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I have lost so much hair that it is now as thin as Mary’s. She is one of those people with really thin, brittle-ish hair. Fortunately, being that my hair is very wavy from the shoulder down (naturally), Not many people have noticed. It is really hard to look at my hair brush every couple of days and pull out a huge mass of hair. This is gonna sound weird, but it has upset me so much, i have started putting in in a ziploc so I can see how much I have lost…I know I am weird…
I have, er HAD really long, (mid back) really thick hair. I do not use blow dryers or chemicals in my hair and never have, so it has always been very strong and healthy. I used to take 8-10 hours to dry naturally, it would still be wet the morning after my shower. Now it takes 2-3 hours. I can really tell how thin it is, how much I have lost when it is wet and when I brush it. My hair is long and it likes to get tangles at the bottom when I keep it down because of the waves, so I have to brush it 2 or 3 times during the day, usually morning and night at least.
I cried this morning. When I think hair loss, I think chemo, not lupus. I love my hair and have always loved how thick it is. i could never put it in a high ponytail because it was to heavy. The answer now is not that is it is too heavy, it is that it hurts to much, pulls on scalp and my hair too much.
I shouldn’t be so upset, but it is really hard to deal with for me. Of all things, this is the most cruel. I think I am gonna do the one thing I said I never would: Get it cut short. For two reasons: 1.) I think the weight is pulling on my hair, and with it weak, it breaks off really easy, pulls out easier in places. And 2.) This really, really hard for me to deal with, and I think I need to kind of embrace it to help accept it. Some times there are things you feel you just have to do, and I think this is one of those moments.
I think I am gonna donate it all to Locks of Love. I would rather give it to someone who would need it more than I do, and with Lupus, the prognosis for it growing back is alot higher that someone who has ad cancer and been through chemo or radiation. My Grandpa (mom’s dad) Helen and older freind Wade all died from cancer. My other Grandpa (dad’s dad)and Aunt Pat are battling cancer. My good friends Sue and Bree have just been announced in remission from Leukemia and Myeloma Cancer (respectively). Sue has been very supportive of my “mystery illness” always offering support and advice to help cope with it.
This is for them. And selfishly, as cruel as it is, so I can MAKE myself stand up to it and deal with it rather than laying here moping about it..
***sniffle…Whine*** 😥 🙁 😥
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.comHas anyone on here ever had experience with anemia?
I am going to be calling my doctors this week to request some labs (again). Starting about a week and a half ago I started to get out of breath and more fatigued than usual, and in the past three days it turned down. I lose my breath walking to the kitchen, standing or talking a lot now, and get really dizzy, a headache and light headed if I continue to stand. I almost reached the point of passing out today.
I know anemia can be very common with lupus, and I have been pre cautioning since last august when my NP requested I take vitamins b-12 and magnesium and I have a lot of dark leafy greens every other day or so, so iron is a check off that list, so I am pretty sure that it is not a deficiency.
I am not having a hard time breathing but I can feel the strength drain from me as soon as I use my muscles and I start panting really quick, like I am breathing fine, there is no difficulty, but it is like I am not getting enough oxygen, like after a quick sprint, how your muscles need more air.
Panting so much is makeing my chest ache, and it has ached off and on for 3 days now with the panting.. . I also noticed (being that my cat scratches me all the time, the little turd) the other day that my blood is thinner and bright, bright red, sometimes kinda clearer. I bumped a rack at the store yesterday, and it wasn’t a deep scratch at all, like it shouldn’t have even bled, but it was thin and bright and took about 10 min to seal up.
Funny question maybe, and maybe I am not as concerned as I should be. I have been through so much, that at this point I am just like meh, oh well. Laundry2011 mentioned last night when we went to the store that I should look that up or something and that occurred to me. Anemia is one of the main signs they look at when diagnosing lupus, and if I am, than I have checked every single one off the list. My gosh, just let it end. *rolls eyes* It would at least be nice if the headache I have had all day today would just go away..
anyways, any input would be greatly appreciated, and I will be calling the doctors office tomarrow.
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 have anemia. I was diagnosed in High School, and I take iron supplements to help w/ it. Of Course, I have to be careful because there are some preservatives in most supplements that make me sick.
What you are describing is different from my symptoms. I do tire easily sometimes and bruise spectacularly. Keep an eye on it though.
Looking for Blue Fawn Baby Kirin
Sanguine Oriental Test Paints, kinglet
Sun Dragon Koi #3I am so much pain. I couldn’t finish therapy because I was too short of breath, dizzy, had a headache, got weak and almost passed out again. After laying down for an hour, they had my ride come pick me up.
The aching pain from the over past two – three days just exploded and my chest and abdomen are screaming at me, but if I call anyone I’ll just end up at Bonner General again who will just send me home without checking anything telling me I am nuts as usual.
Dear god just please let it stop! It doesn’t want to go away this time and I am afraid to be home by myself..
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.comOK, I talked to some freinds with lupus and this may actuaclly be pleurisy ( ithink that is hiw it is spelled) (osrry for typos lack of air is makin me dizzy) This is common in flares (if that is whats it is) and is inflammation of the sac around the lungs, contricts the lungs and causes pain in the muscles as they haave to work harder. as for the other thing, I may be slightly anemic, would noit surprise me, but I am gonna mtake thier advice an try to snooze for a while. I don’t think I missed any dates fro the fuzzy swap if I have someone PM me…and I am not sure if I’ll be able to do the poly swap til later tjsis summer, just really tired, the running the pyo ang the doing fuzzy swap are enoguhr right now. I guess this could be caused by the sunshine, too. ugh…this is gonna be a really sad summer if it is.
http://www.healthcentral.com/encyclopedia/408/567.html
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.comDid you mention that you had a cat? That or any other furry house critter might be causing the difficulty of breathing maybe? Just a thought as it happened to me early on in my allergies. I knew I was very allergic to cats so couldn’t have a house one, but had a house guinea piggie and I couldn’t walk across the room without having to sit down, out of breath, didn’t act like asthma either, just was out of breath and so tired, so I had no clue what it was, then found out it was Beethoven. Same thing happened when I had a pet rat in the house years later. Just a thought?
…… If the docs are chasing lupus, have they kept an eye on your kidney function? It’s not just bloodwork: they also can monitor the urine for anything that shouldn’t be there, like PROTEIN. If a patient is losing protein in the urine, they’ll lose weight fast. Please have them check a urine analysis at the next visit–it’s really important…..
Backdating some bit, I saw my doc today to update her one referals, how I am doing and the talk about the concerns of pleurisy.
I found out a few things.
1. She really does think I have lupus. She is a great doctor and very thorough. She has been trying to figure stuff out for over a year now as I have come in talking about the minor constant annpyances i have been dealing with. I could have had it for the past 2 years and not had a flair up. Most cases actually start very slowly, so it fits. Unfortuantly she can not diagnosis it. Only a specialist can do that. Hence the rhuematologist.
2. I convinced her to do a urine screening. I updated her about the weight. It is a carful balance right now. I have stopped losing for the most part, and gained it all back, but I’ll out know wher loose 5-8 lbs and then it will slowly come back. She figured after my last labs being normal two months ago, nothing would come up. Well, I got a call back from them and there actually IS protien in it.
Not a whole lot, but it is there, but I am also not loosing weight right now, so to have it there is important. Lupus can be really bad on the kidneys and they need to be watched. Aside of causing rapid weight loss and other things, the problem is what make the kidneys do that. I am not sure how it attacks the kidneys, but I do know if it is not watched, it can very well cause kidney failure.
I am so glad I never stopped looking for answers. Being my own advocate and continuing to look thoguh others said I was just crazy or that it was pointless is finally reaching answers. Though I do not have an official diagnosis, I do believe now that it is the most likely answer. I found out that I have been off and on a bit anemic in my labs over the past 2 years. This means I have every single one of the most common major issues with lupus now. I amm becomig an active member of my SLE supportgroup and I am feeling a mountain lifting off of me every time I get another step closer, and to have my own doctor who has been a great advocate and support for me to keep searching for anwsers when she herself wwas unsure at first is great. She is the best doctor I ever had. She doesn’t just jam a pill bottle in face ad say “take this, call me i two weeks”. She listens. I am really happy to be moving along my path. I am learning the boundries of lupus and also my own. I have to limit my sunshine, I have to stay active though it may hurt, but I also can’t over do it. Even with my art. I have to take things in strides and I have to remember to count my spoons. 🙂
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 amm becomig an active member of my SLE supportgroup and I am feeling a mountain lifting off of me every time I get another step closer, and to have my own doctor who has been a great advocate and support for me to keep searching for anwsers when she herself wwas unsure at first is great. She is the best doctor I ever had. She doesn’t just jam a pill bottle in face ad say “take this, call me i two weeks”. She listens. I am really happy to be moving along my path.
Great to hear this! It’s so important to have a doctor like that. I am sure things will continue to look up for you! Keep up the good work and be strong.
Formerly had the Batman & Joker avatar!
Did you mention that you had a cat? That or any other furry house critter might be causing the difficulty of breathing maybe…….
I have never been allergic to animals. The only time I get the sniffles is on rainy days and when the cotton wood trees and ragweed bloom. And just my cat. She is a “one cat in the house, and it better be her” kinda cat. The only time I ever have a hard time breathing around her is when she flopps over on to face and gives me a mouthful of fur when when wants breakfast earlier and 9 am. Though, I am sure a mouthful of fur would freak anyone out first thing it the morning! :p
My chest now has cleard up for the most part as of sat but starting yesterday, I came down with a really sore throat and nauseated. The nausea could be my grouchy body, but the sore throat could be bug. I just hope I do not get strep. that would stink
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.comMay is Lupus Awareness month! Purple Ribbons and butterflies!
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.comJust got back from the rhuematologist a bit ago. He poked me every where and now I hurt everywhere. A lot. He diagnosed me with Fibromyalgia, (he said that one was really obvious) and Ehlers-Danlos syndrome. He also said that I do not yet meet criteria for Lupus, but it will be continuously looked into.See them again in 3 months. So ya. Ouch. My everything hurts..
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.comJust got back from the rhuematologist a bit ago. He poked me every where and now I hurt everywhere. A lot. He diagnosed me with Fibromyalgia, (he said that one was really obvious) and Ehlers-Danlos syndrome. He also said that I do not yet meet criteria for Lupus, but it will be continuously looked into.See them again in 3 months. So ya. Ouch. My everything hurts..
I was diagnosed with Fibromyalgia recently. Some of your symptoms fit, but there seems to be more going on besides that. I do not know much about the other syndrome, but it is possible that it is contributing to the problems you are having.
It really stinks not having energy, and I can empathize with you on that point. I do have asthma as well, and that makes it difficult to breathe from time to time, and for me it is not allergy related either. The other symptoms you are having are alarming. If you get anxious or scared, it can trigger your vagas nerve (doubt I spelled that correctly) and it can cause you to pass out. I have to practice certain meditations to help calm me down when that happens to me. It took me a year to manage to control it, but sometimes I still can pass out anyway if the anxiety and panic is too bad.
Maybe your medications are thinning out your blood too much also. My blood can look almost fluorescent red on occasion. I would suggest that taking a complete list of all your medications, including supplements/vitamins to your doctor is in order. Discuss it and EVERYTHING that is happening to you, even the little things matter. That way you can try and work out what is going on.I only take lamotrogine, so nope on the blood thinning. I really think I have I have Lupus, but as he said, I don’t meet criteria for a diagnosis yet. He said what nichole said, “your labs tests for lupus are negative, but that does not mean you don’t have it” he said that since I do not meet all off base criteria, it may be awhile befor diagnosis. He has me starting Mobic, it is usually perscribed for rheumatoid arthritis or stuff like that.
Ehlers-Danlos is a genetic mutation in which you body does not properly produce collogen. I had never heard of it, so looked it up when I got home, and that make sense to me. But that affects mostly my joints (that I know of). Basically, that is why I bruise so easily, and why after so many seizures damaging my muscles and joints, they are not healing properly. But that is only a small bit, but I do fit all three main criteria for Hypermobility and Classical gene deformities. Wonder if her will run tests next time..:|
Not a whole lot (actually minuscule compared to lupus and such) is know about it, the are still conducting research and finding new forms of the mutation.
http://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome
http://www.ednf.org/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 have a friend from high school (lives in the DC area) who was diagnosed with ehlers several years ago. It took several years before the doctors could pin down what he had though. He even had genetic testing while they ruled things out. At his lowest point he had to use a cane when he walked. Things are under control for him now and he rarely needs the cane now.
Having a not do great day.. Something popped/cracked in my spine at therapy today and sent extreme nerve paint through my legs so bad I was in tears and barely able to walk for the next 2 hours, ended up on an ice pack for 45 min after that before I could get up to go home. Now the ice numb is wearing of and it is creeping back in the lower spine through my legs. Therapist is really concerned and said if it is still real bad friday to cancel pool and schedule in office so she can address it and figure it out, but my insurances are still fighting with each other and I am about to cancel all my appointments cause nothing has been paid and I can’t afford to go over on my PT/AT. So much pain, but so stuck right now. Not to mention, I also have a sprained finger and an almost healed sprained ankle. I am so stuck right now and in a world of pain even with all the pains meds they got me on. I already feel drugged with the mobic, there is no way I can raise the amitriptylin to max three. (I have the option of taking between 1 – 3 a day, I can only handle 1-1/2 at the most) I am gonna have to buy more icepacks. Even numbed I still feel electric burning at the spot.. and idea or help please?? I just finished the pyo swap peice last night, but I still have two commissions to go and the leopard to work on, I am having a really hard time latly…*whine** **ow..**
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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