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The Cost of Being Ill  

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john68
(@john68)
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10/12/2018 4:46 pm  

Hi Folks, Illness is one event in life we cant really plan for, well may be partly as some insurance policies can taken out when starting work or may be the company you work for has some health plan for workers. I know from my own experience I was off work mainly for a year. I am self employed and in some ways it had advantages as I could make plans directly but on the other hand I had to turn down work. Many with a chronic illness have the added problems with bills to be paid and added costs plus the down turn in income. We all come from different countries and our systems will have different types of aid for sickness which may be claimed short or long term. The problem with these can be knowing what you are entitled to and how to claim. Its like any problem ask and don't be afraid to keep asking. Their are agencies that offer free advice and form filling services. I know another factor that can be a problem and that's "Pride" the fact we don't want to ask for help! These systems are their for help and that's part of why you have been paying Tax! Being ill is hard enough so take and seek help.

ileostomy 31st August 1994 for Crohns


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LK
 LK
(@dlkfiretruck)
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13/12/2018 1:09 am  

It sure can be expensive, and with only one of two working even the cost of gas for the car is counted in here. As a widow, a very limited budget, all the extras that are not covered also make a big dent. This is a very good point John!

Linda


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john68
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13/12/2018 5:51 pm  

Even car parking at hospitals here can be expensive. One day procedure I had done when i paid my ticket it was £11.00 that’s 13 US Dollars

ileostomy 31st August 1994 for Crohns


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Raine
(@raine)
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Posts: 55
14/12/2018 7:34 am  

I'm not looking forward to the new year since our copays and out of pockets start over again.  And we're now down to one income.  

Raine


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2343
18/12/2018 9:46 am  

Medical expenses, including parking, can quickly add up.

Always, check to see what services, tax breaks, discounts, grants, and programs are available to assist. They can make a huge difference.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
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Posts: 1497
20/12/2018 2:08 pm  

Yes, it expensive to stay alive.  If I get anymore major issues, of long term illness- I am saying no- I am tried, I have no life, and bored to death...…… 

I go to infusion for fluids, 3 x wk. - 4 hours gone-come home to bed-my husband just sits in his chair and reads- I/he make dinner- I eat in bed- and watch re-runs- then go to sleep. Get up clean kitchen etc.. clean up me--back to bed. and do it all over again.  Don't go anywhere. as my husband just sits in his chair and reads.  Nothing I can do about it- so live? nope. 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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LK
 LK
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27/12/2018 12:13 am  

Marcie...I hear you loud and clear. I too have a busy schedule like yours since the end of July. I am malnourished, my energy level sucks royally! My time resting gets to me too and then I start feeling like you are now. The "I am so sick of this life of mine syndrome." The rest you are getting now is important. However, I would guard against those kind of feelings. The ones that are high in not wanting anymore of this kind of lifestyle and basically giving up. Things will get better, and eventually they do. I also have people around me but feel very lonely Marcie. My life is not exciting at all, and while my kids were with their families I was alone Christmas Eve...a very hard time for me. My son very kindly took me out for a day of shopping  last week and he found he had to place his hand on my back and keep a forward  push there before I moved backwards. After Walmart, London Drugs,(three isles) I resigned to the extreme fatigue and we headed for home, an hours drive. At home, disappointed, I promptly crawled back in bed feeling like I had let myself down. Then when I was alone, I had a good cry at my lack of energy and steam. It is okay to feel like this, but I have found that the best medicine is to make a plan of attack. One thing I do when I am so down and recognize it as you are doing...is...I try and eat. But, I make it myself.  I then cater to my needs and desires. If I am so low in energy, I will buy more foods that will supply that need. My son runs to the store a lot, so I have him pick up what I know I am lacking in. High in vitamin veggies. I will eat beets, and as many green veggies I can afford. Some of them cause gs and to beat that down I will take Gas-X and I find it works well. I wash, clean and store them so they are ready for use in  portions. Then I will plan a solo dinner easy for me to digest. I make two veggies a meal. I am a widow so I get the alone thing. Sometimes Marcie, our families feel bad that we can not do things so they also lay low, but it is because they may have a bit of guilt that we can not join them so they stay home too. It is their non verbal way of feeling bad for us. Before my hubby died, I would encourage him to go and do something in the world. Go to the mall, bowling twice a week,  go meet the guys for a game of chess, have a coffee with  Paul...that sort of thing. I was sick for a long time and then he was also with cancer. I had to make him go out with the guys to a movie. Kick them out to do something like that. It will give them something to talk about. Then, I also did not feel bad that they were sitting around waiting for me. But, things changed for me when I started planning my own meals when I feel this badly. I have some meals in the freezer and lots of soup for those days when I can barely stand. If you have no appetite it is time to start watching TV cooking shows. I usually do not last more then three days not eating much when I watch those. If l planned lunch to be soups and cracker and cheese, I make it worthwhile and do my tray up nice. I am worth it.  Then I go back to bed to eat it. I am skinny too so the furniture is very uncomfortable to me, painful even, and I get cold so easy. Bed is warm cozy and comfy. When I am done eating I most always clean the kitchen up. I have found that planning my meals is something I really enjoy. I love to cook and have cooked professionally, so I also find it fun...right down to the pickles. Marcie, when I was at my lowest form after my man died, I would plan meals for the next day as something to occupy my mind and heart. It is not letting this thing we go thru win. I will not be a victim of my own circumstances. Plan something even if it is a craft you can do laying down. Something like counted cross stitch. Crossword puzzles are good too. It is easy and light and you can never loose your place forever. That is where the counted cross stitch comes in. If you do not know how to do it, then have your man go to a store and buy a small kit picture for you to do or make a point to order one on the internet. Try, 123-stitch or someplace under counted cross stitch. Then make a point to learn it and do it. If you need someone to guide you thru it I would love to help. You can private message me, that goes for anyone here. But plan something Marcie then do it. You  have gone thru so very much to let it win now. You are a good voice here and fun to read.  This is a part of moving ahead, one foot in front of the other no matter how tired you are. I always feel better when I have planned something to eat and carried it out. I still do not get out a lot, but even if I go the Kiwanis market in town for one hour, I have done something. I am planning my garden for next spring. It may not get done but I am planning. Keeping my mind active is a key. I love to watch Jeopardy. It surprises me how many answers I get right and I blurt my answers out even if I may be wrong. If you have a TV in your room, invite your hubby in for an impromptu contest and keep score. Nightly!  The looser does something for the winner. It creates a fun time and a challenge. You just hang in there Marcie, you can beet this thing. When you figure I spent a year in hospital and thought I would never see the night sky again, and then won that challenge, hooked up to a vitamin bag and with a pic-line the whole time, you can do this too. I challenge you to rise to the challenge and concur it. No matter how long it takes. Doing one small activity at a time  will help build strength in these times. This is getting long, but just know that we care about you and we hear you. Things are a bit slow here because to the holidays, but messages will pick up again. In the mean time, think about this as a challenge and create a way to get through it all. All the best to you and let me know how you are doing. If it is a while till you hear from me hear it is because my vision is causing problems and I can not always read or focus on words no matter how large I can blow them up to. I hope your Christmas was good and that your New Year will be a time of further healing. Linda

Linda


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Marcie
(@shulmjs)
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Posts: 1497
27/12/2018 2:19 pm  

Linda, Marcie here...  I will never get back to the way I was feeling even right after my shock of this surgery-- living with Nellie and her demands has been an event-but mastered. Thanks to this blog.  I cant go back wards.  I have a low level of COPD.  and when they did the trek on me, they cut my vocal cords-so talking and breathing is harder every year.  When we get so sick like this (I was every ill) what is under lining of something that may arise in 10 years ,comes on fast.  Well it did for me.  I cant make a bed without resting for 1/2 hour  now.  Things are getting worse for me.  so I am a bit grumpy here sometimes.  I fee like a huge fat elephant is sitting on my chest all the time-but breath well.  when I get up? I am taking that elephant along with me. But getting tests done for proper treatments this week etc.  At least I am not giving up-- no magic pill for me here....  adjustments.  

Linda u speak of foods, just eat what u want...…..  You know how to eat now after being on this blog now.  I am having a ball...………….  as far a weight foes??????????  Nutritions will be in your favor--you really cant GAIN WEIGHT with these.  watch the vegs.  You and you son go to lunch sometime.  eating at different places r fun.  I prefer diners, they have home made foods and less salts. And always a take home. or just do a pizza...…… or something naughty--once in awhile WE HAVE TO LET GO...…………… 

Complaining turns people away--so make it a fun day and leave your issues at home in the closet. My closet is full now.....but there r others...….  

as far as the cost of living goes?  I call the shots. 

 

 

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
(@shulmjs)
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Posts: 1497
27/12/2018 2:31 pm  

Linda, I also do something everyday-a bit of cleaning here and there.  I like to SEE my progress. And it is necessary …….. I have iv fluids 3-4 times a week. (  have to go out for these-but I am socializing)) so? I plan around that for lunch's with friends.  I have to work it.. MY WAY.. I am not like I was.  Nellie or not, I am NOT. getting better.  So I am planning around my NEW/DIFFERENT illness's now. And yes, it will get worse, so I know that I better get my dandy fanny  out there now.. After all, we all know the backwards and then going forwards is all about. Which I think  is important to see this so we will go out and enjoy NOW !!!!  Some can more than others. I know my limits and you know yours. but nothing wrong with having someone with you and push it a bit further.  A longer ride...……. a snack out- then home. even a cup of coffee or tea OUT SIDE OF THE HOUSE. I do this--alone mostly after infusion.  

A New Year is upon us, I am not looking forward to or against it.  Time if flying fast now...…. But I am getting my size 10 feet wetter and wetter now...……...feels good !!!!!!!!!!!!!!!!! hugs. M.

Linda, join a club...……….something fun or an illness that you have trouble with.. like getting ENERGY.. simple exercise - nothing heavy-- enjoy a short walk in the mall or a cute shop. You know the ropes of this now-- you have your Dr. your walking.  a cute little shop all alone-drop by and walk through it.. that is exercise. (pretty much all I can do now,  a tiny shop and find a chair to sit in) but I do it. (leave the charge card home---------  :-) ------)  gonna be along winter...………… we have only just begun with that...………… so I am now off to clean out a dresser drawer. a little at a time.. right?

 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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