Too much tomanage

Posted by boru @boru, May 24 9:09am

Retired woman with exponentially increasing autoimmune symptoms for which I have received IVig infusions which made in place symptoms worse and added new ones. Following the infusions, I had bad reactions including severe Blepharitis, extreme undisclosed skin disorder full face, ferrocious night sweats (just about the head) and extreme hair loss. I have been given only treatment for the Blepharitis and it didn't work. Blood shows borderline anemia and very large, still immature RBCs and platelets. I need some address to the red leather face and the balding. So far, I have not been taken seriously. I feel sick all of the time. I have severe osteoporosis, thoracic scoliosis, spondylolisthesis and severe stenosis of the lumbar spine, CKD, IBS, hypothyroidism, aortic aneurysm, high BP, high cholesterol, cysts on lungs, kidney and pancreas, persistent sinus infections, Sjogrens and asthma. I am post cervical fusion. Any suggestions?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Becky, Volunteer Mentor | @becsbuddy | May 24 9:27pm

@boru Oh, my, you do have a full plate! I’m glad you found Mayo Clinic Connect and hope that we can help! Just a few questions.
Which of your AD are not new and you’ve been dealing with them for a while?
Which new one are you having the most difficulty with?
Do you have a friend family member who could help?
Are you seeing a rheumatologist?
So, as I typed this out , I began to see where you could use some help.
Find out if the doctor’s office has a nurse or social worker who could help you untangle everything! Do they have a support group that you could join?once you spend some time with this person, you will be able to see order to it all. And the other members of this group can help you, too.

boru | @boru | May 25 9:06am

Most of disorders have been in place for years. Recent add-ons are CKD, Blepharitis, skin leathering with redness itching, crusting and shedding, night sweats (head only). extreme balding and pretty bad arthritis. I have never been able to manage all of these disorders. I see a different doc for each disorder mentioned, except a rheumatologist, and there is no one who has made over-arching sense of them. I’m going in so many different directions. I have reactions to statins, infusions, NSAIDS, etc. On Eliquis for PE following day surgery to leg. I have had cellulitis twice from paper cuts. Most of friends have passed or are incapacitated. No support.

boru | @boru | May 25 10:46am

Thank you for ghe hugs

blm1007blm1007 | @blm1007blm1007 | May 25 4:43pm

In reply to @boru "Thank you for ghe hugs" + (show)

@boru I am 83 and 7 months and shortly after I finally found out I had Bronchiectasis, a couple of years ago, and a skin condition I said to myself

"Life can become more complicated, then ever before, in so many ways"

I said this regarding the time factor for what needs to be done for myself, ourselves, with our health and managing all we have to do to live each day. Especially if you live alone as I do also.
It also becomes complicated for the doctors who do all they can to help us with our health issues we have. Both the doctors and ourselves find ourselves working together in deciding how to treat our health problems,. Which ones to consider for treatment without complicating other health problems ......and our daily life more so. Which medicines or ways of treating and dealing with all.

Overall, for me, I try to remember to give much thought to all and then go with my gut feeling and that quiet whisper we can hear if we listen to ourselves with honesty.
Sometimes having to face that honesty ....at any age.... in any circumstance,....when things pop up for us and we have to make decisions, have to deal with all kinds of matters and problems that are not what we want to deal with and hear..... we somehow learn to figure it out. It ain't fun nor easy to do sometimes. However, when we look back and realize we did it in the past and made it this far, we can do it again.

Hoping you find your way to all the answers and decisions you need with the help you are able to seek out.
Barbara

jw9 | @jw9 | May 25 5:27pm

In reply to @blm1007blm1007 "@boru I am 83 and 7 months and shortly after I finally found out I had..." + (show)

@blm1007blm1007
I believe that the kind of suggestions you make here are the most helpful in learning how to cope with long illness. I love the "gut feeling" and "that quiet whisper" (I think that's what I mean by intuition)

"Life can become more complicated, in so many ways, than ever before."
I have been telling myself something like this and it has helped with acceptance. My parents were very healthy and active into their 80's. I have been living with disabling chronic illness half my life. I'm 68 and things definitely have become more complicated!

@boru There are good practical suggestions here from people who have been through long illness. I hope you return to this support group and let us know how you are coping.

tallypy | @tallypy | May 29 3:27pm

I'm so sorry that you are having to face all of this pain and struggles. Sometimes I just sit quietly and breathe in (4 count), hold my breath (5 count) and breathe out through my mouth (6 count). At least for a few minutes I am thinking about something else. I crochet (have to pay attention to my stitches). I have several kid's coloring books and a 64-count box of crayons. I concentrate on coloring in the lines and choosing colors. So what if it's a kids book. I enjoy it and it takes my mind someplace else out of my body. I also scrapbook. Is a simple sitting still hobby a possibility. It doesn't change the pain but my mind is doing something else for a little while. I will send good wishes and hugs every day.

Ginger, Volunteer Mentor | @gingerw | May 29 6:26pm

In reply to @tallypy "I'm so sorry that you are having to face all of this pain and struggles. Sometimes..." + (show)

@tallypy Welcome to Mayo Clinic Connect, and thank you for cluing us in to what works for you! There are so many different coping strategies that people have shared. Lucky us, we get to pick and choose what to try.
Ginger