Hi gang!

 

  It's been a long time since I've posted, but aside from many of you being my Facebook friend, there's another reason I've been silent. 

 

  As many of you know, since 2009, I've had three ortho surgeries (both clavicles rotator cuff decompressions, and right hand carpal tunnel releaseand, left one being this coming February) and five GI surgeries, you'd think that's why I'm writing, but no. During all of that period I've been witness to my dads (whom I love more then life itself) three heart attacks, pacemaker surgery, 3 vascular surgeries, an emergency triple bypass (we nearly lost him), and a shattered femur (femural neck spiral fracture) resulting in 2 major surgeries for right femural IM Nail (they screwed up the first one, so three days later, did a second one). 

 

  I've only one sister, who cares only about herself and my parents money, in other words, I've been caring for them myself, during the time I've been having my surgeries. My mom doesn't drive (she's 82, dad is 80) and was just diagnosed with RA and Parkinson's Disease....it's all catching up with me now. I thought I was strong enough to deal with it all, but as I'm forced to bare witness to my beloved parents slow demise, it's taking its tole. while I'm happy to report the mechanics of my newest K pouch are working, and not leaking (I've spent the past three years leaking aka soiling myself in bed, or out in public), I've only about 15% of my GI tract left (Since 1990 I've had my entire rectum, colon, and of my small bowel surgically removed), and what's left isn't happy at all being forced to do so much work. I've been nauseous for weeks, with an average daily stomal output of 1.5 litres, almost daily vomiting, and the inability to eat any solids for months now. Combine that with my GERD th so bad my entire esophagus is on fire (despite taking daily Nexium for years now), and literally being in tears off and on every day, I feel like I'm coming unglued.

 

  Now problem is, I cannot, under any circumstances, let my folks know how much I'm suffering, but it's starting to show. Since my last k pouch surgery last May 22nd, I've lost over 45lbs, and no matter what I do to stop it or even sliw it down, I'm still loosing, and weak as a kitten. I'm not sure if there is anything anyone can say that will help, but I need to vent. As I said, I'm just not strong enough to deal with it all, and it's literally making me crazy, and disappointed in myself for my total lack of courage, strength, and tenacity. I'm turning 47 on Tuesday, but all I want to do is crawl under a rock and die. I'm so depressed the only things keeping me from giving up is my responsibility to my folks, and to my beloved spouse, who's been my rock. I'm so very thankful to still have both my patents alive at my age, and after everything they've done for me (they literally saved my life, from the moment they adopted me, and throughout my life). They've always been there for me both emotionally, and financially, and have saved my neck more times then I'm willing to admit. They sacrificed their entire lives so that my gold digging sister and I had everything we desired. They didn't take a real vacation for over 30 years just so we'd have everything they didn't when they were young, how could I ever possibly repay their sacrifice? When my grandmother (dads mom) died from Alzheimer's, they told me if ever they are to a point of helplessness, to never allow them to waste away in a urine soaked nursing home bed, and I swore right then and there I'd always be there as long as I live, and that I'd never, ever, put them in any home except their own, or mine. 

 

   With all that said, ironically, their illnesses are slowly killing me, and I don't know what to do. For the first time in my life, I'm totally lost, with little hope of a happy future, I can't stop crying, (I've been on anti deoressants/anti anxiety meds for over three years now, but they've stopped working), and I'm in a place where there's no light, only darkness and sadness. I'm at my wits end, but I have to keep a brave face, I cannot show weak eyes to my folks, as they have enough to worry about already, however, driving 63 kilometres each way, to their place, at least three times a week (since dad broke his femur, I've driven over 40 000 kilometres driving them shopping, to apts, etc) is just too much to handle, so how do I fix this without hanging at the end of a rope? Any advice? Please, I'm desperate, and don't know how much longer I can go on like this, thanks for letting me vent, as I can't see my screen anymore through my tears, bye for now,

 

Eric :-(

Original Post

Hi Sweetie,

Wow, silence is not golden...it is a sign that the world has turned on its head for you once again (and again, and again...). I am so terribly sorry...there are no words.

First off, I am going to be my psyco-rigid self and give you some advice. Sympathy is wonderful but concrete advice is better.

First off, You have way to much on your plate and need to streamline and simplify your processes.

Start with all of those km that you are driving...can you move your parents into a place closer to home? If they are now officially dependant and require your constant care, no matter how much they love their home and their neighbourhood, they need to be in something smaller (if they live in a house then an apt) and eaiser to manage as well as closer to their primary care-giver: You. They must move. That is compromise 1

2. You cannot be there for them if your body is falling apart in front of their eyes.

You are not absorbing anything...if you have just dropped 22kg then you need some sort of boost or tpn...this is not funny. You were not that fat to start with! You need to order liquid food supplements, start vitamin loading and get your body some energy back...half of your depression is malnutrition. You do not have enough energy to do it all and your body is balking at you. Your iron levels, trace minerals (magnisium + Bcomplex play major roles is nerve and sleep patterns)...get an appt with your local nutritionist too...This Is a medical question and not a comfort issue...

3. If you are not absorbing nutrients then you are probably not absorbing your anti-depressants either...crush into water, chew (they taste like crap so follow with juice) or whatever you need to do to get them down...

4. Stop hiding from your wonderful parents. They know you and have been there for the last 45+yrs...do not add the burden of pretending to them...it makes them feel useless and old...They are still your parents and respect them enough to tell them (they still have eyes to see you melting away in front of them...) how sick you are but that you feel good helping them...make them you accomplices...it may hurt you to tell them but trust me, they already know. It also takes a weight off of your rather fragile shoulders.

5. Ignore your sister...she is not in your orbit. Don't waste what little energy you have worrying about her..let karma do it for you.

Hun, if I could I would fly over there right now and pick the burden up off of your shoulders...but I can't...So find some nice, young volenteers to do it for you...help exisits...ask the nursing schools, unemployeed health care workers...There are people out there...you need to look (KGG or something like that where you can put a local add in for help)...

You also need some time to heal your aching body...get some air, go for a walk...breath!

Huge hugs

Sharon

 

I am so sorry to hear all this, Eric. I agree that you cannot continue on the way you are. If you cannot relocate your parents, and even if you can, you probably need to hire outside help to care for them. Running yourself ragged does you or them no good, so you have to compromise, regardless of the promises you made. I suppose you could pack up and move in with them, at least temporarily, until you sort out what their long term needs will be. But then, what about Freddie and your independent life? Your parents would not want you to sacrifice your happiness in order to dote on them. It could work for a couple of months, but it is no long term solution.

 

Go to your local social services outlet to get advice on what services are available. And, if you have not done so yet, see an estate attorney about durable power of attorney, advance directives, etc..

 

I wish I had a magic wand to make your parents' and your health problems vanish, but I guess we have to accept things as they are, not as how we want them to be. 

 

Jan

Last edited by Jan Dollar

Eric, I thought about my immediate response to your post and then read the above spot on ones and realized I could not have said it better than they did. What a hard, hard position you are in. We could be tooling along just fine and then life changes and we can't cope the same way. I will add my support by sharing that I have a friend with a very ill mom, not geographically close, with a sibling who is no help...in other words, a similar situation to yours minus the personal health issues/surgeries, although she did develop high blood pressure from the stress. I said something to her that I think and hope may help you. I said that you can only give 100% of yourself and if you give it all to someone else, there's nothing left for yourself. I also said no one gets a medal for being a martyr (please, I mean NO offense by this because we've all been in this position at some point or other) and if you go down the drain, no one wins anyway. I finally asked her what the worst to happen could be if she didn't do some of the things she felt a responsibility to do. In other words, how much truly needed to be done and how much came from guilt. She was always a "good girl" and needed to continue being one. It just helped her to see things more clearly. Sharon's suggestion to seek help from the community is vital. There are services out there - hospitals, community centers, etc......

Yoir body is talking to you. You have the right to take care of yourself and listen. I wish for you a good shift soon.

Eric,

I knew your posts from way back and your sense of humor was sometimes the only bright spot I had in my day.  Sometimes the only thing that kept me moving forward to the next sunrise.  Truly.  And now your suffering is breaking my heart and I don't even know you (except via this forum).  Eric, I am so very sorry for the terrible time you are going thru now.  Others have said what I feel too. I have no doubt that the world is better with you in it so please find a way to take care of yourself.  Ah......here is a hug.........

sk

Hi Eric,

   I do not know you, I am actually old on the boards( over 10 years! ) but was away for awhile. I agree and couldn't have said it much better than Jan and SKN69. 

    I can tell you this, yes liquid vitamins are a plus. I can actually tell you of a good brand. Also, when I was underweight 128lbs....I bulked up to 207lbs, then cut...However, for 3 years there I was frail, stuck at around 138-142....I mean if I ate bad for a few days, I would drop a few lbs. I hated myself image beyond having an ileostomy. I was depressed about it. I had a gf at the time, and I was in a bad mood here and there, not bc anyone else, but bc I didn't like myself( looking back ). I did take the time Eric to read your signature before writing, and I did read the first two responses, every sentence( all great advice and idk who the posters are but they probably give the best advice in what they say with you parents caregivers etc ) but I thought I could add something from the other side. When I look back Eric, I was a mess not just bc of circumstances all the time, but bc of my image, and what I thought I didn't like....with all the while having a gf who didn't care...but of course, I did. It brings me to my point, during that time my underlining issue was me and what I thought of myself. It was being 138lbs.....It wasn't a bad relationship, it wasn't my lack of intelligence, which Eric sometimes people who are whitty or smart, it is great in the classroom or academics, but it can also bite us in the but as well....and sometimes people's minds are all over the board, analyzing everything( Guilty ). So, I would add that getting somethings back in flux might help. 

    I can tell you this....liquid multi vitamins are great! Remember when I said I was stuck at 138lbs for 3 years, like nothing would budge....if I didn't eat well for a few days I would lose some weight. It was like an epic battle. I would gain 4lbs, then lose 3, just a cycle...like a hamster in a hamster wheel. I was prescribed ensures during that time....didn't work.....they went through me....I then was prescribed Oxandrolone....not even joking. It is known for anabolic steroids...it helps people keep weight, etc....However, for me it just burned more fat( it was also shown in clinical studies to do that ). I quit that within days...I then started drinking alcohol socially, but it wasn't me...I would never touch alcohol. You see how one thing, just can help implode others...So what helped me? Liquid multi vitamins...and I looked on the back of the ensures and seen why they were ripping through me, the ingredients are not optimal nor the greatest. What helped me was egg white protein powder. I used the ensure, not much, to use as it doesn't have lactose like Milk. I know most say whey protein.....but it is fast absorbed and also quick out of the body.....alot of Bodybuilders get IBS like symptoms, when I see their diet, and see the time a day they have symptoms it usually surrounds WHEY protein and too much of it. Egg white protein has Amino Acids, glutamine, and Branch chain amino acids. It also is slowly digested, it is a liquid and not a protein bar. I can say when I did add the ensure and egg white protein....this was a definate helper....not game changer...but people started to notice. Also, I didn't eat 6 meals a day....3-4 meals. What I did, was add olive oil to something, non trans fat butter to things....just add one small thing to one meal in a week, see how I tolerated...before you know it, the extra 200 calories here, the extra 180 calories from adding olive oil or fish oil there.....I got all calorie needs in 3-4 meals, and tbh it was way more suitable.  Now your situation I do not know you or your restrictions....I did see your surgeries. So I will stop with that. If you want a run down of a Moq diet I did, I can jog it down. However, I will stop there bc for me to presume is not right. I just thought I would chime in on that.

I lost my stepmother this year, and my father who is an engineer, called me up and started doing beneficiaries for himself before she passed. She was battling an illness that was undiagnosed, you name it, he took her to the national institute for health, UPMC, C.C, etc....She had a rare disease that only 42 ppl in the world had. Long story short, he was suffering emotionally, and he told me he almost thought about taking his own life....Well where in the world am I going with this???......I could barely be there for my father, he ended up having neck surgery, hernia surgey, ....I could barely be there bc I had set backs in 2015....so I was so pizzed off Eric, bc I couldn't be there for everything...that things were getting to me....but you know what....I learned I had to get better, or else I was almost useless to help. Kind of that old saying if you can't help yourself...well right now, as someone who has been to 4 funerals this year....and man I cannot imagine what you go through physically, I can't Eric......but I can tell you this, if you cannot help yourself and your doing things that you know are not good or pushing yourself to far....then really, how much can you be there...like me in 2015. So I would concetrate on yourself a bit....and I agree with the first two posts( only 2 I read )....with helping out your situation if you can. At the end of the day, that is what is going for you to help them better is you doing better. Oh btw, my family never cared nor my father cared what I was going through physically, just me being me was enough, me being alive was enough....I never seen it that way. Then again, look back at what I first wrote about when I was younger. 

 

So I am sorry to hear your physical problems, and your family. I hope something I said can relate, either man to man, or what have you. I think you got sound advice from previous posts in here. If you ever want a moq diet of what I ate...I can write it out on here....but I won't write something bc I don't want to pretend I know your limitations and me doing so would just be writing a diet that you may or may not be able to do......but I can. Also, I had to learn my family didn't care about my symptoms/problems, they are just happy I am alive and accept me for me...even though I don't at times( often ) especially this past year. That's all I can add, bc I canot imagine what your going through.....but I think you got good advice in previous posts. 

GL

   

I hope you are doing better now Eric. Everyone has written heartfelt posts that are encouraging. You and they have helped me tonight. I am an only child and my wonderful father lives 3 hours away. I helped him by going there every other weekend when my step-mother was dying from cancer. She died over 20 years ago. 

When he became very ill in 2001, while staying 1300 miles away I flew down and stayed 6 weeks. I've done this many times there and at his closer home. The summer of 2009 I was with him almost the entire summer. He had 4 surgeries. His current lady love of the past 20 years can't drive and they are both now fraile.

I can no longer drive myself to see and help them. I saw him for the first time in a year last November. He's lost weight and I can't convince him to hire someone to come in several times a week to help them.  I feel guilty I can no longer help them. We made a deal several years ago that if they would ever need to permanently go to a nursing home that he would instead hire professional in home care. He isn't wealthy but has savings that I want him to use for this.  She doesn't have much savings but that's okay. He should spend every penny to make their lives better. His only 2 beneficiaries are her and me with the greater portion going to me. I feel guilty that I can't be there. I talk to him almost daily.  He waits for me to call. He's 84.

He says he will hire help when they need it but they aren't there yet. I convinced him to talk to an agency but he won't hire them - yet. He needs a heart valve replacement but the surgeon says the recovery would kill him. I feel like he is holding back because he wants to leave me a nice inheritance.  He's worried about my poor health instead. I don't want to upset him anymore than I have to so downplay a bit. I understand what you mean about that.  If you can't do as much as in the past please tell them...

Thanks everyone. 

Last edited by TE Marie

I to have not been on for long time. So much happening it's hard to put into words without being even more overwhelmed. About 4 years ago I really started having horrible pain and then no control. Had j pouch for about 15 years with many cases of pouchitis.  But this was different and alot worse. Working full time and spending more time in pain and in bathroom.  The only way to explain pains sorry guys it's like labor pains that come and I do my yoga breathing to get through them and then run to bathroom.  My GI doctor that I love and have had for 20years, said I needed to go to cleveland clinic and was there the next day. He did a scope and said that due to multi cases of pouchitis that my pouch had become weak and was causing very painful spasms and that was causing me to loose control. He prescribed me Bedonna/opium suppositories OMG they through me for a loop. But they helped with pain and spasms, but at first sleeping my speech and could not due much. To say the least I went on short term disability.  Had to take every 12 hours suppository and lay on left side one time in middle of day. I got used to them after awhile. The doctor suggested permenet disability due to not being able to drive and limited me in other ways. So shocked I have worked my whole life even having to have time off due to pouchitis. I fell into a bad depression for about 4 years and struggled with my whole life changing again. We tried valium suppositories and alot of imodium but the only thing that worked was the belladonna / opium. Thank god for husband ins it paid for it because it's over $1500.00 a month. Last nov. I went on medicare due to husbands ins dropping spouces. Lost my family doctor even though they said she was on my plan. Found out the hard way after seeing her when I hot bill she was not in my new network. That is after I was told she was, that devastated me and have done everything I can do about it. The Belladonna /Opium was not on it either. Went to cleveland clinic in Dec because he told me the only medicines that worked wad what I was taking. He suggested back to valium suppositories maybe they will help more now. I have been on them since first of year and leak all the time bad cramping. Never know how bad it's going to be day to day. How dumb to say I only leak when I walk even at grocery store. If I can't get to rest room for awhile the button burn is bad and then I of course start to bleed.  I keep it all yo myself I just way to tired to talk yo family and friends anymore. Went for j pouch scope and test to see if problem with analysis wall and musleses were weak told I have scar tissue and have not gotten other tests back yet. Doctor said I needed to go back to Belladonna /Opium suppositories that seemed to work. I don't know the form but it's yo my ins that they make an exception and cover it. I got a call and was told it was denied. I just lost it and cried and cried. Thank god I was alone. The person on the phone told me to write a letter myself and have him write a letter not a form. My shrink said she would write one also because she sees first hand every 2 weeks how I am. I'm just so tired of fighting for everything.  Try to except what I can't change but I just feel done. Been married 32 years and only real problems we have had is my health. My dad passed away 5 years ago and now take care of my mom thank god she lives couple houses down. But that in itself is so stressful and no one yo really help me my sister gives me Sundays off. My shrink us the reason I think I am still here. She is the only one I can truly talk to. If after writing the letter from me and my doctors does not go good. I truly give up. Please forgive me for going on but feel so alone and defeated.  

 

 

Hi Frances,

First off, I am so, so sorry about the hell that you are going through...that is not a life and not a way to envision your future...Choices between beladonna or valium...no way. There must be a 3rd choice...have you considered pouch removal? It may be the most frightening choice of all but it may finally give you some freedom to live the next years of your life with peace and serenity...painfree.

I won't give advice, only compassion. You are holding it all together...just barely...you are so couragous...I hope that the guys at the C.C. can help you out of this mess...and give you your freedom back.

Huge hugs

Sharon

Hi Sharon,

To give such companion and support to someone you don't know means more than you will ever know. I found out last Thursday about the denial and the only one no's is my husband and he did not know what to say so did not say much. My sister is my befriend asked me last night and I said I have not heard and so did my mom. I cant tell them before I figure out what to do. I had a ileostomy for the longest 3 months of my life after removal of colon while j pouch healed and I know I cant live like that again for sure.

I did call my psychiatrist because I was loosing it and alone when I got the info. She was amazing and called me right back and was angry that they denied it. She sees me every two weeks and sees what I go through even knows the way I walk how things are going. I am able to tell her everything and feel so safe. I thank god for her. She said she was going to start a letter to ins company to explain from her point of view how I need them to cover this medication. I did not even have to ask her. She told me to write a letter explaining what I go through. I know its a form that he fills out but knowing there office the office person filled it out and he just signed it.

I am so tired of fighting for every little thing in my life. I got diagnosed with Hashimoto last year and they are keeping an eye on my ANA because it keeps getting higher with every blood test. I am falling apart and I keep it all inside except with my shrink. I feel everyone in my family and the couple friends I have left do not want to talk about it.

Is this all that I have now leaking 90% of my day butt burn bleeding from that. Painful spasms that come and go?

I just need so peace and happiness.

Please forgive me because it does sound like a pity party for me.

Thank you so much for taking time out of your day to say such kind things. They mean so much.

Frances         

I feel your pain and apprehension Frances. I'm in a big pile of depression here. I tried to make my pouch work 5 years. I have been going to Mayo's since 2012. My local GI referred me.  

Last fall my doctors advised me to have it removed as there was no surgical or medication way to make it work. I had the opposite problem, I had to give my self 5 or more enemas a day. That was when I asked if she could just divert me to a permanent ileostomy and leave my pouch inside. So last fall she diverted me. Along with all of this is dense adhesions she has to spend more than twice the normal expected surgery time . I don't like my ileostomy BUT it was a thousand times better than my temp one in-between surgeries. 

It  didn't work. I went back on antibiotics for a few months before surgery around a week and a half ago. My surgeon, Dr. Mathis, is more than I could expect. She also repaired my stoma as a hernia developed under it. So I am back to life with a new stoma, stitches in my butt, opened incision places from the very long incision. I have to pack them untill it heals. They have to do these surgeries open. The same mid-line location was used for the 4th time plus she had to cut above my bellybutton for the first time.

I am spending 24/7 recuperating from this. Same as always, ileus that has me going from too high of pouch output to hardly at all and being bloated and in more pain.  I've told my husband to call 911 if I  have the worst symptoms. We've been to the local ER and I have contacted my PCP as well. We will probably be driving back to Mayo's this week. Etc.

What's the alternative to all of this?  For me the only one is death. I have excellent doctors at the #1 ranked hospital in the USA and 2 top doctors advising me. I just need to take the time to recover. I still had pouchitis and a narley cuff thick as my body loves to produce fibrous tissue. She also removed something off of my small intestines and was able to repair that at the same time. 

My husband is worried. He said the first j-pouch surgery almost killed me and this one surgery is worse, per my surgeon. Medicare has paid alot out for my surgical care and it also covers stoma supplies. I am on it as am receiving disability benefits.  The secondary insurance covers the rest. I know what you mean about prescription coverage too.

I haven't posted here or anywhere else much of late. I'm depressed. I have learned so much by being on here the last 5 years that I am better equipped to deal with this revovery. I know what foods to eat etc.

As things calm down I am slowly getting better.  Unexpected is there's not much pain where she took my j-pouch & my rectal stump out and sewed me up. There was a pressure in there and in my tailbone area that is gone. So I see the light at the end of a very long road.

You are tough Frances. You have dealt with all of this 3 times longer than I have and I  admire how much better you are at making yourself do things, like caring for your mother, than I am.

Last edited by TE Marie

I had no idea you were recovering from such a life changing surgery. I hope and pray you find some light at the end of the tunnel. It sounds like your such a strong women. I don't think we could  be weak going through all this for years. Taking care of my mom for the last 5 years has been really stressful you know about that and when you get really stressed I get sicker. My mom could be doing a lot more than she does and I am now dealing with having her do more. My shrink has helped me a lot with that. She is not happy that I am making her do more things that I know she can but she just wants to sit in her chair and watch tv. She has had many surgeries and deals with pain. But she does nothing to help herself has quit all PT that has been offered to her. She just wants a magic pill but there is no such thing or we would all be taking it. She makes me stronger in a weird way because I don't want to end up like her.

I got my denial letter today. Its funny the valium suppository is 2000.00 and the Belladonna/opium is 1500.00 a month so its 500 less so dumb.

I am starting my letter and going to ask my doctor to write a letter on behalf and my shrink is also writing. I am doing all I can do and just keep plugging along.

I don't know why I stopped writing I think it scared me so to read such sad stories. Depression is a very lonely place and I have lost a lot of friends because I tend to isolate my self because its easier and I know that is the worse thing I can do.

I have looked and looked for support groups even on depression. I went to one group 3 times but it was more for bi polar and it was not a fit for me. I will not give up finding one. It nice to know your not alone.

Please take good care of yourself your a brave women and so caring.

Sending you prayers and good thoughts

Frances

 

 

 

 

 

 

Well when I told my other doctors that I was denied by ins to cover the medicine that worked, by the way is 500.00 cheaper than stuff I take now that does not work. The other doctors were very angry and said that they wanted to write letters in my behalf, which really moved me and they see me a lot and really know my day to day living. I was told to write a letter myself going into more detail than the form they fill out gives you. They also asked me to ask my specialist at Cleveland clinic to write a letter. I know how his office runs the when I asked about the letter seeing about getting them to pay for it, he asked if it was a long form. I told him I had no idea I have never done this before. He told me to call the next tues afternoon and talk to his secretary she should not be really busy then. I waited and try to explain what I needed and she said she already did it and I said no, that there has been forms but that one has never needed to be done. She was not happy with me doubting her so she looked into my file and said that I was correct and gave her the number to call and she asked what it was for and I tried to tell her as short as I could.

They say you should know when they fill out the form you should get a answer within 72 hours I waited over a week and called her back and guess what she had not done it. So I again gave her the phone number went over why and she said she would do it right then and call me back. Never got a call until I called the number myself and she said it was denied with the info they received. I know she answered the questions and he signed it. Sat at the park in my car by myself and just cried I needed that time to be alone. My husband still thought I was at my moms so I just sat there and tried to digest and figure out what to do next. I am tired of quantity of life I need some quality to. I called my psychiatrist which I have never done and I see every 2 weeks and I call it my safe place and I am so lucky to have her. I hold in everything so people don't worry but with her I can tell her everything.

She got back to me within 30 min and when I told her she was furious and said she was going to write a letter also about what she sees and how I am every 2 weeks. I had to wait to get denial letter for case number and where to send appeal to.

So she said to write one myself with all details but not sure what to put in it. I cant go back to when I had UC. So I am trying to write it pertaining to the last 4 years when I started the medicine that worked and how this other medicine that I have been trying for 3 months does not work.

Do you ever get so tired of fighting about things that you need that will just help you have kind of normal life.

So sorry to go on and on.

I hope your taking it easy and getting better every day. You are so strong and caring.

Sending you hugs prayers and good thoughts. Please let me know how you are doing.

Frances

 

 

 

 

 

 

 

 

 

 

 

 

 

We are one the road to Mayo's.  Bloodwork first and that will determine the order of these three; Stoma Nurse, Surgeon, IV fluids. I was relieved when her nurse called today. 

I pray you get the meds that help you. Have they ever considered Remicade, Humira, etc,? Those are more pricey and might be covered. I  was at the state they would not have helped. 

Wish for me to be feeling better soon.

Frances,

I do understand..This struggle is hard enough without having to deal with red-tape-administrative-fools who are so stuck with their noses up code books that they do not see living, breathing human beings and the end of the file numbers.

ARggggg!

All that you can do is write more letter, post on facebook a plea and try to get enough people to sign a petition that they will change insurers if you are not covered (money talks), or yell and cry (you are already doing that and it may help short term but in the long term it does nothing)

Cry, scream, yell...but do not lose hope. We are here...We are here (my favorite line from Horton hears a who)...it means that you exisit to someone and that you are special to all of us.

Take care of yourself and keep fighting

Sharon

Frances,

Ditto to what Sharon just posted!!! The squeaky wheel gets oiled. Be a pest, but a nice one.

From my little bit of experience, the part D plans, relating to Medicare, require a listing of your drugs take to calculate  each individuals premiums. Is my understanding right kFrances? It appears that they then decide what they won't cover in addition to that.  My BBF has run into problems relating to her Part D policy in Chicago. I know her asthma inhaler is one of them.  

Have you tried contacting the drug company that manufacturers these drugs? Some have programs that reduce the cost of their drugs to individuals. Try all you are doing and attack the problem this way too. 

Obama Care appears to have done nothing for insurance premium relief for Medicre part D people.  Don't get me wrong. I am not trying to be too critical about it. I thought at the time it was passed that it would need a lot of tweaking. But instead of doing that there arepoll  politicians spinning their wheels trying to get it repealed and maybe put something new in its place. No specifics on what the replacement law would look like just that it would be better. IMO, the current bill probably needs amendments to it. Kind of like the tax code, I have no idea how many times that has been changed. 

My trip to Mayo has been great. Yesterday I had a great appointment with several Stoma Nurses.  They had to increase the size of wafer needed plus additional work building it up underneath of it with putty like reinforcement under the wafer. So far so good. I'm going back this morning so we can tell if that new way appears to be working. 

  My surgeon says my incision has improved a lot. She unpacked and packed the openings and said it is looking a lot better than when I was discharged last week.  She prescribed another round of the antibiotic.  She got a chuckle when she saw I'd placed a ]feminine hygiene pad over it.  She said that was I good idea as it is still draining alot.  She also ordered up 2 bags of IV fluids for me. The bloodwork told the tale of my dehydration. I wish it was easier to get EIV fluids at home. 

Last edited by TE Marie

Your so brave to go back and have the ostomy back. I hope the mayo is not to far of a drive for you. Your attitude is so good. I am at the point that I am just angry and tired. Last night bad night 4 times up and two had to change pjs and wash up. Thank god for the huge pads or I am heading for depends. Its been 4 years since the bottom fell out. Its just such a shame that we have to fight with ins people and spend so much time at doctors offices. Because of last night its hard to walk without  the terrible burn and bleeding now. I refuse to give up but sometimes it just feels like is this what the rest of life going to be like.

I think being really stressed makes things worse. My mom is a hand full but with the help of my therapist she is helping to let my mom do more. I was doing everything when I knew she could do certain things. Its like weaning myself off her a little. She does not like it at all but she is doing more.

I know this has been really hard on my husband of 32 years and really feel bad sometimes but its not my fault and its out of my control sometimes. That is very hard for me to do. I like to be in control. My husband is very healthy hikes about 5 miles a day uphill all the way I swear with the dog. He teaches Yoga which he is just teaching on class a week in the evening all levels and I always go, even if I have to step out to use the restroom. I just feel bad for him that we cant do more things together like we used. He is pretty good about it all.

Well enough about me I hope you are doing well and healing great and that will be a really wonderful thing for you.

We are all on our own journeys in life and I hope from now on yours is great.

Frances

 

 

 

 

 

Frances,

So sorry for the bad night...it is always worse at night...you are so alone in the quiet and the dark with your thoughts...Those dangerous midnight thoughts that pull you down instead of the morning, sunlight thoughts that lift you up and give you hope.

I find that marriage in general is a See-Saw....sometimes it is me who is up and sometimes it is him...Same with the down.

I felt so guilty in the begining being the sick one. He is 14yrs older than me and was so healthy compared to me. Then at 66 he started to fall apart at the seems!

Big and little things but they put a crimp in his lifestyle and mine...I am the caregiver in this family even if I am the sick one....so being weak, sick, in pain and unable to do stuff frustrates me and sends me into wild bouts of sadness & anger...hubby used to complain that I was 'doing it on purpose' (meaning falling ill during holidays, weekends etc...But what he didn't understand was that the stress would build up all week/month and when I finally had time to breath my body would fall apart)...now he is more compassionate towards me. He gets it even if he doesn't like it.

Times change and so do people and even though we do not like it we have to face it...it would just be so much easier if we were not fighting against our insurance companies at the same time...

Huge hugs and hopes for a better day today.

Sharon

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