Tiredness

I have to agree with a lot of what's being said. I have a "mild" case of lupus compared to my friends and yes, I even have nephritis but you'd never know it looking at me.

One of the things I was told at a lupus support group was that people used to stare down at a of my fellow "lupees" whenever they went shopping or were in the mall, because all these uneducated individuals saw was a great big fat person.

Nope, not true. So a few of these people who have lupus would get right back in their face and say "what are you staring at?"

i have a moonface and the rest of me looks normal. Whenever I see people I don't see all the time (family), they always say "you look great!" which is very good to hear, because I know that they know and remember that yes, I am sick and will always be sick.

There were times when I was still working that my employers would forget about my limitations; I would simply remind them (nicely) and they would be very apologetic.

This will be an ongoing battle for people who just need to be educated.

As for the new doctors who say "i don't think you have lupus" there are two things you can do: stick with the doctor and argue with him/her about your disease or...Change doctors (again if necessary).


As for the mayo clinic, have no answer. I have a friend in ga who went to one in florida though...Sharon, have any response?

I have found that afternoon fatigue is the lingering symptom from a flare (i think i've had four or five flares over the course of the past several years). My work schedule has never allowed me to take afternoon naps, but on weekends, if I can grab an hour in the middle of the day, then I find the afternoon fatigue is significantly diminished.

Dan, how nice to hear a man's point of view on lupus and treatments! I'm glad you had a good gp who knew you needed to see a specialist for specific treatments. Sounds like you hooked right into some solid treatment! Thank god for good doctors who know when to say "i'd feel more comfortable if you'd see someone who specializes in this"!

A friend of mine was told by her gp that he thought she had lupus. She has a positive ra and a slightly elevated crp. (he hadn't checked her ana levels.) he unfortunately works in a clinic where they get penalized for sending patients outside of the clinic for treatment. So instead of sending her to a competent rheumatologist, her gp was going to "read up" on lupus this weekend and figure out what to do. It gave me shivers!

I tried to very carefully explain the little I knew about positive ras and elevated crp and that it's very, very difficult to diagnose lupus unless there's some pretty darn visible signs such as the butterfly rash and even then a doc will take his or her time running tests to make sure. I know there are times when I hate to hear advice from friends who don't really know what i'm going through so I didn't want to say too much to her. She goes back to her gp today. All I can do is pray that she finds a good rheumy if she does in fact have lupus. It's not a fun disease and even more unbearable with improper treatment.

Hey clarebear, I have the same problem. I have a moon face but the rest of my body is normal...Well except for the spare tire around my waist.

I have a great doctor that i've been working with for the last year. I was in terrible shape when I first met him. Kidney activity and the fact of having avascular neucrosis in both my hips. But a year and two new hips later everything seems to be ok. My labs are great and the only thing on my doctor's mind is decreasing my prednisone.

My labs are ok but sometimes I still feel the effects of my sle. I always forget that I have 'limitations' and I end up overworking myself. Well, I won't really notice it unless either my brother or dad points out that i'm overdoing it.

I don't know if other people do the same thing. I know i'm limited but I try not to use my sle as an excuse. I'm a pure workaholic and I won't rest unless I feel a fever coming or my face and hands get cold. Because once I lay my head on my pillow for a 30-min siesta, I end up sleeping for 3 hours. I think my main problem is pretty much myself. I'm stubborn.

One thing I am very keen on is overdoing it. I know my limitations and unfortunately, like you, sometimes I over do it.

Yesterday I was in charleston sc all day with my husband -- we both had md appts; and the day before we were in raleigh, nc for legal reasons. I went to sleep last night at 8:30pm and woke up this morning at...8:30am. It's now 5:50 and i've just woken up from an hour nap.

I am exhausted from the trips. We drove to both cities from here (2 hours to charleston, 3 to raleigh, one way) and I suppose since the car itself is not made for long distances, that also pretty much took energy from me.

Still can't shake the tiredness, will hopefully be better tomorrow and maybe the dog will forgive me for not going on the bike ride I promised him.

I haven't worked full-time since a year ago this month. I pushed myself even then b/c we needed the health insurance and 30 hours was the minimum required for full-time where I worked. Never occured to me to buy health insurance privately. I would be much better off now if I did, but I am sure if we tried to pick up the insurance privately there would have been much red tape as my illness was diagnosed while at that particular job (and they were fantastic about it).

Clarebear

"i'm a pure workaholic and I won't rest unless I feel a fever coming or my face and hands get cold. Because once I lay my head on my pillow for a 30-min siesta, I end up sleeping for 3 hours. I think my main problem is pretty much myself. I'm stubborn."

as long as i've been fighting these disease, you'd think i'd recognize all of the warning signs. Not so. I've got a bunch of stressful things going on right now....One daughter is planning a wedding, another one is moving out of town, and i'm on the verge of losing my job (my boss died recently and the office will most likely be closed by the "kids"). In the middle of all this i'm moving too! None of these things are in my control.

I tried to start packing last week and had good intentions of getting most of the basement packed this weekend. Instead I spent most of the weekend asleep. I had a fever, was sweating like crazy and my hands were ice cold, but I just didn't connect that to the sle. I promise, i'm not always this dense! Anyway, it's nice to be reminded that sleeping most of the day is part of the package and not just being lazy. If I sat down just to rest, I was out for a couple of hours. I'm so glad to know i'm not the only one!

Thanks for all the good information here guys! It's nice to have people to connect with.

Hi, it's mia. I know I haven't been posting for a long time, but I wanted to check in. You said you wanted to check into private insurance, well i'm insured thru the state of texas, the texas health insurance risk pool. It is insurance for people who can't qualify or afford insurance elsewhere. It started out being affordable 8 years ago, however, now it is exorbidently expensive at $391 a month with a $2500 deductible, and total out of pocket annually of $7500! However, if this is the only insurance that will except you with a pre-excisting condition like lupus or mixed connective tissue disease, then I guess this is the insurance that you choose.

I'm not sure all states offer such insurance, but it is something worth looking into if you don't feel you can continue. On the other hand, have you ever thought about working for starbucks? My sister is a college student and works for them, she works 20 to 30 hours a week and qualifies for full insurance benefits. Her insurance is better than mine and it costs her about $45 a month!

Well good luck

mia

Can anyone give me some information on "mixed connective tissue disease"? My doctor has mentioned it several times but the diagnosis changes from one year to another. Most of the time we're stuck with "non-specific connective tissue disorder". Now, I have no idea what that means! The doctor says that because I test positive for so many things, that it would be easy to label it lupus and be done with it. But the symptoms don't always match the test results. Sure makes it hard to explain what's wrong when you.

Any help you could give me on even researching the disease would be helpful. Is it a true medical diagnosis?

Thanks!

I am always tired and yet cannot sleep. Its all the prednisone and chemotherapy. I ache all the time and wonder how I am going to continue...Then a friend was on line and saw this website www.Lisafittipaldi.Com and found this book for me, no it is not a cure except for the soul. I am still tired but feel I can at least relate to someone who is also tired but more than getting by...Read it and you will weep and then want to go out and build a bridge. A brush with darkness.

Pooh on me. I'm worse than you with checking up on the forum!

well, things have gotten significantly worse since I last wrote. My husband lost his job and we've been uninsured now for about a month. No private insurance company will touch me with a ten foot pole: "which lupus do you have? Systemic? Nope, you'll be declined."

even though despite having the lupus I am in "perfect health."

i am telling everyone I know that my vote goes to spongebog square pants because even with his faults I know he'll get the job done.

Anyway, i've dropped three meds and cut the cellcept in half. I am ineligible for both medicaid and ssdi. Cobra is as costly as cellcept -- did you all know that through walgreens 100 pills without insurance is $600.99?

So i've applied for the roche patient assistance program, waiting on results from that.

I am also working now at a law firm admin assitant to paralegal and there are possibly more hours for me. I can work about 32 hours a week, haven't worked 40 in forever. I figure mon tue, off wed, thur fri would be good for resting and such. And, in addition, with the working I can afford the cobra.

Not that I want it, but at this point there is no other hope.

Mia, if you remember the name if that insurer please email me. Amnari s@earthlink.Net.

For those of you who solicit on occasion, please do not solicit me if you are trying to sell me something or tell me about the next cure-all. This means you (please read very first forum topic on the list!!!)

thanks everybody for all the support. I hope I support you as well as you support me!

I'll tell ya, getting and keeping insurance has become a full time job for alot of americans. That conversation could last for years so let's get back to what concerns us. I too am about to lose my job. After 18 years at the same place we're closing the doors (sort of!) and I won't have a job soon. Unfortunately I don't know when "soon" is, so I just sit and wait to see what each day brings. We don't qualify for cobra since we're a small office, and I couldn't afford the $800 and the rx's anyway, so I guess it doesn't matter.

I'm still waiting to go to mayo.....It's been almost 4 months since the doctors here decided I needed emergency attention at mayo, and here I sit. Neither of my doctors can even get anyone to reply to them!! It's just crazy. I hope the mayo trip happens before I lose my insurance! Keep your fingers crossed!!

We don't qualify for cobra since we're a small office

i thought cobra was federally mandated -- it is the law that it is offered to you.

Does the size matter (oops!!! What a question!!!) seriously though, I thought it was federally mandated and therefore must be offered.

Sorry to hear about your troubles...Things here are a little better but not by much. There's an ambulance company chasing me to pay them even though I a. Cannot afford it and b. Filed for bankruptcy so therefore they won't even get the money...

Clarebear

Geesh! Did I really sound that pathetic??? Lol sorry about that.

Cobra is a federal mandate, but it only applies to businesses that have more than 20 full time employees. Surprise!! Like I said, it doesn't matter anyway, I can't afford it.

Clarebear thanks for sharing your financial situation. I had to declare bankruptcy too. Even with insurance, it wasn't coming close to covering the medication costs. So it's either eat or take medicines. My doctors have been great about helping me out with fees and meds whenever they can, but some of the facilities aren't as generous. So, those of us with a chronic disease are faced with alot of pretty poor choices sometimes. I quit feeling guilty about it when I realized there wasn't a darn thing I could do about it. I work as much as I can but it's not enough to pay for everything. So the people I owe can fight over what's left of my assets. It's gotten to the place where you can afford to get sick, you just can't afford to get well!!!

But, i'm still kicking and darn it one of these days we're going to turn a corner on this disease and we're all going to feel better. Stay well folks!!

Have fun!!

I don't know if any of you have checked with your state offices yet but the state of texas offers a risk pool that all insurers in the state of texas must put policies into and a lottery is pulled to see who gets what patient. These are all high risk patients that do not qualify for insurance through any tradional venue and have been turned down through at least two insurance companies or have 1 of 30 listed diseases, lupus is on the list.

You should check with your capital, local representative or state insurance board for information. In texas it is called thirp, texas health insurance risk pool. My premium is $391 a month with a $2,500 deductible, with a total out of pocket a year of $7,500. Even though this sounds like a lot, the presciption plan more than makes up for this, $10 generic, $25 in plan, $40 out of plan. One of my medications lamictal is $860 a month, I pay $25! That's just one of the many so I probably save thousands a month on rx's alone.

It might be worth looking into this program in your state. My other suggestion that I made earlier, my sister is a college student and works part-time for starbucks. She works 20 to 30 hours a week and qualifies for full coverage medical insurance at a cost of 40 to 45 dollars a month!!!!!I told her if I ever have to quit my job to work less hours, i'm going to work for starbucks!

Good luck

mia

Starbucks here I come!!!! That's a great deal on insurance. It would be worth the cut in pay to get good insurance.

We do have state insurance in kansas too. Unfortunately the one I found out about applies only to those on disability. A friend of mine is in that situation and she gets $930 montly disability payments and then she has to pay $860 for her insurance premium. That leaves her $70 a month to live on. Not a great deal huh? She has cancer, and no other options.

I'm still looking for other options though. I keep thinking there has to be something out there that will allow us to have insurance without giving up everything else in our lives. One of these days i'll be old enough for medicare, but until then, the insurance hunt continues!!

It seems many of you don't know and it is too late for you too, but by federal law if you have 30 days from the termination of one insurance to the beginning of a new insurance and they can not ping you for pre-existing. My husband and I got in under this rule when we found out I was pregnant with our first son. Make sure others know this rule, it can be a real life saver when changing jobs or insurances.

Hello..
Im new to this board too..And have lupus..So far doc says not active lupus..Which is good but I still get tired, forget things,have trouble thinking,aches and pains,arthritis and headaches..
But I have found that when I am on a low carb diet eating white meats only... I do better..I have more energy~ and I actually feel better, I have less headaches and if I cut out the sodas my arthritis will stop hurting.. But since christmas I have been off my low carb diet.. Actually I crashed and burned it..Lol
anyway I going to get back on it...I fell on ice on christmas eve and spent christmas eve in emergency room getting cat scan and xrays..Everything normal..But my head still hurts on the top everyday for some reason and where I hit it... And my neck and shoulder.. So not feeling good and bad weather gets me depressed..But yes I got to get back on my diet of low carbs.. Because I do agree... I feel alot better..When I eat right.. But I only eat white meat..With no pork cause im allergic to pork~! And green veggies ...And sugar free items..Low in carbs.. Seems to work for me...
Blue

:) it is great to hear from people with the problem of tiredness. At present I have found it so fustrating with three teenagers it is not easy. Im lucky that they all understand when I have to lie down. I will have to concentrate on my protien to give me a boost of energy any tips would be truly grateful. My gp wants to try me on malaria tablets I have been so carefull to try and keep of medication but at present I feel if it can help then try and give it a go. The winter months seem to be the worst time for my joint pains especially my feet and neck any help on this would be greatly appreciated. All have a good day

liz

Am so frustrated with my doctors. I have been to so many doctors and I am no closer to a diagosis. I've had 2 pheumatoid profiles that have both been positive. My white blood count is very high and I feel like i've got the flu all the time. I have a reoccurring rash on my face, neck, and groin area. They did a biopsy and I am waiting for the results. Why can't they tell me if I have lupus or not? The rheumatologist has mentioned sjogrens disease and behcets syndrome but he can't give me a definite diagnosis of lupus or the other two mentioned diseases. I have constant fever, headaches and not to mention I have had unexplainable and uncontrollable seizures for 3 years now. As you can tell, I am so frustrated and confused. I did have one drug that helped my seizures but it lowered my platelet count so much that I had to be hospitalized for petechiae rash. I was a middle school teacher and had to retire due to my seizures and now I am confined to my home. I just want to feel better. Does anyone have any advise for me? I have not been started on any treatment yet except just topomax for my seizures and pain medication for my aches and pains of migraines and joint pains and of course, I am on antidepressants and anxiety meds and meds for mitral valve prolapse. Any encouraging words out there? My eyesight is terrible. I need to go to an eye doctor because my vision is so blurry. My eyes hurt 24/7 and are so dry. The first doctor that found I had a positive blood test for lupus was my orthopedic doctor. I was going to him due to a torn rotator cuff in my shoulder and ruptured discs in my neck. I had a series of cervical epidural injections to my neck which helped somewhat, but I have been really sick for about a month with something like the flu which started with a rash which the doctor said was the shingles and then went into the flu. I thought I was dying. I am better now but still have low grade fever and aches and pains. Please help. I don't understand why I can't get a diagnosis.