My Husband, My Life, My Love, My Family, My Cancer
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Claudia have you applied for social security disability? With Stage IV you can get it. I started working at 14 and paid into soc. sec. since then. I had to be out of work for six months before I could actually get anything but I can't work at the level I was before. (I was working two jobs in January of this year), quit one job in Feb. when I started feeling sick and my back ached so bad so I couldn't do the driving. I was at the other full time job with a pillow and heating pad in my chair until I found out I had the Mets diag.
Deep sigh May God make the way easy for you guys.
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Gracie~I know having your family around means everything to you. I am shocked that your hospital wouldn't have a social worker that knows all of the programs to help their cancer patients. I love mine. I really am in shock that yours doesn't have one. They need to get one like now!! Grrrrr Is it a small hospital ? Do they even have an infusion center ? Im sorry darling! I wish we lived closer. 😞 I adore you! ~M~
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Tanya~ waving hello! Hope all is well with you and yours.! Sending hugs ! ~M~
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Micmel, no our hospital here doesn't have any infusion center or anything like that. It's basically to go to if you get the flu, or have an emergency. What they can't handle they ship to a bigger town. The next town over has an infusion center though, I didn't think about that, will check that out...thanks for that great idea!!!!
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I felt like you wrote my thoughts, feelings, words.
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Slarobinson~ Welcome to the thread, I hope that you will find some comfort in getting to build your circle of support. It's very important no matter what stage you are. I know having BC is very hard and it attacks everything about your life you felt safe about. My safety net is love.... love for my DH and family and my friends here...Mae...Claudia..Keetmom....Nan....Tanya.....Lynne's(both man and 50's) Chelle of course....NO1......Minnie...of course Gracie......Leapfrog.. If you need support or an ear just to listen, we've all been there! Rest well. Hugs~M~
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Gracie~My infusion center has a social worker, and I am not kidding I don't know what I would have done without her many months. Between constantly handing me giant food cards for help... the hospital paid up to 1000$k of my household bills every six months, because my copay were out the roof!!!!! She arranged yoga for Me, got me a wig when I needed it. Submitted my family for a fully donated thanksgiving dinner, and my family has already been picked for a Christmas adoption for cancer family. They bring us presents and mountains of gift cards so we can shop for what we need. There are some amazing programs and people out there.
It touched me so much, my DH and I made special pillows for the mastectomy patients, and donated them to the infusion centers at all three branches of the hospitals I had been too. I think in total we made over 100 pillows. In beautiful NOT pink colored pillows for women. I used mine every day for months after my mastectomy and I don't know what I would have done without them. We are making our second round now. I just got to pick out more fabric!! This does have pink. But Its a dark fushia! I want to give back when I can, because that hospital has been a blessing. Seriously look into that. It's been a blessing to me. Sorry to ramble, just wanted everyone to know what kind of help is really out there. Especially for stage four patients. We need all help we can get. Not that other stages don't need help also. It just seems in hopes that they would improve eventually, whereas, we live this way forever. Much love my friend. ~M~
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bigbhome, I’ll be downsizing in the spring, ugh, so hard, DH and I are both pack rats to some degree. We’ll be selling stuff and sorting though a 4 bdrm home for what to bring to the cabin. Happy for any tips you have.
Slarobinson, welcome.
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Mae~It sounds like everyone is downsizing. My DH and I have been getting rid of everything we don't need. Our house here is also four bedrooms. The second home is three bedrooms with a basement apartment area. Double everything. You're moving to your cabin, you're going to have to get rid of a lot of things. That's amazing. Talk about uncluttering.!! You should get some American pickers up in there ,you and Claudia, get rid of some things. I will be a little longer with the downsizing. Have to wait till the DSS graduates from high school. He is a junior now. So upon graduation, DH are renewing our commitment together, around anniversary time. This time family will be able to attend, last time the timing wasn't good for reasons family brings. Yuck! Benedict Arnolds let's just say! Have a great nights sleep everyone. Much love ~M~
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Micmel....when I say I keep going all day, don't imagine me racing around vacuuming the floor, washing windows and cooking meals, all with one hand tied behind my back! I just manage to chug along, half awake most of the time, with a little doze here and there. Trouble is if I lie down with the intention to sleep, which I crave, during the day, my muscles and bones ache so I give up. I'm always in brain fog but I believe I'm doing quite well and a lot better than I was pre-operation and pre-treatment. Back then I was in bed all afternoon and sometimes all day.
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hi everyone, even though we are all basically suffering the same type of illness, I can see that treatment and support is different all over the world. I am glad it is possible to get help, especially financially, but the most important is a listening ear. I love to hear what everyone is doing. It's good to have distractions. It's good to know that people carry on, even when we have days when you feel you can do nothing. I will get to know you all by name, but keep telling your stories of your lives. Thank you all xxx
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Off for my bone scan! Sheesh
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Life......it just keeps happening with no regard for what I'm going through. My DD just had some tests done and her Dr. says he thinks she has MS. Oh my goodness, I hope it's not true. She has to have more tests, of course. The next one is an MRI. Sometimes it shows the MS lesions but not always. All this is complicated by the fact that she has a rare disorder called pseudo tumor cerebri. It's a not well understood disorder where the ventricles in the brain do not distribute the cerebral spinal fluid properly. Therefore, the fluid builds up and causes severe headaches and damage to the optic nerve. She's been dealing with this for over 20 years. She has a shunt that is supposed to regulate the build up of CSF.
About a month ago, she started having some new problems with her vision. after many visits with her neuropthalmologist, he ordered a lumbar puncture. She's had many of these, but this time the labs on the spinal fluid showed too much protein. He had his nurse call her to say that he thinks she has MS. She was devastated. He would not elaborate at yesterday's appointment, just ordered the MRI. Obviously, communication is not his strong suit.
They have done some research and know that there's obviously something wrong. But, the other possibilities are Lupus and Sarcoidosis. There's one lab that is not elevated, that should be if it's MS. So, lots of confusion.
If anyone on this thread that knows something more about MS, please let me know. I don't know for sure which labs are elevated, but I think IGG and MS ?
She's only 45 and has already been dealing with so much. Thankfully, she lives only ten minutes away and her husband is amazing. They have no children. This situation is all consuming for me today.
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Grannax, I am so sorry that your DD is going through so much right now. I know how worried and concerned you must be. I do know some people who have MS, but I know nothing about blood tests and labs used for the diagnosis. My dh's cousin has had MS for many, many years. It is well-controlled, and she has been fortunate enough to have experienced no aggressively rapid progression. She still works full-time in a hospital ER and is self-sufficient. I am telling you about her to give you hope since MS is often not the rapidly debilitating disease that many of us think it is. There have been some research breakthroughs, and there are new medications available. I know this information will not relieve your fear or stress, but I hope it gives you some hope to hold onto. I am glad that your dd has such an amazing husband (and an equally amazing mom) to support her. I am praying for you and your dd. Bigs hugs for you!
Hugs and prayers from, Lynne
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Gracie~I am with you holding your hand my sweet friend. We are here waiting to hear from you. I know you'll have a wait. I'm so sorry that this disease has such control over our lives ! I literally just woke up and it's 11:39 am. I did go to bed later than I'd like. Sometimes the eyes just won't shut. I know you all know about it. I am with you in your pocket. I'm hugging you right now!! Much love ❤️
~M~
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Thank you, 50'sgirl. It does help to know that there are people doing well with MS. I know two people, each with opposite responses. Luckily, my DD has a good friend who also has MS. She's already been on the phone with her. My biggest concern right now, is for her to get a firm DX. As soon as she knows for sure what she's dealing with, she and her husband will be in a better place. We all know, with MBC, it's easier once there is a treatment plan in place.
I am totally focused on her right now, but fortunately we have a musical to attend tonight. That should be a happy diversion, to watch my granddaughter, her niece perform in a Christmas play.🎄👧🎶🎵🎼
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Minnie~we are so glad you're here, it is like my home away from home. I think Spain is so beautiful, my grandmother was born there! She had such a thick Spanish accent, I could barely speak to her when I was little. Now she's gone and it's sad I can barely remember ever having a full conversation with her. She had such broken English. A dream of mine was to be able to venture back to her place of birth and see the historical things that she endured and lived through as a young child in a large family. It seems most families that are started in Spain always seem to have large families. Is that true as you know it ? I remember stories of other families with like 7 or 8 kids was just normal then. Unlike now. I am so glad you found us! We need to support each other ! Let us be part of your distraction! Hugs for Minnie! 🌹🌹
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Sleep is super important to me and was difficult with steroids but without them, I use an app called “headspace” for some 3 minute breathing meditation techniques and I listen to thunder sounds, I’m usually asleep in 5 minutes. Worth a try, maybe.
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Grannax~ my father in law had MS when I was married to my X. He was diagnosed over 50 years ago and back then, they didn't have treatments or much of medication to treat the natural Progression of the disease. As he grew worse the doctors everytime would tell us, it's such a shame that he wasn't diagnosed In these better informed days. They have treatments in place, good ones. From what I've read the path your doctor is taking is the correct one. MRI, Spinal tap (lumbar puncture) is correct. They soon may ask for an electronic testing to test the nerve functions from the brain. That is also normal. It seems like her doctors have her on the correct track. This disease is not like it used to be. I do know that it can be highly aggravated by stress! Hopefully her sweet DH you speak of, can be her rock. I have also read it's a process of elimination to rule out other things, because MS can be tricky to diagnose. She is younger and has that on her side as well! One of the first things all my doctors said to me when I was diagnosed, youth plays a big part in healing from anything. Your love and support. Is so meaningful, there are no words. It does sound like her doctors are on the ball in figuring this all out! Please enjoy the performance tonight. Be your proud grandmother self.! Take in every single moment!! We will Be thinking of you and the memories you'll be making ! Sending good strong vibes to DD as well! Hugs to you my friend! Much love ~M~
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50's~you're always such a thoughtful kind person when I read your responses, I am so happy you have found our thread. You certainly bring a lot to us here. I am thrilled to call you friend. You're always so positive and you have such compassion and kindness. I am sending you a big hug! Much love ~M~🌹
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Mae~ ok this is getting creepy lol. I think we are a lot alike. I love love thunderstorms and rain. Thank you very much for that suggestion. Usually a fan is all I need but, who really knows who this body belongs to anyway because it surely isn't mine!! Hope you have a great day and make your step goal! Which I Am sure you will! Hugs to you sweet friend. Much love ~M~
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Grannax - I am so sorry to hear about your Dd. I know little about MS, except an acquaintance of mine has a daughter who has it. She is around 30, a single mother and she takes no medicine. She treats hers completely holistically. She eats a special diet, excercises and she has been doing well for years. That's all I know. I do know stress exacerbates symptoms, and a good support system is crucial. It sounds like your daughter has the support system covered. There is nothing better than grandkids to get you smiling and happy! Have fun tonight!
Mae - Stepson talked about us coming and helping to retile the floor in their new house. They live in Katy. I wish I could sleep like you. They have companies here that will come in and price things and then have an estate sale. They get a percentage of the sales, but they do all the work. I am thinking we might go that way. It would certainly be the easiest and less stressful way. You might want to talk to a consignment shop about your furnishings and lamps and things. Sell the little items at a garage sale. Good luck, this is not going to be easy on us.
Leapfrog - Your description of what happens to you when you try to nap, was so spot on to what happens to me, it was eery! It really freaked me out! Don't you just hate it! You need to sleep, you want to sleep and your body just starts twitching like crazy! Its so frustrating!
Hugs and prayers,
Claudia
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Grannax, I am so sorry to hear your news....not the kind of thing any of us ever want to hear! Prayers for your family!
Mel, thank you
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Claudia ~ I hope the process is smooth for you and you get your things moved to where they will be treated well,and you can downsize to your needed size in furniture and belongings! It's a big deal when you realize your decisions and start to move In the right direction! It's a very exciting thing, less to take care of and clean! My house is a pretty good size and its too much for me to clean all the time! I admire you and wish you nothing but happiness! Much love ~M~
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Gracie~ so glad you're home and safe. I know the wait begins, but the scan is over. Try not to think about it, I know that is hard to do, but lean on us whenever you need. You know I am a phone call away! Love you my friend ~M~
Today I decorated the tree half way! I'll finish tomorrow I suppose, but we need to move outside and decorate outside. Which is a huge deal! But.... there is always a but right!???? I was moving back a few steps and my dogs (who every second, have to Be with me, near me, next to me , watching me,you get the point) and fell over both the dogs, falling straight down onto my lymphedema arm. Can you say pain? Swelling? And More pain?
I am also decorating and I look at my hound dog and there he is peeing on the tree! I couldn't believe it! Does anyone else have this problem??! I mean if it's not one thing, it's another !! arghhh!!! Much love ~M~
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bigbhome, I live out near Katy, let me know if/when you come out. I know a few good lunch spots, if your stepson isn’t working you all too hard, lol
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oh gosh Mel! You did not need a fall!!! Praying tomorrow it’s tons better!!!
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Mel I am praying for you! Think positive. I know it's hard, but how the fear can help......
A lot of hugs
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Grace, prayers and big hugs for you
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Tanya~ I know what you mean about about working. I think sometimes people choose to continue working! I don't know how they can do it. It really amazes me. Gives new meaning to the word strong. Am I the only one that breaks out in a red faced heat flash on occasion? I mean I can't imagine being that hot and warm and being at work. It's just amazing to me. When I need to lay down. Clear the path, cause I Am laying down ! It's just the way it is! I agree Claudia, if you haven't applied, do it! Much love to all ~M~
Blue~ thank you for your support for our sister Gracie! She's pretty amazing. Rest well. ~M~
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