Author Topic: How I have been this year!  (Read 289 times)

susanep

  • Hero Member
  • *****
  • Posts: 3555
  • Each Day Is A Miracle !
How I have been this year!
« on: December 03, 2017, 03:51:46 AM »
Hello Everyone,

Some of my time not being here is due to computer troubles. Then I read some, and sometimes don't know what to write.

I was also this summer diagnosed now with Rhuematoid Arthritis as well, as the Sjogren's, Lupus, Fibromyalgia, and I am diabetic type 2.

Last week I suffered greatly with severe back spasms on one side. I have had to take prednisone for that. It did help, but I had to take some pain meds until it was relieved. That actually started severely Thanksgiving night, and I was so grateful I got through a nice dinner with my son, daughter in law, and youngest sister and her husband. It was a good day until we got back home. I felt so blessed though.

My Rhuematologist said to keep doing movement for my range of motion.

I an having more joint pain, and lower back pain in my spine.

I am taking the usual meds plus the gabapentin I take is 2400 per day, plus lately making sure I take my methocarbamol to help keep spasms at bay.

The gabapentin helps me.

He said my lupus showed worse in my last blood work, and the Rhuematoid Arthritis is another over lap.

I feel like I have so much going against me, but I am not giving up. (one day though I had a melt down and wanted to come here for encouragement, but then some computer trouble).

I feel frustrated due to me and my precious hubby planned ahead of time for Christmas to order some things for family, mainly my son and his wife to keep from having to worry about making it through stores which is hard for me. Then my son and daughter in law send me a email letting me know that she would like some more pot holders like I made her last year. They were pretty and bigger than what you buy, but I am just trying to finish a full size quilt for my dear brother in law that his grandma had made him when he was little. It was in horrible shape, but he ask if I could do anything with it. Well I kept her top as the same, and cleaned it good, then put in a new batting in the middle and a same color but new backing, and just now trying to quilt this on my regular size machine which isn't easy for me. They have helped us out a lot with things.

Then also my son ask me to sew him a chefs grilling mitt, because he has big hands and those in the store don't fit him good.

I don't mind a bit, but I feel now I have to do all this before Christmas now, and it stressed me out, and I am not good these days with things to sew by a certain time.

When I tell my son that I can't do what I use to, he doesn't understand. We were always very close, but he is in denial about how I am now.

Me and hubby went early saturday morning to get a few things for me to have to attempt to sew these by Christmas, then after we got home 3 hours later, and both of us so tired, but happy we got through it.
My son then calls to ask us to come over at 6 that evening, and that he would take us out to dinner afterward, and then to look over some things when we get back to his house. I first son ok, then me and hubby agreed we were so tired and needed to rest the rest of the evening, so I called my son back to tell him that and could we make it today Sunday evening. He said, well he had something to do then, so I will be going over there this week one day.

My husband was cut off his disability medical insurance after they sent papers out to him in January for a re determination. Didn't ask anything really about his health, and he had already had his diagnosis of disability years ago now, but they cut him off only saying he didn't fall in any of the new categories. He was on oxygen every day too, so he has been doing without.

We both feel alone because we know what we are going through, but some don't, mainly my son and I am sure my daughter in law. My son's father isn't close to him like a father should be, so My son Michael depends more on me, but he can't understand my limitations. That is so hard when I love him so much.

Sorry about getting all this out now, but felt I needed too.

I always keep all of you in my prayers, because I know what you go through in the scheme of these disorders.

Hugs to all,
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Prilosec,, Xanax, Restasis, Systane, Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventil.

susanep

  • Hero Member
  • *****
  • Posts: 3555
  • Each Day Is A Miracle !
Re: How I have been this year!
« Reply #1 on: December 03, 2017, 04:00:10 AM »
JUst to add to my above post. Tennesse is one state that didn't extend their medicaid so that had something to do with my hubby getting cut off. He has been going to a local clinic on a sliding scale, and filled out papers to different drug companies to get approval for some of his meds he was taking. He is a severe diabetic. We are thankful for that.

I am so happy about Christmas this year though in we have a 4 foot tree with got to put on a table. I love the songs, etc. those are the most important to me this year. Just the simple things and family.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Prilosec,, Xanax, Restasis, Systane, Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventil.

Carolina

  • Hero Member
  • *****
  • Posts: 5281
  • —if it ain't one thing, it's another." Roseanne R.
Re: How I have been this year!
« Reply #2 on: December 03, 2017, 07:14:23 AM »
Dearest susanep,

My heart goes out to you and your husband.  How amazing it is to me that, through all you are dealing with, you are thinking of others and making gifts, mending an heirloom quilt, and generally spreading joy to others.

You spoke of your son's denial about how severely disabled you are now.  I think this is very common, especially for our children.  After all, you are his mother, and he still needs to see you as strong and able to care for him.

I think we are frightened (and then angry) when those who have been strong for us, show signs of weakness.   That weakness threatens our security. 

I know, too, the pain of muscle spasms.  I'm going today to try to exercise in the warm pool, to help my muscles loosen and perhaps get a bit stronger.  I have a referral for physical therapy, too, which I need to begin soon.

Thank you so much for your sharing, susenep.  There are so many of us who are coping with multiple 'conditions'.  I feel so much less 'alone' when I read your post.  It causes a deep hurt for me when my children don't understand and I can feel judgment and rejection.   I realize, however, that their behavior is only human, and that perhaps one day they will experience similar judgment from their own children and remember to be kind and patient with their children, as I try to be with them.   We are patient with our children when they are young, and now we must be patient with them as adults.

I cannot spend an hour shopping, let alone three.  But your post makes me realize that perhaps just a visit to one of the larger malls, with my walker, during this holiday season, would help me 'feel the spirit of the season'.  I do my shopping on line (my grandchildren are all getting gift cards for Amazon...nicely presented in pop-up-card boxes).   I wish I could make anything 'by hand', but I've never been blessed with any talents in that direction.

Today I am grateful that I am not in a flare, that some of my pain has lifted, and that it is sunny outside and that I have four large floor-to-ceiling windows in my bedroom, looking out to the deck and the woods beyond.

And that my husband brought me coffee and breakfast in bed, and that he put away all of the clothes I put on hangers from the laundry room! 

I am even optimistic that perhaps, after this very stressful year, I will have a chance to get stronger.  I had my hips x-rayed on Friday, to be sure that the pain in my hips from my bad fall (compression stress fracture to my lumbar spine, which has healed) in October was only neuro-muscular and not damage to my hip joints. 

My hips are fine (well, bone-on-bone from arthritic deterioration, of course)!  So now I can go forward with the physical therapy without worry that my hips are damaged. 

Most of all we need to be patient and kind with ourselves, I think. 

Thanks again for your wonderful post.

Hugs, Elaine
« Last Edit: December 04, 2017, 05:08:54 AM by Carolina »
Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-Amitriptyline-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

susanep

  • Hero Member
  • *****
  • Posts: 3555
  • Each Day Is A Miracle !
Re: How I have been this year!
« Reply #3 on: December 03, 2017, 11:16:14 AM »
Elaine,
I am encouraged by reading what you have been going through too. It isn't easy I know. Yes, it does take the special mom love to be patient. I guess they too have to watch and endure the loss of their loved ones too, and why would they want to think about that. Reflecting, I know that I felt that way after my parents passed away.

I have you in my thoughts and prayers for you to continue to improve, and for you to get what all that you need to feel better, and continue to enjoy serenity looking outside your beautiful windows.

Hugs,
susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Prilosec,, Xanax, Restasis, Systane, Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventil.

lorigacc

  • Jr. Member
  • **
  • Posts: 61
Re: How I have been this year!
« Reply #4 on: December 04, 2017, 06:01:36 AM »
Susanep-
  I am always encouraged by the strong women on this board, you are definitely one of them.  I do understand what you are going thru. Had a very close family member the other day tell me my Sjogrens problems were just "little things". Feeling like I want to print out one of those " what you need to know about Sjogrens syndrome" articles and start handing them out.  Most of us only wish our problems were "just dry eyes and mouth" as others believe. 
   As Elaine stated, we feel much less alone, because we are able to understand and encourage each other.  Thank you for sharing, it does help us all.  I pray both you and your husband feel better.

Lorigacc
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

lorigacc

  • Jr. Member
  • **
  • Posts: 61
Re: How I have been this year!
« Reply #5 on: December 04, 2017, 06:05:40 AM »
think i need to verify the dry mouth and dry eye comment....none of us would ever wish for those afflictions, they are awful to live with and a challenge for us that do.  sorry if i offended anyone....
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 12755
Re: How I have been this year!
« Reply #6 on: December 04, 2017, 05:43:35 PM »
Susan, Way back in another lifetime with little diagnosis and so many symptoms I remember being in awe of all you endured and how you kept up the good fight. You are still doing that and the angels are watching over you and your hubby for the gracious, unselfish life you have led all these years.

You were sicker than me this year but you got more done than I did. You are amazing. Our kids never get our health issues cause our mortality frightens them and they don't think of their mortality yet.

I know you will keep on doing what you can for others and It does seem that your doctor is doing what he can for you. As with all this autoimmune stuff it very well could settle down and I will pray that it does so that you and your hubby will have a great holiday season. Hugs to you and Merry Christmas Irish

susanep

  • Hero Member
  • *****
  • Posts: 3555
  • Each Day Is A Miracle !
Re: How I have been this year!
« Reply #7 on: December 11, 2017, 12:17:25 AM »
Merry Christmas to all of you.

Thanks for all the encouraging words.

Irish I almost have that quilt restored for my brother in law, and will hope I can sew those things for my son and daughter in law.

I love you all.
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Prilosec,, Xanax, Restasis, Systane, Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventil.

Nymph

  • Hero Member
  • *****
  • Posts: 833
Re: How I have been this year!
« Reply #8 on: December 13, 2017, 04:24:04 PM »
Susan, I am sorry that you are going through so much right now. That is really hard about your husband being cut off from disability. It sounds like everyone is leaning on you. As my own parents grow older, I am terrified that I won't be able to lean on them someday. However, I am trying to shift into the daughter on whom they can lean. That's hard, too, single, working, with a chronic illness. But they deserve it. If I didn't make that change, I would regret it. Let your kids know that you need to lean on them, too. They'll be stronger for it.

Hugs!
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot