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Doni: CREST Syndrome

The doctors were always interested like, "Wow look at this," but since I had no insurance, they would not touch me.

Medicines and bandages for Doni, by Sherrill Knaggs, ISN Artist I was diagnosed with Raynaud's when I was sixteen. I had numbness in the third finger of my left hand. I saw a doctor who gave me medication that improved my circulation and I never thought about it again.

When I was nineteen, I was admitted to the hospital with the first three fingers of each hand ending in puss pockets that I was trying desperately to treat with salve and bandages. I entered the hospital late one night about 1:00 am and did not leave for thirty-two days. I had anemia and gangrene.

I was given a thoracic sympathectomy, on my left side, at the neck. That was after weeks of nerve blocks so they could wash and debride the wounds and get the infection under control. I lived in excruciating pain every day. The surgery dilated the vessels on my left side from my waist up to allow the blood to flow better. It seemed to work, since I did not have any trouble with my left side until now.

After so many years of periodically having sores for six months or a year, carefully watching my diet and preventing the causes of sores on my hands, I am now inundated with a full blown attack on my peripheral circulation.

I was gardening (one of my favorite things to do) in March 2004, with my new boyfriend, and I slightly scratched my pointer finger on my left hand. The sore escalated to a wound rather quickly. I broke up with my boyfriend, lost my job and my infection spread. My stress level was at an all time high.

I contracted bronchial pneumonia in November and was crying myself to sleep due to the pain in my hands. The pain was just from the wounds, as the infection had spread to the third finger on my left hand was unbearable at times.

I stayed with friends and went from emergency room to emergency room to get pain medication and help, but with no job, no money and no insurance, I had difficulty just getting pain medication. The doctors were always interested like, "Wow, look at this," but since I had no insurance, they would not touch me.

I went to stay with my daughter at Christmas and she started taking care of me. My stress level was elevated somewhat but the pain just kept me from sleeping, eating and doing things for myself such as bathing and dressing.

Then in February, on my third visit to the emergency room, a new doctor had some sympathy for me. I was at the point of killing myself just from the pain. He said he thought he could get me some help.

The ulcers were not really infected, so they were reluctant to give me antibiotics but eventually I persuaded the doctor to do so. He gave me a new strong antibiotic for seven days…three times. It did not touch the ulcers on my hands; they just kept getting worse. Then he referred me to a new clinic and they did indeed give me a type of treatment. The put nerve blocks in my hands and then soaked and debrided the wounds three times a week. That did not really help, but it kept my wounds clean and and they gave me plenty of pain medication.

On April 1st, I had to move since I was unable to help my daughter pay the rent and other bills. She was having her own marital and financial troubles. By this time the tip of my third finger was totally black and the nail was gone. My pointer finger was still oozing and half the nail was gone.

I moved to Interlachen. I knew a woman, Mickey, from many years before. She now lives across the lake from me. She was my angel. She came by to see me and make sure I was all moved in and she was appalled at the pain I was in and just took over. She was just what I had needed for months. The next day she took me to the emergency room. The doctor there told us he could not do anything for me. He was a hand specialist. He gave me some pain medication and two referrals, one to a scleroderma specialist and one to a wound treatment center. Mickey actively sought appointments, but both centers denied me treatment. The wound treatment center was not accepting new patients and the rheumatologists would not see me without payment.

I was so anemic and crazy from pain that all I could do was lay around and cry and want to just end my life. That is why I call Mickey an angel. I had no hope of ever getting any help and she just came along and picked me up put me in the car and said this is what we are going to do. We went to the emergency room at another hospital without referrals in hopes of alternative help. She talked to the doctors and made sure someone directed us on a course so that I could receive the treatment I so desperately needed. There we met with two doctors, one of them a hand surgeon. He was aghast when I removed my bandages. He asked me, "How did it get to this point?" I said, "No one would treat me," and he assured me an appointment in the wound treatment center which had already turned me away. He got me in the very next day. There, I saw an orthopedic surgeon who prescribed medication for me and set an appointment for the fingers to be amputated as soon as possible.

Seven days later, Mickey drove me to the Surgical Center, where everyone was wonderful. They heated my blankets, they put this hose under the blankets, blowing hot air to keep me warm before surgery, made sure I was pain free and comforted me along the way. I had two fingers on my left hand amputated, even though my hemoglobin was 6 and surgery required it to be 10. The doctor told me he was doing it anyway because he knew I had to be in excruciating pain. I went home and Mickey checked on me a couple of times a day, brought me food, helped me bathe, did my laundry and tried to make me laugh every now and then.

At the surgical center the doctor suggested to me that I had CREST Syndrome instead of my previously diagnosed Raynaud's, due to the calcium deposits I have everywhere, the scleroderma I have on my esophagus and the anemia. So, as soon as I had the strength, I got on the computer and looked it up. Wow! That is all I can really say.

I still have not had my stitches removed, as my wounds are being slow to heal. I have a new sore on the right hand, third finger, that is getting bigger everyday but I am still without treatment. I was referred to a rheumatologist by the surgeon but I cannot find one who will see me without payment. I am going to try to see a family doctor just to get my basic medications for circulation, restless leg syndrome (from my anemia), constant indigestion, and pain.

I cannot really hold anything. My hands are very weak and cramp throughout the day. My daughter is back staying with me and helps me do the daily things of personal hygiene and eating. Mickey still checks on me and pushes me to go to this doctor and that treatment. She inquires about financial help with my treatment and medication every day and pays for my medications a lot.

I told you she was an angel! Just when the lights were about to go out she flipped a switch for me.

I should not go without saying that my daughter, Elisabeth, with all her woes still helped me with all my daily wants and provided a place for me to stay, drove me to doctors visits and cried with me for months before moving to Interlachen, and she still does so when she can.

I have applied for disability, Medicaid and a few other avenues of help. So I sit here in limbo awaiting my healing and news of financial help. I still have panic attacks but not as often. I still just burst out in tears for no known reason, like now. I still have pain but not as severe. I still am depressed but sometimes I am hopeful.

When I found this site, I was amazed to find that there others are out there who are just like me. I knew it but, I am still just amazed. I am forty-nine years old and will be fifty in August. I have had this disease most of my life.

I wonder if it is genetic. I wonder if I will ever be able to lead a normal life again. I am scared and the fear often just overwhelms me. I look forward to interacting with others on this site through chat groups. Maybe new hope lies just around the corner. I cannot wait to see.

~ Update 09-10-05 ~

I last wrote in June when I had just had two fingers on my left hand amputated. I was doing well until the cuticle on the third finger of my right hand dried and cracked about two weeks before I had my stitches removed. Now I have an appointment to have this new ulcerated finger amputated.

It was a relief to be out of bad pain for a few weeks but now I am right back where I was last April, with the exception that I now have pain medicines and Medicaid. Having Medicaid has allowed me to get medication and doctor appointments. I have to still struggle with paying bills because I have no word from Social Security.

The hardest thing about this journey besides the pain is the not being able to work and pay my bills. I am blessed with people helping me and having possessions that I can sell, but it is very depressing.

I am excited and sad about my amputation. I am excited about having no more pain but sad about no finger. Today the pain is not too bad. Yesterday it was horrible. I wanted to just cut them all off and get it over with in one fell swoop.

So once again I am dealing with new doctors that are 'WOW'ing me when I undress my new wound. All the history and information again and giving me antibiotics thinking I have a finger infection.

This time it was not quite as bad since I do not have to go to the Emergency Room. I have Medicaid so I can see regular doctors. So we will see from here how it goes. I do not miss my other fingers and I doubt I will miss this one.

~ Update-10-01-07 ~

The last time I wrote I was suffering with the pain in my middle finger, on my right hand. I had it amputated in August, 2005. Then, again, in August 2006. The first time they didn't take enough off the finger, so it abscessed again. Finally, after another year of painful suffering, they removed some more. This time it did the trick. It healed after six months.

I then developed a sore on the pointer finger of my right hand. I quickly went to have it removed, in June 2007.

I am so happy to say I am wound free for the first time in three, long pain enduring years. I still have pain but it's nothing compared to what it was.

I still have seeping calcium spots on my right arm, close to my elbow. They fester up sometimes, but as soon as I drain them the pain usually subsides. I miss my fingers sometimes but I don't miss the pain.

On October 3, 2004, my daughter, Elisabeth, was killed tragically, in a car accident. It took its toll on my heart but somehow with the help and care of my friend, Mickey, I have prevailed. My recovery from that loss is a long process. I miss her every day.

Now I am alone in this life. I moved to a place where the medical treatment I need is closer. My daughter had two girls; Grace is seven years old and Emma is three years old. I see them often.

I am going to a pain management program which has really helped me cope with this disease and I go to regular doctor appointments. Yes, I drop things all the time, I can't sew anymore, or really use my hands doing any kind of heavy work, but I can hold a plate and a fork. I can bathe myself. I shop for myself and do okay!

It is lonely because people just don't understand because the disease is silent and not obvious. I feel like I am constantly trying to explain. People usually don't ask about the absence of my fingers, they just stare at my hands. I would rather they just ask. I hope all you suffers out there have found some help to aid you in your pain. My prayers are with you.

To Contact the Author

Email: [email protected]
Story edited 06-04-05 JTD
Story posted 06-06-05 SLE
Story update edited 09-10-05 JTD
Story update posted 09-13-05 SLE
Story update edited 10-01-07 JTD
Story update posted 10-12-07 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Calcinosis (calcium deposits)
Causes of Scleroderma: Genetics
CREST Syndrome
Digital (Finger) Ulcers
Gangrene and Amputation
Raynaud's Stories
Ulcers (Finger)
Types of Scleroderma

What is Scleroderma?
PDF Brochure: What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Donna: CREST, Raynaud's, possible Fibromyalgia
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