What a year!!!

[irish]

I am almost too pooped to even post this note. My fatigue is so bad and has been since I got off the solumedrol IVs monthly in Sept. I was supposed to have 6 more months of the pulse steroids as they are called but I have one after another health issue and just haven't felt well enough to restart them. Trouble with colon again---this is getting to be a long term problem lately. C. Diff and ova and parasites are negative but seems like there is more going on than I can explain.

Mucus is terrible and so thick and I am gaging a lot plus sores in my nose and I think in my throat again. Also having chest pain that has been checked out in the past year cause it will occur after IVIG and is not heart as far as they can tell. Also shortness of breath at times and increase in lung secretions. Unusual for me.  Soo, called immunologist and am on Doxycycline again and thenweakness kept getting worse and had to call neuro and she upped my dose of prednisone to 15 mgm twice a day for 2 weeks and then start taper dose ---again. I just can't get tapered off the darn stuff.

Soo, called immunologist office and talked with nurse and my immunologist called me last nite and talked for about 20 min. I am seeing my internist tomorrow and he suggested things to draw blood for. It hit me tonight that I have not had a double  stranded DNA blood work for lupus for a long time. My immunologist has been checking me every so often cause he thinks I act like a lupus.

Sooo, I am complaining cause I have the "dwindles" as I call it where everything is going down the tube. I had lost some hair and it is growing back but my hair even acts sick. Immunologist told me to call and they would work me in if things don't improve.

Wow, this year has been one thing after another. Fun is sitting in the recliner and taking a nap. Yippee, are we having fun yet. No tree yet, no cards getting done, no presents bought yet, kitchen isn't done with remodeling yet after 4 months and house is still not all unpacked or settled. Funny what a person can put up with when they feel crappy. Thanks for listening. I bet I forgot to complain about something!!!! Irish

[Joe S.]

(((Hugs))) I know that you are committed to using the medical system to help you. I suggest that you call your family members and ask for help with the cards and the tree. Jan put up a small tree this week. Tonight she has been working or letters and cards. Our daughter Sarah made cookies and Lefsa.

I love my recliner. I drift off often. Sipping water so I can blow my nose helps with the thick mucus. The Cistanche helps to bring my energy up. Jan still has to do almost everything for me. I use a shopping cart as a walker if I can not find a scooter. I no longer can drive. I am trying to recover so I can drive again.

This disease is hard. Do not make it harder by not asking for and accepting help. Your input to this forum has meant so much to me and others. Please seek help.

[Carolina]

Dear Irish and Joe,

Here we are heard (read), understood, accepted and loved.  And support each other. 

My year was also difficult and I continue to pray for acceptance, so that I do not ceaselessly struggle against my own life.  It is what it is, and grief and struggle only make it more painful.  Wish it were as easy as writing the words to actually carry out.

My happiest news in my inbox this morning is that the warm salt water pools at my health club will reopen next Wednesday, after 3 weeks of draining and renovation.  So I can add water therapy to my efforts to regain some strength.

My year started with new leg braces, and I was over-joyed at the support they gave me for walking.  BUT then I developed Myoclonic Seizures and could not longer walk without support for fear of falling, and had to stop driving.

I developed severe sciatica in July, which required back surgery in October.  So my strength was drained away.  But it worked! My first miracle of the year.

My COPD asthma has worsened, as well.  And I went through Gabapentin withdrawal in my effort to stop the Myoclonic Seizures.  So here I am in December, still walking with assistance and not driving.

BUT, as ever I am optimistic.  Interesting that I wake up feeling really awful (general body pain) but improve during the day.  So I have that to motivate me to get up and get going.
Well at least to wake up and take my morning meds.

My husband has done all of the Christmas decorating this year, inside and out.  He also brings me breakfast in bed every morning.  That is something to be grateful for, indeed.

Yesterday I attended the holiday luncheon of one of my book groups, the first since Spring.
And hope to attend another group luncheon next week.  Small victories, but rewarding.

I hope this finds everyone caring and sharing this holiday season.......and remember to care for yourself with loving kindness.

Hugs,  Elaine

[warmwaters]

You all inspire me to deal with the hand we're dealt.  Some days it's hard to accept what we've got, but there it is.

Hang in there Irish, maybe there's help on the way!

May everyone have a pleasant holiday.

[quietdynamics]

 
We have also had the medical year of heck. Both myself and DH enshrouded under a dark cloud. We are just now able to breath.

Irish you used to push yourself for your DH .. and now being alone you can allow yourself to be sick for yourself. (Sometimes when my DH would be away I am different and less get done, I do not have push and pretend some things are alright so he would not be concerned. Then other times I would have some energy.. toss of the dice.)

Like you I am of an independent nature. But, reality is that our our bodies are 'fragile'. So we need either to change things and make them as streamline and simple as possible or hold on to complex and ask for help. *Three of us here now (with daughter and our tree is not up.. not a good year..lol)

I am hoping this year with you feeling so badly you are going to family for holiday festivities, even for a short time, with plenty of leftovers to carry over for a few meals. I would imagine even daily meals for you at this time are a chore. For myself it gets that way, especially when I am alone.

Yes our hair looks flat and lackluster when we do not feel well. Mousse.

I am hoping the internist has some guidance and tests
Are you going to pulmologists?
Here is link to 26 Sjogren's Pulmonary Clinics (perhaps one is near you) https://sjogrensworld.org/index.php?topic=26653.0
*You know what questions to ask.. if you vett one.

Hoping things turn around for you.
Think about having a sit-down with family after the New Year to help get home the way you want.. you deserve help. It is your turn.

[cccourt1942]

I do NOT wish for anyone to think I am making a political statement.  I'm not.  But I want to say, flat hair, no make up, Hillary Clinton looks more lovely and relaxed  in snapshots in the woods than on the stage all trussed up.  She is an attractive woman, either way, but wow I am amazed at those candid shots of her.  Message?  Relax, kick back, and stay clean.  Your spirit will shine thru.  If we can see your spirit from these messages, I KNOW your loved ones can see it in real person.

Happy holiday season,
c3

[irish]

Sorry I had such a rapid post. My computer is acting up and it erases my post. The one above was the 6th one I did and I had had it. I don't know if it is this section that is acting up or if I have a virus. Time will tell.

Saw NP today and blood work, etc xrays, etc and as usual nothing world shattering but so many symptoms it was hard explaining to her. She was so patient. The one thing I learned is my TSH was .27 ad finally I got my dose cut which might help my hair.

I will talk with immunologist on Monday and see what he can come up with. My 5 autoimmune diseases are getting worse and hopefully everything will point to what is going on.

I guess as usual things go in in cycles cause most of us on this site have had a hard year with their diseases and issues. So much stress in the world doesn't help our bodies or our souls. I will quit before this disappears again. Have a good week end and thanks so much for putting up with me and for sharing with al of us. God Bless. Irish

[aussie mum]

Sorry to see that so many of our forum's longest members have had difficult years. Thank you all for your support and words of wisdom when we need it.
I truly hope your doctors find a way to improve your symptoms and lighten your loads.

Sending many positive vibes from OZ.

Aussie Mum x

[Nymph]

Dear Irish,

I am so sorry that you are feeling so unwell. I have never yet been to the point you are at but can imagine from my worst days what it must be like.

I have been so overwhelmed with work and fatigue... I do my dishes twice a week - at the beginning and end of the weekend! My Christmas decorations are a single poinsetta, but that alone does brighten up the place. The holidays are hard, and the darkness of the solstice doesn't help. We can ask for help. My sweet parents are always willing to help. I feel ridiculous asking. They're old people! I'm young! But we all need help sometimes. Just putting on some music and lighting a candle (low-emmision soy candle, maybe, for your lungs) may be all the "fun" you need right now! That's about where my fun maxes out lately, at least until I have several days of winter break to recover.

Hugs and sympathy,

Nicole 

[Liz D.]

Dear irish,

Sorry to hear of your difficulties and certainly hope that 2017 will be a better year for you. But I want to take this opportunity to say that we appreciate that no matter what you are dealing with, you are always here for us helping with your wisdom and suggestions.  You are the biggest aid to us!

Over the years, you have always been the one that gives the best counsel.  There are many contributors to this sight which are fantastic and I love them but when I see you posted a comment, I go to read it right away because you are so trustworthy! 

You have helped me personally more than you know and I thank you for that and pray for the best for you!

Liz D.

[Carebear]

Dear Irish and all other friends,

It is hard to hear that you are so unwell this year, but thankfully we have each other to lean on for support here. I do wish for all of us to have a break in this illness cycle.  It can really get to be too much can't it?

What I have learned from each of you in the past several years is that I must hang on to as much hope and gratitude that I possibly can, especially when things go sideways.  Somehow there is always light at the end of tunnel, albeit the length of the tunnel is unknown. 

So here's a toast to you Irish, and everyone else who is a part of this unique group.  And here's to better health.

[irish]

carebear, I love your description as health issues going sideways. That is so true. We don't go back cause we wouldn't get anyplace. We go sideways and then slowly forge ahead. So many detours and we never end up in the same place. We lose some things and gain some others. Life isn't always very much fun, but we certainly do get exposed to a wide range of weird health issues. THat is cause Sjoggies are special!!!

Thanks to all the great people on this side who hang around and as a united group keep each other propped up and enduring. Irish

[susanep]

Irish,

I too look forward to the comments from you, but I know to you and everyone that this year has been hard for me with few comments compared to the past.

My dad passing away August 1st so now both parents not here for this holiday.

It's been a hard year for me anyway due to mostly sitting in my living room chair. I haven't even sewed as much this year, and not much at all the past few months.

I am on my 3rd strep throat treatment for this year. Never had it all my life. I don't know why.

I just feel weaker this year with a steady bad feeling with my kidneys, but have learned that my diabetes has been out of control so that has affected that. I was going back on Metformin, but it made my intestines hurt so bad I had to stop.
They switched me to Glyburide, and I am not sure about it. I am just cutting out carbs wherever I can.

My little table top Christmas Tree finally made its way on the table by us, and then the lights did not come on. Somehow I think they are all burnt out. Maybe they are mocking me. lol...

Me and hubby walked from one side of walmart to the other a couple of weeks ago, and thought we really did good. Well for a couple of weeks after, we were recuperating.

I hope for all of us to have a better 2017.

Hugs,
susanep

[irish]

Susan, Sorry to hear that you are still feeling so down and out. It is hard losing a relative and holidays seem to be less fun without the family member. This is the third Christmas without my hubby. I miss him but would not wish him back cause he had been so ill. Not only that, but I could not take care of him if he were here. I am getting so taking care of me is getting harder,.

Hope going back on Metformin helps you. It is such a great drug. I have been on it since 2009 and it does upset my stomach and causes misery but I just bite the bullet as it helps the blood sugars so much. The problem I have is keeping the amount of food small. We Americans all think we are starving to death and have to eat so much. It is so much better to eat smaller amounts and sort of graze. Peanut butter and crackers is a good snack and I am trying to eat more eggs as I need more vitamins and protein.

Hope you and hubby have a good Christmas and that you health stabilizes. Drink plenty of fluids too cause that helps the kidneys and it helps the blood sugars. Irish

[susanep]

Yes irish, I couldn't have done much for dad either. They put me now on Gyburide, and I trying to work harder on my diabetes. I am actually  now wondering if where it has been so out of control if that has caused me a lot of extra tiredness.

susanep