life-throws-curveballs

It has been one of those days/weeks/months when too many curve balls have been slung at me. The bad list:

Thursday Olive chewed through my computer cord…again. I let down my guard and bam!

Today I discovered Olive chewed into the lamp electric cord so many times that it’s holey and ruined. I am glad I noticed before turning it on! Why isn’t she electrocuted? Apparently she has beaten the odds so far  😮 This is new behavior!

OMG!!! I just checked many of the cords. She laid bare the extension cord for the fan, too. I threw out the lamp and extension cord. Sigh…

I got confirmation that my hernia can not be repaired.

I found out that angioedema is a much worse disease than i thought it was…and that many of my medical problems involved angioedema.

The rent went up to 75% of my income.

I am still too weak and in pain to do my laundry 😦

The sleep center called to give me the results of my overnight oximetry. I was bad. I stay at 5 liters for now.

There’s something strange wrong with me. I don’t know what it is yet. I sent an email to the CNP’s nurse this morning. He said they already have the blood test results, but the CNP hadn’t reviewed them. I waited all day for an email or call. Nothing. The pain is wicked bad intense. I left a message that since I have not heard back, I am going to start my meds. I downed 6 Medrols from the dose pack and a plaquenil.

And there’s a whole bunch of private, mental angst is woven through everything..

The good list:

GoogleTubing

Today I found out that this building is being wired for Google. I already assumed that since the orange tubes are sticking up, ready to be connected to the building, but today the manager told me it’s for sure.

I am supposedly going to get a new and more functional wheelchair.

IgM

Structure of the pentameric IgM: 1. Base unit, 2. Heavy chains, 3. Light chains, 4. J chain, 5. Intermolecular disulfide bonds.

I discovered a better way to search for info about low IgM. The code for it is under Selective deficiency of immunoglobulin M [IgM]. I have become real curious about my deficiency of IgM ever since my insurance company decided to give it the (HCC) designation. That’s Hierarchical Condition Category (HCC) coding. By having this coding on 4 of my diagnoses, doctors and hospitals get a higher rate of reimbursement when I get treatment. I am still trying to grasp how they picked out these 4 out of the 33 diagnoses from the major hospital/doc group I see.

Myasthenia gravis (HCC)

Diabetic neuropathy (HCC)

COPD (chronic obstructive pulmonary disease) (HCC)

Decreased Immunoglobulin M (HCC)

I am thinking they get to lump many of my problems under the umbrella of these 4 categories….especially the low IgM. That can be for every one of my infections and autoimmune issues.

What is incredibly ironic about the MG and neuropathy HCC designations is that the idiot neuro I first saw in Utah, vehemently denied I had those diagnoses. And when it comes to selective deficiency of immunoglobulin M, the immunologist said there was nothing to be done about it, he knew very little about it and he downplayed the diagnosis. COPD is a diagnosis I have had for decades. I suppose that is what my supplemental oxygen is covered under. That’s expensive.

Another very, very ironic thing is that IVIg is used to treat MG, angioedema, IgM deficiency and some of my other autoimmune diseases….yet Utah does everything possible to make sure I do not get it. It’s handy for them to put HCC after those diagnoses without spending any more than they can get away with.

I went to bed at 7 PM Thursday night. I felt physically and emotionally beat up. I was rudely awoken at 3 AM when the power went off, so the CPAP and oxygen concentrator quit. The o2 concentrator lets off a piercing screech. That gets my heart pounding. Well….my chest hurt so bad that it went down the front seam of my ribs and right through to my spine. It was too painful to stay in bed. Soooooo, here I sit, trying to occupy my mind to try to ignore the pain. My arm got on the bandwagon.

The swelling of my underarm lymph nodes keeps getting better and worse over time. When swelling goes down, I am surprised at how deep the pit in my armpit really is. The whole thing induces waves of queasiness. The worst thing is that when some of the lymph nodes drain, others swell up even more.

Huh…an article about MG popped up on my FB feed. Glad I didn’t miss it.  Rare Insight: A Physician’s Perspective on Myasthenia Gravis

There’s a lot on my mind. I am feeling knocked about by the bad list. Here’s hoping I can add some things to my good list!

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