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A letter to those who care...

Started by Trish323 on 10/11/2012 11:26am

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me.

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about work, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

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41 Responses

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I should have explained this. I received this from a friend and she told me its a good idea to send to my family and friends as a way to communicate effectively what I need from them. I have done this and wanted to share with all of you.

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Trish,,,Words cannot express how beautiful this letter is, U have me cryin. I would like to copy this and make a large poster of it and hang it in my home. U nailed our feelings ...Its so true,,and yet so heartbreaking that our loved ones just dont get it. BRAVO....Remember,,ur not alone,U will always have US. Thank you for such a beautiful,to the point expression of OUR lives...Rene :)

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Thank You! All the words that I can't say and more!

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For any type of health related issue try this...http://drxnote.com

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Trish,
truer words have never been spoken,
Janet

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Trish,
Wow, thank you for sharing this .... reassuring to know others feel and act exactley the same way I do :)

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perfect words trish.
its a shame that even after shareing your post with someone she still didn't get it.
it makes me depressed that others see us as though we are less than the norm.
others expect us to put on our best smiles and pretend we are fit as a fiddle.
thing of it is.....some day they may be in our shoes later in life.
shame on them.
thank you for your post.
you said it all.
ray

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Hi Trish,,How did your surgery go and how R U felling? If u havny noticed I havnt been visiting this site for over a month,I have had 2 more MRIs in the past 3 wks to find out that I dont have not one disc left in my entire Lumbar and to add to that they found a Hemangioma at T5 n L1,,,also multiple thoracic bulging disc and 2 herniated disc at C5 N 6. Im a mess,I go to physical therapy 3x wk which considt of 20 min massage, tens n heat wraps, n then the chiropracter straps me to an inversion table to open up the disc space to help w the pain of the grinding feeling of bone on bone in lumbar area,,so u can understand the psychological state Ive been in and why I havnt been chatting...cant wait to hear from you,ive been thinkn about U,,hope all is well Rene :)

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Hi Rene !
I was so concerned about how you manged with the storm. You didn't mention so I guess all is well in that arena! Omg! You truly are a mess with all they found. I'm so sorry for all you have been going through. Sounds though that maybe the treatments will at least offer some pain relief. Are they talking more surgery? Just take it easy and let your daughters help with all the Sunday dinners!!
My surgery went well as far as I know. Came out of it screaming because nothing was touching the pain. They finally gave me dilauded IV PUSH plus Percocet orally and that held pretty good for the time I was in the hospital. I ended up coming home on the 4 th day instead of fifth because I was doing pretty well. The worst part of this has been nerve pain; on the Left ( surgical side) numb and pain in groin. On the Right is horrible pain in groin, thigh, outter calf and foot and toes. My skin there is so extremely sensitive to touch. Difficult to walk and still need the walker all the time.
I hope the nerve pain will little by little go away. Only meds I'm taking are Percocet
10/325 2 tabs every 4 hours. Stay in touch!

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Hey Trish,, glad surgery went well,,the dilaudid is great isnt it,,im surprised ur still having nerve pain that should have been aleviated w the laminectomy,,,when u go for post op visit make sure u tell them that,,,and dont let them cut u back on percs and dosage,,they will try to. I finally found PM that is keeping me comfortable,,yes im a mess but I pulled myself out of that funk and im determined to go on,,so thats why ive returned.....as long as i have the meds ill b just fine,,all I ask is to b comfortable if I have to live w this, good news is I was approved disability on first try. Im glad to hear from all U guys, U keep up the good work and keep writing,, all we have is eachother to lean upon,,,Luv Rene :)

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I get you. I make myself push to do things I shouldn't do so that I can care for my 4 kids and try and be normal. If I clean my house one day the next 4 days I can't move. It is hard to live in constant pain. I have done it for 15 years now. 12 weeks ago I had artificial disc/ L3,L4,L5,S1 fused. I am still in horrible pain. It was a 360 surgery. 15 inch incision on stomach and 2 5 inch incisions on back. I slowly am feeling better, however my pain is same right now as before. I didn't listen to doctor and tried to do something I shouldn't have and ripped my meniscus. Limping makes back worse. Can't use crutches because I still can't lift more than 8 lbs. So I really screwed up. The one thing that helped pain was to walk and now can't even do that.Stupid me. I have had no new bone growth yet in fusion so still cannot bend or twist more than 15 degrees. I thought I would be back at work by now. I doubt I will ever be able to return. If I sit more than 10 minutes I almost die in pain. I am a school bus driver. I just want you to know that chronic pain does stink. And no one can understand really unless they have lived it. People always give advice and it is very nice but I have spent more than 60,000 thousand dollars on treatments including this surgery that was partially not covered. So sometimes you don't need advice, you just need someone to sit next to you and listen. I am not a whiner. But everyone needs a pity day. lol
You can always meet someone else who suffers more and it helps and makes me grateful for what I have. When I help others it does take my mind off my own suffering. So I just wanted to say AMEN for that post. Oh, and for my family who says "well if you lose a little weight it would help" well, when you can barely move it is very hard to stay a healthy weight. So do not judge. :)

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Mornin Trish N Gatormom,,,Gator,,,u keep chuggin along I too push on certain days and then pay for it,,But u know what,,just to have that normal day by doing or serving n cooking for the family makes it all worth it ,,The painful issues will never go away so my theory is if it has to B this way either way I might as enjoy those days that I do push myself,,Its all for the kids to show them Mom isnt always broken inside n out,,how old R ur kids,,Mine R grown 25 n 23 N istill do it for them,..Everyone,,,enjoy ur day,,will check in later tonight,,,Rene :)

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Hey Rene! My kids are twin boys age 16, girl, 13, and girl 8. I push myself for them. I have a great support system and that helps. My husband is great, but really he doesn't understand this pain. He is tired and worn out. I pray I start recovering quicker from this surgery. I worry I made a huge mistake and now I am really truly disabled. If the bone does not fuse I am in big trouble. :/ I do enjoy life! I love watching my kids play sports. My older kids got the best of me. When younger I was able to do more and play. My youngest just knows mom is broken. I hate that. I have a great faith in God, and I know someday this broken body will be free of pain. It really does help to help others, and my kids are a great distraction to pain. :) Even broken I have a great life. I just heard about my friend who lives in another state than me, commited suicide due to chronic pain and she left behind 5 kids. That makes 2 people now that I know who have done that due to pain. I pray I never get that down and hopeless. I am so glad I found this group. I read comments and think wow these people get it!!!

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Gatormom,
Yeah we get. I don't know what I would have done without this site, probably gone off the deep end thinking I was crazy. Just look at what Rene has gone through. It's amazing to me that we are still here. I think we are some of the bravest people around!
Kudos to us all,
:)

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Gatormom,,I agree w janet,,we are all one big family here,,dont ever think u cant lean upon one of us...Family n Friends will never understand the chronic pain,,,,,keep up the good thoughts,,proud of you....Rene :)

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Rene and Upandown,
I thank you for this advice. I have had a weekend that I am paying for. I have so much that needs to be done. I don't know how I am going to do it. I have seriously been overdoing it, but I am afraid that if I don't it won't get done. I took today off to get over the weekend and back to cleaning I shall go. I have got to get my home back in order.
Rene, I am so sorry to hear what you are going through. Your right, though we all here are one big family here for one another.
Keeping all in my thoughts and prayers!
Hugs to all!

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Hi Trish and Gator and all my Friends,,,,Gator,,the dust will always be there for U when ur ready,,I too was an ocd cleaner,,Ive learned the hard way, so let it go,,I try to do one thing per day n thats it,,except for cooking,,thats my form of therapy while in pain,,I try to loose myself w cooking,,Trish found success w/meditation tapes, but im sure with little ones who has the free moment to sitt in quiet room and concentrate..Ive been reading allot of U complaining of swelling,,,Neurontin/gabapentin n Lyrica causes swelling if any of U R on it notify doc,,theres plenty other meds to replace it,,plus keep those tootsies elevated, especially during sleep,,pillows under the feet my friends,,dont forget..Rest also,,find that cozy spot in living room, set urselves up w/ phone ,remote FLUIDS and whatever else and just chill,,get up as needed,,frequent walk around the house,,u guys R rushing it,,I know its hard, but its whats best for the body,,,and dont forget those stool stimulants,,youll B thankin me for that,,haha..Hope everyone had a somewhat comfortable day,,top each day off with a nice glass of wine,,,cheers,,,,,,,Rene :)

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Rene,
I wish I knew you when I had my lumbar surgery. Most surgeons want results...they do the surgery and want you back to work A.S.A.P. Another success...keep those ratings up! I felt OBLIGATED to push myself, to be that person. Like I was baby if I didn't "get with the program." When I was told after surgery that my lumbar was the strongest part of my body...well, O.K., yes, titanium is stronger than bone...
People like you, who tell people to listen to their own bodies, that no two surgeries are the same, to actually "take time to heal," are a God-send. I don't know if it's because you're a nurse, because you've been put through the virtual "ringer" yourself, if you naturally empathize, or a mix of them all. But the world needs more people like you.
Janet. :)

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Trish:I am so close 2 your position it is not funny!I suffer from constant pain 24/7 & have 2 constantly deal with people of which you speak.I can relate completely where you are coming from as I have suffered more than 3 years in this perpetual agony that constantly challenges me 2 see how much more I can take.I try 2 keep that in mind,it's a challenge,it is also bringing out the best in me,in regards 2 personality & emotional stability,2.Spirituality & a positive attitude & outlook are my greatest weapons in this struggle 2 cope & maintain some sense of normalcy.I really abhor the fact that it is invisible 2 others,1 doctor even said 2 me he thought I was faking!I have seen more than 30 professionals since 11/2009 & the 1 thing that keeps coming up is why I am still able 2 walk,some are astounded at this fact,& at the same time dumbfounded as 2 how 2 help me cope.I am still eating,which I think is due 2 the dietary changes I've made along with limiting medication as much as possible.I wear a patch & take some oral painkillers,but the heart problems that cropped up in June of this year have complicated this case even more,so I have 2 take blood thinners & a beta blocker,2.You are so right,people all have a cure 2 offer,but it has 2 be left up 2 me & my current physician at this point in time.I pray you can continue 2 cope as well as it sounds you are,I admire your strength & courage!Every time I can make some 1 smile or laugh,I feel stronger & taller,despite the spinal shrinkage!Keeping myself involved with something,anything,2 distract from the beast that lurks hidden inside,so none can relate on anywhere near the same level as I deal with every day.All the best in your struggle! spinelessinalbertaJustKeepSmilin':)JesusSaves! P2

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Funny you mentioned Lyrica. I swear that is Satan's drug. Yes fresh out of surgery I had pain and my legs didn't work. So highest dose of Lyrica was immediately ordered. It was awful, slurred my speech, made me dizzy, made me have no memory. And it actually made my legs worse the longer I took it. I swelled and then my legs would spasm. Almost like I was having a seizure from waist down. 6 wk check up I told my doctor and he immediately took me off that dose. He had to wean me off it. Gabapentin I have taken in past and it caused weight gain and swelling also, but not the other issues. The whole thing about taking stool softeners is sooooo true. I truly almost died trying to go after surgery. But first 3 weeks were awful. After that I eat them like candy. I am going to try and return to work in Dec. My job called and said I was going to be fired if I don't go back. :/ FMLA law I guess says only 12 wks of medical leave per year. Plus with no money coming in life is hard. So Hopefully I do not ruin my surgery. But I will be fine I am sure. I have had pain for so long that I will manage. ok, good night all!!

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@ gator mom , I noticed the Lyrica seems to have changed the nerve pain and it is worse and my ankles are swelling just like when I took the gabapentin. So I'm not going to take it anymore and am going to tough it out. Financial issues hit us all pretty hard but NOTHING is worth ruling your surgery to return to work too soon. Just be cautious and let your body determine when you will be ready for work. Good luck!

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Gatormom,
What sort of work do you do?

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@up and down, I am a school bus driver. Not the best job to have with back problems. I cannot take pain meds obviously once I start working again. Also, I will sit for 3 hours in morning with no stops and then again 3.5 more hours in afternoon. Very hard to sit that long. I pray I can still do it. I know I should do a different job, but I am not willing to work when my kids are home for summer or during holiday breaks. I was doing a little better finally and then fell last week. So I think I might have broke my tailbone. I will go back next week to Dr. I really am my own worst enemy. lol I keep hurting myself. Well, I better go, I hope everyone had a wonderful Thanksgiving! God is good and I can overcome any obstacle with his help. :)

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Gatormom,,,ouch ,,u took a flop,,I did that once,I took a nose dive right into floor/wall getting of the toilet one week after cervical surgery,I had to immediatly (1am) go to ER as per surgeon to have MRI n Xrays to make sure I didnt harm "all that jewelery" in my neck,surgeon said it was worth approximatly 20,000.00, ( rod,screws,plate disc,fusion).but luckily I didnt. I read all of you guys going back to work,,Im happy that you can,,My doctors said noway to me ever going back and I want to so badly (nursing), I had to apply for disability,it took 4mos. and I was approved.I know im one of the lucky ones getting approved on first try and so quikely.Yes we got hit very bad financially,I still receive doc bills,,I dont even open them, I literally have 2 boxes full, I put home bills and food first, every doc/hosp bill I could care less. If you guys cant physically go back to work why arent all of you appling for disability? All you need is a letter from doc saying you cannot physically endur sitting or standing for long periods of time due to your physical condition,,,thats it. Then you go to a disability lawyer with that one sheet of paper,,they ask you for names of your doctors and they do the rest,,everything, all I had to do was show up to disablities doctor exam that they make appointment for you and then you wait..I didnt have to do a thing,,they collect their fee if U win, and it gets deducted from your one years retro check that you receive,,the retro check is your one years salary,then your medical kicks in two years from the first day you visited a doctor for your symptoms,so mine starts this January,,my first visit to a doc for complaints or sciatica pain was Jan 6th of 2010. Cant wait to get medicare,the cost of scripts and co-pays is whats killing us.Then my next check is dec,every 3rd wed. of the month Your monthly check is based on what you payed into SS.On your W2 form it tells you.When I received that retro check my eyeballs came out of my head,I didnt beleive it when everyone said thats what you would receive, but its true.And its so worth getting a lawyer,their capped fee was 1,000.00. plus all filling fees and medical records,mine totaled about 3,000.00 but it was worth every stressless penny by not having to do anything but bringing in that letter,,I kid you not,thats all I had to do.The whole key to winning is to have it state no standing or sitting,if it states only one they respond by saying to find a different job that doesnt require sitting for long periods of time or vis versa. Anyway,,I hope you will B able to do your job, Good luck and no more falling,lol,Rene :)

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Hey again. :) I hear ya about the medical bills. Part of my surgery was not covered. The fusion was covered but not the artificial disc. so we took 25,000 out of 401k and had to pay up front. I am 40,000 dollars in debt from other medical bills over the last 5 years. Not just mine, I have not been blessed with healthy kids. 2 out of 4 have major illnesses. I just give 5 bucks a month to everyone and I try and ignore the bill collectors. I cannot get disability. I have only worked the last 3 years. I had been a stay at home mom for 15 years. I only got a job to help pay medical bills off. I looked it up and I think you have to have so many credits paid into SS. And the credits all had to have been from work you did in the last ten years. Only need 20 credits. But all the money I paid to SS was way back in 1990-1995. After that I became a mom and didn't work. I won't complain. I am blessed. I at least have a husband who has a good job. I figure as long as I can still walk I am doing ok. :) Somedays, I get really down and think "How much longer can I go on suffering" but then I meet someone worse off. So if I focus on my kids it helps. Doesn't give me much time to dwell on myself. Ok, well I guess thats it for now. :)

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Hi everyone,,,@ gator mom,,as far as your credits for SS, the years U worked way back should count.We are very similar about our hubbys making good $,I too am very thankful and.I also have a very sick child,wich weighs very heavy on my husband and I. every day when we look at her its the first thing we think about,,she has Cardiomyopathy,which is sudden death syndrome, she is monitored every 3mos at schneiders children hosp. which is a special hospital for severe sick children,she is now 25 and will B transfering to the adult section of the same hospital which is considered to be LI Jewish Hospital here on Long Island,its an hour away from our home but its one of the best Hospitals for the very ill.So when I complain of this chronic pain,she or my husband will say to me, you have pain but atleast you dont have to live with the worry of dying at any suden time,She is old enough now to really understand about her heart condition,,her concerns now are about wanting to B able to carry and have a child,The doctors have told her it would B a very high risk if she was to carry a child and if her heart would B able to withstand it, my other daughter who is 22 has offered to carry her child,Bcause even she doesnt want her sister to take that chance,she even offered to carry twins for her,But Stefanie says she wants to try to atleast carry one of her own and then have Nicole carry her second,,So this is the battle right now we R goin through with her,She is planning on getting married in January of 2014 and wants to get pregnant right away,the docs said if she realy wants to take that risk she has to do it B4 she is 30.we R very much against her decision but she says she wants to know what its like to B pregnant N have her own child,,we R very nervous about her being so persitant about this,even her sister is against.So yes when im complaining of pain I think of her and other people who have life threatening conditions,and think to myself how selfish I am to dare complain,,,But this chronic pain is a wicked curse that is so hard to live with both mentally and physically draining,it plain out sucks and Im tired of it,,why does it have to B this way?Spinal surgery isnt life threatening but the outcome definatly is life changing,your whole life gets turned upsidown.We will never B the same,the pain controls our life,limits us from living life to the fullest.My husband and I are almost at the age of him retiring with the plans of us being grandparents,traveling, and all that comes with idea that its our turn now to enjoy life,,instead now I get depressed thinking if I will physically B able to enjoy and partake in the planning of their weddings,dress shopping, planning there bridal showers, babysiting,,all of that goes through my mind which makes me sad,angry and thats when I cry or should I say sob so deeply.I cant even endur going to a store and walking more than an hour, or travel in a car,,so how am I going to B able to do what every mother looks forward to doing for their daughters , comes that time to prepare for their weddings,,It breaks my heart,I feel like Im being cheated out of it all, and I just keep saying why,,why me did this happen, what did I do to deserve this.I was a good person,A nurse who had a big heart that took care ofr the sick,why did God punish me with this outcome. My life was taken from me and I just dont understand. Sorry guys for such a pittyful blog..ill end it here, thanks for listening,,Rene.

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Mornin Gals,,has anyone heard from Trish,,or is it she still has company. starting to get worried,,So how is everyone doing this Sunday morning,,Its been a ghost town here since the day B for the Holiday,,,where is everyone,,Im tired of talking to myself,,haha. Hope to hear from someone,,Im getting a little lonely, and I cant keep up w/ all the nebies asking questions,,I need the rest of the SPINETTES to help me out here. Miss everyone,,,Rene :)

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Yep, this pretty much sucks doesn't it Rene. You said it all. I'm glad it doesn't hit me all at once often, although it does happen too much. I'm pretty much from the school of hard knocks, so when I do complain it's because there's something to complain about, I know most of us here are the same way. Luckily, this mood passes, or we have managed to fight our way out of it. But it still SUCKS.
Ending that note, hands up those who are giving the task of decorating for Christmas to someone else. ( My hand is up, we'll see how long it takes for it to get done...I'm not placing any bets at my house.)
Janet. :)

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Rene, gosh you really have a lot on your plate. This all adds up and makes your pain worse when you have worries. I'm going to step out on a limb here and offer some advice to you. I have come to really care about you and our spinette family here. When I read what you write here and how much pain you endure emotionally and physically I just cry; for all of us. The simplest pleasures on our lives turn into such painful ones. We are supposed to be enjoying. I have heard the strength you possess. You push through when you have too. Try to tell yourself the only thing we have to do is get through today. Don't worry about all the things of tomorrow. You are such a strong woman and everything; all your hopes and dreams, will happen but you have to accept they will most probably happen differently than you have envisioned. That doesn't mean you won't enjoy all the special times. You will but you have to create a new picture of how you can enjoy. As I write this to you I am telling myself the very same thing. We may be knocked down, but we are definately NOT knocked out! With your daughter, as scary as it is to let go and let her make her own decision, you must. As time gets closer she may realize its not worth the risk. All you can do is love and support her and her decision.
Got to stop writing fingers numb! ((( Rene)))

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Hi Spinettes,,sorry about that last blog,,It just all came out,I dont know,,well I do it was Bcause today was her doctor visit and I always wig out a few days b4 her visit,,im always petrified,,is this going to B the visit when they tell me her heart is failing or going to need that new heart.well the visit went normal as usual, again she asked the questtion about children and doc said its up to U. yA EASY FOR HIM TO SAY. Hes saying its up to u but no guarentee if u will surve,,,I will not,,actually I refuse to loose my daughter just bcause she wants to try,,This doc should B encouraging her to let her sister carry for her,,,my other daughter comes also to the docs, sisters r very close,she told doc she would carry for her,,and this idiot says well its up to U,,I could wring his neck.. Thanks for all your encouragement girls,now u know about another part of my life,,I guess we hold no secrets here. luv yas all Rene :)

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