Friday, October 27, 2017

Slow innards...


The neuropathy in my arms and hands continues, which has made just about everything impossible.  Okay, not impossible, but definitely difficult.  Typing and using the touch pad and using my phone ... I jerk and jerk and jerk and end up with a colossal amount of mistakes.  SIGH.  Plus, well, it just drives me nuts to be continuously shocked.  I cannot tell if the shocks are slightly less or if I am growing used to them.  SIGH.

The visit with the cardiologist was ... interesting.  He is super, super patient with me and answered my gazillion questions, some of them several times until I could understand.  Some of the answers, I understood, but I just cannot repeat.  One of them made sense ... maybe my oxygen sats are not as low as my pulseoximeter, because maybe the capillaries in my fingertips have shut down because of a reaction to the exertion.  He doesn't know that, but it could be an answer.  The thing is, we just don't have enough answers.

I started experiencing a new symptom that I am calling breathlessness.  All of a sudden, it feels like there isn't enough oxygen in the air anymore.  Like I am breathing another gas or something.  Usually, it passes quickly, but it is rather disconcerting.  My cardiologist thinks the shortness of breath with exertion and the breathlessness are connected.  I think he thinks that it is lungs not heart, but I wasn't quite straight on that.

The doughy swelling in my legs at night, he suspects my be because of the valves in the veins in my legs, so I am having a test for that in December.  I brought him a photo from Tuesday night, because the elephantine size of my legs, ankles, and feet scared me.  My right is worse than my left.  I just don't look at my feet much.  But when I did I gasped.  I was really, really, really grateful that I only had two days left until my cardiology appointment.

As far as the breathing, the pulmonary function tests say two things:  1) I had good results for having asthma.  Great results, even.  2) They show a restriction and something else I just don't understand that has to do with diffusion.  I'm not taking in enough of a breath is the restriction part.  Is it Sjögren's?  Is it the weight gain?  Is it asthma?  Is it dysautonomia?

I think I got that he thinks it might be reactive, which could mean dysautonomia and thus harder to pinpoint and maybe treat.

I mentioned to him that the integrative medicine specialist asked why I am no longer on the theophylline since it helped my asthma so much.  I told him that I told her that I didn't think that I could go back on it.  His response was interesting in that he did not agree with that.  Maybe I could.  Or maybe we needed to attack this from a non-traditional direction.

I practically didn't have asthma any more on theophylline.  So, I'm up for that, if there was a way to control the wild reactions I had in my blood pressure and heart rate at times.  Also, frankly, theophylline would be cheaper treatment for me.  Well, cheaper in that I wouldn't be on traditional meds.  But I would be paying for it, whereas I do not now being on medication assistance programs from the manufacturer.

One of the highlights of my visit was when I shared my FitBit data about the increase and subsequent decrease in my resting heart rate.  I know doctors can be dismissive of Fitbit, but I thought the graph could help show this rise of heart rate overall.  Low and behold, the pacemaker data showed the same thing!  Fitbit shows the peak October 8th, but it was really the 10th.  And it shows a greater intensity in increase a week around that date.

With dyautonomia, you generally get a whole lot of normal test results, save for the tilt table test.  So, you get a whole lot of "crazy" diagnoses.  "Psychosomatic" comes up a lot.  The way I like to describe it is that those tests are often looking at the organ and not the nerves controlling it.  And it is the nerves that are the problem.  Nerves a whole lot of medical personnel forget about, ignore, and even dismiss as real.  SIGH.

With Sjögren's, I am getting abnormal results, which is a bit of a relief.  Only the syndrome is unnerving and makes life ever so difficult.  It is unfamiliar and difficult to manage.  I hate it already and my diagnosis is not even a year old.  SIGH.

So, back to the breathing issues.  My cardiologist wants me to do a cardiopulmonary stress tests, which takes place on a bike.  First, that is a problem because of the pudendal neuralgia.  But I will sit for that.  Second, biking is just not that stressful to me.  It is not the effort that standing and walking is.  I am just not sure we can get the data he wants on a bike.

My idea was to go home and do a session on my recumbent bike to see if my oxygen sats drops.  I tried different settings, mostly because I figured I would need to be able to sustain the biking.  At the middle tension and 12.5 miles an hour, I got my heart rate to the 120s, but my sats only dropped to 92.  I do not think that that is enough stress.  I sent him the data, per his request.  So, I am waiting to hear back from him.

In sum, I was reminded that I am incredibly blessed by the care of my cardiologist.  He is very, very knowledgeable about dysautonomia and is the paragon of patience.  I am trying to get better at being the patient of a male doctor.  SIGH.

Thursday night, I had dinner with my realtor after my cardiology appointment.  Unfortunately, after that my stomach stopped working.  Another gastroparesis flare.  It's been a while since the writhing has been this bad.  Here I am, more than 24 hours later, and that dinner is still sitting there.  Such misery.

It's been a long, long few weeks for me.  Many appointments and yet no real answers.  I very much dislike breathing issues, for they deeply frighten me.  Swallowing.  Breathing.  Chest pains.  The symptoms that strike the deepest fear within me.

More blood work on Monday.
I don't do mornings well.

If only my stomach would start working again.  Slow innards ... UGH.

No comments: