My story

[McVey]

Hi I'm Gina 39 yrs old I feel like I'm in a body of a 86yr old and sometimes I feel like it's my last hour. I stopped going to Dr. Five years ago I would get severely depressed and anger sitting around all elderly and I was 26. My Lupus has been strange I get a new symptom every year my very first symptom was effect from sun then my legs weaken then body then my eyes I pick sleep out of my eyes for hours at a time I feel like I have a semi on my lids my nerve damage us so bad I will beg at times to cut of limb so you can relieve pressure. My mother could walk to Texas and back I never could. I have 3 kids that has lived daily around my Lupus. I can't work and provide I'll never be a woman that is powerful to wear she works and provides for her children mine go without Christmas and birthdays I can't afford it. They get so angry and yell. I don't understand why God allowed me to care for 3 kids in this old body of mine. I can't walk stairs anymore. I've been vomiting almost everyday for 2 years my gut is so nauseous most of time I make myself vomit to release pressure also. The back of my left side has been numb for months even around my mouth area. Past 8 months my memory has been extremely bad it was always very forgetful, not like this I slur my words I'm like on a 10 sec delay like my brain is almost childlike at times. My kids hate it also make fun me. I anger clerks at stores. I forget what I'm doing. They see a young woman. They all think im nuts or probably on drugs. I've been tired I mean tired I don't believe my kidneys are harmed I pee fine I have severe back pain but probably my back. Please don't judge me on my medicine I'm just tired of being tired at my age. I wonder if I'm going to be here a year from now or month hell maybe lifetime but how so if my body is enduring this much damage . Lupus took away my woman hood I never got the chance to be a good mom . Only thing I got was a mean hateful disease that affects me so bad one day I feel like I'm dying and a day or two later I'm grocery shopping ( granny style) lol anyways just kinda wanted to know what you think I am with lupus am I close I sure thought been long time ago thanks so much for allowing me to vent

[whisperit]

Hello Gina,

No need to apologise for venting. We all need to do it from time to time.

I'm not quite clear about your medical situation - have you had a definite diagnosis of lupus/SLE or some other systemic auto-immune condition like Connective Tissue Disease or Sjogren's? Are you currently taking any medication? Is there some specific problem you think the forum might be able to help with? x

[McVey in reply to whisperit]

Yes I was diagnosed when I was 26 years old with Lupus also fibromyalgia and RA of course I stopped seeing my doctor 5 years ago well I never felt different and new spells would come on or off the meds so I stopped in to tired to even wanna go anymore

[whisperit in reply to McVey]

Thanks. Many of us could identify with those feelings of despair when we are faced with doctors who fail to listen, endless waiting lists, vague and ever-changing diagnoses and treatment, and the way these diseases seem to keep coming back regardless. So you've not seen any medics or had any treatment for the last 5 years? Since your diagnoses are serious, long term conditions, it is not surprising that without treatment you are feeling so unwell. Is that because you want to follow a different course of your own design for treatment/recovery? Or is it less deliberate than that? x

[LakeDweller in reply to McVey]

I do feel for you. You didn't birth children to only have no energy to to participate in life with them. It can be very frustrating.

I am not a doctor. Just someone who's family doctor found and researched a company's main product. It is named Ambrotose. Or rather Advanced Ambrotose complex powder. I buy mine in 120 g container. Encapsulate with the help of my brother and father. I was diagnosed at 17 after years with breathing and arthritis symptoms. In 1997 I switched because I was going to have try a new medication and have it made in California. I never did. It has been Mannatech that has gotten me here with the exception of sunscreen, staying out of the sun. Trying not to be under in indoor lights as well. Especially the type in tube. The only serious flares have came when I tried to get married and to save money for a dress and airline tickets I went without so I have no one to blame but myself. I don't smoke, rarely drink at all and when I do it is a small glass of "wine" that is 6% alcohol with 0% fruit so just what is BlackBerry Marlot from Arbor Mist? Anyways I digress.

Since you have made the decision to abstain from pharmaceutical intervention it is the perfect time to take the chance to become your own lab rat. We all have been but taking this there is no dangerous side effects from what is Freeze Dried Aloe Vera. If you are still menstrual or having hot flashes I would add wild yam from the same company. Their name for it is Plus. It will help strengthenyour bones without upping the breast cancer scare the other hormone treatments do.

Don't give up. Fight with a new set of tools. I see Osteopathic docks that have spent their lives trying to help without relying heavily on the pharmaceutical industry. Only recently we have been told how dangerous it is to overuse antibiotics. It is in our meats and dairy products.

The only children that I dared to have are furry babies. Since Systemic Lupus is genetic and at 17 my mother was told that I probably wouldn't live to see 30. I never tried. Took the warnings very seriously. That it only make me worse and would possibly die or pass it on. So this is life. Not the one that I dreamed of. It would have been wonderful to adopt and sidestep my genetic time bomb. I often feel cheated out of the life I had planned. Instead I became a care giver to the elderly and those worse off. Grandparents and parents. A brother with dyslexia. So I have done my best. Hoping that they would get better and then it would be my turn to live life out load. Now I pudder in the garden on overcast days under a large sun hat with long sleeves and pants. Unless it is hot and then I splurge on sunscreen. At 47 I feel frustrated

but lucky that I am doing better on less. Coming off of seizure meds and switched to cbd oil from CW from the Stanley Brothers in Colorado. I have decided to go back to one of my docs if I need to be managed. At $100 for an office visit. I think it is a good investment.

I wish you well. It takes a village with lupus cebritus. The Neurological issues are scary for sure. But I have learned a lot in a short lifetime. No sense in quitting when I am just now getting the hang of it. I am here for any questions. I may not have all the answers but I will admit when I am stumpd. That is when you call reinforcements not give up. Show up for the people who show up for you in life. Otherwise it is a waste of your reserves. We only have so much energy. One of the worst things to happen is to feel like it is not appreciated.

[LakeDweller in reply to LakeDweller]

Oh and just to let everyone know that I went from positive to negative when I restarted my Ambrotose. It might be $132.99 a month. But it is worth it to have my life to live.

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I think we all know that feeling xxxxx

[Annethlowen]

Feel for you Gina speak to your children explain your love for them and how you suffer so much from your illness. Help them to see you would love to be the best mum in the world but you don't have the energy.

[Paul_Howard Partner LUPUS UK]

Hi McVey ,

I'm sorry to hear that you are feeling so unwell and that your mood is currently very low. I would urge you not to give up though. With the right medical team supporting you and suitable treatment you could get much better control of your symptoms and significantly improve your quality of life. Things can get better and I'm sure that many other members of this community would attest to that.

What medications did you try whilst you were seeing your doctors?

If you would like recommendations about lupus specialist doctors in your area, please let me know whereabouts you live and I would be happy to give you information about any we know nearby.

I'd also encourage you to talk with someone about your low mood. Perhaps take a look at getting a referral to a local counselling service? You can find more information and advice about available support services in our article here - lupusuk.org.uk/coping-with-...