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You’re way out in the Idaho pan-handle right? Has anyone thought to test for advanced stage Lyme Disease? Folks out west tend to think of it as an east coast disease; I (lucky me) caught it in the Sierra-Nevada nearly 30 years ago – one of the first documented cases in California. It developed to stage four before they treated it and I still have some neuralogical impairment from it. A lot of the symptoms you’ve mentioned sound like mine. Couldn’t hurt to be tested. Good luck!
tdm :~
tdm
Ya I think so, though I didn’t grow up here, I grew up in the east. I’ll double check with my Doctor just to be sure though. She checked for a lot of stuff in my labs last August.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comAnd get her to check and recheck, just in case.
Read my books! Volume 1 and 2 of A Dragon Medley are available now.
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I host the feedback lists, which are maintained by drag0nfeathers.
http://www.sarahjestin.com/feedbacklists.htmAnd get her to check and recheck, just in case.
Lyme is a tricky little thing to find after about four weeks from onset. So yes, check and recheck and check again. It fools the body into thinking it’s not there and can literally hide from your immune system. Sometimes you’ll find traces in spinal fluid most times you won’t. Insist that you’re doctor do everything possible to rule it out or find it. Just to be safe, I’d have your doc treat you for it on the off chance that it’s there but hiding.
tdm
tdm
Throwing another thought out there: have you ever been to the desert? Anyplace that creosote bush grows? California–and other parts of the country–has Valley Fever (coccidioidomycosis) which is a fungal disease that normally attacks the lungs, but I’ve seen it go after the nervous system too. There are other fungal diseases too that can turn up where they’re not expected. The Midwest has some that aren’t found out here, which means that the docs don’t always think to look for them. Blood titers can be run to check for pretty much all of these.
I’m so glad to hear that things are better now than they were! The back half of 2013 was not a nice time for you. Thank heavens for good people like Mary and Mike!
I’ve have only been to Washington, Idaho and Montana. Aside of that my traveling only includes driving from Michigan to Florida every other year or so the visit family.
I will be asking about labs, and such, thanks for the stuff, I am adding them to my list to ask about what she might know. Again just getting opinions and most things would come up in labs, but my periodic labs have always been perfect, only one having a slight Vit D deficiency in the winter of 2012-2013.Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comToday, I was given this link.
I have never read something that explains what I am going through until I had read this. People, friends, coworkers, family. They are always asking me how I am feeling that day, and my answer is usally the same or pretty similar. “Tired, just tired, but OK.” With “…somedays are better than others…” occasionally added on some of the worse days.
I have never been able to explain what it is like to suddenly have your life, your joy, your freedom to do anything you ever wanted, suddenly ripped away in so short a time…… and to not have it come back. It isn’t like falling and scratching your elbow, you don’t just get a bruise that heals in a week. It stays, and it stays for a long time.
I have been counting my spoons and testing how many I have had for three months now, as they got less and less. I am finally now learning when I have reached the end of my spoons. that is why, somedays, I can build fantastic snow sculptures, and others I can not even sit in a chair to paint. I am always tired, and have been for a long time.
But that’s why even though it is hard, I can remain happy. Because, when you have to decide what you spend your spoons on, you learn the value of what you have, and learn what is truly worth doing. This article is smack copy of the way my life had flipped. I may not have lupus, but this is what I feel everyday. The weakness, the tiredness, the aches, the random excruciating pain that leaves me in tears and has put me in shock, the seizures, the bruising, the stress, the fevers, the chills, the mental fog. It has become my life, and now runs it. But I don’t have to fight, I stopped fighting after the ICU.
I decided that this is just another test, this is how I have to live now, even if it is temporary. This cloud over me…There is a different way to fight it. Not all wars are won by fighting. Sometimes, you just have to wait. Wait for that right time, and until then, you persevere. You learn what is important, and what can wait. You learn who are friends, and who are not. You learn who you truly want to be, what you truly want to do, and you learn, that anything can be done, but sometimes, you just have to find another way to do just that.
Thankyou to those who are following, this is the best way I have to explain what each day has become, and part of how I remain joyful, and keeping trying. I haven’t given up. I have just found a different way to win. And sometimes you have to give to receive. I give my art, my time, my spoons to the world. And return I am given the chance to learn and to grow.
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comYes, you just do what you can on any given day. One of my sisters has chronic fatigue and she says the hardest thing she had to learn is to stop and rest as needed when she runs out of energy.
Have you been tested at all for adrenal fatique too? It gets worse with stress. I posted some links on another thread on here too as getting your adrenals in shape can help with chronic fatique and other symptoms as well. I will message you with the info if you like.
Looking for rainbow or pink & teal grab bags!
wouldn’t that be shown it the labs? my labs in the past have always been normal, but she’ll probably do some more
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comwouldn’t that be shown it the labs? my labs in the past have always been normal, but she’ll probably do some more
another update. it is probably pointless, but I’d rather share my concerns then sit here and wonder all day.
I am now awaiting another set of even more extensive labs to check (again) for lupus or lyme, also awaiting another MRI, and yet again, still more research..And still no logical and proven answer.. just that I have epilepsy, and that my seizures are NOT epileptic..
and we finally managed to put together a list of the symptoms I have been complaining abotu since the seizures got worse in november.
* low grade fevers
* headaches, almost constant, varies day to day
* vision in one eye will become fuzzy, sensitive to light (happens in both side, periodically)
* always pale or flush red, varies day to day
* varying surface temp of my skin – I mean that despite my body temperature, the skin will heat up, when this happens, my face and sometimes other areas will become red and hot to touch, making it seem like I have a fever. I will sometimes feel like my face, hands, arms, neck etc are near something very, very warm/hot.
* one or two fingers in a hand will suddenly go numb or tingling, sometimes both, and get very cold.
* very exhausted/ tired, varies in degree day to day
* I am usually weak, but varies day to days (seizure related most likely)
* Cold sweats/night sweat – I may be sweating profusely, although I am freezing or fine. I will wake up at night, just drenched in sweat
* sensitivity to hot and cold, never had a problem before new as of oct/nov . I ride a bike and am used to temp extremes (-20 up to 105* F)
*dizzy spells (probably seizure related)
* occasional balance off to the left or right. ( seizure related???)
* unregulated temperature – one moment it may be 65* and i am sweating and really hot, but other times it could be 75* in my house and I am freezing, but as soon as it hit 76* I’ll be roasting again
* Really poor sleep, like 2 hours and then up all night, or only for 10-15 min at a time the rest of the night. I think I am having all my seizures at night now. I often pass out when I have awaken, and next thing I know I am covered in sweat, really dizzy, and now physically exhausted..
* pain, not the muscle kind. SHARP STABBING pain in my abdomen, totally random, and excurciating, puts my on the floor curled up in tears.* not really a symptom, but I have started sleepwalking. I have a space heater I use at night, but apparently if I get hot, I will get up and turn the heater and my radio off and go back to bed. I find this kinda amusing because that is all I do. I don’t really wander around or anything..:P
Not that my list is helping anyone, but these among a few others I can not remember from our list (my memory stinks right now, not sure if it is from the seizures or not..), people keep telling me lupus, lyme, fibromyalgia etc, but I still do not really have an answer.
If I am not at therapy or painting, I am usually sleeping.
I am now doing aquatic therapy exercise three days a week, strain counterstrain therapy two to three time a week, some type of therapy with electrodes on my back (not tens unit) that is supposed to help my muscles relax and promote aTP production/use on a cellular level etc, 1 -2 days a week, and CBT therapy 1 day a week.
I may have a referral soon for bio and neurofeedback and brain mapping..this I’ll be finding out later today..
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comIf your doctors are testing for advanced stage lyme, you might be interested in this article written by a Dr. who has had advanced stage lyme himself.
http://lymedisease.org/news/lyme_disease_views/220.html
It talks about the disease’s ability to disguise itself and hide from the body’s immune defenses. Very useful info and also helps point you to local Dr.s who treat advances stage lyme. Good luck…
tdm
tdm
It scares me to read these article because all of the issues I have can be text book desribed as lupus, lyme and one other, even the siezures. those are the problems I have, but both are incredibly hard to diagnose. I suppose I just need to pray for some lab results, and if not that, something on the MRI..
I just want the pain to go away.I am always in pain, and always feel sick, and am so weak. I wanto to be able to ride my bike again..I miss that the most. That was how I have managed my stress and bipolar. with out my bike and the outside world, I feel like I am missing a piece of me…
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.comI’m so sorry mi chica. I didn’t want to alarm you, I just want you to be educated in the difficulties that diagnosing advanced stage Lyme can have and cause. I know about it first hand as I was one of the first to be diagnosed in California in the early 80’s and all my blood work came back as negative except for the last test they did. Mine was the case that proved you could be infected but show a false negative until months down the road. There are many good sites about Lyme on the net – several whose members include folk like Ben Stiller who is still fighting his illness… Just make sure you ask your doc lots questions and bring your research with you. A lot of people in the medical profession scoff at the idea of Lyme as a very long term illness.
tdm
tdm
i just want the excruiciating pain spasms to stop. i shouldn’t be shaking in tears and so much pain. why won’t it stop. it hurts so much always the same spot in my back and gut..hurts so bad..
Recently married to the ever lovable BiPolarBear (little John)
www.weaselsoneasels.com | www.facebook.com/weaselsoneaselsAs seen on This is Life with Lisa Ling on CNN (2018) !
Always open for pyo commissions, repairs and fine artwork! Email me for current prices! awier(@)weaselsoneasels.com
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