Well, I had a breakdown! Ugh! Trying to be strong by myself with no support from family. My husband deals with it by running away and spending time with his friends every weekend. Which, he probably should. I have no life. I just cut all my hair off because I have been trying to stay strong all this time, and even though I tried ginger shampoo for several months, my pink itchy scalp got the better of me. Now, I want to cry.

I think I cut it all off because I just want people to realize I am not ok. That things in the inside scare me, and I am tired of doing it alone. I told my husband last night that I am afraid of dying, and particularly when I can't catch my breath and have to work hard at catching my breath. This isn't one day. The breathing has been going on for awhile. And all I get from drs when I say this.... is a breathing test. No one noticed that my CO2 was a little high end in my blood work but me. If its not in the range, you're fine. Come back in 3 months. I have been getting a lot of heart palpitations, looking like a ghost- so I take an iron pill.

I have gone to doctors for the past two years. They all say I am fine through bloodwork findings. I have been sacrificing my entire life for everyone around me by not doing things I want to do, and I am tired of it.

I am just plain tired of trying to be the strong one all the time!

Thanks for listening....

25 Replies

  • Hi Natura, so sad to read your post. Think I sometimes feel the same myself. What can I say that doesn't sound condescending. Chin up my friend you can get through this. Go visit your Ruhmy if he or she is sympathetic. Show them your post. You are obviously screaming out for help and so you should cause this condition it so nasty. You aren't alone we are here to listen. I've seen posts you have written in the past you are a caring knowledgable lady who can put your feelings into words. Give yourself some of the advice you would give others. I'm certain there are lots of fellow Lupies who feel something the same but couldn't put it into words.

    You are in my thoughts, I will be watching here to see how you improve.

    Much love x

  • Hi Natura, you have taken the first step to dealing with this by coming on here and having a good honest vent! Good on you, now you need to start putting your needs first and let other people's needs take a back seat. Go do whatever helps YOU feel good and don't expect so much from yourself baby steps forward is all that is needed good luck 😊

  • I wasn't sure I should go to a knitting group I had been to because my coordination was way off and my knitting looked just plain bad. I didn't get there much but every now and then. The ladies have become a support group. I get there more often now.

    I told a lady (80 years old) this past Sunday I was redoing my house to make it more handicapped accessible. She said her first thought was who was handicapped but then she remembered I lost 4 inches over the past 7 or 8 years. Also my reach has become more limited. I did without a car since June of 2014 and just bought a 16 year old used one. This one is an automatic. I have driven sticks since my 20s. This Sunday, I drove us to church for the first time. She had been driving me since the fall. I had walked to a more local church during the summer. She wasn't giving up her Sunday School and suggested I join the other class. People may get annoyed with me, but I enjoy running my mouth in the class and sometimes feel it is more spiritual than church.

    I understand about the hair. I have felt really ugly as lupus first came as discoid. I lost patches of hair in my 20s and 30s. My scalp itched and felt HOT. The thing that bothered me was the cream made my hair ugly and greasy. I have never cut off all my hair but a former colleague used that as her hair style. She wears colorful earrings and it looks cute. Our current first lady Michele Obama recently made that her look and has received a lot of press, positive and negative.

    Family doesn't know what to do because what's bothering us changes. With so much of the illness being inside, it is easy to become scared and worry about dying. I wonder if there is one small thing you and your H could do together. I wish you the best, Natura.

  • Reading your post made me so sad Natura. You and I have chatted before and I always look out for you. You always give such helpful, caring and understanding advice. I wish I could give you a hug and have a chat. Cutting your hair off was a huge cry for help. You wanted to show everyone that all is not well, by showing the sores on your head Please don't feel alone. You must reach out to people now. Can you talk honestly openly with your husband and children now? What was their reaction to your hair? If not them, a friend or a local group. I think the posts above are all right and good advice. You need to focus on yourself for a while. And get to your doctor ASAP. I hope you are feeling better very soon. x

  • Hi Natura

    So sorry to read your post and what your going thru!. My American penfriend cut all her hair off as she was losing clumps of it, I thought how brave she was , she has Lupus, it's such a cruel disease!.

    You need to change Consultants, you could get a diagnosis this way and treatment. You've been struggling to self- treat for a long time and need help and understanding. Lots of TLC for yourself and you will feel stronger. Take CareX

  • Hi Natura, it's horrible when we don't feel well and no one understands. Did anyone comment when you cut your hair? If not this probably made you feel worse, the problem with lupus sle is we dont 'look ill'. Sometimes people prefer to ignore how we feel as they don't know what to do themselves.

    What medication are you taking, does it need adjusting? I've never thought about CO2 in my bloods, I've always gone by my oxygen levels is this the same? Even when it's hard to breathe my levels are always at the lower ok end.

    Palpitations are horrible feeling but again am told all ok, doesn't help does it? When you are the one physically feeling it.

    Have you read the spoon theory, this has helped me to explain how it makes us feel.

    Keep posting as we all understand, know and care. I hope you begin to feel better soon.

    Sending you a cyber hug xx

  • Would love to learn what the spoon theory is. I could use some assistance to convey to others what goes on inside. I usually think of it as part of my body attacking another part (cell) of my body. I have had the thought it should just be terminal instead of a roller coaster. I leave that thought alone most of the time. There is usually something else I can find to focus on.

  • I came across this by chance and have used it a few times now, it's an easy way to explain how we feel when having to face daily life. this seems to have grown since when I first saw daughter used it to explain to her husband how her day is, it worked, now he helps with all the daily chores and the children. I guess you don't have to use spoons, anything similar would work but it gets the point across in an easy way for people to understand when you look the picture of health!

    Hope it helps. X

  • Thanks, will definitely look into it. I wonder if it would fly, if I use it to explain to LTD what's going on. Their reason for approving LTD is offensive and insulting.

  • Hi Natura, I've always read your posts and Comments and found them to be so supportive. I'm sorry you are having such a hard time. I wanted to ask if you have had any treatment for depression or had any councelling? You sound so very depressed.

  • Why cut your lovely hair, there are many other ways to show you're not well - such as sit down on the sofa and ask to be given a glass of water because you're in pain, or stop doing the cleaning for few days and when someone comments on it say that you're out of breath - and many more like it.

    No one will believe you if you continue to move around and do stuff for everyone else. Maybe exaggerate a little but there's no faster way of convincing hubbies that we are ill than not cooking, or cleaning, or ironing that white shirt for them to go to work with.

    As for the doctors - this thing is so obscure that most doctors have no clue, you probably know more about it then them. The trick is to find one who listens to you and is willing to work with you to make you better. Not easy, I know.

  • Hi Natura. Like others have said, I enjoy read your posts. But not this one - it's so sad to hear you sounding down, and, first and foremost, I send you a big virtual hug (all the way from rain, sleet and wind-lashed Scotland).

    I took the liberty of looking at your Forum profile and past posts. It struck me that you just haven't got to the bottom of things and I was wondering if your health insurance would allow you to see another rheumatologist, as your current one doesn't appear to be doing much for you. Particularly if you are feeling the way you are.

    For years my own bloods were 'fine', with the exception of a consistently low level of lymphocytes. Then I found that I had a raised ANA, which was put down my doctors to being 'run-down', although I was told that I 'looked well'. And so on and so forth. I felt increasingly unwell and like giving up. However I finally got to a great rheumatologist, was diagnosed, and am now treated for Lupus and Hughes Syndrome. Plus other doctors take more care when assessing me. There are still days/periods when I seriously think 'to heck with it all', but it's a lot easier to manage with supportive doctors.

    My very best wishes to you, and I hope you will let the Forum know how things go.

  • Hi Natura - I am not going to state the obvious about how you must be feeling at the minute - but one thing you have to remember is that you do not need anyone's validation for anything. Seems that you have been a people pleaser, always wanting to make people feel better & you would have sacrificed anything to achieve this, but when you needed someone to do this for you, there was no-one. We tend to judge people on our own standards and when they are high, people don't, can't or won't reach them. Might I suggest that you speak to someone about cognitive therapy as you need to reach outwards instead of retreating inwards and need to be more in control of your thought process. Lupus is so unique to everyone, each as unique as a snowflake and what works for some of us may not work for others but talking is a good place to start and you have been very wise to share how you feel with us and no-one thinks any less of you for doing so. We sympathise & more importantly empathise because each us here as at one point felt as you do now and perhaps many still do. Reach out and ask for that help - even demand it if needs be, but it's time for you to stand up for yourself as you have done for other people. Gentle lupie hugs xxx

  • Oh Natura, you must truly be at the end of your tether, and like everyone else, I really feel for you. From your previous posts it's obvious you're a real fighter, and it may be that your insistence on doing as much as you can is blinding others to the nature and extent of this wretched disease. I'm going to agree with some of our fellow lupies here and say first of all, I think you could do with some counselling - even if it's just a place to blow off steam, it can be really helpful. I am also thinking it's time to change your medics. When it's glaringly obvious something's wrong and nothing's being done, you're not being properly treated: it really is as simple as that. I know that you prefer to use natural methods where you can, but it sounds like you need better intervention, including some sort of treatment for depression (which can be as non-invasive as counselling). You say your husband spends weekends with his friends, but you don't say how supportive (or not) he is and I wonder how much of that is because you've been putting a brace face on things? Again, it's always so hard to advise when we have only snippets to the wider story, but if you haven't had a full and frank discussion with him recently, perhaps now's the time. Apart from anything else, lupus changes over the years, and it may be that you are actually a lot worse and you haven't actually said that. Whatever you choose to do, we wish you all the best - and we're here if you just need to sound off. I'm sending love. xx

  • Thank you everyone for your support. I am wearing a hat. No one knows I cut off my hair. I will have to wear it because I don't want people judging my hair cut. It was short before, and I got looks. It will grow back, but it does seem to grow really slow. It still itches like crazy.

    I have been seeing a therapist with my daughter because she is having trouble with school. I talk to the therapist once and awhile. I had some trauma as a young lady, so I have a lot of emotional problems.

    I can't sit out cooking. If I don't cook, no one eats. I can however tell my husband I can't cook, and we will do take out. However, I am the one who gets it sometimes.

    It has been a long winter, and it isn't warming up here yet.

    I am not going to any more doctors. I have a $3000 deductible and then I have to pay 50% of out of pocket after that. Since the bloodwork shows and doesn't show, I can't afford to keep getting tested every 3 months.

    What upset me the most yesterday was forgetting an important drs appt for my daughters knee. Even if I was reminded, I would forget. I look at my apt book every day. I can't fix that. I seem to be overloaded all the time. And I have had depression my entire life. I won't go on meds for that again either.

    I will be ok. I just breakdown once and awhile from trying to be strong all the time. My husband is a great hugger, but it isn't always easy for me to ask for help, I have been taking care of myself for a long time. My mom died when I was 11.

    Thank you all for your kind words.

  • I've been told that it is OK to be the one needing help. Social Worker by profession, it's difficult to be the one needing the empowerment for now.

    I can empathize with the deductible, I recently canceled an Ophthalmologist appointment when I found it was to "set me up" for cataract surgery. My out of network is $7,000 and there is no guarantee the surgery site or anesthesiologist will be in network. I keep trying to laugh at the screw ups. I lost the house keys for 4 days, set the car alarm off and couldn't come up with a phone number for some one to tell me how to turn it off. Partly I felt like crawling in a hole but I also found it humorous.

  • I feel for you Natura. Life isn't fair. If we are strong, we are invisible to all those around us - until we aren't strong anymore - then those around us feel angry at us for not being "perfect". Maybe it's time for a family pow wow. Lay all yours cards on the table. Each of you seems to be hurting in your own individual ways. It's ok, it's human, we all do it.

    Hair is a very personal thing, and I see from your photo that yours is very beautiful, and it will be again.

    I understand about taking care of yourself for a long time. My mother died when I was 17. I suffered sexual abuse as a child (not from a family member). It was never discussed, although it was known about. My first marriage at age 18 was to an abusive, drunken "child" who ran away and left me pennyless with two children. I raised them alone and worked three jobs to support us. They both now have serious mental health problems, and failed marriages. My second marriage is to passive aggressive man. His main focus and worry is himself. So I am still caring for myself - alone. I wonder sometimes if this a trait among Lupus sufferers, and all auto immune disorders - our own body attacking itself? Yes, you will be ok because you have always had to be ok, but it's also ok to take a time out, and it's ok to rant and let go on here. You are among friends. :)

  • Thank you catlady. Your post made me feel more human, and it's ok to not be perfect. I also had an assault when I was 13. Never dealt with....buried it away. Maybe it's coming out now. PTSD. Anyway, I think I will just wear the hats. I was going to get a wig, but it will probably irritate my scalp. It will grow back.

    I have to forgive myself for all the stupid things I did in my life. That is another thing I have to face. Made a lot of mistakes. Have to keep moving forward. Change what isn't working, and try to heal.

    Not an easy task...also had an abusive mom and 2 creepy brothers. Surprised I am still standing sometimes. I think I am going to plan a retreat for myself. Will have to wait till kids are out of school in June.

    Thank you again everyone.

  • Natura you are so lovely and I hate to hear what you're going through. Your hair will grow back!!! I am proof of that I had to shave mine bald, people at work didn't like it but I said "stuff them" my hair was falling out but I rocked my bald head and loved it. At present I've got patches on my face, my chest looks like I've been burnt and my scalp and behind my ears are weepy, flakey and sore. I won't bore you with everything else that's wrong. The people on here inspire me and you are one of those!!! Ask for help when needed and know that you're not alone in this horrible battle. I'm sending you the biggest hug I can manage and lots of love. Keep posting and let us know how you are xxx

  • Dear Natura,

    You have been so supportive and upbeat to me and so many others and your bright optimism always shines through. You are in a tough place at the moment but maybe sometimes through the worst comes something better.It is now time to give yourself some TLC and let the others in the family know you need much more practical help.

    Your hair will grow back but maybe by cutting it they will realise Mum needs some real looking after too!

    Sending many hugs across the ocean and make sure you take care of you!! C xx

  • Hi Natura, nothing to add to what others have suggested but I hope you feel more appreciated when you read people's comments on your post. I lost my hair once over a few years as a kid and everyone said it was psychosomatic. Then again after my youngest son was born when hormones were blamed. It was horrible but it grew back and is now my pride and joy although I do nothing with it and don't really think of myself as a vain person at all. I think losing it as a kid (I had severe eczema) and my mum's response to this have formed me on many levels. But I knew at the time that it wasn't only a cry for help but a visible manifestation of a physiological condition. My late parents were very loving and I was lucky for this I know. But they were very busy working and looking after my two disabled sisters so I was neglected by default and ended up caring for my mum when she had a complete breakdown.

    At least you are dealing with things head on and your honesty about your life experiences will help you and your daughter. There is always going to be huge overlap between the physical and psychological with autoimmunity because that's the nature of the beast. Take care and cyber hugs across the Atlantic! Twitchy x

  • Good morning, Natura. I just wondered how you were feeling today? Our thoughts and love are with you. xx

  • All your comments are helping me recover. Thank you .

    there is a lot of stress with my family. My husband is exhausted doing carpentry for 30 yrs, under appreciated, no health ins, no sick days. He is broken. My oldest daughter is in special Ed, and just goes to school.... barely. She says homework is just too hard. We don't know if it's laziness contributing to her problems. My younger daughter is home sick from school for 2 days not feeling well. We are all barely holding together. I don't know what's going on. I am confused at how unhappy we all seem to be. We are taking about moving because we have been struggling for so long in A place that is barely affordable to us.

    I have not exposed my hair yet to the family because I am embarrassed. You are braver than I kit kat. I use to be stronger not caring what people think of me. I am breaking. Not as strong as I used to be. Most people in this town are very superficial. I was raised to not be this way, but the Jones' have judged me for so many years. Plus my husbands family are from wealth and also judge how people one understands illness on the inside. This is a disease That is very misunderstood.

    Today I am feeling ok. Less depressed, but getting sharp pain on the left side of my head Occassionally.

    Thanks you for all your kind words!

  • Hello my dear Natura

    i feel like extending my arms and give yoy a big hug and a kiss on the head. We here understand the overwellming fear that comes when you breakdown with lupus. I had a serious meltdown and a feeling of hopelessness at the end of 2014. I could not see beyond my pain and exhaustion. you are right to feel d way u do but i tell you u will get better. Although we lupus pple may have more down times than good times but please forward for the hope of better and happier times. Even if the weather seems gloomy today 2mro may be a bright day. Treat yourself with some "me time" do something you fancy when you are able to. Rest !rest !and rest!. Dnt give up on your dr's keep reporting to them of your health development and changes.

    big hugs and God bless


  • Everyone has been so supportive and kind. Thank you all! Thank God there is a place to go for support. I am feeling better. I may go to a dr next time I feel out of breathe. My heart flutters have subsided for the moment too. And pain in my back. I am blessed with having all of you in my life!

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