Hurt, sad, and confused!
I had a phelb yesterday. My inlaws where here visiting and waiting for me when I got home. I was alittle out of it. So while they think I completely asleep on the couch, I was in and out of sleep. They start saying things, like whats the big deal, isnt a phelb just like giving blood? When my husband tries to explain its a little more than that, they start in on well how much blood is taken. They said they heard it was just like donating! What Im faking it? Then when I do actually wake up the first thing my husband asks is " How much blood do they take out! I said liter! F.U, poeple!
When I ask my husband about it later he says they were just curious. Then I said really, because the last time they were in town, your Dad said . "Isn't it just the same as donating blood" Thats not a big deal! Then at dinner his Mom says her brother has H.H too, and he "donates every week". I was too weak and tired to get into it, so I ate, and went to bed! Fyi her brother has liver cancer, and is an alcoholic. Which can cause H.H. I have never met him, and she barely talks to him or sees him, so I cant imagine she knows anything about his condition, or what he is going through! This is going to be a long weekend!
When I ask my husband about it later he says they were just curious. Then I said really, because the last time they were in town, your Dad said . "Isn't it just the same as donating blood" Thats not a big deal! Then at dinner his Mom says her brother has H.H too, and he "donates every week". I was too weak and tired to get into it, so I ate, and went to bed! Fyi her brother has liver cancer, and is an alcoholic. Which can cause H.H. I have never met him, and she barely talks to him or sees him, so I cant imagine she knows anything about his condition, or what he is going through! This is going to be a long weekend!
Replies
Stephanie, What blood I have left is boiling!!! I wish that I was there so that I could speak for you while you recover from your phleb. We all come up against this garbage at one time or another and it is infuriating. Everyone wants to know how much blood is taken and they think that when they give blood it is no big deal so it shouldn\'t be for us - WELL, they are not dealing with the illness that requires REGULAR phlebs not just once in a while when donating, or the debilitating symptoms that come along with HH, or the fact that all of that goes on for year after year after year which makes having to manage all of that just to sort of function as normally as possible so very exhausting. I want to say to those people - how about doing just a tiny bit of internet research so that you will learn a little something about what your loved one or friend may be dealing with. Maybe they should know that left untreated we will die from this. Maybe they should know that just because we may look good on the outside that is no indication of how we feel on the inside and certainly is no indication of the fact that we are literally rusting from the inside out. That just because we do our hair and put on make-up and dress well doesn\'t mean that we are faking this. And, just because we may have a part of a day or even a whole day or couple of days in which we have energy and are able to hide our symptoms so others who don\'t have this will feel comfortable around us doesn\'t negate the serious nature of this disorder. Maybe the people around us should stop being so judgemental about something they know absolutely nothing about and just believe and support us and take care of us when we need it and then be happy and grateful for the times when we do feel better in between the difficult times. Maybe they should take us out for dinner when we can manage that so that we don\'t have to cook or clean up, or bring something in for dinner when we can\'t manage to go out. Maybe they should know that regular phlebs can cause irritability because our body is so often put into survival mode having to quickly create large new amounts of blood because we loose SO MUCH SO OFTEN.
Stephanie, think about printing this out and letting your husband and his parents read this - maybe even choose a few of the discussion posts from so many others going through what you are going through so they can see that you are not the only one and that others are dealing with really harsh symptoms so that they are not at all functional. Your family should feel VERY grateful that you are functional alot of the time and they should love you and care for you when you need them. After all, isn\'t that what family is supposed to do?
To Stephanie\'s family from Kim: I also have HH and I can understand that you do not have the knowledge about this condition that your wife and daughter-in-law is dealing with. I had never heard of HH myself until last October but have been dealing with the symptoms and getting progressively worse as time went on. I am a former executive in multi-national apparel manufacturing and I have a law degree. I have always been high energy before the symptoms of HH finally caught up with me. I still wear make-up, style in hair each day and wear fashionable clothes. My home is well cared for as are my dogs and husband. This condition causes a multitude of symptoms that some of us have and others do not. I have arthritis, joint pain, thinning hair and nails so now I must have professional manicures - not only to look nice but because the thinning nails can be painful. I am exhausted. I must manage my days to get things done. I have been meeting with two state senators which means that I have to park at our state capitol, walk up the large staircase to get into the front doors, walk through to the elevators and then once I reach the right floor I must sit down for 10 to 15 minutes to allow my pounding heart - which has been damaged by the HH - to stop pounding so that I can talk during the meetings. I used to run through airports and traveled non-stop around the world for work with non-stop energy. Stephanie has her own symptoms to deal with and I hope that you now understand that if she is exhausted or what ever she is dealing with, she is not faking or being dramatic. She is doing the best that she can but sometimes this condition is truly debilitating. Only one time in my life have I ever been sick and that was in 1987 when I contracted the Tiawan flu. I am not a sickly or weak person. This is not a disorder for the faint of heart and we need our loved ones to understand that, listen to us, believe in us without judgement. From what I know of Stephanie she is a go getter, beautiful business woman who is talented and bright. Please support her and love her so that on her good days she can shine like she always has before this HH hit her. Thanks for listening. Have a great weekend with your son and Stephanie! Kim
I would like to add to that because I feel bad, I HAVE the support of all family and friends and my mom is on this site somewhere learning about this disease. I am 42 years old and have just got back from my weekly phlebotomy, I am also in a wheelchair now because the iron has attacked my joints and muscles. It attacked my gall bladder last summer and I had that removed. This disease used to be called \"The Silent Killer\" because so little has been known about it, people were dying because no one knew what was wrong with them or how to treat it, Thanks God, Stephanie got diagnosed before she ended up with liver cancer, pancreatic cancer or diabetes, i hope this helped in some small way, I just had my phlebotomy so I am going to sleep! xo Lori
Kim, I wrote back, but somehow it didn\'t post. So I may be overlapping, or whatever.
Kim, I want you to know what you said to me was like something from an angel. I was sitting in a parking lot crying, and drinking beer, beer, wtf? I\'m a wine woman! All kidding aside, It has been such a horrible day. I didn\'t even want to go home. I had one appointment, and I just wanted to get through it! It\'s just like you say we get all fixed up, because god forbid we admit we feel like Luke warm hell! I put on the make up, and I fool people. It\'s true, makeup really does cover up almost anything! Kim, you really helped me today, Thank you, and Thank you for reaching out with your limited boiling blood left!lol. I am going to send this post to my family and friends, because you say it all! I also tell people how much this support group is always there, it only takes one! Kim, I\'m so impressed you are working with two senators! Lets get them tested, celebrities too! Your success, intelligence, and strength will help us all!
Stephanie, Thank you so much! I can\'t tell you how much it means to me to be able to help a little! I understand the wanting to just cry sometimes and you are certainly entitled - especially right after a phleb with in-laws visiting and then the attitude you are dealing with. I even understand the beer! Sometimes we wine women need a heavy fizzy beer and even junk food to go with it! My husband is home and my wine is waiting so I need to go - please take care of yourself and don\'t do too much this weekend. Your in-laws are adults so they can take care of themselves. I will check back often this weekend - message me if you need to vent. Let me know how it is going. I\'m here for you Baby! Kim