Life with Autoimmune Illnesses, Lupus... back sugery, dealing with chronic pain, US Pain Foundation and September Pain Awareness Month, Proclamation, family and coping

Things here are still really insane... it "seems" that my intestinal tract "maybe" improving... I hate to say that and jinx myself... but yesterday and last night and so far this morning it is much better than a week ago... but I still have Mom and her injections to deal with, I still need to get the chest X-ray.. I hope and pray that is 2nd round of antibiotics will completely rid me of the cellulitis... I found another "lump" on my right thigh a couple of days ago, and I was praying it was not more - but I am on the Rifampin and the other one (can't think of the name of the moment) LOL.. but between lack of sleep for nights and nights... and the heat, and stress, worry... my mind is about null and void anyway... Good news!! I am okay for the City Of Ennis to go ahead with the National Pain Awareness Campaign in September "Beautify in Blue"!!! Our Mayor signed the proclamation, and the man that I needed to speak with about signs, ribbons and so forth told me it was fine to go ahead and put those up for next month!! I am truly thrilled to be able to get "my home community" involved in this... even he said he suffers from migraines... so he totally gets chronic pain... I will keep you informed, make photos and post them etc as I get the stuff and get it up here in town... other than that, I HAVE TO GET WELL so I can have this back surgery... I will more than likely switch Medicare Plans for next year and that probably means I could lose my surgeon, so I have to get it done before the end of the year... all of that has been a nightmare also... to find out that my own HOSPITAL does NOT take the Medicare Advantage Plan, after I was told they did... but it is a huge ordeal and AARP should be ashamed of themselves for even sponsoring Untied Healthcare and what they have pulled on their clients... it is all over the internet how they have really messed so many of us up on our providers... I am still very concerned about Mom and all of the "memory" issues and things I've seen over the past several weeks... although I know from experience, lack of sleep, pain, new medications, stress can all be huge factors in our memories etc - it seems to be over and above all of that... anyway, I am playing catch up after being ill for so long and I am still not at my best (whatever that is anymore ) ;) just wanted to touch base with everyone and let you know I am still "alive" and not really "kicking" at the moment...

When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...

Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....


When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....

Onward to both Hips injected and my lower vertebra also injected next week...

YUCK!!! I first of all, have a very nauseated stomach and now am getting a stupid headache. It was almost like a "de-ja-vu" for me just a bit ago. I had this overwhelming feeling that I had been in that exact "space and time" before. Well, I had. Years ago, when my migraines began, it seems I would have these stupid things either on Friday or Saturday night!!! It seemed to never fail, that when Friday came and I was looking forward to either going out to dinner or dancing with friends, next thing you know, I'm headed for the ER with a very severe migraine. Most of the time, nothing would take those away, especially when I got badly nauseated also, but going in for IV fluids, some type of strong pain killer, morphine, back then they used Demerol for that type of pain. Then in a few hours it was home to hopefully keep the stupid thing at bay so I could still have a good weekend. Anyway, when I first got out of bed, my stomach was already very upset, and then the headache began to come on quickly also. And it is FRIDAY! Of course now, I am no longer able to "work" outside my home, so the circumstances are a tiny bit different. Yet, I really NEED TO GET MY MOM'S TAXES DONE!! And the plan was for me to do a few things online, then do her taxes and get that out of my way. So, I took some Promethazine, my meds for pain, etc and am trying to make sure I get my few posts in, and hopefully finish those taxes or at least get the most of them done, so I can go to the sofa for the rest of the day. I can tell this is going to be "one of those bad headaches" and my only option is on the sofa, and to remain still as possible so it will finally go away...

Also, I FINALLY HAVE THE APPOINTMENT NEXT WEEK (Well both of them) one to have both hips injected on Tuesday here by my Orthopedic surgeon. Then I have to go to Dallas next Thursday (have to be there at 7AM) not looking forward to that drive in Dallas at that time of the morning. My pain doctor finally is going to inject both sides of the last vertebra down by my tailbone. He thinks at least a portion of the horrid pain I've been having is coming from there. I have a bulge of a disc there, plus probably a great deal of inflammation which waxes and wanes so some days it hurts much worse than others. But, I feel my hips are still a part of the problem. I had them both injected about this time 2 years ago. That seemed to help, SO I am hoping I can continue to do without hip surgery. Anyway, between the both of them, I am keeping the faith for relief. Plus if those work then we know for sure, where the real problems are coming from.

BUT< what truly SUCKS! Of course Jim can't drive at all, and my Mom could never drive in Dallas at all... she barely gets back and forth from the market, bank and home here in this small town, much less Dallas traffic. Well, they will have to give me a bit of something to put me out or to the place as I used to call it (" don't give a damned medicine in my IV)... I know this routine like the back of my hand. Plus I know they "think" my husband will be there with me, to possibly drive me home. Well, he could "help" some if I needed help... BUT usually with that light of meds to put you asleep for a 10 minute procedure, you are wide awake, drinking juice or something before you go anyway. So, that is a drawback of having Jim not be able to drive, plus Mom can't and no one I know here close enough that could drive me back and forth to Dallas on a weekday... So, we are going to have to be a bit "creative" in making sure they don't see me being the one driving myself home. I know I won't have a problem at all. As I said, you really don't go out for long, and that med wears off quickly especially since I've had to go through this several times.... so that is my "hectic" schedule for next week, along with possible RAIN and Thunderstorms for the next 10 DAYS!!!


#HIPNeckSteroidinjections