23 April 2012

#HAWMC Post #23

Health Activist Choice Day

Best Friend For Life

The Morian Family circa 1979

Front(from L): Christopher, Kim, Mary; Back(from L): Randy, Sue, Jen, Vikki

I have had two best friend in my life since elementary school. I met the girls when I was about the age of 9 years old. Mary and Kim are sisters who are 15 months apart. I am closer in age to Kim, with only 24 days separating us. Mary is 15 months older than we are. She was a grade ahead of us in school. While I love both of them dearly, much of this will be about Mary, because we have something in common that I wish we did not share, and I hope Kim never shares it with us. Sounds odd not to want to share something with your best friends right? Well not in this case. You tend not to want to share disabling diseases with the people you love. 

La Campagne Ministries

Above and to the left of the pin you can just barely see a road that
curves in almost a half circle and then stops. That's where the Morian family lived when we were growing up!
I first met Mary and Kim at La Campagne Ministries where my Mom and I began going to church. La Campagne was a small church and school located about 6 miles outside of Spencer, IN. We met in the school room for the church service and then the kids had Sunday school at the home of the teacher, Michelle, who lived on the property with her husband and daughters, as did Pastor Gary and his wife Gretchen and their two youngest children (the youngest of whom is near my age), and his older son with his wife and children. The property was fairly large and we walked a good bit to go from the church/school building down a fairly steep hill to get to Michelle's. For me, it was a tough walk at times because of my JRA. But the girls walked slowly so that I'd not be left behind. That is just one of the many ways they have been supportive of me during our more than 25yr long relationship. Wow. Longer than a quarter of a century. There are not many people (aside from relatives) that I can say I've known for 25 years.

The girls accepted me as well as the fact that I had JRA and needed to do things a bit differently than everyone else did, or that I needed to rest more, or even avoid some activities so that I would be able to move the next day.  They also accepted that on some days I was able to do certain things that I could not do on other days. In some very good ways, they also pushed me to at the very least try doing things I didn't think I could do. If not for them pushing me, I'd probably have missed out on a number of things that we did. One thing is sledding down the hill of their VERY steep driveway. I would never have tried that had it not been for the push from the girls. I am so glad they pushed. They also knew when pushing was not such a good idea. And they understood how I sounded somewhat grumpy at times, even when I wasn't. It was pain at times. I couldn't control how my voice would sound at times when I was hurting.

La Campagne Prom 1993

L to R: Kim, Mary, Jerome Graber, Wayney, Vikki
I spent a great deal of time at their house and they at mine. Their parents, Randy and Sue, became Dad and Mom to me. And my Mom became Mom to them. Once when I was with the girls and we were all standing around Dad someone asked him, "Are these girls your daughters?", and Dad said, "Yes, they are," then realized I was standing there as well and explained that while I wasn't theirs, they claimed me as one of theirs. They had  a fairly large family, 4 girls and 1 boy. Their home became a second home to me as well as a number of the kids from church. There is a 10 year age difference between their oldest daughter, Vikki and their youngest child, Christopher. So when all of the siblings had friends over, it made for a large group of kids. A number of us would gravitate to their house on weekends and during school breaks. The school at La Campagne, where Mary, Kim and Christopher went, kept their calendar pretty much the same as the public school's. Even though we didn't go to the same school, having the same days off made it much easier for us to do things together. Many nights when a group of us were staying over, Mom would have to come hush us because we were being a bit too loud and so we didn't wake Dad since he had to get up early the next morning. We'd quiet down a bit but, keeping 6-8 teenage girls quiet was pretty much an impossibility! Eventually, we'd talk ourselves to sleep. 

The girls were active in playing softball. I knew I could not play but I tried to make sure I went to all of their games.  It was while they were playing softball that the first hints of trouble cropped up in Mary. She kept having problems that we assumed were from her twisting or spraining her ankles somehow during the game or practice. Even with my JRA I didn't suspect anything was odd about how Mary kept having problems. Had I suspected it, I don't know that it would have made much of a difference given the problems Mary had later on getting a diagnosis. 

Owen Valley Jr./Sr. Prom 1994

Wayney, Mary
As time passed, we were together almost all of the time outside of school. During Kim's and my junior year and Mary's senior year, of high school, they began attending public school with me. I loved that because it meant more time with my friends. It was kinda funny but Kim and I hung out more with Mary and her graduating class than we did with our own. Mary. her husband, Mark; Kim's husband Tony and my husband, Garrin all graduated in 1994, a year ahead of us. 

Throughout these years, both Mary and Kim had no problem helping me do things I could not do on my own. At times I had on jeans that while not overly tight, were too tight for me to get my hands in my pockets. I would be rescued by either one of the girls. When we went on trips together, I never worried about not being able to do certain things because I knew someone would help me, usually Mary or Kim. No matter how I felt, how much pain I was in, the girls accepted what happened. If I had to change plans and skip something they understood. Much better than most adults do now.  

After high school, we ended up not being together nearly as often as before we graduated. Mary graduated in June 1994 and in Dec. 1994 got married. I'd started dating Garrin in Nov 1994. Kim and I graduated in June 1995 and in July 1995, Garrin and I got married. Kim left Spencer to go to Louisville, KY for school. I was working full time, living in Spencer. Mary and her husband had moved in near us. Just up the alley from us to be precise. We could stand at the alley and see each other, not quite in yelling distance though. I began spending time with her. She had her first child in 1996, Tai. And then in 1997, Mary had Ramsay. So when I was off work, I began going over to her house to help her out with the kids. It was during this time that Mary was having a lot more trouble with pain and swelling. It started before having Tai and during her pregnancy eased up some, if I recall properly, which is common for many women during pregnancy when they have an autoimmune arthritis. It also did not help that during this time period, Mom Sue was battling breast cancer that had metastasized to much of her body. Mary was a new mother, having problems with pan, and was worried about her mother. Mary's doctors were not sure what was going on. I knew that her symptoms were a great deal like mine. I also remember that I kept on her about not accepting the doctors who did not take her seriously. I told her to keep on them because I was worried about her. The similarity in our symptoms just concerned me a great deal. I wanted her to be treated better than I was. I did not want to see her have the joint damage that I did or the disabling problems that I had. 

In high school, my doctors determined that my JRA was in remission. The explanation they had for the pain I continued to have was that I had joint damage, which meant that even though my JRA was in remission, I would still have the pain. I had joint damage because I had NEVER been put on a disease-modifying anti-rheumatic drug (DMARD) to control the disease process. After my diagnosis, I was entered into a study drug trial for children with JRA. The drug ended up being ibuprofen. I was treated with that for awhile after the trial ended. Then I was switched to another drug trial. That drug ended up being naproxen sodium, which is now known as the brand name Aleve. I was on that until I got to a point where the side effects bothered me to the point that I refused to take the medication any longer. It made me feel so sick to my stomach. I also just felt somewhat on edge. I can't really put my finger on it, but I just felt like I was wound up very tight. I don't know if that was due to the nausea or just that it was an odd reaction that I had. I know that I have tried a number of NSAIDs, and my reaction was the same except with varying degrees of being miserable. Even the COX-2 inhibitors such as Celebrex, Vioxx and Bextra (the last two of which are no longer on the market), caused me nausea and they were supposed to cause less nausea. For me, they were as bad as the regular NSAIDs. One NSAID I had tried caused people to ask me if I had gotten high on my lunch break! For one, I don't smoke weed or use any illegal substance to get high. Pain meds don't even give me a high, although I supposed if I took enough of them I might feel a bit high, but that is NOT something I am ever likely to do as it is dangerous. Relafen (nabumetone sp?) made me fuzzy headed. The person who asked commented that I was acting and even appeared as if I were high. That is an odd reaction to a non-narcotic medication. 

Because of my joint damage, pain, limitations  and all of the other things that are part of life with JRA and RA, including the possibility of having organ involvement and even the possibility of death due to the organ involvement in the types of autoimmune arthritis, I was concerned and wanted to be certain that Mary have better treatment than I had gotten. In my case, the lack of aggressive treatment to control the disease and not just treating the symptoms of swelling, stiffness, pain etc., was due to the fact that when I was diagnosed, children were only treated aggressively if their JRA was considered a severe case. Mine was not severe enough to warrant DMARDs. Due to that, I have quite a bit of joint damage. I have osteoporosis that was NOT brought on by my use of prednisone as it predates my use of prednisone by over a decade. I found out that as early as 1987, I showed signs of osteopenia and in 1989, my records show full-blown osteoporosis. I did not learn of this until 2001 when I ordered my childhood hospital records. I also have osteoarthritis, Sjogren's Syndrome, fibromyalgia, facet joint arthritis, scoliosis, and possibly others I am forgetting. I'd not found out about many of the issues I deal with when Mary was first experiencing problems. I just did not want to see her deal with all of the problems I dealt with. I knew from the age of 10 that leaving RA untreated , under-treated or even treated but with a lack of response to the medications that a person could die because of RA. So I wanted Mary to get treatment IF it was RA or another one of the types of autoimmune arthritis with symptoms that are the same as or very similar to RA symptoms. 

When they did her labs, they came back normal, she was not positive for rheumatoid factor(RF). If I remember correctly, the doctor was not going to do anything else since Mary was sero-negative for RF. I made sure Mary knew that about 80% of people with RA have positive blood work. That leaves 20% of people with RA who have negative labs. My labwork has been negative for  RF for 28 years now. I let Mary know there was a possibility she could have RA and not be RF positive. I also told her not to let this drop. Her pain was getting bad enough that I was concerned. 

During her second pregnancy, I believe she felt better again. She gave birth to her son 16 months after having her daughter. As happens with many women who have RA, her symptoms decreased during her pregnancy, only to return shortly after giving birth. I was so glad we lived as close together as we did because I was able to help her with things. 

Morian family 1997 at Kim's wedding.

L to R: Mary, Vikki, Randy, Kim, Sue, Christopher, Jen
I don't even remember when she was finally diagnosis. As bad as it might sound, I was relieved when she found out that she had RA because that meant she could begin treatment.They put her on methotrexate(MTX) as is common for a first-line, gold standard treatment. Then she switched from the oral to the injectable form because of side effects with the oral form. The degree of stiffness and pain she had concerned me quite a bit. It seemed as if she was having a lot of pain  and stiffness. I was worried because it did not seem as if the MTX was helping. I don't know if it was too low of a dose or that it just was not the right medication for her. 

Unfortunately, we lost Mom Sue on April 11, 1998. At the time I had not been around the family as much because I was working at a health food warehouse. Technically our shift was either from 2pm-10pm or 4:30pm to 12:30am. But, I rarely left before 2am and some mornings it was 6am when I left work. Those hours and the job's physical nature left me with very little time for anything aside from eat, sleep, work. 

Then in Oct. 1998, I went on medical leave from work because I was under a doctor's restriction as to the things  I was allowed to do. There was nothing I could do at my job. So I again had time to spend with Mary. It was probably during this time that we realized that if we combined our strengths and weaknesses, we'd make a healthy person! The things I could do, especially with my hands, were things Mary had trouble doing. She could do things that required standing and walking much easier than I could at the time. 

Then in 1999, Garrin and I made the decision to move to the Myrtle Beach, South Carolina area. After a bad fall on ice in the early 1980s, my sister broke her hip. She never healed properly after the replacement because of sepsis, which meant that they had to removed the hip, wait for the infection to heal and then re-do the hip replacement again. Moving to SC helped her somewhat. In 1999, she was finally able to get the revision done. Since I was not able to go back to work, and Garrin did not have a great job, we made the decision to move. The main reason my sister needed our help was that she had custody of a baby girl not quite 2 yrs old. My sister's daughter was working full time, had recently gotten married, and was taking EMT classes. My sister's youngest son was still in high school, as well as working and in sports after school and her husband was working full time.

As sad as we were to leave Indiana, it was good as well. I began to feel better here. We both found jobs and after living with my sister for about 6 months, we moved into an apartment at the beach. I missed Mary and Kim, as well as the rest of the family, quite a bit. 

Because of our shared pain, Mary and I had grown much closer. No one else could truly understand what were felt like. When either of us were having a hard time because of a flare, we tended to lean on each other and commiserate with each other. There were times we were both in the middle of a flare and it was nice to have the understanding of another person, although I truly wish Mary did not have to deal with all of this. One of us dealing with it is bad enough. 

Feb. 2002 before a Long Strange Daze show

Mary and Wayney
Unfortunately, Mary has an added diagnosis of scleroderma, an autoimmune disease that causes hardening and contraction of the skin and connective tissue. It can be localized or systemic. In addition to this, she has not responded well to any of the traditional DMARDs that she has been on. The result of that is that she has had quick progression of joint damage. The damage was so bad that her hands were very contracted and hurt pretty bad. Her fingers were curled as if she were making a loose fist. She had quite a bit of trouble with her feet as well. The result of this is that she has had bilateral joint replacements in her fingers, bilateral wrist fusions (which was to help provide stability), bilateral foot surgery where they put rods in to straighten her toes and help relieve her pain. Because of her surgeries, 4 in 4 years, none of her doctors would put her on a biological medication. They all used the excuses that they would rather not start her on a biologic just to have to stop it for a surgery. I understand their point, but in the meantime, the joint damage is progressing, leading to a need for additional surgeries. She is now needing her right shoulder either replaced or worked on some how. So no biologic yet. I am hoping she can start one soon in the hopes of slowing the progression of joint damage. I am also concerned because she was told she had to be off of a biologic for 6 months before having a surgery. Everything I have ever read says 4-8 weeks of being off of biologics AFTER surgery. And as for being off of biologics prior to surgery, I've found nothing that recommends being off of a biological medication for 6 months prior to surgery. For many people, it depends on the biologic, the doctor, and when their medication dose is scheduled prior to surgery. But the most conservative time I read was for Remicaide I believe. It was said if possible, schedule surgery so that the patient had 4-6 weeks after surgery before the next infusion was due. So depending on the dosing schedule, that would mean having surgery sometime in the week to two weeks after the last infusion. With Enbrel, Humira, etc, I found no clear answers, but the few thing I did see were in the time-frame of weeks rather than months of being off of the medication. 

Morian family 2011

L to R: Randy, Kim, Vikki, Christopher, Jen, Mary
At Christopher's going away party before he left for Iraq
In all honesty, as much as I hate that Mary has to deal with all of this, I am glad that I was able to help her find out why she was hurting, stiff and swollen. I am glad that I helped her push to be heard and get some help. I almost used to feel guilty that I saw myself in her pain, etc. prior to her diagnosis. But, had I not done so, and she not pushed the doctors to find out what was wrong, who knows how long she might have gone totally untreated? And given how aggressive her joint damage has been, despite treatment, how much worse would it have been?

Mary understands me like almost no one else does. My Mom, who has RA, polymyositis and osteoarthritis also understands us. But with Mary, we have the things we had in common before RA. We're both in our mid-30s, wives and mothers trying to care for our families. We both have a number of hobbies in common. We both have dealt with a lot of the same issues in handling our RA. We share ways we can make doing various things easier. We understand how much it hurts to have family and friends not take us seriously or not believe us when we say we are hurting. We know what it's like to want to do thing and not be able to do them; what it's like to have to change plans at the last minute; what it's like to hear the frustrating comment, "Oh, I have that too, in my pinkie." It's obvious if only one joint is affected, that it's most likely NOT going to be RA since RA is a systemic disease and not confined to joints only. It can affect the heart, the lungs, kidneys, stomach, etc. There is also the fact that RA can cause fevers, generally low-grade; fatigue; depression; body wide pain; and problems with having additional autoimmune diseases.  Many people aren't as blessed as I am to have such a wonderful friend. Even before our shared history of RA, Mary was very understanding and wonderfully accepting of my illness, extremely helpful with my limits, my needs and my pain. She was understanding of the times that I was grumpy and couldn't really control my temper. She loves me for who I am, warts and all. And I love her just as much!

As Christians and children of God, we are sisters in Christ. And having called her parents Mom and Dad and having my Mom be Mom to her, and having our respective children call our parents some form of a name for Grandma and Grandpa, I feel as if I am a member of her family. So in light of that, we have each other listed as "sister" on Facebook. 

Our friendship is such that despite 800 miles separating us, (and with both of us being busy with life and our illnesses) that even if we go awhile without talking, when we finally do talk, it's not as if we've been apart. We pick up where we left off as if we had just been together only moments before. Having a friend like Mary has been great. We support each other through the course of RA. We know with very little explanation how the other person is feeling/ We are unfortunately not together as often as we'd like but I know how much I treasure our time together. 

Spring Break 2011

L to R: Garrin, John sitting on Ramsay's lap, Norma,
Bastian, Mary, Tai, and Wayney in wheelchair.
Taken at Conway Manor Nursing Home.

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