Can Anyone Relate?

• By ggmac
• Reply 2892665
• March 7, 2012 at 6:39 am
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Hello, first of all, soryr to hear about your friend that passed away. May her soul rest in peace. I have a daughter who has SS, she is 2 years old and has had a few crisis in her short life. When i read your message, i litterally broke down in tears. How awfull? i just couldn't beleive it.
My experience has been the opposite.. we live in the UK in a town where the ethnic population is rather small so the hospital don't get to deal with a lot od patients with SS,however, the treatment we receive is excellent. My daughter (together with other children and adults with SS and other conditions that require them to need medical assistance quickly) has an open door policy when we go into A&E. we don't have to cue, we are seen staright away and attended to.
There are some nurses and doctors who don't have a clue of SS and can be a bit passive but i make sure i draw their attention to the severity of the pain my daughter is going through. What i am trying to say is, u need to be assertive, stand up and demand the care that u deserve. read up and know your rights and challenge them on the sometimes stupid decisions that they make. I do that all the time and i have found that at the end, i always ger results.
I know wanting to stand up for your delf is the last thing u want do do when u r in pain, but u need to focus that pain on demanding what u need at that time.
Hope things get better for you and hope u are crisis free for a long time. my daughter has been crisis free now since oct last year (5 months) - big deal for her cos she usually has one every 2 months or so. keeping her very warm seems to be doing the trick.
I wish u all the best!

• By Carmel9603
• Reply 2900100
• March 9, 2012 at 8:27 pm
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I can relate to not being tended to as quickly if your not screaming crying, Yes they dnt understand that what we have trained ourselves to do is keep our minds occupied with other things to try and escape the pain. So yes we are not always yelling at the top of our lungs. I also have been told about taking to much of my pain meds,and I let them know very clearly that for most of my life I never took anything, yet after my last child things changed! I am far from a Junkey or and Addict! You need to make that clear to everyone you come in contact with who wants to indirectly let you know that, that's what you are, & what your doing, all though they have never and will never WALK A MILE IN YOUR SHOES!!! You have to be secure in who you are, and not feel guilty about anything. and yes that takes a lot! however you have to remember you aRe not living for anyone but you and your loved ones! I fight hard all the time, to cope with my illness, to not get depressed, to enjoy everyday that I am Blessed with. I know that GOD is real. They said I wouldn't be a mother...I am! They said I wouldn't make it past age 18....Yet I am Still Here! They tell you a lot of things yet you have to decide HOW YOU ARE GOING TO LIVE....YES LIVE!!!!! YOUR LIFE! Rember that people fear, & judge what they dont know, so all you can try to do is Educate them, so that those that come behind you may have it A LITTLE BETTER! Hold on to your Faith. Hold on to your Dreams, and know that YOU ARE NOT ALONE! Peace & Blessings! If you ever need to talk, please feel free to contact me

• By monamie2
• Reply 2900600
• March 10, 2012 at 1:46 am
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FOR; VICKY,CARMEL,GGMAC'S LITTLE GIRL,MY DAUGHTER AND ALL SICKLE CELL CHAMPIONS.
I am a mum who goes through torment when my child is in crisis.ggmac and carmel are both right.I for one,live in a country where there is so much passiveness from those who have no idea what you are going through.Vicky,you have to understand the regimen that works for you.Read as much as you can on your usual medication and understand their side-effects to be sure you keep in good health.Like ggmac said,keeping warm helps a lot and I want to tell ggmac that early discovery is helping you a lot like it does right now.Carmel,you are very right about other people never understandibg the extent of the pains.it is horrible!How did I know?Out of desperation,I once cried out to God to let me bear my daughter's pain.She was going through so much that I could not bear it any longer.........3 days straight in unbearable pain,I really was desperate!My daughter eventually got better and we were out of the hospital.About a month later,I was holding a jug of boiled water when I suddenly,involuntarily let go of the jug,a searing pain tore through my right arm and I was Screaming.......'someone please cut off this arm,just cut it off,GOD......!'My kids came running,I wasn't even aware some of the boiled water had splashed on me,the pain in my bone had over-shadowed that.It lasted just about 5 minutes and went away while I was still shouting without taking any medication.I wondered throughout that day about what happened.'could I have hit my hand against something without remembering?'Two days later,I was just waking up when it dawned on me that I asked God to let me bear my daughter's disease the last time she was in crisis! I burst into tears,I cried for so long knowing that such has been the pain my girl goes through sometimes for days on end.I had the pain for such a short time and all I wanted was to have my arm cut off.I started begging,praying to God,asking Him to forget I ever asked for such!Yes,I am a mum,but I can not bear the pain for my child.I am humbled by what you guys go through and I assure you,no one could ever know the extent.Each person needs to have a coping strategy,no matter what it is.Whenever my girl is in criris, she sings praises and when she squeezes my hand to indicate I should join her in singing,I know the pain is very intense.My daughter is on a new regimen and crisis is almost non- existent by God's grace now.I have been helping other mothers and patient to get the same regimen and we are getting good result.I can only commit each of you into the hand of the One Almighty God who alone can totally deliver and encourage you that the battle you fight,the way I understand it,is not for the faint-hearted like me.Like you have said to Vicky,keep faith.I have raised a campaign in my part of my country,educating the youths,pleading with the government to do free testingfor people and establish sickle cell clinics.I am a mother but all I can say is 'I SALUTE YOUR COURAGE'

• By Ihatesicklecell
• Reply 2907098
• March 12, 2012 at 8:18 pm
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Yes, I can relate. I am not the type to jump to narcotics when I am in pain and my doctor knows that about me. I also work at healthcare and hear the nurses refer to us as "drug seekers," mainly because most sicklers do call for pain medication on the dot when it is due even if they are not in pain. To be honest, those types gives the rest of us a bad name. Not that I know when someone else is in pain but one can tell through vitals signs and through assessments. And I know of 2 sickle cell women who go to the hospital just to get drugs, one even left against medical advice because she wasn't getting her pain meds the way she wanted. What some sickle cell patients do not realize is that narcotics are addictive and in high dose, yes, they can kill you. They all surpress the respiratory system, they can also cause liver damages. I personally think that the sickle cell does enough damage to my organs I don't need drugs to speed up further damages. I hate them because I hate the way they make me feel. They may take the pain away but they make me feel horrible. Go on WebMD.com and look up drugs, especially the narcotics and see some of the side-effects. They are not good, in my opinion. However, if you are in pain and you tried other pain relieving methods such as heating pads, repositioning, etc then yes you are entitled to pain medication. Doctors and Nurses do not share your body so they cannot tell you whether or not you have pain just by looking at you. If I were you I would report them because that is consider neglect in care. If you need to go as high as the Joint Commission or AHCA then do so and see if they will discount your pain again. Bet you they won't.

• By Erin825
• Reply 2961933
• April 4, 2012 at 7:44 am
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My daughter is six months and we took her to the hospital on what we thought was a crisis, The doctors said she was fine and the next day we had to take her back because she was still in pain. I hated that and it made me so mad that they just dismissed her like it was nothing. Now I call her doctor directly so that he can meet if need be. She is doing pretty good now.

• By moreny
• Reply 3006224
• April 21, 2012 at 8:15 pm
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I am truly pained to hear your experiences. I do agree with everyone. stand firm and be in their face. preferably if someone can go with you to be an advocate for you that is good. I live in the chicagoland area and i will go to the hospital to be an advocate for anyone who needs me to. feel free to contact me.

• By moreny
• Reply 3006229 · In reply to 2900600 by monamie2
• April 21, 2012 at 8:17 pm
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monamie - can i ask what regimen your daughter is on that works for her? i ask because at the UIC Sickle Cell Center there was a research study on decitabine that apparently worked well according to some of the people who were on it that i spoke to but the study was ended.

• By daddyshome
• Reply 3007116
• April 22, 2012 at 10:10 am
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Yes my wife has sickle cell and she is often judged as soon as we get to the hospital. If I don't stay with her doctors or nurses have been known to say cruel things to her, there is a lack of education when it comes to SC in the health field. A doctor threaten to kick her out the hospital if she continued to disagree on the pain medicine, nurses have told her she was faking and that she could walk while in a crisis. There are countless stories of her mistreatment. You aren't the only one, that's why we MUST depend on God. If you are in a pain crisis you have to take your meds, I am truly sorry for your issues with the hospital and whatnot, however you aren't alone!

• By motherofchildwss
• Reply 3008537
• April 22, 2012 at 10:44 pm
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I have heard so many stories of the misunderstandings when it comes to treating sickle cell crisis" in the emergency rooms. The stories from more older sicklers 40's and 50's are astonishing when sharing their stories from childhood. Yes im sure at times there are abuses.....pain meds can be used for a hustle on the streets. But for most all Sicklers, THE PAIN is no hustle. Everyone handles pain differently....but in the end, PAIN IS PAIN. As the mother of an 8 year old with sickle cell, I have a pretty good idea when its time for relief. When you have tried everything at home and its time to go to the hospital...try to stick to a particular hospital that know your history.... have your (or your loved ones )morphine dose (ask your personal doctor) locked in your head so by the time they call your doctor they can start immediately on your relief...who gives a D*** about the staffs personal opinion when YOU are on top of your treatment. Be not discourage warriors....Be encourage!!

• By halogirl
• Reply 3011270
• April 23, 2012 at 10:48 pm
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WOW Vicky, It is so sad to hear what you all go through, Im pretty new to learning about SC My heart bleeds for you all Wish I could change it and save everyone from this pain and the Medical staff, There is no reason for them to act like that when someone is in pain, I dont have SC I am not Black But people I sure do hurt for you all, I read these cry's of help and Pray for you and cry with you as I read them, My Best friend is Black and Has SC he suffers badly sometimes almost died a few times and it breaks my heart when he is sick I wanna search the end of the world for a cure as I am sure all your mamma"s have wanted to do also for you I recently took him to an Omish Dr that I have went to for at least 20 years the Dr was so excited to work with him I had previously talked to the Dr about him he was excited when I told him he said he had done some studying on SC but never had the opportunity to work with anyone with this asked to bring him to him I did He told my friend everything about him, My friend was shocked he knew so much about it , the reason I had taken him there was because of his last crisis he just couldnt get his strength back and had no energy what so ever Dr gave him several herbs and within days He was Thanking me all over the place about how good he was feeling, he called it Omish Speed lol said he hasnt felt this good in a long time When I get the info on these herbs from him I will post them Just so you know what they are and hopefully they will help someone out there He did say at first he thought they may be a little strong for him but he didnt give up and he said he just cant believe how much they helped him He definatley has his MOJO back lol Well God Bless you all You are in my thoughts and prayers and Lord willing I hope there is a cure found for this soon I Love you all halogirl

• By halogirl
• Reply 3011289
• April 23, 2012 at 11:00 pm
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Im Back to post the Herbs made by Pure Herbs LTD 1 is called W W 2 is called Barberry these were drops And another was hawthorn Berries these were capsules but they sure got his energy back on track You would have to find out how much of it to take for yourself though Hope it works for you too

• By rayray-ss
• Reply 3232976
• July 23, 2012 at 3:12 am
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Yes I can relate because my son is 4 and he sometimes don't cry out when he is in pain he just get quiet and lay around but he will tell u if you ask him so when I take him to the er they act like I just felt like coming down there

• By rayray-ss
• Reply 3233016
• July 23, 2012 at 4:24 am
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My son has ss but I had another son that had sc who was born in 94 &died in 94 at 4months&3wks old because drs wanted to act like I didn't know when my baby was sick I called his dr 4hrs before he died to tell her that he didn't act or look like he was feeling good like he felt good but because he wasn't crying or had a fever she disregarded what I said told me it was late and he was probably tried give him some fluids and bring him in to see her in the morning it was 1:00 am then he died at 5:15 am so with my son that has ss I don't care if I have to go to the hospital everyday or the Sicklecell clinic I will if my kid seem like he sick better safe then sorry and I insist on them checking his wbc and his hg levels the drs don't know my baby like I do and they will help him or I won't leave

• By rayray-ss
• Reply 3233019
• July 23, 2012 at 4:28 am
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My son has ss but I had another son that had sc who was born in 94 &died in 94 at 4months&3wks old because drs wanted to act like I didn't know when my baby was sick I called his dr 4hrs before he died to tell her that he didn't act or look like he was feeling good like he felt good but because he wasn't crying or had a fever she disregarded what I said told me it was late and he was probably tried give him some fluids and bring him in to see her in the morning it was 1:00 am then he died at 5:15 am so with my son that has ss I don't care if I have to go to the hospital everyday or the Sicklecell clinic I will if my kid seem like he sick better safe then sorry and I insist on them checking his wbc and his hg levels the drs don't know my baby like I do and they will help him or I won't leave

• By grantd2089
• Reply 3238055
• July 24, 2012 at 11:45 pm
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Sadly, I too can relate. I have been living with SCD for 22yrs now and my crises have only begun to get worst after being doing so well for 7+ yrs on Hydrea. My last hospitalization a month ago, I waited in an ER for 6 hrs before seeing a doctor, and I my pain started a week ago when I was out of the country on my honeymoon (I guess they figured I've been in pain for so long anyway what's a few more hours, never stepping foot there again). However, I don't remember it being that way when I was a child. My mom would just inform the on call doctor we were on our way and we were in immediately once we arrived. It's sad how we lack the professionals with the knowledge to help us fight this disease. I have been blessed to have good hematologists when I was younger who told me to be active when in pain, like walk around, or do something to get your mind off of it and it does help or else I would go insane and doctors who told me, when in severe pain use narcotic as last resort and given me non-narcotics to help minimize the pain in the meantime. I get so tired of people saying how I can become addictive to such strong drugs; I know it has addictive properties but they do not know me. Now my current doctor is telling me I have to take a narcotic daily to help with the pain, I'm sorry but what type of normalcy am I to have if I am constantly drugged. You will probably always experience the "non-believers," (the doctors who need to see why your having pain to have pain, the nurses who need to hear you scream to believe your in the worst pain of your life, the others who think we are just drug seekers, etc) but we know and God knows our struggle and at the end of the day that's all that matters. When I go into a hospital I may be in pain but I ask a lot of questions and I call the shots because its my body and my health they are dealing with, be sure to do the same; know what medications is going in your iv, know doctor names, etc. For example; I have a rule of no more than 2 sticks per person, because I have difficult veins, if a nurse couldn't find it the first two times its time for a professional. At the end of the day your paying for the service, make sure you getting taking care of.

• By Luvnuallways
• Reply 3445062
• October 9, 2012 at 6:06 pm
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I only have trait as well as my daughter but we have crisis just not as bad usually. My daughter won't take anything. She says pills are for old ladies. She is also very stoic. I watch her in such pain and I can't do anything. I finally take her just to ask for fluids and have to fight for hours for them. Not even asking for narcotics. I know it's not as bad as what you see when the child has the full blown disease but I can still definitely relate. The suffering is unimaginable and the helplessness as a mother is eve worse.

• By kcofer09
• Reply 3549457 · In reply to 2961933 by Erin825
• November 16, 2012 at 3:27 pm
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Your story is very similar to mines. I was diagnosed with sickle cell anemia when I was a baby (I am now 21). When I was a baby I used to go into a painful crisis, but this was before my mom found out, since I was young I couldn't talk or handle the pain so my mom told me I used to hold my breath to try to stop the pain and they would have to blow in my face to make me start breathing. My mom would always take me to the hospital to figure out what was wrong but all the doctors said was that i was doing it for attention. Since the doctors didn't see a problem I never got treated. It got worse and worse until one day I flatlined bc of my very low blood count and oxygen levels. It wasn't until then that the doctors finally found out that I had Sickle Cell Anemia.

• By 1sweetladyt
• Reply 3558649
• November 19, 2012 at 11:41 pm
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Hello everyone.. Unfortunately Ssa is a disease mainly in the African American population. If anyone could be affected by this disease then I personally think people wouldn't feel the way they do. When someone who is in main that has cancer nothin is questioned. It just Frustrate me that people don't understand the disease so they criticize it. I recently just lost my son. He had Ssa. God bless everyone and never give up.

• By MABREH
• Reply 3559841
• November 20, 2012 at 12:01 pm
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please u need not to suffer in vain at all....simply get in touch and i will educate u on how to eat simply grains like sorghum and millet grains prepared as various foods. this will vastly improve ur health and drastically minimize the pains and crises like it did for my daughter who is now enjoying life. she is a happy girl now and the whole family is happy indeed.

• By MABREH
• Reply 3559861
• November 20, 2012 at 12:09 pm
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to all those sickle cell sufferers get in touch and i will enlighten u about the foods we eat in africa which makes the crisis non existent as long as victims stick to those traditional foods...like sorghum millet, cassava, plantain, yams, cowpeas, groundnuts, and lots and lots of green leafy vegetables....my daughter is enjoying life very well now at 15 yrs and still growing strong....very strong....dont suffer needlessly.