Barbara Dye Mrs. Barbara Dye

First post: May 5, 2016 Latest post: Feb 11, 2017
Welcome to Barbara's CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Many of you may be asking how we got here. Maybe you didn't even know mom had been sick. Well here are a few of the details to get you caught up, although it will most likely leave you as dumbfounded as we are.
In January mom began experiencing pain in her right arm/shoulder area. Her general physician had warned of arthritis and frozen shoulder and suggested she move it or lose it basically... with regards to her range of motion. As it progressed she visited a Chiropractor. She was told that he could help her but it would take some time to accomplish what an Orthopaedist could do much quicker with shots and other things. By their wedding anniversary on February 10th she couldn't move her right arm at all. She remarked that they couldn't go to dinner to celebrate because she couldn't feed herself. Sometime later she had an appointment with the orthopedic doctor. He referred her on to physical therapy. After a couple of visits, the physical therapist sent her back saying he was afraid he might make things worse instead of better since they really didn't know what they were dealing with. If my memory serves me, the ortho dr. had ordered a few tests/scans during this span of time, and at some point admitted that he would love to be able to tell them what was wrong and how to fix it but he really didn't know. He was going to refer her onto the Neurologist. As you can imagine each of these visits end up being about a week apart at least, so time is ticking away slowly, and now mom's left arm is also completely immobile which baffles everyone. There is no explanation as to how something could affect both arms so similarly at almost the same time. Her appetite begins to decrease drastically. Her voice is getting weaker and she remarks she is in pain constantly. She doesn't want to take the pain medication because of the groggy feeling it gives her. She can't sleep, and sits hunched over, almost literally laying her head on her knees. Dad and Aimee are forced to feed her, lift her, dress her etc. All the while more and more dr. visits are scheduled, more and more blood is drawn, more and more tests are ran. Mom is certain she has cancer, but the tests come back negative. A nerve study is done and reveals everything is fine. Tests determine she does not have ALS, MS or Myestania Gravis. She is relieved, but unfortunately still in pain and still doesn't know why. The neurologist suggests a muscle biopsy to look for muscle disease. Aimee questions why they want to cut into something they haven't looked at yet. No X-ray, no ultra sound, no MRI. Seeing how mom's description of the pain in her arm is that it feels detached, like something has pulled away. Could it possible be that the muscle has detached? He agrees it would be worth a look and schedules her for an ultrasound of her arms.... You guessed it ....several days later. So, more trips back and forth, in the car, without being able to stand or walk on her own. Only then to get to the appointment to find out THEY DONT DO THOSE TYPES OF ULTRASOUNDS! A call to the Neurologist to inform them of this new development results in the dr. suggesting they move forward with the muscle biopsy. We are now referred to a general surgeon. However, before that appointment mom has an appointment with her general physician again. While mom, dad and Aimee are in the room speaking with the nurse somewhere in the 2 hours they ALWAYS have to wait to see each and every dr., the nurse comments..."I wonder why he hasn't ordered an MRI yet?" She quickly retracts and asks them not to tell the dr. she said that. (haha she says 😳) Aimee very 'eloquently' proceeded to explain that the nurse had best prepare the doctor before he came into the room by letting him know that they wanted an order for an MRI, a prescription for meds to sedate mom for the MRI..... as well as something for her depression that had yet to be addressed....and furthermore....they weren't leaving til they had every. last. one. of. those! If you know my sister... you know they left with EVERY LAST ONE! 😄 (She always did get everything she wanted!)😂 
The muscle biopsy was done on Tuesday April 26th. The MRI was scheduled for Monday May 2nd. The results of both would be back by Tuesday May 3rd. Aimee, Dad and I unanimously agreed on Monday evening (2nd) that it was time we needed to get her to the hospital ourselves. She was deteriorating rapidly. So around noon on Tuesday we called the ambulance for her. Upon arrival in the ER, tests and scans were done. Lots and lots of blood was drawn. Things were complicated because they couldn't take her blood pressure on the right arm due to the stitches in her bicep (and thigh) from the biopsy. Her skin was so thin the IV wouldn't stay put. It was hard to find a vein and when they did, it rolled. They couldn't move her arms without sending her into a shock of pain. They decide to take her blood pressure on her ankle, which also results in cries of pain.... but they were left with no choice. Within a couple hours of arriving in the ER, a doctor informs us of the broken arm(s) and the fact that it appears things are pointing towards multiple myeloma. As much as we were dumbfounded to hear this diagnosis it seemed the doctors and nurses were as well that we had no idea. Although it definitely wasn't something we wanted to hear, it gave us something tangible, something as a cause, to know what we were fighting and to work towards how we could make it better for her. Now we look back at what might have been other "signs". In late summer of last year she complained of a pain in her chest and back. We thought maybe a broken rib, maybe her gallbladder. That pain bothered her for several months, but by Christmas it wasn't as persistent. She's had many other issues that could possibly be attributed to this horrible disease....we may never know. I asked the Oncologist if he were to make an educated guess as to how long she may have had this by what he sees of her deterioration at this point, he remarked 10 years. Dad then asked, are you saying we may have gotten her here in the nick of time? He said yes, I don't think she would have made it another week at home.😔
P.S. The results of the muscle biopsy and MRI both came back. No muscle disease and torn rotator cuffs. She was already admitted to the hospital at this point. You can imagine our elation that she had nothing to worry about from their tests! If you detect sarcasm in my voice, you are correct!😆🤔🤓😤😡

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