Some of the things I have done that work for me for specific issues related to Lupus or the effects of:
1. Hands hurt can’t write
a. Its very hard to hold anything small like a pen so my husband (the genius) used a rubber handball and drilled a hole through it then put my pen through the hole. Works perfect
2. Hands or feet are cold, can’t get warm enough
a. My Aunty told me to make rice mits. She uses fabric to make chambers sewn in fabric and put rice inside those chamber. Its made in a mitten shape (I also have one made like slippers). I warm it in the micro wave and it works great. I also use these gloves that are tight on my hands. They have a sort of rubber mesh on the palm part and a special index finder so you can still use a phone.
3. Lower back hurts can get comfortable in bed
a. After purchasing a sleep number bed and spending a huge amount of money, my back went out and I was never able to get comfortable in bed since. My husband (the genius) bought this zero gravity law chaise and believe it or not it works better than my recliner
4. Uncontrollable pain even after I take the max meds I can take
a. In San Diego, I met a lady who does therapeutic hypnosis (Hypnoworks, Santee CA) for all sorts of issues. She cured me from smoking back in the 90’sm weight control, my sons ADHD and my anxiety with flying so one day after 6 years of living in another state if she could help me with pain. I fly over to San Diego and she did a personal session regarding my pain and even targets specific areas you have problems with. I got my own personal CD that I can use forever and ever. When I get to the point that the pain is so bad that I just cannot control it, I listen to the CD and it helps. It also helps me with sleep.
5. Morning stiffness all over my body
a. I have a coffee cup pre filled with my morning meds. Before I get out of bed, I take my meds with as much water as I can take then I do some stretching slowly in bed. It helps get things moving and grooving in my body. Sometimes it takes an hour or it could take as little as 5 minutes to get out of bed but it helps. Note: there are days when nothing helps and I stay in bed all day. I do try to move. When you don’t, it gets worse
6. Painful joints
a. I use a muscle relaxer, crush it up and mix it with common body lotion and rub it into my hurting joints
7. Walking; my feet hurt badly and the shoes I use
a. Walking is difficult for me for several reasons. First I have degenerative spin disease which is focused on my lower back. Second, the Lupus attacks that area and inflames constantly. Third I have swollen toes, ankle and heels from the disease. On top of that I get restless legs that hurt. All that said, I use the following shoes:
1. Dansko - they are the shoes I use when I need a nice pair. Best prices I found for new ones is on Zappos.com and EBay.com
2. Crocs - These are the ones I use the most. Sometimes I cant walk when I get out of bed and using these gets me around. I use these for most of my day
8. Physical Therapies I have used
a. Aqua Therapy has been the best. I have used Southwest Physical Therapy in Phoenix, AZ for the most part. I have tried 3 places and Southwest was the best for several reasons. First the way their pool is built uses a therapeutic temperature of 98 degrees for the ability to get into your core. Second the water is not chlorinated or salted. It is regular high filtered water that itself is therapeutic. Third, the staff there is highly trained (Susan and Diane) and has done extensive research on this type of therapies. There has been many times that I was unable to walk or move and they got me back on my feet and walking around the block in amount of weeks!
9. Traveling
a. Before I had to medically retire I was a corporate executive that traveling 75% of the time. In order for me to get through any flare-ups that I had while traveling I would:
1. Try to schedule frequent rest periods during my day
2. Use the airport help whenever possible (wheel chair etc)
3. Mail or courier my materials to my destination instead of carrying it with me
4. Find message therapist in the areas I would be in and schedule appointments in between meetings
5. Try not to overdo it before I left of a trip so that I had plenty of energy on the trip
6. Use plenty of hand washing and sanitizer. Being in a public place, you are at higher risk for picking up germs
7. Would assure I ate healthy food on the trip and not fast foods
NOTE: As I remember things that help I will update this page. Feel free to send me tips of what you have done so I can add this for other people to use. We are all here to help and network with each other
