http://jewelryatalifeuncommon.blogspot.com/
I took courage and posted too.

Thank you for ur words and time. My diagonis went between lupus and fibro for yrs at the beginning we all settled with fibro and all of the body destroying issues that come with and this has literally taken everything from me. I have no income and no way to get one now. Thank you to my daughter for living with me.I have no one to talk to about my painthey r tired…so I bury it. I got myself off pain meds because I was so afraid of addiction. Sometimes the pain is so has I can’t even talk just breathe…but I don’t tell anyone..I just breathe…but I am proud to announced that I push on that I am not weak because I am broken that really I am stronger than I ever was to have to deal with this pain just taking care of basic needs that is a big step. I/ we are very very stong people. 🙂 wow that felt awesome thank you for letting me rant and not even getting mad lol

loved the article..I have many problems but the pain has gotten so bad all over that I don’t have a life anymore..sometimes when I can’t go to family functions, I think they get mad and think I am lieing …I wish they could spend a few days with me and see how my life has become…I have not been dx with lupus yet. 3 yrs ago the ana was neg. but as soon as I get insurance I am going back and getting tested again. almost every bone in my body hurts now. but I also have avacular necrosis in my wrist and xray on my spine shows diminished blood flow and that scares me it has it too. It hurts just like my wrist does. many other problems are accumulating . long list of things I have been dx with…you would think the doctor would try and figure it out. on my records it shows an unknown arthritis. why not help me. but instead they just give up.

I was diagnosed with FMS seven years ago although it was a relief to finally have a diagnosis myself and my wife and kids didn’t realise just how much life would change. I now walk in very short bursts with a stick or use a wheelchair because the pain in my legs and back is constantly too painful to stand. I suffer from severe water retention with it so have heavy “elephant” legs lol. I have carers in now to help me in the mornings and evenings with washing and dressing. My wife is a star and my kids have a great understanding of my condition and all help. It was so hard to give up my independence and it reduces me to tears. I have almost constant memory problems so avoid talking to people outside of my family incase i forget what i was saying or forget what the name of things are and panic if im put in that situation, i shake and cry, its really distressing.

I can relate to all of these, but #19 and #20 hit close to home. #20 because I would LOVE to take photography. I’ve got 2 of the biggest picture hams I have ever seen that get all excited when either the cellphone camera or the good camera comes out. My kids make wonderful subjects, the hubby not so much, LOLZ!
And in relation to #19, my independence has been waaaay hard to relinquish. My daddy always told me I should become a lawyer because I could argue the fuzz off a peach just because I was so determined that the peach would just give up. I hate having to ask for help for anything, have always been hard headed about doing it myself. I used to be anal about me being the only one to do laundry for years. It wasn’t because my husband couldn’t do it but I felt that he shouldn’t have to. I hqve finally relinquished that chore to anyone who wants to do it.
#22 hits home too. I’ve lost friends and family and have gained others. One of the worst things a family member has done to me may seem trivial, but it made me realize how little he knows me. I’m a tattoo lover and found an awesome “spoon” tattoo and posted it to my fb page. A lot of ppl got it and thought it was awesome so I was super happy. Then my baby brother asks ” what the heck is that supposed to be?” That hit hard and hurt bad- still hurts to this day. I responded with “obviously you haven’t been paying attention for the last 10 years of my life. And you haven’t read that paper I gave you about spoons” I was disgusted with him. A lot of my family has just chosen to ignore the fact that I have fibromyalgia amongst other things. I recently had to remove what I shall call a “toxic friend” from my life. She has lupus and other issues. We were able to relate on the invisible illnesses front and understood it when others without can’t. The problem was that she seemed to WANT to STAY sick and not try to get better or have a better life. Whenever I would go to her house we always stayed in her bedroom. She has a beautiful 5 bedroom 2 bath house (paid for by Idaho housing of course) that she only used 2 rooms of- the bathroom and her room. She rarely wanted to go anywhere but on the few occasions I DID get her outta the house, I realized she was a thief. I’m a member of Melaleuca and am lucky to have an actual store near me. I took her with me and she stole a tube of zit cream. She didn’t take into consideration that they have MY credit card on file and could’ve charged me for it. Not to mention just being with her when she stole stuff could get ME charged with petty theft, even though I didn’t steal. But she didn’t care. I also got thinking that she was trying to keep me at her level of living-or what she called living. She, her husband-who used to be my husband’s best friend- and 4 children(1 almost 19) live off of Idaho housing, Medicaid, food stamps, and her 14 year old’s SSI. Her husband hasn’t worked in almost 2 years cause her mom used to live with them and paid for everything with HER SSI and retirement. I couldn’t stand seeing her live like that. The biggest reason I finally got rid of her is because of the phone calls I would get every month around the 14th. .. med refill day. There was always an excuse- the best was that she was filling her med box and the dog knocked a cup of water over onto her pills, thus ruining them-so many that I’ve lost count, that she needed to “borrow” a few pills. She was an addict plain and simple. She used her gastroparesis ask an excuse-and claimed the gastro and pain specialist approved it- to crush and snort her pain pills. She was so into it at one point she had to buy a new crusher every week! Well, to sum up my whole story since I’m rambling, we ended up having to move a few months ago. We had been trying to cut her out and wanted to change our phone numbers for awhile but she would come over if I didn’t answer my phone. So when we moved, we made absolute sure that she had no clue where we moved to. And since she didn’t know where we lived it was safe to change our phone numbers. I was online and had just changed the hubby’s and was getting ready to hit the confirm button on mine when she called me-so ironic. I let it go to vm, saw the vm indicator light up and listened to her blah blah blah and that she’d call me later. I then hit confirm. Freedom at last! Saw her in the gas station a bit ago and was actually trying to find a place to hide! When she asked where we moved to I gave her a vague location far from us. I made sure she didn’t follow us home too.
The point I was trying to make with my long winded story-sorry readers- was that having ppl stay or gaining new friends isn’t always a great thing. Having her as a “spoonie” was NOT in my best interest. The freedom I’ve had since getting rid of her has been great, most days. My friend circle wasn’t very big to begin with and that dropped 2 in one swoop. So I get a bit lonely now, but I wouldn’t go back. Our family has achieved so much since getting away from her toxicity- ie no more welfare other than SSI for my son, SSD for me and health insurance- that I’m happy. Hubby has a good paying job and we don’t have to rely on the system. I’m gonna stop here cause I could go on all night.

I wrote a blog on this list too. Chck it out: http://phenomenalyouthcanada.ca/invisible-illness-week-sept-10-16-30-things-meme/

Thank you for this as a patient with chronic illness (severe migraines) and a doctor (no longer able to practice).

I cannot begin to.know how lupus feels. That is not one of the many labels I’ve been given. I now have on the.list..IBS,chronic fatigue, osteoporosis, fibro, osteoarthritis, OCD, bipolar, and the lovely one just added…DID. (dissociative identity disorder). I hate the.labels because they ARE NOT me. I may fight these things, but they do not define me. I fight each daily and nightly. But since no one seems to get it fully,I don’t bother trying to explain. Now the Drs are trying to dig deeper..I guess for another label to explain even more BS symptoms. I cannot bother to talk to anyone on my Fb friend list..I seem whiny or lazy,or just irritate them. I was so glad I found this site. Although our health issues are not always the same..we all relate to the crap that goes along with having a disability that no one can see with their eyes.. Even my father says “suck it up, get off ur but and get a job.” I so wish I could do just that..but in his mind..I’m just lazy and want attention. All I really want is to have more good days so I can accomplish at least SOMETHING worthwhile. Thank you to anyone who bothered to read all of this. And thank u to Christine for showing me there are those out there who get it.

I stumbled across your blog when i was doing research on Lupus. I loved the spoon story! The doctors are just starting to work through whats wrong with me. Had mono back in September, since then, still sick. I’ve had 2 positive ANA tests, second one the titer had come down, doctor today said we would do test again in 3 months. Chronic fatigue, tingling in hands, have always had migraines and some pretty bad lower back pain. Going to have an MRI on Wednesday for the back pain. My Rhumetologist and I talked about fibro today and she did diagnose me as having it. She also diagnosed me with Raynauds on my first visit. I’ve seen her twice and liked her explanations today. I thought I had Fibro last year when I was told it was Mono. My general practitioner thinks I have Lupus. So, I guess I’m kind of in limbo until I get tested again in 3 months. She did put me on Cymbalta today, so I will try that next. Loved the comment about Lupus never coming to the party alone! He has friends!

I would like to thank you for your passion to help others. I have just recently myself been diagnosed with Lupus, Sjogrens, Raynauds,Osteoarthritis, and it looks like Lupus Nephritis. After years of off and on signs, and symptoms, it finally makes sense. Your spoons theory is most awesome at explaining to someone who
has no idea.
May God bless you, and everyone out there struggling.

Hi ive got the same like you imat present in deep distress has the invusable illness is very disabling n its not nice when family and services and life in general is dam hard. Pain n cramps constant tiredness n lack of energy n wat all of us have to do is very hard we cant do everything figranted im like you are very interested in hobbys, im very privet person n suffed all my life with anxiety even frm the age of nine wen i lost my nana i lost alot miss her so much she also suffered with pain n life wasnt easy wen we have social phobias. Ive never been one to speack up for myself til i had this condition controling my life everyday is a gamble. There is no set patten n im goung through wat u r sayin . I sobb n cry in pain n do al the right things like vitamuns n the medication which takes agers to put in a caset box for the week ive to do them wen im on a good day which is the day i try n catch up on housework. Family dont understand how it is n say calmdown? I cant make anyone understand me jst my gp n other healthprofesionals who are involved with my care. Its hardto book days out or away for a wkend when you are in cronic pain n cant eat or go to the toilet properly has ibs n stress levels are high. Thank you for writing this ive been writing dayley notes a diary of how every situation n lack of undetstanding from people n services dont belive how it all is quality of life is limited i cant just get up n rush like i used tobe able to n id live to spe.d ti,e on holiday with friends which are posertive lije me yet we have it hard n noone realy wants the burden of me n this illness is awfull i nearly died ladt year becoz of a big flair up wen a doctor stoped my medication after been on it since 2009 after being in icu on life surport uve never been rite sunce n whats happed since is bad luck mostly because people n services arnt helping has good has they shud.

It’s always nice to know that there are people like you around. I admire that you put so much effort into keeping us all sane!

So similar. I have Fibrosing Mediastinitis. About 500 people in the US have ever had this disease and only about 45 have had my particular type. Even most doctors have never heard of it. No treatment, no cure, progressive. But unless I’m having a flare-up, you would never know. So many of your answers are the same as mine. Thanks so much for the site.

I have fybro pain, ruptured discs, have had breast cancer and have just been diagnosed with a stroke….and i am ONLY 51……pain has taken over my world, i am now off work sick and will probably lose my job …but….omg it heartens me to read about other people feeling what I feel, that i am not going off my head and that my complete lack of energy after the smallest tasks is quite normal….under these health circumstances….keep blogging ppl you are keeping me sane.xx

Number 19 is my hardest hurdle right now. The predisone side effects make me even more emotional and forgetful. Number 15 hits home with me also. I was in denial when dx 12/12 polymylagia Rehumatica . Just told myself I would beat this and do everything I was told to do, etc…. Then as the prednisone decreased I wasn’t aware I could flare….. Big time flare in April 2013. Very depressed that I had to start all over with high dose prednisone 60mg and I never left my house for 2 weeks. Lost all the strength, flexibility and balance I worked so hard to obtain through PT. Very depressed. Now that I’m in my 7month with PMR I will be seeing a rehumatologist next week. We are taking this decrease in P slower, currently at 17.5mg, I started symptons at 15 mg and when he decreased me to 10 is when I flared. That is my greatest fear— to flare again. Failure to me and continued loss of independence. Latest problem is I’ve had blurred Vision for months, exam Tues revealed cataracts from P. Ordered new lenses for 2 pr of my frames but will have to put up with blurred vision another 2 wks. Sorry for long post. Once you get started venting— it’s like vomiting— you don’t feel better till you get it all out. Love your spoon story!

Thank you so very much for sharing your life! A friend of my sent your blog to me and after reading your “30 things” I’m like WoW! I’m now trying to respond through my tears! You said so many things that I can relate to (#4,5,9,12,15,16,22) to name a few! I never thought that being diagnosed with liver cancer would reshape my life in so many ways! My diagnosis has fueled me to share my life and inspire others to LIVE!

Diagnosed patients shouldn’t have to choose between career and health. We have laws designed to protect patients who are suffering. http://www.legalmatch.com/law-library/article/ada-accommodation-lawyers.html

I am a new and still unaccepting of the diagnosis patient (I guess). I spent the majority of my life in the pharmaceuticals business and I have learned to be a disease and provider agnostic. What I decided is to handle this on my terms and live as normal a life as I can. My main early symptoms are edema (lots in my feet) and fatigue. I’ve had a kidney biopsy and have early kidney disease. Let’s see what develops; “it” will get a tough fight from me.

This is great, thanks for sharing. I was diagnosed with Lupus 1992 and then it morphed into rheumatoid arthritis…it can be hard to live with an invisible illness at times but attitude (like yours) is the key! Keep up the great blog posts

Thank you so much for your work you do for all of us. I have a question. My mother had Raynaud’s, Shograns Syndrome , Scleroderma, not sure the spelling but I saw her suffer most of her adult life with these issues. Never having tears, hands swollen and purple, no saliva..etc. She passed away from Multiple Systems Atrophy. I understand all are autoimmune diseases. I was diagnosed with Fibro a few years back. Things have progressively gotten worse and still trying to figure out how to function as my entire life has been turned upside down. Do you think that Fibro was caused from genetics?

I know Lupus is very painful especially when you go out under the sun – it alone is very frustrating. Arrrghh! I can understand what you’re going through. Stay strong and full of hope. You are an inspiration especially to others who are suffering the same. Thanks for spreading the words about these diseases and for sharing your story. It helps a lot.

Just finished reading 30 Things About My Invisible Illness You May Not Know. Wow! Thank you Christine for this wonderfully written article! You covered all the important points, stating them simply and clearly. Both my mother and I suffer from Fibromyalgia.
Even after more than 25 years, it can still be hard for family and friends to understand how difficult it can be to live with. By sharing your pain, you have helped lessen mine.
I am grateful.

Thanks for sharing this information. I work with so many patients with husbands and family don’t believe how they could look so good and feel so bad. It wasn’t until I came across Cytokine Induced Sickness Behavior while studying the results of lab tests that a Eureka moment occurred. The cause of the invisible illness became visible. The symptoms were the same but the lab results were unique to that individual. Each requiring a specific program to fit their needs. Anything can set off a cytokine storm. I wrote a blog on cytokine storms. http://wp.me/p2NFGJ-5
Dave

Peace and happiness to you. I have MS and can relate to everything you say. I think one of the most hurtful things I experience are the comments and looks I get when I park in the handicap spot – as often as I don’t, the times I do I hear whispers and comments – “shame on her, she doesn’t look handicap”. If only they knew what it took for me to even get ready to go to the store let alone walk in, shop and wLk out with the horrific pain. Another thing, the looks from the clerks in the pharmacy, I am not a drug addict. Yes, I take pain meds, without my meds I don’t believe I would be here today. Pain wears on your body and your mind. Medication has been a God send to me, so to be judged and made to feel guilty for taking it is wrong. Anyway, great website, I truly appreciate you sharing your feelings, it helped me!

Sweet Christine: My professor at college just sent me this link: at present, I am about to take a final exam for her class. I am a 47 year old woman, who was diagnosed 3 years ago with Systemic Lupus and worst even Systemic Scleroderma (even less is known about it). At the time of my diagnosis, I had received my AAS as an RT a year earlier. I had accomplished my goal as a single mother of two, got that degree and found my dream job. I met who I thought was my future husband and was on top of the world. I can not type the whole story, but let me just say, he could not handle what I was going through, I lost my job, him, and my whole world fell apart. I fell into a deep dark depression. I went for millions of tests for them to figure out why I was so swollen, had a low grade fever, one of them put me in the hospital for 10 days with an infected colon (a simple colonscopy) and I woke up unable to breathe and in Congestive Heart Failure. The worst news, was finding out that I was unable to receive disability, as I had not worked during my 12 year marriage and did not have five years of steady work? I was devastated at the time, fought like hell to get it, telling SS that School for three years and two years of steady work should count. However, I am glad that this occurred, as I am now on a mission to achieve my bachelor’s and then Master’s in psychology. I, unlike you and many other’s have absolutely nobody that stands behind me and helps. I am all alone. My daughter is just 12 now and my son, is not speaking with me. My father is dead, my brothers do not care, my mother worst of all, has no capacity to help anyone else unless it benefits her. I have a few friends, but they do not truly understand. I had zero friends when this all came about, as I was immersed in my man, his three kids, my two kids, school. I am desperately trying to stay focused all the time. I feel heartbroken, yet to others, they see me as strong and lively. My alimony and child support ends in 6 years, my goal: get the degree (masters) in 5 years and find a job within the year…be independent and depend on myself! As far as symptoms, I take at present 11 pills everyday, one of them is so toxic, kind of like Chemotherapy in a bottle, every part of me aches, especially my hands which are needed desperately to type. I am having a very hard day mentally today. God put my preofessor in my life, as she, unbeleivably has two immune system diseases and somehow, although our class in online, we ended up chatting about it. I would very much like to become involved in any small or big way that I can to help. Please do contact me if you can. I am going into the field of psychology with the intention of helping others who are afflicted with such diseases as ours and the depression and anxiety that comes with them. Deep regards, Jodie