BRACED FOR CHANGE
One of our members invites you to walk a mile in her shoes:
Q: Current Age?
A: I am now 35.
Q: Age of Onset or start of symptoms?
A: I was 6 or 7, and my journey began with of all things a trigger finger and a ganglion cyst, as well as horrible pain in my legs at night that would wake me up and cause me to scream. The first time it happened, my Mom thought that I’d had a bad dream but then I complained about my legs hurting. I’d have them drawn up toward my torso and be unable to straighten them. She would have to massage my knees and thigh muscles to get them to relax and straighten out so that I could go back to sleep. She took me to our local doctor who told her I was having “growing pains” (what kid doesn’t hear that when they are first experiencing symptoms?). She disagree and took me to another doctor who refused to do anything more than examine me. He was not willing to treat me because he felt I either had JRA or a type of muscular dystrophy. So he referred me to Riley Hospital for Children in Indianapolis, IN. I was blessed in being sent there. Dr Murray H Passo diagnosed me after I spent a week in the hospital having a battery of tests. He was my pediatric rheumatologist until moving away. He now works at MUSC in Charleston, SC and I would try to get an appointment with him if my son’s problems with pain worsen. I even contacted Dr Passo after the pediatric rheumatologist I took my son to, told me I was “projecting [my] pain onto [my]son”. He also tried to tell me that my son’s negative lab-work meant that nothing was wrong with him, a fact that caused me to laugh at him, then respond that I’ve been sero-negative for more than 20 years.
Q: Age of Diagnosis?
A: I was diagnosed in 1984 at the age of 7; I was one of the lucky few kids who got a relatively quick diagnosis, despite being sero-negative.
Q: Where are you located?
A: I live in Myrtle Beach, SC
Q: What is your profession?
A: While I do not work for a salary due to disability, I am a wife and mother. I also volunteer as a support group moderator and news person, health advocate, health information provider. Some of my other “jobs” are occasional blogger, and one of my favorites, a ministry group volunteer and occasional Bible study leader.
Q: What are your Medical Conditions or diagnoses?
A: I have been diagnosed with: sero-negative poly-articular juvenile rheumatoid arthritis (before the term JIA came about), fibromyalgia, Sjogren’s Syndrome, osteoarthritis, osteoporosis, facet joint arthritis, chronic lower back pain, chronic myofascial pain syndrome, scoliosis, bilateral ankle contractures, peripheral neuropathy, post-herpetic neuralgia, overactive bladder, urge & stress incontinence, and migraines. I believe I’ve listed all of them.
Q: What are your hobbies?
A: The hobbies I enjoy(in no particular order) are: reading, being online, learning about medical issues, health advocacy, dabbling at writing when inspired, working with a ministry group (at the nursing home where I lived for 2 yrs while learning to walk again), playing board and trivia games with my family, cooking, cuddling with my fur-kids, genealogy, listening to music, watching the History channel, hanging out with my family, and taking spontaneous drives throughout the countryside with my family.
Q: What is one thing your doctor didn’t tell you about your Autoimmune Arthritis that you wish they had?
A: I wish they had told me more of the secondary conditions to my JRA rather than just blaming everything on the JRA. In reading my past records, I found that I showed signs of osteopenia at the age of 7 and full blown osteoporosis by the time I was 9. They never discussed that with my Mom and I so it could be treated.
Q: If you could tell your past self something before diagnosis, what would it be?
A: There will be times that many people (even doctors) will tell you that you cannot do things. Use that as motivation to prove them wrong! I actually had this experience twice. Once as a child and more recently in 2009. As a child, I was told that by the time I was around 16 that, I’d never walk again, I’d be on medications for life, I’d never marry or have children, and I’d never work. I began working as many hours as I legally could when I was 16 and then worked full-time as soon as I turned 18. I had been off of medications (it’s not like they were treating me aggressively, since all they had me on was ibuprofen and then naproxen) since I was 14 or so. I never used a wheelchair until I was 24 or 25 while I was pregnant and then when I was 32 I began using it full-time because I fell and could not walk. Now that I am able to walk, I only rarely use my wheelchair for something other than a desk chair. I was off of medications until I was 25 or so. But, I have a MUCH better quality of life with medications than without them. I’ve been married to the most wonderful man in the world for 17 years now and have an awesome 10 year old son. Both of them are so understanding of my limitations and are so very helpful. They also encourage me to do anything I set my mind on, yet they never criticize me if I try and cannot do something. Thankfully, they don’t view me as lazy either during the times I cannot do the things I’d like to do. Even more recently, in 2009, the doctors told me after my fall and the long illness that followed that I’d not walk again, and I’d not live outside of a hospital or nursing home again. I was determined to do as much as I possibly could do and was also determined that even if I didn’t walk again, I’d still be productive and have purpose, even if it was from a nursing home or hospital. After moving to the nursing home, it took about 6 months before I felt well enough to ask WHY I had not been started on physical therapy, one of the reasons I was there. The PT head somehow thought I said I did NOT want PT, something neither my husband nor I ever recall me saying during my evaluation, which is the only time I recall discussing things with the head of the PT dept. So he started my PT by putting me in a group for exercises. No one (including me) thought that it might be best if I didn’t try to keep up with the group since it had been almost 2 years since I’d been meaningfully active. I ended up doing 5-6 exercises and at least 20 and sometimes 40 reps per exercise. That was a HUGE mistake that ended up with me in bed for 3 weeks unable to move on my own easily. Needless to say, I asked for restorative therapy which came to my room and did gentle stretching and ROM exercises until I was better able to tolerate exercises. I then asked for a new therapist. That was one of the single best moves I made! My new PT met with me the next afternoon, which happened to be my birthday, and ended up giving me the gift of freedom, My son, then 8, had taught me how to get in and out of my hospital bed without help from anyone. My PT watched me do so and changed the order that someone be in the room watching me when I transferred, giving me the freedom to get in and out of bed without waiting for someone to come into my room to watch me. I then began working with him on Jan 5, 2011. I’d been told first I would likely never walk again. Then the hospital PT said IF I ever walked again, it would take 2 to 3 YEARS of intense daily physical therapy. I started working with my PT 3 days a week for about an hour a day. We did stretches, some light weights, range of motion exercises, just gentle things that didn’t push me so hard I began to flare. My PT knew when to push and when to back off. He could read my pain level and know when to stop something and when I could stand the pain and it was best to push through it. By Mar 29, 2011, I was ready to stand. The first time I stood, I only stood for a few minutes. But it was the first time my legs had supported my own weight since Dec 2008, so even a few minutes was excellent. By Apr 18, 2011 I was ready to take my first steps. My son was on spring break and had come to the nursing home to spend the day with me. He especially wanted to see my PT. So I was thrilled when my PT decided that was the day I was to take my first steps. He even recruited my son to help, which made it all the more special. He had my son follow us with my wheelchair as he stood in front of me to support me. I think action in the room stopped as I took those first steps. I know all of the other therapists were excited, as were my son and I. I am grateful my PT chose that day to begin walking. So yet again, I did something the doctors the doctors said I would not do. And then on Nov 20, 2011 I moved out of the nursing home and back into my own home. It’s not been all easy but neither has it been as hard as they predicted. I think I used their predictions as something to prove wrong which gave me more determination. And in all honesty, that may have been why the doctors made those predictions.
Q: What would you like to tell others newly diagnosed with Autoimmune Arthritis?
A: Learn everything you can from reputable sources, find others in a similar situation to give you support. Know that doctors can be horrible or excellent and everything in between. Find a doctor you can work with as a PARTNER in your healthcare. Involve yourself in ALL decisions since it is YOUR body. Find a doctor who listens and doesn’t dismiss what you say. Your doctor doesn’t need to be the one to hold your hand and give you the emotional support you may need but they do need to respect you just as you need to be able to trust and respect them. When it comes to treatment choices, find out what the options are and ask for a bit of time to decide and in that time, research the options (again using reputable resources). Then make your decision after weighing the pros and cons of all of the choices. If you truly have no preference, talk it over with the doctor and find out their opinion. Knowledge is power. Arm yourself with as much knowledge as you can.
Q: How would you describe your personal style?
A: My style? Hmm I’d have to say I’d call it *gimp-friendly comfortable. All of my clothes I wear regularly are soft, loose, comfortable, and mostly dark in color because I tend to spill things on my clothes and dark clothes hide stains better. Let’s put it this way, I was in bed today and had taken a nap. I woke up when my hubby came home. I got myself a drink of Coke and was holding the bottle with the cap on it but not actually screwed on. I ended up starting to doze again and as my hand relaxed, the bottle tipped and I ended up needing to change pants and wash the sheet and pants. Sad huh? I mostly wear sweats and PJ pants, especially flannel pants. I prefer drawstring to elastic because sometimes elastic pinches. If I have to go out somewhere other than the store or the doctor’s office, I’ll throw on jeans and a t-shirt. For the doctor’s office, especially my pain doctor when I am having some type of procedure done, I have to wear comfortable clothes that are loose, comfortable and easy for him to arrange to get at the area he is working on but also maintain some modesty. I rarely wear make up, or nail polish or do anything other than shampoo and condition my hair then run a comb through it. I may paint my nails once in awhile but then it begins to chip and I end up letting it look awful until it bugs me enough to get out the nail polish remover and take care of it. I do color my hair on occasion because I’ve had gray hair since I was 16. It’s been about 6 months since I last had it colored. It was a disappointment because we didn’t leave the color on long enough. It was supposed to be purple but ended up a light auburn. Thankfully I liked it, it IS the color I normally choose. But, I was a bit sad it wasn’t purple. I’ll do it again someday! Maybe sooner rather than later. Who knows!
* I do not use the word gimp to offend anyone. I just tend to refer to myself as a gimp at times. It is something I laugh at. I have been told I have a twisted sense of humor.
Q: What part of dealing with your Autoimmune Arthritis has made the biggest impact on you?
A: I was mostly not medicated when I was first diagnosed, which was at a time when early aggressive treatment was NOT the norm. I wish now I’d have been given a DMARD to have gotten the JRA under control. But, at that time, only kids with severe cases were treated aggressively and I was not a severe case. We know now how important early aggressive treatment is. It is better to prevent damage rather than attempt to treat damage. I was only given ibuprofen when it was a study drug for kids with JRA. I then switched to naproxen when it was a study drug as well. But I was NEVER given a DMARD until I was 25 and had given birth to my son and the typical post-delivery flare hit a month later with a vengeance.
Q: Favorite quote?
A: There are way too many for me to choose a single favorite. I know that most of my favorites are Bible verses. Sorry there are so many there. But, these verses have meant a LOT to me in the past 3 years during my hospital and nursing home stay. These verses kept coming up to me in one way or another. Usually various people quoting them or using them in a resource. Most especially:
Rom. 8:18 “For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us”;
2 Cor. 1:3-7 “3 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, 4 who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. 5 For as the sufferings of Christ abound in us, so our consolation also abounds through Christ. 6 Now if we are afflicted, it is for your consolation and salvation, which is effective for enduring the same sufferings which we also suffer. Or if we are comforted, it is for your consolation and salvation. 7 And our hope for you is steadfast, because we know that as you are partakers of the sufferings, so also you will partake of the consolation.”;
2 Cor. 12:9-10 “9 And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. “;
Phil 4:4-13 “4 Rejoice in the Lord always. Again I will say, rejoice! 5 Let your gentleness be known to all men. The Lord is at hand. 6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. 8 Finally, brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy–meditate on these things. 9 The things which you learned and received and heard and saw in me, these do, and the God of peace will be with you. 10 But I rejoiced in the Lord greatly that now at last your care for me has flourished again; though you surely did care, but you lacked opportunity. 11 Not that I speak in regard to need, for I have learned in whatever state I am, to be content: 12 I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. 13 I can do all things through Christ who strengthens me.”;
Heb. 11:1 “Now faith is the substance of things hoped for, the evidence of things not seen.”;
James 1:2-4 “2 My brethren, count it all joy when you fall into various trials, 3 knowing that the testing of your faith produces patience. 4 But let patience have its perfect work, that you may be perfect and complete, lacking nothing”;
1 Pet. 1:6-7 “6 In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, 7 that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ,”;
1 Pet. 4:12-13 “12 Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; 13 but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy.”;
Psalm 139:13-17 “13 For You formed my inward parts; You covered me in my mother’s womb. 14 I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well. 15 My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth. 16 Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them. 17 How precious also are Your thoughts to me, O God! How great is the sum of them!”;
Isaiah 40:28-31 ”28 Have you not known? Have you not heard? The everlasting God, the Lord, The Creator of the ends of the earth, Neither faints nor is weary. His understanding is unsearchable. 29 He gives power to the weak, And to those who have no might He increases strength. 30 Even the youths shall faint and be weary, And the young men shall utterly fall, 31 But those who wait on the Lord Shall renew their strength; They shall mount up with wings like eagles, They shall run and not be weary, They shall walk and not faint.”;
Jeremiah 29:11 “11 For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope.”;
Rom. 8:28 “28 And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”;
Rom. 8:37-39 “37 Yet in all these things we are more than conquerors through Him who loved us. 38 For I am persuaded that neither death nor life, nor angels nor principalities nor powers, nor things present nor things to come, 39 nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord.”
The last two somewhat go together. They were paired in the hymnal that the nursing home used for their church services. The second one is not a Bible verse but is part of a hymn that held a lot of meaning for me. It is from “Victory in Jesus” and it was the song that ended the church service about an hour before I had PT the day I first walked after 3 years of not being able to walk. The next day, I was leading a devotion for the Alzheimer’s/dementia unit at the nursing home. The activity leader chose to end the devotion time with “Victory in Jesus”, not knowing about the previous day. I almost burst into tears when it hit me that the day before, I’d experienced the effects of healing in that I regained my ability to walk. I may not be totally healed, but I fully believe that God gave me a healing touch and the things that were not healed, He has a purpose for not healing those items. He has some reason to leave me with the challenges I have. I can use those challenges to help others, to be more compassionate, and to reflect God’s mercy and grace in my life.
1 Cor. 15:57 “But thanks be to God, who gives us the victory through our Lord Jesus Christ.”;
The second verse begins, “I heard about His / Healing, / Of His cleansing pow’r / Revealing / How He made the lame / To walk again /…”
Q: What are three random things about yourself that others may not know?
A: Despite my openness on the web regarding my health issues, I am a VERY shy person. I don’t like speaking in front of a crowd of people, or being the center of attention. But I can hide it and get around it.
While I can communicate through writing fairly well, I am not so good at getting my feelings out verbally.
I wish I had the ability to be creative with my hands and could knit or something. But given that my hands would NOT rebel at me trying those things and that I am not as patient as I could be, it may also drive me crazy if I tried. Sadly, my Mom is an expert knitter and tried to teach me to knit in the past. I think I may have just been too young, and not interested at the time. I doubt that I have the hand-eye coordination necessary to make it happen.
Thank you for taking a walk in my shoes!
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