Denial of Lupus

[MrsMarigold]

First thank you to anyone listening and replying. I gave a short bio of myself somewhere before but I get tired of my own details. Ha. I’m looking for answers on total acceptance of this disease. Searched for answers for almost 20 years. In 2016 I was finally diagnosed with clinical symptoms matching blood test results. I feel crappy most of the time. I also have a neurological condition which is a growth inside my spinal cord. Benign. It is scar tissue from surgeryIn 2006. So I’m a complicated case where it can be where does the lupus symptoms begin and where do the spine symptoms Begin and how they loop their inflammation back to me. I’m on plaquenil, low dose prednisone and gabapentin and muscle relaxer in between. Also some other things but theses are the main. I’m flaring now. Swollen glands everywhere, rashes suppressed by plaquenil and amoxicillin for a dental procedure. Fatigue, muscle pain terrible headache. Ugh. But it’s my fault.

Having a little sunshine. I think we’ll let’s test it and see if it’s real. I keep testing. It’s stupid. And I feel guilty for being a chronic mess. Help. Just help! Titters

[lupus-support1 Administrator]

Welcome Titters to Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

I understand what you mean about giving a bio of ourselves, but if you could, it would really help me understand you better.

I don't think anyone truly accepts totally that we have an incurable, painful "dis-ease" that stops us from doing what we want, when we want & have to deal with people telling us, "Oh, how well you look", when all we want to do is to crawl into bed.

Many, many people have to wait years for a diagnosis as there isn't a simple blood test & what is aggravating, for many, our blood tests can look "normal"! In addition, most doctors have never seen or treated a patient with SLE & that includes many rheumatologists.

Like you, I have spinal involvement, the result of chronic inflammation & have had 2 very major operations, necessitating a titanium plate & fusion of the lumbar. Yes, nerve pain is a bummer.

NO! NO! NO! It is NEVER YOUR FAULT!

You are entitled to sunshine, but you must use precautions: use coverings that blot out the UV rays:

Hats & clothes: they are expensive, but worth it if you are very sensitive to sunlight. Take care with indoor UV rays too!

Use protective sunglasses.

Use the highest factor sun screen for the country you are in - which means if going elsewhere (a joke - during this COVID-19 crisis) - buy the local products or, go and see a dermatologist, who will advise you as to how to protect yourself.

I have left "the" question for last.

I have had SLE probably since late childhood/puberty. I wasn't diagnosed until my mid-30s because no doctor was actively looking for SLE. I went through 6 rheumatologists, my mother insisted, until I found Dr Graham RV Hughes.

Do I fully accept I have a painful, chronic, debilitating disease? No. This may be a good thing because there is that irrational, but important belief that maybe someday, it will go. It's our brain's way of avoiding a massive depression & it's called "HOPE!"

Denial is OK up to a point: unless it leads to reckless behaviour.

Go ahead & get your sun gear;

use a special parasol to take out the UV rays;

wear the special clothes to protect you;

use sun-screen & limit yourself to 5 minutes a day to see if your body can tolerate it;

see your dermatologist, consultant or GP.

Finally, sometimes we need someone to talk to - not our partners or even friends, but someone professional: a therapist. This isn't a sign of failure. On the contrary, it's a sign of engagement with your medical condition & the opposite of denial. It's called looking after yourself.

Will we ever fully accept our condition? I can't speak for anyone else, but no, I don't believe I ever will fully. We can learn to live with SLE & still have a good life. Will it be the same as we had imagined or hoped for? No, probably not, but that doesn't mean it will not be a good life, lived fully. This is up to us.

We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

If you are interested: lupus-support.org/ and Sign Up.

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[MrsMarigold in reply to lupus-support1]

Thank you for such a balanced and sincere reply. I regret mine has taken so long. My story really is very much like many I’ve read. I’m fairly certain I had lupus as a college student. I had thyroid disease but in the 1970s nothing was known about Hashimotos thyroid. I went on to teach, marry, raise my kids with the never ending and consuming search for wellness. ItNever came. Spine surgery in my late 40s

And another in my mid 50’s I think escalated the inflammation so that my clinical symptoms matched my bloodwork.

Now I’m in my young 60’s and I see behind

Me how this unknowing of my disease

Affected me and all family/friendships.

I’m doing ok on plaquenil and low dose

Steroids and will be adding methotrexate.

My spine is involved so I have neurological

Symptoms and so other meds are also

Taken. I’m a very creative person and

After 3 years of “sorrow “ of discovery of disease and my neurological limitations

I’m finally productive and thinking creatively but much more slowly. So

That’s me. That’s the the story. And now

The story also involves the pain and knowledge of chronic illness and how we are truly invisible people. Others simply

Roll their eyes and want you to try natural

Healthy ways to get well and get well now!

I know there are authentic humans out there. Just hard to find. I’m not a miserable person but I go through some miserable

Times. Again, thank you for your gracious

Response. Titters

[SecretlyDisabled7]

I don't think you are a mess or that it is your fault. I think we are all feeling worse right now, whatever the situation. I was positive for lupus

in the past, am not now. So I have CPPD which I never heard of. I know I need to keep moving, but I just stopped. I have been lounging around and reading, working on a book, just being. I was feeling in pain all the time ( 3 fractured vertebrae and numerous spinal problems, fibromyalgia in fascia) and I lost my dearest person. So became too filled with grief to even bother keeping up laundry, etc. Just stopped everything and feel so much better. Lonely and sad, but continuing all meds and just not moving.

Maybe that is a bigger mess, however I feel better physically than in a

long time.

And, on top of all that, everything is too complicated any more. The computer, trying to do FB (which is locked because i made mistake) And so it seems like reading and writing is my secret key.

[MrsMarigold in reply to SecretlyDisabled7]

Thx for your reply. And I apologize for myDelay. Life is more complicated when we are sick. I hope since you wrote to me you are a bit better? Best Regards , Titters