I Will Not Suffer In Silence

I have NOT started the antibiotics yet. It’s complicated. The short story is that I’ve reached my breaking point in not being treated accordingly for my health condition; namely, that I have an autoimmune disorder which needs specialised care as opposed to symptom-based care.

The long story:

On Monday, I went to the doctor on self-diagnosis of sinus infection, and I wanted confirmation as to whether this was the case. I expected to get my ears, nose and throat looked at, the lymph nodes in my neck examined, rule out an ear infection, and possibly get scheduled for x-ray to rule out sinus infection.

None of that happened. Instead, I was flat out denied anything but over the counter drugs (Mucinex, Ocean® brand nasal spray, Tylenol), and was told to come back in 4 days if I was not better to get a prescription for Xanax, to take along with Sudafed, because I’d noted that I would not take Sudafed because the pseudoephedrine makes my heart race and gives me panic attacks.

I called the doctor’s office 2 days later and complained about my doctor. I demanded to be seen by another doctor. Instead of an appointment being made to be seen and properly looked at, another doctor prescribed antibiotics over the phone.

Result: I have no idea what I’ve got. I only have my assumptions. Does this even get documented in my medical file? How do I establish a pattern to tie it in w/ the immune deficiency stuff?

Here is part of my health profile:

• Endometriosis is an autoimmune disease.
  

• When I was 6 years old, I became allergic to the weekly allergy shots I was being given. My ma said the pediatrician told her I was allergic to my own germs. What that translated to, and I didn’t know it for years, was a giant red flag. Being allergic to your own germs means you have an autoimmune disorder. Instead of ma getting me some specialised care, she dropped the ball entirely. Why? Because we were butt-ass poor. So I grew up being sick constantly, which cost her more in the long run emotionally and financially.
  

• I have suffered from acute sinus infections since childhood, and it is known that “Acute sinusitis is much more common in certain patients than in the general population. For example, sinusitis occurs more often in patients with reduced immune function”. I even developed bronchitis at least once every two years through high school. It didn’t help that my ma is to this day a pack-a-day smoker who keeps the house sealed up, so I had to grow up a smoker along with her, even though I gagged and breathed shallow and lived in my bedroom to try to avoid it.
  

• When I was 21 years old, I developed acute pancreatitis, which can also be triggered by autoimmune disease. The E.R. doctor chalked it up to me being an alcoholic, because I was 21 years old, in college, and it was New Year’s Eve. What he didn’t care about was my history of severe allergies, the fact that I was raised extreme Christian and was working as a toddler teacher for a Christian daycare. Does this look like a raging alcoholic to you???
  

• In 2006, I was doing diet elimination for pain management of the endometriosis, and when I added back in wheat and yeast, my body flipped out. My allergist strongly suspects Celiac Disease and wants me to go for an endoscopy but so far, I’ve been a bit skittish and have just been abstaining from glutenous foods in the meantime.
  

• For most of my life, if not all of it, I’ve had a low body temperature. Normal for me is 97.4°F. I’ve read that it’s still within the normal range, and numerous thyroid blood tests over the years have come back negative for hypothyroidism, but I think it’s wrong that I’m always freezing cold. On a 90°F day, I can catch a chill taking a nap.

There’s more, but like the thyroid issue, other stuff still needs official confirmation/diagnosis for me to start really talking about it.
So I am mad. I want correct treatment again, based upon my medical condition, not being moved along like cattle on a conveyor belt.

For too many years, I have not received proper care. I think the last time any doctor tried to look into my entire medical history and treat me accordingly was a doctor down in San Jose. That’s about seven years ago. I can’t even remember her name, for shame.

When we go to a doctor’s office, we expect personalised care. If I wanted conveyor belt treatment, I’d go to a walk-in clinic. This is how my doctor’s office seems to be run. I disapprove. I am sending a complaint letter and based upon the reply I get (if any at all), I may have to shop for a new doctor’s office all together.

And in the meantime, I’ll start the antibiotics Real Soon Now. I have an appointment with the new doctor on the 24th, but I’m not sure I can wait that long. My ears are threatening to explode. Taking 1200mg twice a day of the Mucinex has not expelled forth the mucous as promised, nor has the neti pot and nasal spray helped.

I’ve hit the 10-day mark with being sick with a cold/sinus crap. I keep hearing that people have been sick for over a month with this.

It’s been migrating into my ears, which is why I went to the doctor the other day. Today is even worse. Headache won’t stop despite 1000mg Tylenol, continued neti pot flushings, 1200mg Mucinex twice daily, Ocean brand salt spray applied throughout the day, zinc and vitamin C twice daily, lots of fluids, and laying on my side (alternating) to drain the Maxillary sinuses.

On my way to work this morning, I got a killer headache, my ears became more plugged, I developed light and sound sensitivity (which has been intermittent for days but is now continuous), and my frontal sinuses are the source of the major head pain at this time, rather than the maxillary sinuses. The snorking of snot has produced what I told Dr. Fisher it would - a bloody nose.

I called the doctor’s office this morning and filed a complaint against Dr. Fisher. I put in a request for a new doctor to be named as my primary (I have PPO coverage which means I don’t need a primary, but I want one assigned because my health condition warrants that SOMEONE be a stable point of contact. I’ve learned this over the years - all my medical file needs to be in one place and one person securing the knowledge. The problem seems to be that doctors PREFER to NOT know all the details about patients anymore, and just treat us like cattle on a conveyor belt).

I’ve had an on-call nurse call me back already for more info, and asked if my doctor had discussed antibiotics. HAHAHAHA! NICE.
I launched into a tirade against the doctor, and the nurse said she’d have an on-call doctor call me back and likely prescribe the antibiotics.

On top of all of this, the Endometriosis symptoms have started, because I’m due on Sunday (in 4 days). It started yesterday afternoon, with moderate jabbing pain in the left pelvic/ovarian region, and migrated down my leg (as Endo is known to do).

Despite the endometriosis pain, I couldn’t take not being able to enjoy the warm sunny weather any longer, and so yesterday I took the baby I care for for a stroller ride down to the local seaside car park and back. It was a total of a half a mile round trip, and it’s all my body could take because I’ve not had much exercise in the past couple of months due to various reasons and excuses.

Today the pain is centered low in the uterus, near the bladder (that’s where the remaining disease was at time of diagnosis and had to be left in me to grow, because removing the disease from the bladder would have punctured my bladder and I’d have been on a cath for the rest of my life). It’s a dull, continuous pain, and radiates down both inner legs to my knees. This is ‘normal’ behaviour for the endo for me. I feel like I should check myself every half hour or so, because it feels like I could start at any second. This is also ‘normal’ for me.

The fatigue should set in full force by Friday. As if I’ve not been out of breath and tired as it is from being sick.

I understand getting sick. I just want prompt treatment. While healthy people can just let it run its course, I can’t afford to do that. And I’m tried of proving this to the doctors.

AHA! The on-call nurse just called back. A new doctor is faxing in a request for Zithromax for me right now.

FASCINATING.

So we have two ends of the spectrum, folks; doctors who absolutely refuse to prescribe antibiotics out of fear of contributing to drug-resistant bacteria, and doctors who still let patients dictate when they need antibiotics. And what happened to the in-between? You know, the throat culture swab? Looking with a scope in my ears, nose and throat?

Despite my strong desire to have this illness remedied ASAP, it’d still be nice to know EXACTLY WHAT IT IS, because it needs to be documented in my charts as part of my history. Not just, “pt req antibiotics” or somesuch without further explanation.

Yeah yeah I know, I’m never happy. It’s just that the medical industry, at least in the U.S., is seriously flawed and needs a major overhaul.

The doctor says I don’t have a sinus infection. She didn’t look inside my mouth, nose or ears. She sat across the room from me and emphatically stated I do not have a sinus infection and will not prescribe antibiotics.

I rehashed my medical history for this woman, noting all the autoimmune issues I have (allergies, gluten intolerance, pancreatitis, endometriosis) but she refused to budge.

She told me to do the same thing she told me last time which didn’t work; use Mucinex and Ocean saline, and if that doesn’t help, use Sudafed. I told her the last time I tried the Mucinex and Ocean saline, I still had to come back a week later and get antibiotics for a full on sinus infection. I asked if she’d prescribe by phone so I don’t have to waste my money when I know I’m right. She said NO, she will not prescribe antibiotics by phone, she has to see me.

She explained how the sinus cavities worked, and told me that the ones I’m complaining about in particular are the Maxillary sinus cavities, which have a problem of properly draining because the ducts to those cavities are located up towards the bridge of the nose.
She told me that blowing my nose just blows the snot back into these cavities, and what I really should be doing is snorking the snot back up my nose, down into my throat, and spitting it.
Sounds sexy.

She told me again she’d really like for me to take Sudafed.

I told her I can’t take Sudafed - the pseudoephedrine in it makes my heart race and gives me panic attacks. She told me to use Sudafed P.E., instead. I told her I can’t even take that, because it also makes me loopy.
Her reaction was basically ‘oh well’ which if I recall, was her reaction last time, too. I asked if she’d give me xanax to go with the fecking Sudafed then - she said YES.

WHAT KIND OF ASSHOLE DOCTOR IS THIS!?!?

And then I remembered, I was reading back through my journal lately, and I was supposed to have fired this doctor. As a matter of fact, I tried to but it didn’t get noted, and then I just got lazy and didn’t follow up.
This time it’s final. She’s fired. Doctor Mary Fisher is fired. I want to appoint Dr. Sellman instead. Let it be noted.

SO to rehash, when Steph is exposed to someone who has a cold and/or brewing sinus issues, Steph is to immediately take the following steps:

• Always carry Life Shield Throat Defense and spray it in back of my throat immediately after I think I’ve been exposed.
• Begin using neti pot immediately once I am feeling stuffed up OR have runny nose.
• Continue taking vitamin C and zinc, but double up on it.
• Scale back on carbs and drink and eat LOTS of fluids, continuously.
• Start flushing nose with Ocean spray, and snork the snot back into my throat and spit, rather than blow my nose, to properly drain the maxillary sinuses.
• Take Mucinex to ensure the sinuses are not clogging up.
• Take Tylenol for sinus pain.

I did everything right except for flushing with Ocean spray, snorking the snot and taking Mucinex and Tylenol.

So next time, and there WILL be a next time, I have to do those bullet points before I come whining to a doctor.

FINE. Fine, I’ll play ball. AGAIN.

I just hope I don’t have to prove her wrong again because ya know, normally I’m a “it’s the point of the matter” kind of person and will fight to the death, but right now, with my health, I don’t WANT to be right. I just want this over with. I’ve been sick since January 4th - it started with yellow boogers and went full on madness the evening of January 5th after being exposed to baby fever germs.

I want a strong built up immune system - please to be acclimating to the kidlets, dear immune system!

And right this second, I want bed. But laundry must be finished. *sigh*

I appear to be getting worse. I already realised I wasn’t feeling better Thursday and Friday, and on Friday afternoon, the baby I care for through the week got a fever again, despite being on antibiotics since Monday night or Tuesday.

It doesn’t help that I didn’t rest yesterday - I helped clean house a bit, then took B to a diner to load up on protein, then took him to the Tiki bar for six hours for his birthday drink-a-thon (I only had virgin drinks thankyouverymuch). During our stay at the tiki bar, even though all I did was sit in a chair, I could feel the symptoms worsening. It felt like I was breathing underwater. I felt fuzzy and discombobulated. I remarked to the people who’d been consuming alcohol that I fit right in, in that sense, because I sure as shit didn’t feel ’sober’. All the benefits without the making an ass of myself and hangover I guess…

After our last friends departed, B finished his last drink for the evening and I shuffled him off to the car, poured him into said car, and took him home.

HOWEVER! He was pretty damned drunk and wanted to go dancing. There was only an hour and a half left of Club Gossip, and B was rearin to go for it. He was singing and swinging at the air - getting pretty rowdy.

Not wanting to deal with a feisty drunk on my own, I decided to indulge him in his desire to go dancing, cuz I had no energy to go for a long ‘walk-it-off’ in the cold night air. So I drove us to the club and directed B to the water pitchers on the counter. Thankfully, within a short time after we arrived, the bar stopped serving alcohol, so I didn’t have to worry about B trying to keep his buzz going. He drank water, danced and worked off the drunkenness. YAY!

I ended up dancing - on the first song I danced to, my knee became really painful again. Definitely time to start wearing knee braces on a regular basis again. I danced carefully to about 5 or 6 songs, worked up a good sweat, and figured that might do wonders to getting the gunk out of my system.

Bar closed, we went home, I popped some NyQuil gelcaps and went to bed.
I noticed my neck was hurting again, too. It was from the dancing again, but made worse I’m sure by the fact that I can still feel that my lymph nodes are still swollen.

Slept til around 12:30pm, only waking cuz B was leaving for band practice.

I’ve had the Green Goo since Friday morning. I’m not waiting for another week to pass like the Interwebs tell me to before I see a doctor. I know I have a sinus infection. I know that anytime someone has a cold which infects me, that it WILL turn into a sinus infection, cuz I have a weakened immune system due to the Endometriosis. The thing which I got all through childhood and into my teen years was sinus infections and bronchitis. At the drop of a hat. BAM. sick.

This latest round took about 8 hours to floor me and put me in the current state of SnotFest. I felt it happening last Sunday and when I blew my nose, I had yellow boogers. I didn’t feel like death warmed over though. My fate was sealed as I felt further infestation on Monday when I went to work and dealt with a baby running a fever who’d been sick for days. She coughed or sneezed on me, a droplet hit my lower lip, and by evening time, I was horking sinus myself and the death was settling in at full speed ahead.

Wheeeee.

On the bright side, B didn’t have a hangover and had a really good time yesterday.

Yesterday afternoon I started feeling much better. I was convinced that earlier that morning having been the 72-hour mark, that the cold crested and would be going away, now.

However, by the time I got home at 6pm, I was a coughing, phlegmy mess again. The yellow gunk with blood in it returned.
*sigh*

This morning, I felt so horrible that I wasn’t sure I could make it in to work. My phlegm was dark green. I think I felt this badly yesterday, too, but didn’t have the green gunk. I did go to work and instead of getting better with the neti pot flushes and Cepacol and Fisherman’s Friend lozenges that I bought yesterday… I’m getting worse. The green gunk turned back to yellow again but still I feel like absolute crap.

My eyes feel puffy and they hurt. My ears are clogged and hurt from the pressure. The neti pot can’t get through anymore. My head hurts. My neck hurts - I’m convinced that swollen lymph nodes have a negative impact on bulging discs in the cervical spine, cuz my neck feels like it wants to ‘go out’ again.

Woke up feeling so bad this morning that I seriously considered not coming to work. The sore throat was nearly unbearable and I coughed up so much gunk that my throat started bleeding.

I then remembered what a fellow nanny told me recently - she says she measures how sick she is by whether she can drive in to work or not. Well despite me being whiny and miserable emotionally, I could still focus and drive. So I gathered up a grocery bag full of food and liquids and hit a Walgreen’s for throat lozenges on the way to work, and went in.

As of about 1pm, I am having steady knifing pains in my right pelvic area. This followed a bowel movement.

Perhaps this is a continuation of the mittleshmerz and having a BM made it worse (cuz I’m always constipated).

My bladder doesn’t feel too great lately, either. The whole pelvic region seems to be hating on me 12 days before george is due. Well, it never actually stopped hating on me since scromping on Saturday, did it? :(

That’s all I got right now. I’m at work and the baby needs interaction.

Well holy shit. I thought the spotting before my period, with dirty blood, started sometime around September 2008. I am wrong!

It’s been going on since at least January, 2008. The ovarian cyst may just have been an extension of that. What else is going on with me?

Yeah you guessed it, now I’m all worried again.

I’d like to add right side inner ear pain to the blocked ears feeling, and right side jaw pain as of 1:30pm…

I’ve been super tired and very cold. Earlier this morning, I got in a 20 minute nap while the baby slept. My head still hurts.

While I was rocking the baby to sleep again a few minutes ago, I got a sudden vertical pain down what feels like my uterine area. I jumped and wondered if the pain would continue. Would I have to leap from the rocking chair with the baby and call for the parents? One of the parents - the father - is home today, sick from an ear infection. He’s been home since yesterday. The mother seems fine so far. The baby got put on antibiotics last night but is still coughing and has a runny nose. She’s not feeling feverish today though, which is good.

All I can do for the uterine pain while at work is take Ibuprofen. For the general cold/sinus issue I have going on, I’ve got the neti pot. I’ve used it twice today, will use it again after this journal entry. And I’ve been drinking lots of juice and electrolyte water.

I’ve got headache, plugged ears, worsening sore throat, body aches, major fatigue.

This goes along with the pelvic, rectal and anal pain, and oh, get this, right side shooting ovarian pain started tonight, too.
Sounds about right - last month I had mittleshmerz 8 days after my period ended. And here we are again this month, same thing.

I went to bed at 8pm, I was so tired. But then I realised I hadn’t made lunch for myself for the rest of the week. So up I got again and had to make a cornish hen so I get some kind of protein with all the fluids I’ll be taking in.

Wheee.

Tis the season for sickies. All of my friends have gotten sick and I’ve stayed away from them for the most part. I’ve done very well taking 500-1000mg Vitamin C and 1 zinc pill each day. Even when my husband came down with a cold/sinus crap, I told him NO TOUCHY! and used Chlorox wipes and swapped out towels regularly and used my own towel completely in the kitchen and for the hand towel in the bathroom.

But I could only hold out for so long.

My husband was feeling better on Saturday and so we spent quality intimate time with each other. I take advantage of every moment I can when I’m not being affected by Endometriosis to be close to my husband physically. Sometimes that poor man has to wait two or more weeks. I was hesitant of course, knowing he’d been sick recently. But his cough went away, sinuses cleared up, so I thought sure, okay, he’s fine.

Sunday night, I had yellow boogers and a stuffed nose already. He’s the only person I’ve been around in such close proximity. I still blame him.

“From the time a cold virus enters the nose, it takes 8-12 hours for the viral reproductive cycle to be completed and for new cold virus to be released in nasal secretions. This interval is called the incubation period.

Cold symptoms can also begin shortly after virus is first produced in the nose (10-12 hours). The time from the beginning of the infection to the peak of symptoms is typically 36-72 hours.” - CommonCold.org

“People are most contagious for the first 3 or 4 days after the symptoms appear and may be contagious for up to 3 weeks. Although some colds can linger for as long as 2 weeks, most clear up within a week.” - kidshealth.org

I rest my case.

On Monday, I returned to work after a two-week forced vacation, because the parents I work for were on a forced vacation. Companies cutting back during hard financial times and all that. Anyway, when I returned to work, I was met with a snot-ridden infant with a 99°F temperature.
As is typical of parents (I spent over five years working in daycares), I was told the baby WAS sick but is now getting better. However, just before she left the house, mom took baby’s temp, revealing the fever, apologised and dashed out of the house.
I did the best I could and washed my hands a lot, but an 8-month-old doesn’t know how to cover her mouth when she sneezes and coughs. I felt a droplet hit my lower lip at one point when the baby was in close range and decided to do raspberries. Ugh. I cringed. One droplet is all it takes.

I woke this morning barely able to breathe out of my nose.
Right now my ears are plugging up and I have a headache.

I know I’ll be sick as a dog by Thursday. I always get sick so easily. So why the heck did I become a nanny or teacher for a living?!?!? Well the answer is, I got sick even working in corporations, even for small mom and pop stores. Because people in general are not sanitary enough for me, because I have a compromised immune system due to or in part due to the Endometriosis. I was already getting sick because of the cold my husband brought home to me. This is the nail in the coffin so to speak.

The parents of the baby I work with took her to the doctor this morning. I was on my way in to work and called to check in with the family. I was told that the baby had a cold which progressed into a ’secondary sinus infection’, and she’ll be on antibiotics, but not until tonight when they can get her prescription filled. The mother dashsed off to work and said the father was home sick as well, but still needed me for the day because he’s not well.

I got upset, but then thought about the hard reality: I’ve already been exposed to the virus. Firstly through my husband, then yesterday through the baby. It’s already too late. May as well go in to work and earn my dollars while I can, because I’ll be missing more work than just for george this month.

So here I am, not a happy camper, wishing the world would be nicer to me. :p