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Life With Lupus

I am still here


#21

My favorite color on earth. My grade 1 teacher gave me the strangest silence and look when she asked the kids their favorite color and got "blue, red, etc" and out of my mouth comes "turquoise". Asians say it is a very spiritual color.


#22


Reet, after an hour or 2 in the sun, I am flat on my back for up to a week.So yes, that could do it.


#23

OMG this is so awesome. I could live in this too. I used to love to camp. The only drawback is no room for a recliner which I sleep in a lot. I hope you can have a wonderful time there.


#24

Thanks Sheila. Why do I forget how badly I feel with a little exposure I wonder? Am I still in denial or just stupid ? I forget how much SLE and SJorgens hurts me. I have had too many doctors tell me that lupus and SS don't do those things. I have yet had a doctor tell me that the pain is from either one of these. They also tell me that the neuropathy is not caused by either one and not to read things on the internet because only he knows about this. Yeah, right!



Sheila W. said:


Reet, after an hour or 2 in the sun, I am flat on my back for up to a week.So yes, that could do it.


#25

What a great cousin to have. I do understand your need for just being alone. I escape into never never land sometimes and then hubby says "you okay?" Yeah, I'm okay but lost in my own world. It causes him to worry and it puts pressure on me to relate better to him. All our sons have that need to be "alone" too but Hubby isn't that way. That is fine...it is a compromise I am willing to make in exchange for so much more. I try to remember my blessings that don't always feel like blessings. Reality is so hard sometimes. I'm glad you have had such good help. When we moved last it was not under my control at all and I was deeply frustrated. But you know it all worked out and in fact was superb. I still don't have things organized in my sewing room but then I haven't been able to do much sewing anyhow. I don't care enough to worry about anything. I can't do it so why worry.

So today, is Ann in her new digs or not? Is she in bed trying to feel better? Sending you healing thoughts. Reet

Ann A. said:

Reet,

I recently experienced some social support that was exactly what I needed. And that includes you taking the time to read and respond. I was very sick and very sad. I have always wanted to have a home - a place of my own in Alabama on the land that is my father's homeplace. I consider it to be my homeplace too, even though I was born 25 miles away in my mother's home town.

Over the years the place of my own has become smaller and smaller. When my Dad died and left all of the income producing land to my stepmother, I was ready to give up that dream completely. Then I was messaging with the cousin who has never left the land and who always calls himself my brother. I asked him if he were really my brother and if he would help me have a small place of my own on the homeplace. It is just a little over 1000 acres most in timber rights leases. I moaned about being my fathet's only child, What he said to me is this,

Whenever you are ready, come home. Me, all if my brothers and sisters and all of your other cousins will make your dream cime true.

In my traditional culture that means more than having a spouse. When I talk to people aboit giving up this house, they talk about it as my home. But this is just a house. My home is in the piney woods of Alabama. They are having a big reunion in August. The hotels are awful and I don't want to stay with relatives. I want my own "she shed."

I will show you pictures of my favorite

SHE SHEDS


#26

Oh no, Ann! I totally understand what you are going thru. This is exactly what I was referring to the one post when I said I am still not organized. I am scolded every time I talk about the disorganized move and not being in control. Norv would get a call that so and so would be able to come that day and move some more stuff and I was supposed to have things packed and ready to go or hurry up and start packing. Well, with a bad back, diseases, and neuropathy from the waist down, I don't exactly hurry anymore. I don't work well in chaos so hence I am doing nothing but reading. SOOO, I hear what you are saying. Why oh why do guys not get it? My very organized fabric, sewing stuff etc has been thrown together and they all laughed that it would give me something to do later on and this included some women. Just typing this sends me into "sailor language" and I know it well. I refrain most times but.....I can swear as well or better then my dad did or my sons do now and 3 of those were sailors. My husband has rearranged the kitchen to his liking because he does do most of the cooking now but OMG there is no rhyme nor reason. Honestly...baking goods in between the dishes???? It reminds me of my MIL's kitchen which was horrid. Good luck, Sweetie! I feel so bad for you. Hugs


#27

I hear ya! I sent my hyper/angry brother home during my move. He was moving the boxes I had packed for the estate sale, stuff there was no room for in my new apartment for, and grouching and yelling and cussing when I tried to stop him and save him some work. It has been 3 months and I have been too sick to unpack everything, but maybe if I didn't use this stuff in 3 months, I don't need it. Loving having less stuff to take care of!! Praying its all over soon for you.


#28

So happy for you getting to the poo!! Hoping my world helps me get there soon too!


#29

Interesting!!!


#30

I have always been afraid to be Rolfed due to my fibro. I have been thrown into a flare just by massage if I'm not careful. Wow Sheila you are up late or is it early? I got up at 4:30 vs 11:30AM a few days ago.


#31

Reet,

It was midnight for me. Then lately since grieving my dear friend I wake up at 4 or so and can't get back to sleep until 6, then upstairs neighbors wake me up at 7. I can't bear massage either due to Fibro. I have heard of a new light touch one that eases tension but doesn't hurt, Wouldn't mind that.



reet said:

I have always been afraid to be Rolfed due to my fibro. I have been thrown into a flare just by massage if I'm not careful. Wow Sheila you are up late or is it early? I got up at 4:30 vs 11:30AM a few days ago.


#32

Sheila, I must have missed a post about you losing a friend. Or probably I have forgotten already. I am so, so sorry that you are going through this grief. Hugs!



Sheila W. said:

Reet,

It was midnight for me. Then lately since grieving my dear friend I wake up at 4 or so and can't get back to sleep until 6, then upstairs neighbors wake me up at 7. I can't bear massage either due to Fibro. I have heard of a new light touch one that eases tension but doesn't hurt, Wouldn't mind that.



reet said:

I have always been afraid to be Rolfed due to my fibro. I have been thrown into a flare just by massage if I'm not careful. Wow Sheila you are up late or is it early? I got up at 4:30 vs 11:30AM a few days ago.


#33

I used to get monthly massages but we haven't been able to afford them anymore. They did help but I directed how much pressure they could use. I didn't go for the Swedish massage as that is too light and I always had very good therapists that listened to my needs. I would give anything for a good massage but for now it isn't in the cards.

Ann A. said:

My Dear Friends,

I am so sorry that fibro does not allow you to enjoy the benefits of massage. I get so much out of them. Reet, one form of support that a single and celibate person like me can miss out on is simple but important human touch. It is so important. Human touch can be relaxing. However, I can get too wound up to let a massage relax me. That is when I see the woman who is both hypno therapist and massage therapist. But since I am probably the most photosensitive person you know, I can empathize with not being able to tolerate something that other people get a lot out of. I really do understand.


#34

Never thought of groupon. I will have to start shopping!


#35

Yes I have also received gift cards for massages. bookstores, etc. It is very nice to get.


#36

I am not laughing! Really, I'm not! This will end. Honest, it will. So, we moved in last November and we have had two toilets replaced due to sewer lines being clogged on our street which clogged our building, They snaked the lines for our apartment and the one above and it ended up the snake busted right through one of our toilets. I can't remember what happened to the other one but they gave us to handicap toilets. Then the clothes washer had the same thing happen and a flood in that area of our apt. The water heater for the kitchen burned out both elements so that meant removing the stove and a cabinet to fix that then a few days later we found water all over the kitchen. The guy jarred something lose so the whole procedure over again to correct that. I forgot, before all that we had water all over the kitchen due to the dishwasher which had to be replaced. We still have raccoons in our ceiling because they never make noise when maintenance is here. This is typical for our life so we take it in stride most of the time. BUT, we really like our apt. It is almost 1700 sq ft and on the golf course. The price is good here too. Maintenance has been prompt and very courteous and friendly.

I told you all this to make you laugh at how out of control my life gets at times and yours will right itself too. It will get better as you well know. In a couple of months hopefully you will laugh at all this, Hang in there, Ann.


#37

Oh my goodness, the frustration! Wish I was there to hook it up right for you. Good for you for refusing to panic. I really pay physically when I get upset. I have to really control myself so I won't get too sick to function. Was there any damage other than dirty clothes? Maybe time to meet a neighbor or take clothes to a friend's/relative's and ask them if you can use their washer since yours just flooded your place.


#38

WHAT? Make sure they don't charge you for two installations! Sorting 80 years of my parents stuff was so draining. Then my brother wanted me to sort the storage unit as well and I told him we'd have to do it in the summer because I couldn't bear going through 1 more box right then. Glad that you'll be able to buy a number of new pants. I am plus size, and the stores with plus size clothes are ridiculously expensive and they think large ladies only want black or dark gray pants, so for years I only had 2 or 3 pants. Now that I've lost 40 pounds I'm glad I was too sick to sort out my old clothes because I have some colored summery pants. They are so hard to find in my size and the fabrics I need. (Allergies) That will take you a lot of energy today to go to the old house and work, AND go shopping. So glad you have the help of Mr. B.


#39

Ann I am exhausted reading what you do every day. I have spent !most of today sleeping again. Since I was out in cars this past week which means sun, I am paying again. My joints are killing me, my ribs hurt in the back, I am wheezing from any exertion at all, such as walking, and I can't get comfortable at all. Is this a reaction others have from sun? I am so tired of not going anywhere because I spend so long getting over being outside. We are off to IL again tomorrow to see my internist on Tuesday. I hope he has some answers. Of course this trip will make me feel awful again.


#40

Good to read you are winding down and are getting your epidural. The government rules the pain docs have to follow are difficult for the!m to work with now. I hope you enjoy the end of your week.