I had a really good summer. I think the hot humid weather is the best thing in the world. Unfortunately, I think the cold humid weather might be the worst thing in the world. It’s cooling off here and I am (rapidly) losing ground.
I see my new rheumatologist next week. I am really against trying new drugs and hoping I’m not headed in that direction. The bad thing is, I can no longer get by with two Naproxen a day and I don’t know why.
I’ve done nothing but improve over the last year with Plaquenil and the Naproxen. Now and then I would have to take an extra Naproxen, but not it’s necessary, daily. This has changed.
I’m sure how much of a problem this is. I know I’m in trouble, over time, taking these drugs. But I don’t know how long “time” is. But it sure is depressing to not feel my toes again and to have them freeze and to not want to touch anything in the refrigerator or the freezer and on and on and on as the symptoms spin out.
I’m sporting a Lupus rash now as well. I can still do everything, I just have that tipping feeling. And I did have to spend about ten hours, laid out, a couple days ago.
It feels like cancer coming back after a period of remission. It feels like a huge unstoppable wave. A person just can’t get on top of something they can’t get on top of.
For now, I’m keeping on. I typed without being able to feel my fingers for years. So I can do it. But I’m getting a little scared of the (winter) humidity. Cold and wet…Capricorn, right?
Also, my son is coming. How awful he has to see me sick. We’re in a situation now when there is no telling when I might see him again. I am going to try my best to make this not apparent. But these current transits are wicked – I’m not sure what I can do.
There is a huge upside. A year ago, I was undiagnosed. I have a lot better understanding now, it’s just weird.
For example, I’m cold or whatever and I was stuck in a wonder of it all. It’s confusing. I’ve dealt with this for year, of course. But I’ve not dealt with it lately so it just sort of stops me in my tracks. Saturn Neptune. I have little idea where the burden comes from.
But anyway, eventually I got one of those microwave neck rings (Thanks, Jilly) and put it on my neck. I was just walking around with it and just warming that part of my body saw the symptoms that had dogged me all day, relent. How weird is that?
So I’m going to go to the doctor and try to glean any information I can as to why and how, small measures can make big differences. It’s strange and interesting.
(((Elsa))) lots of warm thoughts your way…
Sending virtual rays of sunshine. It’s a tough road–hang in there!
Thank you, Becky. 🙂
Hello Elsa, I have followed your daily blogs and well Thank you
I have gone to a Doctor and clinic in Portsmith New Hampshire for 30 years they have cured many a Lupus patient The Institute for the Advancement of Natural Therapies Created by The Late James Dadamo noe Doctor Mendrak is your man I advise you if you have the means and the desire to go a better route to get there. Susan Durga Karen A leo with 5 planets in Leo This Clinic saved me.
Elsa, have you heard of the autoimmune protocol, or the autoimmune diet? It’s not easy, but very straightforward, and could really help.
You might want to look into a Chi Machine. I’m planning on getting one for my husband and my self in the near future possibly for Christmas. It touts that it will balance the bodies systems and circulation. My husband had a stroke on the 5th of September 2013 you can hardly tell unless you know what to look for he was also diagnosed as a diabetic and had high blood pressure. This is what caused him to have the stroke and he is a heavy smoker as well between the diabetes, high blood pressure and the cigarettes a weak spot developed in his brain and a small bleed occurred. However his circulation is not at all good and so it was recommended to get one of these Chi Machines to improve circulation and balance in the body. I don’t know if that would help you or not but I don’t think it would hurt you and might be very helpful these machines are rather costly they run anywhere from $200 to $800.00 according to my research. From the research I have done on these machines I like the Chi Vitalizer Machine. It has varitable speeds YouTube has all kinds of videos on them. Some tout the Original as the best but it is a one speed only machine it appears to be a matter of choice in the end.
Big hugs honey. Keep treating it like a fascinating puzzle. You’re already good at keeping your sense of humor. As a former Lyme sufferer I recommend Team Elsa as an approach. Keep recruiting healers, back up staff and hand-holding friends. Xo
Thanks, Sus. 🙂
Elsa, hope you feel better. I have Lupus as well… but mine is being treated with Plaquenil and Methotrexate… I might take some celebrex every now and then. And I am doing ok. I am a little nervous about this Square coming up… Neptune passing through my 6th house gave me this diagnosis… So Neptune is at the last degree of my health house. I cant wait for Neptune to hit 8 degrees so it will be exact opposite to my ASC. You hang in there, and keep your chin up. I can relate when you say you cant feel your fingers, it happens to me but they gave me some sort of blood pressure medication and it wearing gloves in Colorado’s Winter helps 🙂
I left Colorado in March. I live in the south so the winters will be milder. I am afraid the humidity is going be the problem though. Snow has always been better than cold and rainy. We’ll see!
I appreciate you mentioning the drugs you take. I’m trying to keep perspective. This used to be desperately bad. So unless I really start sliding, I’d like to continue with minimal treatment.
I have some fear of modern health care…that a doctor might just throw meds at a person like me, which leads to complications. I know this depends on the individual doctor so I’m anxious to meet my new doc and just hope it goes well.
I guess what I’m saying is I would rather deal with some symptoms then throw the dice at this point. And I know it could be so, so, so much worse.
I understand the so much much worse… I remember that before the diagnosis I could not even dress up. It was painful. I stopped taking the drugs for about two months, my doctor was not so OK with this, I told her I needed to cleanse, the pain was soooooo bad. Back on my meds I go lol. I had to try! I am anxious (Virgo asc) when she said she might have to give me stronger chemotherapy than methotrexate (not that this is not a nasty one) but I’m just tired of all the meds. I was incredibly healthy when I was a kid. I found about this diagnosis at 35, just turned 37 2 months ago I’m a Leo :). Hugs Elsa… I live reading your posts makes me feel I’m not alone in this situation, let’s cheer each other up!!!!
(((((Elsa))))) <3!
I´m sorry is there som kind of “warm treatment” you can try? Going to Mexico and get a lot of sun?
I wish!!
I wish I had a steam room and should really get a hot tub. My husband doesn’t want to take care of one and either do I. But if this gets bad, it would probably be best. Because once it gets loose, a steaming hot tub is the only way to warm up….and filling a tub three or four times a day does not make sense next to getting in and out of already hot water.
I really want one now. But I’m not up to getting this managed before my son gets here which is the priority at the moment. But I do see them, used for $3-500. I’d just get in, as needed.
I’ve heard good things about infrared saunas. I’m heat intolerant but there are also times when I can’t get warm & have reynaud’s (my body temp stays about 97.5 from what my vitals at Dr visits have been) so it wouldn’t be worth the investment for me. But for you, I would think it would help…there’s also the claustrophobia thing so maybe not….
Raynaud’s syndrome? Blood vessels in your extremities constrict, reducing the amount of toasty warm blood flowing through your hands and feet. In folks with autoimmune disorders it sometimes only takes very brief contact with a cold object, like a glass of ice water, for the body’s defenses to spring into action, or rather, over-reaction. Then the cycle is like a row of dominoes. Once you feel cold because of the reduced blood flow because you touched something cold, your body prepares to protect itself from injury by cold, and reduces blood flow even further to the extremities- preserving body heat for vital organs. Blood flow is directed to our core. Arms and legs are, after all, theoretically expendable. Fingertips turn white, or bluish (blood-deprived) instead of their normal healthy pink color (blood-filled).
When you applied heat to your neck, you warmed your blood, which passes through your neck at a very shallow depth. With the warm blood being so near to your brain, “ol’ brainey boy” throws on the brakes. “Core! We must be warm enough, maybe too warm! Open the gates!” The blood vessels in your extremities relax, allowing warmth to spread into your poor cold hands and feet, arms and legs as the blood flows back in.
Or it may be something entirely different. I am not a doctor. The good news is: you discovered an action that you can take (applying heat to your neck) that worked for you, and brought you some relief!
Sending good vibes your way.
Yes, I have Raynaud’s and what you say makes perfect sense. I cover my feet and hands, frequently. And I’ve used the neck thing before but never noticed this before…the fast relief.
It’s easy to figure this stuff out when it’s been tamed. When I recall what I went through over the last years, chills run up my spine.
(((Elsa)))
Hope you get more info and help soon.
The neck wrap makes sense, as you are ‘warming’ yourself/the blood that passes thru your spinal column (in your neck). If that is the case, what about a sauna? Sitting in the dry heat a few times a day might do wonders towards keeping your feeling thru the winter months. Just an idea, really hope you find relief & answers,
Angie
Love to you, Elsa, big love, praying now.
Thanks. 🙂
Sorry about the Lupus Elsa, I hope things go well with new Doc, and you are able to get things under control ASAP!
Thank you. 🙂
Hugs Elsa! I hope things are better soon and you have a good visit with your son. Where can I get one of the neck wraps? Are they gel filled?
This is the one I have:
http://amzn.to/1OoV4hN
It’s good. Not full of gel.
I have tried heatable booties…horrible, melt, etc. So I think that brands matter….but I’m not sure. I got this as a gift. 🙂
Sorry to hear about your latest lupus experience. Thanks, Jilly for the neck wrap that helps with the pain immediately. What a gift to have her close! (within a truck’s drive in summer at least).
((Lighting a candle for you, Elsa. Prayers to go with, and all the best of good wishes when your son visits, and you visit your new doctor. I relate to how you feel about ‘modern health practices’; in fact I’ll light two candles … one for you, and one for the health care practices. Much aloha!))
Sending love and warm energy from the Mediterranean.
Thank you! 🙂
Sending positive vibes and hoping you like your new doctor and that you are in great spirits when your son arrives! Xx
I’m sorry you are struggling especially with your son coming for a visit. I bought a little collapsible infrared sauna that I use in the winter because I freeze plus it makes my skin really soft.
Sending you healing and warm Waikato sunshine with just a smattering of a soft breeze.
You’ve come such a long way with your Lupus medications. Maybe this new doctor can recommend something other than another pill that would help with cold hands and feet. If he gives you a prescription for some other kind of product, insurance would likely cover it.
Figuring out how to deal with quality of life and Lupus is very Saturn/Neptune. Maybe the combination of the two energies will bring some answers for you in how to deal with coldness in your hands and feet. Maybe Saturn/Neptune will help you solve that mystery.
I’m not a big modern medicine fan either. In many ways they think a pill is the answer to everything. It isn’t. A more holistic approach is sometimes all that’s needed.
I hope you find the answers you’re looking for. You’ve come a very long way and have dealt with all your adversities head on. You have an incredible spirit and that’s admirable.
Hi Elsa, Have you ever heard of colloidal Silver, which is an immune supporter? I’m a big believer of it and works by killing viruses, bacteria and yeasts in your body within 5 minutes after taking it. I buy it from Amazon (American Biotech Labs Silver Biotics Ultimate Immune System Support) for about $20 a bottle and I only take 1 tsp in the morning and 1 at bedtime. My brother introduced it to me a couple of years ago and I KNEW when I took the 1st tsp this product was working. I had had bad ringing in both ears and the first couple of doses knocked out about 85%. I took it for 2 more days and the symptom totally left and I’ve continued taking it since. I’m not blue and I have very good color as this product does not accumulate in your body, but leaves it each day. As a matter of fact, I went to a new church a couple of days ago to their revival service and stayed for the ice cream social. I was talking to a lady who appeared to be in her 70s and she thought I was in my 20s, so I know my color is good and I just turned 57. (I’m not bragging, just passing that along). I used to have chronic yeast infections and many other health problems due to the usual toxicity buildup of smoking and partying as a young person, along with not eating and exercising AND stress, and just never taking care of myself, so this product has been a big turn around for me. I have long stories about the things I’ve tried to fix my health, but I now know that if I had started with this colloidal Silver, I could have saved myself so much money and time and suffering. It may or may not help you, but it’s worth a try and I’ve never known anyone to say it hurt them. You can read the reviews on Amazon and 88% of the folks who tried it said it worked for them, too. I hope you feel better soon. Lots of love, Teresa
The hot tub is a great idea, I was gonna suggest it. Your husband will enjoy it too, once he soaks his weary old soldier bones. They’re easy to maintain, really no problem and especially nice on a snowy night ❤️
Sorry your symptoms have flared up but glad you are managing it.
Yeah, I’d be getting one now if my son wasn’t coming. My husband may not need it as bad as I do, but he loves the tub. I planned to get one as soon as I got here, but then we landed hard…and then it warmed up and I have been incredibly comfortable in the hot humidity. But now with the cold coming in, it’s obvious to me it’s the thing to do. So it’s matter of being able to shop and then have the stamina to go haul the thing or whatever it takes. I just got all this stuff in this house. I know exactly what it entails and just can’t think about it until after my son’s visit. But we’re almost going to have to get one. Because I don’t have to be in there long, but I do have to be in there often. It’s the logical solution and frankly, waiting isn’t going to help.
Right on!
So sorry Elsa. Sure hope things improve quickly.
Thank you for the Amazon link Elsa, it looks like something I need. I especially like it because it can be used hot or cold, and I really like the price ?
(((Elsa)))
Sweet Elsa, How I wish you had moved to Austin. When I moved here the man who sold me my refrigerator said, “Nine months of heaven, three months of hell.” Our weather is dry, dry, dry and warm. I miss the autumn colors of New York, Massachusetts and the northeast but love my winters.
Sadly, I’ve never had an allergy in my life and am allergic to mold, cedar and elm…all here in Austin, still I’ll sneeze happily.
I know you and the Soldier say you have found your forever home but if you change your mind…..well there is Austin.
((((Elsa))))
I hope you have a nice warm Indian Summer there to help you feel better and postpone winter as long as possible!
The sauna would be great, even in addition to a hot tub. You could have it built into a closet indoors, and pop in whenever you need to warm up, with very little maintenance.
I had to zip by the frozen aisle, today at the grocery store. I was going to shop but as soon as I turned into the aisle, I felt a freezing chill. Nice wide aisle too. So this means no ice cream for my son, lol. SORRY!
((Elsa))
praying on an indian summer for you too!! lots of warmth even till November. at least very warm days with the sun shining. I had a dream about this board, or someone (like i couldn’t see past the veil) connected strongly here, and it was a dream of illness, so i was concerned. Then i thought of you, but in the dream the illness/healthness is half half, as if there is health hanging on!! sends prayers!
Hi Elsa,
I am in the northeast now, but for years lived in the south and mostly on the east coast. Visiting my dad in Tennessee at the moment. You might think about getting a dehumidifier (helps) -and maybe a sauna (hot heat). The rains come in the south in NOvember – a lot. Sorry to have to tell you – but winters are usually mild and spring comes in March. Sorry to hear you are under the weather.
Thank you! We have two dehumidifiers running…big ones, emptied daily. Thanks for the heads up re: November. 🙂
not a doctor but calcium channel blockers help with the raynauds part 🙂 i can go into the fridge/freezer mostly now 🙂 verapamil is generic, short acting doesnt create depression, calan is the name brand
I am so very extremely annoyed, that you’re dealing with this, Elsa. Totally pissed off, actually. Ditto for Jilly. This, your troubles, and hers, just so fricking wrong… in my supposed-I guess-probably-maybe humble opinion. ::boiling, nevertheless -wrong, just so so wrong::
Thanks! After seeing the doc, I sprung for the battery-heated gloves. $$$$$
That grocery store frozen section is very common. It is literally the top of the list of what triggers an attack. It’s from the sudden change in temps.
Anyway, the can put me on…something that increases blow flow? Blood thinner? I don’t know. She’s didn’t go into it and I am not interested at this point. I’ll just go back to scarves and gloves..I was wearing warm gloves through all of mass, last year. It’s not the end of the world. And then for relaxing (and chores outside), I’ll wear these heated gloves, heated all the way in the fingers (where needed) and thumb.
Elsa, I have nothing helpful to offer but want to send something nice to you.
https://www.youtube.com/watch?v=fkOZV_HPzuw
Thank you! 🙂