I know that stress builds up over time. I feel like a pressure cooker without a release valve. I have so many serious, ongoing issues. I have an awful lot of pain in my jaw right now, due to jaw necrosis. A part of my jaw bone has died off and is coming through my left inside lower jaw. I was told this can happen due to biophasphonates, the medication in most osteoporosis medications. At the same time I have lung nodules, within my lung tissue, causing dry cough, fever, headaches, chest pain and shortness of breath. I have a moderate amount of blood in my urine, (interstitial cystitis), and am scheduled for a CT scan of my abdomin, with contrast. I also have ongoing skin cancer treatments, biopsies, Mohls surgery, and PDT treatments. My pulomologist, rheumatologist, and infectious disease doctors all have differing opinions as to what my lung problems. This is after having a chest X-Ray, CT scan of my lungs, and a bronchoscopy . My life is driven by my doctor appointments. The only time I get out is to go to the Drs. Anywhere between one, two or three appointments a week.
How does anyone find their way out of this wildly entertwined health madness? I am at a lost.
So sorry to hear you've been delt such heavy diagnoses.. im plaued with ongoing serious disease issues myself so I totally sympathize... I just try to take it all one day at a time and realized it is what it is. Everyone has some special person, place, thing or thoughts that bring them serenity so its just a matter of finding what works for you. Emotional health and well being is so important to try and maintain while we're physically falling apart
I appreciate your insight. For awhile now, what is, is, has been my way to continue on with more tests more meds, and just getting thru my day
I hate feeling so dependent on others and feel like such a burden. I know this depression and feelings of being lost will pass. Right now, with these new issues, it is difficult. Thank you dawncelest. It helps knowing others understand
Sometimes (often?) life is a battle. How could you not be depressed a lot with your circumstances at the current time? That is normal. You get through one medical issue and another pops up. Then you get a respite for a day or two. I can live for a month on one good day. I understand all the physical issues you are dealing with...not because my situation is parallel. I just understand a lot about disease.
Pretty sad when your reading hobby is medical issues and you aren't even studying for school! With a fire in my belly for knowledge and understanding, I want to know all I can about SLE and related auto-immune disease. The only time I dress up is to go to doctors--YIKES! I was on a doctor's appointment schedule similar to yours and I started getting better control. Spreading out my appointments better...for me I narrowed it down to two doctors a week, only in the afternoons every other day or two days between when possible to rest and recharge---it takes me hours to get going in the morning (when my schedule could be accommodated)
I'm an old hippie woman so I end with...
Love and Peace,
The LupanCatwoman
P.S. Keep writing on the site and others will respond; it truly helps me and so many.
Sounds like me until mid January. Before this it was unending doctor appointments for almost any medical condition I have, lungs, neck, osteo p, cystitis, small skin cancers, physical impairments due to tissue damage in muscles and bones, herniated discs in neck. Dragging all of the time.
Discovered the "afternoon" trick so there wouldn't be so much rush on getting ready to for the next doctor appt. I also spread out appointments, which relieved a lot of the stress. Went to intermediate care (secondary to ER) for injuries (always injuring my self with thin skin) or urgent care or FP for minor things instead of the ER. Really tried to prioritize what was really urgent. Not flipping any more about physical condition, especially after pain management classes. Pain management helped me lose my "panic" button. Kicked dirt with the MDs when they disagreed about a diagnosis--like you all should talk to each other instead of using the computer.
All of a sudden I found that I was finding untold energy and able to stay awake all day. Last Rheumy visit and liver specialist said all blood tests normal (huh?) Even my double-stranded DNA antibodies were way down, almost normal. Vis a vis, I'm in a chemical remission.I never believed it would slow down, me with four autoimmune diseases. Just accepted it and rode it. Not that all is stable, but basically feel more me.Just one more approach. Hope this helps.You got to hold on.
Thanks to both dear LupanCatwoman, and USAGURL, as a fellow flower child, I wish you both peace. Many thanks also for your insights, and suggestions. I have tried to, in most cases, have at least a day between my appointments, I don’t always have that luxury when it comes to scans etc. I don’t make appointments during the morning hours, it takes me so long to get dressed and ready. I am so thoroughly frustrated at this point because there is a discrepancy between my Pulmonologist, my infectious disease doctor and my rheumatologist. They are attempting to gather all my labs etc. together and speak with one another. I have lung nodules which have multiplied and grown in size. I may, or may not have Valley Fever, or Lupus Pneumonitis, or some sort of interstitial lung problems. It is my belief that the Lab, messed up. I don’t want another Bronchoscopy!
I am also experiencing quite a bit of pain with my jaw necrosis, due to the medication I took for my osteoarthritis. The dead bone is pushing through the inside of my mouth, way in the back, behind my molars. I have to see the oral surgeon, and can’t get in for two more weeks. Gosh, I sound like a whiner, for which I apologize. Been a long day. Thank you, again for your support, it means a great deal.
I completely understand how you feel as I am in the same boat. I find myself daydreaming about dying because at this point it almost feels like my only solution. I have two children and I know in my heart leaving them isn’t a option but I’m so tired of this fight. I wish I had more encouraging words other then we are in the same boat but I have gotten closer to god then ever. I don’t know why we were chosen to endure so much pain. Only God knows
My problems aren’t all as severe as yours - yet - but I’m pretty close to where you are in quantity of issues and I’ve been dealing with it all (or not dealing, at times) for over 15 years now. And I TOTALLY relate to the stress, burnout, being fed up (especially with doctors) and the crushing omnipresent fatigue.
I wish I had an easy answer, but I’d be lying to you if I said there were any. We all just do our best one day at a time, one hour at a time, sometimes even one minute at a time because of two very important things: one, there are people who love us, and who we love, and two, life is a gift, even when it is hard and complicated. I will say I have learned (the hard way) that what they say about stress and the immune system is very true, and it is definitely worth going out on a limb if you have to, to be selfish now & then to do whatever you have to do to lower and remove stress from your life.
I’m an old hippie, as well (if you didn’t guess already, from my name! Lol ) and I generally loathe most self-help books, but there is ONE book I’ve read since all this started with me that genuinely helped, and I strongly recommend. The suthor’s name is Toni Bernhard, and she has chronic life-affecting illness, and knows what people like us go through. Her book “How to Be Sick” helped me a lot (in fact, I need to dig it out and re-read it.) She also has a lovely Facebook page.
The only other thing I’d say is to echo the love and hugs the others have sent, and the hope that things start looking up for you very soon. Shakespeare said “when sorrows come, they come not single spies but in battalions.” Maybe you’ve got your full battalion now, and it’s your turn to start winning the war, and kicking them to the curb!! xoxoxox. <3
I completely understand how you feel as I am in the same boat. I find myself daydreaming about dying because at this point it almost feels like my only solution. I have two children and I know in my heart leaving them isn't a option but I'm so tired of this fight. I wish I had more encouraging words other then we are in the same boat but I have gotten closer to god then ever. I don't know why we were chosen to endure so much pain. Only God knows
Bill Cosby said; through humor,you can soften some of the worst blows life has to offer,once you find laughter,no matter how painful your situation might be,you can survive it…in the blur of lupus,I try to cherish the little things,our life is only a breath from being over…I’m thankful to wake up everyday and be alive,even though my body is alive with lupus,serious heart and pulmonary problems,5 casts in 4 months,skin cancer surgery…AND STILL IN A CAST!!! Major surgery on hand and wrist…and very challenged with the use of both my hands and wrists,“ONE DAY AT A TIME”!!! GOD hAS A PLAN FOR US LUPIES …I’m also very thankful that I have all of you I can vent to or help in anyway I can…
Sometimes it is impossible to remove stress. I have to work and within 2weeks both my parents ended up in the hospital. Mom was placed in a nursing home we don’t know if it will be permanent. Dad the drs cant find his internal bleeding. Im at my wits end. I hurt every day most times I wanna cry. I feel guilty if I can’t go visit my parents every day. Plz any suggestion?
Dear Mark, you’re right, sometimes we have no control, we can only control our reaction to the stress. I have found that at times, the only thing that helps is a good cry. Go to a private room, and have a good cry. It doesn’t help long term, but will at least momentarily release stress.
Guilt helps no one. I am sure your parents understand. Perhaps it may help to talk with their Drs. and/or nurses . Let them know you have lupus, and are not able to visit as often, so you will be calling more often to receive updates. Get the phone number of the nurses station, for those taking care of your parents, and call and ask for updates, then you can be put through to the room to speak with your father, or mother, whomever you’re calling.
Are you taking any medication for anxiety? You may want to discuss your situation with your parents with your doctor. He/She may choose to put you on an anti-anxiety med for a short time.
I am so sorry Mark, but you are not alone. There are many good people here who care. Let us know how you’re doing.
Sincerely,
Barbara
mark smith said:
Sometimes it is impossible to remove stress. I have to work and within 2weeks both my parents ended up in the hospital. Mom was placed in a nursing home we don't know if it will be permanent. Dad the drs cant find his internal bleeding. Im at my wits end. I hurt every day most times I wanna cry. I feel guilty if I can't go visit my parents every day. Plz any suggestion?