How it started cont 1

So we went to the lake for the May long weekend. As usual I procrastonated and saw the Dr on a Friday so had the weekend to stew about things. I spent the weekend on the couch, I had not energy to do anything. On Thursday at work I took the elevator up the three floors to my office, I had walked those stairs for the past 10 years! This was a strong indicator that something was wrong.
Tuesday I went back to the Dr and was started on 60mg of prednisone a day. They figured i had dermatomyositis and needed to see a rheumatologist. Wed the office called and I went to the rheumatologist on Thursday and started on the road to exploration. I was going to be checked for cancer and get a baseline of where my body was so as changes happened we would know where we were coming from. 
As we were getting close to the supposed date when the new union was going to the labour board I got the forms for LTD because if we changed unions I wanted the known not the unknown in regards to LTD. It was an aside from the resident about being off that got me thinking, no one said I would be off work for an extended period of time. It is true that you don't hear everything when something rocks your world. So I filled out the forms and filed them before the end of May.
In the meantime I was at home having difficulty taking care of myself. If the phone rang when I was in bed and I had to move to answer it I could feel my muscles tear as I moved. Yes I could feel them tear! Scary. My skin was breaking down. I was having two naps a day and my elbows and arms were breaking down. I had to change sides so my hips wouldn't break down. My husband and I went and bought bamboo sheets to help prevent more breakdown. I was looking at getting a sheep skin as well. It was scary, sick and elderly were the ones whose skin broke down not the nurses!
Caring for myself, in the morning I would get up and have a bath, the Cat (my friend who works with essential oils) recommended lavender oil and bath only. I had to turn onto my stomache and get up on my knees to get out of the tub. I could not just push up with my arms and get out of the tub. I had trouble drying myself especially my feet so I would put the bamboo towel on the floor, pull it between my toes and let it brush against my body to dry. when I was done I needed to lay down for a bit before dressing and going for breakfast. It sure takes alot of energy to bath and dress. I never realized this before. I couldn't carry the laundry downstairs or lift the laundry soap to put into my front load washer! The three sets of stairs to the basement were a real chore, if I did them once a day I was done! My 70+ year old mother came in for a few weeks to help out. 
I am a Reiki Master RM working on my RMT as i would like to teach Reiki. I went for a treatment in May and cried for quite awhile as she worked on my. One of the things we talked about was a book called Meals that Heal Inflammation. I obtained the book and read it. By the end of May I started on an anti inflammatory diet. No gluten, no sugar, no processed food and no milk products. You have to forget the no and look at what you can eat. The book helped with this and having a husband who loves to cook I ate amazing. Lots of fresh fruit, vegetables, chicken, fish and since we get our beef straight from my dad we ate beef too. I had Reiki from my master about once every two or three weeks in the first few months as well I give myself reiki daily.
T, the lady who does my reflexology also does bodytalk and I saw her every three weeks the first few months and now see her at least once a month. Its amazing what you find out about yourself. I know I was not taking care of myself. In December of 2011 my hemoglobin was 71, they transfuse people at 80! so what did I do, I was booked to work evening shift and call in the operating room so I went to work and worked from 3pm to 130am then got called back at 230 and worked until 7am. You know they couldn't work without me (sarcasm). Went and saw an obgyn and got booked for an endometrial ablation and took some serious meds for three months prior. They were to decrease the bleeding I experienced with my period. The first month one a day helped, the next month 2 a day were needed the last month I bled until I had my surgery. Thankfully I no longer have a period. I can't imagine having to deal with that while I felt so rotten!
In June I went to a naturopath to see what they could do for me. conventional medicine deals with your symptoms and treats them but they dont always treat what had caused the symptoms. Alternative medicine does that! On top of my diet I started taking some supplements for inflammation and vitamins. She wanted me to do a cleanse as well. So I started a Mediclear + cleanse for three weeks. As I did this my back started to break out, first week at my waist, second week my bra line and then up a bit higher. almost along nerve roots. So as my liver was clearing out it was pushing toxins out of my skin. But i was feeling a bit better and able to do a bit more.
In July I went to see the neurologist. That was a hoot (sarcasm again!). He tested my nerve conduction on the skin surface and then in the muscles with what looked like an accupuncture needle attached to wires. interesting. then he tested my muscle strength, I was okay until he put me on a step stool and said stand up. I could not stand up and felt like I was nothing. I cried silently and he helped me stand up and said it was okay I would get better someday. I can 't describe the feeling I had but i don't want to feel it again. I am the nurse who cares and comforts people I am not supposed to need help. But i do.
My voice started to get weak in July and the muscles in my neck and face started to get weak. I went for a swallowing assessment the middle of July. I was having trouble swallowing. things would come out my nose or get stuck at the back of my throat and up into my nasal cavity. It was hard to get stuff out of there. So I took my lunch and my husband to the speech pathologist. I ate soup and some yogurt in front of him and we talked about how I could swallow better. Take smaller bites tilt forward and swallow. Also chew my food on my plate, so puree my food so I didn't have to chew it. then we did a modified barrium with food so they could see how I swallow. Quite interesting the barrium tastes awful on a muffin, banana, cookie and plain. I got to watch in fluro which is like an xray video. My score on the swallowing test was not good. I told him I was open to having a feeding tube as I did not want to aspirate (bring food or fluid into my lungs which could cause pneumonia). a couple weeks later I went in for a modified barrium swallow where they gave me barrium and what worked like pop rocks candy so they could watch how I swallow and where things go. 
Towards the middle of August--a friday again-- I tried to get ahold of a thorasic surgeon. I had spots on my lungs and my swallowing was getting worse. Being an OR nurse I felt I could at least beat the line up to see one of these guys. My first choice was going out of town on holidays next week so I called his partner. she was in the OR so I explained what was going on with me to her nurse. We were up at the lake for the week between dr visits. At 515pm the surgeon called me back. We talked for about 45 minutes and she said she would admit me on Monday to the hospital. I had to wait until after bedrounds (that where they discuss how many beds are available in the hospital who can be discharged and who needs to admit). I had an appointment for an IVIG treatment on Monday am so wouldn't be able to come to the hospital until after that. she said that would be fine. We would do a CT guided needle biopsy of the lesions in my lungs. She said I could go for a PET scan but that still wouldn't tell them what the tissue was so I opted for the biopsy. The Chest, neck, and pelvis CT I had in July showed lesions in my lungs. I had been exposed to TB as a kid. We lived in the NWT and Yukon so TB was common. In school we had mantoux testing every year and they even did chest x-rays if needed. I had a chest x-ray for my first nursing job and had calcifications in my lungs then. I figured some where  those and some new ones as well. I was positive I did not have lung cancer.
Monday we went back to the city for my IVIG treatment, I got a call from the hospital about 930 that I had a bed in the afternoon. so about 3 my husband and I headed over to the hospital to be admitted. I was admitted to the surgical floor, they weren't expecting me until later? go figure? anyway I was admitted. Noting was done Monday evening, I spent the evening with a man for a roommate. New thing in the hospital is that a bed is a bed and there is not longer rooms for men and women. the next patient gets the next open bed. So I had a man in my room. Interesting.
Tuesday morning I went down to medical imaging for my CT guided lung biopsy. So they put me on my stomache in the CT scanner and had me practice breathing regularly. Then they found the lesion they wanted to biopsy. they covered me with sterile drapes and prepped my skin, put some freezing in the skin and froze what they could. the pleural lining cannot be frozen so you have to expect the pinch and not move. i had to hold my breath and not move as they took the biopsy. It took three attempts but the third time they were able to get a biopsy from the middle of the lesion. whoo hoo!! As I was finishing I asked the tech when I could expect to have my feeding tube inserted as it gets done in this department as well. She went and asked the tech who works in that room, I was not booked and they had no record of me. so they went looking and found the req in my binder (chart). It was not booked for Tuesday. They said I had prep to do before insertion. I needed an NG tube in and some Barium put in at least 12 hours before they put the tube in. So Tuesday at 3 the teacher became the patient. I had an RN, and two LPN's come in to put an NG down. Man did that burn. It went down fairly easy but it was more uncomfortable than I had thought. Once the NG was down they put about 150mls of barium in and I was now only to have fluids. Wed I was cancelled because they had an emergency come in and I got bumped. At noon I started to have blood coming out of my NG. the tube was irritating the lining of my stomach! Then the blood turned black as it stopped actively bleeding. Yuck. Friday at 5 my friend who works in endoscopy came to visit. she said she would have me in for 0900 on Thursday. Guess what?she was right I got in Thursday morning! Thank goodness because the NG hurt worse than anything I have had before. Once the feeding tube was in I asked for the NG to come out. I told them if there were problems they could put the NG back but please take it out now! They did.