Announcement

Collapse
No announcement yet.

What's happening? Part 3

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Well it's been a while. Time for a check in. Things are going well. I can say that because I have been having good days for a change. I no longer live under the gray cloud of 240 mg of Latuda a day. I am down to the last 20 which I plan to get off but due to my dyskinesia I am terrified. Doc wants me to titrate down to 20mg every other day for a couple weeks then every three days until I am off. I want to titrate down by 3mg at a time over months period. He tells me it doesn't work that way. So for now I am taking my dose in the morning on an empty stomach, it is supposed to be taken with at least 375 calories in your stomach to properly activate it so I was taking it with dinner. So for now I am getting minimal effect, as soon as I get up the nerve I will start the every other day method.

    I am finishing up week two of the TMS. It is a strange experience. The tech is wonderful and is always sending me great videos for mental health and inspiration. Everyone is very nice. So for now I have about 7 weeks to go. I think it is five days a week for five weeks then we titrate down. Honestly, I can't tell if it is working or if being off the Latuda has helped but quite frankly I feel fabulous. Maybe a combo. Maybe psychological. Who cares at this point.

    So five days a week I have TMS then two of those days I go from there to PT for my back. I have been relying on medical transport through my insurance as my van is down. So far this year I have had an EEG, brain MRI, Mammogram, lung CT scan, one of those Cologuard home tests, and will be getting a Lumbar/Sacral MRI because it has been a couple of years and I will be starting back injections again which I can't wait for. All my testing so far has come back good. Only thing is my blood sugar levels are high. I am slipping into diabetes. She just prescribed Metformin for me. This terrifies me also. We have cut back on so much since I started getting higher levels but it doesn't seem to be having an effect. I know it is carb consumption. Potatoes, pasta, bread seems to be a major meal staple here. I have even cut back on the bread and we buy 15 grain bread that has whole seeds and stuff in it. Also have quite a bit of processed food. All bad.

    Brandon has been living with me. HIs grandmother is not coming home from the nursing home. Now they are suing her because her insurance no longer pays for her stay so she owes. The house will go back to the bank, probably the car has a small amount left to pay off to be owned, which was supposed to have been left to Brandon, and all her belongings up for sale soon. It's all very sad. He is a changed person. I do not mind him being here and we get along fantastically. I guess we have both changed in the last 6 years which is how long it has been since he stayed with me last. We constantly butted heads. Now we get along great, we have both let some things go. He has matured, struggling to get his life on track but seems to have a tendency for bad luck. He has taken the initiative and asked for meds for his anxiety and sleep. He has never slept good, not even as a child. Now with some Seroquel he is sleeping great. He adores his job. He just needs to be able to save for a place to live where they allow pets because he has his grandmother's senior cat Lucy. My last foster was adopted and my foster room was open so that is where she is. She does not get along with other cats so that is where she will have to stay.

    Well my transport will be here any minute. There is more so I may be back soon.

    Comment


      ((((((Chris)))))) ~

      Wow! This says everything I wanted to hear from you!

      quite frankly I feel fabulous
      Keep up the good work on titrating Latuda. You can do it. It sounds like you are having great success with TMS. Now, it seems you need to focus on your diet to reduce your carbs. I know that is difficult.

      You have had quite a bit of testing, and it must be reassuring that the results are good.

      How wonderful that you and Brandon are getting along so well. That road you traveled is behind you now. Look forward to the future.

      I'm anticipating your next installment. I am so happy for you!

      Love & Light,

      ❤️❤️❤️❤️

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

      Comment


        Chris - that's GREAT. It's so nice to hear you are doing so well. I'll be praying that continues.

        Comment


          hell -i have little to say i guess

          hello i mean

          Comment


            Hello Clouds, I hope you are well and that it is not too hot where you are. I know you have mentioned it at some point in time but I don't brain well anymore. I hope you don't leave us.

            Comment


              hello i guess its been a month--feel tired tonight

              Comment


                few weeks ago i was very weak or sick with dry mouth.maybe it was covid,now im over it i guess...i didnt even try to call a doctor,one reason is i guess they dont like me and i dont like the new modern "ways of healing"

                Comment


                  Hey all, hope everyone is well. I am getting ready to take myself outside and get some stuff done. The dog fenced area needs a whacking, have to whack it cause my little push mower has decided it does not want to start. I am sure it needs an overhaul. Ages since spark plug and filter have been even looked at, it is rigged because the cable is not the right length, my bad, plus it often gets left out in the Michigan weather. I have the rider but it is kind of big and the fenced area is kind of smallish with a tree and a picnic table. Lots of debris all over the yard that needs to be picked up before I can do a proper mowing again. Every time we have a windy day or thunderstorms I wind up with a lot of debris in my woody areas.

                  Today is our doxie's birthday, Dash is 10 today. It hardly seems possible. Kind of makes me sad. He is just as spirited as when he was a pup. That kind of worries me because he jumps around and I know their backs have a tendency to have issues and I am afraid he will injure himself. Skyler, who is 13, uses stairs cause he can't jump up. We are going to have to graduate to a ramp because his stairs are becoming too steep for him to climb down them. He has fallen off the side of them a couple of times while climbing up so I have even considered getting something with sides.

                  Brandon is still here, trying to save for a place is hard, and rental prices here have skyrocketed, even for a mobile home rentals. Plus he has the cat and she has to be able to go wherever he goes. She cannot stay with me. She is an only kitty, kitty and I have four. She avoids dogs but use to have a doggy sister.

                  Getting back injections finally, it has been a few years, first set of two then ablations. L4-S2 on both sides. I get knocked out when they do them so someone has to go with me. I make my son lol. All my heart testing says my heart is working at and above 'normal'. My lung scan was clear, clean mammogram. They are no longer making me do yearly paps, I think she said they are doing it every three years now. Now I have to deal with a high blood sugar count and my A1C has gone up two points. We have cut back on the cakes and donuts and cookies, and haven't been buying freezer meals, I have been making dinner every night but it isn't going down much. My sugar levels have been fluctuating between 125 and 145 at home which I know is high but when I had testing done at doc's it came back over 170. I am sure I will be hearing about it during my telehealth at the end of the week. I wonder if I ate something sweet the night before. I said I cut back, not totally quit LOL. I just rediscovered that smoking can contribute to diabetes. Seems like I knew that in the back of my mind but the info did not apply to me at the time. Unfortunately, diabetes is in the family, both my mom and my grandma had it. I need to quit smoking. Was told TMS can help with cravings. I still have nicotine gum. They won't consider dropping my blood pressure meds until I quit smoking. UGH!! I am due to try. It has been two years since my last attempt. I may have to wait until Brandon moves out because he smokes.

                  My TMS has been put on hold, I am over 20 sessions in. It seems to be holding even though it has been two weeks since I had a session. They are having issues finding knowledgeable staffing. They are based over an hour from me and their main tech has some issues and has had to take some time off. There is very little formal training for TMS. They said in Michigan most of the 'techs' only got training on how to use the machine and mapping. There is so much more to it than that.

                  I am titrating off the last of my Latuda, took me a while to get up the nerve and my psych was really no help there. Soooo I am cutting my pills and removing about 3mg from each tablet in the morning. It is painstaking but I feel it is necessary. I will cut back another three in about two months. I still have dyskinesia but it is not as bad as it was. Most days are better than others. Hoping that it totally disappears when the Latuda has been gone for a while.

                  It is getting cooler here already, I am looking forward to fall. I love it.

                  I hope everybody is doing well. just figured I would check in.

                  Comment


                    When you mentioned your little push mower, I was about to recommend a drop or two of oil, but then I realized you weren't talking about the only type of lawnmower I know anything about, which is the kind you push without any fuel. I really go way back in time. But those lawnmowers were simple. About the only thing that was ever needed was wiping off the blades and occasional oil. And you felt as if you'd had a workout after operating it but a person doesn't always want to have a workout.

                    Sounds as if you keep really busy with pets and yard work. Thanks for checking in! It would be nice to hear from others who haven't checked in for a while but this place goes on, regardless.
                    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                    Comment


                      if i had covid i survived it

                      Comment


                        merry Christmas 2022

                        Comment


                          Woo Hoo, 2023, I have hope for this year. My Christmas was mellow, I did the bare minimum and it was good enough. Only me and my boys. I missed my brother sort of. I had been texting him for like two weeks before and while normally he would answer me when he had time I had sent maybe 6 texts out that went unanswered. None were an exact invite but we always spend holidays together. He did stop by at the end of dinner and passed out gifts, opened his (he is the only brother I buy for) gifts. I was really happy that he liked them, he can afford to buy whatever he wants so I have to think out of the box for him and I don't have the money to buy him expensive things. When he got here I gave him a huge hug and asked him to please not ignore my texts. I don't text a lot. I almost cried. He was on his way to do Christmas with my other brother which was all good. I know my other brother's girlfriend finally left him so I think he was doing Christmas mostly alone. As for my other other brother I didn't ask, I imagine he had already stopped by there.

                          New Years was mellow too, Brandon went to a friend's birthday/New Years' party and came home sick as a dog on New Year's day. He has major issues with his stomach and intestines that has never been looked into as an adult, so he has to be careful what and how much he eats. 4 beers did not agree. So I put the bacon cheese dogs on hold until Monday. I was actually up until midnight this year. My hours have changed. Where I was getting up at 6 in the morning and being asleep by 10:30 not I go to bed about 7/7:30 ( I am done for the day at this time) and watch TV until about midnight. Now I sleep until about 9ish. I don't nap anymore.

                          Sooo my new thing going into this year is cleaning, decluttering, and minimizing. Not always in that order. I started out getting rid of some clothes and a couple other things on FB and on FB Marketplace. I have sold a few things that were worth it but I am purging. I have taken out a complete set for cooking, pots, pans, kitchen utensils, appliances I got for gifts that I do not use. I have given away about 15-20 bags and boxes of stuff. It is amazing. I started with my kitchen after watching a video on minimalism that gave me permission to get rid of things. The kitchen was a huge source of anxiety and depression because I had too much to manage and was not doing a good job of it. So.....it went to an outreach charity that has 10 families it is caring for right now. My dishes are never piled up. It is a joy to be in the kitchen. I still have two junk drawers and a lower cabinet that is kind of blocked in right now. I think almost every thing there I am keeping. I try to do dishes every day but even if I miss one day it takes less than 15 minutes to take care of. I fill the sink with hot water just before I am ready to start dinner, put in the couple dishes and then while I am making dinner I wash those and any prep dishes plus wipe down counters so that all that is dirty when I get up is the pan cooked in, a kitchen utensil and maybe a glass or two. We each have our own set of dishware we are responsible for plus I have paper plates. I hate that but it is worth my peace of mind. It is glorious. I cried when I told my therapist. Absolutely glorious. I want to feel that way about the rest of my house.

                          I did a thing.......I joined a group called "Take Your House Back" and started their course. These three wonderful, experienced, reformed slobs created the course for people like me who have too much stuff and have no clue how to manage it. Stuff and clutter that weighs on us and is a huge source of stress. Tips, tricks, ideas, plans, videos, blogs, social media groups, training videos both in their private groups and public Youtube group. The course is not free and I almost cried when I saw how much it normally is, BUT......it was on sale with a huge savings and when I got down the page they offered payment plans that I can afford. So it is 3 payments of about $33 then a $10 maintenance fee for every year after that. I am addicted. Every day I find things to throw away, and I keep a box constantly going for donations. If I think I can sell it I put it on FB MP. I have not requested that the boys do anything about their areas yet. I am hoping that they can see how much this affects me and their surroundings and hope it rubs off. If not I will nudge here and there.

                          So far the TMS seems to be sticking with me. I am not cured. I still have bouts of anxiety and depression but they are less often and less intense. I will take that. I am titrating off of my Latuda but my Dyskinesia becomes activated so I am stuck at 10mg of Latuda. My psych has been no help. He says my insurance does not pay for any special formulary prescriptions like what I would need for Latuda. I joined a couple of groups, Dyskinesia, Antipsychotic Support Group, and TMS group. I have been getting help there regarding my titrating down. Looks like I need less of a cutback over a longer period of time. As soon as I dropped down to 10mg my Dyskinesia became very active so I went into my groups for advice so, for now, I am going to stay where I am at and when it lessens I will consider going down 10%.

                          My son's kitty is still in my foster room. When she is gone I will decide whether I want to continue to foster or if I am going to turn it back into my craft room. Everything is there it just needs to be gone through. I am going to have to let some crafts go. I have a ridiculous amount of my grandmother's knitting stuff. I am not a knitter. I can, a little but not enough to warrant keeping two dozen pairs of knitting needles and all the little things that go with them. I don't have any transportation so fostering becomes a hassle. We'll see.

                          Well, I just wanted to check in, it has been a while I know. Y'all know I could go on and on but I think that is enough for now. I surely miss everyone so much and it really makes me sad that so many are gone and we can't seem to keep new. I will keep checking in for as long as we can. I hope you all have a wonderful year and thank you all for being such good friends all these years. Wow I have been here over 20 years.




                          Comment


                            I didn't know about Amazon Marketplace until I read your post. I'm really glad to know about it because I might be trying to get rid of some more things, and my experience with craigslist was quite a while ago but I recall that it wasn't as easy to use as the Amazon setup.

                            I can really sympathize with wanting to get rid of clutter. I keep trying to pare my belongings down. I recently got rid of a box of fabric scraps I'd saved from the days when I was playing around with quilting, which I haven't done in many years.

                            About the knitting stuff--you don't knit, but maybe you'd like to crochet? I got rid of all knitting needles a while back when I realized that I just wasn't going to knit any more. It's too hard on my arms but I do still crochet. Someone would be glad to have all of those knitting needles. They seem to be indestructible.

                            I agree that creating space is a glorious feeling. One problem is that once I've created some space, it tends to fill up....

                            Good luck with your decluttering! Getting the other people in the household to clutter might be a challenge but at least you're doing your part.
                            SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                            Comment


                              i been reading cheery books--heres a chapter

                              Only registered and activated users can see links., Click Here To Register...
                              Last edited by clouds z; 01-07-2023, 09:03 AM.

                              Comment


                                I've read several Jack London works but not The People of the Abyss. It sounds interesting--is it?
                                SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatopa (glatiramer acetate = Copaxone) 12/20 - 3/19/24.

                                Comment

                                Working...
                                X