Snapshot

Before I start in on where I am going there are some things that I want to get out first. I wanted to post this earlier this month, but here it is now. This is for anyone who is interested who is already reading this blog. It is also for anyone out there searching for blogs with medical conditions that they share. But it’s more than sharing conditions; knowing that you aren’t the only one with the problems you have helps – at least it helps me.

I apologize for the length of this post, but I want everything visible so anyone who finds this won't have to click through a link to find the information.

For the sake of people searching I will once again say that I had Legionnaires’ Disease, Acute Respiratory Distress Syndrome (ARDS), sepsis, was intubated and on a ventilator for 6½ weeks, in the ICU, suffered multiple organ failure (I think they call this MODS), was on dialysis, my heart stopped, I had multiple infections and I almost died.

So, before I move on to where I want to be, here is where I am at now.

I have a brain injury and related cognitive issues, nerve damage, persistent muscle weakness, scarred lungs, asthma, COPD and PTSD.

Specifically, I have:

• Pain in my right hand and left leg from nerve damage
• Overall weakness from muscle atrophy and persistent weakness
• Inability to stand or even sit up unsupported for very long
• Lack of stamina
• Severe fatigue, as in any exertion and I just hit a wall. It’s a deep exhaustion where the chemicals to move your muscles are depleted
• Burning pain that runs from my left hip down into my foot
• Difficulty focusing and concentrating on tasks and an inability to multi-task
• Difficulty handling stimuli – if I go out, such as to a store, where there are many, many stimuli, like a supermarket, I am quickly fatigued both mentally and physically
• If I watch people while they are talking I will lose track of what they are saying because I get distracted by their mouths and eyes – which can make it look like I am not paying attention or trying to lie when all I am trying to do is hear the actual words and not just the sounds
• Memory problems: as in I’m not sure what I remember from the past and I have short term memory problems. I have trouble remembering the right word and sometimes use the wrong word. Also, if I am looking at or listening to something while trying to talk I may say what I see or hear instead of what I mean to say.
• Some hearing loss, both volume as well as frequency – I thought this was from sepsis but apparently the myriad antibiotics I was on could also be the cause; just another example of the cure causing problems. No complaints; they did it all to save my life.
• Vision problems that includes nerve damage around the eyes, eye fatigue and pain
• Ringing in my ears
• Shortness of breath, sometimes when I’m just sitting down
• Difficulty sleeping – both falling asleep and staying asleep
• Crazy-ass and often disturbing dreams
• Depression
• Anger management issues
• Overall nerve damage

The nerve damage includes, top to bottom:

• around my eyes, which affects muscle control
• around my ears
• around my nose, which also affects muscle control
• my neck – my head tends to fall to the side, especially to the left, when I am tired
• Throat and Larynx – my voice is not the same as it used to be, which means that not only do I not sound the same, but I can’t sing like I used to and sometimes I can’t laugh. The not laughing may be the worst part of it.

  I also have an odd sensation in my throat. An exam by an ENT (I’ll post about that some other time) showed no visible physical damage so it is the nerves.

• Numbness in my right forearm
• Ulnar nerve damage that means that I can’t use half of my hand properly, or even feel it. Numbness and tingling don’t really properly explain this sensation.

  Imagine that you are wearing half of a glove that cuts off sensation and restricts movement to three fingers and limits the use of the other finger and thumb. You feel like you should be able to take it off, but you can’t. I can’t use the hand like a hand, even though it looks pretty normal.

• My right hand is also a major pain location. The damaged nerves, including the nerves in the hand itself, are not responsive to normal sensation but give an amazingly increased pain response, sometimes just out of the blue in excruciating fashion. Meds for this only reduce it some, and if I take enough to do that I get sedated into immobility. So there is pain all the time and using the hand (writing, typing, eating, stirring, gripping) just makes it much worse. When I get the sudden electric-shock pain I get what I call the Dr. Strangelove effect: my muscles cramp, starting at my fingertips and running up my arm, so that my hand curls up and my arm follows and it jerks up till my hand is by my shoulder.
• In my left hand it’s mostly just the little finger
• On my left thigh there is a large area of loss of sensation. This is also a major pain location. There is pain all the time and using the leg (standing, walking) makes it much worse. Of course, sometimes when I’m just sitting there I get a lightning pain, as if someone stuck an electrified spike – or multiple spikes – into my leg. This can make me fall down.
• There are also some internal problems with my digestive tract and I’ll just leave it at that.
• Nerve damage in both ankles that affects balance
• Both feet, the outside three toes mostly, bottom and top of foot around them as well, which is a pain location as well as a problem walking and balancing

Also:
I sometimes have trouble completing tasks because I will miss a step or two even when I have written directions.

Overall loss of muscle, my current muscle mass is at most half of what it was by my perception. I lost 60 lbs while in the ICU and very little was fat. I am much weaker than I was before. What muscle I do have is not as strong as it used to be. The exercise that I have been able to do, which most days is limited to activity to take care of myself because of my lack of energy, has not put on much muscle. I am stronger than I was 3 years ago, but I am still very weak. I have no stamina.

My recovery time from exertion is long; it can take days to recover if I go too far. I test my limits all the time, and I can sometimes tell when I should stop. Of course there are times when I just have to go on, like when I need to go to a doctor or just take care of daily chores. Afterwards I collapse.

I have asthma and COPD; I have scarring from the disease and the intubation.

I have been told by pulmonologists that additional oxygen will not help (and would actually hurt) because I am using as much as I can.

I have PTSD.

I have anger issues, the stupidest thing can set me off. I perceive things as threats or challenges to me and my abilities when they may not be, and probably aren't. It’s like the fight or flight response is now just fight even when there is no real threat. I can’t run away from what is wrong with me so I just get angry about everything.

I have trouble talking and eating because the long intubation moved my teeth out of alignment.

I also have high blood pressure and a stress ulcer, both only since being in the hospital.

I still have some more tests to go to check out my blood chemistry and look for brain lesions (oh joy).

There is a lot more to do, and I’m not stopping. This is just to let people know where I am now. I'll let you know where I’m going and how I’m getting there in future posts.