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Life With Lupus

I am a "downsized" lupus survivor with a tbi


#1

I am a 68 year old woman who has been fighting auto immune diseases since she was 10 years old. I was diagnosed with lupus at 21. I also deal with Hashimoto's. I have had three total joint replacement surgeries, a kidney related surgery, and back surgery, as well as a few minor procedures. When I was younger, I spent a great deal of time in emergency rooms seeking treatment for painful episodes of pl

ueritis, pericarditis, and costochondritis. Now, I really appreciate the existence of immediate care facilities.

The past 16-18 months have been an extremely stressful period in my life. It is a period that included new painful symptoms and the diagnosis of additional chronic health problems. It is a period that included the death of my father and a physically daunting cross country trip to bury him. It is a period that found me dealing with severe side effects from Cymbalta (duloxetine)and then experiencing what the FDA calls "duloxetine withdrawal syndrome." While going through this experience, I fell. I fell hard. I suffered a concussion - mild traumatic brain injury - and injured the arthritic joints in my right hand, wrist, and shoulder. I fell in February but did not get appropriate imaging until April.

As I started the therapies required for physical rehabilitation, I was also preparing not simply to move but to downsize. Sorting a life time of possessions required not only tons of physical energy but also a great deal of psychic resolve. The process was was so stressful that I did not properly protect myself from the sun. The stress and the exposure to ultraviolet rays triggered a lupus flare.

Now, I am on the other side of the move and the other side of the flare. I am organizing my apartment - I still have too much stuff. I am also organizing my time. I have been living in crisis mode. My nutrition has suffered and so has my regular exercise routine. Over the next few weeks I will be organizing my new space and my time to promote rather than to detract from my wellbeing. I will be learning how to cook in a new and much smaller kitchen. I will be figuring out how to store my medications to make sure that I can stay on schedule. I am confident that I will be successful because I am a survivor.

The challenge is doing this while recovering from a brain injury. Many of the people that I encounter are having a verv difficult time understanding how I am affected by the brain injury. My memory is shot. My cognitive processing is much slower. I could go on and on. The point is that people have expectations for me that are currently beyond my cognitive capacity. This is very stressful.

Any suggestions on how a lupangeezer can make headway organizing her new apartment when she can't remember where she put anything? How do I make sure that I avoid sun exposre for the rest of the summer? Any suggestions on how to get people to understand that a mild traumatic brain injury is not necessarily mild? How do I get people to cut me some slack while I heal?


#2

My first thought, Ann, is to delegate. Anything that isn't precious to you, ask someone else to handle sorting and taking it away. TBI requires rest and peace, as much as possible.

If you would like to join the TBI community, you are most welcome to. Also, brainline.org (http://www.brainline.org/landing_pages/Family.html) is a good resource, and so is the Northern Brain Injury Association (http://nbia.ca/webcasts-videos/).


#3

You are recovering from a very wild year. Pat yourself on the back. I wish I had some answers for you, but I'll follow this discussion because I'd like those answers too, just in my own new apartment with TBI. You might want to edit your title from TMI (Too much information) to TBI (traumatic brain injury).

Love ya!


#4

I have been dealing with fog for about 30 years. I am honest when I am around others and just tell them I am having "fibrofog" because that was what it was intially, before I knew I had lupus and sjorgren's. At the time I explained at work what it was to my small department. I was open about the fact that too much noise quite often triggers the fog. I go on over load. I still have this issue but I don't have to worry about a job anymore. So, my friends and relatives all understand what I go through and all are very supportive. I am very lucky.


#5

Probably the TBI caused it, just like my mistake about Tyler Perry that we talked about a little while ago. I can feel the fogginess of lupus fog, that things are just slow and not functioning well, but I know that from my post concussion syndrome, it is really clear that for me, it damaged the part of my brain that is able to retrieve information. I love to learn, but so hard for me to retrieve what I learn when trying to have a conversation or prove a point about something. It has made me more of a recluse because I can't even carry on a full conversation.

You could leave the title as it is, as proof that you do have TBI, or, if you want to change it, go to the top of the discussion and you will see "Edit discussion". Click that and you can change whatever you want. Then click "save".



Ann A. said:

Thanks Sheila

Now was that mistake caused by my TBI or just plain old fog?

Wouldn't it be great if once you got lupus you were immune from everything else?

Instead Life with Lupus can be long and involve any number of other health, financial, social, and personal issues. Its LIFE with lupus.


#6

I have learned to like labels. I place them on the inside of the cupboard doors.


#7

Ditto, Katherine, to what Ann wrote. Thank you.


#8

I have found that the fog has contributed to spelling errors a lot such as your TMI vs TBI. Rarely did I mix up the different ways to spell the same word with different meanings such as there or their or theyre. In my 40s that began and that was when the fog began too. It still frustrates me.

Ann A. said:

Madere,

I needed to sort in order to decide what was or was not precious to me before the move. The move has been completed so that service is no longer needed. I have downsized from a five bedroom house with a great deal of storage space to a two bedroom apartment and one 5X15 storage room.

I am now dealing with a different set of challenges and I

am asking people with lupus for advice on my current challenges for specific reasons. First, m

any people with autoimmune diseases experience "fog": fibrofog, lupus fog, thyrofog. My TMI symptoms are "fog on steroids."

In fact, I am not sure that it is always possible to determine if a memory issue is the result of the TMI or is fog from my underlying autoimmunity. For that reason, I believe that my LWL friends can offer me suggestions for organization and coping with people while dealing with fog. Moreover, I think they, other people with lupus, can can give me tips using a vocabulary with which I am familiar. I guess you could say that I am looking for support from other people with lupus.

My concern here is dealing with these stressors (fog and the foolishness of people) as triggers of lupus flares. I have experienced long periods of remission because I have learned what triggers my flares and how to avoid them or mitigate the damage they do. So, I am looking to other people with lupus for support in dealing with the famous "but you don't look sick" line. I am not the only person with lupus who has other invisible conditions.

I fell on February 23, 2015. I have learned a great deal about TMI since then, especially after I regained my ability to concentrate on complex web based written information. The therapists where I am doing my physical rehabilitation have provided a lot of written material to go with their therapies (physical, occupational, concussion). My physicians and my therapists are convinced that I will recover from brain injury. The Cymbalta damage may last longer than the damage from the fall. Lupus will be with me forever and I enjoy discussing Life with Lupus.


#9


As a writer/editor/proofreader, this problem and so many more brain fog problems destroyed my career.


reet said:

I have found that the fog has contributed to spelling errors a lot such as your TMI vs TBI. Rarely did I mix up the different ways to spell the same word with different meanings such as there or their or theyre. In my 40s that began and that was when the fog began too. It still frustrates me.


#10

Good to read your laugh Ann. It is so healing to laugh.

I am disturbed that I just read the two posts above that I never saw before. That means Comcast is once again screwing up. Have a good day everyone!


#11


Sheila, it is so difficult to lose ones job because of disability. I understand that. I was 50 when I left the work force. I did some part time work off a

Nd on until I had to stop that too. Gentle hugs.
Sheila W. said:


As a writer/editor/proofreader, this problem and so many more brain fog problems destroyed my career.


reet said:

I have found that the fog has contributed to spelling errors a lot such as your TMI vs TBI. Rarely did I mix up the different ways to spell the same word with different meanings such as there or their or theyre. In my 40s that began and that was when the fog began too. It still frustrates me.


#12

Great advice from Einstein! Thanks!