Our 20 Year Anniversary. Yes, Me and Raynaud’s: Here’s some Ideas From an Old Couple.

Yes, it’s been 20 with Raynaud’s. Here’s a timeline list.

1992. My doctors didn’t believe me.

1993. My Doctors were not sure what the hell it was.

1994. Congratulations! It’s Scleroderma! CREST is not just my favorite toothpaste anymore.

2008. Viva Viagra!

2012. Happy 20th to me and my  Raynaud’s symptoms! (Do I register at Macy’s or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud’s is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn’t matter what climate you live in, just take precautions and be plan to be cold all the time. It’s a real timesaver.

2. Tune out people who tell you just because they aren’t cold it means you are just “oversensitive”, because they are uninformed and believe they are helpful.  Remember THEY believe they are helping you.  I know it’s difficult, but I have to tell you receiving stupid advise from well meaning people becomes easier with time.  The sooner you let it roll off of you, the better you will feel.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud’s attack. Bringing having  a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are covered in comfy socks, my core temperature stays consistent.

5. If I have a Raynaud’s attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else’s (They are usually warmer)

6. When having a Raynaud’s attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages are helpful for me .  Scleroderma is not a one-size-fits-all disease and always ask your doctor f massage is right for you .  Massages can be expensive.  I have found Massage Envy very affordable and their therapists are well trained. Never be afraid to ask about a therapist’s experience. ALWAYS observe their cleanliness practices and don’t be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a “discount”  place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn’t always mean they are consistent with cleanliness practices either. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don’t be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage helps quite a bit on my hands and feet,but before you even get a massage anywhere on your body ask your doctor first.  Oh and during a pedicure, If someone ever pulls out a razor and tries to “trim your calluses” with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only person that should ever use a razor to trim back calluses.  Your podiatrist can show you or a loved one how to do it at home.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven’t tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran’s healthcare, which is even better.) and a private OT chain treated me like a cash cow. It wasn’t the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.  The right occupational therapist will teach you many useful exercises and prevention tips.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. The very best thing that helps keep my Raynaud’s in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son’s not here, my dogs will at least keep me company. They look at me like I’m crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don’t be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.  (Good God!  James Brown’s Celebrity Hot Tub Party)

16. Moisturize.  For me, Kama Sutra Oil* is the only thing that keeps my the skin on my hands and from cracking. The skin on my fingers is scar tissue and  their Sweet Almond Oil seems the most effective for me.  It’s not just for hot monkey love.

So those are my tips.  If you have any to add, please leave them in the comments section because my way is not the only way.  Living with Scleroderma isn’t easy, but it can be done.  It takes a lot of patience, some sedatives and some good old fashioned stubbornness, but it can be done.  You may have Scleroderma, but Scleroderma does not have you.

*Update, June 3, 2014:  I have found in addition to Kama Sutra Sweet Almond oil;  Cetaphil, Amore D’Or or Tarte D’Amande by Votre Vu, or a good “dry” body oil to be effective moisturizers as well.