Immune Disorder Getting Worse, I Fear

[Carolina]

Dearest Sjogren's Angels,

We are traveling, for my husband's class reunion in Iowa (class of 1957!).   I am finding this trip harder than the trip last year.

Of course my neuropathy progressed to my gastro-intestinal system in the past year.  But in addition, I have few options for pain relief, and can no longer take any antidepressants (due to severe side effects developed after many successful years) which were one of my main sources of pain relief.

I am experimenting with larger doses of the Low Dose Naltrexone I have been taking for pain for the past 7 months, and that does help.  I plan to talk with my pain specialist about this soon.  I also know that if I could take more Medrol (a drug like Prednisone) I would have much more relief from the chronic whole body pain and aching I am experiencing.  But that is something I only resort to for brief periods of time.

When we set our travel plans, I reserved hotels with pools for exercise, but I have actually been too exhausted to use the pool after we return from visiting my husband's friends and relatives.

I think this will have to be my last trip, tho' I so want to visit my older son in France one more time, since he and his family have recently bought a second home in Brittany on three acres, half a mile from the ocean.  I would love to see that.   But perhaps not possible.

I'm fortunate that most of my major organs are strong, and that my conditions, while painful and exhausting, are not really life threatening.  Still, I find myself tearful and have bowed out of activities early in the afternoon, the past two days.  Early this morning I woke at 3:30 am and didn't get back to sleep until about 7 am.

My husband is very considerate of me, and understands when I cannot continue with the plan for the rest of the day.

And I truly believe he has a more rewarding time when I don't go with him.  So I don't feel guilty.

I'm just losing more and more mobility and quality of life.  My dryness has also progressed, by the way, which it didn't seem to for ever so long.  My eyes burn at night and I can barely open them when I need to. 

I know I sound like I'm feeling sorry for myself, but it seems more like fear and grief than self pity.  I also feel so 'distant' from my grand children who are all teenagers now (the French grandchildren are in their 20's, as well).  I'm not able to volunteer or be useful to the groups I used to support with various talents.

This is definitely a new phase of my life, and I want to embrace it as best I can.....

I am so glad I can still read and watch TV series, play bridge on line, and correspond with others.  But those activities aren't completely rewarding.  I think about meditation, but my practice (which is the key, of course) is very weak.  I guess I have work to do!

This is just me, documenting my life, I guess.

Hugs, Elaine

[ohiolady]

Elaine,

I am very sorry your condition has worsened. I can sense your pain in trying to accept this new level of disease progression. The constant pain and dryness can seem unbearable at times.  I am sad for you. I hope, in the future, something  will bring a level of relief to you. Until then please know we understand and care.

Anna

[Joe S.]

Carolina, for pain please give CBDoil a try. I am using 15 units 2x per day. It has helped a lot. Carrot Juice, 6 to 8 oz per day will provide your body with what it needs to make its own endorphins.

Fear and anxiety are not our friends. if you are not doing them, do the exercises in "Feeling good" by David Burns. PM me if you wish to try the frequency generator as I may be about 1/2 day drive north of you in the Twin Cities.

If you have a T.E.N.S. unit, hook it up to some copper hand holds a bit longer than you hand. It runs at about the frequency that triggers endorphin release. Use it for 30 minutes to an hour.

Wear SPF 50 clothing. Duluth trading has a good selection for men and women. I cover the AC vent in the car and my lap with a heavy Beach blanket when we travel. It blocks the light and keeps me cool.

[Carebear]

Dearest Elaine,

Your grief and fear are understandable, and like Anna, I can feel it as I read your post.  You never give up, and that is just one of the many things I admire about you.  So I hope you are able to find some relief very soon.  I also hope that your trip to France becomes reality.

I am glad that your husband is such a support for you, Elaine.  That makes a huge difference for our well being.

I have another friend (yes, I consider you my friend) who is dealing with exactly what you are describing.   And in both cases I feel helpless, never able to find words that could change the course of your illnesses.  Or help to ease your pain or fear or grief.

I'm sorry, Elaine.  Truly sorry. 

[araminta]

So sorry you are going through this.

Just picking up on what you say about meditation, I think you're right that practice is the key thing.   I attempt to do a short meditation every day, most of the time it feels dry/pointles/boring, but I still have a sense there is something valuable about making an effort to turn away from our usual thoughts and emotions.   Have you read any books on meditation?   I find Jon Kabat-Zinn very good, and I don't know whether you are religoius, or if so what religion you follow, but recently I read Mindfulness and Christian Spirituality by Tim Stead, which I also found helpful.

Hope you start feeling better after the trip is over - this thing does come and go, and its course is not necessarily predictable.

[irish]

Caroline, I am so sorry that you are having to deal with all this. WE are the same age so I really get what you are saying. I am drooping more than I did a year ago. It ain't fun is it. Part of our journey and nothing stops it.

I know what you mean by feeling less "in tune" with the grandkids. I have told my grandsons that I am so sorry that I can't play catch with them. Those years are gone. I hope that you can get back home and hunker down and get some rest, Also, you know what this heat and humidity does to people like us. When I go outside I get so much weaker and feel like I could pass out. Therefore, I stay inside a lot.

Yes, it is fear and it is grief. What more can I say. I, too, am thankful for the TV and for books and my smart phone which I have become addicted to. Keep on posting girl, you are needed. Just to let you know that I closed on my house last Friday and now need to get my apartment settled. I can only do a little at a time. I didn't tell my kids that maybe I should have gone to the assisted living where I used to work. They have Independent living and you can take the services you need. I loved working there. However, here's my take on the whole shooting match.......crap!!!!!!!!!!(Sorry, I really am Irish)Take care girl. Irish

[lorigacc]

Elaine-
  I haven't been on this board for a long time, but long enough to figure out who the strong women are.  You are hands down one of them.  We are all very different (with a variety of issues)....yet we are alike enough to understand, and know how painful this can be.  You remind us all to keep fighting, to give in on certain things, and to be thankful in the midst of it all.  I will pray for you that you are able to find some relief, physically, mentally, and emotionally.   We all on occasion feel sorry for ourselves, and that is ok.  For me it is grief, for what we have lost. But we have also gained an appreciation for the little things that we still have. You and your children and grandchildren are joined together, no matter the distance.  You are ONE...that is what family is. My grandkids are older now and things have changed some, but I love them, they love me, and we are a part of each other. No matter what. Hang in the Elaine, thank you for all you are to us 

Lori

[happylife]

Hi Elaine

You are very brave, may god bless you.

[quietdynamics]

I have script for Medrol pks.
I have used it for my sons wedding 2 years ago
And recently for my daughters college graduation and dinner.
I really wanted to 'be there' and enjoy these occasions.
For these two times since they were short I did not take a full course and just did the lesser dose.

My Dr. knows this.
For the occasional trip, special event it is something to consider as a prophylactic measure to symptoms/flare. For gastro issue I have dicyclomine on hand which I take before going out. Stress can set that off.

Hope during your trip you can make it into the pool ...and breathe.

[Skylar]

(((HUGS)))

[Carolina]

Dear QD, I usually bring my 'supply' of extra Medrol on trips...this time, somehow, I forgot.

So, I'm just really wiped out.

I made a post to answer each of you, as you are all so kind.  But I 'lost it' before it was entered.

More later.

hugs, Elaine