Being Real

I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless….
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things…. living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor). 
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I’m back in that cycle where I have just enough strength to work my part time job….and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon. 

Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You’ve never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing “normal” things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound. 
The mind can go down Dark rabbit holes so easily: This isn’t living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That’s a major one Satan like to come at me with). 
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.

That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.

After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things. 
Why did I share all that? I don’t think it’s because I want pity. I want to be normal, I just want to live, I don’t want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don’t do so to the people in my life as well, and I’m just forgotten. 

I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a “hi”, nothing fancy, just knowing I’m not forgotten.
Why The Chronically Ill Post TMI

Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella: What is Bartonella & its Symptoms?

 Babesia: What is Babesia & its Symptoms?

which are the two major Lyme coinfections. 

My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that’s been difficult ( Lyme & POTS )
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process. 

A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can’t always identify every weed, and the “poison” ruins the soil so you have to keep replenishing as you’re killing, and just when you think you got it all…. you find there’s stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: What is a Herx?

Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary. 

Please also pray for God’s financial provision as for this season expenses have again skyrocketed into about 5,000 a month.

I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity). 

Steidl Family Lyme Fund
Jennifer’s Lyme Fund
Thank you again for taking the time to read all this. 

When Life Punishes You For Living

Here I am again, posting on another “bad” day.

You see I’ve had some decent ones, even though I never feel “great” I’ve had consecutive weeks/months of having a better balance here and there. Inflammation has been acutely worse for weeks, but I’ve been able to maneuver around it to a point. Yes I’ve had days of crashing more and napping more, yes I’ve had to say no to going to church and Bible study because “extras” are too much. (Hey wait a minute! Maybe I’ve been struggling more than I’ve acknowledged). But anyway, then there is today; today when I feel my body is getting revenge for all my betrayal. Today when I feel stripped to the bone. I woke up at 11am (yeah I know), and still felt I could barely climb out of bed. Breakfast happened at 12:30 sitting in a detox bath, and I feel completely horrible: achy, stiff, toxic, beyond fatigued, heavy, swollen, fuzzy-brained. The autoimmune overactivity is high and I can both see and feel the fluid and pain.

So what did I do to myself to deserve this? That is always the question I first ask because self-blame is my automatic go-to. Well what I “did” was try being semi-normal for a few weeks: having to work a couple weeks full time, eating some “bad” stuff here and there (and by bad I mean bad for me personally; like dark chocolate, some organic mayo, some cayenne, a little vegan ice cream,etc.). Am I right in beating myself up? I am never sure how bad to guilt trip myself. It’s so hard when all you want to do is live and your body is just really not into that.

I am still counting the days until my new patient consult on the 14th at Sophia to address autoimmune issues and mast cell activation disorder (assuming that’s what’s going on). I’ve had a couple doctors confirm that Borrelia, Bartonella, Babesia, Epstein Barr, Erlychia…and all the rest including viral coinfections, are”fixed”, so I’m hoping the last hurdle is the autoimmune, but it’s a big hurdle. 

I have not paid any attention to fundraising for a long time; mostly being it makes me feel shamed, embarrassed, unworthy, guilty, and all the feelings that orbit the above. But more than that is my constant guilt of being a drain on my family. Thankfully family medical expenses have come down a bit from around 6,000 a month to around 2,000, which is good but still difficult. As my sister and I are about to embark pursuing this new clinic though they may jump up again exponentially, so I will put a link here so anyone that is able and led to help. Youcaring

So here I sit in bed on a Sunday afternoon wishing I could have gone to church, wishing I could take my dog out, wishing I could be out and about. Tomorrow may be better, I’ve been through this more times than I can count and I know that often things won’t be so bad the next day. On a day like this things always feel so bleak, but I know that tomorrow always brings new hope and a different viewpoint.

I’m glad I write on bad days, when I can’t move and I hurt and can’t think well; Writing gives me a sense of purpose and makes me feel I’m still here, still fighting.

See you tomorrow 🌅

So How Was Your Weekend?…the difficult questions for an invisible illness sufferer

So if you are blessed enough (like I am) to be at the stage of illness/treatment where you can hold down a job, I am sure you have heard this question on a regular basis…”How was your weekend?”
It’s a tough one to answer especially to coworkers who see you “functioning” somewhat normally, but don’t quite grasp that in order to do this at work it means you don’t have weekends.
Evenings and weekends are about recouping, resting, vegging. At least most of the time. That makes it very hard to explain to people that you really didn’t do anything, and this weekend was just like the weekend before, and the weekend before that, not much happened. It’s hard because, well, “you look fine” right? 😉

So I am just, just, poking my head back out of a pretty significant slump that has lasted for the last two months. Something I have learned from when I last had a period of time when I felt better, is not to use up all your energy. You see a couple months before my slump (I’m owning it!), I had a period of about two months where I felt better than I had in years, I did some stuff, I saw some people, I helped some people, and it was all good. Now I don’t think overtaxing myself was what caused my crash, but I don’t think it helped any either. So we live we learn right?

So this time as I am feeling a little more human again I am thinking of letting my body use most of my extra energy (I call it extra, normal people call it normal). Now I do want to see some friends again, and be able to do a few things, but I am going to be very careful.
I have been slowly coming out of my bad fatigue over the last two weeks, but last week was REALLY tough on my body with some nasty bladder/kidney symptoms and pain. I had gone to the doctor and I’m clear of any UTI or stones, the thought is that I was having a major detox. Thankfully those symptoms are ebbing away, and I am looking forward to (hopefully, fingers crossed, knock on wood, salt over shoulder…) some better days ahead.
So tomorrow I will face the inevitable question “How was your weekend?”
Answer: I actually got out to see a movie with a friend! Woot woot!

How do you feel when others ask you about your week/weekend? Does it depress you? Do the flood gates open? Or is it just no big deal?

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I don’t want attention

What is your default when you don’t feel well? Some people want attention, some people want to be comforted, some people want to pretend that they are better than they really are. Me? I usually just want to be left alone.
No offense to the dear people I love so much in my life, but it is really hard when you don’t feel well, you look gross and have limited energy to be around others.
For me I think there are two things that being ill long-term has fed in the way of insecurities; although I am a lot better than I used to be, but I still struggle with a negative body image. So when I put on a lot of weight and/or a lot of water weight (gee thanks GI issues and chronic edema) I feel really gross about myself and I don’t want anyone to see me. Also I am an introvert. INFJ/INTJ so it is easy for me to regress into my “cocoon.”

Okay for everyone out there that thinks being introverted means I don’t like people or am antisocial that’s not true! It means that I greatly value time with a few people vs a hoard, or one on one. There is nothing so wonderful as having a great conversation with one friend or a couple of good friends.
but when you don’t feel good, and or don’t look good, putting out social energy is tough.
So in these last several weeks with this little health setback I have been thinking that I have been isolating again. So I’m just putting those thoughts out there for today. Is this true for any other sickies out there?

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Complete Lyme Symptom List

I know I have posted this before, but it is just the best most complete Lyme symptom list.

One thing I didn’t do before was highlight the symptoms I have/do experience, so this time I did. Items in bold I have experienced in the past over the years, or presently experience.

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE

Abnormal sensitivity to hot or cold
Allergies (nasal, other; new, increased or worsening)
Canker sores (frequent)
Chills and/or shakes when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever (99.5-101.5 F /
37.5-38.6 C), chills
Hair loss (alopecia)
Herpes simplex or shingles rash
Increased susceptibility to infections
Low-grade fevers
Low blood pressure (below 110/70)
Low body temperature (below 97.5)

Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Orthostatic Intolerance (neurally mediated hypotension)
Reactive hypoglycemia and insulin resistance
Thirst, increased
Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature and body temperature; low body temperature (below 97.6 F / 36.4 C)

Thyroid inflammation (acute thyroiditis; hypothyroidism; Hashimoto’s thyroiditis)

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY

Cardiac abnormalities (mitral valve prolapse; myocarditis; tachycardia; palpitations; dysrhythmia)
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart attack
Heart palpitations
Heart pounds so hard it shakes body, bed
Pulse skips
Serious rhythm disturbances of heart
Sighing, frequent, not related to mental/emotional state
Stroke
Vasculitis

CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC

Abnormal CAT, MRI and/or SPECT scans
Alcohol intolerance
Aseptic meningitis
Brainfog”; inability to think clearly
Difficulty moving tongue to speak
Diminished or absent reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing fluctuations (sounds fade then return)
Hearing changes, often from day to day (need to turn up, then down, volume of radio, TV)

Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance

Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity
Radiculitis
Seizures; seizure-like episodes
Sensory alterations (hyper- or hyposensitivity) – smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Tinnitus (ringing/noises in one or both ears)
Touch or weight of clothing on or against body causes discomfort or pain
Tremors, trembling

COGNITIVE FUNCTION

Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words

Difficulty moving your mouth to speak
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when
background noise is present
Difficulty making and/or retrieving memories (long/short-term memo
ry deficits)
Difficulty understanding what you read
Easily during a task
Feeling too disoriented to drive
Forgetting how to do routine things

Forgetting the use of common objects (such as, what to do with the shampoo when you are standing in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence

Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed and/or slurred speech
Stuttering; stammering
Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
Word-finding difficulty
Using the wrong word

DIGESTIVE/HEPATIC

Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux; heartburn
Frequent constipation
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food/Substance intolerance
IBS
Liver function impaired; mild abnormalities
Increased appetite
Nausea

Spleen tender or enlarged
Stomach ache, cramps
Vomiting
Weight gain or loss

EQUILIBRIUM/PERCEPTION

Bite your cheeks or tongue frequently
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of Perception (not quite seeing what you are looking at)

Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them

EYES/VISION

Acuity changes not related to prescription changes
Blind spots
Blurred vision
Conjunctivitis
Diminished visual acuity in absence of actual vision change
Drooping eyelid
Double vision
Eye pain
Flashes of light perceived peripherally
Optic neuritis or atrophy
Oscillopsia (image jiggles)
Prescription changes more frequently
Pressure sensation behind eyes
Red and/or tearing eyes
Retinal damage
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes
Uveitis and/or iritis
Wandering or lazy eye

HEAD/NECK/MOUTH

Bell’s palsy (facial paralysis, one or both sides)
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes, nose and mouth (sicca syndrome)
Pain in ears, palate, gums
Periodontal disease
Prickling pain along skin of jaw
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches
Xerostoma (dry mouth)

MUSCULOSKELETAL

Arthritic pain that migrates from joint to joint
Carpal tunnel syndrome
Frozen shoulder
Intermittent joint swelling
Joint aches (arthralgia)
Joint pain, without redness or swelling
Loss of tone

“Lumpy, bumpy” long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness

Pyriform muscle syndrome
Reduced range of motion
Stiff neck

Writing causes pain in hand, arm shoulder

PAIN SYMPTOMS

Abdominal pain
Chest pain
Generalized pain
Shooting or stabbing pains

Painful tender points (FMS: 11 out of 18 tender points)

PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS

Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Decreased self-esteem
Depression or depressed mood
Feeling helpless and/or hopeless
Feeling worthless
Frequent crying for no reason
Helpless/Hopeless feelings
Inability to enjoy previously enjoyed activities
Irritability; over-reaction

New phobias/irrational fears
Panic attacks
Personality changes (labile, irritable, anxious, confused, forgetful)
Phobias (irrational fears)
Rage attacks; anger outbursts for little or no reason
Suicidal thoughts or suicide attempts

SENSITIVITIES

Acute or abnormal reactions to medications
Alteration in taste, smell, and/or hearing
Chemicals (alcohol, medications; lower tolerance for)
Food sensitivities
Increased perception of and sensitivity to noise

Light sensitivity
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)

SKIN / NAILS

Abnormal scarring
Acrodermatitis Chronica Atrophician
Blotchy or mottled skin
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull’s-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dermographia (minor scratch pressure on skin leaves vivid red welts)
Dry, itchy skin
Easily scar
Eczema or psoriasis
Fragile nails
Frequent skin irritations

Lymphadenosis benigna cutis
Nails that curve under or downward
Overgrowing connective tissue (ingrown hair, adhesions, thickened/split cuticles, cysts, fibroids)
Painful skin (abnormal/excessive pain when scratched or rubbed)
“Paper” skin (feels fragile, tissue-thin when rubbed)
Rashes on body, face
Vertical ridges or beads in nails

SLEEP SYMPTOMS
Abnormal brain activity in stage 4 sleep
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)

Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep

UROGENITAL / REPRODUCTIVE
Decreased libido
Discharge from breast or galactorrhea
Endometriosis
Frequent urination
Incontinence
Impotence
Infant: premature; low birth weight; low muscle tone; failure to thrive
Interstitial cystitis
Miscarriage or stillbirth
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Prostate pain
Swollen testicles
Other symptoms worsen before start of menstruation
Worsening of PMS

OTHER
Abnormal or other changes in sweating
Activity level reduced to less than 50% of pre-onset level

Burning sensation (internal and/or external)
Cancer
Changed voice
Changes in sweat odor/body odor
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Electromagnetic (EM) sensitivity (electrical storms, full moon, affect function of electrical devices)

Fatigue, prolonged, disabling, made worse by exertion or stress
Fibrocystic breasts
“Galloping” cholesterol and triglycerides
Hair loss (not related to age, hormones, diet, medication)
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Hoarseness
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat

Swelling/Idiopathic edema (fluid retention syndrome)
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Thickened mucus secretions (nose, bowel, vaginal)
Thickened “sleep” around eyes in mornings
Very attractive to biting flies and mosquitoes
Weight changes (usually gain)

COMMON CO-INFECTIONS AND DISORDERS
Babesiosis
Cytomegalovirus (CMV)
Epstein-Barr virus (EBV)
Ehrlichiosis
Herpesvirus
HHV6
Iron deficiency
Mercury or other metal toxicity
Mycoplasma
Systemic mold and/or mold sensitivities

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A Shadow Of Me

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The past couple weeks have been really tough; after spending a couple months feeling like I had hit a huge milestone in my Lyme journey with more energy, I have again hit a wall.
So about 11 months into my Lyme treatment I was feeling a lot better, had a lot more energy, was actually living again. But for about the past 5 weeks or so I have been struggling horribly with fatigue. I have also had some worse swelling and food cravings. My doctor is not sure what is going on but she ( my natural doctor not my Lyme doctor) thinks something is again blocking my detox pathway and is causing me to slump. Now besides that my body has also been battling whatever viruses are going around, so I think my body is just overwhelmed, and sleeping 9-10 hours on weekends just isn’t enough. Right now I honestly feel like I need to sleep for about two months until I get past this. My doctor wants to run another test to see what is blocking my detox pathway, but of course I need to just survive until I get an answer.
I feel like I had a moment in the sun, and it was my first real light in many years. Now I have sort of stepped back into shadow, and feel like only a fraction of a whole person. I hate “survival mode”, hate it, hate it, hate it.
Okay enough with the tantrum. I know that even though I am struggling I am still better than I was months ago, so I am still grateful. Another thing is that God has been revealing so much to me within these last couple months I feel like my inner self wants to explode out of this weak body and just go in every direction at once. I am afflicted but not crushed, perplexed but not in despair. I am down in body and have momentary sadnesses, but I have had times of unspeakable joy that has never been matched by the good times I have had in healthier times of my life. Thank you Daddy. Better days to come