Another rainy Monday here!!! Good day to complain, really could use some sunshine! Hoping to walk if it is not raining... Dr. says the one thing I can do is walk... my driveway is waiting for me :) Just need some sunshine to go with it, don't want to be cold.... another thing to complain about is how much my healing head itches.... itching is HORRIBLE! -zygy
I do remember the healing Itch....and it is bothersome to say the least, but at least we do know healing is going on as well as our hair growing back in : )
I pray u get some sun to get out walking, that is one of my favorite memories from my healing was my DH taking me and my walker to a nice park to walk around.....it was very nice to get out and to spend time with him at the parks I use to take my DD and her bike when she was little <3
My rant is the weather too. I'll trade our 90 degrees for your rain! We had a couple of cool days, but back into the heat again. Pressure in the air is messing with my head,( and a few other Chiarians in the area) a weekend of pounding and it continues....and Monday is the landscapers day to tiddy up the neighborhood. They seem to be adding the reseeding and prep to the grass on top of the normal. My head is not liking all the noises they are making :/ Thankful for how pretty they make everything look, but wish they could use quieter tools. This weekend it was the crop duster, he was a busy guys buzzing our roof around 4 am on Saturday and 6 am on Sunday. Earplugs going on the grocery list for this week! LOL!
Have a wonderful week!
Well it was not raining here, when I wrote my other post on this thread and it is raining now...so a dismal day......
My poor DH had a bad day yesterday I decided it was a good day today to bake some brownies to help lift his spirits when he gets home...nothing better on a cold damp dreary day then a housed warmed with the smell of fresh baked brownies.... : )
My rant this week is sometimes people get angry and I never seem to know y.....and I wonder is it my chiari that makes me unable to see what is going on around me?...hmmmm....sigh.....ugh....oh well,....better days ahead....
My rant is that it really stinks when you realize that there will never be a day in your life that you are not in pain....that is a tough pill to swallow. After diagnosis you keep thinking one day you will wake up and things will be as they were....a year later I am realizing with EDS that is simply not going to happen.
I know just what u mean....sooooooo many think go have surgery and everything will be fine...not so....just the change in weather tonight...it got colder again and my fingers hurt like someone smashed them in a door or something.....sigh,....I am 3 yrs post op and feel u there...
In the last week, I have received not one, but two unpleasant emails from "friends". Both could fall into the category of "my life ***** & you don't understand".
Needless to say, both are healthy & both work.
I know and understand what u mean, but not having Chiari they do not realize what we go thru and to them their issues r BIG issues...and may not understand our lack of understanding them either.....I think to get understanding we have to extend understanding....JMHO....
I agree it stinks and s----, but I really think we r stronger and can handle more then they can <3
Selma, I am so sorry your weekend got cancelled...I know you were looking so forward to it! Great pics tho!
Viv, I am so sorry that you have "friends" like this...you are right, you do not need this right now! I count my blessings for your opinions and outlook on here, as it has helped me many of times!
my monday rant is really a weekend rant...I made light of a situation about my life and my family history...and well, it set off fireworks! I was out on Friday night to enjoy an evening with DH when I recieve a message from my aunt and uncle which proceeded to inform me of how highly insulted they were by my comment, and continued to say how I dont get over things, how I need to stop placing blame on others, and how I have victim menality, etc. I went instantly numb. It ruined my entire weekend. I even offered avery "high road" public apology, to which they have not responded...but not only did my symptoms flair up, but I am truly feeling horriable about myself. I personally feel like the most optimistic person in the family, as my entire life has been about making lemonade out of the lemons...but now I just feel like maybe I dont really know who I am...in more ways than one :/
I am beginning to feel like everything I say and do comes out differently than I intended and maybe its safer to just keep my mouth shut...I just hate the feeling I have inside me now, have felt defeated and sickened to my stomache for days now.
I would say try to let it be like water on a ducks back...it is perception, I learned this yrs ago, I was HR at a retail chain and during Orientation I would get a few that said I was mean during the info session and others that enjoyed the way I presented it...y, bcuz everyone will perceive what u say and do differently no matter if u r singing songs of love and smiling they will see doom and gloom, it is more a reflection of them and not u !
This was exactly how I began to feel to and life is too short for some near sighted people to keep me from enjoying myself...too bad they only see the negative. As long as ur DH and u know what u meant...no worries...forget them it is their loss.
If u were a negative person, I think I would have noticed...and trust me u r not. <3 ((hugs))
Your right, its other peoples perception that I am getting hung up on. I dont want that to be how people think of me or see me. It just hurts more when its family, especially since I do all the reaching out, and then to have them comment such things. If it were a stranger, or even a friend I would be able to have a "whatever" attitude...but family somehow knows how to cut deep dont they? My husband told me that he thought it sound like there guilt coming through on their comment, since everyone wants to sweep the issue under the carpet and not speak of it like it never happened...all I ever wanted was an explaination...being told you are not your fathers daughter by his family because he couldnt face me (at 32 years of age) seems like something that needed a discussion....but now they see me as someone that wont leave things alone. Hello? I didnt bring this up out of the blue, and then say forget about it!
AAAHH! So frustrated!
But thank you for saying such kind things, its what I needed to hear! Thank You, Thank You!!!
No worries, I say them as I see them and I have BTDT...so I know how it feels...as I say on many that ask about what to expect with surgery..ask 10 people u will get 10 diff answers....
The same thing if u walked into a room and made a comment, then ask the 10 people what they thought u said and how u said it....u would get 10 diff answers....u can not do things to please others....u know ur intent and know what is in ur <3....so, u have to let those neigh sayers go....
I have come to realize that people who expect & *demand* sympathy--& have tantrums when they dont receive it!--well, it says more about them than it does about me.
People who are "untreated" can be very hurtful. (I never play the pissing game-- "my life is worse than yours"; I might & would lose here :-/ ).
The people who have hurt me recently have been jealous--can you believe it?!!
I actually sent 1 of them a book for no reason, because I was tired of feeling sorry for myself. I suppose that they have no clue how difficult that was to fit into my already overwhelmed life.
I had to memorize the poem "If" in 7th grade, which still comes in handy today. I hope it helps:
Sort of a weird /lol rant. Saturday I was counting the hours left on a five day flat on back lumbar drain to be clamped on Sunday morning. At bedtime I realized the end of daylight savings time and that there would be an EXTRA HOUR ON THE DRAIN, UGH.
Hi All what is ur rant or do u need to vent about this week?
I can only complain about this drastic weather changes, we went from temps down in the high 20's to the 60's....and it is these changes that affect my EDS....so my joints r hurting....how r u all feeling....???
Hi all....went to an intervention for my nephew...and was left with a HA...although we did get him to agree to go inpatient...yea !!
SO my rant is why can 't they help him figure out y he is using instead of telling him y he should not...that he already knows...I really feel he may have an underlying issue and is self medicating and it got out of hand....big time....sigh....
Selma, you nephew is lucky to have family fight for him. If they cant get him into an inpatient, is there anyone available to stay with him for an extended time? I ask because years ago, a friend I know was desperatly wanting to kick a cocaine addition. he didnt have insurance and his family was at the end of their rope. Their solution came in the form of a wonderful friend that was willing to keep daily meeting with him...sometimes dragging him out of bed, throwing him into a shower, and then sitting down with him each day. This friend was faithful, and had it not been for Mel helping daily the addiction may have never been broken. The drug addict is now a pastor for the last 24 years and helps support many ministries across the country and the world.
I know this isnt ideal for everyone, but sometimes I think we just have to think outside the box to find a answer. I truly hope an answer is given to your nephew soon. Breaks my heart that he is asking for help and our system is denying.
Viv and Molly, so sorry that this Monday has you in pain. I too have been having a difficult time the last few days...but realize unlike you- I have done this to myself. Working is taking a toll...and these crazy christmas shoppers! So grateful for 4 days off...my body needs time to recover!
Off to find my heat pack and some advil!
Thank u so much for ur kind post and suggestion....his older brother is with him right now....and they are still trying to over turn the decision. I offered for him to come here, but my DH said no as I have all the meds in the house he is having issues with...I got a box and they r all in one place....but, he is a big guy and if he loses his temper I could not hold my own against him...he did get in my sisters face already...drugs do things and make the person do things they normally would not do....
But thanks again, I really appreciated ur kind words and suggestion.
Smart Hubby! I wouldnt suggest that situation either, yes - they do make people do things they normally would never dream of doing! Glad the brother is with him...sounds safer. Sometimes a non-family member is good in those situations as to not cause a riff in the family...tension runs high in those cases and sometimes they feel like family is just ridiculing them...again, all the drugs taking over the emotions. I will be praying for them. Keep me posted on how it goes.
Thanks so much and I will....it is so sad he even took my mom's pain meds at Easter...we had no idea at the time, but we know he has no qualms of taking from his grandmother....so....I hope we can help get him turned around....my other concern is for my sister as this is killing her....this is her baby boy and her pride and joy....not that she doesn't care for her other 2 boys, but this one has the potential to do sooooooo much and is throwing it away. I deff will keep u posted.
I would love to have a day where I didn't think about Chiari at all. I'm feeling insecure today because I'm in job search mode but I'm not really sure if I'm up to life with a full-time job. I'm four months post op and doing pretty well. I know I can handle working, but I don't know what else I'll have energy for. I hate the idea of having to rest a lot of the time I'm not working. It's been nice being able to cook, spend time with friends and my partner, and take care of all of the little things that need to be done to make life work...I'm so worried that all of my non-work activities will become chores again...
Well u got back to work,....that is something of itself....and only 4 months post op...wow, I am amazed!
I am sure if u take ur time and slowly build up what u do, in no time u will have increased what u do with little to no after effects....it is amazing to look back at the recovery process and see just how far I have come and how far one yr makes and continues to make.
BTDT many times so I know just how u feel and I feel an episode coming...lol... sigh....I hate having to rely on others to get certain things done and they feel there is plenty of time, but I am the one that has to do it,...it does not seem to sink in...or it does but falls out along the way....I am not sure....
What a great thread. I ditto a lot of what others have posted here. I would say my rant about drs is if they dont understand something, instead of simply saying they dont know they put it on the patient - its just depression or like my first NS told me "to tell yourself ur problems are not caused by ur back and u will get better. Oh and get back to work bc you are just too young!" Very few drs actually take the time to listen thoroughly. They hear a few symptoms and just want to throw meds at you and move on to the next patient. And most dont like being questioned.
People that cannot see these invisible disorders and arent really knowledgeable about them are just ignorant - meaning they dont know any different. An actress Jennifer Esposito suffers from a very serious case of celiac. Its in the news lately as CBS put her off work from the series Blue Bloods and will not release her from her contract to work elsewhere. Instead of fighting, shes thanking CBS for what they've done so she can now be an advocate and teach ppl about celiac. Of course being an actress she is more able to do this as opposed to just a regular person She was on Dr Drew last week and he was so dismissive of her. It seems all these diseases/disorders that arent mainstream ppl just dismiss. I believe we have to stay strong and stick together in this so we can bring awareness to it. Dont give up!! I told my NS i would be happy to go around to drs ofcs to educate drs n staff on chiari and related disorders just as a drug rep does. I was humored but could tell that would never happen.
In the book The Four Agreements it states 1) Be Impeccable w Your Word -- speak w integrity. Say what you mean. Avoid using word to speak against yourself or gossip about others. Use the power of word in the direction of truth and love. 2). Dont Take Anything Personally - nothing others do is bc of you. What others say and do is a projection of their own reality. When you are immune to opinions and actions of others, you wont be victim of needless suffering. 3). Dont Make Assumptions - find courage to ask ?s and express what you really want. Communicate with others as clearly as you can to avoid misunderstandings, sadness and drama. With this one agreement you can completely transform your life. And 4). Always Do Your Best - your best is going to change from moment to moment. It will be different when healthy as opposed to sick. Under any circumstance simply do your best and you will avoid self-judgment, self-abuse and regret.
Of course some are easier to read than to put in practice. #2 has helped me immensely especially with family members who flat out told me there's nothing wrong with me. Im just a hypochondriac.
One final thing about the nephew w addiction. If he cannot get into a treatment center, a call to a local AA office can put him in touch with people willing to help. Some may even come to him. If alcohol isnt the problem they should still be able to give information on where to get help. Most addicts/alcoholics have a better chance helping someone than a family member, therapist, clergy, dr and sometimes yes even treatment centers. If he's ready to get help DO NOT wait bc of ins problems. Help is available. Also his mother or family members should seek out an Al-Anon meeting to get help for themselves and learn how best to help him. Addiction is a family disease. Sorry for super long post.
Thanks for sharing these words of wisdom....it is true easier to read then to put into action...but I am sure we all try.
And thank u for the thoughts for my nephew....the thing is it is over $3,000 a week to get him the help the Dr suggested....he was in patient b4 but not the right facility as the counselor was not able to get him in, now that he no longer see her, but a Dr he is able to get him in, but now the ins refuses...his last stay was 10 days...not long enuff...and not the right treatment...so, we r trying he goes to counseling... my sister and her ex go as well...they include the family....he was to go to Al anon or something similar and get a sponsor which he has yet to do...but we encourage him to all the time....
He was willing to go, only bcuz my sister said he goes in or out on his own as she can not take this ne more....she should have pushed this hard sooner...IMHO...but it is her baby and she has to do what she feels is best..
He knows he needs to stop, problem is he also likes doing them....
and he will steal from ne one to get what he wants.....
Unfortunately dear it sounds like he has crossed that fine line where he is no longer able to control his addiction. Therapy alone will not help. He needs others that have been through it. They understand him. They came through it. They can help him understand and give suggestions to him. He may be more apt to get better. Please have him call NA/AA central office. They can get people to come see him and start working with him... But only IF he is ready and willing. If he tries for family, it wont work. He has to want it. The sad truth of addiction is that some people have to die to get sober. Im sorry if that sounds harsh but its the truth.
Please know most drs only get 4 hrs of schooling in addiction. If they work in the field and they've gotten their job due to studies chances are slim of help. Anything is possible. I believe in miracles and have seem them happen in this field. But he's better working with someone that has walked in his shoes. A therapist thats sober. Again. He has to want it more than he wants the escape the drug gives him. More prayers are coming on this issud for you and your family.
One more thing. Al-anon is for family and friends of alcoholics and/or addicts. He would need AA or NA. AA is probably better to start at even if alcohol is not his drug of choice. There are larger numbers of sober people and many have experience with drugs, and mental illness (which leads a lg number to use).
Well he said that exact thing he did not like one of the counselors bcuz they were not recovering...they had no idea what he was going thru...
He has had both...and found fault with both...
I am sure it was NS he was told to go to after he was released from the last time he was in.....
He claims to have anxiety that his Drs have overlooked....and we r trying to get a Dr to see if he does, he claims he had to resort to self medicate....
As for dying being a way for him to get sober, it is something we all told him during the intervention, my older sister made him hold her son's ashes and told him how she did not want her sister to go thru what she did ( we lost my other nephew to a MVA yrs ago)
Geez your family has been through a lot. Early on he will find fault with everythingand everyone. A recovering therapist will see thru the games he tries to play bc he knows the games. He will call him on it which will tick off your nephew. Its best to just let him vent and let it go. Anxiety is common for addicts/alcoholics esp when detoxing or newly sober. Feeling sober is uncomfortable in the beginning users don't like to feel they like to escape from feelings His claims of anxiety may be real but may also be a ploy for more drugs. Drs rx xanax like candy. Its highly addictive and can be just as hard as getting of heroin. Its in the same family. Klonapin stays in the body longer but can still be addictive. He just needs to careful. Blessings to u n urs.
Me too sweetie. It just takes time. As for the rx drugs. Theyre very easy to get. My kids tell me all the time about kids in their schools using One friend of my sons even admitted to me he was selling for a while There's also a drug called bars, which these kids can get very easy somehow Bars are extremely high doses of xanax in one horse sized pill. Another name is zannies. Same thing as bars. Anyway if you have other ?s u can msg me. Dont want to take up the whole rant thread. Lol. Have a great night!
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