Cold Weather and Secondary Raynauds Not Compataible

Cold weather isn’t good for the body definitely going to have to wash my thick fleece blanket. Only problem is part of my body will get to hot which spells trouble for my toes and fingers.   Last night was the first time ever all my toes and fingers were tingling and painful.  It kind of felt like when u cut ur fingertips too far down and the tip becomes painful, yep that is what it felt like by magnified.   One had will have white finger tips the other hand red finger tips   On top of the hands and feet are swollen, just when I was getting everything under control I have an allergic reaction to the contrast, get that under control after 2 days then the temperature drops and the Raynauds (definition below) below) flares up.

I learned the hard way my body is nowhere near what it used to be, simply rearranging furniture, folding clothes, which involved up and down motions and side to side.  Well my eyes, body and stomach didn’t like it, especially since I walked more than normal through the woods.   Headache, heavy sleepy feeling, dizziness and nausea, the nausea seemed to stop when I sat down, headache went away with all the lights off but not the nausea.  Simply cleaning meant a short date with the porcelain god.

It is frustrating a lot of things I want to do that shouldn’t take long but a body that doesn’t work properly, a 30 minute job turns into a week or more job it is beyond frustrating.  And for some reason I haven’t been able to attain my normal sleep though I have had vivid crazy ass dreams that would put Hollywood to shame.   Now only if I could hook the computer up to my brain download the movies and stories I would be a freaking Billionaire.   So much creativity trapped in my head that somehow needs to escape and maybe make me some money to pay off all these freaking medical expenses.  The ugly truth the longer I keep the cancer in a choke hold and pinned to the mat the more expensive it gets cause you now the CEO of the Pharmacy needs even more money. 

Oh well I can only work with what I got, hopefully I can find some cheap rugs for the floor that will hopefully help to keep my feet room.   Hopefully I can find some fuzzy cool slippers and some fuzzy socks this week.   Hopefully the temperature will rise some so I can finish cleaning out the shed/workshop without having to turn on the heater.  Cause I need to get Gayle’s Attic and AcTion FaShion (sixth scale toys) store up and running. 

http://www.niams.nih.gov/Health_Info/Raynauds_Phenomenon/raynauds_ff.asp

What is Raynaud's?

Raynaud’s phenomenon is a disorder that affects blood vessels, mostly in the fingers and toes. It causes the blood vessels to narrow when you are:

• Cold
• Feeling stress.

Primary Raynaud’s phenomenon happens on its own. Secondary Raynaud’s phenomenon happens along with some other health problem. (I have this one)

Who Gets Raynaud’s Phenomenon?

People of all ages can have Raynaud’s phenomenon. Raynaud’s phenomenon may run in families, but more research is needed.

The primary form is the most common. It most often starts between age 15 and 25. It is most common in:

• Women
• People living in cold places.

The secondary form tends to start after age 35 to 40. It is most common in people with connective tissue diseases, such as scleroderma, Sjögren’s syndrome, and lupus. Other possible causes include:

• Carpal tunnel syndrome, which affects nerves in the wrists
• Blood vessel disease
• Some medicines used to treat high blood pressure, migraines, or cancer
• Some over-the-counter cold medicines
• Some narcotics.

People with certain jobs may be more likely to get the secondary form:

• Workers who are around certain chemicals
• People who use tools that vibrate, such as a jackhammer.

What Are the Symptoms of Raynaud’s Phenomenon?

The body saves heat when it is cold by slowing the supply of blood to the skin. It does this by making blood vessels more narrow.

With Raynaud’s phenomenon, the body’s reaction to cold or stress is stronger than normal. It makes blood vessels narrow faster and tighter than normal. When this happens, it is called an “attack.”

During an attack, the fingers and toes can change colors. They may go from white to blue to red. They may also feel cold and numb from lack of blood flow. As the attack ends and blood flow returns, fingers or toes can throb and tingle. After the cold parts of the body warm up, normal blood flow returns in about 15 minutes.

What Is the Difference Between Primary and Secondary Raynaud’s Phenomenon?

Primary Raynaud’s phenomenon is often so mild a person never seeks treatment.

Secondary Raynaud’s phenomenon is more serious and complex. It is caused when diseases reduce blood flow to fingers and toes.

How Does a Doctor Diagnose Raynaud’s Phenomenon?

It is fairly easy to diagnose Raynaud’s phenomenon. But it is harder to find out whether a person has the primary or the secondary form of the disorder.

Doctors will diagnose which form it is using a complete history, an exam, and tests. Tests may include:

• Blood tests
• Looking at fingernail tissue with a microscope.

What Is the Treatment for Raynaud’s Phenomenon?

Treatment aims to:

• Reduce how many attacks you have
• Make attacks less severe
• Prevent tissue damage
• Prevent loss of finger and toe tissue.

Primary Raynaud’s phenomenon does not lead to tissue damage, so nondrug treatment is used first. Treatment with medicine is more common with secondary Raynaud’s.

Severe cases of Raynaud’s can lead to sores or gangrene (tissue death) in the fingers and toes. These cases can be painful and hard to treat. In severe cases that cause skin ulcers and serious tissue damage, surgery may be used.

Nondrug Treatments and Self-Help Measures

To reduce how long and severe attacks are:

• Keep your hands and feet warm and dry.
• Warm your hands and feet with warm water.
• Avoid air conditioning.
• Wear gloves to touch frozen or cold foods.
• Wear many layers of loose clothing and a hat when it’s cold.
• Use chemical warmers, such as small heating pouches that can be placed in pockets, mittens, boots, or shoes.
• Talk to your doctor before exercising outside in cold weather.
• Don’t smoke.
• Avoid medicines that make symptoms worse.
• Control stress.
• Exercise regularly.

See a doctor if:

• You worry about attacks.
• You have questions about self-care.
• Attacks happen on just one side of your body.
• You have sores or ulcers on your fingers or toes.

Treatment With Medications

People with secondary Raynaud’s phenomenon are often treated with:

• Blood pressure medicines
• Medicines that relax blood vessels. One kind can be put on the fingers to heal ulcers.

If blood flow doesn’t return and finger loss is a risk, you will need other medicines.

Pregnant woman should not take these medicines. Sometimes Raynaud’s phenomenon gets better or goes away when a woman is pregnant.

What Research Is Being Conducted to Help People Who Have Raynaud’s Phenomenon?

Current research is being done on:

• New ways to find and treat the problem
• New medicines to improve blood flow
• Supplements and herbal treatments, but these have been found ineffective in most studies
• Causes.

For More Information About Raynaud’s Phenomenon and Other Related Conditions:

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Information Clearinghouse
National Institutes of Health

1 AMS Circle
Bethesda, MD 20892-3675
Phone: 301-495-4484
Toll free: 877-22-NIAMS (877-226-4267)
TTY: 301-565-2966
Fax: 301-718-6366
Email: NIAMSinfo@mail.nih.gov

16 CT Scans and 2 many Specialist Doctor's

Eight years people Eight years of getting CT scans twice a year, I have watched the contrast go from crappy chalky looking disgusting mixed with cola, to a clear contrast in lemonade or can be mix with whatever you bring.  Huh??  That is what I said apparently I can bring whatever I want to drink to mix with my contrast…ugh News to me but apparently that has been an option for a while.   I think I may be the only Stage IV Breast Cancer patient that started treatment in the old Cancer Hospital that is now a walkway.  My jacked up Immune System and Cancer Requires, like Six Specialist doctor's all with clinic's in different locals around Chapel Hill and really none of them work on the same day. In the end only 1 gets the finally say on all treatments that would be my Oncologist.  

Scans are still NED, I actually read the result this time, and learned that I have:

Lungs:  Tiny subpleural right middle lobe nodule (4:37) is unchanged. No airspace consolidation or pleural effusion.

BONES:

Stable rounded sclerotic focus in the left glenoid, likely bone island, since the earliest available CT of December 2012.

What in the Hell is a bone island?  I guess I will have to do some googling.

More doctor’s appointments in the next two months, the month of December will bring forth the eye doctor.  My eyes are the most troubling and quickly becoming as expensive as the damage done and continued to the teeth.   I have yet to pinpoint what cause the eyes to flare, but it isn’t funny, headache, dizziness and a trip or two to the porcelain god from the nausea.  I have a feeling I have yet another infection or scratches on my cornea, not really looking forward to the trip.  After the other day I am going to have to find some good blackout curtains that match my decor, cause me and the sunrise are not good friend and it likes to disturb me by shining right on my freaking bed.

The month of January will bring forth two more appointments Dermatology and Rheumatology.   

My oncologist is concerned about some the damage my skin is getting from the prednisone and antibiotics I have to take to deal with the swelling and inflammation.  My skin I believe has become over sensitive, I literally got contact dermatitis from the tubing that delivered the contrast thru my port for my CT scan.  My oncologist thinks I may be coming allergic to the contrast as well since my left side was flushed after the scan.  I think some of the issues was the fact the Nurse that accessed my Port didn’t follow proper protocol,  normally after being accessed it is flushed with 2 saline syringes, and then the yellow syringe, and should have been flushed with 2 saline since I was getting blood drawn afterwards.  I told the male nurse when I got to the blood lab, he told me to call the nurse out next time and to tell them to follow protocol.  

Oh well, then I will be off to Rheumatology.   I am making a whole list for this appointment and hopefully I will remember to bring said list with me.  I definitely having serious issues with my feet crappy Raynaud’s and arthritis from Hades.   

Apparently from notes from my first bone scan I have degenerative arthritis in my left knee and both feet.  The cold weather is not helping the situation, the more I try to walk the more the foot acts up.  Funny thing is the pain and stiffness was originally when I would get up in the middle of the night.  Both feet are about the same but the right is little worse OK may be a lot since it hurts when you flex aka walking heal to toe.  I am pretty sure its is the arthritis and considering I had 2 surgeries on my right foot as a child may be why that foot is worse.   I have found that my flat sole wool lined boots are the most comfortable for the foot while also keeping them cozy and warm.  I need to get some fuzzy cool slippers for the house along with some fuzzy socks.

Oh and sleep where art thou?  Hopefully I will get my sleep back right now it is only a couple of hours which isn’t good.  Lack of sleep means a painfully day or days on the horizon.  Need my sleep so I can have some energy to finish organizing the workshop so I can open an ebay and etsy hop to make some extra cash.  

Exceed available Energy, Pain and Scan Anxiety weighing heavily

I definitely exceeded my available energy today, and now I am paying for it, hopefully the pain will stop when I attempt to sleep. I was cleaning up my Hobby/Play room so I can start creating and also opening my Online Toy/Comic etc shop, cause we be broke. I also moved my living space around so I can build a playground with a jungle gym so she will stay off the Barbie Malibu Mansion. She loves laying on the top trying to catch her tail thru the openings on the roof. She also uses as an obstacle course she will go to the top of the stairs and sprints very loudly down the stairs then slides as she makes the turn on the linoleum floor then leaps about 5 ft to the table holding the house races up and either slides down to the book case or stays on the pea for a while trying to get to the light fixture, swat a fly, or play on the peak of the house like it's a jungle gym.

I also created a hole for her to access the space underneath the staircase as her private space which is away from Loki (our male panther looking black cat who followed me home a couple months ago. He stays upstairs with Carrie, he is an indoor/outdoor cat, he stays out in the day and comes in around 9 pm for the night time. Riley doesn't care for him though he is beyond friendly and keeps trying to make friends and play. All Riley wants to do is the make sure he knows she is the Queen and Everything belongs to her. She knows when it is time for him to come in and stands on the staircase or near the staircase where Loki is sure to see him and she hisses at him. Though today she was too enthralled with her latest hiding space underneath the staircase that she forgot about Loki. Now she has 3 places to hide her high perch above the closet, her bunker underneath the staircase and her cushion shelf in the bathroom that has a view of the backyard and the tree the birds love to hang out on.

I also had to rearrange the furniture so I can put the ottoman bench back in front of the sofa so I can keep my feet propped up. I know from my bone scan that I have Osteoarthritis or the Degenerative Osteoarthritis I can't remember which one they said, it was in both feet, my left knee, my lower spine and my neck.  My next appointment is fast approaching just 7 days, where I will get blood taken, my port flushed and the dreaded scan. Which naturally means scan anxiety is in full force. The dreaded scan that will determine whether of not my parole from chemo is up or will I continue to dance with NED (no evidence of disease, basically the cancer is too small to pick up with scans). I am not really looking forward to it especially with new pains that have started to flare up. The pains are either the caner or Sjogren' either way the are a royal pain in the ass. 

As I am typing this I am trying to ignore the pain in my left knee and feet my medicine dulls the pain to make it bearable but doesn't get rid of it. Each day that passes means more medical bills as I am an "outliner" a "2%er" basically defying the odds by living past the "33 months" which is projected life expectancy of Stage IV patient. Here is a link to an article that gives insight to life as a Stage 4 patient http://www.medscape.com/viewarticle/854295?src=stfb.  

"Patients living longer with metastatic cancer are "pushing the boundaries" of what science and clinicians can explain in terms of survival, said Karen Gelmon, MD, a medical oncologist at the University of British Columbia, in Vancouver, Canada.

Long-term survivors feel like a "new species," for which healthcare providers ― especially oncologists ― were not necessarily prepared, Dr Gelmon told Medscape Medical News"

Thankful for me the Doctor in charge of the Resident Oncologist decided to keep me as her patient 6 months into my treatment as my Resident Onc had finished his rotation and was going to a clinic in the mountains.  Her specialty happened to be Multidisciplinary, at that time we had no clue the wild ride we were going to face.  Instead of brushing me off she listened to the pains and issues I described and figured out it was an Autoimmune issue, and being at a teaching hospital meant I could receive treatment at the same hospital.   A few test later and I was dx with an Autoimmune disorder called Sjogren's.  I had escaped chemo with little to no side effects to speak of except a sinus infection, well the Sjogren's made sure I felt basically all the side effects that the chemo's I was on had. 

The costs of treatment is beyond crazy even with insurance their still is the copay, I remember the first bill I got and the statement I got from the insurance showing who much the paid.  $15,000+ for ea chemo my part was like $2500 I happened to have 24 do the math, that was just the first chemo the other one being an older drug was like $500.  Then including the 7+ surgeries both cancer and sjogren's related, test after test, $70 copays, insurance is good but the cost is so outrageous and the longer I live the bigger my bills get.  Even tests and scans are an arm and leg, and I have had 1 PET Scan, 1 Bone Scan, 15+ CT Scans of chest/Abdomen, 30 Chest xrays, MRI of Brain, 4 cauterization of tear ducts, Sleep Study, exploratory GI surgery, Ultra Sound of Abdomen, Liver Biopsy while simultaneous getting a port installed on a hard table not in a normal surgery room with no laughing gas, Bilateral Mastectomy, Port removal of breast implant and taking extra skin off, 4 surgeries on my but to try and figure out what is causing and trying to correct Anal Fissure, Infection that hospitalized me, Walking Pneumonia, 30 days of radiation and the list can go on all this was a 2 year period.  

I have less intrusive tests since trying to get a handle on my Sjogren's due to my cancer my treatment has to be adjusted the normal protocol doesn't apply to me.. Life has become living 3 months at a time waiting for a bomb to go off, knowing that at some point the cancer is going to take you out the only question is when. 

#IamSusan