Author Topic: My Update  (Read 238 times)

lighthouse33

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My Update
« on: May 02, 2017, 10:05:42 AM »
My Update:

I have not posted in quite a while. 

My Sjogren’s is “stable” but my SSA is high.  I have not felt good throughout the fall and continuing till now.  My neuro says I have situational depression that will lift when the situation resolves. 

I brought in hospice a month ago for mom.  Not that she is going to pass away in six months, but, that she was suffering so much with her breathing that I wanted her to get some relief.  She is now experiencing TIAs along with her other COPD ymptoms.  I am her primary caregiver.

What concerns me is this, I had my yearly wellness exam and my pap smear came back abnormal.  I am going in for a colposcopy this Friday. What scares me is, that if I have cervical cancer, how am I going to handle any surgery or treatments and take care of mom at the same time?

Mom continues to be in denial about my illnesses and when I brought up the chance of my having cervical cancer, she just poo pooed it.  At that point, I shut down the conversation.  No use to talk to her about my illnesses, but, if it were my brother, well that is different, everything he has she is concerned about.

Thank you for letting me share.
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Carebear

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Re: My Update
« Reply #1 on: May 02, 2017, 05:49:49 PM »
lighthouse, I am happy to hear from you, but I am sorry to hear about your recent pap test and your mother's continuing health issues.

And I am very sorry that your mother is not supportive of you.  I understand what your neuro is saying about your depression being situational too.  It's been several difficult years for you now.

I've never been in your shoes, lighthouse, so I can't speak about the cancer treatments or your mother's care.  I do hear your concern, and hopefully there will be someone from the forum who can speak to you about that. 

Thank you for sharing, lighthouse.  Please let us know how you make out with your tests.  I'll be waiting to hear what happens.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Carolina

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Re: My Update
« Reply #2 on: May 03, 2017, 06:13:50 AM »
Hi Lighthouse,

I've always followed your posts.  You have had so much to deal with and now you are giving service to your mother, without much thanks or appreciation.  I think you are right to stop trying to share your own concerns with your mother.  We cannot change others, only our own reactions and expectations.

About your pap smears, I had several abnormal pap smears and my gynecologist suggested that I have a hysterectomy since the abnormal pap smears continued even after the usual treatment to eliminate the abnormal cells.

I never did develop cancer, because my uterus was removed.   So that ordeal was taken off the table.
Perhaps all will be well for you, but this is another issue/concern added to your list.

I know you will use your tremendous intelligence and persistence to deal with this problem, too.

You need some peace and quiet, Lighthouse, and I pray that you will find an oasis of calm midst all your responsibilities and burdens.

Hugs,  Elaine
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quietdynamics

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Re: My Update
« Reply #3 on: May 09, 2017, 08:16:57 AM »
Hello Lighthouse..

In my early 20's, pap smears came back with dysplasia.
Cervical dysplasia is a precancerous condition in which abnormal cell growth occurs on the surface lining of the cervix or endocervical canal, the opening between the uterus and the vagina. It is also called cervical intraepithelial neoplasia (CIN).

Dr. who Dx'd wanted to schedule conization (the removal of a cone-shaped wedge of tissue).
2nd opinion Dr. treated in office with 3 month paps.

There are a number of causes for abnormal pap results. Follow up tests and exams are usually ordered.

Hospice: When Dr. put in order to help with my mother I needed to sign off on understanding that Mom would have someone present 24/7.
In event of caretaker needing to not be present.. the option of temporary nursing care was available. This is also available for caretaker need for 'respite".
The Dr. beyond in-home nursing care, also ordered an aide who came daily (so I could do food shopping, etc).
Hospice also provided to me a list of Hospice volunteers, who donate time to sit with patients so that caretaker can leave the home for an hour or two.

I hope this helps you.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

irish

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Re: My Update
« Reply #4 on: May 09, 2017, 08:24:00 PM »
I was glad to see you back but feel so bad that your life has continued to be such a merry go round. Also sorry to hear about your health issues.

When my hubby was in hospice 3 years ago there was an option where a person could admit the hospice patient into the hospice care facility for a certain length of time. It might be that this would be an option for you. Your mother will not like it but I will tell you that right now it is not about her but about you. You need to see that you take care of yourself and don't feel guilty about it.

It might be that with some paid caregivers through hospice in and around the respite stay that you will make it through this tough situation. Just have to take it one day at a time cause one can never out guess the future.

Your mom is just being your mom and doesn't want to believe it. She also probably isn't as mentally able to figure things out as she used to be so trying to explain everything to her might be a waste of your energy. Probably telling her when things will take place a short time prior might work better. Be less stress on both of you.

I hope all goes well and please keep us updated with your health issues. Will keep you in my prayers. Irish

lighthouse33

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Re: My Update
« Reply #5 on: May 12, 2017, 09:39:53 AM »
Thank you everyone for your supportive posts.  Quietdynamics and Irish, thank you for the information about respite care, in hospice care facilities and caregivers.  I will be sure to check into it.

The colposcopy was beyond painful when he took a biopsy of the cervix.  How happy I was when the nurse called with the results and said it was chronic cervicitis and not cervical cancer!  Started on a one week course of doxycycline.  It is really hitting my body hard.  Hope it does the trick.  Repeat Pap Smear in four months.

While surfing the Internet this morning I found the link below, interesting info about chronic cervicitis and Sjogren’s.  Well, it seems as if Sjogren’s is the gift that keeps on giving. 

Sjögren's syndrome: clinical, cytological, histological and colposcopic aspects in women.

ncbi.nlm.nih.gov/pubmed/3359647

cervical biopsies had evidence of the presence of a chronic cervicitis in 10% of the cases

sun.ac.za/english/faculty/healthsciences/biomedical_sciences/Documents/Anatomy%20and%20Histology/Understanding%20Autoimmune%20Disease.pdf

Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

susanep

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Re: My Update
« Reply #6 on: May 23, 2017, 11:31:04 PM »
I am so glad you do not have cancer.  :)

I also understand the things to an extent what you are going through with your mom, because last year before dad passed away me and my sisters went through many things. Things I will never forget. You and your mom are in my prayers.

susanep
Sjogren's, Lupus, Hypothyroid, Fibro, Sleep Apnea, diabetes, asthma, Polycystic ovaries, and Gerd. Meds - Pilocarpine, Synthroid, Effexor, Cpap, aspirin, Prilosec, Neurontin, Xanax, eye Drops, vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Proventil- Retired Teacher/Disabled