Here we go again

Melinda, I do love the car. It's an Escape, less than 200 miles on it. I did like the older SUV's though, the new ones are like a combo van/station wagon. It feels like a car, but I'll get used to it.

As far as the Sojourn's, both my eye doctor and my ENT are leaving it up to my Rheumatologist.(who I now can't get into till the end of June)They both say that it's probably not going to make much difference in my treatment because except for the eye drops their the exact same. And my field of vision test was good.

My sister has an Escape and she loves it. She didn't at first, she went from a Tahoe. But now she wouldn't part with it.

Sandi, sorry about your Mom. Glad to hear that one of your sisters has stepped up. Hopefully it will take some of the pressure off you.

Yeah, there isn't much that can be done about Sjogren's. I have some gum that stimulates saliva and the eye drops. That's it. I discovered yesterday when I looked in a mirror that my eyes are slits by mid-afternoon, can't open them very much. I hope these drops work soon.

I hope I learn to love this car. It drives great but there isn't much room where the console is. I used to have a lot of space but this one doesn't. It's black and I teased my husband that it looks like a hearse. He told me no, it's a Bat Mobile. I'll go with that.

You can get special toothpaste for Sjogrens, and artificial saliva if you need it. A dry mouth is not a good idea for the teeth.

I know. I do have some but have not used it yet. My son's girlfriend is a dental tech and gave me some. Those are so temporary that I wonder if they are even worth it. The gum only lasts a few minutes. I have a drink with me constantly so I normally just do that. The worst thing is having to use a C-Pap with dry mouth since that dries it out even more. I wake up and my mouth is all stuck together.

I already have dental problems. Just had 5 cavities filled last week and have five more to go. Lovely Prednisone!

Sandi do you have a humidifier on your CPAP?

Yes, I do. When I turn the temp up though, I wake up so stuffy that I can't take a sniff. It takes hours for my nose to clear. I've played with the temp a lot and right now, it's best where it is.

I have such a high maintenance body that I can't keep up with its demands, physically or financially.

Of course my CPAP goes everywhere with me - when we went to Ireland I didn't want to lug the whole thing so left the humidifier at home, did fine since it is so humid there. So figured next trip, it was in the US, I didn't need the humidifier - HA!, that was the biggest mistake as I got so dry I got sick. Lesson learned. I like mine about 80°

My humidifier is built in, so I can't take it off. I usually have it at 78.

I haven't been using it the past few weeks, I'd better get back on track. I've just been too tired to put the darn water in it every night. The bedtime ritual takes too long!

In the ER again last night....stupid UTI again!

I've had my CPAP so long that filling it every night has become just part of my bedtime ritual.

Dan I'm sorry - hope it clears up quickly!

Interesting the 3 of us use a CPAP - I'm so used to filling the water too. How about those couple of nights a year the electricity goes out, that's a rude awakening.

My problem is that I get tired at bedtime, but then sit there much longer because then I'm too tired to get up and get ready for bed. I have to get my coffee pot ready, take some meds, do my eye drops, wash my face, saline rinse my nose, fill the C-Pap water, use the bathroom, etc. It ends up taking 1/2 an hour just to go to bed. Usually I do most of that and get into bed, then realize that I forgot the darn water and just say 'forget it'. I really should start doing some of those things earlier, but I'm not in the habit. My husband just gets up, walks into the bedroom and gets into bed. I miss those days.

I did use it last night though and it did make a difference. I woke up a bit less groggy this morning.

Sorry about the UTI, Dan. I hope it gets better quick and you don't end up on 20 different antibiotics.

Went to see my Urologist yesterday and they have the same fear. They gave me a script for a probiotic called Florinex. They said that they really don't want me on anymore antibiotics as I have been on too many. They are afraid that I am becoming resistant to antibiotics. So she said that a probiotic will "fix my gut". She said that they will do some more testing in 2 weeks to see if things have cleared up. I did let her know about my issues with dairy/yoghurt ect.. and apparently this one doesn't work the same as OTC probiotics so we'll see. (Sandi you and Melinda have talked about this a few months ago..)

Melinda, I hate when the power goes out! I feel like I'm trying to breathe through a straw. Then I wake up feeling like I'm choking.

Sandi, I've been using my machine for over 5 years now. I've had to adjust my night time routine, just to make sure that my machine has water and the mask is on my face. Otherwise I get a rude awakening from my wife....PUT ON YOUR MASK!!! she'll yell as she's waking me up.

I've had mine for about 3 1/2 years. I know I should take it more seriously. I know the risk of heart attacks and death go up if you don't use it. I know that a better nights sleep helps to break the pain cycle (so they say). I'm a slacker. I did use it again last night though. Two in a row! Both nights, I slept straight through which is unusual for me.

I didn't know that probiotics were used for urinary health. I thought it was just gasto. Let me know if it works.

Dan, I bought an "inverter" to convert 12V to 110V so I can run my CPAP off a car battery. You can even keep in your house a spare car battery or better, a boat battery hooked to a trickle charger.
When I travel, the inverter goes with the cpap.

I've had my CPAP for 10 years - thankfully our electricity doesn't go out often. What I take on a trip is an extension cord so I can be sure I can plug it in. Last time we flew it depended on the security as to whether they wanted it in or out of the case and whether they did the paper test on it. I still tell them there's a CPAP coming so they aren't surprised. When we drive on a trip I take distilled water with us - when we fly we have to get it at our destination.

Sandi I still sleep like cr*p. I read in bed before we turn the light out - so I just put the water in and then put my mask on before reading so I'm set when the light goes out. If you are the one who does the dishes get the coffee pot ready when you are finished and already at the sink.

I think what needs to be remember is that when the CPAP is not used your organs are being deprived of the oxygen they need and that is not good at all.

Dan we did discuss probiotics before - I'll need to look up Florinex, hope it treats you well! I'm still taking the capsule one in the mornings.

Well. Not to be difficult, but I sometimes drink coffee in the evenings after dinner is cleaned up. We drink decaf, so I can do that if I want to. :whistle:

And that is why I have a Keurig here in my "office" - to supplement the real coffee pot. Even decaf will keep me up at night because decaf isn't totally decaf'd.

Sandi you are difficult and you know it :evil:

Yes, I know I am difficult. High maintenance.

Decaf doesn't bother me much.

I just heard on the news a horrible thing about the Keurig's and mold. You might want to check that out. I actually worry about the same thing with my regular coffee pot which is another reason why I don't like to fill it too early.

Rob, Good idea on the inverter. What wattage do you have?

How does one find the balance between fun in the sun and Lupus kicking your butt? I ask because I got up today to a bad flare after going out and about with friends yesterday. I was even wearing long sleeves, sunscreen, sunglasses ect...even though it's already 85+ degrees here. I thought I had protected myself I still ended up with a nice Malar rash on my nose and cheeks along with bad joint pain. And so far, no bad reaction to the probiotic as long as I take a Lactaid with it.

I guess I'm just weird.(shocking!!) I can drink a whole pot of coffee and go right to bed.

Sandi wrote: I just heard on the news a horrible thing about the Keurig's and mold.

www.snopes.com/medical/toxins/keurig.asp

You are weird Dan - but I wish I could drink coffee after dinner!

Sorry can't help you with the sun & lupus and sorry you had a flare after being so covered up!

Melinda wrote:

Sandi wrote: I just heard on the news a horrible thing about the Keurig's and mold.

www.snopes.com/medical/toxins/keurig.as

Maybe, but I even worry about mold in my small coffee pot that I allow to dry out every day. I get paranoid about the slime that can accumulate. But then I am a germophobe.

Melinda, it cracks me up that you and I disagree about nearly everything under the sun. We have since day 1, but I still love ya! When did you join the PDSA?

Dan - some people are more sun sensitive than others and I don't know what the solution is. Erica might know better than I because I think she breaks out in hives immediately from being in the sun. I do not have any immediate sensitivities other than intense paresthesia (which I tend to ignore), but I think it catches up with me as the weeks go by as far as joint pain, etc... I have a pool and we go to the beach and I do not follow the directions. I was a sun worshiper before Lupus and am now a wannabe. I try to minimize exposure more than I used to and wear sunscreen, but I know I still get too much sun. The sun stirs up those antibodies.

I wasn't disagreeing with you - I had not heard about that so looked it up and the Snoops one came up. We disagree a lot but we also agree a lot - you and I would be good friends if we lived close. It was 2002 I think when son found the discussion group for me just hit the gutter after the tetanus booster and had WinRho.

Bet you do like your Escape! I have a 2007 Explorer.

That makes 13 years that we've known each other. Wow.

My husband has an Explorer. Too big for me! I prefer the smaller SUV's, but I guess it's all what you are used to.

I just saw my callout in this thread. I wish we could tag like in facebook...

Yes I'm very sun sensitive. I wear long sleeves (opaque fabrics not thin) and I use the block sunscreen not the chemical, and hat, and I also carry gloves with me and wear them for driving or if I'm out for a while. When I remember I also use a scarf, for example when driving to protect my neck and jaw area. My primary reaction is hives but you know with lupus, any insult to the body and the body overreacts. I can get lupus lesions or flu like symptoms and I sure hope I don't get a full out flare or big hunks of hair loss.

I try to stay indoors most of the hours between 9ish am and 6ish pm, especially in the late spring through summer months. I don't do fun in the sun. But I do go out early in the morning and then after dinner. When I'm out during the day I cover up and move quickly between car and buildings.

I was never a sun lover so it's not as bad for me as it could be. But I feel like I do miss out on a lot of activities.

When it's a gray drizzly day, that's my kind of day. I went to an outdoor daytime gumbo festival in Alabama on a day like that recently and had a great time, no problem. I still wear a hat and long sleeves even on gray days.

Today I was running errands this morning, with my protective gear, then doing stuff around the apartment during the midday. I'm meeting a friend at 6:30 to walk around outside.
Erica

Hey Erica! I've been thinking about you...almost e-mailed you today to see how the move has been treating you.

Thanks for the response, hopefully it will help Dan.

Thanks Erica for the info....I've always been out in the sun, bikes, swimming, camping ect.. But now if I'm in the sun for more than 15 minutes I get rashes pretty bad plus I get severe joint pain. And my eyes have become super sensitive as well. And even when I do cover, I still have issues if I'm out too long. What makes this worse is I live in the desert(so little shade) where we get sun 350 days of the year and the temps can soar to 115+ in the summer.(it has hit 120)

I do have some questions though... What type of sunscreen would be recommended? SPF? Is there clothing that's comfortable when it's that hot? How do you deal with the humidity? I ask that because we are thinking about moving to Oklahoma or ??(open for suggestions here).

Dan:

This might help. There are special clothes for people with Lupus that block UV rays.

www.coolibar.com/custserv/custserv.jsp?pageName=lupus

I can tell you that living in a place that has cold weather makes me feel worse. Fall and winter are horrible for me...I rarely go outside at all. The cold makes muscle and joint pain horrible; it's the dampness and temp that does it. I do much better in humid weather, believe it or not. Even rainy days do me in. Many people with Lupus say the same thing. You might want to research what others report before thinking about moving.

Hey Dan - anytime I come across things that help our situations, I like to share the info. This is an unpleasant subject, but I think it's worth discussing.

We've discussed urinary problems before. I don't get many infections any more, but I do have constant bladder inflammation that has the same symptoms. I always feel pressure like I have to go and when I do, there are just trickles. That has been going on for years and keeps getting worse.

I also have bowel problems. I fluctuate between constipation and diarrhea all the time. To control it, I alternate between Imodium and laxatives. This does not work very well because with the laxatives, I have no control at all so I take Imodium and the cycle starts all over. When I'm constipated, I have unbelievable bloating. For us, constipation can be caused by Norco and slow digestion caused by Lupus. I know a Gastro is in order, but I came across something that is actually working well.

I've been hearing so much about lemon water lately, so I decided to check into it. I've read so many benefits. One is that it's a natural diuretic, aids as an anti-bacterial for the bladder, and an anti-inflammatory. It also regulates the digestive tract and gets the bowel moving. I hate lemon, always have, but decided to try it. Within four days, my urine out-put is greatly increased and I've had regular, normal BM's for the first time in years. My hemorrhoids have also improved.

The problem is that I have so many problems with so many body parts that even one more seemingly minor thing greatly adds to so much discomfort. I'm sure it's the same for you. I can't believe how fast this worked. Bloating is completely gone. I tend to ignore so many symptoms and problems because I am so sick of doctors and more pills. I just live with it all. I'm glad I found a simple fix for this....I hope it keeps up.

Lemon water can also help with cardiovascular, atherosclerosis, immune system function, there is a whole list. It has also helped with acid reflux better than any pill I've ever had. Even though it is citric acid, it alkalizes the body and neutralizes stomach acid. The changes in just a few days have been drastic. It is also supposed to help with joint problems because it gets rid of acid in joints (that might take some time). It can also help with gout. Well worth the nasty sour taste in my opinion.

Now I just need to find something simple that will fix the other 93 problems that I have!

Hi Dan,
I really like Mineral Fusion spf 40 sunscreen. It's a blocker type, not chemical. That means it is effective immediately after you put it on, rather than having to wait a half hour, and it is supposedly much safer and healthier. It goes on a little white but the white quickly fades. It has a faint pleasant smell sort of eucalyptus, very mild and also fades quickly. It's available through Amazon and in some stores.

I haven't gone for the coolibar clothing because it seems really expensive and I'm not sure what it would get me beyond what an opaque fabric would do. I don't think there is any clothing that is comfortable when it's that hot and humid. I wear the lightest weight long sleeve tshirts I can find that are heavy enough to be solid not see-through. I found long stretchy gloves again on amazon, the brand I liked the most is foxgloves. I used to wear bright colors of gloves but I ended up liking flesh colored better. I keep one pair in my car. I keep a light weight scarf around that I can wrap loosely to protect my neck.

I'm not bothered by cold the way Sandi is. I have never liked hot weather or heat, I even don't use heating pads. The only heat I like is coffee and a hot shower. I did manage 5 years in Houston TX for grad school, but you know in a climate like that, everyone is avoiding the heat of the day not just me so it almost works out better for people like us.

Some people are not ok in the shade because of reflected sun but I seem to usually do ok if I can find some shade, then I'll roll up my sleeves, take off my gloves and hat, and cool off a little.
Erica