valley fever

I have to admit something.  Yesterday was not such a good day.  I got a few things accomplished (made a phone call, washed a load of laundry and put it away, worked on some blog stuff) but most of the day was spent curled up at the foot of my bed feeling sorry for myself.  I didn’t change my clothes from the ones I slept in, didn’t brush my hair or my teeth, didn’t shower and I more or less was a huge whimpering mess by evening.

My husband gave me a little peptalk reminding me about how I feel much better on the days I force myself to get out of the house.  I just grumbled, thought to myself that he was being insensitive (he wasn’t) and wallowed some more.

Before I fell asleep for the night (which was late) I decided that I *do* need to do certain things every day.  I don’t want to spend most of the next 6-12 months wallowing and not enjoying my family and my life.  I was cuddling with Katie at bedtime and told her I’d take her to Barnes & Noble today to buy books and she was thrilled.  She’s been re-reading her Ramona boxed set, so I knew she’d be excited to get new Beverly Cleary books.

I woke up at 9am, forced myself to shower, brush my teeth, put on basic make-up and then I accidentally took a bit of a nap.  *blush*  Amazing how something as simple as showering and brushing one’s teeth and doing make-up can be that exhausting.  But Valley Fever is a nasty, insidiously mean illness that sucks the energy right out of me!

At noon I was moving again and I announced to the kids that we were headed to San Tan Village to go to Barnes & Noble and lunch, followed by the Gilbert Farmers’ Market at Power Ranch.  Kayla announced she had a shift at 3pm (she’s doesn’t usually work Wednesdays) so that sort of foiled MY grand plan.

Ok, quick change of plans…we had two hours to go to Barnes & Noble and get a fast lunch.  We hit the bookstore and then ate In & Out in the car.  We made it home just in time for Kayla to take my car to work (I’m not driving yet since I’m still suffering severe dizzy spells) and now I’m obviously sitting here blogging.

While I’m very exhausted, I also feel less depressed since we went out and did something fun, got some sunshine, etc.  I figured since I’m the type of person who hates lists but realizes that I don’t get much done without them, I decided to make a daily list to keep myself from wallowing like I did yesterday.

1) Brush/Floss

2) Shower

3) Brush out my hair, comb into presentable shape for drying naturally

4) Do basic five-minute make-up routine (Bare Minerals foundation, concealer, “well-rested” eye shadow, bronzer/blush, mascara and lipgloss)

5) Put on real clothes, casual is fine but no PJs

6) Take AM meds, have coffee or tea and eat something.

At that point, I might need to rest but then at least I’m ready for the day and won’t be wallowing.  🙂

One other thing that I think is helping….I have trouble getting in enough water even when I feel good, so it’s been hard feeling icky and being nauseous a lot.  For some reason Smart Water and is the only water that doesn’t seem to upset my stomach at the moment, so I’m buying the 24oz bottles en masse and keeping a bottle by my side all day long.  I’m trying to drink 4 of them a day, minimum.  I also am carbonating some water with the soda stream and making spritzers with flavoring essences, etc.

My next goal is finding some juice and smoothie recipes I like.  I want to incorporate as many fruits and veggies into my diet as I can.  I have a juicer and a Vitamix so I have no excuse to not use them! 😀

…at least for me.

Dealing with this has had a lot of ups and downs.  On my best days, I feel achey and fatigued but I get little bursts of energy.  Unfortunately those don’t last long!  They do last long enough to prepare a quick meal or run a quick errand.

On my worst days, my whole body aches to the point that I can’t get conformtable in any position.  I can’t get myself out of bed.  And I have to lay across the foot of my bed, propped up on pillows.  Don’t ask me why…but for the past several weeks, that’s the only way I can lie down comfortably.

I get frequent bouts of chills, hot flashes and terrible sweats.  I have the worst cough I’ve ever had (and I have had asthma since I was three, so that’s saying a lot), which seems to be improving since I started fluconazole, but I still have bouts where nothing controls it (not even the strongest prescription narcotic cough meds).

I’m physically and mentally tired.  Sometimes so tired I can’t sleep.  I have periods of feeling like my whole body is buzzing with energy.  I have other periods where I’m so drained that I completely crash.

I’m currently very dizzy and thus haven’t been able to drive.  It may be from the fluconazole and I’m sincerely hoping it goes away.

My hair seems to be thinning, although I could be over-reacting.  I love my hair and don’t want to lose it!

Valley Fever symptoms can be different for everyone.  Typically, people will need 6-12 months to recover from non-disseminated disease–that’s a long time to wait to feel “normal” again.

From: http://valleyfeversurvivor.com/symptoms.html

Below is a list of many possible Valley Fever symptoms in humans, although symptoms of Valley Fever in dogs, cats, and other animals can be similar. Canine Valley Fever, Feline Valley Fever, Valley Fever in horses…all of it can include the following list of symptoms:

Flu-like symptoms	Malaise/chronic exhaustion
Fever	Muscle aches
Shortness of breath/wheezing	Muscle stiffness
Coughing (can be chronic and severe)	Joint pain
Coughing up blood	Joint swelling
Chest pain/pressure	Joint stiffness
Night sweats/Chills	Leg/ankle/foot swelling
Headaches	Photosensitivity
Nausea	*Vision problems/blindness
Loss of appetite	**Neck stiffness
Weight loss	**Inability to focus and concentrate
Rash	**Foot drop or partial paralysis
Burning sensations at various parts of the body (foot, joints, etc.)	**Severe head pain (as opposed to a normal headache)

*This can be a sign of lesions in the eye, but also a side effect of Vfend (voriconazole), a medication use to treat Valley Fever. **These could be a sign of meningitis from Valley Fever and may therefore require aggressive antifungal therapy.

Valley Fever is often misdiagnosed as cancer, tuberculosis, or bacterial pneumonia. It can disseminate (spread) throughout the body. The fact that the symptoms of Valley Fever vary so greatly is a part of the reason misdiagnosis is so common. In addition, the lack of training and lack of accurate information available to doctors is a contributing factor in the frequent misdiagnoses of this devastating illness.
The disease can cause hydrocephalus (harmful pressure from spinal fluid on the brain), verrucose ulcers (wartlike outgrowths on the surface of organs and skin), arthralgias (joint pains), myalgias (muscle pains), otomycosis (fungal infection of the external ear canal), hypercalcemia (extra calcium in the blood that can be fatal) and other terrible conditions.

The simplest, fastest description of Valley Fever is that the disease can create lesions or inflammation in nearly any part of the body. The fact that one can consider the disease in such simple terms should never be taken to mean anyone should ignore it’s deadly, painful, or debilitating consequences.
The following problems caused by lesions are only the tip of the iceberg: Lytic lesions involve rupture of cell membranes, keratotic ulcers are scaly and wartlike, and the disease can create lesions on other internal organs or manifest in visible, hideous skin conditions.

Depending on where Valley Fever causes inflammation within the body, a patient may experience arthritis, conjunctivitis, endocarditis, meningitis, myocarditis, osteomyelitis, pleuritis, tenosynovitis, vasculitis or a variety of other painful or life-threatening conditions. Meningitis, the swelling of the brain’s lining, is universally regarded as the most deadly and dangerous form of Valley Fever. It occurs frequently in patients who have the disease spread from their lungs.
Valley Fever usually starts in the lungs and can disseminate to virtually any part of the body such as:

skin	lymph nodes
bones	eyes
joints	heart
spine	kidney
brain	thyroid
liver	gastrointestinal tract
testicles	genitourinary tract

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In early March of 2013, I came down with what I thought was a mild cold.  My four children had been sick with varying degrees of upper respiratory viruses so I wasn’t concerned about myself at all.  After a week or so, breathing was becoming more and more difficult, so I went to urgent care where I was prescribed 10 days of Augmentin and a five day course of prednisone.  I wasn’t surprised that my asthma seemed to be flaring…that was normal for me.  I found it odd that I was so fatigued all the time that I couldn’t even really get out of bed.  I just figured, “Wow, being almost 40 really makes a difference!”  When I was still just as sick (and coughing even more constantly) ten days later, my urgent care doc ordered bloodwork, including cocci, and referred me to a pulmonologist, who was able to get me in within the same week.

While waiting for the day of my pulmo. appointment, I saw my PCP because I feared my asthma was becoming worse.  He listened to me and assured me that I was breathing fine and was in no immediate danger (which the pulmo. also confirmed).  My PCP was quite certain my cocci test would be negative and that I just needed to get my asthma under control.  I completely agreed.  I still thought it was odd that even codeine and hydrocodone cough syrups weren’t really touching the constant, dry, tight cough I was experiencing.  I actually would have to take one of those and Delsym or Robitussin to get any reprieve, even a short one.

On “pulmo-day” I totally expected to get a few new asthma meds and be sent on my way.   My cocci result was still outstanding so the pulmo’s office called the lab and found out I was positive and said that titers were being done.  I was told it’d be at least another 3-4 days before final results were in.

The pulmo. prescribed 400mg daily of fluconazole and put me on Advair and a longer course of oral steroids.  He told me to nebulize myself with albuterol and atrovent at at least twice a day and to drink as much water and rest as much as possible.  He said I’d likely be fine within 6-12 months and that we’d know more once we had the titers back.

I’ll be going back for some respiratory function tests and a C/T scan at some point, but we’re still waiting for titers.

The more days pass waiting for titers, the more frightened I become.  The stronger the disease is, the longer it takes for the test to conclue.  The stronger it is, the greater risk for dissemination.

Since I’m a type 2 diabetic with poorly controlled blood glucose levels (I’m on 2000mg of metformin for PCOS and it barely improves my BGL) I’m in a higher risk group for dissimmination.  I’ve asked my PCP to add another oral diabetes med to my regime, so that I can give myself a better fighting chance over here.

Currently still in a holding pattern and I don’t like it!

When I moved to the Phoenix area in 2005, I knew nothing about Valley Fever.  I got a quick education in 2007 when our chocolate lab, Brownie, suddenly began to lose weight and experience malaise.  He was diagnosed with Valley Fever and did not respond to the anti-fungal medication we tried.  He died within two weeks after spending several days in a doggie ICU having quarts of fluid drained from his chest cavity, among other terrible things.  I was visiting him one night, about to authorize a blood transfusion, when he began exhibiting symptoms of a massive stroke.  We knew his fight was hopeless and asked the vet to euthanize him as quickly as possible because we could tell he was very frightened.

In the spring of 2011, our other dog, Liberty, developed a cough.  She tested negative for cocci and our vet determined she had allergies.  I wish I’d known about the high rate of false negatives on the cocci test, because I would have gladly retested her.  A year later, she developed lameness in her right front leg and upon investigation we finally found out it was disseminated Valley Fever.  She also did not respond positively to medication and was in a considerable amount of pain due to the disemmination to her joints.  We put her to sleep in July of 2012.

Between 2007 and 2013, I was tested for cocci several times.  As an asthmatic prone to bronchitis and pneumonia, I had no trouble getting physicians to order the cocci test because almost yearly I would find myself on nebulizer treatments due to asthma related to bronchitis or pneumonia.  My cocci tests were always negative to my relief, but again, I didn’t realize until recently that there is a very high rate of negatives.  I never had a test repeated…there always was about 18 months between tests.

I would eventually recover from my bronchitis/pnemonia/asthma symptoms, but hadn’t felt I’ve had good control with my asthma since around 2007.  Doctors have said my lungs look great (on xray) and sound fine, so I was basically told this was in my head.  I atrributed my frequent symptoms of shortness of breath and dizziness upon exertion to being out of shape and overweight and also to GAD (generalized anxiety disorder).  I eventually accepted that I needed antidepressants and anti-anxiety meds to give myself the ability to ignore the frequent feelings of not being able to breathe properly.

It was easy to overlook my issues because I could breath fine most of the time…the main problem I had was that every time I had even a minor cold I’d have an asthma flare.  And I couldn’t ever really exercise without becoming short of breath and needing my inhaler.  Even while on inhaled steroids and allergy medications.  I enjoy performing in choir and musical theater and began to find that I was becoming winded just singing.  Even at my 30 minute voice lessons.  I just kept thinking that I was going to have to make time to see an allergist/asthma specialist but being busy and not particularly liking dealing with medical issues, I kept putting it off.

I think it’s posible that I’ve had Valley Fever multiple times or that I’ve been dealing with it since my issues got worse in 2007.  It was easy to pass my symptoms off as worsening allergies and anxiety, but now I’m really wondering.