I feel like there is so much to say tonight but don’t think there is any way I will get it all down.  What parts do I edit and still give an honest account of where I am at with things? I will do my best and apologize if parts seem hard to follow…

Living with Multiple Sclerosis

It has been at least 3 weeks now that my health has continued to deteriorate
considerably. I feel like this deterioration has been speeding up over the last
couple days and am increasingly scared. I have tried, repeatedly to bring this
to the attention of my family doctor, to no avail as I worry that it is happening without any doctor following along.

I am, it feels, going down a river, without a paddle as they say, and the current continues to get stronger yet the people waving from shore seem not to notice… At this point I don’t even expect to be thrown an oar, just a lifevest would do, something to ensure I don’t completely go under without hope of coming to the surface again.

Again today, I tried to speak to my doctor of my condition. Explain the level of pain I am currently living with. I have asked for 2 consecutive days to start a
course of steroids and I fear that he will, when faced with this request in a more insistent manner, try to refuse and I am not completely informed as to my rights when it comes to the course of treatment which is decided upon.Currently there is NO treatment…

July 16^th I had 2 telehealth appointments. one with a pain specialist, we’ll call him Doctor PS (acronym), and the other with a neurologist who is labeled as an MS specialist I think but this seems quite a stretch when you hear his opinions on things. How about I call him Dr.OOD (out-of-date). My family doctor sat in on both appointments as did my driver/patient advocate, Vickie.
At the end of that day, although frustrated at having wasted time in the 2^nd appointment – to say Dr. OOD had nothing to offer feels like putting it mildly. He enjoyed his own voice a great deal, to the point that even my family doctor could not get a single word in edgewise. He had absolute nothing to offer except criticism for my enthusiasm in regards to the morning’s telehealth; when I tried to explain that we were now at long last, speaking with a pain specialist

—————————————————— I must at this point interrupt to point out that the pain in the bones of my legs, arms, hands, feet like steel rods being shoved up the bones crushing everything in their path. The pain in my joints, like seering, stabbing dull sword is more than I can bear. I am having a great deal of difficulty typing as it is very painful, also because I am crying quite and this is making it difficult to see. I must pray as I type, begging the Lord that he open my eyes to some possibility I have not seen for how to get this under control. Lloyd has friends over who are sleeping in the camper and so I do not want to interrupt especially not knowing how long it could possibly take at the hospital as there is  locum on who will not see me and without my family doc being on call or having left specific instructions regarding how to contact him (I do believe that had he heard the level of distress I am in, the need to be available for phone contact would have been obvious but again, he has not seemed able to hear for sometime now, where the multiple sclerosis is at. I need to pause now, must ask Lloyd to interrupt his fun after all as I can no longer handle this pain, please pray that a nurse will understand this is inhumaine and call for some change in medication or something, I need to be trying something to help or else where does that leave me? this is not humane, I have, just now returned from the hospital where the nurse was in fact able to contact my doctor who decided to refuse even trying to switch to the SAME dose of another injection which has also worked in the past (morphine) I suggested this as it is recommended when dealing with opioid injections for pain that to help avoid dependance issues, a patient be switched between types so it should have served TWO purposes as my doctor has claimed to b concerned (and I had no reason to doubt he was sincere) in regards to dependance. Now though I must wonder as why would he refuse something that cn help prevent this and possibly offer me, even if slight, a increase in relief from this excrutiating pain. I feel nauxious from bearing it. I have disturbed th kids with my crying and moaning. Going to the hospital is so difficult, having to get to the cab, then to the hospital, and this time to the bank machine as well for cab fare (and of course the cabbie charged me for the stop – i couldn’t believe it, it’s not like there was another cab waiting, maybe next time I would do better to just explain once home that I must go in the morning and apologize for the incovenience. I don’t think I can send Lloyd to his friends wake & funeral, I’ve just spent too much on cab’s these past weeks and the well is dry.     so the doctor refused to try an equal dose of morphine and the trip to the hospital was just another slap in the face. told again that I have no right to expect that my doctor will react when my condition changes and I am in increased pain (WHY HAS HE NOT EVEN BEEN WILLING TO CHECK MY HANDS WHOSE JOINTS ARE SO SWOLLEN I CAN NO LONGER MAKE A FIST??? Lord, God, I pray for some relief from this pain. I need to establish my right to directing how I will battle this illness as it is me who suffers the consequences of his refusals . HOW DID HE NOT THINK THE FACT THAT TH PHARMACY DID NOT HAVE THE MEDICATION WHICH THE PAIN SPECIALIST PRESCRIBED should mean he would re-assess his refusal to treat my pain???———————————————————–