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Lupus Struggles

Discussion in 'Personal Stories' started by Theophaynia, Oct 28, 2017.

  1. Theophaynia

    Theophaynia New Member

    My Lupus Story

    I am 2 months from turning 21 and I've been living with Lupus & Arthritis for 4 years.
    I've only been diagnosed for 2 years but I was suffering the symptoms for 2 years before they figured out what was wrong.
    In that first year I was "diagnosed" with 15 bouts of Influenza and 1 bout of Pneumonia. I spent that first year on bed rest almost the entire year. I was in my final year of school and missed nearly all of it due to being too sick to leave my bed.
    They diagnosed me 1 month before my 19th birthday. 2 years since I started getting sick. I was so relieved to have an answer that I cried. I later realised how terrible a diagnosis it was and cried because I was scared.
    They put me on Plaquenil & Naproxen and messed around with my doses for awhile. 500mg of Naproxen once daily was the best for my joints and muscles but gave me chest pains so we've settled on 200mg twice daily which isn't as effective but it works alright.
    In the 4 years since my symptoms started I have not only developed the normal aches and pains and swollen joints, but I have also developed many allergies. Some even potentially life-threatening. Most of the allergies are things that I know I was never allergic to before my symptoms appeared and they have made life difficult. I've had to completely change the way I eat and the way I do things inside and outside of my own home.

    Among the allergies I've developed are; Tomatoes, Kiwi Fruit, several antibiotics, Morphine, and Latex.
    I wonder if these allergies are a result of the Lupus or the medication I'm on.

    I can't work & I can only study very part-time as in 3 hours a day for 2 days a week and any level of stress above regular no stress causes me to flare up.
    I recently got married and then separated from my husband and have noticed my flare ups have decreased and I think that is stress related.

  2. mark176

    mark176 Active Member


    Tomatoes are from the nightshade family and can make arthritis worse. Egg plant and potato are from same family.

    Plaquenil acts on T helper cells to make them less selective. This switches off part of your immune system, but only a tiny part.

    Your allergies are being caused by immune system being in an overactive state where it is out of balance. You can use antihistamines to control this.

    The antihistamines act on mast cells which are also part of your immune system

    I found that my allergies increased as a result of autoimmune. Currently reducing my western medicine as I have found acupuncture and chinese medicine useful in controlling problems. Will need to wait till summer to see what happens in hay fever season to see how effective it is for allergies
  3. Jessica1

    Jessica1 Moderator

    Hi Theophaynia,
    I'm sorry to hear what you're going through at such a young age. My sister also has Lupus and, like you, has many allergies which cause Anaphylaxis - oranges (and anything that contains orange colouring), antibiotics, bees, all of the Lupus meds so far so I understand what an impact this has on your life. I'm glad that your flares have reduced, you're right that stress can cause them....if you're not getting on top of your symptoms, maybe it's time to let your Rheumatologist know to see if they can get a hold of the flares by tweaking your meds. I had a couple of courses of tapering steroids in the early years which helped to stop the symptoms getting worse while my meds were properly balanced.
    Take care,
  4. Theophaynia

    Theophaynia New Member

    Just an update on my situation.
    I’m finding managing my allergies really hard at the moment and it’s definitely an on-going source of stress.
    I’ve moved in with my new boyfriend and his family and as I can’t cook (the cooking equipment are too heavy for me), they have been cooking for me.
    However, alot of the foods they normally make have in them foods that I’m allergic to so it ends up with either them eating that anyway and I sort of 2 minute noodles or a sandwich for myself, or they struggle to figure out something they can make for me that everyone will eat and then end up not cooking anything for anyone.
    I’m definitely feeling like a bit of a burden on him and his family but I don’t know how to help it. I’ve been thinking about going back to eating garlic even though it’ll trigger a flare, purely because everything they cook has garlic in it.
    Unfortunately there is no way for me to eat tomatoes which is also in pretty much everything they cook as tomatoes make me very ill.
    As a side note I have no troubles with other nightshades (as far as I can tell), I eat potatoes alot, although, thinking about it, potato chips (bagged) do make me sick like tomatoes do, maybe a connection afterall?
    I’m almost finished my part-time study, and plan to do a diploma next year, continuing with this subject. Just to keep me from losing my mind at home.
    I’m attempting some light aquatic exercise but haven’t noticed any changes yet.
    My mental health isn’t super great at the moment, mainly due to my feeling like a burden on my boyfriend and his family. I’m also having some trouble with my own family that isn’t helping me to feel good.
    As such I missed meals the past couple days and missed my meds as well. Definitely regret missing my meds but what can you do in hindsight hey?

    It’s coming up to summer where I am and I’m not looking forward to the heat and the sun - luckily my classes are over so I don’t have to go outside as often. Hopefully can avoid the worst of summer hiding inside away from the heat.

  5. Jessica1

    Jessica1 Moderator

    Hello again Theophaynia, I just wondered if you see a specialist for your allergies? It sounds like something definitely needs to change for you, it's great that you've got support from your boyfriend but in the nicest possible way it could be the wrong sort of support if you're at the stage when you're tempted to eat things that trigger a flare.

    Can you talk to your boyfriend and explain gently how dangerous this is for you? I wonder if educating his family would be beneficial to you. I know this is easier said than done but you really have to be careful and look out for yourself.
  6. Theophaynia

    Theophaynia New Member

    Hi Jessica1, I have been to see an allergy specialist but my allergies all turned up “inconclusive” so they were no help because I “don’t have any allergies”.

    They know how dangerous it could be for me to eat these foods which is why they’ve tried really hard to cook without them. But it’s just so much hassle for them. I cooked dinner last night with my boyfriend for the family and afterwards overheard them talking about how bland the food was without garlic which we couldn’t put in the food because of my allergy.
    I just feel like I could lessen the strain on them by just ignoring the “less serious” of my allergies.
  7. Jessica1

    Jessica1 Moderator

    Are they saying that some are more of an intolerance/sensitivity than allergy?

    This isn't the same thing exactly but one of my daughters is vegetarian so instead of always cooking two different meals I used to be a bit creative and cook dishes that I could make with the same basic ingredients but substitute the meat in her food with veggie alternative. Could that be an option, to make a smaller portion alongside theirs but without the ingredients that make you ill for yours?
  8. Theophaynia

    Theophaynia New Member

    No, they’re just saying I don’t have any allergies -.- but I know I do because I’ve witnessed them.

    Some meals they will do that but it’s alot of extra effort that they tend to not have the energy to do. Hence why they end up either just cooking for themselves, cooking boring food, or not cooking at all.

    I just feel like such a burden on them for something I can’t control.
    I’m not sure what I can do to make it less of a burden on them.
  9. Jessica1

    Jessica1 Moderator

    It's such a shame that you feel that way but I'm sure there's a lot of (misplaced) guilt in us all one way or another for having this condition that, like you say, we can't help. Perhaps a bit of planning with your boyfriend might enable you two to cook your meals after they've cooked theirs? It's tricky when there are more than one group of people living together but it's doable...we did a similar thing before my daughter, son in law and grandson moved out. They spent a year here being self contained and catering for themselves. It's cosy and takes some getting used to but it worked somehow!!
  10. Theophaynia

    Theophaynia New Member

    Hey guys.
    Long time no see hey.
    It's been a crazy year for me (has it really been a year since I messaged?)
    Since my last post I have had;
    A suspected stroke in January.
    A large ovarian cyst removed in February.
    I got dumped by my oh so supportive boyfriend in March (though to be fair I had been thinking of breaking up with him since February).
    I found a much better partner who I have since moved out with (it's just the 2 of us and my support cat.)
    I had another Ovarian Cyst surgery in April. This was after a significant bout of about 10 large cysts coming and going.
    I had a serious concussion in May, resulting in me going to the hospital and having post concussion syndrome for 2 months as well as whiplash.
    The post concussion syndrome had me so emotional and unable to think that I was coming to the conclusion I was losing my mind.
    In June I had more testing for Ovarian Cysts and found I was finally cleared of them.
    In July my partner and I moved into our current house with my cat, just the 2 of us, and it's working amazingly well. We're both happy eating only the foods I'm capable of eating and he's really helping my mental symptoms which of course then helps the physical.
    In September I finally recieved my custom order, human hair wig and my partner found a bald spot on my head (good timing right?)
    Also in September I had more testing for more Ovarian Cysts, found more and it was determined that I have PCOS.
    I was started on Metformin and told to lose 20kgs. So far..I think I've lost 2kgs and then gained 5kg The Metformin lowers my blood sugars and I've been finding that my blood sugar was already low cause the minimal dose I'm on (1/4 a tablet once a day instead of 1 tablet twice a day) is making my really dizzy and nauseous if I haven't eaten alot, or eaten things high in sugar.
    October was okay health wise but my partner lost his job so we're possibly looking at being evicted in the next few weeks unless our realestate agent is nice to us (we've just spent all our savings to pay this weeks rent).
    November has been good. We started going to the gym we got a membership for back in September, we had some friends come to visit from overseas. We have my birthday party coming up this week. My partner's business is getting all the final stages of launching.
    It's been an alright month so far.

    I'm getting tired of limitations though, we went to the zoo a couple days ago and I had to hire a wheelchair so we could spend the whole day. It was fun, and better not having to worry about when I would be too tired to continue but it felt so demeaning when I can still walk, to be in the chair. I know one day I'll be in the chair full time but while I can still walk I'd like to you know?

    I'm tired all the time, I get on average 3 or 4 hours sleep a night but I'm still functioning (a fact that boggles my partner's mind).
    I'm still coming to terms with the fact that despite the small chance I personally had of having kids with Lupus, I atleast had a chance. But now, with PCOS, that chance has decreased to an even lower chance.
    I started looking into getting my eggs frozen and all that so maybe we could try suragacy at a later date, but I was turned away because fertility treament facilities generally wont treat you unless you've been trying and failing to conceive for a year. My partner has said he will be willing to try and start a family with me once we're more financially stable, which logically makes sense, but I also feel like we have enough of a support system to start trying now because I don't know how long I have until my body doesn't obey me anymore. I am already having alot of trouble with my hands doing what I tell them to, I think due to the stroke. And my brain to mouth connection seems to be wired up wrong now.
    I know in myself that if I can't actually take care of my baby personally, like if I have to rely on my partner or a support person to take care of my baby, then I would rather not have one at all.
    I understand his concerns though because we're both young and we're the opposite of financially secure so I'll just have to wait.

    In other news, I found more allergies, I'm now allergice to strawberries and a couple more medications.

    I think that's it for my update, maybe this time I'll stick around instead of leaving it a year again

  11. Jessica1

    Jessica1 Moderator

    Welcome back, Theophaynia,
    What a year you've had! I'm sorry that you've been diagnosed with PCOS..what a blow on top of everything else you're dealing with. It sounds like you're having a good rational think about your situation and recognising limitations even if you don't like them. It's so very hard when your head wants to do what your body can't isn't it?

    I'm really happy for you that you've found a wonderful partner, it sounds like he's a keeper!

    I hope you do stick around now you're back as you'll find lots of emotional support and a good place to vent if you need to. I'm sure your experiences will help a lot of the members too.
    Take care,
  12. Theophaynia

    Theophaynia New Member

    I'm so tired of being sick all the time, of always having something wrong with me.
    Over the past couple weeks I've been having some strange symptoms, basically pregnancy symptoms, but without the baby. Today I had an ultrasound done - found a new, large ovarian cyst. It's about 6cmx4cmx4cm and I just cried. I'm so tired of this. I wanted a Christmas miracle, not a Christmas misery.
    I want kids so much, but I know that everytime I have another cyst, is another scar on my singular ovary, it's another cycle that I was infertile. It's really doing my head in.
    I'm waiting for my doctor to tell me if I should go to the hospital (I'm hesitating to go because I don't want to spend Christmas in hospital).
    If I do go, I'm so close to telling them to just take the ovary with the cyst when they remove it. It's not like it's doing me any good right now anyway.

    Sorry for the rant, I didn't have anywhere else to turn to, not really.

    I hope everyone has a lovely Christmas(holiday/whatever you celebrate).
  13. Jessica1

    Jessica1 Moderator

    I do feel for you, Theophaynia. What you're going through is so difficult but the thought of being admitted to hospital at Christmas on top of that I'm sure makes it more difficult to bear.

    You mention that you don't really have anyone to talk to and that's a shame, you can always come here as much as you'd like and we'll try to support you. Are there any local support groups where you could get to know people in similar situations?

    I hope that you don't end up being in hospital for Christmas but I'd urge you to put your health first age try not to avoid going if you need to.

    Sending virtual hugs to you,

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