Sylvia’s Letter to Her Loved Ones

I recently mailed a form letter to my family, explaining my challenges. I’d like to share it with you:

“I wanted to send you all some information of Psoriatic Arthritis in hopes that you’d understand better what is going on with me and my health. Arthritis is a disease of the joints and connective tissue while psoriasis is a skin disease. Both are chronic, both involve inflammation, genetic and environmental factors are contributors and they sometimes occur together to become Psoriatic Arthritis. Psoriasis is characterized by abnormal skin patches made up of skin cells reproducing too rapidly and not maturing properly. One out of three people with psoriasis has a family member who also has the disease. Diagnosis of psoriasis is fairly easy, skin lesions are visible and sometimes fingernails/toenails are used to help with diagnosis, as they become pitted, thick and raised from the nail bed. 10 to 30% of people with psoriasis also develop arthritis. The arthritis typically follows one of four patterns:

1) Pain and inflammation of single, large joints, such as the knee as well as finger and toe joints.
2) Pain and inflammation of the small joints of the hands and feet, along with knees,
wrists, ankles and elbows.
3) Bone destruction, particularly in the fingers, causing them to shorten.
4) Inflammation of the spine, causing the vertebrae to fuse and the spine to become immobile.

I have the second pattern listed. Treatment depends on the pattern and severity of the disease. Generally it consists of prescription medication, including non steroidal anti-inflammatory drugs, basically fancy aspirin (Ibuprofen, Aleve, Advil) that you can get over the counter and those by prescription (Vioxx and Celebrex are the newest ones). Then you have your Disease-modifying anti-rheumatic drugs, I’m taking Methotrexate. If people have severe inflammation, a cortisone medication is used to ‘cool off’ the inflamed joints. This is why I’m taking the Prednisone. There is a lot of trial and error to the doses, it’s difficult to find the exact combination that works. If I take enough prednisone it generally keeps the inflammation under control. My resistance to infections is lowered, any wound I get takes longer to heal. I retain water and have gained weight because of the prednisone. The methotrexate is to reduce immune function for symptomatic control of psoriasis and arthritis, but it makes me very nauseated. The psoriasis isn’t too bad, mostly on my scalp and I can live with it fairly easily. The arthritis is the hard part. Pain and swelling, mostly of my fingers and wrists, make it hard for me to carry the milk carton to the table with one hand, open a jar of jelly or lift a pan from the stove. Shoulder pain makes it difficult to raise my arm so I can brush my hair or reach high in the cupboard. I am tired a lot of the time and just haven’t the energy to do much. I have had surgery on both knees and my right knee is still acting up, making it hard to have it in one place for any length of time. I have to keep adjusting it’s position. I can go up about 5 steps with minimal difficulty but any more than that is almost impossible. My back aches after sitting 10-15 minutes and I have to stretch and shift frequently. I have difficulty with fine motor skills, holding a pen to sign my name, a needle and even holding the telephone receiver cramps my hand. Some days getting dressed is a challenge and other days, getting undressed is the challenge.

I won’t ever be ‘cured’ but I have a good support system in my family. John takes good care of me and continues to help when I need it. I get back rubs, neck rubs and leg rubs when I need them. Sometimes I get whinny and feeling sorry for myself but he hangs in there with me. He knows when I’m hurting and gives me the strength I need to see it through another day. My parents helped around the house. Mom taking over the household chores and giving me foot rubs, helping with neck excersises so I don’t stiffen up any more than what I already have. Dad, acting as chauffeur, driving me when I didn’t feel I should or could drive and by helping with the larger chores around the house. He mowed, planted, moved and did just about anything I asked. Clarissa’s been great too. She gives me neck/back rubs, asks if I need anything and then follows through if I say yes.

At this point in time I’m not working and that’s hard also. Say a prayer for us and keep us in your thoughts. I hope this helps, if not, let me know and I’ll try to explain it better. Thanks for your prayers.”

I have had several family members respond, stating they knew I had arthritis but didn’t know the details. They were very appreciative that they had gotten this information. I just wanted to share it with all of you. Thanks for taking the time to read

Sylvia Patterson