After all the books I have read, I have finally published my own, Surviving Hip Surgery Ten Things You Need to Know. You may visit my author page on Amazon at https://www.amazon.com/author/maryjmann ,
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I need to give you some heartfelt advice that is as close to a warning as I can get. My horrific experience this last year with a hip that was totally worn out put me in a dangerous situation that was as close as I had come to spiraling down the slippery slope to forever.
I have rheumatoid arthritis. Those of us who have an autoimmune disorder understand what I mean when I say I have an overwhelming, incapacitating fatigue when I have a flare. Over the last five years I have learned to slow down when the flare signs start to blossom. To take care. So, this last year as the RA pain plus the pain in my hip increased, I did just that. I slowed down. Unfortunately, it wasn’t a flare that passed with additional Medrol and rest. It was a bone on bone raw joint pain that worsened with each passing day.
I became debilitated. I was weak. I was living in pain. My doc provided OxyContin and tried very hard to get me a surgeon. Eventually, I did have surgery. By that time, I was in a sorry state and ended up in the ER and then in a rehab center where I could have continued my decline.
I didn’t.
The rehab center gave me a chance to fall back and regroup. It gave me a chance to regain my strength. At the center, a few weeks after surgery, I found that the more I moved, the better I became. The better I felt. I spent a lot of time walking the long halls. When I did go home, I missed the long hall walks.
I recovered. I am using a cane. Going to an excellent physical therapy. My hip is happy. Gone is the excruciating pain I had lived with for months. I am lucky.
The outcome would have been better if I had had surgery sooner. However, equal to that sentiment is the idea that I would have been better if I had had a strong physical therapy program for my RA. I would not have been as debilitated as the hip pain increased. I champion the notion of a designated physical therapy for RA. We would be much better off.
In her book Living with Rheumatoid Arthritis (Johns Hopkins University Press), Tammi Shlotzhauser, MD offers a plan of action for various levels of RA wellness. A daily full range of motion is her minimum recommendation. We need to keep moving despite how we are feeling.
Movement lets our bodies know we are still alive and it is our intention to stay that way. A good message to send. My brush with the slippery slope made a believer out of me.
The first doctor to test my vitamin D level was my oncologist. My level was 60 ng/ml. He suggested I lower my supplement amount. I lowered it to 2000U. My next test level was 16 ng/ml. He said,” Just keep doing what you were doing before you changed it.” I raised my supplement to 4000 U and my blood levels have been normal since then. Without a supplement, I was deficient in vitamin D. I have rheumatoid arthritis. Vitamin D deficiency is common in those with RA, type I diabetes and multiple sclerosis.
Additional factors that influence vitamin D levels in those with RA include corticosteroid use. Drugs such as prednisone and Medrol can reduce calcium absorption and impair vitamin D metabolism. Hydroxychloroquine (Plaquenil) is also linked to malabsorption of vitamin D. I am on both drugs and I do take the above supplement.
Those with RA who have a deficiency of vitamin D will have difficulty concentrating, pain may worsen, fatigue and depression increase.
Vitamin D is a hormone involved in bone and calcium metabolism. It is also involved in regulatory activities of the immune system. It is very important to the proper functioning of the body.
Normal blood levels of vitamin D are between 30-40 ng/ml. Deficiency is a level less than 20 ng/ml. Toxic levels are levels greater than 150 ng/ml.
Natural sources are sunlight in the summer and fortified milk. Sardines, wild caught salmon, tofu, orange juice, yogurt and the many food products fortified with vitamin D.
For those with RA, vitamin D in the diet may not be enough. A supplement might be needed. Have your doctor order a blood test for vitamin D and you will quickly know your level.
Many of us who have RA have premonitions before the onset of a flare. For me, I start feeling chilled. Occasionally, I will check my temperature to see if I am coming down with something and my temperature will be 100.4 F. or maybe 99.6 F. It is a Rheumatoid Arthritis temperature. Additionally, my skin becomes itchy over joints. They are not always the same joints. Sometimes it is the knuckles and sometimes it is the wrists.
I am also energetic and have several irons in the fire at the same time. As a flare draws nearer, I start losing my energy reserve. I feel like my battery is draining to a very low level. I knit more, and my baking becomes less creative. I feel duller. I would rather spend more time watching the Great British Bake Off and less time working on research for my current book. I am sinking.
For me, it is time to start a Medrol dose pack and let myself slow down. I will still need to go to the gym or for a walk, but it can be done at half speed. After my hip experience, I have learned that no matter how bad you feel, you must keep your body moving.
I have not noticed any triggers in the five years that my RA has been diagnosed. I am alert to the idea. The best I have is the warning signs of an imminent flare. It gives me the ability to nip the flare in the bud or at least lessen it.
Thank God for my rheumatologist. She has been supportive through thick or thin. Originally, she said she thought I had Polymyalgia Rheumatica because of my age and shoulder involvement. I didn’t have it. I have elderly onset rheumatoid arthritis (EORA) which occurs in those over 60, frequently has an acute onset and includes shoulder involvement. My inflammatory markers at the time were sky high. That was me. I proceeded to become symmetrical and have followed the classic RA pattern. I am also RF negative.
My RA seems to confuse the other doctors that I have seen recently. Some think I am just too old to have RA. Some think because my inflammatory markers are not elevated that my RA is under control. Some think I can’t have RA because I am RF negative. Many otherwise well informed doctors do have outdated information about Rheumatoid Arthritis.
I have sero-negative RA. My RA has never been under control although since my hip replacement I do feel better. My RA is under 5 years old. My feet are becoming deformed, but are still manageable with the proper shoes and inserts. My RA is not under control. Most who have RA are not well controlled or are controlled only for short periods.
When doctors are not well informed, they have difficulty identifying those who do have RA and need to be referred to a rheumatologist for proper treatment. Doctors need a quick update on their RA knowledge.
My holiday is wonderful. I’m enjoying the tree and holiday music. My new hip is a fine one. I’m grateful.
My hip replacement didn’t turn out to be as smooth as I would have expected but my hip joint is fine and all the severe pain I had before the surgery is gone. It is a relief and makes the experience I had well worth the effort. The surgeon said my hip was warn out so I’m very glad he decided to do the surgery.
During Thanksgiving week I overdid walking with the cane and sitting too long. So yesterday during my physical therapy appointment, my therapist and I decided I needed to stay with the walker when I went out and use the cane for practice only at home. My pain had increased and I wasn’t doing as well.
Back to the drawing board. Time to let the inflammation in the hip heal and to follow the rules. And to rest more. I enjoy doing my assigned exercises. Resting more is hard.
I have had two RA flares since surgery. One was in the Rehab center as they had skipped my methotrexate dose. Why? They said because I was at my doctor’s appointment. Odd reason. I was finally given the shot. Amazing what a difference it makes. The second time was at home. My feet were badly inflamed as were my shoulders and wrists and hands. I added the Medrol dose pack. It always helps. I also rub a cannabis ointment into my feet and toes. This is a big help, too.
I am writing a small book on my hip experience. I will publish it in Kindle by the end of the month. I had the good fortune of working with kind, thoughtful people throughout my experience. I had run into one, maybe two unpleasant souls. So overall it was good. Lucky me.
I am hopeful that my summer long saga of pain and futility are drawing to a close. My surgery is two weeks away. I am grateful to Ruth and her practical approach to problems. It is reassuring to me. After all my worry and anxiety, I know I will be fine.
I have only one more item to check off my list. It is an appointment to see my surgeon’s PA. My dentist gave me a pass. I had no oral infection. My primary met with me and did his part. I participated in a two-hour hip class which was informative but also made me anxious. I met with the anesthesiology nurse. I passed all my labs.
My worries
My RA will become a worsening problem as I will be off Medrol and meloxicam starting Sunday. My RA feet are badly affected as are my ankles. My tendons in my legs are also a problem when I walk. My hands, wrists and shoulders are also problematic. After taking the hip class, I became concerned that I wouldn’t be able to do such things as get up on my elbows to do the maneuvering to get up out of bed. I was reassured by the class nurse in a follow-up call that my recovery period would be tailored to meet my needs and all would be well. I am okay with it as much as I can be.
I am a planner. It isn’t always a good thing. I realized that although sleeping on the affected hip worked for me, after surgery I would not be sleeping on my incision. So, I decided to practice sleeping on the opposite side, the unaffected side. It was a bad decision. My pain quadrupled. It was unbearable. It was so bad that when I laid down I couldn’t get up to brush my teeth and put my nightgown on. I slept in my clothes with my socks on. So, after spending two days in pain beyond belief, I went back to sleeping on my bad hip. My pain level is much better.
The walker is another issue. My RA Doc ordered a walker when she saw me limping down the hall. It is a great walker. It has helped me stay mobile. It has a bench that is handy for carrying things like coffee or laundry. I enjoy my walker for the freedom it has given me. After the Hip class, I realized that I would need a different walker. Oh no, I thought, one more learning experience. So, I bought the correct walker and I practiced with it. There was no place on it to carry my laundry or to carry my coffee. So, I decided to do what I had been told by many health care professionals and Ruth to do. And that is to work with today only. The rest will take care of itself. I am using my favorite walker and am sleeping peacefully on my bad hip. I am good with that. My exercise into preparedness was futile.
My last worry is about going home. I am expecting that I will be discharged from the hospital three days after my total hip replacement surgery. I have prepared the home front as best I can. My son, who is also handicapped, will help me the best he can. It may be possible to have home healthcare or it may be possible to extend rehab for a few days. But it is all maybe. Not for someone who is a planner. I am into month five with this problem. I’ll be glad when it’s all over. So will Ruth.
I wonder how many of us are walking around with replacement parts. Joint replacement has become common and it is successful surgery. I have several friends who have both knees replaced or both hips replaced and they are fine with it. And now, I am about ready to embark on my first joint replacement.
My left hip will be first on the chopping block. This is a bad visualization. I am trying hard not to think about what the surgeon will be doing. It is scary and gruesome. A Frankenstein thing. Instead, I am focusing on the bionic woman thought. I will be in much better condition once I complete the rehab process. I will have a fabulous new joint. Won’t I be lucky? I will.
I have spent the summer in extreme pain. My doc had a tough time identifying my hip issue. After all, my hip had good range of motion without pain. An MRI revealed my hip deteriorating badly plus a bad labral tear with pieces loose in the joint. My pain progressed from mild to excruciating. At first it was random and then it was whenever I moved plus random.
Putting on my bra pulled on the hip in some bizarre way provoking extreme pain. Weird, but true. Dressing was a major effort much like the RA challenges of dressing. When I was at my worst with RA, dressing was an exhausting, painful process. Now I have the same issues with my hip.
Next, I was sent to an orthopedic surgeon. The surgeon was chosen by my doc because she thought I would have the surgery quicker than going to the alternative. Wrong. I couldn’t get an appointment sooner than six weeks out. Six more weeks of pain. When the day arrived, my appointment was brief. He sent me to have a hip injection which was scheduled in another five weeks. What this doctor said made no sense to me. I asked for a second opinion. The next surgeon’s appointment was scheduled in another six weeks. I have been on Norco or oxycontin the whole time.
I had the hip injection. It was an easy procedure. Efficient and painless. Did not help. Expensive. Finally, I arrive at my new orthopedic doctor’s appointment. I was fearful that I was going to be left in severe pain for the rest of my life. He introduced himself using his first name. Instantly likable. He simply said to me that I needed a hip replacement. I was so relieved that I had no questions. I was basking in total relief. A solution at last.
A friend asked me why it takes so long for people to have hip replacements. There are two big reasons. First there seems to be a shortage of orthopedic surgeons so it takes forever to get appointments. Second most insurance companies require patients to have a hip injection or to try physical therapy first. All of this takes a great deal of time. Injections and PT are not going to solve the problem of a worn out joint so why they are required is questionable and a waste of time.
My surgery is scheduled for October fifth. Now that the surgery has been approved, there is a lot to do. I was sent a check list. I have a two-hour hip class scheduled. I had a dental appointment Tuesday to be sure my mouth is clear of infection. I have appointments with my primary, nurse anesthetist, and doctor’s PA.
I have been on Actemra for the last two months. It is helping but will have to be stopped until sometime after the surgery. Meloxicam and Medrol will also have to be stopped. I will stay on the methotrexate and Plaquenil.
Wish me luck. My concern is how this surgery will affect my RA and maybe how the RA will influence the outcome of surgery. My body is in a constant state of inflammation. Although the severity of it varies, it is always there. Tough on the body.
On the brighter side, I do believe in the helpfulness of modern medicine. With all its weaknesses, we are much healthier because of it. So, as I move closer to my first joint replacement, I appreciate the fact that my joint pain will be gone and I will have a healthy useable hip. First steps on the way to a bionic body. I wish my RA joints had it so lucky.
By now most of us know that our intestinal system is home to trillions of bacteria busy doing their job populating their ecosystem in the lining of out intestines. Collectively they are called the gut microbiome or gut flora. The beneficial bacteria in the gut have names that we see on the list of ingredients in a good yogurt such as lactobacillus acidophilus. These bacteria help maintain a consistent environment, protect the body from foreign invaders, communicate with the immune system and the brain.
The gut microbiome is complex and gut imbalances have been implicated in the development of RA as in other inflammatory diseases. “Larger-than-normal populations of specific gut bacteria may trigger the development of diseases like rheumatoid arthritis and possibly fuel disease progression in people genetically predisposed to this crippling and confounding condition,” according to Mayo Clinic Researchers.
An imbalance in the gut microbiome coupled with a genetic predisposition to RA may be the initiating factor in the RA disease process. There is a lot of research being done. Using probiotics medically as therapy for RA is a ways off, but a probiotic supplement is a reality for today.
Fermented foods are excellent for the intestinal flora. Fresh sauerkraut, good quality yogurt, kefir, buttermilk, sour pickles, pickled beets are good examples. Commercial preparations such as, NOW’s Probiotic-10 25 Billion is what I use. I may not be able to undo my RA, but I should be able to help my body by improving the microbiome in my intestinal flora.
My RA started in my feet. About 20% of patients are introduced to RA via painful feet and about 95% of RA patients eventually do have feet involvement. RA struck my poor feet first. Diagnosis was slow as my primary doc, an internist, later said I was too old to have RA and that the pulses in my feet were strong so my feet were fine.
Once I was diagnosed. Methotrexate (MTX) was my first RA drug. The dose was gradually increased until I reached the max of 25 mg/week. I tolerated the nausea and diarrhea which eventually passed. MTX helped me but by this time my feet were in a lot of pain and I walked with great difficulty.
I was sent to a podiatrist who declared right off the bat that he didn’t do foot surgery for RA. Fine, I thought. I had read about the horrors of RA foot surgery and I wanted none of it. I did need to know what would help.
He did three things for me. He ordered a series of weight bearing feet x-rays that were done during my appointment. I already had joint changes. Second he said I need to go to New Balance and buy shoes. Three I needed orthotics bought at the same place.
I bought two pairs of shoes, one called the nurses shoe and the other an excellent walking shoe. I had the clerk remove the inserts and replace them with the motion control ProThotics. This was one of the best things that I did for my health. My feet were happy, supported and comfortable. It was expensive but well worth it.
marysarthritis.com 