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sunstreet

Anticipatory Grief ~ Life with Lupus and Diabetes

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Hello to all,

It's been a very long time since I've been on these forums.  I have not forgotten any of you, nor the wonderful safe and supportive it is here.  It was necessary for me to be off for some time for my own needs.  I am finding myself feeling more and more grief with my declining health and subsequent knowing I can no longer perform at my position of Pharmacy Technician due to Lupus mostly.  My diabetes is very well controlled and been a type 1 diabetic for as long as I can remember.  The Lupus though is a challenging and every changing array of flares that attack different parts of my body. 

I first joined these forums after the passing of my cats Sunshine and Street, and then when my wife chose suicide I found myself on here a lot.  I find it so hard to be in need of support as a lot of what I do at work is supporting our clients at the Pharmacy with all that they are dealing with in their lives.  It seems after all these years and healing and wisdom I've learned over the years.  I still find it very difficult when it is I who is need of support. 

I have a stubborn streak in me I suppose that just doesn't want to acknowledge that my load feels so heavy and that it is alright to ask for some support.  Hmmmn I wonder why that is?  A good question for my therapist I suppose :)

I think when the load felt just a bit too heavy was when my rheumatologist, my endocrinologist, my kidney specialist, my cardiologist and my GP were all telling me I need to stop working.  For me you see to think on not working; well you might as well be taking the air away that I need to breathe and live!  I so much love to help our clients at the Pharmacy, support them when their loved one is battling cancer, or a family member lives with Alzheimer's, or they just got newly diagnosed diabetic, or someone just died, looses someone to suicide,  or a myriad of other situations where my manager asks me to be a support.

As well I am having cataract surgery this Monday morning coming and I am experiencing so much anxiety/fear about it that it is waking me up in the night.   I understand where the anxiety and fear is coming from and that trauma is history and happened so long ago.  I fled all that abuse so very long ago.  And yet here it is waking me up in the night.  No matter how much I tell myself I am safe now.  Ugh!!

Anyhow, thanks to those who've taken time to read my post.  I encourage you all and you are in a safe place here.

Blessings, Carol Ann  

Edited by sunstreet
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It's so lovely to see you here again, dear Carol Ann, and of course we remember you! I'm so sorry to learn of your physical health issues, and of your facing cataract surgery on Monday. You have so much on your plate right now, and I hope you can feel our collective arms around you, welcoming you back with healing thoughts and caring hearts! 

Just a quick tip: You might consider obtaining one or more of Belleruth Naparstek's guided imagery CDs (also available to download as MP3s) to help ease some of that anxiety and fear. If you click on the links, you can listen to samples of each:

Meditations to Promote Successful Surgery

A Meditation to Help You Be Relaxed & Awake During Medical Procedures

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Dear Marty,

Thank you so very much!  I actually have a lot of Belleruth Naperstek's guided imagery CD's but I don't have these that you reference and I didn't even think to look!  Thanks so much!  It is good to be back.  Thank you for remembering me :)  I feel the collective arms around me with loving thoughts and caring hearts. 

Thanks again so very much!

Blessings, Carol Ann

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Carol Ann,

It is so good to hear from you!  I wish I'd had those meditations a couple of weeks ago (I went through eye surgery).  Will be thinking of you as you go through your surgery Monday. ( I have another one to go through but am waiting for Medicare as the last one I had to pay for.)

I'm sorry to hear about your advancing Lupus.  I retired 3 1/2 years ago when I lost my job for the third time during the recession, and I haven't regretted it.  I'd planned on working until I was 70 but it didn't work out that way, my eyesight has gotten worse and worse to the point I can't drive at night so I decided it was time to be done with commuting.

:)  Blessings and peace!

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Dear Kay,

I just spent some time composing a response to you and clicked on submit reply but not showing up in the discussion here :( So going to send this and see if it works and if it does I will respond again with more :)  Where there is a will there is a way!

Blessings, Carol Ann

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Dear Kay,

 

Thanks it is good to be back!  Kay, I am so sorry to learn that you too had to have eye surgery.  Sorry that you were not aware of Belleruth's meditations before hand.  Thank you for thinking of me!  I am sorry that you are need of another surgery.  So tough all the goings on as we age hey.

 

I am sorry for the reasons you needed to retire earlier than you had planned but I am glad that you have not regretted it!  Thanks for sharing that!  Isn't that just it sometimes we make a plan and sometimes for a myriad of reasons we have to change the plan and initially feels difficult and wrong painful even and then later we see that the change was a blessing after all.  Thanks for helping to remember that Kay! Thank you for sharing.

 

Thank you for thinking of me tomorrow morning.  I am feeling less stressed about it today than I was last night so that is encouraging. They will be doing my right eye tomorrow and then in two months time they will do my left eye.  Thursday I will be going back to the hospital to have an echocardiogram and a carotid duplex done as the docs are hearing something that they feel needs to be checked out.  I am holding some concern about that as well.

 

I use a walker now to get about and haven't been able to drive some time now due to damage Lupus has done to my muscles.  I was resistant to the walker intially....hmmmn that seems to be a pattern with me :) Anyhow love it and find it keeps me independent and mobile.

 

I don't have another love in my life.  Came close once since my wife Melissa chose suicide but it wasn't meant to be.  I am happy in my life though I have 3 lady friends all around my age and all of us living with an assortment of chronic conditions.  People call us the gentle warrior women :)

 

Thanks also dear Kay for the private messages you sent that I received last night when I signed in.  It was heartwarming for me; thank you.  I am sorry that I did not come on to say that I needed to be off the discussion groups for a while I don't think.  I did not intend to leave anyone wondering about me.

 

Well fatigue is a huge part of me life and need to post this and then have a nap, rest awhile and will come on again a bit later and read and respond to some of the discussions.

 

Thanks again Kay.

 

Blessings, Carol Ann

 

Edited by sunstreet
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My dear Carol Ann,

I only wondered about you because you left a lasting impression.  You're a really wonderful person and I haven't forgotten you after all these years.  Your handling of a very difficult situation was impressive and I've found you inspirational.

You're in my prayers today as you face your surgery.  I hope all goes well with the echocardiogram and carotid duplex.  I'm glad you have friends and you can be supportive of each other.  I, too, am going through life without a partner, it just didn't happen, no one is even close to being what George was to me, I don't choose to "settle", so I go it alone.  I have my dog and cat and that provides a lot of interaction at least!

I've lost what I posted too, but I think it's usually when my fingers move too fast and I exit out before it's had a chance to fully save.  :unsure: 

Lupus is a pretty hard disease to live with, so I'm glad you're getting by, even if you do need a walker...my sister has to use a walker because of balance issues.  Stairs are hard for her.

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Dear Kay,

Thank you so very much.  You had a lasting impression on me as well and found you inspirational as well and you are a wonderful person too dear Kay.  Thank you for your prayers and well wishes for surgery today.  Handy dart is picking me up at 750am and my check in time at the surgery day care is 8:25am.  I am as prepared and as calm as I can be.  My blood sugar is at 5 mmol/L the measurement in Canada is different in Canada for blood sugar but I am quite happy with a blood sugar of 5 this am.

I best be getting my shoes on :) Thanks again dear Kay

Blessings, Carol Ann

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Well, I am on the other side of cataract surgery....yay!  It really was not as bad as I had let my imagination think :) I did have conscious sedation but it was a light dose so I was aware but did not feel anxious.  My Opthalmologist knows how much I love Vivaldi so he had Vivaldi, The Four Seasons playing for me :) It actaully was this lovely light show of purples, greens, yellows, white much like a kalaidescope.  I did find my mind wondering to my Melissa and wondering if this is what heaven was like for her.  These beaurtiful colors and this sense of calm and peace.  I remember smiling.  I did not feel any pain at all I did feel some pressure when the new lens was put in but not pain.  I had a post operative appointment this morning with my Opthalmologist and he says things are looking great and said my vision already was better than he expected and told me it would only improve more the next few days as my dilated pupil goes back to normal and the blurriness will go away completely.  I can already tell it is such an improvement.  I go back in two weeks for another recheck and then will be given an appointment time and date for the cataract surgery for my left eye.  It so heartwarming for me that I felt Melissa's presence and found myself thinking of her.

I had a voicemal when I got back home today.  I am next in line for a hearing assist dog and that has me feeling so very happy!  I have been wanting this for some time. 

Anyhow wanted to update you all that all is well and the cataract surgery went well.  Thank you all for your prayers, well wishes and support it really helped me so very much!

Blessings, Carol Ann

Edited by sunstreet
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Thank you ever so much for the update, Carol Ann, and for describing so vividly your cataract surgery! (I am facing that same procedure at some point in the not-too-distant future, and I appreciate your sharing those positive details!) I'm also relieved to know that you came through with flying colors. Now just rest and focus on healing. 

And just thinking about your getting a hearing assist dog makes me so happy for you! How exciting is THAT?!  

Sending healing hugs to you 

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Thank you so very much Marty!  It really was not as bad as I had anticipated.  And you will enjoy the Light show!  The pupil stays dilated 2 to three days and vision is quite blurry initially so you will need to wear sunglasses for sure the first three days after.   Thanks yes I need rest for sure and a lot of pampering.  I am beyond excited at getting a hearing assist dog soon. Thank you for the healing hugs much needed! 

Blessings, Carol Ann

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Carol Ann,

I'm glad the surgery is behind you and it went well, AND you get to have a hearing assist dog!  My dog isn't a service dog but he is my life and I can't imagine not having him in it!  I hope the one you get will be perfect for you!

I felt the same about my eye surgery, while it wasn't comfortable, it wasn't as bad as I'd imagined and best of all, I can still see!  I have a sister that was butchered by an eye doctor, she can only see five hours a day with the aid of some sclera lenses (you can only leave them in five hours).  This happened when she was still young so it has altered her life.  She was awarded nothing in her class action suit against him.

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Dear Kay

Thank you so very much.  I am so happy for you that you have a dog in your life.  The fur babies help us so!  I am glad that your cataract surgery was a similar experience. I am so very sorry to learn of your sister's nightmare! How terrible for her!

My pupil is back to normal now, still have a bit of blurry vision but is clearing more and more.  And wow the difference in my vision is astounding already!  So motivated to have the two months pass and then have my left eye done.

The echocardiogram and carotid duplex went as good as those things can go for me.  I am glad I am on the other side of that now!

Oh my heart is heavy though for I know I must give up my career in the Pharmacy due to Lupus mostly not due to diabetes.  I realized last night that another reason it is so hard is it is another thing that was part of me and Melissa.  Melissa played such an integral and vital role with regard to why and how I ended up in a careet in the Pharmacy; through her encouraging me; supporting me; believing in me when I could not.  It's odd but I feel like saying I feel like I am loosing Melissa all over again somehow. 

I feel some anger at Lupus I wish it would leave me alone!!  If any of you are comfortable to give one I sure could use a hug....thanks.

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Mine wasn't cataract...I had a large cyst on my eyeball (the white part) for over seven years.  At times it'd flare up real bad, it was very uncomfortable to painful and distorted my vision and caused chronic eye infections.  The insurance wouldn't pay any of it but it was more than time to get it removed.  My cataracts will wait for another day.  I have deeply embedded scar tissue that needs removal, that will wait until I'm on Medicare (six more months).  

I will give you a huge cyber (((HUG)))!  

I can understand your feelings.  It sounds like you and Melissa had a beautiful relationship.  I know we continue to miss them, that part never goes away no matter how much we adjust to their loss or living alone.  I can understand your anger at the disease, it is so unfair!  

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Dear Kay,

Oh my gosh I am so sorry that you had to endure that cyst on your eye for so very long!  That must have been so very difficult!  I am just so sorry also that the medical system there is so not what it is here in Canada.  I also am blessed with private insurance through my work place and so whatever our provincial plan does not cover it will.  Thank you so much for the huge cyber hug!  Feeling it!  And here is one for you if you ((((HUG))))  Thank you for understanding my feelings.  Yes Melissa and I had a wonderful relationship and marriage.  I am so blessed to have known and experienced such a love.  For the most part I feel warmth when I think on my Melissa. And yes I agree we will always miss them.  Life does become enjoyable again though which I remember feeling at one time that could never be possible.

Thanks again Kay so very much!

Blessings, Carol Ann

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Well, feeling that low blue feeling again.  I have always marveled at how well my body handled all that it has been through in its life time. I feel like screaming have I not been through enough in my life!  I feel like I have been thrown into this journey of having to say good-bye to my good strong body without any say in the matter.  I am so angry at Lupus and Diabetes both in this moment!  I usually get together with my three lady friends for scrabble night on Saturdays and I had to phone to say I would not be able to come tonight, due to Lupus fever and a mouthful of sores, and my muscles just not wanting to work.  I usually weather a flare so well.  I am not sure why now are my auto-immune diseases effected my emotional health so!  I have been living with both of them for a long time. 

I think perhaps it is really sinking in that I have to give up my career due to my declining physical health.  I usually have the answers, and know what I need to do.  With this I feel at a stand still not knowing what to do next.  I phoned my therapist this morning asking for a call back and I have not done that for such a very very long time.  My therapist called a bit ago and we talked for a bit and I booked an extra session this coming week and will go in on Monday to brainstorm and see if together we can figure out what this almost panic I am feeling is about.

I miss the days when I could just get my vehicle and drive to the ocean and walk the seawall.  I miss being independent. I have asked one my neighbors to come and help me get my dinner ready.  I miss being able to do that on my own all the time!  Thanks for listening.  I am confident I will figure it out and I know this feeling state will dissipate but man while you are in it! It's deafening! It's so hard.

Blessings, Carol Ann

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I'm so sorry, dear Carol Ann :( ~ I know it's hard. Significant losses all. I've no magic wand to fix this, or words of wisdom to make it go away . . . I just want you to know that we are listening, we care ~ and you are not alone 

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Dear Marty

Thank you so very much!  I am feeling better than I was earlier.  I used a few tools that I have not done for a while and it helped me a great deal :) One is I read some past entries from my journal and it helped to see how far I have come in my journey of healing overall.  The other is I did a pro and con list with regard to retiring; and that was very helpful because on the pro side there where quite a few things that I had not thought of before. And the final thing I did was talk into my tape recorder and in doing that I think I have some insight into what my fear and panic is about and I'll discuss that with my therapist on Monday :) The last thing I did was "I got out of my head"  Melissa use to say that to me whenever I starting ruminating over something that I could not figure out.  She use to say we don't always have to know the why's and sometimes we never will. Now isn't that ironic for the why's of her choice to end her life was the biggest one of all of leaving me wondering why!  Ah I wish you all could have known her she was such an amazing woman.  And finally I told myself that Lupus and Diabetes are part of my life and the more I stress about that the more difficult they are to manage.

Also my neighbor that came to help me with dinner we had an amazing conversation about the local seniors center and all the things going on there and how wouldn't it be lovely if they had a sing a long night or something. Well, guess who is going to give the director a call on Monday :)

I am patting myself on the back for coming back here to this wonderful safe place with wonderful people :)

Thanks again Marty

Blessings, Carol Ann

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Carol Ann,

Losing our independence is a huge loss to adjust to.  If a person is low income the gov't will furnish someone to do things for you a certain number of hours a week, my mom got $1,200+/month and her home was paid for and she qualified.  They can cook, clean, get groceries, run errands, I forget the number of hours they are paid for.  

I'm sure we would have loved Melissa, I always wished everyone here could have known George too. ;)  I hope your day goes better today and thank God for your neighbor!

And Carol Ann, we're so glad to have you here!

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Dear Kay,

Thank you so much!  Yes; it is a huge struggle for me to be loosing my strong body and to become so in need of help with so many things that I took for granted before.  Yes thanks I am aware of home support that is available to me and am in the "system" as they say.  I do have home support every morning to help me shower and get dressed and they come again in evening.  I am due for another assessment soon and I expect they will increase the amount of support I am allowed.  Yes, thanks for the reassurance you would have loved Melissa.  And yes I hear you about George and I feel I do know him some through your posts and what comes through is what a wonderful man he was and how hard it is to loose our loves.

I  have been offline for a few days for I was hit with fatigue and at those times my energy is fairly much nil.

Thank you dear Kay I feel so supported, understood and welcome here :)

Blessings, Carol Ann 

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I like the quotes that you have at the end of your posts, Carol Ann. Sharon Salzberg is a favorite of mine. I am sorry that you are having health issues. You are right to say that this is a caring place. I continue to find loving kindness here. You are in my prayers and I send you hugs. I am a big fan of group hugs. Anne

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Dear Anne

Thank you so very much! I must admit I am struggling with the decline in my physical self very much so.  I feel it such a tremendous loss!  I am an optimist though so that is on my side :) I always see the glass half full versus half empty.  I love prayer and hugs too.  I pray for all who are grieving here such a hard journey.

If you like Sharon Salzberg, you might also like Mary Oliver another one of my favorites. 

Blessings, Carol Ann

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Oh, what a treasure Mary Oliver is. I think I have all her books and I love her poetry. I have followed her for years. I like it when I find something that she reads to us. I cannot name one favorite poem because there are so many. One of the books I purchased was her Dog Songs. I love this book. It came at a time that my sweet Benji, a rescued Schipperke-poodle suffered seizures and his heart became too weak. I hated that he was only with me for less than a year. I am working my way through Upstream. I have not found a book group here that wants to discuss it.

I do understand about health issues, Carol Ann.  I have recovered from congestive heart failure and now work hard to keep my heart failure in check.  Ill health is one of the challenges we deal with especially when we have lost someone so dear to us.

It is hard to focus on caring for ourselves when we really don’t have the desire to go on after someone we love dies. But self-care is what we have to do. I think caring for ourselves is one of the gifts we give ourselves. Your health issues are many. I am sorry that you have the challenges you do.

My heart aches for the new grievers for I know that their journey is just beginning. If they are here on this forum then I believe they have a chance to get through whatever loss they are going through. We heal together, don’t we?

Anne

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