Hi folks, I haven't been on the boards as much lately as I have been busy/ill/who knows!!!!!
I was to the sons to babysit in July for one week and had another sleep study(which I passed I think, haven't been back for the follow up appt yet) and my infusion. I got a really bad cold when up there--the first cold in at least 10 years---why, I don't know but needed antibiotic again. Anyway, also had the grandbaby's baptism and then hubby and I headed out on our 2 1/2 hour trip home in our separate cars.
I knew that we would have BIL and SIL here the end of July so I was so thankful to have time to get rested up and get the house in order. There was a change in plans and they came on Monday evening. They brought their 5th wheel so they slept there and we ate 2 meals a day together. I tried to rest 2 times a day but there was more commotion than usual. We went shopping several times and went to the lake one time for the day. This was another big stressor!!!!
Anyway, they came the 14th July and left August 11th. We really did have a good time, but I was so exhausted from the heat wave and sweating beyond belief this year that I was beyond miserable. I have been going down the tube the past month very slowly and the past 4 days I went downhill fast. You know the drill, sweats, fevers, tendonitis, eye pain and dryness increased, increased nausea, muscle aches, headache, neckache, you name it. I haven't been this bad for several months and I can't say that I missed it.
Anyway, I can now, with certainty, attest to the fact that stress does indeed increase flares. We have our 2 grandkids for 4 nites over this weekend while folks are gone to a meeting. We then have to go back up to the son's house and meet BIL and SIL up there for supper the 22nd and home the 23rd. Hubby has MRI and doc appt on his back the 27th in the cities and I have to go for 3 days(another 2 1/2 hour trip) to sons to stay for infusion and doc appt day after Labor Day. Then the BIL and SIL are coming for 1-2 weeks more before they head on home to Arizona.
I have to admit it has been fun having them, but I don't think I will remember much of the summer as I can't seem to get rested up. I have been weak enough with myasthenia that I called and got an increase in my Prednisone for a month. I know that my sjogrens has kicked in a lot so it is hard to tell what is what.
I told hubby tonight that I thought today was the day to complain about it not being fair---blah,blah,blah, which means nothing because life is life. I did tell him that having him as a husband has made being ill more endurable. He said "thank you". I figure after 44 years of marriage thats as good as it is going to get!!!! I feel like I am writing on a blog. Enough said!!! Keep on smiling, people will wonder what you are up to!!! Irish ;D May the heat waves cease!
Good night Irish, that sounds like a full plate!
We just had a house guest for two weeks, my husband's office party in our back yard, and then a visit from our son and his fiancee from Phoenix to introduce her to us. That was enough for me.
Fortunately I have been on a high dose prednisone taper for an autoimmune headache of some sort. At least they did rule out temporal arteritis. The pred gives me energy and is keeping the headache under control so far. We'll see how things go when I'm off the taper next month. I have to say it has been nice to have more energy for these various visitors. Without the pred, I would have had someone haul me out back and shoot me to put me out of my misery. It sure does help, doesn't it?
Genko
genko, I can sure commiserate with you. You are so right about the help the Prednisone does in the energy department. Actually, I just finished a long taper about one month ago. I had been on 2.5 mgm one day alternating with the 10 mgm and the low dose was dropped. I can't imagine that dropping that small dose would make me flare but who knows.
All I know is that I am not worth a hoot. I had just had my first couple of months of energy in many years and they went down the tube fast. I hope they don't shoot you though. It would be such a loss as we need you here. irish ;D
Irish,
I keep telling you to slow down, but no, you won't listen. ;D Where have I heard that before? Oh yes, my hubby and kids tell me that too. :D
I sure hope you get time to rest real soon and that flare takes a hike.
Genko,
It sounds like you too are doing to much.
We all need to take time for ourselves and relax. (Now all I have to do, is do it! ::))
Hugs, Pooh
IRISH.....hope you are feeling better! Yes....I think their is a strong correlation on stress and flare ups. Try to relax and YOU KNOW that you need to pace yourself. I was told 2 weeks ago that I need a kidney transplant because of Sjogrens....3 days later I KNEW I had a flare up....still am having to deal with it now.
It is hard to enjoy all the activity you want to do when your not up to par. Take care!
Vicky
Irish,
You can take a vacation and come stay with me to help me move. Good Grief Girl!!! Just thinking about the activities you are doing is enough to make me want to faint.
I've had a week of different people, many phone calls and dogs barking all week because of ads to sell certain things. I think I'm in a life long flare. And last night we had the doorbell ring twice at 1:45 a.m. No one there. No one slept the rest of the night. It's scary when this happens. This morning we find our mailbox stuffed with toilet tissue and some terrible oil stuff sprayed all over and in it. Neighbor had the same thing happen and the inside of their car sprayed with the same oily stuff. We have called police and plan to press charges if the culprits are found. You just have to nip this stuff in the bud. This type of vandalism usually escalates into worse destruction.
So now we have the strain of vandalism possibilities to the house we are moving out of. People should know where their children are at that time of the night!!!
Irish, please take a rest and take care of yourself. Those flares are no fun and it sure sounds as if you are doing too much.
Sorry about the rant. I'm really tired.
Billye
Irish,
Whewwwww! I got tired just reading about everything you did over the past month! I know this is easier said than done.....bit PLEASE try to rest sometime in between all of your upcoming appointments and obligations. You need to or your flare will never pass...but then I'm not telling you anything you don't already know.
I think we are all good at telling others what to do and how to take care of themselves but then we don't take out own advice.... ::).
You and your husband are so lucky to have each other....you both seem to always be there for each other but also know when to step away from each other for a bit as well.... :D.
billye, You poor thing!! You have so much to do and then to have to contend with vandals. Life sure ain't fair. Hope they catch the kids and nail them to the detention center. Like that will help--they will come out full fledged criminals. Enough of my ranting. Just take care of yourself girl.
Lynnmarie, Yes, my hubby and I are lucky to have each other. Most of the time we feel that way, but there are days--------you all know what I mean. Tonight we are on the 2nd night of the grandkids being here. I am sweating all the time and I feel like I am having fevers. Also, having more that something weird in my throat--probably another infection. Still feel very, very yukky and hubby is not feeling good either.
Also got a call from the grandkids mom who just left at 4 am this morning. She said that she got a call from her sister Carol and that Jerry is back in the hospital with his spinal fluid leak. She took him to Mayos on Friday and they spent like 12 hours or so waiting to be seen in ER as they were #25. They were told that nothing could be done for Jerry over the weekend and for him to just increase his Oxycontin and go back home. Soooo, they drove home the 3 plus hours and then today she had to take him to their local hospital cause of chest pain. Sooo, their 2 little girls will be coming down to stay with son and wife again. This summer is just not going well. I told hubby that all this stuff going on was going to kill us. But, we can't NOT help when help is needed so we will just plug along the best we can. You should see my dirty kitchen floor.!!!! Thanks all for the nice posts. Hugs to all. Irish ;D
Irish,
I hope when your company comes back a second time, you let them know you need to have a day of rest here and there.
I do believe stress brought my SJS into process when I was diagnosed. Every time I get stressed I immediately have symptoms increase.
Beginning lexepro a few months back has helped control my stress levels and also my SJS, because of that.
I know you would tell every one to control our activity, and we know our limits.
So open wide and swallow the pill of control. (when at all possible)
kimbo
kimbo, My company has been very good about giving me time to rest. They have the 5th wheel and can live out there as much as they want. They do come for 2 meals a day etc. They have been sort of surprised I think to see both hubby and me and this shape. I don't think they understood it from 2000 miles away over the phone.
Also, the sweats that I have had so bad with the heat are turning out to be more than that. I have now figured out that I have an infection in my sinuses and one salivary gland plus who knows what in my lungs. Frequent low grade fevers and drenching sweats have not left even when the weather is cooler. Will see a doc tomorrow and do the culture bit and get medication. I think this is a much deeper infection for reasons I won't go into as it is gross. Probably 10 years worth of infections have left their toll.
It is amazing what a person can get done in spite of feeling crappy. Called my immunologist nurse today to update her and told her a bullet was too good for me the way I feel. I think I shocked her. I am not suicidal at all but I just felt like that was a good description. Have to laugh once in a while. Irish ;D
So sorry you have the infections flaring up again Irish. They really can knock you back. Hopefully someday they will get to the bottom of it and be able to do something. Although with all the resistant bugs out there it can be pretty scary. Is there any physical way they can remove some of this stuff? A small vacuum cleaner?
At the prison last week the men in my group were telling me staff took the liquid soap dispensers out of the bathrooms two months ago (this is at the minimum security unit so they move around more freely), because some of the inmates were taking it to hand wash their shirts. That means you either have to carry a small bar of soap with you everywhere or else go without during the day, or go back to your unit to wash up. Mostly they don't wash very well.
Needless to say, I wash myself like crazy when I come and go from there and use the hand sanitizer to beat the band. I'm turning into a regular Howard Hughes! Reason and caution tell me I shouldn't go in there, but I love those guys too much.
I guess that's the trade-off - you live your life as best you can, working as hard as you can, having company, doing what you need to do - and pay whatever the price is for it. Generally speaking it's worth it to me to do what I do with my life. I can't imagine that isn't true for you too.
Genko