Monday, April 8, 2013
Like others with Wegener's, I had a variety of symptoms that didn't set off any "real" alarms. Unlike many, it only took 6 months from the first symptom to diagnosis. I was blessed to have a doctor experienced with Wegener's in the hospital that I visited.
February 2010 - Seasonal Allergies
I lived in Tacoma, Washington. Allergies aren't uncommon for people. (Although I had never had problems before.) It was late winter/early spring, the flowers were beginning to bloom. I had a runny nose that wouldn't go away. I visited my primary care manager and was given allergy medication. I went home. Took the medications religiously. Throughout March, April, May, and June no change but the medication did provide some relief.
March 2010 - Pain in Shoulder
I woke up one morning and realized my left shoulder REALLY hurt. Thinking I had just slept on it wrong or done something I couldn't remember doing, I overlooked it as nothing. However, I couldn't even put my hair up without severe pain. Lifting my arm above my head could only be done if I used my other arm to to push it up. It went away after about a week.
July 2010 - Swollen Ankle
July 4th - I spent the day with my kids and a friend at the festival that was going on. At the end of the day I noticed that my right ankle had swollen to twice it's normal size. Considering I had spent the entire day on my feet, I blew it off thinking it would go away once I got off my feet. I still have allergy problems.
July 15 - Pain starts in my joints. I couldn't do anything without cringing in pain. Something as simple as getting out of bed or the shower have now become excruciating and close to impossible. I go to my primary care manager,(PCM), no real diagnosis made but given percocet for pain.
July 21 - Pain is getting worse. I find that I can't sleep without taking pain meds. After taking the medication the pain subside enough for me to fall asleep. I also realize that standing from a seated position is almost out of the question. During the previous week, I have taken to laying on the floor, while visiting friends, hoping the pain will go away. My friend then suggests using the neil med sinus rinse to help relieve some of the sinus problems I am still having.
July 30 - I am at work and find that standing and talking to people makes me tired. If I sit standing up is almost impossible.
August 1 - Another visit to my PCM. Now there is bleeding my right ear. Ear is checked, no current bleeding. Showing signs of an ear infection. I am not able to get ear drops my ear infection due to a problem I had when I was 2. There is still a hole in my ear drum, so ear drops are out of the question. The joint pain is also checked, given another prescription for percocet and sent home.
August 3 - My eyes are now bloodshot. I am not talking a little. People are telling me I look like I have been smoking marijuana for days on end.
August 5 - My eyes are still bloodshot. Again I go to my PCM and receive eye drops.
August 6 - My eyes are now sensitive to light. I am not able to drive during the day, since the sun hurts my eyes. The joint pain and sinus pain are so bad that I go to the Emergency Room. 5 hours later, sent home with more percocet.
August 8 - Driving has become impossible, joints are screaming, sinus still clogged. But I have small purple splotches on my skin. I again visit the ER begging for help. I am checked out again and yup another prescription for percocet.
August 11 - ER visit begins the day. My mouth now has problems to add to my list. My gums are swollen. They are so swollen that it looks like my teeth are going to fall out of my head. I am given a mouthwash, toothpaste and told to go to the dentist.
August 12 - I notice three small sores on my tongue in a cluster.
August 13 - Visit to the dentist. After having brushed and flossed my teeth for years on a daily basis, I am told I have sever periodontal problems and it will cost me in the 20k range. That is my portion, after my insurance pays their part.
August 14 - I have had too much. I again go to the ER. On the walk up to the doors, about 150 feet, I am severely out of breath. I get to the check in counter, she asks me how she can help me and I burst into tears. I go through triage and wait in the waiting room. I fall asleep in the chairs. After 3 hours I am taken back to the exam rooms. The doctor decides to run tests. I had one doctor and one nurse visit me before these tests. I only say this because what happens next surprised me. Once the tests come back there are 2 nurses, 4 medical assistants and the doctor in the room. They are putting in an IV and asking me if I am willing to receive blood products.
I entered the ER August 14th and left on the 18th. The initial diagnosis was Rheumatoid Arthritis. I later found out my blood test show a very low red blood cell count and an inflammation marker of 375. I am still not sure what that number means but apparently it was high, especially for a 32 year old.
It was found that I had joint, eye, ear, lung and sinus involvement.
February 2010 - Seasonal Allergies
I lived in Tacoma, Washington. Allergies aren't uncommon for people. (Although I had never had problems before.) It was late winter/early spring, the flowers were beginning to bloom. I had a runny nose that wouldn't go away. I visited my primary care manager and was given allergy medication. I went home. Took the medications religiously. Throughout March, April, May, and June no change but the medication did provide some relief.
March 2010 - Pain in Shoulder
I woke up one morning and realized my left shoulder REALLY hurt. Thinking I had just slept on it wrong or done something I couldn't remember doing, I overlooked it as nothing. However, I couldn't even put my hair up without severe pain. Lifting my arm above my head could only be done if I used my other arm to to push it up. It went away after about a week.
July 2010 - Swollen Ankle
July 4th - I spent the day with my kids and a friend at the festival that was going on. At the end of the day I noticed that my right ankle had swollen to twice it's normal size. Considering I had spent the entire day on my feet, I blew it off thinking it would go away once I got off my feet. I still have allergy problems.
July 15 - Pain starts in my joints. I couldn't do anything without cringing in pain. Something as simple as getting out of bed or the shower have now become excruciating and close to impossible. I go to my primary care manager,(PCM), no real diagnosis made but given percocet for pain.
July 21 - Pain is getting worse. I find that I can't sleep without taking pain meds. After taking the medication the pain subside enough for me to fall asleep. I also realize that standing from a seated position is almost out of the question. During the previous week, I have taken to laying on the floor, while visiting friends, hoping the pain will go away. My friend then suggests using the neil med sinus rinse to help relieve some of the sinus problems I am still having.
July 30 - I am at work and find that standing and talking to people makes me tired. If I sit standing up is almost impossible.
August 1 - Another visit to my PCM. Now there is bleeding my right ear. Ear is checked, no current bleeding. Showing signs of an ear infection. I am not able to get ear drops my ear infection due to a problem I had when I was 2. There is still a hole in my ear drum, so ear drops are out of the question. The joint pain is also checked, given another prescription for percocet and sent home.
August 3 - My eyes are now bloodshot. I am not talking a little. People are telling me I look like I have been smoking marijuana for days on end.
August 5 - My eyes are still bloodshot. Again I go to my PCM and receive eye drops.
August 6 - My eyes are now sensitive to light. I am not able to drive during the day, since the sun hurts my eyes. The joint pain and sinus pain are so bad that I go to the Emergency Room. 5 hours later, sent home with more percocet.
August 8 - Driving has become impossible, joints are screaming, sinus still clogged. But I have small purple splotches on my skin. I again visit the ER begging for help. I am checked out again and yup another prescription for percocet.
August 11 - ER visit begins the day. My mouth now has problems to add to my list. My gums are swollen. They are so swollen that it looks like my teeth are going to fall out of my head. I am given a mouthwash, toothpaste and told to go to the dentist.
August 12 - I notice three small sores on my tongue in a cluster.
August 13 - Visit to the dentist. After having brushed and flossed my teeth for years on a daily basis, I am told I have sever periodontal problems and it will cost me in the 20k range. That is my portion, after my insurance pays their part.
August 14 - I have had too much. I again go to the ER. On the walk up to the doors, about 150 feet, I am severely out of breath. I get to the check in counter, she asks me how she can help me and I burst into tears. I go through triage and wait in the waiting room. I fall asleep in the chairs. After 3 hours I am taken back to the exam rooms. The doctor decides to run tests. I had one doctor and one nurse visit me before these tests. I only say this because what happens next surprised me. Once the tests come back there are 2 nurses, 4 medical assistants and the doctor in the room. They are putting in an IV and asking me if I am willing to receive blood products.
I entered the ER August 14th and left on the 18th. The initial diagnosis was Rheumatoid Arthritis. I later found out my blood test show a very low red blood cell count and an inflammation marker of 375. I am still not sure what that number means but apparently it was high, especially for a 32 year old.
It was found that I had joint, eye, ear, lung and sinus involvement.
No comments:
Post a Comment