CAN YOU FEEL THE PAIN?

November 28^th, 2003 I read an email, a letter and answered a phone call from friends who are living the life of incurable illnesses along with me. These contacts were from women friends who used to be in “our” lupus support group. It was back when we were able to attend meetings on a monthly basis and support each other in person. Over the past five years we have all declined at varying rates. Reading the email made me feel worse than I did when I woke up this morning. (Waking up four times during the night didn’t make thinking about the worsening health of others easier.)

It occurred to me that I haven’t read anything about what happens when the one who also needs answers and support becomes the one that others turn to for help. When I take the time to think about it—which I try not to do—it becomes more than a bit overwhelming. It didn’t take long for the weariness to turn into righteous, rightful anger. Where in the hell are the supposed medical practitioners who shamelessly hold out their hands to collect money for writing a few ‘scripts, (prescriptions) and reminding you to make your next depressing appointment? Depressing, and near useless, but “What If” will find you dragging your body back for another go ‘round.

I don’t need them to recite hypocritically that it’s a shame that I have an incurable disease. A shame? It was way past a frigging shame fifteen years ago. I have more than one incurable illness, but the main shame I feel is towards a country that spends more on war than it does on research for saving lives.

The other shame that I’m forced to swallow is finding myself trying to comfort sisters with words concerning what treatments are available. There is always the hope that one of us will hear something that might help in even the slightest way. Some things work for a short period, but other times have worsened symptoms for me. Yet, I hear myself parroting words about treatments that have bought me a little more time, and hopefully a little less pain. (Judith there is no cure for lupus!)  Some days the entire situation makes me question why I fight so hard to live. There are times I’ve prayed for death to take me to the other side. I write these words, but my heart would finish breaking if I were to say them out loud and cause someone to lose hope. 

When someone holds onto the hope you know something that will help relieve some of her symptoms, or have learned a way to manage pain more effectively, you better put yourself in the pulpit and do more than pass the collection plate for yourself.

Perhaps I should mention AGAIN that lupus is an autoimmune disease that affects women, mostly women of color, 90-some percent of the time. I’ve lived with it for more than a decade, and the livin’ certainly hasn’t been easy. Don’t blow me off as a whiner. Although, I could justifiably be one, I don’t have the concentration or interest to waste on something else that’s as useful as a rope on a goat. 

For numerous years I haven’t been treated with any new medicines prescribed for lupus or multiple sclerosis. The same mind and body breaking treatments are still being used as they were when I was first diagnosed. I’m on my third form of immune suppressant. To say that I have much of a workable immune system is just something I write to “comfort” myself that at least the medicines are working to suppress the mutant cells in my body. When reality sinks in, I remind myself that whenever I’m around others there is the risk of catching something that could be fatal.

Truth Time: Can anyone conceive of constantly being on guard when you’re with your partner of numerous years? Does the thought of her touch, the one that always brought such joy, being replaced by caution and fear allow you to understand the magnitude of what is happening? How would you maintain a safe, loving relationship? A relationship where you don’t have to give serious thought to every aspect of the act of lovemaking. It’s beyond AIDS and other illnesses. We’re talking the simple act of kissing or the exchange of saliva. If you can’t get helpful medical advice from your doctor, what type of safe sex advice do you think a lesbian will receive?

Tell me that you honestly feel the depth of this medical madness and the mental pain it inflicts? I sincerely hope that the majority of you were only able to imagine it in the terms of my definition.

Excuse me if I’m rambling, but I’ll get back to the main focus of this article shortly. Words and structure are taking longer these days. This is pure “H” hell for a writer.

Last night I was trying to organize numerous pieces of medical receipts and lab reports. At one point I found a packet of pictures of discoid skin lesion eruptions that Sue had taken over several years. They covered large areas of my body. We were both shocked at how horrible they appeared. I spoke frankly about the unbearable pain they had caused. We looked at the dates written on the back of the photos. Many were taken before I was diagnosed with Systemic Lupus.

During this period of time I was constantly reading about neurological and autoimmune diseases. I had a sinking feeling that something unrelated to multiple sclerosis was taking place. A number of the symptoms I was encountering weren’t ones associated with MS. I began to underline symptoms pertaining to lupus in our Merck Manual. (This is an invaluable medical resource book.)

During the next outbreak of lesions I allowed them to get completely out of control then made an appointment with a dermatologist. I insisted he do punch biopsies of the lesions in hope of finally receiving a correct diagnosis. This needed to be done before any treatment could be started.

He told me that I would have to pay for the tests because my insurance wouldn’t pay for anything that a doctor hadn’t ordered. Let’s just say that I scared him enough that he wanted to do the tests and get me out of his office. Pain and ignorance that cause me further harm do not allow me to be polite or have myself pushed beyond further endurance.

To make years of a seriously long story shorter, the tests came back acutely positive for lupus. My primary care doctor’s response at my next visit—“Judith, you already have one incurable disease. I didn’t want to tell you that you have another.” In all calmness, on the outside, I’ll say, “NOT WANTING ME TO HAVE ANOTHER ILLNESS DIDN’T PREVENT IT!” He wasted years of treatment that only the Spirits know if it would have made a difference in my health today. Please, get away from anyone who treats you in this life-shortening manner.

DIRECT QUOTES FROM SISTERS WITH LUPUS:

Email—“Judith, My health has been bad (frowning face symbol) Firstly, I have been having seizures and as a result my prednisone (steroid) has gone up. I’m fat as hell! To top it off I’m on Cytoxan. I need six treatments and I have had three already. I sit there for four or five hours while they give it to me intravenously. They call it chemotherapy. My hair is still intact, but I get sick in the stomach a lot and I have the shakes. How are you doing? I’m wearing a wig but because my face is so round the elastic is all stretched out. Love,--”

Letter—“Judith, The new pain dosage seems to be better but it hurts like hell to take the patch off. My husband uses baby oil, soap and Vaseline to try to get it off. I start crying before he even removes the patch—now I know why they call them PAIN PATCH. I take hydrocodone for the breakthrough pain and I still can’t sleep at night so I take Xanax and some time if I’m not up every two hours going to the bathroom then I can sleep. I take Carbatrol for seizures. My face is as big as an apple pie (smile) and I have worn down every pair of shoes in my closet. I have started giving piano lessons to help my income and I have three students. See you—“

Phone Call: “Judith-Thank you so much for the birthday card. I had to laugh at the picture of the high heels on the front and the ugly flat shoes on the inside.” (We both laughed.) “I show the card to everyone. It is so true. I went from very high, to high, now as low as I can get, but my feet kill me.” Judith, I’m not doing well at all. How are you doing? I have five different sizes of clothes that I switch back and forth wearing. Those damned steroids! (How much do you take?) I’m taking 60mgs. again. I just feel so bad all of the time. Everyone wants to talk about the holidays coming up and I just want to pull the covers over my head. Crying sounds. Listen, Honey, I love you but I’ll have to talk to you later. Goodbye and love to Sue also.”

Isn’t it ironic that because of the way society views women that everyone put the main emphasis of their disease on weight gain? Even to the point of not taking certain medicines because of what others might say or think. I could “logically” discuss all of the crap concerning weight gain, but what could I write that isn’t already known about self-concept?

Despite the hellish nature of the correspondence I was able to supply some help for some of the problems. I told my sisters that I had discovered a way to remove adhesive with out breaking the thin skin caused by lupus. It can also be used to remove adhesive from a colostomy connection, nicotine patches and especially for anyone who needs to use pain patches on a regular basis. The name of the product is: Uni-Solve Adhesive Remover Wipe. It can be bought at medical supply stores or you can have your pharmacy order it. This product is for anyone who is sensitive to adhesives for whatever reason. I still can’t believe what a difference it has made when Sue changes my pain patch every 72hrs. The name of the pain patch I use is Duragesic. It comes in doses from 25mgs. to 100mgs and it works by slowly being released into the body in regular amounts. (The medicine in it is Fentanyl.)

Clobetasol Propionate Cream is a steroid cream that heals lesions quickly. The one warning is not to place a bandage over any steroid product.

Steroids and immune suppressants—Cytoxan, Metholtrexate and Immuran cause numerous problems with thrush throughout the body. Nyastatin Cream USP, 100.000 units per gram works well for thrush under your breasts, etc. Diflucan is used for vaginal yeast infection as well as numerous other areas of the body.  Nystatin Oral Suspension works well for thrush inside the mouth and digestive system. Thrush is a major problem when your immune system is compromised. Thrush inside your mouth and gut can keep you from eating the foods that is necessary to keep your strength up. Thrush usually thrives in warm, moist areas. It’s important to deal with these problems immediately. They may seem trivial compared to other symptoms, but I’m not on a first name basis with all of them because I like the taste or feel of any of them.

Another medicine that has helped me repeatedly is Zovirax Ointment 5% (acyclovir). It’s used especially when your immune system is compromised to treat herpes simplex—cold sores. They appear repeatedly because of lowered immune system, stress, and infection from others. I have discovered that eating peanuts or garbanzo beans will cause a blister to develop on my lip within hours of eating either food. Again, I don’t know the correlation, but an outbreak occurs every time I have accidentally ingested anything from these food groups. Another thing worthy of mention is that alfalfa sprouts should be avoided if you are immune suppressed.

One of the most important things to remember is not to confuse the medicines. Do not use steroids to treat viral infections such as herpes simplex. Do not use steroids to treat thrush. Pay close attention to each medicine because your health and life depends on what you do. 

Being able to help in a small or large way in lessening pain or symptoms is enough to put my own life in perspective. Today I can type and believe that it’s enough to keep me going because it makes a difference in quality of life. My one friend no longer cries at the thought of having her pain patch changed. It is a real upper for me when I hear this statement. However, it doesn't lessen my belief that the medical establishment needs to find out the same answers that I stumble across. Knowing what I do I won’t trust any bit of information to chance. Instead, I make it a point to enlighten every doctor and medical association with what I know about this one product in particular. After asking two doctors about Uni-solve, and both of them being clueless concerning the adhesive remover, I think that further research doesn’t need to be wasted while others suffer.

I owe this article to my sisters. After all, they are the ones who constantly try to get me to try a hair weave. I don’t think so! And, it’s not because my hair is about two inches long. (One of the most recent symptoms I have developed is called “Lupus hair.” It means that my hair is breaking off instead of falling out at the roots.)

Nor will I go with them to get fake nails even if they pay. If they’ll go with me for my fourth tattoo—a rainbow cuff around my left wrist—I’ll discuss their femme ideas. I’ll also help them shop for the boots that they’ve always teased me about. Peace and health for all of us in 2005.