Request for dust and prayers please....

[iLander]

Dust to you! I'm sorry you're going through this, but there are always degrees of any illness. I wish you dust for the tiniest touch of it, that goes away completely with minor medication.

Dust! Dust!

 

[Dancing Fire]

Yenny...DUST,DUST,DUST headed your way. hope you get well soon.

 

[diamondseeker2006]

Oh, Yenny, I am so very sorry you have this to worry about! Please do call the rheumatologist daily for cancellations once the referral is made. Or do find out the name of another good one so you have two options for appointments. I think you live near a large city and surely there are a few good ones there. I'll be praying for you!

 

[yennyfire]

Oh, you all brought me to tears. It's been so hard to have DH away and no one to talk to (I didn't want to call IRL friends when I haven't said a word to my parents...just didn't seem right).

Thank you for the PS dust and prayers Zoe, Mayk, Sharon (canuk), JF, Junebug, Abby12, mogster, DS, Matata, iLander, Madelise, DeeJay, clueless, Maisie, texaskj and DF!!

Lil Misfit, wearing my rings on a chain is a great idea....I'll have to go get one!!

VL-I am definitely trying NOT to read into things, but I don't think that they'd send you to a rheumatologist for regular arthritis, not to mention that I just turned 40 (ugh)...aren't I a little young for that???

Ame, I am definitely staying away from WedMD!!

Woofmama, I am already at Emory and have a referral to one of their doctors...get this though. I called and the receptionist asked me if I was calling for a sick or well visit and I said "new patient for a sick visit". She said "we don't see sick people. You have to go to your dr. fora physical first".....ummmm.....I DID see my dr. and SHE referred me....hello??? She said that she'd email the dr. and ask him if he'd see me. I'll be calling as soon as they open this morning.

ETA: the only appt I could get with the above dr. was Jan 29th. Obviously, they don't care that someone is in pain and that 2 months is a LONG time to wait to get some answers. I told the receptionist I would probably call weekly to see about a cancellation. Maybe they'll give me an appt. sooner just to get rid of me!!

Rosebloom, I am happy to hear that your DHs autoimmune issues are "only" annoying...I can live with that!

I'll keep ya'll posted. Please keep the dust coming and thank you again from the bottom of my heart!

 

[AmeliaG]

My prayers are with you. Just take it one step at a time. At this point, the most important thing is to be comfortable with your doctors so if you're not sure about any of them, nows the time to get referrals and second opinions.

 

[Phoenix]

Yenny,

My BFF and her mom have polycystic disease too (I hope she doesn't mind my sharing this). My BFF has changed her diet drastically and she says that it seems to have helped a lot, for example she doesn't eat any meat (only fish and vegetables, fruits, legumes), and she's also cut out sugar, refined carbs and alcohol totally. She says it has made a HUGE difference to her condition and how she feels. In addition, she takes vitamins and some other supplements, all of which she got from her natural path person. If you're interested, I can find out more for you.

The above is a long term change of lifestyle. In the meantime, I am sending you truckloads of PS dust and hope you can see yr dr soon (keep calling) and figure out what the diagnosis is and what are the steps you'll need to take.

I also have an autoimmune disease. I suffer from Hashimoto's. I know we're not talking about the same thing here. But my point is that whatever you might have, whatever comes your way, I hope you can get it figured out soon and start taking corrective actions as necessary. With the right medication and care, you'll be ok. Talk away... we PS'ers will be here for you.

{{HUGS}}

 

[justginger]

Oh Yenny, I am sorry to hear that you are feeling poorly. I can imagine your frustration and anxiety having to deal with this on your own with DH away right now. I'm sending you giant sand dunes of dust from down under, with high hopes that a few fancy pills will fix you right up.

 

[SB621]

Yenny I'm sorry I just saw this post and wanted to say I'm sending dust your way!!! I really hope everything is ok! And definitely agree to not google! I know this is probably not helpful at all, but I just wanted to add since we both have little kids (though you might see this differently) at least whatever is going on -it is with you and your body. I have always said I can handle anything that happens to me and my body. If anything were to happen to my children it would be a whole different story. So no matter what the doctors say realize that you can handle it.

DUST DUST DUST!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[OneFifty]

Sending dust your way yenny! I hope you have an answer soon.

 

[JaneSmith]

This just sucks. I'm so sorry that this is happening to you, and while your husband is away to top it all off. I think you should confide in one friend even though you haven't told your parents. You shouldn't keep it all to yourself.

You have to be more careful with antinflammatory meds with PKD, but the GP you saw should be able to give you something to help before your specialist appointment. I don't know off the top of my head that rheumatoid arthritis (which is what it sounds like) is linked to PKD.
Go see the first doctor for more or different meds if your quality of life is so very affected.
Call the rheumatologist's office and say you would like to be on the cancellation list so they will call you short notice if a space opens up. Also tell them about how disabled you are right now and how it is affecting your ability to care for your children. They might bump you up as a more urgent case. Or not, their waiting list might simply be long.
Get the office of the first doctor to write to the rheumatologist explaining how it is affecting your quality of life and ability to care for your children. They might listen to a GP more than they will to a patient.
You are being very smart by staying off google.

And finally, wear your engagement ring on a chain, or treat yourself to one of those Tiffany charm enhancer necklaces to wear your rings as pendants. . Your fingers will be small enough to be covered in bling again.

 

[purplesparklies]

Sending prayers and positive thoughts!

 

[purplesparklies]

Sending prayers and positive thoughts!

 

[Sparklelu]

Buckets and buckets of dust your way and heres hoping for appointment cancellations!
Just want to say something, I'm not a Dr and my medical knowledge iis limited, but, my brother had a summer from hell this past summer. He too woke up with very swollen painful hands.He at first blamed it on the landscaping he was doing and his allergy to Juniper bushes. He too went to the dr and was referred to a rhumetologist. He was put on all sorts of crazy meds, steroids I believe. some helped some not so much. I will check with him as to what exactly. Long story short , his hands are fine now! They cleared up completly! No after effects either.
So while I dont wish you a winter like his summer, whatever you have may, hopefully, like his go away with treatments.

 

[yennyfire]

Thanks amelia, justginger, onefifty, and purplesparklies! Just knowing that everyone is here, listening, makes me feel better!

Phoenix, it's good to know that you are able to function with your autoimmune disease. Hopefully, I'll be the same. My Dad had issues with his kidney's my whole life, eventually was on dialysis before two transplants (the first transplanted kidney was never a great match and lasted 13 years). So, I grew up on a good regime for PKD. My Mom didn't cook with salt and used vinegars and herbs/spices to add flavor. No processed foods, only high quality protein and in specific amounts....etc. My doctor said that my kidney's are in great shape (other than the cysts!)...so at least I don't have to worry about that. Other than a nightly glass (or two ) of wine, I life an incredibly clean lifestyle.

Sarahbear, I totally get where you're coming from and agree with you...even though it makes me sad that this is affecting my kids, my heart would be shattered if one of them was sick....better me any day of the millenium!

JaneSmith, great advice. I'm already on the cancellation list and will call weekly to see if anything comes up. Good idea to call my GP. I sort of figured that if there was something she could do for me, she would have done it, but I have nothing to lose by calling.

Elisa, I'm so glad to hear that your brother is better and hope that the same thing happens to me!

 

[Skippy123]

lots of dust!

 

[lulu]

Sending you dust for good news and a quick recovery!

 

[lyra]

I'm sorry you're in pain and are under such stress right now Yenny! Please take care. I hope when you find out what's going on, that you will find a treatment plan/routine that works well for you.

My dear MIL has PKD and autoimmune disorder. The autoimmune disorder came first. However, she is 80 now, has not had a transplant nor dialysis, and still leads a very active life. Right now she is vacationing in Hawaii, and next year they are going on an extended European trip. She will likely require dialysis at some point. She has AMAZING jewelry! I believe she uses a special shank for her ER. She did that in her late 60's. She goes through difficult periods, but they are transient. She needs to slow down and rest more.

Being put on a medication for "life" is not a huge thing. I'm a lifer because of my diabetes. At first it was a bit of a shock, but really, it's just become a routine. Like taking vitamins everyday. Hope you get in to see your rheumatologist soon. Rest while you can.

 

[yennyfire]

Wow lyra, maybe PKD and autoimmune isn't so unusual?? Glad that your MIL is doing so well. I'd like to be traveling like that when I'm 80!! What kind of shank did she have? Was it adjustable somehow??? It looks like that's what I may need...

 

[TooPatient]

Yenny,

I'm sending you huge piles of dust and healthy thoughts.

I know how scary it is waiting for your appointment and the frustration with such a long wait. All of the rhuemetologists I called in this area had 6+ week waits. A lot were even in the 3-6 month range!
I'm sure it doesn't help much, but after your first appointment it won't be as bad. The wait for "established patients" can be as short as a week.

Can your son turn the cards over for you?
Another idea might be to do something like chess or chutes & ladders -- something that has pieces you're able to move (or is something he can move for you).

 

[distracts]

dust dust dust! And hugs! And bling sparkles! If you can't wear your rings, is there a place on your desk or wherever you spend the most time that you could put them so you can still see them? I find that comforts me!

I really hope it's nothing too serious - I have a number of friends with autoimmune diseases who live perfectly normal lives once they've been put on a treatment plan, so I dearly hope that works for you. hugs and dust and love coming your way!

 

[Enerchi]

Just wanted to pop in and say Hi and that I'm thinking of you and blowing you another blast of Ontario PS DUST down your way!! I'm hoping being able to get this off of your mind a little bit, could help, as well as wishing that maybe each day just gets slightly better.

I can wish, right??

Hang in there Yenny! We are ALL here for you! Day or night, you know there's a PSer able to chat with you!

 

[isaku5]

Yenny, I'm so sorry to read this. I'll send you tons of dust:



Tons of magic PS Dust coming to you

 

[honey22]

So sorry to hear you are having health issues, Yenny. The thought of kidney problems is very scary. I'm sending a ton of dust your way.

Any chance you can go to a different rheumatologist who can see you sooner?

Good question Mary. I tried to get in with a colleague of a friend of my sister's and his practice was closed, so the guy I'm trying to get in with is already my second choice. I hate to just pull a name out of the yellow pages, kwim?

Thanks Rosetta...you are a physician, correct? Can I just ask you one question (so I can avoid the WWW on this topic)? Can autoimmune diseases just go away on their own or am I facing a lifetime of meds?

Thank you Enerchi, I am certain your dust will work, by sheer force of your spirit! Thanks packrat and missy, I appreciate your dust and good thoughts.

Perhaps the colleague can recommend another doctor.

I'm not Rosetta or a doctor, but I know that some autoimmune diseases can go into remission (a time period where there isn't a flare up) and meds may not be necessary during remission. And please, I know it's hard, but try not to do a bunch of research on the Internet before getting a diagnoses. More often than not, you will needlessly freak yourself out. Sending hugs and more dust your way.

Hi guys. I have rheumatoid arthritis which is an autoimmune disease. Speaking in terms of RA, it's possible that RA can spontaneous remit but its fairly uncommon, especially for rhematoid factor positive RA (you have a protein in your blood that is linked to the disease).

I am RF factor positive and I have been told in no uncertain terms that I will likely be on immunosuppressants for the rest of my life. That sounds terrible but when it comes down to it, despite the side effects, the meds are a whole heap better than the alternative.

Fingers crossed that its not serious. Let me know if you need someone to chat too and good luck.

 

[honey22]

Im not going to be of much help but think I should point out that autoimmune disorders is a vary large field. Arthritis is one. Yes in some cases it can be crippling, but in most it is just a manageable rheumatism. I'm only pointing that out so that you might not over react to the auto-immune label. Labels are not diagnoses and diagnoses are fluid.
My fingers swell all the time, but then I use them roughly all the time. Often, I cant get my ring on. I take an aleve everyday and that makes a huge difference.
Meanwhile, I send you dust.

With all due respect VapidLapid, arthritis is not for most just a manageable rheumatism. I am a member of a young women's arthritis group and no one would classify it as such. The problem is that society sees autoimmune arthritis conditions just as you pointed out, however the impact on your life is significant. Its a daily struggle for many of us, we don't look sick all the time so people think it's something that we deal with easily but they just don't understand.

 

[NOYFB]

Just checking in on you today. How are you feeling?

 

[susimoo]

Yenny,

Sending you love and dust from across the oceans!!! You will have a 24 hours stream of PS dust with all the locations of your PS friends!!

Hugs to you, sweetie!!!!!

 

[yennyfire]

Ya'll are the best!

Thank you so much for checking on me again today Enerchi and Lil Misfit, you are too sweet!

I took the sage advice of the group and told one of my IRL friends today. It was as much of a relief to tell her as it was to tell you and she totally took care of dinner for us tonight...we just stayed at her house for pizza, but she cut up fruit and veggies for the kids (which is really hard right now) and got everything together. I simply handed out the plates of food when they were ready. I am so blessed to have so many great people in my corner!

Thanks isaku and susimoo! I'll take all of the dust you can spare!

Distracts, I am definitely going to put my rings where I can see them tomorrow. That is the next best thing to wearing them!

TooPatient, thanks for the positive words and ideas. We will have to get creative with the games we play. I guess Operation is out for now, though I can't say I'm sad about that!

Honey22, thanks for sharing your perspective on this. I appreciate your willingness to give me advice and feedback as I go thru whatever this is....if it's not too personal a question, are you able to function on a daily basis without being in pain or is it the kind of thing where some days are better than others and that the meds aren't an automatic cure all? In other words, if it IS RA, what can I expect (knowing that no two people are alike and my situation could be different from yours).

 

[MichelleCarmen]

Yenny,

My BFF and her mom have polycystic disease too (I hope she doesn't mind my sharing this). My BFF has changed her diet drastically and she says that it seems to have helped a lot, for example she doesn't eat any meat (only fish and vegetables, fruits, legumes), and she's also cut out sugar, refined carbs and alcohol totally. She says it has made a HUGE difference to her condition and how she feels. In addition, she takes vitamins and some other supplements, all of which she got from her natural path person. If you're interested, I can find out more for you.
{{HUGS}}

Yenny - sorry to hear about you not feeling good. I just wanted to add to what Phoenix said about diet...you may want to look at an elimination diet or similar. There are some foods (like nightshades - potatoes, tomatoes, etc.) that cause people problems. Also, there is also the option of trying a gluten-free diet. Not everyone has success with going these routes, however, it's always worth a shot!

Best of luck to you!

 

[honey22]

Ya'll are the best!

Thank you so much for checking on me again today Enerchi and Lil Misfit, you are too sweet!

I took the sage advice of the group and told one of my IRL friends today. It was as much of a relief to tell her as it was to tell you and she totally took care of dinner for us tonight...we just stayed at her house for pizza, but she cut up fruit and veggies for the kids (which is really hard right now) and got everything together. I simply handed out the plates of food when they were ready. I am so blessed to have so many great people in my corner!

Thanks isaku and susimoo! I'll take all of the dust you can spare!

Distracts, I am definitely going to put my rings where I can see them tomorrow. That is the next best thing to wearing them!

TooPatient, thanks for the positive words and ideas. We will have to get creative with the games we play. I guess Operation is out for now, though I can't say I'm sad about that!

Honey22, thanks for sharing your perspective on this. I appreciate your willingness to give me advice and feedback as I go thru whatever this is....if it's not too personal a question, are you able to function on a daily basis without being in pain or is it the kind of thing where some days are better than others and that the meds aren't an automatic cure all? In other words, if it IS RA, what can I expect (knowing that no two people are alike and my situation could be different from yours).

No problems sweetie. Sorry if I seem a bit doom and gloom today, I am actually at home sick with a flare up and not in the best frame of mind.

It really does depend on the day. Some days I am really good and as long as I look after myself (meds, rest, diet, exercise etc) then I can be ok. Then other days like today, I struggle to walk around without pain and the fatigue is mind numbing. Honestly, I have been thinking about wiping the mirror down and cleaning the toilet bowl and it's taken me all day to get the toilet done. I am mustering up the strength for the mirror soon lol.

Absolutely the meds are not a cure all, they will help immensly but it's often a case of its a good as it will get for some people. I deal with some degree of pain almost daily but I think you just get used to it. The meds I take are methotrexate (a chemotherapy drug taken as a low dose injection once a week) and Plaquenil (an anti-malarial originally, but it works for RA somehow, this is unclear). The mtx is as you would expect horrible. It suppresses your immune system so it attacks your joints less, but also leaves you more susceptible to infections, both viral and bacterial. It also causes liver damage over a long period of time, so you have to take mega doses of folic acid to compensate (like 10X the daily dose of a pregnant woman).

That said, I would never the stop the meds, I need them to function. I need them so the RA doesn't take over my life.

Every case is different and I am lucky to respond to the meds I am on. Last year my liver played up so bad I had to stop everything (and really cut back on my pain meds to let my liver heal) and I was a mess. 6 weeks I was off them and I could not walk properly around work, let alone exercise. However, earlier in the year I was doing 5-6 fitness classes per week so you can see that there are periods of time when things are pretty damn good.

If I can stress one thing, it is SLEEP! SLEEP! SLEEP! Don't underestimate your need to rest when are flaring, and don't feel bad about it. Its the best thing you can do for your body.

Its a very scary time and I really wish I could give you a big, gentle hug. Depending on your test results I can point you in the direction some online support groups, FB groups etc, that have been so very helpful to me.

I will be off now, think I should rest my fingers, typing is not the best idea today I don't think.

Hugs

 

[ksmom]

Yenny, I am so sorry for what you're going through and am wishing the very best for you. I completely agree with what Sarahbear says about being grateful that its you and not your children, but at the same time I imagine the fact that you do have children for whom you want to be able bodied and present makes you all that much more worried/frustrated now. I really feel for you and share in your frustration that you aren't able to be seen sooner- my son had to see several specialists as a baby and the wait for the appointments was crippling. Sending you well wishes and hoping all comes to a quick and healthy resolution.