12 Weeks.

HAPPY HALLOWEEN!!!

I have now been sick for 12 weeks.  Here is the timeline I have been keeping [interspersed with blog photos from the relevant time periods – some from blogs I haven’t published yet]:

8/8/17-9/17/17:  low grade sore throat [a 3 out of 10], but throat isn’t red or swollen inside.  also have low level swollen glands on outside of neck, fatigue, ​lack of appetite, low grade headache off and on, and low grade fever [99.4° – I’m usually a solid 97.3°].

8/25/17:  saw nurse [Family Medicine], temp 99.4°, instant strep negative, “probably a virus”.  She suggested I call an ENT, but I was unclear why’d she’d jump to ENT without doing bloodwork, etc. first… I guess I should have called the ENT right then, but I thought bloodwork made more sense.

progress so far on the chameleon mural. far from done

9/5/17:  saw doctor #1 [Family Medicine]. temp still 99.4°. got bloodwork done.  strep, mono, CMV, lyme all negative. “Probably allergies”.  [allergies, really???]

9/9/17:  noticed 3 little white-headed bumps on the webbing at the back of my throat [between the tonsils and uvula].  no idea exactly when they showed up, but i know they weren’t there before.

9/12/17:  saw doctor #2 [Family Medicine].  He said “you’re here for… *consults chart*… allergies?” and I said “it’s absolutely not allergies!” *consults chart again*  “looks like you’ve had a sore throat for… 5 weeks?  wait, you’ve been here 3 times for the same thing and no one has treated you yet?”  NOPE!  He prescribed a 5-day z-pack and recommended I see an ENT.  i forgot to mention the bumps at the back of my throat.

9/22/17:  felt better for a few days after the z-pack, but sore throat and fatigue are back.  thankfully the other symptoms are gone.

a presentation at wolf hollow in ipswich, ma

9/28/17:  1st office visit with the ENT for a throat culture. told him about the 3 little bumps at the back of my throat.  he prodded them and said “those can be very telling…” but didn’t say telling of what.

10/1/17:  throat culture results came back:  staph infection in throat.  Not the “bad” staph, thankfully.  prescribed Bactrim.

10/2/17:  had allergic reaction to the Bactrim.  tightness of breath [needed inhaler], super itchy [took Benedryl].  Took a 2nd Bactrim at 8pm just to make sure I was allergic to it.  Yep.  Reaction even worse [more inhaler, more Benedryl].

10/3/17:  called ENT back.  they prescribed Cipro, which I can’t start until 48 hours after last Bactrim.

10/4/17:  began Cipro at 8pm, 7 day course.  Cipro is SCARY STUFF!  It’s what they give people to treat Anthrax.  it also has huge warnings on it, like:

“Fluoroquinolones, including CIPRO, have been associated with an increased risk of tendinitis and tendon rupture in all ages. This adverse reaction most frequently involves the Achilles tendon, and has also been reported in the rotator cuff, the hand, the biceps, the thumb, and other tendons. Tendinitis and tendon rupture can occur within hours or days of starting CIPRO, or as long as several months after completion”  OMFG!!!

10/11/17:  Cipro done, still have sore throat and fatigue.  still have the bumps at the back of my throat.  called ENT & nurse said it can take an additional week for the Cipro to work and to be patient.

10/17/17:  sore throat and fatigue went away for a few days but now are back.  called ENT again.

10/18/17:  2nd office visit with ENT [was able to get in immediately due a very fortunate cancellation on their schedule].  He prescribed “Magic Mouthwash” – 1 tsp. twice a day, 3 week course.  he seemed to downplay the sore throat and the bumps.  he didn’t take another culture.  my feeling is he assumed the [scary-as-hell] Cipro killed anything major, and what I was left with was a secondary fungal or bacterial infection.  I left disappointed but decided to give the mouthwash a try.  It’s primarily used for chemo patients and is supposed to kill all bugs in your throat.  It has Lidocaine in it and is meant to be swallowed.  it tastes minty and creamy and makes my mouth numb.

10/29/17:  sore throat & fatigue went away for a few days, but now are back.  finally decided to research the bumps at the back of my throat.  didn’t even know what the webbing they’re on is called.  after some googling and medical diagrams I learned the webbing is called the palatopharyngeal arch.  it [roughly] connects the tonsils to the uvula [little dohickey that hangs down in the back of your throat].  I learned that pimple-type bumps on your palatopharyngeal arch are actually abscesses [awesome] and they signal an infection.  I’m not surprised to learn that, but it makes me wonder what f’ing infection I have if a z-pack, Cipro, and Magic Mouthwash cannot cure it.   sometimes i want to scream and cry and throw things and have a pity party.  i can usually hold myself together, but some days i break down.

10/30/17:  called ENT, no call back.

10/31/17:  called ENT again.  listened to their whole voicemail this time.  they’re switching to a new computer/medical system and call backs will be delayed.  awesome.  called receptionist a few hours later and asked if I could make an emergency appointment.  She said only the nurses can do that, and to be patient, and that the nurse will call me back.  *sigh*

10/31/17 UPDATE:  the nurse finally called me back at 3pm and said their whole scheduling system is still down and she’ll call me back asap to get me in asap.  Let’s hope!

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6 Comments

  1. Wishing you all the best.
    Liebe Grüsse

  2. This is all so scary! Three months – omg! If a good diagnosis and cure doesn’t come soon, you’ll need to go to Boston. But you need a referral to a specific doctor, and I’m not sure who that will come from. If Dr. M. can’t cure you, the referral should come from him …. but will he?
    Worried, worried, worried!

    • I don’t know, I’m taking things 1 step at a time, otherwise I get way too overwhelmed. step 1 – wait for call from ENT today. step 2 – see ENT with Jim. step 3 – ???

  3. Good grief, this is a scary and depressing story, appropriate for Halloween! The horrors of American medical care! Aren’t these medical folks appalled that you are still sick? Why aren’t they trying harder to diagnose you? I think you need to get mad at them–if you have enough energy. I’m so sorry you’re still dealing with this. Sending positive thoughts for what can no longer be called a speedy recovery. Just get well!!

    • Thanks, D’Arcy! the ENT didn’t seem very appalled. He said if my throat didn’t get better he’d take my tonsils out, but I don’t want him to – the infection has always been in the back of my throat, not my tonsils. If I can get a 3rd visit with him, hubby is coming with me. If we don’t get the answers/treatment we want, I’ll go to someone else. I did get a bit mad at him during the 2nd visit when he prescribed the mouthwash crap. I told him how the fatigue is affecting my life and starting to affect my job (all I do is work and sleep, I have no other life). He seemed to think the mouthwash would work. Asshole. I’m so done with this shit. 🙂

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