I'm very fortunate that I got sick in an age where I can connect with people all over the world who have the same condition that I have. I wanted to share some of the blurbs I posted in the support groups to give an idea of the journey I've been on the past few months. I left out the other peoples comments obviously out of respect for their privacy. My blurbs give a snapshot of the journey I've been on since September 2015.
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SEPTEMBER 23, 2015
Is it normal to take Methotrexate only once a week in a high dose?
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SEPTEMBER 25, 2015
I don't want to have this crappy disease! I don't want to be on all of this medication. I'm really mad! I hate what these meds are doing to me almost as much as what's happening to my body. I'm humiliated by the fact my fiance has to help me get dressed and get in & out of the tub. What is wrong with me? I can't push myself out of bed, I can't even do my hair. I want to cry. And I'm tired of appointments, and tests, and needles.. I'm so done with the bloody needles! And doctors ... Who don't look me in the eye... That makes even madder! Just keeping it real. My usual way I cope with anger is to run 10km... So I'm mad I can't even do that!? Anyone care to share how they cope in healthy ways with anger? (I don't drink, drug, eat crappy food, and I don't want to take it out on someone else) I don't want to stuff or ignore these feelings.... I just am at a loss as to how to get all of this anger out, as I can't default to my usual exercise method. Thanks for reading.
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SEPTEMBER 27, 2015
Ok.. So I'm in Subway yesterday, and had a weird experience! I had this young boy make me a wrap, and in my 8 years of Subway it was the worst wrap I've ever had, I took one bite & it fell apart! I began to sob! I was so mad at that kid... OVER A WRAP! I ended up laughing at myself. I talked to my Mom, she suggested perhaps its 'steroid rage'? Anyone else experience this sort of thing? (They lovingly made me a new wrap by the way.. People are awesome)
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SEPTEMBER 28, 2015
I just got 8 hours of sleep! In a row!
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SEPTEMBER 29, 2015
Good morning everyone! I wanted to introduce myself. My name is Toni-Lee & I hail from Canada. I am 39 years old. I live on a beautiful acreage in Central Alberta. I started experiencing DM symptoms in the middle of the summer & it got extreme after going to Mexico. At first I thought it was just a really weird Mexican virus. The doctors started tossing around the word 'Dermatomyositis' and I had to practice saying it 30 times before I got it right. I'm still in the process of waiting for a confirmatory muscle biopsy, but the Rhuematologist has started me on Methotrexate, along with Prednisone. He wants to put me in RITUXAN (I'm just in process if trying to that drug covered by my insurance). It's been a scary ride, as I'm a proud career woman, and I'm now on medical EI. My fiance has a golf course, and I can't operate the equipment at the moment. On the plus side, I've dropped 10lbs of the fluid my body has been holding onto! I've gone off the deep end where my food is concerned.. Crazy juicing, salads, homemade soups. NOTHING processed, sugary or crap is getting into my body. It's helping.. I can feel it. I can get around allot better today, but seem to hit a brick wall about 4:00 pm. They did a CT scan, and some of my lymph nodes are swollen, so am also in the process of being tested for cancer. (Canadian health care is free... But it's a looooong wait) so I'm doing my best to live inside the moment. I'm grateful for these groups as they've been really helpful in understanding what's going on (on so many levels). I'm the type of person who is over the top happy & I am focusing on vibrating in a space of love & above. I truly believe I can't afford to delve into resentment or self pity... If I'm going to get better I'm putting all of my focus on gratitude & kindness. I don't want to go through this and end up with ruined relationships because I was being a jerk. Plus I find it inspires people to help move things along with all of the appointments & tests that need to be arranged (which is a full time job on its own). Don't get me wrong... I've had huge snot bubbling cries, but they always leave my face swollen with Edema.. EWWW! Thanks for letting me be a part of this group .. It helps to know I'm not really '5.5 in a million' (stats on how many
people get DM.
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SEPTEMBER 30, 2015
Found out that my benefits provider will only cover RITUXAN for Rhumatiod Arthritis. It's NOT covered for Myositis. I don't understand....
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OCTOBER 1, 2015
I spent an hour getting Hypnotized today! Left with an overall sense of well being. Training my mind to help me to relax, slow down & be ok with having to take my time with things. I feel really good! Just wanted to share
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OCTOBER 3, 2015
I'm Scheduled for a muscle biopsy 7:30 am Monday morning. Do I need to be nervous? Does it hurt?
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OCTOBER 4, 2015
I had an EMG a couple of weeks ago! I was swollen 3 x's my normal size because of Edema. My Mom was in the room (neither of us knew what we were getting into) She almost fainted.. She had to leave the room. I guess she had a hard time watching me get zapped with electricity. I've decided that unless they can provide a compelling reason, I am NEVER doing that test again! I'm hoping the muscle biopsy is a less painful process! (Though I'd prefer a Swedish massage on a sunny beach).
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OCTOBER 6, 2015
Let it out, let it flow. I think there's a distinguishable difference between grieving & 'staying positive'. We must feel all the depths of our emotions. I think it's imperative to being a 'positive' person... We must acknowledge the hurt first before we can release it. That's much much different than self pity. And truly.. We have legitimate reasons to grieve & cry about. And then.. Before you know it, the sun is shining on your face & you're feeling the sunlight of the spirit.
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OCTOBER 7, 2015
Had muscle biopsy on Monday, and I can hardly walk I'm in such agony. No fever, but it's swollen three times the size of the other leg. I can barely breath it hurts so much. Pain meds are not touching it. Despite sounding like a drama queen, I think I should get it checked out?! Maybe it's the DM flaring up? (Not that it really left) The Edema is coming back?
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OCTOBER 10, 2015
My seven year old disclosed to me that he's afraid I'm going to die (I've been in/out if hospital past few weeks. Awe little buddy!! I assured him I intend in being around for as long as possible & I intend in a full recovery. He's grown up so much I the past two months. He says things all the time like, "Mom, I love your voice & the way you smell." I can tell he's just loving me. I am floored by his love. And I feel ... Terrible that he's afraid. I've been talking with him about having faith & how to love it like it is & let the good times roll! Thought I'd share because this is a 'side effect' of this disease that took me by surprise. The deepening of the bonds in ALL of my relationships. Everyday I make healthy food choices & take the prescribed medications (side effects be damned). I do this because this disease isn't the end of my world.. It can always be worse. All of the people I love are still here & alive! As far as I'm concerned.. These are the good times! HAPPY CANADIAN THANKSGIVING everyone! I consider this group a part of my abundant blessings.
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OCTOBER 13, 2015
It's been over a week since I've had a muscle biopsy in my thigh & I'm really struggling. The DM is causing the leg to be three times the size of the other leg, but I think it's just Edema.. Ive gained 5lbs in last 2 days. I really don't think its clotting. Ive gone to the hospital, Emergency doctors don't know how to treat it, family doctor doesn't know how to treat it.. Family doctor prescribed me Oxycodone.. I took half a pill yesterday & literally almost fell over.. I can't stand the way that stuff makes me feel. It just makes me into someone unlike myself. I do take Methotrexate on Wednesdays, so maybe that'll stop the DM from doing a number on my leg? Rest of my muscles ache from not being able to bear weight & using a cane. when i walk the leg us a 10/10 pain level, so I've just lying here and staring at the ceiling since 4:30 am.. In throbbing agony. I don't see the point in going to hospital, as I'm not in immediate danger. I do Have an appointment with the Rheumatologist this Saturday, so I'll wait until then & hope tomorrow's Methotrexate dose brings the swelling down. Today I have to drive my son to school.. So no pain meds until I get back home (not that I even want to take the evil things) thanks for listening ... I don't like to dump this on my family, as they just feel bad. But I just... Wanted to share with someone. Thanks.
- Thanks for being ok with the venting. It feels do counter-intuitive. At least here, I know you guys 'get it'. My family just all seems to be at a loss.. I feel bad for them!
- the narcotics REALLY mess me up. I'd rather take the pain.
- None of docs think it's (my leg) infected.. I don't have a fever or anything. But maybe? The Healthlink nurse wants me to go to my family doctor today (again just feels like a waste of time)
- I've been doing well with elevation, I've never heard of water pills... I'm going to visit walkin doc again today... I feel like such a pain in the the ass... But better to be diligent & rule out infection. I can ask about water pills this morning.
- (regarding a suggestion to use Fentanyl) I really don't want to take any if that stuff. It REALLY messes with my head. No judgements on anyone who needs it or uses it though, personally I really can't handle it.
- I had actually just dropped 20lbs, even taking Prednisone & 3 weeks of Methotrexate. I've been juicing, eating clean whole foods, nothing processed, no refined sugars . Salads, homemade soups, I was feeling great! Then I had this muscle biopsy and have gained 5lbs.. I swear it's all fluid in my left leg. Patiently waiting at the walkin clinic now... Just making sure it's not infection.. Checking to see if I could get something for Edema. I'd be happy if I can just get to being able to bear weight on this leg again' lol!
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OCTOBER 13, 2015
I wanted to share some good news! To make a long story short - I've had to chase after three specialists & finally my family doctor to get me an appointment with a Hemotologist to exam swollen lymphnodes that came from a CT scan done 4 weeks ago. I got a call from the Hemotologist today & she personally apologized! She said she just finished reading my file and my story & feels so bad about what has happened to me. She sat on the phone with me & asked lots of questions & the best part... I've finally got the appointment to rule out cancer! It's about focusing on the positives right?!
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OCTOBER 14, 2015
Ok... So here I am a week later.. I was having coffee at my Moms work (nursing home) and I looked down & blood, liquid & puss was gushing out of my leg.. The worst rancid & putrid smell of my life!!! My pants were soaked! I happened to be near two nurses... Who helped me bandage up the biopsy site. So here I am I. Emergency again .. Going for another ultrasound... Depends in how big the abscess is they may need to make an incision to drain it. I KNEW something wasn't right... I KNEW it!! The doctors kept telling me everything was fine... And that they didn't know why I was in do much pain.... I feel good knowing I'm not crazy... And I'm glad the fluid bump is finally leaving my leg!
- They've started me on IV antibiotics. I've asked to see the neurologist, because they have a knowledge if DM that the emergency docs don't have. I will ask about a wound cares specialist... They mentioned I'll likely need to come back twice a day for daily IV antibiotics... I just knew something wasn't right...
- I live very remote & in the country... Home care is likely an issue. I'm trying not to feel angry that I've been suffering with 10/10 pain all week. I saw three doctors... Explained my condition & how much it hurt. They just keep sending me away... I'm going to insist in speaking with Neurologist before I leave today. So the "expert" can at least have a chance to check it out & suggest treatment. Red Deer Regional hospital is at over capacity... They just kick us out as soon as they can because they need the beds. I'm tired of suffering.. It's not fair.. They should have checked for infection last week.
- I'm now going to hospital every 12 hours for IV antibiotic treatment. I was able to communicate to the ER doctor accountably & without blame my dissapointment that three doctors didn't catch the abscess.. That it took my leg exploding with puss for them to clue in to infection. That three doctors dismissed my pain as "just muscle biopsy pain". The doc was really good with me.. He listened & said he can't speak about what's happened.. But he personally wants to tracks progress. So I'm off to hospital every 12 hours for IV antibiotics & have them keep a close eye on the infection. Anyway.. At least I've got some relief from the pressure in my leg. Honestly for now I just feel so dang rotten. I just don't have any more energy to stay mad. Just so done with being in pain.
- It was totally bizzaire.. I just exploded puss/blood all over the lobby & two nurses there to visit the Seniors home just 'happened ' to walk by at that exact moment! So cool.. Love it when stuff like that happens
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OCTOBER 15, 2015
Just got home from round #2 antibiotics. They had to do some serious poking & draining. But now know what morphine feels like!
- Day 2 of twice a day antibiotics. They took a culture last night, but it hasn't come back from lab yet.
It's not feeling any better yet & it actually exploded again in the grocery store tonight.
They've been giving morphine for the pain. So there's that.
Thanks for checking in guys. In a world where latley all I see are doctors and nurses where I'm just another face, it's nice to know someone out there cares.
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OCTOBER 16, 2015
Been in emergency for three hours now... They're opening the wound to drain. WAH!!!!!!!!! Muscle Biopsys stink! LITERALLY!!!!!
- Went in to ER for my morning IV treatment! Better news.. Things are looking better.. I think the antibiotics are starting to work smile. Plus I feel happier & more like myself today... Ya know?
- Considering, I've been coming to the hospital every 12 hours to get IV therapy antibiotics along with morphine & gravol. My biopsy site had abscessed & I run fevers off & on during day. When I'm home it's all I can do to not sleep. I've had 5 shots of morphine in 3 days.. And about to get #6. I hope they get this under control... The immune suppressant drugs are making it hard. Sorry to dump in a message like this.. I just need to honest about where I'm at right now. I'm really struggling. right now it's tough. I'll be brave. I feel like my independence has been taken away & I hate relying on people.
- They're going to send me for an ultrasound on my leg again.. Drain it.. Pack it.. Morphine & gravol along with IV antibiotics. It's going to be another VERY late night.
- Final update: white blood cell count stil very high. Kidney & liver check out all a-okay. Waiting for lab culture to determine if using correct antibiotic. Home now.. Ready for soup & bed. Sweet dreams.. And if you're actually reading this... Thanks & goodnight.
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OCTOBER 21, 2015
Ok.. Latest frustrating symptom (I've got DM).. Swallowing! As in my ability to actually swallow my food is rapidly dwindling. It's really frustrating. Not to mention at times it feels I may choke. I've mentioned this to both my Rheumatologist & Neurologist. They both said as long as I'm not 'aspirating', just keep an eye on it. It's really .. Frustrating, anyone else have trouble swallowing?
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OCTOBER 24, 2015
My Mom took me away to the mountains to help me have a weekend away from illness. We just left hospital in Canmore, Alberta (having my dressings changed) and we are now having breakfast.
Spent the day in a wheelchair. That was awkward and emotional. No thanks.
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OCTOBER 25, 2015
Ok.. I'm not sure why but this video made me giggle.. Especially the 'doomsday musical effect' when they show the 'hands' of someone with Dermatomyositis!! LOL Really!? https://youtu.be/gEqkWJkJuxs?list=PL6EA2F2986E7BE2F1
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OCTOBER 26, 2015
I have DM & just a month & a half in with taking immune suppressants. (Prednisone, Methotrexate & Cloroquine) I have yet to get a cold, or flu... But I'm nervous about what'll happen if I do. I've never had had flu shot nor pneumonia shot. I'm going to ask my doc, but thought I'd query the group to get your perspective & experience?! Thanks.
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NOVEMBER 4, 2015
I've just been approved to be treated with RITUXAN. I get my first dose on November 23rd. In just wondering what others experience with RITUXAN is? Trying to prepare...
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NOVEMBER 9, 2015
Ok.. Here's a weird one & would appreciate thoughts & or feedback. On Oct 5, I had a muscle biopsy done. It was ordereD by my Rhuematologist. It became abscessed and infected. I was in & out the hospital over 3 weeks getting antibiotics & morphine for the pain. I'm off antibiotics now, but am going to the walkin clinic every 48 hours so they can repack the wound. I've been walking around with a gaping hole in the side of my leg since Oct 5. You can literally look into my leg and peer down into a tunnel in muscle! I'm off antibiotics as the infection is gone. The problem is... It's NOT healing up. The walkin clinic doctors are starting to get worried, she said "I don't Understand why this isn't healing up, I've never seen any thing like this?!" She suggested I go to my Rheumatologist so see what can be done about it. I'm at a loss... The surgeon who did the muscle biopsy is just a general surgeon. I don't think the Rheumatologist will know much about muscle biopsy? I did leave message for him, but he's bot back until later in the week. I've asked them to close it up, but they say they if they do it'll just abscess again. Has anyone else ever had wounds that just won't heal? By the way .. The biopsy confirmed a Dermatomyositis & Lupus. Apparently my case was discussed I front if a panel of Neurologists!! Anyway... Wishing I could close the hole in my leg & get on with life!!!!!!! Thanks for reading.
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NOVEMBER 16, 2015
I've been sitting in the waiting room at docs office for over 90 minutes now. I do this every other day to get my biopsy wound repacked. Later today I go sit at the lab for bloodwork & then to sit & wait for a mammogram. In past two months I've spent a large portion if my life sitting in hospitals & waiting rooms. I'm not complaining... My healthcare is FREE just wondering what others do to pass the 'waiting room monotony'?
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NOVEMBER 23, 2015
The most profound thing happened today! I started RITUXAN & after driving 2.5 hours home in Blizzard conditions, I arrived at my country home to discover that the running group I used to run with came & spread Christmas all over! Beautiful wreath on the door, nativity scene, decorations, they even put up the tree for me...AND they filled my fridge with food, and made me gluten free macaroons.. AND I got cards with hand written letters telling me how much I mean to them.....little notes all over the walls & counters...AND I got two brand new pjs! I honestly never knew people cared this much.. Last week I honestly felt like I wanted to give up & that this disease was kicking my ass. I was feeling pretty sad & really bummed out about not being able to run. i really really miss it. Thats why in so touched by my running buddies doing thus for me. It's amazing what kindness can do for people! I'm inspired to spread some kindness of my own! I wanted to share this experience with this group because you've all been SO GREAT with each other & supporting each other. Thank you.
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NOVEMBER 27, 2015
So this happened: I arm wrestled my seven year old.... And he won. Feeling proud & disappointed all at the same time!
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DECEMBER 14, 2015
I literally fell on my face this morning.. I saw stars! I cried just a little... Now I'm resting on the couch I can barley move my body. Pounding headache & nausea. I truly believe I'm ok.. Just hard to rest because I've got so much to do! Ugh.. I'm such a klutz!
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JANUARY 11, 2016
It's been a while since I've posted in this group. I've been consumed with life & focusing on healing my body. I've been cleared for Cancer. All tests show that Cancer is not causing the DM. I'm up to walking 2km daily & have started to taper the steroids! Still on Methotrexate & Chloroquine, but I'll take it! I've been able to bath again, the wound in my leg has healed up (despite the ugly scar). There was a point I thought I'd never feel this good again... But here it is! So many have been supportive in this group when I was in the 'thick' of this, I wanted to share some good news too! ❤ xo
