Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group wife (me) needs support

I am new to this site, but my husband is not. He has not posted in a long time, however. He has AS and it is in high gear. I think by him not talking about it with others, he ignors the problem and can live another day in denial--yet pain. I am concerned about him, but right now I am needing support for me. We have 4 children, the youngest only 6 months old. My husband was diagnosed only 4 years ago and now can only look at his feet. His chin nearly touches his chest. His upper back is very bent. He is fused along his neck, his SI joints, part of his rib cage connecting his sternum and now it is hitting his back between his shoulders and he is in alot of pain. I worry that I won't be able to take care of him in the future. He is only 36. I worry that I will have to put him in a nursing home because I won't be able to help him physically. He is a large man (6'4"---although now he is 6'0" and chubby) I worry for our children because they see this loving teady bear of a man in true pain and that he can't play ball, take them hunting or fishing or do other things that their friends tell them they are doing with their dad. He works in the school system as the head of the system's computer department and other kids see him and they tease my 12 year old about the way his dad looks. BR (my husband) feels like a man stripped from his vitality and feels guilty that he can't "be a man" to his family. He tries to do things physical (like yard work and home repairs) out of guilt because he doesn't want me, the wife, to have to do-or can't do-and ends up paying for it in pain a few hours later. I am everything to our homefront right now and I am tired. I am a stay-at-home mom. I am a plumber, carpenter, mechanic, cook, psycologist, diaper changer, you-name-it-I-must-do-it person. I am so grateful that BR has a job that he can do and hopefully keep doing for many years. In this we are blessed. In fact we have many blessings, but again, I am tired and I need some boosting up.


Thanks for your help!

Karen

to KICKAS.

Glad to see that you found KICKAS, it is a great site.

You need to get your Hubby back on KICKAS.
I can not give you any miracle cures, I am still looking for them myself.

You will find most of us, slightly in denial, or you could call it stuborn. We refuse to let AS beat us no matter how hard it tries. It is good to see that your hubby is still working, you may think it is bad, but it is infact good. It keeps him mobile and will help take his mind off the pain occasionally, it will also keep him mentally busy.

I know how hard AS is, as I am fighting it myself. It gets you down when simple things become complex and extremely painful.

I managed to straighten myself out a few years back, by laying on my back on a bed with no pillow (in 30min doses, 2 or 3 times a day). It took many months and was extremely painful. If you are looking at doing it consult your Doctor first.

I also understand how hard it is on you, and believe or not I think your hubby does to. That is why he is still trying to help out. You need to be strong to help him.

You will find that most of us on this site have not given up and still have some mobility. Not many of us have been put in a nursing home (infact I do not know of any). So there is hope.

Judging from the description you have given, HYDROTHERAPY, investigate it. It is exercising in a heated pool with Physical Therapist. This may give him more mobility. This may even increase his range of motion. The water supports your body and allows you to do exercises that you would not normally be able to do. The heat helps relax the muscles. Believe me this will help.

Massage therapy would also be a good idea.

What medications is he on. There are new DMARD's which are helping many people Enbrel/Remicade/Arava etc. Might be worth investigating.

Is he seeing a Rhuemtologist regulaly. This is important.

Has he had any surgery done to correct his posture. Some people have, that is why I am asking.




The rest of my post is my normal welcome information and is well worth a read.

You will find this site and the people on it very supportive, knowlegeable and experienced. One of the great aspects of the site is that people share experiences.

Have you been through the normal battering of tests, XRays, MRI, Catscan. Have you had a blood test done, HLA-B27 positive or negative, Rhuemtoid Factor, ESR and CRP readings.


Look around the site, there is a lot of useful information, the following are things you should look closely at.

The NSD No Starch Diet is well worth trying, many people here have had great success with the diet, some have managed to come off all medications on the diet. If the diet works for you, then that is got to be better than taking medications. Remember though that the diet does not work for all of us. If you are serious about trying the NSD, try starting with the 3 day Apple diet first, I think it is a system cleanesing/detox diet. As to the NSD, there are differing levels of the diet from strict NSD to LSD to Gluten Free. My suggestion is to try the strict NSD first and migrate down to the lower levels experimenting with various foods and there effects.
Here are some links. (just click on them)
https://www.kickas.org/as_dietary_primer.shtml
https://www.kickas.org/asfood.shtml
No Starch Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=starch

As far as medications, have a look at postings related to Enbrel/Remicade/Avara these are relatively new medications to treat AS, the downside is that these drugs are extremely expensive and you will need to check if you are covered. Many people have posted great success on these medications.
Check out the AS Pharmacy Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=drugs

Myself, I think the answer lies in finding the right combination of Diet/Medication/Exercise that suits you, everyone is different.
There is a saying here "Use it or Fuse it", exercise is really important. Some suggestions are Yoga, Pilates, Tai Chi.
Hydrotherapy is also well worth trying.


One other thing, learn as much as you can, you may find your Doctors knowing very little about AS, and I suggest that you become proactive in your appointments, ie suggesting and discussing things that you find on this site with your Doctors.

Look around the site, there is a lot of useful information here.
If you have any questions, post them up and you will be surprised at the amount of responses.

Another thing to watch out for is Uveitis (a form of Iritis), which is common with AS.
https://www.kickas.org/images/upload/uveitis.jpg
If you get this see an eye specialist immediately, as permenant eye can occur if not treated.

The following link's are some light reading on AS.
https://www.kickas.org/cgi-bin/w3t/showthreaded.pl?Cat=&Board=support1&Number=153523&Search=true&Forum=support1&Words=update&Match=Entire Phrase&Searchpage=0&Limit=25&Old=1week&Main=153459
https://www.kickas.org/guide.shtml
This link also descibes the link between IBD (GI) and AS.
http://www.emedicine.com/oph/topic721.htm

Also if you go back to the main page https://www.kickas.org you will find the following sections with great reading information.
Medical Center
Diet Center
These sections are well worth reading.

Also if you need a good laugh there is the Jokes Forum
https://www.kickas.org/cgi-bin/w3t/postlist.pl?Cat=&Board=humor

Sorry for all the reading material.
Take Care
Wayne

Edited by wayne on 02/29/04 10:51 AM (server time).

Hi,

Welcome.........I crumpled about 2 years ago, after carrying my ex for a few years so I know how you feel, and it's when you get like this that your health can also be affected.

There is a support/carers forum on ths site you need to post a private message to one of the administrators to get access. I do not know who looks after that one, but I know there is one somewhere.

David

Hi Karen,

Wayne had the best advice.... get your husband back to Kickas!

AS can take its toll, I believe most of us have felt that at one time or another. But there is quite a bit we can do to make our life with AS better. Much to learn here.... new meds, dietery changes, stretching, alternatives etc.... Kickas has been a life saver for me.

Also there are people here that understand when it does not appear others do. Support is here to be had.

Take care,

Tim

Hope is only a post away with KickAS.

Hi Karen,
My husband has AS too and I relate to much of what you've said here

LizB110 is the moderator of the Friends and Family forum so perhaps you could PM her and ask to be added to the forum. We realise here at KickAS that when someone has AS the family must also live and deal with it hence, we too, need the support! that's why we have our very own private forum.

Hoping you get access over there soon, see you there!



Take care

Dear Wayne-
Denial = Pain!
If you can't find the self worth right now, to do it for yourself: Do it for your loved ones. Then your self worth will grow, this will make the burden easier for all. Then you will gain enthusiasim to seek & search for help you need. This inturn will make you feel better emotionally. When your better emotionally you start feeling better physically. I speak of experience! I am fused from C/5-L/2 then L/3-5 are fusing the whole SI area. I have only 3 ribs not fused. 14 of my vert. were fused surgically cuz I was at a 83' angle and slept hunched over at the kitchen table. My heart & lungs were being compressed. They feared heart attack from compression or a collapsed lung. Ironically my (L) lung collapsed as they prepped me for surgery. I was 29 ( this was after 7 yrs. of wrong diagnoses) finally relief. So much pain was gone after surgery.
Please get help Wayne!
Dear wife- I can't speak for what are going thru but; I had such guilt over my husband being the caregiver. I commend you for all your efforts. Keep talking to all of us here. Perhaps seek a support group in your area. Just to at least get you out of the house time to time. With no kids, to take a breather!
God Bless and a prayers out to all of you!

((Karen)) Your post touched me greatly. I have AS long with Lupus, RA and several other autoimmune diseases. It made me realize how my husband must feel. Sometimes I think it is easy to avoid looking at the situation from the other side. Partly because I feel guilty because of all of the things I can't do that I used to do and that I still want to do. Denial is very easy. I have finally gotten past it but I stayed there for a very long time. I will always think that if I had not stayed in denial for so long and had gotten the help that I needed I wouldn't be in the shape I am in now.

I hope your husband will come back to the forum and I hope you will also come often. I don't know for sure yet how I can help you but I care deeply.

Hugs and wishes for blessings.
From Oklahoma.
Possi

Hi Karen, and Welcome to KA!

I'm very glad that you've chosen to seek some support, as there is no doubt that AS affects everyone in the family. In my family, I am the one with AS, so I can only give you some insight from this side of the illness. It sure sounds like your husband has been hit very hard and suffers through a considerable amount of pain. And of course you suffer along beside him.

Sometimes, the scariest thing is to look too far into the future and yet I understand that it is impossible not to think about it or try and prepare for some of the realities. All I can say is that when it starts to overwhelm you that perhaps you need to switch and try to live one day at a time until you feel a little stronger.

I would hazard to guess that guilt is not the only driving force behind your husband's decisions to push himself, even at the expense of greater pain. Some of these simple daily chores and activities give meaning to our lives that can help us emotionally feel like we are still a part of the land of the living. Yes, some of the time it is guilt driven but not always. The other thing I wanted to mention (from my perspective only) is that at times denial can be a powerful coping mechanism. Of course we have to take breaks from the denial in order to best evaluate if we are fighting AS appropriately, or ignoring valuable alternatives, but having spells of denial are not all bad. Anything that will help us make it through the day has value.

I hope you are able to find all the support you need right now, and enough to help you both through the times ahead. I have a great deal of respect for you, and have no doubt that this disease takes it's toll on all. Try not to worry about your kids. They will love their Dad no matter what and will learn some life lessons that many children grow up without.

Many hugs,

mig

Hi Karen,

WELCOME

Hope you find this place as a source of information for AS and somehow you find ways to help your husband. As about support, you will always have it from all of us.

Take care,
Sinta

Thanks so much for your reply! Maybe you can help. He is on Enbrel, sees a Rhuemtologist every 3 months. All she does is just pat him on the hand and hand him more lortab. We can't find a physical therapy place with a heated pool. We are in the process of moving and when we get settled we will get a hot tub. He is using one now by going over to my Uncle's house and it is helping. My husband (Brett) is nearly horizontal from his shoulders up and he just had another car accident that is pulling him forward even more! He hurts. He can't exercise, or walk much or even sit in a regular chair. We took his office chair to church so he could at least lean back in it to get some relief and see people. His chin is nearly touching his chest and his neck is fused completely. His mid back is flaring up because of a car accident that just jarred him more than "hurt" him. However, everyone knows that trama can kick AS into high gear and that is what has happened. Anyway, I was wondering if there are surgeries that might straiten his neck and keep his back from pulling so far forward? How much recoup time and all that jazz? Any suggestions? We need help. I am so glad to hear that you know of no one in a nursing home! He is sleeping in an adjustable hospital-type bed that allows him to recline his back and raise his feet. This and the enbrel have been a miracle for him! Since the accident though, he is in new pain. I sure hope you can offer some helpful suggestions or even send me to someone who can.

Thanks a million!

Karen from Kentucky