Ankylosing Spondylitis
@caroliewrites (205)
United States
October 18, 2007 1:25am CST
My 30 year old son was diagnosed with Ankylosing Spondylitis last year. This is a severe form or Rheumatoid Arthritis that attacks the spine. He is in horrible pain all of the time; it has fused his neck in a forward position; affected his hips, and now his eyes. It can, as it progresses, affect not only his eyes, but his lungs and heart. I went with him to the appt. he had with the eye surgeon. It was an awful excruciating procedure. He had to have shots into his eye to try and restore his sight.
He is not yet married, although he has a daughter from a previous relationship that he adores. He goes to work everyday. He's a profesional truck driver, however probably not for much longer. He can't move his neck, or see out of his right eye, and the pain is so disabling he can barely function but he will not take anything because of his driving job. We can not find any organization that will retrain him and help him have livable wage in the meantime.
I don't know how to get through this. I can't even begin to explain how heartbroken I am for him. I cry, a lot. Although I try my best not to let him see. Please, can someone help me know how to overcome my fear and heartwrenching pain. I pray, actually I beg the Lord daily for strength. Strength for him, for me, for my husband, his siblings. Does anyone out there have any experience with this debilitating disease?
4 people like this
6 responses
@braveheart07 (2601)
• Philippines
18 Oct 07
Honestly, I want to cry when reading this message from you. I want you to be strong and be positive. I know we can resolve this problem, as there are some people with this disease who also have recovered successfully
For now, only prayers and faith with God is our effective medicine on this matter. Miracles do happen and I believe on it. Be brave and do not lose your confidence. God is merciful and he will never leave you from this problem you are facing right now.
Rest assured that we are always here for you to pray for your son’s recovery.
God bless you and your family always!
@caroliewrites (205)
• United States
18 Oct 07
Your response to my message gave me a warm fuzzy feeling all over, like I have extended family who care about my family and offer up their prayers on our behalf. Thank you so much for your response. It gave me the boost I needed this morning. Thank you.
1 person likes this
@definitelyarun (210)
• India
18 Oct 07
I am reduced to tears hearing your story.I have learned about AS but one cant have an idea about how grave a disease can be unless they experience.It is said to have a genetic predisposition,but not always.The worst part is the lack of a definite treatment.
Pray to god!give him all the love.Bring your family together to support him, encourage him and make him feel better.AS can be painful but the mind is more powerful,so try to make him strong.For that, be strong yourself and dont let him know that you worry about him all the time. I will pray for him.God bless you all!
@caroliewrites (205)
• United States
18 Oct 07
Thank you so much for your message for your support and especially for your prayers. Thank you.
@carolbee (16230)
• United States
19 Oct 07
Sorry I can't give you any advice about the disease itself. Am so sorry to hear about his pain and agony along with your suffering as a result. I know it has to be very difficult. Have you tried to contact the AMA and see if they offer any suggestions as who might be a specialist in your area? Maybe a consultation without your son present would be of some help or see if there is a support group in your area.
Please take care,
Carolbee
1 person likes this
@caroliewrites (205)
• United States
19 Oct 07
Thank you so much for your concern and your kind advice. Yes, I tried to talk to his doctor and others but the HIPPA laws make it imposible. Thank you for the support group suggestion, I hadn't thought of that...what a good idea! Again, thank you so much for your compassion and empathy.
@aseretdd (13730)
• Philippines
18 Oct 07
My heart goes out to you and your son... just always remember that God will not give us anything that we cannot handle... the best thing that we can do is never lose faith that God will provide you and your son the answer to your problems...
I hope the government or a certain organization will be able to help your son...
@caroliewrites (205)
• United States
18 Oct 07
Thank you for your understanding and empathy. I do believe God will help my son and our family get throuh this. Thanks for renforcing my belief.
1 person likes this
@alamode (3071)
• United States
18 Oct 07
I don't have experience with this horrible disease, but I do have experience with loved ones suffering... you can't get away from the thing that is happening, and you can't get away from the way you feel. You can only deal with what is happening moment to moment, look for help and maybe some new answers everywhere you can think of, and give him every bit of the best that you have.
Hope is always there, so don't give up! My brother-in-law with terminal cancer opted for an experimental stem-cell treatment, and the 3-6 months 'sentence' they gave him has turned into a year of full and happy life. Each day they survive means a chance for things to happen, for new discoveries to be made, for the right doctor or the right treatment to be found.
Pull together with your family, take every opportunity to share yourselves... if the worst was to happen, don't have anything left to feel guilty for... sadness is painful enough. Just remember that you are stronger than you think you are, and you will do this... because you have to.
@caroliewrites (205)
• United States
18 Oct 07
Thank you. Yes of course you're right, I will get through this. Like parents everywhere, I love him dearly and his suffering is also my suffering. It's a little ironic that for some reason men are touted as the stronger gender. How NOT True. lol. My husband is a mess. Can barely speak through his tears when the time comes for action. I wait. I know I have to be strong, show my son love and compassion, but I do not allow myself to lose it....that is, until I awake in the middle of the night, begging for help... Only then do I allow myself the luxury of tears. Thanks so much for the compassionate response.
1 person likes this
@nikhilbansal245 (1)
• India
21 Oct 07
please send the lab reports of him at my email nikhilbansal245@gmail.com
