The Beginning
First off, I love how you can mark your entry as 'rambling' as that's certainly what I do.
Let's start at the beginning. It's March 2008 and I start noticing that when I get to work and climb the flight of stairs to my 'office' I am exhausted. I am embarrassed as I toss it off as being 'out of shape' and needing to lose weight (which I do). I have to compose myself at my desk and hope no one comes around the corner before I catch my breath.
Then I start having pain in my feet and my feet and ankles and legs start to swell. What is this? I avoid going to the doctor as I've never had any serious health issues so why would I worry now? My doctor is difficult to see as she's always late with her appointments and I'm working so I don't bother to go. After 3 weeks of nagging by others that I go and see a doctor I head off to a walk-in clinic. The smiling young doctor tells me I should do some aerobic exercise to take care of the swelling (he too thinks I'm just fat). OK, so I head home and start jumping on my mini trampoline which of course makes my painful feet hurt more.
During this time my sister-in-law (my husband's twin sister), who was waiting for a liver transplant, gets the call. This, of course, is now my entire focus and I pace (on my painful, swollen feet) around the hospital with the others all day as she has the transplant. No one except my husband knows that there is something wrong with me. 14 hours later those of us who waited it out get to see her in recovery. We are thankful she is alive. She had autoimmune hepatits and ulcerative colitis. She did not have it easy but was such a vibrant, powerful spirit.
Eventually I do go to see my own doctor. By this time, if I remember correctly, I also have some pain in my hands. She thinks I have rheumatoid arthritis and sends me off for some blood tests. So I go off and have them right away and head on home and think nothing of it. What the heck is RA? I start researching on the internet and hope it's not true. A few hours later she calls me and tells me to go to emergency. Something about my bloodwork is troubling. Perhaps I have a blood clot in my leg. So off I go. The emergency room is busy, of course. Eventually I am seen and the doctors there also think I have RA but come back tomorrow and we'll scan you leg to see if it's a blood clot. OK. I'm wondering if I should wish more that it be a blood clot and be done with it or if it's RA and it will be something chronic and debilitating I'll have to deal with for my entire life. I'm leaning towards the blood clot.
So the scan reveals no blood clot. Must be RA. The swelling is getting pretty bad and the pain is pretty intense. But I still go to work, run my life, take care of my family. Life goes on. My family doctor prescribes various drugs to which I react to constantly and go off of. Nothing is helping.
Three months later and I get to see the rheumatologist for the first time. He concurs that he thinks it's RA (though I am sero-negative I understand a lot of people are) and he prescribes Methotrexate. He tells me it will take 6 weeks to 3 months for it to do anything for me - so welcome pain, I guess you're with me for a while. What he does do that is really helpful is refer me to the arthritis physio program at the hospital that he works out of. They are lifesavers. The methotrexate however, is another issue. Week on (pill one), fine. Week two (pill 2), we have a problem. I don't feel so good and pass it off as the flu. But then with each successive pill it gets worse. Now I'm vomiting 5 days out of 7 and I'm on vacation. I call the rheumatologist from my hotel room and tell him what's happening. He tells me to 'persevere' so I do. This stuff is going to make me better, right? My legs are swollen to twice their size and I'm in pain - if this stuff is going to help me I'll keep taking it. Except my husband is threatening to take us all home if Mom doesn't get better. The kids are having fun and worried we're going to have to leave early and I feel awful. I try to keep my head out of the toilet. On the 6th day I finally stop throwing up and we celebrate by going out to dinner. My poor empty stomach rejects this idea (even though I only ate half my meal) and the pain from eating is incredible! I managed to last the whole vacation but it sure wasn't the best vacation I ever had. My daughter was making bead animal keychains to sell and I remember it being exhausting to carry these little things and walk to where she wanted to sell them, though it wasn't very far away. I am starting to get really concerned about my physical well-being.
5 weeks of methotrexate and I quit. I can't take it anymore. Throwing up 5 days out of 7 is not a way to live and I don't feel any better. The swelling and pain are still so intense. It's a busy summer. My parents' 50th wedding anniversary was coming up and so at my Mom's annual family gathering (which I had never attended) they were going to hold a 'mock wedding' ceremony and I wanted to be there. So I travelled by car with my family and surprised them. They didn't know we were going and it was great. Sitting in my car for that long didn't do my legs any favours and by this time I was having difficulties rising from chairs. I thought it was related to my joints. I have to say the throwing up part is weird. It is not food. It feels like it is coming from my lungs.
Next I am helping to organize a family reunion for upwards of 50 people on my Dad's side. I was well when I started the planning. By the time the reunion rolls around I am too sick to enjoy it. Too much pain. But I persevered and did everything I said I would do for it. My son helped me to make this awesome slide show with the pictures I had everyone send me from their various families. My Dad is from a family of 12 siblings so this was a big, but enjoyable, job. I must say I laughed and enjoyed myself anyway. It was also a celebration of my parents 50th wedding anniversary.
And then I was off to Winnipeg where I am from. Hadn't been there for years and was looking forward to it. Except I am really not well. I am not taking any medications now. My rheumatologist appointments were 3 months apart and he didn't prescribe anything for me after I stopped taking the methotrexate. My family doctor prescribed a 'baby dose' of prednisone right before I left for Winnipeg. At this time the swelling was so bad in my feet I could only were adjustable sandals. Good thing it was summertime! I bought some shoes to go on the plane and took them to a 'shoe guy' to alter them so I could wedge them on my feet. He took one look at me (I had been going there for years) and altered them free of charge. Two days in to my vacation after taking the prednisone and the shoes were flopping on my feet. The prednisone was taking away the swelling! Unfortunately I am plagued with exhaustion and I am still coughing up what I feel like is stuff from my lungs. It is frothy. My poor uncle that I am staying with think I am dying. Sick people freak him out, apparently, and you could hear me coughing that stuff up in the morning for miles. When I am staying with my friend we go to take the kids places and I am just too tired to walk. Why can't I walk any distance without feeling exhausted? What is wrong with me?
I had made an appointment to see a naturopath in Edmonton while I was there for my Mom's family get together for a couple of months later. A bunch of family members have seen this guy and think he's wonderful. Worth a shot. I never make it to the appointment. The day before I am to fly off I go and see my family doctor because the exhaustion is so strange and the coughing. What is that stuff I am coughing up? She sends me for an EKG and more bloodwork. Again I get a phonecall to go to emergency because of my bloodwork. Maybe I have had a heart attack. OK, where is this coming from? So I head off to the hospital. This time they again want to look for blood clots (this time in my lungs) and they admit me. I am not thrilled but, as the point out, if it is a blood clot I could die so best stay and let them do their scan. OK...
Again, there's no blood clot. This is the first time I see a respirologist. She is also concerned that I have enlarged lymph nodes and wants to do a lymph node biopsy just under my neck. This does not thrill me, but OK, if you think it's necessary. So, I submit to that. I lose my voice from this procedure. I think the anesthetist bruised my vocal chords. I have trouble speaking above a whisper for 3 months. The lymph node biopsy is inconclusive and reveals that my body is fighting 'something'. I didn't need a scar on my neck and no voice to tell me that my body is fighting 'something'. The day after my procedure I am informed my sister-in-law, the one who had the liver transplant, is back in the hospital. It does not look good. She is at another hospital. I make phone calls in the middle of the night to check on her. They tell me her BP is crashing but they are fighting to keep her alive. I try to be optimistic. In the morning my husband calls me to tell me that she has died. The respirologist wants to keep me to do more tests but I discharge myself to be with my family. My husband needs me and I'm not going to add to his burden.
It's now September 2008. I continue to see the respirologist and the rheumatologist. He doesn't seem to want to prescribe anything while we are trying to figure out what is going on with my lungs. While in the hospital my family doctor decides to put me on 20mg prednisone to see what happens while I am in that setting. A lot happened. The swelling got even better and then pain started going away. I was functioning again. It's now 2009 and the respirologist refers me to an infectious disease specialist to rule out that as a cause. I get tested for everything under the sun and I don't have any of those diseases. Whew! She also seems to be at the end of her rope and wants to refer me to someone she called "The Goddess of Interstitial Lung Disease". OK. What is ILD? Do I have that? Again I turn to Google. I am not happy with what I read.
It took 3 months for me to see the "Goddess". She immediately ordered a lung biopsy and I saw the surgeon and had the biopsy within 6 weeks of our initial appointment. I am worried that it will be too close to yet another family reunion on my Mom's side. We are all looking forward to that. But don't worry, it's day surgery. Or you'll just be in overnight. My husband took me to the hospital for the biopsy (we are at a different hospital from where I was admitted before) and I'm scared but cheerful and he is keeping my spirits up - he is really good at that. The activities in the pre-op area are entertaining. There is a 50'ish woman who seemed to have forgotten that her gown does not do up in the back and we are all treated to her flabby lily-white butt as she walks down the hall. We are giggling. Then there is a man who was thrown and stomped on by his horse and who somehow crawled or dragged himself to his truck to call for help. He was airlifted to this hospital and is back for more surgery. His story is amazing. Finally it's my turn. I am worried and they give me some 'happy medicine' and I am out. When I wake up the nurse is smiling and I see the anesthetist and he asks me if I can talk (I told him about the not speaking thing after the lymph node biopsy). I answer in the affirmative and he is thankful (as am I) that all is well. The nurse says she is going to remove my ART line and I am going to make a joke that maybe it will make me more artistic but I tell her I think I'm going to throw up instead. She takes the line out and clamps my arm like it's going to break. It is not pleasant.
Then off to my room. Wow, it has a great view of the city and the mountains and the helipad is right below my window so I can watch the helicopters land and see who they're bringing in. I feel fine except I have this drainage tube attached to my side and it's grossing me out and it is painful. I am on morphine but it's not really helping - or maybe it is and the pain would be that much more intense without it. I have no idea. I had the surgery on Friday and told my boss I'd be back at work on Monday. After all it's just day surgery or an overnight stay, right? Riiiiight.
I am enjoying the view and the menu picking is great. The food isn't terrible and you can pick your main dish or sides. It isn't warmed up frozen food. It's real stuff! My room is large, my roommate is a bit out of it (visits me in the middle of night - out of his head on medications) and I have a table and chairs beside the window for playing cards or games with the kids and husband. It is difficult to walk around with the drainage tube and machine but I am off the morphine and feeling good. But there is a problem, I have 'bubbles' in my line. Until there aren't any 'bubbles' I cannot be discharged. My overnight stay eventually turns into 5 days in the hospital. Sigh... this is my ongoing luck.
I am finally discharged. They tell me to take a few days off work but I have already missed a couple so I go to work the next day. I am a hard worker. :o) I don't want anyone to think I can't do my job because I am suffering from some unknown disease or ILD or RA or whatever it is. At work they order me electric staplers and electric hole punch machines and special pens and a special mouse to make my life easier. They are great and I am able to do my job. I attended the family reunion and had a wonderful time. My team even came in second in the bocce tournament. The lung biopsy showed I didn't have anything that was going to kill me right away so I am hopeful that my lungs will recover from whatever is ailing them and life will get more normal. I do have to take it easy with how far I walk, though. I definitely have ILD, though. The prednisone is helping me to function so we'll just leave me on that and see how it goes.
Let's start at the beginning. It's March 2008 and I start noticing that when I get to work and climb the flight of stairs to my 'office' I am exhausted. I am embarrassed as I toss it off as being 'out of shape' and needing to lose weight (which I do). I have to compose myself at my desk and hope no one comes around the corner before I catch my breath.
Then I start having pain in my feet and my feet and ankles and legs start to swell. What is this? I avoid going to the doctor as I've never had any serious health issues so why would I worry now? My doctor is difficult to see as she's always late with her appointments and I'm working so I don't bother to go. After 3 weeks of nagging by others that I go and see a doctor I head off to a walk-in clinic. The smiling young doctor tells me I should do some aerobic exercise to take care of the swelling (he too thinks I'm just fat). OK, so I head home and start jumping on my mini trampoline which of course makes my painful feet hurt more.
During this time my sister-in-law (my husband's twin sister), who was waiting for a liver transplant, gets the call. This, of course, is now my entire focus and I pace (on my painful, swollen feet) around the hospital with the others all day as she has the transplant. No one except my husband knows that there is something wrong with me. 14 hours later those of us who waited it out get to see her in recovery. We are thankful she is alive. She had autoimmune hepatits and ulcerative colitis. She did not have it easy but was such a vibrant, powerful spirit.
Eventually I do go to see my own doctor. By this time, if I remember correctly, I also have some pain in my hands. She thinks I have rheumatoid arthritis and sends me off for some blood tests. So I go off and have them right away and head on home and think nothing of it. What the heck is RA? I start researching on the internet and hope it's not true. A few hours later she calls me and tells me to go to emergency. Something about my bloodwork is troubling. Perhaps I have a blood clot in my leg. So off I go. The emergency room is busy, of course. Eventually I am seen and the doctors there also think I have RA but come back tomorrow and we'll scan you leg to see if it's a blood clot. OK. I'm wondering if I should wish more that it be a blood clot and be done with it or if it's RA and it will be something chronic and debilitating I'll have to deal with for my entire life. I'm leaning towards the blood clot.
So the scan reveals no blood clot. Must be RA. The swelling is getting pretty bad and the pain is pretty intense. But I still go to work, run my life, take care of my family. Life goes on. My family doctor prescribes various drugs to which I react to constantly and go off of. Nothing is helping.
Three months later and I get to see the rheumatologist for the first time. He concurs that he thinks it's RA (though I am sero-negative I understand a lot of people are) and he prescribes Methotrexate. He tells me it will take 6 weeks to 3 months for it to do anything for me - so welcome pain, I guess you're with me for a while. What he does do that is really helpful is refer me to the arthritis physio program at the hospital that he works out of. They are lifesavers. The methotrexate however, is another issue. Week on (pill one), fine. Week two (pill 2), we have a problem. I don't feel so good and pass it off as the flu. But then with each successive pill it gets worse. Now I'm vomiting 5 days out of 7 and I'm on vacation. I call the rheumatologist from my hotel room and tell him what's happening. He tells me to 'persevere' so I do. This stuff is going to make me better, right? My legs are swollen to twice their size and I'm in pain - if this stuff is going to help me I'll keep taking it. Except my husband is threatening to take us all home if Mom doesn't get better. The kids are having fun and worried we're going to have to leave early and I feel awful. I try to keep my head out of the toilet. On the 6th day I finally stop throwing up and we celebrate by going out to dinner. My poor empty stomach rejects this idea (even though I only ate half my meal) and the pain from eating is incredible! I managed to last the whole vacation but it sure wasn't the best vacation I ever had. My daughter was making bead animal keychains to sell and I remember it being exhausting to carry these little things and walk to where she wanted to sell them, though it wasn't very far away. I am starting to get really concerned about my physical well-being.
5 weeks of methotrexate and I quit. I can't take it anymore. Throwing up 5 days out of 7 is not a way to live and I don't feel any better. The swelling and pain are still so intense. It's a busy summer. My parents' 50th wedding anniversary was coming up and so at my Mom's annual family gathering (which I had never attended) they were going to hold a 'mock wedding' ceremony and I wanted to be there. So I travelled by car with my family and surprised them. They didn't know we were going and it was great. Sitting in my car for that long didn't do my legs any favours and by this time I was having difficulties rising from chairs. I thought it was related to my joints. I have to say the throwing up part is weird. It is not food. It feels like it is coming from my lungs.
Next I am helping to organize a family reunion for upwards of 50 people on my Dad's side. I was well when I started the planning. By the time the reunion rolls around I am too sick to enjoy it. Too much pain. But I persevered and did everything I said I would do for it. My son helped me to make this awesome slide show with the pictures I had everyone send me from their various families. My Dad is from a family of 12 siblings so this was a big, but enjoyable, job. I must say I laughed and enjoyed myself anyway. It was also a celebration of my parents 50th wedding anniversary.
And then I was off to Winnipeg where I am from. Hadn't been there for years and was looking forward to it. Except I am really not well. I am not taking any medications now. My rheumatologist appointments were 3 months apart and he didn't prescribe anything for me after I stopped taking the methotrexate. My family doctor prescribed a 'baby dose' of prednisone right before I left for Winnipeg. At this time the swelling was so bad in my feet I could only were adjustable sandals. Good thing it was summertime! I bought some shoes to go on the plane and took them to a 'shoe guy' to alter them so I could wedge them on my feet. He took one look at me (I had been going there for years) and altered them free of charge. Two days in to my vacation after taking the prednisone and the shoes were flopping on my feet. The prednisone was taking away the swelling! Unfortunately I am plagued with exhaustion and I am still coughing up what I feel like is stuff from my lungs. It is frothy. My poor uncle that I am staying with think I am dying. Sick people freak him out, apparently, and you could hear me coughing that stuff up in the morning for miles. When I am staying with my friend we go to take the kids places and I am just too tired to walk. Why can't I walk any distance without feeling exhausted? What is wrong with me?
I had made an appointment to see a naturopath in Edmonton while I was there for my Mom's family get together for a couple of months later. A bunch of family members have seen this guy and think he's wonderful. Worth a shot. I never make it to the appointment. The day before I am to fly off I go and see my family doctor because the exhaustion is so strange and the coughing. What is that stuff I am coughing up? She sends me for an EKG and more bloodwork. Again I get a phonecall to go to emergency because of my bloodwork. Maybe I have had a heart attack. OK, where is this coming from? So I head off to the hospital. This time they again want to look for blood clots (this time in my lungs) and they admit me. I am not thrilled but, as the point out, if it is a blood clot I could die so best stay and let them do their scan. OK...
Again, there's no blood clot. This is the first time I see a respirologist. She is also concerned that I have enlarged lymph nodes and wants to do a lymph node biopsy just under my neck. This does not thrill me, but OK, if you think it's necessary. So, I submit to that. I lose my voice from this procedure. I think the anesthetist bruised my vocal chords. I have trouble speaking above a whisper for 3 months. The lymph node biopsy is inconclusive and reveals that my body is fighting 'something'. I didn't need a scar on my neck and no voice to tell me that my body is fighting 'something'. The day after my procedure I am informed my sister-in-law, the one who had the liver transplant, is back in the hospital. It does not look good. She is at another hospital. I make phone calls in the middle of the night to check on her. They tell me her BP is crashing but they are fighting to keep her alive. I try to be optimistic. In the morning my husband calls me to tell me that she has died. The respirologist wants to keep me to do more tests but I discharge myself to be with my family. My husband needs me and I'm not going to add to his burden.
It's now September 2008. I continue to see the respirologist and the rheumatologist. He doesn't seem to want to prescribe anything while we are trying to figure out what is going on with my lungs. While in the hospital my family doctor decides to put me on 20mg prednisone to see what happens while I am in that setting. A lot happened. The swelling got even better and then pain started going away. I was functioning again. It's now 2009 and the respirologist refers me to an infectious disease specialist to rule out that as a cause. I get tested for everything under the sun and I don't have any of those diseases. Whew! She also seems to be at the end of her rope and wants to refer me to someone she called "The Goddess of Interstitial Lung Disease". OK. What is ILD? Do I have that? Again I turn to Google. I am not happy with what I read.
It took 3 months for me to see the "Goddess". She immediately ordered a lung biopsy and I saw the surgeon and had the biopsy within 6 weeks of our initial appointment. I am worried that it will be too close to yet another family reunion on my Mom's side. We are all looking forward to that. But don't worry, it's day surgery. Or you'll just be in overnight. My husband took me to the hospital for the biopsy (we are at a different hospital from where I was admitted before) and I'm scared but cheerful and he is keeping my spirits up - he is really good at that. The activities in the pre-op area are entertaining. There is a 50'ish woman who seemed to have forgotten that her gown does not do up in the back and we are all treated to her flabby lily-white butt as she walks down the hall. We are giggling. Then there is a man who was thrown and stomped on by his horse and who somehow crawled or dragged himself to his truck to call for help. He was airlifted to this hospital and is back for more surgery. His story is amazing. Finally it's my turn. I am worried and they give me some 'happy medicine' and I am out. When I wake up the nurse is smiling and I see the anesthetist and he asks me if I can talk (I told him about the not speaking thing after the lymph node biopsy). I answer in the affirmative and he is thankful (as am I) that all is well. The nurse says she is going to remove my ART line and I am going to make a joke that maybe it will make me more artistic but I tell her I think I'm going to throw up instead. She takes the line out and clamps my arm like it's going to break. It is not pleasant.
Then off to my room. Wow, it has a great view of the city and the mountains and the helipad is right below my window so I can watch the helicopters land and see who they're bringing in. I feel fine except I have this drainage tube attached to my side and it's grossing me out and it is painful. I am on morphine but it's not really helping - or maybe it is and the pain would be that much more intense without it. I have no idea. I had the surgery on Friday and told my boss I'd be back at work on Monday. After all it's just day surgery or an overnight stay, right? Riiiiight.
I am enjoying the view and the menu picking is great. The food isn't terrible and you can pick your main dish or sides. It isn't warmed up frozen food. It's real stuff! My room is large, my roommate is a bit out of it (visits me in the middle of night - out of his head on medications) and I have a table and chairs beside the window for playing cards or games with the kids and husband. It is difficult to walk around with the drainage tube and machine but I am off the morphine and feeling good. But there is a problem, I have 'bubbles' in my line. Until there aren't any 'bubbles' I cannot be discharged. My overnight stay eventually turns into 5 days in the hospital. Sigh... this is my ongoing luck.
I am finally discharged. They tell me to take a few days off work but I have already missed a couple so I go to work the next day. I am a hard worker. :o) I don't want anyone to think I can't do my job because I am suffering from some unknown disease or ILD or RA or whatever it is. At work they order me electric staplers and electric hole punch machines and special pens and a special mouse to make my life easier. They are great and I am able to do my job. I attended the family reunion and had a wonderful time. My team even came in second in the bocce tournament. The lung biopsy showed I didn't have anything that was going to kill me right away so I am hopeful that my lungs will recover from whatever is ailing them and life will get more normal. I do have to take it easy with how far I walk, though. I definitely have ILD, though. The prednisone is helping me to function so we'll just leave me on that and see how it goes.
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