction. That night I did have more sweating that usual and I was exhausted so I sleep decent. I’m still a little worn down but that may be because doing the IV on Tues and driving all the way to Santa Rosa on Thursday.

 

LLMD Visit

The LLMD visit went well. It was just a face to face visit so I can continue to get my MS Contin. Every 3 moths you have to show your face to get certain pain killers. We deleted Red Root from my Buhner protocol and added Sativa. She thinks my Babesia is still really bad. I have low testosterone so I will be starting a cream. We also upped my dose of morphine to 75mg from 60mg . As for Lyme still not much we can do. I will be trying to get Ketamine infusions soon if things go well. UCD was being rude and doesn’t like outsiders so I cannot go there. I am still exhausted so I might be leaving out details but that was about all I can remember.

 

Hope you all have been having better days. I am rally stressed lately in my personal life as well as health life. so I have been quiet. I hope things work out for the best.

 

 

 

 

 

My Chronic Lyme Disease Symptoms (Updated)

6 May

lyme_neuro_table

 

My Chronic Lyme Disease Symptoms (Updated)

I get asked a lot about how long I have had lyme and what are my symptoms. I don’t like answering this question because there are too many symptoms to list and I forget what most of them are because I have been dealing with them so long I think they are “normal”. Below is a list I posted a couple years ago of a good majority of my symptoms from lyme and co’s but I know there are many symptoms missing.

There are times when other lymies who have one or two symptoms will ask me “why can’t you work, I can”  as if they think lyme is curable and only has a few symptoms but they have no idea how much worse lyme can get if untreated your whole life or once it is stage 3. This disease is a living hell and it is different for every person so it is hard to compare or give advice to others when we all have different battles with the same disease.

 

My daily chronic lyme disease symptoms:

**My pain from the bottom of my feet to the top of my head is daily (24/7) and severe (pain scale 10++) but most of my pain is caused from other illnesses or medical issues plus the lyme and co’s. Here’s an older list from last year. Some may repeat sorry. I know I left out many symptoms since there are 100′s but of course I am struggling to remember them all. Some of these may not even be symptoms but illnesses causing them.

 

Head, Face, Neck

  • Pressure in head (sometimes meningitis)
  • Headaches, mild to severe almost daily
  • Migraines up to 7 times per month (i’m lucky)
  • Twitching of facial muscles
  • Facial flushing
  • Stiff or painful neck (most of my pain starts here and radiates down)
  • Cracking in neck, herniated discs & cysts in spine caused by lyme
  • Sore throat, strep throat, hoarseness, runny nose, dry nose
  • Mouth sores, dry mouth, swollen tongue (rare)

Eyes/Vision

  • Double or blurry vision
  • Increased floating spots or floaters (bugs)
  • Pain in eyes, or swelling around eyes
  • Oversensitivity to light (daily)
  • Flashing lights/Peripheral waves/phantom images in corner of eyes
  • Sensitive to movement such as a movie will get me dizzy/nausea
  • Eyes burn or hurt where I can’t see phone screen or tv
  • I still have 20/18 vision somehow

Ears/Hearing

  • Decreased hearing in one or both ears, plugged ears
  • Buzzing in ears
  • Pain in ears, oversensitivity to sound
  • Loud Ringing in both ears
  • Sound of blood rushing in head

Digestive and Excretory Systems

  • Diarrhea (IBS)
  • Constipation (sometimes severe TMI)
  • Vomiting after I eat (used to be daily until I started mmj)
  • Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  • Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  • Gastroparesis (illness not symptom but may be cause of some of these)
  • Stomach cramps/pain
  • Leaky Gut
  • Had C-Diff and a severe case of Candida

Musculoskeletal System

  • Severe bone pain, joint pain or swelling (bone pain is one of the worst for me)
  • Stiffness of all joints, back, neck…
  • Severe muscle pain or cramps
  • Twitching and spasms all over
  • Unexplained bruising
  • Charlie horse in muscles

Respiratory and Circulatory Systems

  • Shortness of breath, air hunger, cough, wheezing
  • Chest pain or rib soreness
  • Night sweats or unexplained chills
  • Heart palpitations or extra beats
  • Tachycardia, bradycardia (rarely) POTS
  • Stinging in lungs after sneeze or cough
  • Low oxygen (have O2 machine)

Neurologic System

  • Tremors (since I was a kid) or sometimes severe shaking
  • Burning or stabbing sensations in the body
  • Nerve pain (mostly severe each day)
  • Weakness, peripheral neuropathy or partial paralysis
  • Numbness in body, tingling, pinpricks
  • Poor balance, dizziness tippy, difficulty walking
  • Increased motion sickness
  • Lightheaded, wooziness

Psychological well-being

  • Irritability
  • Unusual depression
  • Disorientation (feeling lost)
  • Feeling as if you are losing your mind
  • Over-emotional reactions, crying easily
  • Never enough sleep or insomnia
  • Difficulty falling or staying asleep
  • Panic attacks, anxiety

Mental Capability

  • Memory loss (very bad short and long term loss)
  • Confusion, difficulty thinking
  • Difficulty with concentration or reading
  • Loss of words or forgetting words
  • Dyslexia
  • Going to the wrong place
  • Speech difficulty (slurred or slow)
  • Stammering speech, stuttering
  • Forgetting how to perform simple tasks

Reproduction and Sexuality

  • Loss of sex drive

General Well-being

  • Malaise
  • Extremely sensitive to cold and heat in body and mouth (eating food)
  • Neck glands cause shocking pains
  • Phantom smells
  • Extreme fatigue
  • Unexplained weight gain/loss
  • Swollen neck glands/lymph nodes
  • Unexplained fevers (high or low grade)
  • Early on, experienced a “flu-like” illness, after which you have not since felt well.
  • Low temperature
  • Unable to walk
  • Arthritis flares and my bones get stiff or hard to move/flex
  • Out of body experiences
  • Exhaustion daily (never a day with energy in last  5 years)
  • Hot flashes
  • Chills
  • Sensitive to the sun (makes me feel sicker)
  • Sugar makes me feel worse
  • Hands hurt so bad I can no longer write with a pen or draw
  • Feeling like each day I am dying
  • Literally feel like I am 90 years old
  • Primary Immunodeficiency (no immune system)
  • Haven’t driven a car in 4 years due to symptoms
  • And many more I can’t remember……

 

If you name a lyme disease symptom I most likely have it. I just don’t have the genital pain like I see listed on lyme disease symptoms checker at my LLMD. I usually check mark every box on the symptoms sheet at the doctors (those who see an LLMD know the long symptoms list we have to fill out each time. I rarely leave the house usually only to get a prescription with my mom or go to a doctor appt. I have been bed ridden but now I am able to walk to the living room and lay in my chair or walk around the house. I lost the ability to walk and was in a wheelchair but I will not let Lyme beat me! I am planning a vacation so I hope to get out for the first time in years.

As for me I have had lyme basically my whole life and always thought everyone had the same pains and weird things going on in the body as I did. I didn’t start to get worse until maybe my teens and when I was 19-21 that is when everything started to snowball and get worse. Started with bad knees, arthritis, spinal stenosis, nearly died from elderly pneumonia and so on. I worked and went to college until I finally collapsed and could no longer keep up with the world 5 years ago when I became officially disabled. So if you have only a few symptoms and think it won’t get any worse it most certainly can. So treat your lyme as much as you can and as early as possible for a better chance of remission.

 

This all sounds depressing but we will all get through this and we will not let our illnesses define who we are. Never give up and never take your life or health for granted because you never know what can happen. Stay strong, love life and fight on!

 

 

___________________________________________________________________________

 

 

May Is Lyme Awareness Month & Quick Update

2 May

Wear greenMay Is Lyme Awareness Month & Quick Update

A little late with my campaign picture above I made but today was wear lime for lyme. As you may or may not know (no pun intended) May is lyme disease awareness month and many other illnesses like gatroparesis and lupus (which I have). Make sure you spread awareness and show your support. A couple years ago I had a story on the front page of my local paper warning people about tick season. It takes a lot of energy or spoons to help spread awareness but I think if we keep at it lyme will be taken more serious.

Update:

So on Easter we had my sister, a friend and kids over. I rarely leave the house, go in public or am around people due to my immune. So a day after Easter I started to feel sicker. One of them gave me a bug. I have a sore throat, lost my voice, fluid in lungs, darker colored mucus. I have been taking claratin and doxycycline for now and I am feeling a little better bug wise. As far as lyme and my illnesses still lots of pain and haven’t been doing so well. I try to keep up when I can.

 

I hope all of my readers are finding relief and better days. Keep up the fight!

 

 

 

 

___________________________________________________________________________

 

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 1,282 other followers