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jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 5/31/2009 3:08 PM (GMT -7)   
I love to garden, I love flowers and digging in the dirt. If I thought I could handle it I would have a huge garden with all sorts of fruits and veggies, luckily I have family that have gardens but it's not the same.

Well I got out in the yard today and over did it as usual. It doesn't take much especially with the heat. Luckily the sun doesn't hit most of the yard (or the part of the yard I was in) because of all the trees. I was picking weeds and pruning and I noticed this particular weed and thought it could possibly be poison ivy so came in to take a shower and now I am wiped out! I am weak, my head hurts.................. I need pampering! Maybe I will spring for a pedicure this week!!!

I am so sick of this disease and the limitations that comes along with it. I see so many women my age and older that can do so much more than I can and it is so frustrating. I have friends that love to sun bathe (which I have loved all my life), can enjoy the lake or beach, running marathons, etc. My kids are getting older and this should be the time in my life where me and hubby could take great vacations, etc OH now I'm just whining so I will stop here.

I guess I am having a down day and I know each of you can relate to how I am feeling. Thanks for being there and listening :-)
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


alim0nkey
Regular Member


Date Joined Feb 2009
Total Posts : 58
   Posted 5/31/2009 3:28 PM (GMT -7)   
Sorry you're not feeling so good - it's a horrible illness and it robs you of your life.

I had a similar experience today. It's getting rather warm and summery here in the UK (makes a change smilewinkgrin ) and as I've put on loads of weight I didn't have any nice cool clothes for work so I asked my partner to take me into town (I'm not up for going alone, I would have thought nothing of it last year). We only went to about 3 shops and I did find some nice clothes but when I got home I was so exhausted I had to have a lie down for a couple of hours. After a simple one hour shopping trip. I'm annoyed with myself for being so weak.

Just wanted you to know you're not alone. It sucks big time, but we just have to look after ourselves.

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 5/31/2009 4:27 PM (GMT -7)   
I sure know the feeling. I get extremely jealous of my friends. I was always told that life starts in your 30's... well not for me.

While my friends are out sitting at the lake, going to wine tastings, going to parties, I am usually at home either dealing with med side effects or I'm so weak because I used all my energy working 8 hours.

I always feel guilty because I used to be an extremely fanatic neat freak. Now I have to settle with good enough around here in my house. We are going to hire someone to clean but I feel so bad paying money for that.

I know my husband struggles accepting my limitations too and I know he gets frustrated as well. I just feel so bad that I have effected his life so much too with my disease as he doesn't get out to enjoy it either because of me (even though I have told him to).

Debbie Downer
Regular Member


Date Joined May 2009
Total Posts : 62
   Posted 5/31/2009 4:43 PM (GMT -7)   
I understand. I love to work in the garden. I love landscaping, beautiful flowers, etc. I do what I can, but an hour out there doing that work feels like 6 hours. My heart is always beating really fast when I come back in, headache, flushed, really tired. I'm only 29, so Dbab, I relate to what you said about the life starting in your 30s. Not for me either. I used to work in landscaping for years at my college and I sunbathed, tanning beds, drank a lot, partied late, and now I can barely make it through dishes. It's humbling, especially with no diagnosis of anything yet. Plus, no diagnosis means no disease to my husband. He thinks I'm lazy. He tries to be nice, but I know he wishes I were more outgoing and energetic and maintained the home better. I can barely keep up with my two boys.

I'm sorry you are feeling discouraged.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/4/2009 10:45 AM (GMT -7)   
Thanks gals! I knew I wasn't the only one feeling like this. It sucks and there's not much we can do about it. I work 4 days a week to help provide for my family but I can't help but think if I didn't have to work I would be able to do these extra things I love so much! But I've said I will work just as long as I can.

Life starts in your 30's??? Didn't happen for me either. I was 31 when my problems started in 2002!

((((( group hug )))))
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 6/5/2009 7:14 AM (GMT -7)   
(((((Stacie)))))

Yes, it sucks sometimes. And from one avid gardener to another, I have to tell you that I understand your frustrations. It's hard for me to bend over to pull weeds or deadhead my flowers. I still get out in the garden, but on a more limited basis. I planted an herb garden in an old antique wheelbarrow that was in the back of the house when we bought it. Next to it I planted two tomato plants in a large pot. I have enough basil, parley, cilantro, and rosemary that I've been giving it away a few times a week. And I love cooking with it. It's no trouble at all. Weeds don't grow in it, I don't have to bend over, and a little water is all it needs. I staked the tomato plants this morning and saw two little tomatoes growing. Sometimes just ten or fifteen minutes our in the yard doing something gives me pleasure. I might get a little stool and sit an pull weeds for 15 minutes. Six years ago I spent 8 hours a day for three months landscaping an acre of shade. It was a paradise as the years went on and rather than mourn the fact that I can no longer do that, I get to enjoy the memories.

I realize that the elderly go through what we're dealing with every day.

I think that once you deal with your grief over this, you can learn to enjoy all the things you used to do, but in smaller doses.

Take care of yourself Stacie. You can do this.

(((((Hugs))))

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 6/30/2009 6:33 AM (GMT -7)   
Hi! Pat and everyone,
The group hug was nice, and the clue is doing everything in smaller amounts. Life with lupus is all about balance. What makes it tougher, is the need so many of us have, to work for a paycheck. We expend so much of our energy working, we end up depleted and sicker, just working! I am in bed at 6pm and drag out just as tired at 6am. I am mad today because I am on vacation and can barely hold my wrists on the keyboard and hold myself upright at my desk. It's nice to chat with friends who know just what I mean!
suetoo 
What I miss most...... being out in the sunlight and feeling warm from the outside in.
And did someone mention CHOCOLATE? A Miracle Whip cake is just the answer! A rich and gooey chocolate cake recipe that takes 5 minutes to mix in one bowl, and 20 minutes to bake, and is soooooo comforting when you are desperate for a treat.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/30/2009 8:46 AM (GMT -7)   
(((Stacie))) for me it was bug bites. But maybe I was really mostly sick from the sun. This spring/summr has been bad for colds here down south, though the heat index has been as high as 110 F. Baby aspirin helps my headaches from sun sometimes, and drinking lotsof water. Maybe it thinsthe poison out, I don't know. I love gardening too. I'm ready to get one of those safari broadbrimmed hats with the full-length mosquito net all around, but my luck I'd trip on it and break my neck! I don't knowif a beach umbrella would be helpful (if there is no wind). I use it on the rare days I can to try toblock some of the sun. I got this full length black beach coverup dress but my son says I look like a nun or something and it shrunk in the wash.

I hope you feel better and don't forget to always bring your own tools to your manicure/pedicure, not just for fungus, but for HEP C. Considered a bad risk factor. I don't get them anymore, but just because I did, I'm at risk. I even wash my pierced earrings in alcohol when I buy them if there is anyway someone could have put them on.

There's my paranoia for the day. ;) Better safe than sorry.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/30/2009 6:34 PM (GMT -7)   
Thank you Pat, Sue and Marji,

Some things have changed since I last posted, I am now working 5 days a week and increased hours from 32 to 35. I was so worried about going back to 40 hours, so I think this will work out well. This way it will allow my body to adjust to the increase. My rheumy also increased my MTX from 3 to 5 tabs, I only took 4 Sunday night and when I came home from work yesterday I crashed! I am just so tired, my blood work is off and my SED is elevated.

Pat, your herb gardens sound lovely. I want to go some myself. I like the wheel barrel idea too. I think I could handle that.

Marji, thank you for the tip on taking our own tools when getting a pedicure. Something weird has happened to me twice in the last month or so. I always get those little hangnails and they keep getting infected. The first time it happened I had no idea what was going on and it turned into a full blown infection with swelling and pus. The last one (just a couple of days ago) I was able to stop it in it's tracks by putting Neosporin and a bandaid on it. Does anyone else have this problem?

Sue, please share the chocolate recipe!!! sounds very yummy smilewinkgrin

I am going to FL in a couple of weeks to see my son, I can't wait! I want to go to the beach so my daughter can have some fun and I really want to get some sun! I wonder if getting just a little on my arms and legs will throw me into a flare? What do you think? Luckily this particular beach we're going to has a pavilion, I thought I could just expose my legs while enjoying the shade smilewinkgrin Not sure if it will work or not!

Thanks for being for being here!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/1/2009 6:41 AM (GMT -7)   
Good morning everyone,
It is another damp rainy day in NY, we are right between Lake Erie and Ontario and get all the worst weather from both. Please don't be tempted by the sun, even little bits make me sick. I have brown patches on my arms from just being in the car driving into the sun and the itch that is almost instantaneous drives me OUT of my skin. I compromise by always sitting in the shade with dark sunglasses, long sleeves and long cotton pants, and stick my lounge chair half in a sun spot with my legs and feet covered by a towel. Sunscreen makes me itch worse and I literally can not stand to wear it. I have tried every kind. I go swimming with a long sleeve shirt on, and watch a clock. I love sitting in the surf, and pull a lounge chair into the waves. On Amelia Island I "swam" with dolphins and had to force myself back to the shade. I LOVE the beach. And chocolate cake tongue   The Miracle Whip recipe is as follows: (a mixer is great, a bowl with whisk just fine, too). Mix wet ingredients together then mix dry together, then combine. Pour into sprayed cake pan, rectangle or two round. Don't overbake. 350* 15-20 minutes. Test with toothpick.
2 C. flour                                                          1 C. Miracle Whip salad dressing
1 C. sugar                                                        1 C. water
4 tablespoons cocoa powder                           1 tsp. vanilla
2 tsp. baking soda
pinch of salt (optional)
 
Frosting of your choice, I make buttercream with butter, vanilla, conf. sugar and milk to spreading consistancy. Or just dust with sugar, make a glaze, or spoon pie filling, and cool whip, over just before serving. It also cuts up nicely to put in a glass bowl, with layers of cake alternating with frosting, to take to a picnic at the last minute. The cake, red and blue berries, layered with Cool Whip  makes a great 4th of July cake. Enjoy.
 
I get infected hangnails alot, too. I have had a few scary bouts of localized infection and my nails split off in layers and have fault lines in them, that crack easily to the quick. I know salons are health dept. regulated and are trained in good infection control measures, but compliance is another thing. Notice if when something is dropped on the floor, it is put aside to be cleaned and another comb or scissors gotten out. The 5 second rule DOES NOT APPLY! smhair Find a salon you trust, and that has a clean bathroom and storage area, (ask to peek in), share your worry about your infections and ask them to resanitize everything before they start. A bit of an extra tip is worth it to avoid an antibiotic course. I am doing gramma daycare today and just tucked my 8 month old grandaughter in for a nap, oh boy. I am heading for the coffee pot,
hugs to all 
suetoo 
 

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/1/2009 8:24 AM (GMT -7)   
Stacie,

I'm with Sue - don't get any sun at all if you can help it. Use sunblock and stay in the shade. The little bit of pleasure you get from putting your legs out in the sun will be ruined by the flare it can put you in. Trade that pleasure for the joy of being with your kids. I know how that feels, and I'm envious!

Have a wonderful trip! And don't forget to wear a big, pretty hat!

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/1/2009 8:37 PM (GMT -7)   
My hep won't let me get manicures and pedicures, not like he can stop me. Yes I get the infections, and ingrown nail corners and can tell youwhat I try to do. I clear it up best I can, antifungal/antibiotic, then shape the nails so that the corners can grow out of the skin. My skin is tough due to endo and so I have to clip out the corners of the toes and get the nail out. I was told straight across is best , then oval. I think it depends on your nails. Just try to focus on growing the nails out I use an herbal nail strengthener constantly under polish and it has helped.

Please do consider bringing your own tools because the health dept is easily and often prone to overlooking things if it is to their advantage, if you know what I mean. Hep c is extremely contagious blood borne infection, muchmore so than AIDs. It takes but a small amount of blood to transmit, then once you get it you have to worry about giving it to your kids, been there--done that. They suspect I got exposed when a boyfriend unbeknownst to me borrowed a razor or toothbrush--he told me after that he borrowed both. NNNIIICCCEE....

The sanitizers don't kill everything, they have to be left in for a length of time, and you need to make sure the solution is changed. My mom also got a horrible nail fungus from a salon.

I had a old friend years ago I ran into that had contracted AIDs and was running a body piercing business with her boyfriend, who had AIDS and multiple hepatitises. They seemed like nice clean people and the salon was spotless. I broke off my friendship. When I questioned her, she said "why should I go alone?" and "my customers probably have it already". She got ill shortly after and had to close the shop. She is dead now and I think her hubbie is too. I wonder how many customers she would have had if they had known. So, I don't trust anyone.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/1/2009 8:43 PM (GMT -7)   
Carol,
My son told me that no cake with Mayo in it could ever taste good despite his love of Mayo on sandwiches, he loves the stuff. I tried to explain its just milk eggs and oil, what you normally put in cake.

I will have to make your cake and not tell him and get him to sign a piece of paper saying how delicious it is, then tell him. I ran out of butter once and made grilled cheese with mayo on the outside instead of butter and it was delicious, he did prefer that to butter. But we used it in waffles and he didn't like it, but I did, they were great.

Thanks for the recipe and I hope you are feeling better and better.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 7/2/2009 4:23 AM (GMT -7)   
Hi! Marji,
It has to be the white creamy salad dressing, not mayonaise, Miracle Whip, Not Hellman's
sue too
ps. if you add cocoa powder to the frosting, and more milk, it drizzles like a work of art
pps. bet a nickle, your son will think it's the best chocolate cake he ever ate. The clue is not overbaking,
ppps. Happy 4th of July to All, rest alot, delegate work whenever you can nono

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

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