Friday, November 9, 2018

PLEASE CHECK IT OUT!

I've been so busy listing lots of items on Ebay. Please check them out when you have time. Only shipping to the US. 

All money goes toward medications and medical bills. Thanks so much!!

https://www.ebay.com/sch/maryjcal/m.html?item=323488167696&rt=nc&_trksid=p2047675.l2562


P.S. Some of my wonderful purchase feedback is due to a friend who sometimes shops on my account. The seller feedback is all me!

Tuesday, November 6, 2018

UPDATE FROM MARY

With the cold and rain making their appearance in KY has come some very painful days. Cold is bad enough. Rain is bad enough. Mix them together for the extreme kind of pain no medication seems to tackle. Then the weather yo yo's from bitter cold to warm. Another flare ensues. Has been a horrible couple of weeks for sure. 

I have my Benlysta IV infusion on Thursday. Can really tell I've run out of steam.  My joints are swollen, having fevers and chills, aching all over.  Headaches have been horrible. When you mix systemic lupus, fibromyalgia and osteoarthritis (which has spread throughout my body) you get quite a horrible concoction.  Even though the many medications I take can't stop the pain completely, or the flares for that matter, Benlysta does give me a small boost the second week after the infusion. So thankful for friends who have helped me with the extreme cost of all of these medications.

I've been trying to sell on ebay to pay for some of the medications, but as always it is hit or miss.  More miss lately.  Has been hard to type in descriptions with my finger bones and hand bones deteriorating more and more (erosive osteoarthritis). So any amount of help I received is so welcome and much needed. Thank you to those who didn't walk away. I realize people don't understand how bad all of this can be unless they experience it themselves. I'd rather think it is from not understanding than not caring. We all need someone to care. 

Thanksgiving is coming in a few weeks and Christmas is just around the corner. Not all of us have family to spend it with. In fact I've been alone for holidays for years now and it has been extremely hard.  I dread them so badly. These holidays are centered around family and if you don't have any family the depression and loss is magnified 1000 times. Just praying to hold on through another one even though I dread it so much.   There are many people like myself with no one at the holidays. Look around your neighborhood and don't forget to make a difference in their lives.  I know how they feel.

Someone had asked me what I wanted for Christmas. I don't want anything except to have enough funds to make it through the end of the year. The tons of medications I pay for deplets my minimum  income every month. It is November 6th and I'm already depleted. I won't be able to buy anything or pay for any bill until December 3rd.  It isn't the first time and won't be the last.  That is why I'm so very thankful for those who are the vessels of so many blessings.  I can't thank you enough for your much needed help. 

My hands are badly cramping as I try to type this.  Just wanted to send a short update and let you know how grateful I am for every one who remembers me in their prayers and who have helped me financially to make it through each month. 

Thank you from the bottom of my heart.

Love,

Mary

Sunday, October 28, 2018

Holding On

This month has been extremely stressful. Yes it caused many lupus flares. Who knows what damage they did! Looking back over the year I realized how overwhelming life has been for me. And doing this alone has been extremely hard. I want to give up so many times. But if I don't do it, no one else will. I'm thankful for my kitties. They give me a reason to get up in the morning. 

This past week I had another flooded kitchen. The washing machine overflowed thanks to a blocked pipe. Turns out you can't wash fleece blankets in this place because the fleece link just stops it up. When the handy man came and ran a snake down the pipe it was terribly blocked. He is coming Monday, too, just to make sure everything is alright. While he was here I had him check and replace the outlet I broke. A couple of years ago I fell over backwards out of my rocker and hit my head on the concrete wall shattering the outlet plug and causing sparks to fly. Since my dining room table sits over this outlet I had forgotten all about it. He fixed it with no problems. He said I was foolish to wait because that plug could have caused a fire. 

The weather here has been cold and rainy. The combination of the two have increased my pain to a very high level. I'm so exhausted from lack of sleep and severe pain. Lupus I HATE you!

This week I also found out the only cable company we have has gone full digital. You have to have a box (that you rent) for each tv in your home in order to see anything. That's out for me as I have two analogs only. Can't afford a new tv. Can't afford to add a box. So I'm searching for tv on the internet. There are a couple of channels, but none have the shows I enjoy. 

Had to return my Phillips Lifeline box this week. Received a letter week before saying the hospital that sponsored my service (for free to me) had been discontinued. So I called them and asked for a return label. Took several days to receive, but when I did I packed it up, put the label on and called Fed Ex to pick up. The day after they picked up I was called twice and told if I didn't return the box I would be charged $500.00. Didn't give me much time between receiving the label and having it picked up. Second call was a person. She was rude and insisted I give her the Fed Ex information to prove I was telling the truth. I will NEVER use this service again. So if I fall and can't get to the phone oh well. 

I'm sorry I haven't posted as much as I should. I'm just worn out from lupus flares. Thank you all for helping me when you did. I wouldn't have made it if you had not done so. You've made a difference in my life and have reminded me there are still good people in this world. 


Monday, October 15, 2018

Just Want To Scream!

I swear these fool doctors are gonna kill me or make me go blind faster. I've been without a cataract eye drop for two weeks now. Sent them an email, called the office only to hear we'll call you back. Today I called again. Took three tries to get them to go through. Finally after two weeks i spoke to a person. Explained my pharmacist sent an electronic request for a refill two weeks ago. Customer service representative said no one assigned it to a doctor so it was sitting in limbo. When the pharmacy sent in the request they listed the doctor's name. However it was not assigned to a doctor. I can't get through to the doctor's office, just customer service. I'm the meantime my eye pressure  is higher than it's been. I can tell because of the pain in my eyes and the blurriness of my vision in my right eye. Left eye is already gone.

Last week I was also chasing down a refill for blood pressure medication. The week before it was pain medication refills. Turns out the nurse forgot. This has happened three months in a row. Funny. I didn't need blood pressure medication until I moved here. I was without pain medication for a week.

Such an unprofessional group! I wish I was home and could see my doctors there. At least they cared and took care of me. Doctors here have been a nightmare. If I am ever financially able to move home again I'm going! Just hope I haven't lost the rest of my sight by then or that lupus has destroyed my body anymore than it already has. I'm praying for a miracle. I need to go home. Costs me almost $2000 six years ago to move i.e. Uhaul, gas and food along the way. Had a friend's brother to drive. Have no one to drive now.Then setting up deposits for apartment, utilities etc was more. I'm weaker now, have lost a lot of ability to do physical things. Have a hard time just pushing a vacuum. And I can count on one hand the people who would help me load it. Many years ago I was able to hire movers to move everything for me. Back then it cost $5000 and that move was in state. Can't begin to imagine how much it costs now. I swear I'll never move again if I could get back home. And yes it would take a miracle.

And today I received word my Lifeline won't be sponsored by Baptist Health anymore. Since I can't pay for it I had to call to cancel it. Three calls, four hour wait for them to call back and three transfers later it took awhile for them to finally cancel it. Since a Baptist Health representative brought it here, set it up and told me he would return to pick it up when I was ready to turn it in I had no return box from them or label either. Will get the label by mail sometime this week.

The Lord must have a huge blessing coming my way and I surely need it.

Am I stressed? Am I flaring? YEP!!!

Thanks for letting me vent.

Saturday, October 6, 2018

PLEASE HELP!!!!


Stress is a terrible threat to someone chronically ill. While catching up on my medications bills somehow I miss calculated and wiped out what little money I had to start with. Add in overdraft fees and I'm in bad shape. I've been adding thing in eBay , but that is a hit or miss. I've never been in this position before but I'm begging for help. This stops the payments of my medications. Personally I'd like to throw it all away. But I can't. Please help in any way you can. I'm desperate.

I have a paypal account set up for emergencies. It is address MaryJC83@aol.com. You can send money to this account.

I feel like a horrible failure since so many have helped me a long the way, but there is nothing I can do at this point but humbly ask for help. Please help!

Mary

Friday, October 5, 2018

Giveaway

Have enjoyed watching this sweet lady's posts. Hope you enjoy, too. She's doing a giveaway.

https://m.youtube.com/watch?v=mfYvAXL36qI

My desire is to have a silicone boy doll but medications and medical bills take what little money I have. They are good therapy dolls.

If you are interested, look up silicone baby dolls or reborn dolls on etsy.com or ebay.com.

https://www.ebay.com/itm/full-body-silicone-baby-boy-new-SOFTEST-SILICONE-ethan-small-boo-boos/323465041751?hash=item4b5004d757:g:GAsAAOSwnnlbfyGd

https://www.ebay.com/itm/full-body-silicone-baby-boy-new-SOFTEST-SILICONE-ethan-small-boo-boos/323465041751?hash=item4b5004d757:g:GAsAAOSwnnlbfyGd


Friday, September 28, 2018

I Need Your Help


It has been a very active lupus flare month. I've had my Benlysta treatment. Just like other months the affect of the medicine can cause a restful sleep or insomnia for two weeks. It has been a terrible two weeks. I've been confined to bed by a body that does not work, by a body that is drowning in pain where medications designed to slow it down can't control it. I was asked by my doctor if I was depressed. My reply was "Wouldn't you be?" Of course it affects my mind. It is all overwhelming at times. Add in the rapid vision loss in a year from glaucoma. So many times I've wanted to scream enough!! My doctors are all telling me there is nothing more that can be done. They are simply trying to make me comfortable which means getting the right medications to do their job. It has been a rough time with adjusting to new meds and the readjusting to new doses. It has been especially hard having to pay for one medication let alone paying again because they readjusted the dosage. This has doubled my already enormous medication bill every month where I'm having to do without something else to pay for meds. I feel like one brick after another has piled on top of me slowly crushing the small fight I have left. Pretty bad when you can't afford to buy a candy bar. One layer of stress after another. Thank you to those whose kindness has made a difference, who's prayers have provided strength, and help has chipped away at the mountain of expense suffering from this disease along with the multitude of other health problems. You care and show it. Please know how much this means to me. Please help if you can!! Important: I am on a waitlist to get into senior/disabled housing. When my slot opens I'll be required to pay deposits and first months rent. i don't have that kind of money. We're talking about $1000.00. Plus add cost for someone to move me estimating $400.00, as they charge by the hour and reserve two hour costs upfront. I cannot move myself and have no family. Cost altogether will be $1400.00. I need to get funds ready now so that I don't lose this wonderful opportunity to live in a safe, caring and much more affordable place to live. My rent will be $150 less than I pay now. Utilities will be included so that frees up $150. I would be able to manage my medications cost and medical bill more effectively. The complex has safety features to help in case of falls, of which I seem to be good at lately. There are medical staff on duty for care. They have a cafeteria, activities for residents, and provide transportation to all doctor appointment s. It is the ideal place for me. And I'm allowed two pets. Little bit and Buddy. I need a surrounding where people care, help you, keep you safe, provide medical care, and you have some one to care. A place that provides time for people not be alone. I'm alone every Christmas. I won't have to be alone at Christmas anymore The only thing that stands before me is $1400. If you can help with any small amount , I promise you every time will go to all moving expenses. Sayer Christian Village will be my final home. Please help me get there! I will be able to pay kindness forward after all is complete.