My Husband, My Life, My Love, My Family, My Cancer
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Sadly no new shoes today, they didn’t have my size in the store, ordered online instead. My feet are 11 but I’m only 5’5 barefoot, should’ve been taller I guess.
GoT was ok for an opener but dinner was awesome.
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Tanya~I hope hope hope that’s all it is for sure. I have been burning the candles at both ends for sure. There is definitely some accumulated side effects going on here. It’s enough to drive me batshit crazy. Scanning should be called torturing. That is Also what the bill should say as well ! Annoying cancer ! Ugh!
Dorimak~although the title is long of my thread. I realize this because it was Intended, everyone has a life. Everyone usually on BCO has cancer or someone touched by it. We have pets we love. We have hobbies we share. We basically counsel each other daily. You are MORE than welcome here sweet sister!
Still waiting for Gracie. Parry hello beautiful ! Goodnight ladies. Sleep well. Minnie will be waking up soon. 😄
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Mae~Here i am getting ready to go to bed and I see the FOOD!!!!! (insert shocked scary music here) da da dum! I am instantly hungry. LAtely I could eat anything. My DH made me the best steak on Thursday night and I savored every single bite. It’s just delicious. I do really enjoy eating. Maybe too much. Lol oink oink on me
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Sunset. I've been off of any TX since March 1, about six weeks. Yes, it feels so good. I did lots of deep cleaning in my house, boundless energy. I thought it would be hard when it was time to get back on TX, but it's not. Once I saw my PET report, and I'm feeling some pain from the tumors, all I can think of is taking the first pill. I'm feeling some depression too. Just the, I've done this for over two years, and now I'm right back where I started. For some reason, even though I've been off effective TX for six months, I didn't expect to feel this down about it.
This is what we do, I don't know why we aren't all " coo coo for Coaco Puffs" That's what my DD always says. LOL
I have yard work to do, my kids are coming over on Easter. I'm not fixing a whole meal, just desert but I want my house to look nice.💞
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welp just lost a long post. My luck today.
Game Of Thrones was good. Real good. But wanted more.... needed longer episode! I am heading there are only 8 or 9 episodes in this final season. I don’t want it to end. I can live in fantasy for an hour.
Very sad to hear of the Notre Dame cathedral burning. Such a shame devastation. 😞💔 🔥 🔥. ⛪️ Hope no one is hurt. Such a darn shame! 800 years old
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hi Ladies
Welcome Dorimak. You have come to the right place for good support and information. These ladies are wonderful. Good advice,for all our needs. I haven't been posting much as I seem to be busy and always trying to catch up. Micmel, busy as always. Mae, you watched GOT. I really want to keep it to the end and binge watch. I know the final battle was filmed not far from my home in Northern Ireland. They say it took 56 days to shoot, and will be the greatest battle scene ever. Please don't give me spoilers!!
How you doing Parry? Think of you often x. Also Tanya, Lynnwood, Tanya, Lynne (50's), MJH, and also all the ladies,who have joined this group. We hold each other up! I'm due a 3 month scan, but it's a bit late. Easter is big for festivals in Spain, so ther is probably a back log. Sure they will get me soon! Had our first little trip out on the boat today, just to blow,the cobwebs off. Still a bit cool, but was lovely. Tired tonight! Picture here I hope!!
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Wow Minnie, amazing self control to wait until it’s over to watch GoT. You’ll get no spoilers from me but I may express outrage if we have another “red wedding” type episode.
Not much going on here, just the gym and a cardio check up on Wednesday.
Hello to all 😀
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Hi Friends, I got to be the spouse instead of the patient today when DH had a knee procedure. (It was outpatient.). I much prefer being the person waiting to being the person getting treated or tested. Im pretty sure that’sa no brainer. I do have a short break in appointments and testing until the end of May.
Micmel, I too wonder if your back and body pains could be muscular or mechanical strain rather than cancer. You’ve done a lot of lifting and could certainly be suffering the effects of that. And with constant aches and pains it’s no wonder you’re mentally down too. I know you’ve heard this from many here, but be good to yourself and rest and take breaks when you need it. Do something you enjoy with your DH or DD.
Minnie and Divine, love your outdoor fun pics!
Mae, Micmel, and Minnie, Never got started on GoT but friends we met on our cruise last summer were so excited to tour Croatia and see some locations from the show. We docked in Sibenik and they took an extra tour of Dubrovnik and walked the walls which I think were used in the show.
Hi Tanya!
Grannax, I hope your new onc gains your confidence. Have a nice Easter dessert with your kids and hopefully a pleasant time! I’m having 7 of my family for dinner and decided to order a Honey Baked turkey breast (not sure if they’re all over or just in my area). I can handle side dishes though. I’m not a great cook, lol.
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hello ladies ~I was thinking. Has anyone seen Marianelizabeth? She hasn’t been around. Just wondering. Hoping all is well.
Rosie~ I get two days off. I desperately need it....I don’t think I’m not getting out of bed. Lol only to eat.
Minnie~love the water. You’re lovely smile. Jealous!!!
Mae~ GOT only 6 episodes for a season. I can’t accept that. It just can’t be over. Magnificent. I won’t give any spoilers. Either.
Hugs to all you special ladies.
Parry?
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phew, I'm just finally caught up reading! I also started halaven so read that whole post as well! I had a wonderful time in Colorado Springs for a full week with my son. I am wondering where the energy comes from on a vacation, but when I'm home I don't feel as good. It must just be all in the mind.
I had one week of halaven and next dose my numbers were to low to get it. I for some reason Wasnt as tired on ac as I was this first dose of halaven. It did remind me of my ibrance days, low white counts, and being so tired! I'm so jealous of all of you who are getting months and month on ibrance. I did 18 months and it was wearing me down at the end.
Dorimak- welcome to the gang. I'm not married either. I have a bf but sometimes his support sucks! He never says much and doesn't add much input. His answer is sometime I just don't know what to say. Well hells bells, say anything don't leave me sad and alone. I still cry after three years. Sometimes for no dumb reason, sometimes I feel so all alone in a cancer life. I'm pissed I'll miss so much of my children's life. I lost my dad when I was 15. My son lost his dad at 16. Now my two kids will loose their mom. What kind of sick joke is that?
Busy week getting ready for Easter. Tonight we filled almost 300 eggs for Easter egg hunt. I will be making jello eggs for about three Easter dinners. Making a few desserts and a project for the Easter table. Doctor tomorrow, work all week.
I'm waiting for warmer weather to get here and stay. We have a cabin near by and we go every weekend and a lot in the summer during the week, once school is out. There seems to be nothing greater than sitting there in the morning having a cup of coffee and being mesmerized by the lake. It's calm and quiet. It's kind of where I'd like to be at the end.
I do hope everyone has a wonderful Easter, good laughs with the family and memories are made. I get mad at myself I'm not stopping to enjoy all the good things and simple things and that I do let cancer consume my life.
Have a wonderful week!
Micmel I went to the website you posted for jewelry. I love it and now have to donate. I sure wish I could turn this evil into helping others too. I need to get my Girl Scout troop into something for a mission, like this. The cancer society here doesn't get much really for donations. I went to get a free wig and all they had were real short curly blond ones. None we're modern or cute. I did get a couple hats but nothing great.
Always thinking of all of you even if I am to busy to post.
Sarah
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micmel I found Marrianelizabeth on the death and dying thread. I told her you were looking for her.
Meanwhile I sit here ready to jump out of the starting gate. BUT, my X is still in insurance glitch mode. Grrr
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Good morning beautiful people!
Just dropping in to spread love 💜💜💜💜💗
Love and hugs,
Philly
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Good morning beautiful people!
Just dropping in to spread love 💜💜💜💜💗
Had my 2nd part of the pneumonia vaccine recommended by my very strange PCP. Man, this vaccine is a whopper! I can barely lift my arm...hurts a lot!! Sitting here having coffee and waiting for the Tylenol to kick in. Ouch! I have a massage later - hopefully that will help!
I see a resident at one of Philly's teaching hospitals for my PCP appointments. Their attending physician is the odd duck. The resident seems to have zero clue about metastatic breast cancer, nor my medications. After explaining everything to her for about 30 minutes, she examines me and then goes to find the attending. He comes in, gives a very dead fish awful handshake (nothing worse than a bad handshake- YUCK!!) and then he talks a million miles a minute and tells me he's going to adjust my antidepressant. I'm like hey!!! Slow down and what are you talking about??? I'm doing just fine on my antidepressant that I see psychiatric oncologists about and they've got my business handled. He is so weird!!! I told the resident that I'm not keen on this guys beside manner at all.
It helped me realize how much I appreciate my MO team and their respect of me, my medical background, my inner wisdom, etc.
Anyway - here's a funny for the day, hope it makes you laugh as much as it did for me!
Love and hugs,
Philly
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Hi everyone! Minnie, I love seeing you on the boat in that beautiful water!I
Philly New Name, thanks for the Beetlejuice picture!
Micmel, I hope a couple of days off will help. I'm no doctor, but I believe your aches and pains are from the hard physical work of looking after your dad and cumulative Ibrance se's too. If you can get in the tub, put Epsom salt in the water and soak. I might be able to get in the tub but I would t be able to get out.
Today is my birthday!!! Didn't think I'd see this one and now I'm greedy and want one of two more. Get on it, researchers!
Mae, your GoT dinner looks good!
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Hi All You Beautiful People
Hopefully everyone is doing ok. I'm trying to answer and update as much as I can, but I know some might fall through the cracks. To that I'm sorry I hope I can do better next time.
Philly the funny pic just perfect and fits my pessimistic side just right, lol.
Skitz Welcome home! Glad to hear you guys had a nice time I truly believe there is a big change of your surrounds & how your head space is. I am very stress at home, I greatly dislike out house/where we live + plus numerous other stuff and it seemed to affect hubby and I romantically. Whenever we go out to a hotel or our bedroom back home (it's almost like a second master at the other end of the house by itself and we are super respectful). The second we get home the heaviness sets in. You have more on your plate than I do so I only have my small window to peer from, but I'm here for you for the alone hours if you wanna talk or I know it may seem crazy, but I can be a decent listener if I know that's what's needed. Usually I'm yelling or crying alongside you figuring out how to make to world right. Anywho, 300 eggs whoa! That's a crazy amount of eggs way to go for getting so much done. Hope everything goes smooth with lost of fun and festive spirit or special for religious reasons.
Rosie, I hope DH knee is doing well and you enjoy your medical vacation of sorts, haha
Minnie such a cool shot for your pic. I'm still putting around and will update after a long needed update with everyone else. I'm so behind in how everyone is doing, but thanks for thinking of me. It really helps to know you guys are here. I'll be in your pocket for the scan so count on me Do you guys do anything for Easter usually? We did a lot of stuff as a kid and I just loooooved finding all the eggs indoors or out! Take care.
Micmel I lose my posts all the damn time and just give up. I moved to writing in the Notes app on my phone. Now I can even go back pages! It really has been helping keep up. And my sentiments exactly for GOT. We've watched from the beginning so now I'm worried the few episodes left are gonna go too fast and feel rushed...let's hope not. I got to see Notre Dame once...so amazing in intricate architecture and so incredibly sad the damage from fire. Sounds like at least the front is left and the stone in the towers so they can reconstruct with, if I read it right and things don't change, has already had quite a few hearty donations to help aide repairs. On another note I do hope you can find a way to stress less about your treatment. Worrying won't change what and when it will happen and just makes QOL less I think. Saying don't stress at all is dumb cuz I know we all do and will as it's part of the ride. I just hate to see you have more stress with so much on your plate. We need to lock you and your DH maybe in a virtual reality room and make you take a 'vacation' and you don't need to do anything too taxing while going anywhere you want! Helping yours Dad helps you, but there needs to be some compromise for you taking care of you too. If you don't take care of you then who is going to help your dad? I'm sure the nurses and ppl where he is as would be fine, but I think you would feel bad (even if you have nothing to feel bad about).
Post to cont.
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Grannax Hi
I was off of treatment 2 months before finding out it had gone stage 4 for a while and all my doctors missed the palpable breast lumps..until stage 4 was here. I knew that meant infusions, surgeries and all the fun stuff was going to start again. It was emotionally rough and I thought about whether I could or not for a real moment.I'm glad you are here to continue treatments for you and that they are working, even if the life we live on them is more like a half life that is sickly sometimes. It really can be surprising how emotionally messed you are when something happens. Even if it's something you knew was coming and thought you were ok with! Ugh it's just a lot this journey/way of life. It's sucks to go backwards though (I know is that's not it exactly, but progression seems to feel like it). Sorry there has been so much cancer to affected by cancer. It's just everywhere it seems, but the earth seems more solid ground till you jump in the ocean. That's how cancer has felt to me.
Mae at least you got a good dinner out of it
It looks yummy 😋 Dorimak welcome aboard matey
happy you feel comfortable here. These ladies are really incredible, loving, funny and just the best ladies to talk to or rant with, lol. I like a good rant and will run off on one with ya anytime Stilllivin Hi
Do you know what the nadir point is for Ibrance? That could be the off week body sores explained? It feels like I've become a doctor/dectective/hypochondriac...kind of like adding all the soda flavors...not sure I like this, but it's ok. At the same time I can be a weird person so take it all with that in mind. Hope the aches n pains are treating you better Muddling thinking of you too. Everything going ok?
Tanya how are you doing? My nana became a much more open minded and accepting person in her older age, but damn she was stubborn, more than a few mules, till the end. She lived to be in her late 70's and not only dealt with cancer 3 separate times, but had a different cancer each of the 3 times starting early in her 40's with breast (she beat), then had a rare blood cancer (she beat), last cancer she didn't beat and was some sort of stomach cancer she was never really clear the kind with us. Her way of protecting us since she knew what would happen. So yeah.
ABSunset oh no you can't lol! I'm gonna be hanging onto your ankles keeping you up here to see if there is some sort of offshoot show from GOT or who knows what could happen!!!! And here is a big one for your list
✅✅✅✅✅✅✅✅✅✅✅✅✅✅✅
Glad your break has got you feeling so good though. It's almost harder to have a break and see what like could almost be like, right!? My goodness I don't remember what waking up normal is like anymore. It's what we go through to be here.
Lynnwood Sitting in my own backyard just relaxing in some sun, some air watching my doggies play, birds chirp and hop around is what I dream of for our hopefully soon coming 'retirement home' if we can get ourselves there soon enough!
Divine looking good and great idea. Get out in the nice weather when you can
It just looks like a peaceful perfect day.Hugs to everyone even those just reading and extra for those who need it. Your not alone
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Muddling,
Happy birthday to you,
Happy birthday to you,
Happy birthday, dear Muddling,
Happy birthday to you.
It is okay to be greedy. I hope you are here celebrate many more birthdays with us!
🎈🎈🎈🎈🎈🎈🎈🎈🎈🎁🎁🎁🎁🎁🎁🎁🎉🎉🎉🎉🎉🎉🎉🎉🎉🎉
Hugs and prayers from, Lynne
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happy happy birthday Muddling!!! Have an awesome birthday full of delicious food, drink, love and laughter and whatever else you love to do! Hugs!!! Philly :-)
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So pull up some coffee or drink of choice and get comfy for this approaching update. Oh! Grab a snack too. Gotta have some sort of snack.
Most of you know it's been rough lately and that hasn't changed much. We are still battling to get the pain under control. My palliative team has me now on 15mg of Methadone every 8 hours, with Gabapentin, 30mg of Oxycodone every 4 hours, plus 3 Advil as needed. I've had to start a pill diary to manage my alarms and so my hubby and I have a feeling of some control. He needs to be able to see what's what with me too just in case of emergency. Pain still isn't under control. I feel like it would be, but it feels like they are treating cancer from weeks ago and not now. My cancer is fast and it would be interesting to do a time lapse as I feel like I can see changes every few days with my own eyes. So the pain is evolving quicker than these doctors or their knowledge. Sorry guys (to my doctors) I know you are trying, but listen to how I feel and am communicating to you! Some good news is that on this last Monday my port worked fine. No bending over backwards, coughing, standing on 1 foot touching my nose just to draw some blood. Still might need surgery to move the port to my arm...we'll see. Mostly I sleep or am in pain. I've struggled getting what I call micronaps. I'll have 2-4 during 1 text message and it makes typing take a long time (this all has been in the works since 6am with naps). We know the Gem/Cis has failed and I'm only on it as we are waiting on the results of the MRI I had yesterday. It will determine if my brain tumors are stable or gone and I can get on to this Immunotherapy trial that doesn't use the PD-L1 or 4 genes (psst like 99% of those genes are what Immunotherapy trials use so it's hard to find a -good- trial that I qualify for and is open while the angles reach out from heaven, of course trumpets & drums are playing in the background, as I sign my name away on the trial forms) so we are super hoping to get into this trial. Lately I've been noticing more frequent Neuro changes which I'm hoping the scan will show is just from radiation and not more/larger tumors. Meanwhile this chemo is killing my hair, making me vomit, no appetite (lost over 20lbs which would normally be cool), shitty blood, fatty liver (ok so this is from the pain meds, but still wouldn't be there if chemo helped kill the cancer relieving pain making meds not needed as bad), constipated diarrhea, bad sleeps, and more. Now, To update on disability/SSI. They sent me an approval letter saying I became disabled 12/2018 and even sent me a check, the. In that same letter they said I wasn't approved and next month no check. Not only that! They said this was decided because they feel like my condition will improved and they'll check in with me in 3 years. I won't have a headstone so I wonder how they will check on me. I'm going on to their office, God willing, this week to ask them just that 😡I'm afraid this will push our moving and dream 'retirement home' plans are just slipping further out of our fingers. So frustrating. Instead of quiet sounds of animals and a gentle breeze I can hear the steel processing plant working steadily, cars 24/7 and there seems to be a higher number of motorcycles owned those owners like to drive really early/late, people fighting, a dog barking (he is always barking I don't know how he keeps his voice poor dog), and then the slightly less frequent cries of babies, doors opening/closing/slamming (metal and solid door), kids running and playing or yelling at each other, and of course a myriad of other annoying goings on. I have to resign myself that I'll just retire/pass away here, though we won't stop pushing for the move as it's best not just for me and is wanted really by everyone. I'd even live by my brother who hasn't been in a drivable distance since I was a pre-teen. Big sigh. I'm hoping for the best. You never know. This weekend my sister and best friend get to take a girls trip to see the great redwoods. I'm so excited and scared about bandaging my wound and pain control. Wish me luck! I'll post pictures next week sometime. I don't leave till later this week. Hope to check back in sooner.
Hugs to everyone
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Happy Birthday Muddling! Here’s to 3,4,5 + more -cough cough- yeah researchers get on top of it already
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My old comforter was torn all over on top and the filling is just sagging into corners and doing what it wants. So I splurged and bought a new one
Too pic is the colors and lighting on my bed in real life. It came in yesterday. Despite my giving hubby a list of 5 and this being his least favorite on the list, he still took care of everything from getting the box inside to getting it on the bed and pillows. Some on the list were too expensive or out of stock so that’s part of the reason I chose this and not his #1 or #2
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Muddling, happy happy birthday my friend! 🎂🎁🎊🎉❤️
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Pary, your new comforter is gorgeous!! Just my style and the colors are so vibrant! You guys have been through so much and I hope you get your retirement home! Hang in there!
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Parry, wow that was some update! Thank you for that. It's nice to hear from you.
Happy Birthday, Muddling. Don't birthdays have a whole new meaning now? I mean...to me it's like..Let's celebrate that I made it to another one! Woohoo!
Hi to all (I'm bad at listing everyone and can only keep the last few things I read in my head at one time) LOL.....but know that I am reading and caring about you all.
And GOT was sooooo good!
ABSunset
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lost another posting. Ugh!
Parry honey so happy to see you sweet friend. I've Been thinking of you. Love the comforter. Sleep is our friend! Our sense of peace.
Happy Birthday Muddling~ 🎁💐🧁🌹🌸🦋💜 May you have a beautiful special day. And many many more ! Sweet woman. Hugs to you.
Hello lynnwood, abeautiful Grannax....Divine..Philly...Marianelizabeth....Mae....Minnie....Skitz....Stillivin..Lynne(50's)....Gracie....Rosie...Tanya...
I am a zombie today. If Ive missed anyone trust me I'll be back
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I'm getting my X delivery tomorrow, yay.
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Micmel, thanks for asking about me. I took a break and can never catch up. I am amazed at your memory as well as many others. Thanks also Grannax for getting me back. I was on the death and dying thread as I have been procrastinating about our wills and our wills and other paperwork. Part of that was because my husband does not like to talk about any of it but has agreed to the wills.
Skitzblitz what is Haleven for? I see my MO tomorrow and have questions, the main one being about Pacltaxel as I start Cycle 6 on Thursday and the protocol here in BC is 6 cycles. Not sure what will be next. I have not had any increased neuropathy but definitely am more fatigued and wobbly. We have been ding lots of gardening though I am very slow being one handed and do a lot sitting down as I have increased low back pain. I see my endocrinologist in May re Prolia. I have been reading about rebound fractures once off it which is a bot scary. I will ask her for a bone density test as it has been probably 2.5 to 3 years since the last one.
Happy birthday Muddling and yes to more of them!
Yikes, my black and white cat just started licking my bald head. That is a first though our tabby sleeps on my stomach/chest most mornings. He has always been very sensitive towards me since cancer started 7 years ago.
Parry, I have read your posts here just now and also read a post that you wrote elsewhere and it went back a long ways and described how you worked hard, waited 10 years for marriage while you got your degrees and so on. Also how rough it was for you growing up. You have been dealt the worst hands yet you do it with grace. Thank you so much. I too love your new comforter and hope your husband does in time too. Oh I forgot to mention the refusal for for disability and the absolutely appalling information they gave you. It makes me angry and I hope you're able to make them change their mind.
Marian
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Yay Grannax! Finally!!
Happy birthday Muddling!! 🌸🌺🌸🌺🌸
Parry, so glad to hear from you. That disability letter is ridiculous. I thought I had seen that MBC is an automatic disability, being a terminal diagnosis. Does anyone else know about that? Love your new comforter! I hope you can get some better pain relief soon. 💕 -
Hello all
That was some reading to catch up today.
I changed I love crazy beetle juice.
Mae your food looks delicious. I’m one of the 18% in the world who never watched GOT. My husband and I may try to figure out how to binge watch it but couldn’t figure it out as of yesterday.
Micmel happy you’re resting and had a nice steak dinner. Yummy.
Muddling Happy birthday!!!!
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Parry~ my foggy mind wanted to tell you that you need to use the terminology as “terminal". Appeal it immediately, you will get it immediately. I have Been disabled since 2013, for something entirely different. Since my diagnosis, they send me letters, I fill them out. All they need to do is look into your medical records. They always deny first off. I know someone that works in the social security admin. Appeal it. If You have any further issues. Call a place called Allsup, they are an advocacy group, just google it. They helped me tremendously. They always want to weed out the people who won't fight or challenge. You will get it. I promise. Just keep on them. It usually is automatic for this. Maybe you got a paper pusher who sucks. You'll get it.
Marianelizabeth~I never forget my friends. My foggy Brain clears once in a while. I remember most. I'm just so very glad to see you. I worry. I always loved cats. I'm allergic. Didn't know that as a kid lol. Was always sick. I remember the scratchy tongue, I lol when I read he was licking your head. Lol too funny. Welcome home my friend.
Love you my friends.
Grannax. May that madam x work wonders my darling. Bottoms up! Hugs !
I said I would be back. My mind works in cycles. Gumdoctor....cureious.... daywalker...Dodgersgirl....Pip, our new friend to the family. 🌈🌈🌹🌹
Muddling~ any good dinner for your birthday? Lately I’ve been an eating machine!
Does anyone ever just feel like let’s say having blood work done? NOT!! Someone said to me today. Why don’t you just go have bloodwork done and get it over with if you’re worried about it , you look fine. I was like 😮😮🖕 !!!! I won’t be talking to that neighbor anymore. She probably thinks I’m fine. So annoyed!
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