This week is crazy for me. I have appointments every day but Monday. I am so tired. Yesterday I saw a sleep specialist and have to go back on the 23rd to spend the night so they can test me. I don’t know how that’s going to go because I have to sleep, but I haven’t been sleeping so that’s why I saw them. Poop. Today I saw an allergy specialist and found out I have Oral Allergy Syndrome. Which explains why I get gut wrenching pain when I eat some foods. So I have a list of things I shouldn’t eat:
- Alder pollen: almonds, apples, celery, cherries, hazel nuts, peaches, pears, parsley, strawberry, raspberry
- Birch pollen: almonds, apples, apricots, avocados, bananas, carrots, celery, cherries, chicory, coriander, fennel, fig, hazel nuts, kiwifruit, nectarines, parsley, parsnips, peaches, pears, peppers,plums, potatoes, prunes, soy, strawberries, wheat; Potential: walnuts
- Grass pollen: fig, melons, tomatoes, oranges, celery, peach
- Mugwort pollen : carrots, celery, coriander, fennel, parsley, peppers, sunflower
- Ragweed pollen : banana, cantaloupe, cucumber, green pepper, paprika, sunflower seeds/oil, honeydew, watermelon, zucchini, echinacea, artichoke, dandelions, honey (if bees pollinate from wild flowers),hibiscus or chamomile tea
- Possible cross-reactions (to any of the above): berries (strawberries, blueberries, raspberries, etc), citrus (oranges, lemons, etc), grapes, mango, figs, peanut, pineapple, pomegranates, watermelon
Yeah that’s lovely. I also talked to him about Fumiko because she too is allergic to apples and pears and other various foods give her stomach aches. He told me it’s very likely she has the same thing going on. Ugh. Why life? Why? So I am to pull all these things from our diet and slowly add stuff back to see which things we react to. If we react to it then we don’t eat it. He said I may have issues with the whole damn list or just certain things. Lucky me, I can already cross a few things off that I know I can’t eat. This is going to be fun. Tomorrow I have a meeting at NARA to deal with my disability stuff. Woo. My body is protesting everything right now. My bones ache, my muscles burn and have shooting pains, my joints are stiff and hurt and the joints around my fingers and wrist are swollen. My brain is out to lunch. I had little and big dots all over my arms earlier from the allergy test. Dude some of those spots itched and burned like a mofo. It was all I could do not to scratch the crap out of them. But hey at least I have some answers. Now if only I could get answers on the rest of my body. *sigh*
Next week I have a doctors appointment, then a home visit that afternoon, then therapy the next day, then therapy for Sascha the day after that. So much for my poor body. At least our brussels sprouts and sweet potatoes and spinach and kale are okay. We just have to do more now. I’m so grateful my kids like vegetables and will eat them. And chia seeds they like those. Oh and hummus. Om nom nom. Tonight for dinner we shall have buffalo chicken and broccoli. I found a mild buffalo sauce and the kids are all over it. Fumiko wanted me to buy every bottle on the shelf. Thankfully there was only two. I must go now. My arms are beyond screaming at me right now and are threatening to protest me.
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
Sore throat, clearing throat a lot, phlegm (flem), hoarseness, runny nose
- Double or
Increased floating spots
Pain in eyes, or swelling around eyes
Oversensitivity to light
Flashing lights, peripheral waves or phantom images in corner of eyes
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
- Irritable bladder (trouble starting, stopping) or interstitial cystitis
>Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
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
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
- Mood swings, irritability, bi-polar disorder
Disorientation (getting or feeling lost)
Feeling as if you are losing your mind
Over-emotional reactions, crying easily
- Too much sleep, or
Difficulty falling or staying asleep
- Narcolepsy, sleep apnea
Panic attacks, anxiety
- 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
Unexplained weight gain or loss
Swollen glands or lymph nodes
Unexplained fevers (high or low grade)
Continual infections (sinus, kidney, eye, etc.)
Symptoms seem to change, come and go
>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. 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.
Today… *checks time* Yesterday… Fumiko and Sascha and I went to the park down the road and explored the trails! I took lots of pictures of plants. I want to learn what they all are. Help a girl out. If you know what some of these plants are please tell me! I have failed at google. We had fun. Though we ended up at a marsh like thing and I got one of my shoes soaked in mud. Oops. We found a poor little wooly bear caterpillar on one of the trails. We almost stepped on the poor little guy. I moved him off the trail so he was safe and wouldn’t get smooshed. I think next weekend we will go out again and explore in the other direction. We had fun.
I don’t know what plant this is
I don’t know what plant this is
I’m not sure what this is
Don’t know what this is either
I think this is a sweet pea?
I’m not sure what this is? A buttercup?
I think this is a thistle?
One way had all of these plants
The other way was yellow flowers everywhere
The other way was yellow flowers everywhere
Yellow flowers everywhere.
More yellow flowers and other plants
Berry blossoms I think
Is this a wild rose?
Is this a wild rose?
I think this is some kind of lily?
What issss it?
I don’t know what this is either
They were ready to go home!
“Pleaseeee can we go now?”
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