Hey everyone.. I have returned. Back around the beginning of the year I kind of disappeared for a bit. It all started in the second part of last year when I was getting bothered by the skin on my chest itching. It felt like a sunburn feels when it's healing. Well, that went on for a while and I went to a dermatologist. She treated it as if it were a fungal infection of some sort, but to no avail. SO, we did some blood work... Well, she called me back and told me there was a problem with my ANA count (Anti-Nuclear-Antibodies). The normal titer is <200 and mine was somewhere around 2200. She said that pointed to some type of an auto-immune problem and said I needed to see a rheumatologist, as this is what they do... Meanwhile my skin still itches.
I go to the rheumatologist, and he examines me and does further blood tests. He noted that my liver enzymes were mildly elevated (very mildly) and because of a correlation he saw in the past.. He wanted to check my CK levels (an enzyme caused by muscular damage/deterioration) which can show up as elevated AST and ALT.... normal CK is around 200, mine was nearly 800.Getting warmer... So on with more tests.. Basically he tested me for a variety of auto-immune related things like lupus, rheumatoid arthritis, etc.. They took about 9 vials of blood for this round. The blood tests all come back negative, but one showed the presence of 2 antibodies that shouldn't be there. One was called AntiRNA Polymerase III, and the other was called Anti-MI2 .. At that point we knew what the culprit was... A combination of diseases, Dermatomyositis and Diffuse Scleroderma (Systemic Sclerosis). They are basically what are considered connective tissue disorders by definition can affect skin, cartilage, and internal organs including the heart and lungs (this is important later). Meanwhile, my skin still itched.
So, it was confirmed by a battery of tests... CT Scans (with and without contrast) Hi Res CT scans, X-Ray, Electromyogram. All of these pointed to the condition(s) but none of these tests are truly diagnostic. Skin biopsy confirmed and the diagnosis was made (and my skin still itched).... SO, now we had to find out what it was going to do because apparently I have had this issue for years but it just now decided to present itself. Well, during more testing we did some CT scans, X-rays, etc... Well, the good news is the doctor said my lungs looked great with regard to damage caused by smoking all those years. BUT ... There was some evidence of inflammation so he wanted to do some thorough pulmonary tests.
So off to a pulmonary specialist I went (told you it was important).... It was there that we discovered my lungs were heavily affected by this disease, even though I really didn't notice it. I had always attributed my shortness of breath to my former smoking habits but that wasn't the case apparently. My lung capacity is about 50% of what it should be according to these tests. My oxygen levels are low as a result. So the goal at that point was to find out how bad the inflammation was, and if it was progressing to scarring of the lungs (pulmonary fibrosis). At this point, I'm getting kind of creeped out AND... my skin still itched.
Next course of action: Open lung biopsy... Yay me! So that happened... Luckily, the scarring wasn't bad, and apparently the pattern of scarring they were worried about wasn't present. There are variations, some of which are terminal within as little as 2 years. Luckily that wasn't me... But I did stop vaping because I wanted to make sure that wasn't making my problems worse. I then began a variety of treatments to basically kill and restart my immune system since basically it was my own immune system attacking healthy cells. Immuno-suppressant drugs (a few different kinds), steroids, and even chemo-therapy for about 4 months. Over time the blood tests improved, but the jury is still out on the lungs. The scarring cannot be reversed nor can that capacity be recovered, but some can and the best thing is I have gotten no worse. I had told the doctor about vaping and he said he didn't think it was hurting me, but objectively reminded me that lungs are meant for breathing air. He did say that considering the alternative (smoking), he didn't have a huge issue with it.
So yeah.. that was the first half of 2016 for me... (Oh yeah, my skin still f*cking itches!)
(Refill your tanks/drippers now...)
So then the summer came along... and the whole Alton Sterling event, and the attacks police officers in Baton Rouge (one of which I used to hang out with) happened. Terrible time; felt like the city I grew up in and loved was slowing dying. But like people do around here, they managed as best they could and got by. Eventually things quietened down and got back to somewhat normal.
August 11th. It starts raining... Alot. More than I have ever seen and I have lived here all my life with hurricanes, storms, etc.. simply put, where I live this was an epic rainfall event. Biblical even. On Friday August 12th, we had 17" of rain between midnight and 3pm. The next 24 hours beyond that brought over 10+ more inches. So in roughly 36 hours, we had 27"+ of rain... It was impressive... Until the river started rising.
Saturday August 13th, I woke up and made coffee. Noticed that the water in the streets from the day before had backed off a bit. Figured that we had seen the worst of it.... I was mistaken. I left my house to go run an errand and my boss asked me to turn off the power at the plant I work at, incase of high water. When I left my neighborhood I realized we were in for it. I literally couldn't get a half mile to work because there was more than 4' of water about 1/4th mile from my house, and closing in. So I went back home... then I noticed the water in the streets was creeping back up, and at a pace I could actually see it rising. By this time, people are showing up at my house because they had lost everything... some were soaking wet with plastic bags containing the last of their belongings. Some I didn't even know; they were just people that got picked up along the way. I mean, you cant just tell some little old lady "Sorry, no room here"... so I told everyone to come in, get dry and I would cook. I BBQ'd for hours and watched the water creep up all day.
Finally about 8pm, the water came into my house. Luckily we only got about 2' of water and we managed to keep power, A/C, etc.. also we had a second floor to retreat to. The bottom of the house was ruined, we lost 4 cars and countless other items. Still, we were very fortunate.. Many people in my neighborhood were not. Some took water to their roof line and above. The next 2 days consisted of countless airboats and fishing boats riding up and down my street (which looked like the river) rescuing people. But the water finally left the following Monday and the cleanup began. It was then that I found out that literally 93% of the buildings in my town took water and flooded. Next door in Baton Rouge, over 60% of the houses/businesses there flooded, and we're talking areas that have never flooded in recorded history. The river crested higher than it had ever done before (46.2 feet, "flood stage" for low lying areas is 29 feet). The highest ever recorded previously was 41 feet in 1983. My job went under, my wife's jobs went under, and now we're doing the flood insurance thing (I was fortunate I had it) and that's where we are. So I picked up the vape again... Had to.
And my skin. still. itches.
Anyway, thanks for reading. Glad to be back.
I go to the rheumatologist, and he examines me and does further blood tests. He noted that my liver enzymes were mildly elevated (very mildly) and because of a correlation he saw in the past.. He wanted to check my CK levels (an enzyme caused by muscular damage/deterioration) which can show up as elevated AST and ALT.... normal CK is around 200, mine was nearly 800.Getting warmer... So on with more tests.. Basically he tested me for a variety of auto-immune related things like lupus, rheumatoid arthritis, etc.. They took about 9 vials of blood for this round. The blood tests all come back negative, but one showed the presence of 2 antibodies that shouldn't be there. One was called AntiRNA Polymerase III, and the other was called Anti-MI2 .. At that point we knew what the culprit was... A combination of diseases, Dermatomyositis and Diffuse Scleroderma (Systemic Sclerosis). They are basically what are considered connective tissue disorders by definition can affect skin, cartilage, and internal organs including the heart and lungs (this is important later). Meanwhile, my skin still itched.
So, it was confirmed by a battery of tests... CT Scans (with and without contrast) Hi Res CT scans, X-Ray, Electromyogram. All of these pointed to the condition(s) but none of these tests are truly diagnostic. Skin biopsy confirmed and the diagnosis was made (and my skin still itched).... SO, now we had to find out what it was going to do because apparently I have had this issue for years but it just now decided to present itself. Well, during more testing we did some CT scans, X-rays, etc... Well, the good news is the doctor said my lungs looked great with regard to damage caused by smoking all those years. BUT ... There was some evidence of inflammation so he wanted to do some thorough pulmonary tests.
So off to a pulmonary specialist I went (told you it was important).... It was there that we discovered my lungs were heavily affected by this disease, even though I really didn't notice it. I had always attributed my shortness of breath to my former smoking habits but that wasn't the case apparently. My lung capacity is about 50% of what it should be according to these tests. My oxygen levels are low as a result. So the goal at that point was to find out how bad the inflammation was, and if it was progressing to scarring of the lungs (pulmonary fibrosis). At this point, I'm getting kind of creeped out AND... my skin still itched.
Next course of action: Open lung biopsy... Yay me! So that happened... Luckily, the scarring wasn't bad, and apparently the pattern of scarring they were worried about wasn't present. There are variations, some of which are terminal within as little as 2 years. Luckily that wasn't me... But I did stop vaping because I wanted to make sure that wasn't making my problems worse. I then began a variety of treatments to basically kill and restart my immune system since basically it was my own immune system attacking healthy cells. Immuno-suppressant drugs (a few different kinds), steroids, and even chemo-therapy for about 4 months. Over time the blood tests improved, but the jury is still out on the lungs. The scarring cannot be reversed nor can that capacity be recovered, but some can and the best thing is I have gotten no worse. I had told the doctor about vaping and he said he didn't think it was hurting me, but objectively reminded me that lungs are meant for breathing air. He did say that considering the alternative (smoking), he didn't have a huge issue with it.
So yeah.. that was the first half of 2016 for me... (Oh yeah, my skin still f*cking itches!)
(Refill your tanks/drippers now...)
So then the summer came along... and the whole Alton Sterling event, and the attacks police officers in Baton Rouge (one of which I used to hang out with) happened. Terrible time; felt like the city I grew up in and loved was slowing dying. But like people do around here, they managed as best they could and got by. Eventually things quietened down and got back to somewhat normal.
August 11th. It starts raining... Alot. More than I have ever seen and I have lived here all my life with hurricanes, storms, etc.. simply put, where I live this was an epic rainfall event. Biblical even. On Friday August 12th, we had 17" of rain between midnight and 3pm. The next 24 hours beyond that brought over 10+ more inches. So in roughly 36 hours, we had 27"+ of rain... It was impressive... Until the river started rising.
Saturday August 13th, I woke up and made coffee. Noticed that the water in the streets from the day before had backed off a bit. Figured that we had seen the worst of it.... I was mistaken. I left my house to go run an errand and my boss asked me to turn off the power at the plant I work at, incase of high water. When I left my neighborhood I realized we were in for it. I literally couldn't get a half mile to work because there was more than 4' of water about 1/4th mile from my house, and closing in. So I went back home... then I noticed the water in the streets was creeping back up, and at a pace I could actually see it rising. By this time, people are showing up at my house because they had lost everything... some were soaking wet with plastic bags containing the last of their belongings. Some I didn't even know; they were just people that got picked up along the way. I mean, you cant just tell some little old lady "Sorry, no room here"... so I told everyone to come in, get dry and I would cook. I BBQ'd for hours and watched the water creep up all day.
Finally about 8pm, the water came into my house. Luckily we only got about 2' of water and we managed to keep power, A/C, etc.. also we had a second floor to retreat to. The bottom of the house was ruined, we lost 4 cars and countless other items. Still, we were very fortunate.. Many people in my neighborhood were not. Some took water to their roof line and above. The next 2 days consisted of countless airboats and fishing boats riding up and down my street (which looked like the river) rescuing people. But the water finally left the following Monday and the cleanup began. It was then that I found out that literally 93% of the buildings in my town took water and flooded. Next door in Baton Rouge, over 60% of the houses/businesses there flooded, and we're talking areas that have never flooded in recorded history. The river crested higher than it had ever done before (46.2 feet, "flood stage" for low lying areas is 29 feet). The highest ever recorded previously was 41 feet in 1983. My job went under, my wife's jobs went under, and now we're doing the flood insurance thing (I was fortunate I had it) and that's where we are. So I picked up the vape again... Had to.
And my skin. still. itches.
Anyway, thanks for reading. Glad to be back.
Congrats! So glad you're returning to normal.
