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KathyW1958
06-27-2008, 02:59 PM
I am wondering if there is a relationship between Sjogrens serious sinus problems? I am wondering, because I constantly have a stuffy nose and am wondering about this. I keep forgettting to ask the doctor about this problem. Could anyone give me an answer about this.

Thanks,
Kathy

ColleenT
06-28-2008, 12:46 AM
Hi Kathy,

I have SS and i had a sinus op last year (before my SS diagnosis). I don't know if it is merely a coincidence that I have both or whether it is a scientific fact! My sinus problems are much better after the op though!

Sorry to be graphic but i use a saline solution to rinse my sinuses and it really does keep huge hassles at bay.

All the best
ColleenT

mnjodette
06-28-2008, 04:43 AM
You know, that's a very good question! I've had a lot of sinus trouble lately, and I wonder if it isn't related to Sjogren's. (I have that as well.) Some mornings (or even during the day) I feel so dried out and yet so plugged up, the pressure can be pretty bad. Really gives me a headache. I'm going to do a little research. There's a specialist in Sjogren's at the Univ. of MN Rheumatology department. She was a wealth of information, but had the bedside manner of a drill sargeant :x - really hard to take. Saw her twice and then I just couldn't do it again....
(I'm a wimp.....can't do the crabby doctor thing...I want someone to talk nice to me. :roll: )

Jody

KathyW1958
06-28-2008, 05:23 AM
Hi Jodi,
I can understand why you don't want to talk to a crabby doctor. I don't do well with them either. I believe that I did mention this to my Rheumatologist and he put me on Anti-biotics and Prednisone for a week. I think the Prednisone worked, but I am not sure, because I was on an antibiotic too. When I went off of both of them the symptoms were back worse then ever. I am going to look some more on the net too and see if I can find some more about this. Thanks for your advice Jodi. If I can find out some more I will post it.

Thanks
Kathy

hatlady
06-28-2008, 09:36 AM
Hmm...it wouldn't surprise me if there were a relationship between them - after all, you "dry out" with Sjogrens. And the sinuses like moisture.

I've found that if I use a neti pot with a saline solution (about 1/2 to 3/4 tsp of kosher salt per "pot") at least once a week in the summer (it is HUMID here) and daily - sometimes twice a day in the dry winter months, it makes a huge difference in stuffiness, nosebleeds, and even reduces the sinus headaches.

KathyW1958
06-28-2008, 09:59 AM
I think that these suggestions are great and I am going to try some of them out. I don't like getting nose bleeds and that has been happening a lot with me lately when I have to blow my nose. I bought some ocean spray saline mist and am going to try that too. It is weird, but the Sjogrens did not show itself until after I got the Chickenpox. The Lupus symptoms got at 100 times worse as well right after I got over with the Chickenpox. It is strange how a virus can create so many problems for people with Lupus. Well I am going to use the saline nose spray and see how that works for me.

Thanks,
Kathy

laurid8967
06-28-2008, 03:20 PM
Of course....count me in.. :wink: .I have had chronic sinusitis for years, under the care of a doctor at Mass Eye and Ear/ENT specialist. Mine even show up on my brain MRIs. This was long before I ever knew about my having Sjorgrens. A dentist professor at Tufts Univ Med. found my Sjorgrens when he looked in my mouth. I knew my eyes were dry alot and tears are really hard to come by (I can be bawling my eyes out and have almost NO tears come out), but I wasnt aware of my mouth being affected. Since then, my front tooth cracked/broke off at the bottom :shock: and I have damage to the teeth in the back. This BUMS ME OUT BIGTIME - as I (not to sound conceited) have always had REALLY nice teeth. :D Like, I would get compliments on a regular basis about my teeth. They just look different now - boo!! :cry:
But, anyway, I almost ALWAYS have sinus pressure and the only thing that helps is psuedoephedrine, which you know have to sign your life over to get because they use that to make methamphetamine. :mad: Its worth it though, but I try to use it sparingly as it decreases effectiveness with too much use. In the good 'ol days I could go through a box of 48 in less than a week - easy. Im alot more careful about what I put into my body today - Thank God. In thinking about it now though, the psuedoephedrine does DRY up your sinuses - but it releives the pressure, too, and really helps with those types of headaches.
Love Lauri

KathyW1958
06-28-2008, 03:42 PM
Hi Lauri,
I too use to use Pseudoephedrine until they disallowed anyone to buy it over the counter thanks to the Meth addicts. It makes me angry that a certain sector is allowed to cause this to happen. I sometimes get it for a perscription, but my doctor is funny about ordering perscriptions. He tells me to use over the counter decongestants. Oh well.

Kathy

laurid8967
06-28-2008, 05:08 PM
Kathy,
Here in Massachussetts, you can still buy it, but you have to ask for it (they keep it behind the counter now) from a clerk. Then they run your liscense through a machine to make sure you havent bought alot recently. You are allowed so many a month.
So, we can buy it, its just monitored by the state. A pain in the neck for sure, but at least its still available. Can you not get it at all where you are?
Lauri

KathyW1958
06-29-2008, 04:08 AM
Hi Lauri,
They use to sell it from behind the counter here too, but the stores here in town considered it to be to much of a hassle and opted not to sell it at all. Doesn't that just suck big time. Go figure though. I think meth addicts should be taken out and shot, but that is just my opinion. I use to tell my kids that if you have to do drugs then you might as well be dead, because that is not living. I guess they listened to me. They do not mess with drugs of any type.

Kathy

laurid8967
06-29-2008, 09:52 AM
As a woman in recovery, I actually feel somewhat badly for anyone addicted to meth - it is almost impossible to get off of. Dont get me wrong: When I see mothers with a boatload of babies hooked and neglecting their children, my anger rises as well. But I try to remember that methamphetamine is an incredibly powerful drug - FULL of poisons: Draino, psuedoephedrine, rat poison, etc. The brain is immediately addicted and currently there are no good detox methods for this drug. Surprisingly, meth is not big around here (Boston), but I know there are entire communities in the Midwest/South that are addicted. Its horrible.
As far as the psuedoephedrine goes, can you get in online? I have never ordered any meds over the Internet, but I think some sites are OK? You shouldnt have to suffer because a small percentage of the country abuses this helpful medication, you know?
I am fortunate too, my daughter is petrified of drugs...Thankyou God..We currently have a small epidemic here with Oxycontin and young people. There are tons that are hooked, cant afford the Oxy's after they are hooked and then turn to the cheaper - heroin. It is sooo sad...Two boys (20 years old now) who come from really nice families have succumbed to this addicition. One is currently sober and in treatment (Thank God) and the other appears to still be active....
You are blessed that your kids are safe from that - they have a good Mom!
Love Lauri

KathyW1958
06-29-2008, 09:58 AM
Hi Lauri,
I am sorry that I said that they should all be shot. I guess I was just frustrated about the Ephedrine and Meth connection. I realize that nobody intends to get hooked on any drug. I know I sure never intended too, but then again I did on perscription meds. I jsut feel that it is so sad that they could use a part of a medication that has so many medicinal qualities to create poison. It is really sad, big time.

Kathy

laurid8967
06-29-2008, 10:27 AM
No,no...dont apologize..I get REALLY frustrated too....Its the "ephedrine" which a synthetic form of speed, that helps keep them up for days...Unlike other drugs, though, the damage to the brain is almost immediate due to all those poisons. Who the heck thought of putting all those household chemicals into a "buzz"? Creepy...
Anyway, I know you have a history with prescription drugs - that was my downfall too...SOOOO dangerous!! Not if taken as prescribed, but, I found it impossible to do that, unfortunately.
No worries, though, on the other post...it IS frustrating that we cant get the medical help WE need due to others. Maybe your doc can prescribe??
Lauri

KathyW1958
06-29-2008, 11:04 AM
Hi Lauri,
I don't complain to much to my doctor about the sinus problems, because then he puts me right back on Prednisone and an antibiotic. I just try different over the counter decongestants and they work somewhat. I can not immagine how anyone can even think of putting household cleaners and poisons into their system, but they do it to get high and it is a shame. What is really bad is when you see a person with the pick pocks on their face and body from the Meth. That is really sad indeed.

Kathy

Jennyfoo
06-29-2008, 11:32 AM
I too get frustrated with the Sudafed regulations. It too have chronic sinus problems and post-nasal drip. It's not uncommon for me to woken up from a deep sleep because my throat is so irritated from post-nasal drip and I have to stay up long enough to suck 1/2 a Sucrets lozenge. Ick. I was on allergy meds and they didn't help one bit-Singulair. Nothing really seems to help except Sudafed and that only helps for a few days.

I have adopted 2 meth babies and am in the process of adopting a third. I am very sympathetic to the hardships that their birth-mothers have gone through and hope the best for them, but they have all had 4 children(3 different mothers) that have been removed by CPS. At some point these women should at least be sterilized so their addiction does not cause problems for their children. My 5 y/o is mildly retarded and both he and my 4 y/o have a lot of sensory integration problems. My 4 y/o has ADD and severe impulse-control problems when it comes to sensory seeking behaviors. The baby is doing very well at 8 months, but he had a rough start. It was his ultra neediness after his schedule and routine and environment were messed with that most likely caused me to go into a flare. That plus the emotional stress we faced when his b-mom came forward with b-dad's name and he was Native american(Indian Child Welfare Act meant we ran a serious risk of losing Jordan). Thankfully everything is good now and we'll be able to petition for adoption next month and finalize a month or so later.

KathyW1958
06-29-2008, 11:45 AM
Hi Jenny
I am so glad that you have adopted these children. I am so glad that the American Indian Tribunal did not step in and take the child from you. I think that they did not do this, because it is the father that is Indian and not the mother. I don't understand fully why that it is like that, but it is. I am glad though that you will be able to adopt him without any legal problems. God Bless you. I also think that women that mess with Meth and Cocaine should get sterilized, because of what it does to the children. I feel the same way about actively drinking alcoholic women that get pregnant and continue to drink, because of what it does to the baby. I guess we just don't live in a perfect world, but I am sure glad that you rescued these children.

Kathy

laurid8967
06-29-2008, 12:16 PM
Jennyfoo,
What a true blessing you are in this world to take on not one - but THREE - children with special needs. This combined with your illness makes you quite special, indeed. I dont know if I told you this already, but I worked as a social worker specializing working with familes of children with special needs. I know very well what goes into just a normal daily routine for you Moms - and Im truly in awe of Moms like you. Sensory intergration is very difficult to deal with - do your children receive occupational therapy? My nephew has Aspergers with sensory intergration and my best friends son is autistic. Actually, right now, she is going through a REALLY difficult time, as he has hit puberty, and has become self-injurious. He has never had this behavior before, and she is going through such a tough time. She is divorced as well, and has two daughters and her elderly mom to take care of as well.
Anyway, again, Thank God for people like you, who take on these precious little ones. Also, Im ALL FOR the steriliztion...I cannot be sympathetic to someone who cant manage to take a birth control pill everyday if they continue to use drugs. God Bless You, jennyfoo, theres a special place in heaven for Moms like you....
Love Lauri

Jennyfoo
06-29-2008, 04:03 PM
Funny you should mention Asperger's: my bio daughter who is 10 has Asperger's. It is highly likely that I do to, but I "grew out" of a lot of my issues- I am still antisocial, a bit obsessive, and have anxiety problems, but I manage just fine. My daughter was not diagnosed until she was 7. She showed signs back to infancy, but we didn't really know they were signs since she was so much like me and my hubby as a baby(he's most likely ASD too).

When I kept having miscarriages, adoption was a no-brainer for us. Adopting kids in foster care was also a no-brainer. I think if more people knew the resources available for children who have been in foster care and are adopted, that we'd see more adoptions through foster care. I was completely unaware of the continued stipends,etc when we first began Xander's adoption nearly 6 years ago.

Xander is the only one with occupational therapy since he gets it through school. He does well in a normal classroom and only has mild delays, but will be repeating Kindergarden this coming school year. We actually question the diagnosis of mild retardation and so does the school dist, but it's a good dx to have since it gets him services through the local regional center. With proper intervention, he's doing fabulously.

We'll see how Desi(4) does in school and if she has any delays. She is ADD, but no medication. So far she's done fine with preschool and one of the main reasons we caught onto Xander's delays was because Desi was passing him by in many ways.

Thank you both for your kind words. I believe that my place in the world is to make a difference in any way that I can. I love children and although it is tough at time, I would never change a thing. It's a good fit for me and my husband to be doing this. We always wanted a large family anyway.

KathyW1958
06-29-2008, 04:19 PM
Hi Jenny,

I am glad that you are taking care of foster children. The foster homes for the most part have gotten better then they were when I was 5 years old. I was placed in a foster home, because I got molested and my piece of crap father that molested me blamed it on my oldest brother. My twin sisiter and I were placed in a terrible foster home, where the foster father was a total Alcoholic and the old hag foster mother was mean and would whip on us every chance she got. I had a very bad experience in foster care. I am glad that you are a loving and kind person. After my sister and I left that home, we made sure that she never got to be a foster parent again. I guess we were not the only children that reported her, because they did a big investigation and she was told that she would never be allowed to have any more foster children as they deemed her unfit in the State of NY. I am glad though that you care, because foster children really do need a lot of love and understanding.

Hugs,
Kathy

Jennyfoo
06-29-2008, 07:05 PM
I'm so sorry your experiences in foster are were so terrible. My baby was neglected in his first foster home. I have no idea how someone can just sit a baby in a swing all day and not interact with them, cuddle them, love them. Jordan would be brought to visits with his b-mom and she'd have to bathe him because he was dirty. She was glad that he was placed with us because we took great care of him, but she was not happy that we were an adoptive placement.

Just to clarify, we don't do foster care per se. We are foster care certified so that we can foster to adopt. CA law is that we have to foster for 6 months at least before we can petition for adoption. We are getting lucky with Jordan and despite all the previous scares and hardships, his b-mom decided to go ahead and sign away her rights and stop fighting. We will be able to petition for adoption about 7 months after he was placed with us.

Before I got sick, we were planning on maintaining foster certification for emergency baby foster placements in the future- not to adopt, but to spare some children and some adoptive families what Jordan went through and what we went through in helping him attach and bond and feel safe and secure.

Jordan's b-mom is pregnant again and due sometime in the late fall/early winter. If foster care wants to place with us, we are planning on adopting that baby as well if I am stable and doing ok. That will make meth baby #5 for her. I just hope and cross my fingers that this next one is a boy. I can't imagine having another African American daughter's hair to fix with my hands being so bad. LOL! Desi's hair kills my hands! It's gorgeous, but it takes a lot of work to maintain in cornrows and braids and even more to maintain in ringlets or twists.

KathyW1958
06-30-2008, 02:06 AM
Hi Jenny,

I am sorry I totally misunderstood. I am glad that you are adopting the children. I am sorry to hear what happened to Jordan in that foster home. You are a very wonderful person to help these children out. I am wondering if that woman could get help to get off of the Meth? I hope that the baby that she is carrying will be ok. It is so sad. Five children to this sorry woman. I was only able to have two children. I wanted more, but that was not in the cards for me. I am happy for little Jordan. He will have a good life and he will bring you great joy. Good luck and I hope that the new baby will be with you as well and that it is a little boy.

God Bless,
Kathy