This Is Probably Gross and It Meanders

Just FYI the toddler appears to have avoided the stomach flu. I think she may have had a mild case as evidenced by some wet hiccups that she swallowed, but other than that she was fine (even whilst channeling Linda Blair).

That was the gross bit. Now for something else.

The lesson I took from yesterday is I can't do anything and expect to feel well. Or rather, I may choose to do ONE thing after which the rest of the day will involve laying prone, panting for air and feeling like I'm going to pass out. Plus using the rescue inhaler when the asthma flares from the strain. Even sugar doesn't help any more.

This is ridiculous. The internet says I should recover from steroid withdrawal anywhere from 2 to 7 days up to several weeks.

The thing is I HAVE A LIFE.

A life, that as flexible as it is, has a hard time accommodating the ONE THING ONLY limitation.

A life that can't wait forever. Involving people who depend on me. And a small business.

I need to parent, to cook, to clean, to work and, apparently, I can pick just one of those a day. I have not cleaned anything in 6 days. I haven't cooked since I was taking 10mg of prednisone daily--I'm actually throwing out food. Exercise is almost 9 days gone.

I am seriously going to miss some work deadlines at this point--I am too tired to turn out quality work right now and am behind as a result--on top of being behind when I was sick before. With tutoring, I've already lost one student. I still may have to give up the other.

Being self-employed means I don't get FMLA or disability or paid vacation time. I either work or I lose income.

I need the energy to be productive.

I want to call and say this to the pulmonologist on Monday. It seems extreme to me that I am so incapacitated. I'm all for powering through and goodness knows I hate prednisone,but right now I'm losing more ground than I ever gained. I'm going backwards in material ways and it needs to stop.

Having asthma was better. I knew I should've just stayed home.

I tried it her way and, who knows, perhaps without the stomach flu, it may have been okay. But I am not okay now and I do not see positive change other than the muscle pain has calmed down. Even that is only a partial victory as I still have painful spasms any time I stretch or extend a limb--enough to keep me up at night.

Hopefully this weekend will bring about a miracle, but, if not, come Monday I'm going to have to become much more assertive about what's going on.

Which hahahaha, the joke's on me. If I can't hack a trip to the mall, how am I going to show up for blood work? That should be interesting.

Stepping Out & Falling Flat on My Face

The weather is beautiful. Warm finally instead of snappy Spring cold. Sick and tired of being trapped in the house, with a toddler who felt similarly, I decided an outing was in order.

The pain has improved. I'm so happy to not be French kissing the toilet any more that I feel pretty good. Falsely so as it turns out.

First we went to Borders and bought a bunch of books for the toddler as well as a birthday gift for someone else. The toddler was age appropriate in her behavior--distract-able, mostly not listening, but responsive to coaxing and some bribery.

That ended when we went to the mall.

I explained the agenda to her, store, train ride, potty, home.

She repeated it back to me.

I thought we were good.

We were not.

She began channeling Linda Blair the second we set foot in the mall.

Coaxing didn't work.

Bribing didn't work.

Things deteriorated into momma (that would be me) saying things like "You can walk or I'll help you walk, those are your choices."

Of course the toddler choose being 'walked' by momma, which involves me holding her arms and hustling her along. She thought it was great fun and laughed the whole time.

I did carry her for as long as I could at one point, but am not strong enough still to manage 500+ yards with her in my arms. A key point to keep in mind any time I start feeling ambitious in the future.

Then she started screaming 'ow' and favoring her arm. I stopped, I looked her over, couldn't find a problem and decided whatever it was we would deal with it later. I hadn't touched her arm other than the 'walking', which had occurred 5 minutes previously with no comment. But she's not a faker that I've ever seen so something must be wrong.

The parking lot was a similar exercise in parental misery. Proving that no matter how old I get, I will never have enough wisdom to where a mere 2-year-old can't run circles around me.

We did the awkward hold-my-hand-damn-it-and-stop-practicing-passive-resistance-as-if-MLK-is-watching dance, which resulted in skinned knees when the toddler went limp. So the toddler was crying. I couldn't carry her. People were staring. I felt like crawling into a hole alternated with the urge to shout 'I am not a bad mom, she's a bad toddler.' Which would be immature so I didn't do it, but it was tempting.

Spanking was starting to sound like a Great Idea. See also, when selling one's children on Ebay sounds Real Good. And also, Where's Mary Poppins when you need her, the flaky bitch?

I have never been so happy to be home in my life. The toddler's arm is fine, thankfully--I don't know what that was about. The knees, well, she got some boo-boo kisses and a looooong talk about how if we cooperate and hold hands, we don't fall and hurt our knees. Non-violent protest is not all it's cracked up to be.

Further, she was informed, we will not be going anywhere any time soon. At least not until I can cover 1/8th of a mile while carrying her. Or she turns 35. Whichever comes first.

Before running the parental gauntlet, I felt pretty good and was optimistic that I was going to be fine. After, I'm beyond wiped and am clearly not 100%. So we are back to where sitting on my ass is easy and makes Doing Things sound good, when I'm really in no position to do anything other than imitate a couch potato.

Feeling the Pulse, Missing the Diagnosis (How Paris Tried to Kill Me V. 2.0)

As I mentioned, previously, my vacation to Paris was quite virulent. I came back incredibly ill on multiple fronts. The one I've blogged about before was the bad asthma flare.

Well there was another problem (because apparently I can't just have one). This one sent me shopping for support hose in Eastern Europe (where we visited the hubby's family and then returned to Paris).

Something in my leg started whipping around like Indiana Jones' bull whip. It was very bothersome. Whenever we bought internet access at the various hotels, I would Google madly trying to figure out what it was.

Between Google and my basic medical background, the only thing that made sense was a circulation problem of some kind. I knew enough anatomy and had enough experience as a massage therapist to rule out a muscle issue. It had to be a vein. Or the aliens. Either way.

So off we went in search of support hose. Funnily enough, my hubby, a native speaker, didn't know the word for women's support hose in his language but we managed somehow. Not the kind of vacation shopping I had planned on, but amusing nonetheless, in its own way.

The support hose didn't do much and increasingly worried about a blood clot, I started taking aspirin. The flight home, I spent with my leg up on the hubby's lap and taking lots of walks around the cabin. Why I didn't seek medical care in Europe, I don't remember. Oddly enough we even consulted with various doctors while in Europe as we considered doing IVF there, so it's not like I couldn't have said something.

When I went to see my PCP stateside, she felt the pulses in my leg and pronounced me 'fine'.

Bullshit. I mean, I respected and liked this PCP, but no, things were not 'fine.' And you know how much I like living in 'I'll be fiiiine land.'

I tried to ignore it, to be reassured by my PCP, but it would thrash in my leg like a headbanger in a mosh pit. I couldn't let it go.

From there I found a vein doctor and discovered my greater saphenous vein had bit the big one. So I had a vein ablation.

The vein doctor was a) OMG hawt b)beyond kind c) told me this happens sometimes and didn't necessarily mean a blood clot.

Another doctor told me it could've been a blood clot but refused to do any testing for clotting factors. Another doctor also refused to do the testing for clotting factors, which I always thought was weird. I have PCOS, it's not outside the realm of possibility--about 1/2 the infertiles end up shooting up Lovenox.

Anyway, the vein ablation successfully resolved the issue, but here again, another missed diagnosis. Let's see, how many does that make?

1. Asthma--took 3 years to get initial diagnosis, doctors still argue with me about it to this day.

2.Cushings followed by adrenal suppression--missed the first time, I had to strongly advocate for testing the second time, doctors don't believe me to this day (although now I have a copy of the blood work which should shut them up).

3.PCOS missed for 10 years (although to be fair, I think it took a while for science to catch up to where I was as a patient).

4.Collapse of greater saphenous vein

Will the wonders of modern medicine never cease?

What I Wish Doctors Had Told Me About Steroid Withdrawal

1.That it happens. I know I'm behind the times. I seriously did not Google asthma hardly ever because it was a non-issue. My meds worked. I hadn't had a serious flare up in a long time, so who cared? Well, here I am finding out everything I never knew about asthma and prednisone.

It would've been nice to hear this from my doctor.

Of course, I have a sneaking suspicion that not many asthmatics have this kind of withdrawal. The 5 day burst is so common, how many asthma patients really end up taking prednisone for 30+ days and how many of those go on to have serious withdrawal symptoms?

My guess is not many simply because I'm treated like an over-functioning worrywart whenever I bring up any concerns, but I'm not over-functioning. Prednisone does weird shit to me. Maybe I wouldn't so hyper about it if someone would actually listen to what I was saying and look at how I went through a year of adrenal suppression with just medium term Prednisone use--similar to this latest episode.

I. am. not. making. this. up. There is a medical history there. Look at it. Please let's not repeat it.

2.What to do about it. I would've appreciated instructions on how to manage the pain and side effects. I don't like guessing or making things up on my own. Some self-care/home-care instructions would've been a huge help. Please tell me how to help myself--if I have a plan, I'm less likely to call and interrupt your day.

3.When is it an emergency? It would've been nice to have a run down of what constitutes an emergency during steroid withdrawal. Also, it may have made my ER trip a bit easier if I'd been aware of steroid withdrawal and been able to communicate that to the ER. I mean, I did ask about the steroids, however, with just a bit more information, I could've not only connected the dots myself, but helped them connect it all as well. Maybe I could've avoided the ER altogether.

4.What to do if I get sick. Everything I've read indicates additional steroids may be necessary during illness. I can see why--the stomach flu was brutal. Please tell me what to do. Should I call you when I get sick? At what point? Please tell me how we're going to work together to manage this.

5.Tell me the asthma can flare up during withdrawal and how you want me to manage it. This was really worrisome for me until I realized it was normal. Typically, I have a 5 day burst of prednisone on hand at all times to use at my discretion during flare ups, imagine if I had started that?

I would have been totally justified doing a 5 day burst too, as peak flows have dropped into the 350 range, which is baaaaad.

So don't leave me to my own devices, I might do something stupid. The asthma action plan has to be modified for the withdrawal period so oral steroids are avoided while also controlling flare up symptoms. I need you to tell me how we're going to manage this.

6.Tell me I may not feel well and may need more rest. Backsliding and going from lots of exercise and normal activity to zero was frightening. I lost all the ground I had gained and am now starting over. Again. This sucks. A heads up would've been nice, not to mention a kindness.

Right now I'm upset. I feel as if I was left to flounder and muddle through without any guidance.

Not cool.

Doctors don't like patients who Google, but, all too often, the patients have no other choice. It's not like their doctors are giving them good information.

What a Difference a Sleepless Night Makes

So after the whining of yesterday, I seem to have turned the corner. I was up until about 3am with sustained muscle spasms that wouldn't let me sleep.

After that, everything relaxed. The pain finally improved, but sleep was restless and elusive. I took more Tylenol alternated with Advil throughout the night

I did 2 doses of calcium, magnesium and potassium within four hours of each other before going to bed, which helped. Drank 3 liters of water and some Gatorade (which blech. Anyone remember when Gatorade used to taste good? Now it's like drinking candy. Totally upset my stomach too.).

I also increased the Pulmicort which was my only option aside from breaking out the nebulizer or going back on prednisone, which is not desirable. On top of that, I took some anti-histamines right before turning in.

My understanding is steroid withdrawal can cause quite a bit of inflammation so I like to think the anti-histamines were helpful since the Tylenol/Advil rotation alone was not working. It seemed to be the most asthma free night I've had in a while. No rescue inhaler yet today so that is progress.

Perhaps this is the last of it?

Unsettled

I am dithering about calling the pulmonologist tomorrow. I got the distinct impression from our last conversation that my job is to 'power through.'

Enter the stomach flu.

Whereupon things have regressed.

I stand up. Then promptly sit down as I get dizzy and the world goes gray.

Do a full body stretch and I get a charley horse that extends from my neck down through my hamstrings. I'm afraid to laugh. It hurts.

Advil alternated with Tylenol is not killing the muscle pain.

Because of the blood pressure machine, I know my BP is 90/60 with a heart rate of 110.

I'm wheezing enough that sleep quality is poor, I wake up more tired than I started.

In the kitchen, I find myself at the dishwasher when the goal was to open the freezer. Almost throwing out the chicken instead of putting it in the fridge. Small mental hiccups that make me nervous about how well I'm really doing.

Some of this could be dehydration and I haven't been taking the usual repertoire of vitamins, which would, I assume, help balance my electrolytes, which, I also assume, are out of whack from the stomach flu. I am working on correcting this--my vitamin habit is earning its keep. I also missed some doses of regular meds, which is probably feeding the asthma. I'm drinking water too and some Gatorade.

Plus, I guess I need even more sugar? Because the chocolate ice cream I found hidden in the freezer (by the hubby) is helping more than I thought it would. I feel like all I've done is eat simple carbs all. day. long. When is it going to be enough? I would like to get back to low carbing asap.

What pushes my worry over the edge are the mental lapses. That is not me. I don't forget what I'm doing/where I'm going, not like that.

Maybe tomorrow will be a better day. I've made it this far, right? If the stomach flu in full throttle couldn't pull me under, the aftermath can't do any more damage.

Right?

Someone say yes. Please.

PS: Blogger is being a bonehead and I don't know what happened to those other posts. I guess I should know better than to make any promises.

Forget Waterboarding

What they really should've done at Guantanamo Bay was give everyone prednisone, then taken them off prednisone and just when the steroid withdrawal was at its peak, infected them with the stomach flu.

We would've found Bin Laden within days.

If they wanted to find Laden sooner, add in an infant who never sleeps or a very active toddler in a room with a broken baby gate.

Waterborading. Pffft. That's for sissies.

I'm alive (and wheezing unfortunately). Inordinately sore thanks to prednisone's effect on the muscles. Living on Sprite, crackers and today adding kefir--amazingly I have to have the carbs or the blood sugar tanks in a no good, very bad way--I am not used to this.

Taking bets on when this will hit the poor toddler--anyone want to guess? I was about 36-48 hours behind the hubby. So that puts the toddler at Thursday or Friday, but she was also licking my Sprite bottle while I was urmmm 'otherwise occupied', so we swapped spit.

I do have some posts written up that I'll set to publish so the blog doesn't go dead.