Stuff bothering me

[kimbo]

I have a long awaited routine visit to my rheumy.

My main bother is that my most resent ANA reading is still high at 1:1280


This is the same as when I was 1st DX with SJS in 3/07. I have not had it checked since then and am a little shocked that it is still high. I don't know why I thought it might have been less 3 years later. And I can not say why I have not had it checked since then.

I have had relatively moderate issues in comparson to so many on this board. Although I have been progressing with the dry eyes and mouth that were not a problem in the beginning. I have had flares of fatigue, brain fog, muscle fatigue, neck pain with head aches and swollen paratid issues. But when I read the issues of most of my sjoggy sisters and brothers, I know I have not had any extreme discomforts with mouth sores or joint pains or eye plugs needed or organ involvement .
I feel embarrassed that I wimped out on the plaquenil (extreme diarrhea) Especially now when I find out my ANA is still high.

I don't know I just felt like un loading my stuff. And I have anxieties about my Doc visit. I am embarrassed because I have advise to give , but yet I am bothered with my own anxieties.

I think my rheumy is ok, he is just not big on communicating and up to this point , I have felt ok with that. But because my antibodies are still elevated so, I want to hear some stuffffffff from him.

Also, while I am at it ..... I think allergies may be causing my eyes to mat up at night and weep gunk all day. They are so blurry Right now while I type this I can hardly see for the blurs. Very sore throat and gunk there also.

My mouth has been doing a funny thing...... when I eat it gets some kind of reaction that causes it to feel like velcro all over inside etched like surface, really yukie. But not burning.

I am really angry because when our family went to the Olive Garden the other evening and every one is enjoying the bread sticks, I make yet another attempt to enjoy them as I have in a distant past. It just gunks up in a blob inside my rough mouth.
And then I think of the anger I feel that those wonderful Red Lobster biscuits I use to enjoy so much and now can not.
I miss normal and maybe my anxieties about my up coming appt with my rheumy is causing me to be bothered.
I am tired.
I probably usually let these things pass, with out releasing on this forum.

Just needing a little encouragement. Maybe not feeling so good tonite. I may regret my whining tomorrow. Or I may think of some more stuff.

I may make this my own little twitter thread.   

love my sjoggie family. blessings kimbo

[Bucky]

Hi Kimbo,

I'm sorry you're not feeling up to par tonight. 

Are our ANA numbers suppose to go down?  Mine was 1:2560 ten years ago and it's STILL that now.  I've only had it tested those two times.

I know what you mean about eating bread . .. it's not fun.  The ONLY way I can eat any type of bread is with some sort of liquid to help it down.  I guess it's the new "normal". 

With spring weather here and the grasses growing and being mowed and the trees / flowers blooming if you have allergy problems to start with I think having SjS it only makes it worse.    Do you normally take allergy medicine?  Maybe it will need to be adjusted.

Sorry, I don't have any wonderful words of wisdom to pass on to you Kimbo.  Does sending a hug count for anything???   ((((Kimbo)))))

Hope tomorrow will be a better day. 

Take care . . . . hugs to you,
Bucky

[irish]

kimbo, I don't think that I have ever heard a peep out of you that sounded like a "whine" so I think you are long overdue. I can understand the not feeling well and sick of all of this garbage and want it to go away NOW feeling. It does help to whine once in a while and get it off your chest.

You do not have to be embarrassed about complaining on this site cause that is what we are all here for. I always say that this site has probably saved a lot of marriages cause we can let it all out here. I don't know what is going on with your eyes but have you tried warm moist packs on them. Also, have you tried using the warm water with baby shampoo and the q-tip massage of the lower lids. This helps to massage the glands to get rid of infection that may be there. Helps to do the moist packs first. I know that people have talked about this before many times on this forum so hope those who have had to deal with this will respond to you.

As far as the mouth goes I am wondering if you are having some type of infection or irritation. Are you having colored drainage?? There are the gels that you can buy OTC to squirt in your mouth to help with the dryness. Saltwater rinses are good for helping to loosen up any debris that needs to be swished out and away.

I know what you mean about eating the bread. I am not much of a bread eater but do have cravings at times. I put a lot of butter on it and have ice water to help get it down. It also helps to turn your head to the side (like you are looking across the end of your shoulder) when you swallow. I saw a speech therapist who helped me with some items because I have a swallowing problem related to myasthenia. This little trick of turning head to look across the shoulder really works well. It has saved me many times when I get stuck trying to swallow something.

Also, using a straw to drink helps the swallowing process too. I have found that the "cheap" bread at Walmart is so much easier on the mouth as it is so soft. It is the bread that is like home made and is 1.50 or 2.00 a loaf and is Italian style, parmesan, dill seasoned bread, etc. It is really nice and soft and so good with butter. Makes really good sandwiches with salad dressings for moisture. I like to buy the bread that you can slice yourself.

As far as the ANA goes, I don't know that it makes much difference regarding the number of blood tests you have. Once you have been diagnosed you know what you have. These tests can go up and down and can even be normal range at times. The really important thing is the symptoms that you are having. My immunologist seldom checks blood work cause he treats the symptoms not the blood as he says. If you are feeling worse and can't take the Plaquenil then maybe when you see the rheumy you can ask if there is another med that might help you. I took methotrexate several years ago and it was starting to work well but had to quit it because of my low t-cells. In fact that Christmas when I was on it I wore makeup and my pictures show a woman who was looking more healthy. Haven't looked that good since.

Generally it is a good idea to be on Prednisone when you start the plaquenil. This helps to control your symptoms while you are waiting for the plaquenil to kick in. I don't know how much Plaquenil you took or if you divided the dose, but you might want to discuss this with your rheumy. Sure sounds like you are needing some attention so I hope that all goes well at your appointment. Just take a deep breath and back up and punt as they say. It is really disheartening to have daily health issues as we all know. Just moan and groan and one of these days the sun will shine brighter. That is the way it seems to go. I will keep you in my thoughts and prayers. Don't worry about what you will think in the morning cause it is a new day. :DHugs Irish

[Rostradamus]

Kimbo , you have every right to want information from your doctor. The truth I've learned aftermore than 16 doctors and two hospilal stays (one 15 days no answers $72,0000 later) is many doctors aren't studied in Sjogren's. It's hard to make them listen to what info you have. I dred every visit and every new doctor. I also can't take plaquenil or any other med they've tried.Herbs and tricks are all I can use. Eating Hot tea or coccoa relax the throat., applesause help or fruit helps slide and push other foods down. I choke at times badly, haven't gone out . Don't want to embarrass my wife. Another trick is Fenugreek a herb and spice of the mediterrainian, used for centuries to increase breast milk. I'm sure if it changed the flavor someone would have commented on it. The only noticeable side effect is increased breast size, most poeple just deel with it. It also increases saliva flow and mucous, many glandular secreations, even tears. I also can't use Resasis and have punctal occlusions, talk about dry blurry eyes. Two 500mg.capusles morning and evening has me down to half the eye drops, only 20 or so a day! also my mouth throat isn't quite the desert and it seems to increase flow through the intestinal tract. For thick mucous to thin try Saw Palmetto., helpful in other was as well. Medlineplus.com ,  PDRhealth.com.  They don't have enough good answers yet, we must educate,learn tricks, help ourselves and others. Best of luck, it may seem lonely and isolated in the general world were they don't know, but there are a lot of caring people here I see and I'm a very "Newbee"

[wednesday mc haggis]

Kimbo

we all need to unload, were all here to listen to each toher.

i dont know about the blood levels honey, so i cant offer any advice with that im afraid.

  i do know about just avoiding certain foods, i just know would stick, or scrape at the roof of my mouth which is tender most of the time.

   im not surprised you anxious about your rheumy visint, espacially as he doesnt seem to want to communicate with you or allay any of your fears, some of these doctors are robotic in their manner , which just doesnt help anyone.

Im usually a happy go lucky type and even tempered, other week my mouth just went that dry that as i was eating my mouthful stuck their, even water wasnt helping for a second,everyone at the table are like..you ok ?? i think due to being 37 and embarrased i hissed back WILL YOU JUST EAT AND BLOODY IGNORE ME, then i felt horrible for shouting like a loon :-s

  we al need to offload, if we didnt we would go nuts i think, well i would,i feel lucky in a strange way, bacuse my eeys have been dry sinc ei was 7 and so has my nose, so i cant really remember it being any other way, this is normal to me, though my eyes had progressed over last 6 months, and theyre talking plugs now, shimmer was very dry, evaporation time 2 seconds, but that doesnt seem to be much more than an annoyance to me, but my mouth drives me crazy, feel like a stroke patient some days swallowing, and i ll take irish`s tip about the head tilting

  I know that kathy here reading a past post had big problems in the morning with her eyes, turned out she said to be a feathe rin her pillows allergy, i dont know if youve got feather bedding ?? might be worth a thought, i know i stopped using them as a kid, for they just seemed to make my eeys and nose worse, like the stoor from them irritated me, so i always use synthetic bedding since and thats helped.Hopefully its that and you might get some relief .

   I think we all have our days , its not the poor me`s is being human, and weve enough to deal with without guilt about it methinks.you give so much advice and support to ppl here, why should you ask for some back ?? its a 2 way street.

just wish i had more information to offer, but i do have a big cyber hug *HUG*, well all get there with help and support,  that we give each other, i know your post to me about toxic ppl in our lives helped me more than i can type, thankyou !


T x

   
   

[Linda196]

Kimbo, the ANA can be a bit puzzling because its based on a couple of actions of the immune system, each based on a different component of the immunoglobulins and different reactions of the white blood cells.

First, the system manufactures the antibodies when faced with an intruder ( or something seen as one)...unless of course that aspect of the system is messed up, and that's how we can have seronegative disease, the manufacturing plant is broken.

Next, the system attaches the antibodies to the appropriate intruders...unless again the "recognition" software is down.

Then, the connection of an antibody and an intruder triggers a stop signal...that can fail as well.

Finally, the housekeeping crew removes the used up antibodies, unless they go on strike!

So you can see that there are many possible reasons for your ANA to remain unchanged, even if your symptoms are being relieved, or at least controlled. The ANA also has a memory, and in some people, once it has reached a certain level, it remains there. ANA on it's own isn't a very specific marker, and things like ESR and CRP arebetter indicators of the state of your disease.

[missyb]

You know, it just hits us sometimes, I think at least me anyway, that it is really really really never going to just GO away! That's when it makes you mad. So I totally get where you are coming from. And I get irritated the same way because even though I do all these cra-zay-zy things, like not even EAT bread (which would be the one thing I would love to have more than anything, anywhere LOL), I still have problems sometimes.  Albeit not nearly as bad as before, but you'd think a girl could get SOME kind of a break from all of it. It's SO much work to do everything they say I need to do that sometimes it's exhausting! lol And to try so dang hard and just be grateful it it isn't as bad a before is a little hard sometimes too. Mostly I am but sometimes I just wish I could have everything feeling great. SO yeah, don't feel bad about getting mad. We are all mad right there  with you! 
Missy

[forest]

Hi kimbo,

I think I am having the allergy problems too. I went through a box of tissues a couple of days ago, then it went away, then it came back today. I get very irritable and my arms and hands start to shake. It is hard to tell what is thyroid related, what is from allergies and what is related to Sjogren's. Although I could probably handle on thing on it's own, the worst thing is that these things pile up one on top of the other. The only way you can feel better is to let it out! 

I can also understand the stress of going to the doctor. I usually end up forgetting to tell him something important at the 5 minute appointment that I have waited weeks for. I sure wish we could have appointments by email.

Scott

[Scottietottie]

Hi Kimbo      (((((  K  )))))

You KNOW this is a place to vent!!

Like you - I don't have this as bad as many others but it doesn't mean I feel well all the time. I can't eat bread now unless is smothered with more spread than is good for me - or dipped in something to make it soggy. I can't eat potatoes or potato chips (french fries) either - but I could a couple of years ago.

Bathing the eyeslids/lashes gently with diluted baby shampoo will help the gunk.

My bloods went almost back to normal after Plaquenil so maybe you could ask your rheumy if there is an alternative to Plaquenil that you could try, that may not upset you in the same way.

Everyone else has said everything else!

Take care - Scottie 

[cinmac]

Hi, I am new to this board and I have been venting all over the place!  I see a counselor from time to time and I tell her she has kept my husbands ears from getting worn right off his head from all of my complaining.  This illness sucks.  It takes away so many little things that you just took for granted until they are gone.  Tears, boogies and saliva-whoever thought I'd pray to have them!

So vent away.  I hear you and I second your thoughts.

Take care.

cinmac

[lynnmarie219]

((((( Kimbo)))))

Don't ever feel embarrassed to unload your feelings here....this is the place to do exactly that...and we all do it from time to time...I know it makes me feel better when I do!     I can definitely relate to what you are saying as can just about everyone else here I would think.....the feelings of lifestyle changes or others things we have had to change in our basic daily routines and the anxiety of upcoming appointments when looking for answers can be overwhelming!

As far as lab numbers....I have had my ANA/ENA tested two times over the past 5 (?) years or so and it was the same  1:640....SSA is negative and SSB is positive! Those didn't change although numbers on other labs completed do go up and down from time to time (SED rate, CRP, liver enzymes, etc).

I wish you lots of luck at your upcoming appt. Try to write everything down that you want to ask him ahead of time so you don't forget anything..I always get so much more out of my appts when I do this. And don't forget to let us know how it goes when you get done...we are here for you Kimbo!

[kimbo]

Hi everyone, thank you so much.

Yeah Lynn, I will start my list now I am ready to receive treatment.    Lovin your little hug bugs   

Hi Cinmac, glad you have joined us and thank you for jumping in on my pitty party. 

Hey Scottie, I think I would like to give plaquenil another go.
Scottie, we have a thing called gravy we put on bread, that is when it makes it easy to eat.
But it makes me angry when I forget I can't just stuff a piece of bread in my mouth and enjoy it. I'll get over it 

Missy, thank you for understanding. Being understood goes a long way.

Linda, thank you so much for keeping us all educated with the facts  Its like a road map and you always know where were at. 

McWednesday, thanks for the cyber hug I felt it. 

Roost, wow 16 Docs you have a journey to write about , I am glad your here to share.

Irish, our own True Gritt ,
I have been doing the eye wash thing It feels good . I also got some ointment to put around my eyes as they are raw from rubbing, I need mittens for my paws. I went to walgreens after church. And got the mouth squirt stuff too. I am coughing up gunk, I think its all drainage, maybe allergies and my sjogrens is rebelling. And my attitude stinks.
I think all of this is making me want to be prepared to ask for treatment and receive it when I go to my rheumy appt in a couple of weeks. Thanks Irish.

Buckey, my buddy , I took loratidine , because it does seem like allergies. I wish they made attitude boosters.

Love all my sjoggy pals. I will let everyone know re: the rheumy appt.   blessings kimbo

[Chickpea]

Dearest Kimbo

You NEVER need to apologise for telling us how you are feeling.  Nobody does, but especially not you because you're always there for other people, always sharing your care and love.   

Sounds like you're having a miserable flare with lots of yucky symptoms.  I hope all the suggestions your Sjoggy friends have made help, plus the stuff you bought today. 

Maybe you needed to get to this desperate point so that you were ready to accept treatment?  It's a difficult road to travel, but lots of us are there with you and we can help.  Maybe it would be worth trying Plaquenil again as Scottie suggests?  This time you'll know more about introducing it slowly, taking it with yogurt etc etc.  As Irish says, taking it with Prednisolone might make all the difference.  And if they decide to use Imuran or CellCept then we can help you with those as well. 

Lynn's right about the importance of keeping a symptom list/diary.  I'm sure you're like me and just forget how bad the bad times are.  It's not until I read my notes that I remember the relentlessness of it all, and the details that the doctors need if they are to get the treatment right.

Thinking of you and hoping this week's a better week for you - Chickpea

[Patze]

Sweat Kimbo,

Like the others have said, please don't apologize ever for having feelings...it's all a part of this board, isn't it?  You are a wonderful person and don't ever forget that!

About silent doctors, oh my oh my, you have one too?  Yeah, mine's the rheumy too, and he can be very frustrating at times too!  Oh boy, if you or anyone here cracks the code to get these guys to talk, PLEASE pass it along.

Please take care my friend -

Patze

[Pisces24]

Recently tested positive for SJS antibodies & see a Rheumy dr for 1st time on 23rd.
I had to take last Friday off as didn't feel good and wanted to see MY OWN dr who is only open 9-4 M-F. I had a nice talk w/him about SJS and my impending appt w/other dr. My gp put me on predinisone 3xday 10mg for 7 days and Loratadine 10mg. I am to continue Nasonex 2x daily. He said my "stuff I am feeling now" is mostly allergy related: very tired, nausea, achiness all over, sore throat & ears, and nasal drainage.
I get that way more certain times of year and when it builds to a certain point, I see the dr.  I've accepted a lot of my "symptoms" as normal for me and so waver a lot of times on whether to see the dr or not.  All this has got my wondering if it is SJS "flaring" or SJS and allergies. 

I guess I want to whine a little too. Got the 2 yr runaround from "specialists" 2003-5, which one finally diagnosed indolent lymphoma. Now w/SJS test, one dr thinks it was that all along. In the "working world" unless you LOOK sick, people think you are just fine even though you don't feel fine. I'm the type of person who 99% of the time if I am sick, I drag my butt  into work anyway. Thankfully I have a job and my reviews have all been great. But I worry about the SJS getting worse and my boss not understanding. Corporate america doesn't understand sickness in its employees or accept it very well.