AP Diary 2

The following is to record my experience with an antibiotic protocol in an attempt to manage psoriatic arthritis. This is my second antibiotic protocol. The first was nine months long and was very successful. Tough at first, but worth it. The approach was a very heavy hitting one. As my doctor said, “Going in guns blazing!” I experienced roughly a year and a half without medication following the protocol and was grateful for every day. The disease is rumbling again and I’d like to attempt to keep the party from getting out of control. This time I am going in with a different antibiotic and I am taking it low and slow with the dosage. My choice. My doctor is awesome.

Day 1 (October 18, 2012)

Had a choice to take minocycline at night on empty stomach or morning. Chose evening because don’t want to feel limited in morning as to when I can eat. Taking two hours away from food. Awoke the next morning after sleeping well (thank God!), put my feet on the ground and was grateful to discover they were not screaming at me. Yay! Crazy two week long headache still there, but no new notable symptoms. BM normal.

Day 2 (October 19, 2012)

Feels like walking through mud all day. Still able to function and accomplish things I normally would but have to really push myself physically. It’s a flu like feeling. Feeling pins and needles in gut. Ugh. BM normal. Headache is gone!!!!! It was starting to feel permanent. What a relief!

Day 3 (October 20, 2012)

More pins and needles in gut. I try not to think about what is being done to my gut with antibiotics and replenish it with good bacteria through food and supplements. Have no appetite. Just eating because I want to stay ahead of the die off process the best I can. Eating lots of fish, nuts, raw and steamed veggies, raw fruit, smoothies with coconut milk, juicing kale from garden with apple and lemon. Able to eat broccoli, beans and various lettuce raw out of garden. Body feels weak. Running up stairs in house makes muscles tingle with fatigue. Muscles in back very painful all of sudden. Back hurts all day. This hasn’t been the case for a long time.

Day 4 (October 21, 2012)

Darn those pins and needles and achey muscles in back. More intense. Makes me a little grumpy. Ok, maybe a lot. I don’t know. Would have to ask my family. Always trying to send my body positive messages and keep a happy face. Doesn’t always happen. Feeling like you have food poisoning all day for a few days is no picnic. Force feeding myself at times. Stomach growls for food, but I have no interest in eating. Always aware of my diet and making sure I am getting good amounts of healthy protein and fats and live foods and tons of water. Nothing has flared up on me. Ankle has been bothering me less. And I haven’t broken out in a rash from medication. Phew.

Day 5 (October 22, 2012)

Fatigued. Not eating a lot, but eating constantly throughout day. BMs have continued to be perfectly normal.

Day 6 (October 23, 2012)

A little more pep in my step. Pins and needles are less and more tolerable. What is with my back? It hurts. Doing a lot of stretching. Going to book a medical massage. Keeping a close eye on my baby toe. It is my little barometer of what is going on right now.

Day 7 (October 24, 2012)

Forgot to take my med before falling asleep last night. Oops. One draw back to taking it at night is by the time I lay down to read, my brain has checked out and it’s easy to forget my med. Will put it on bedside table tonight. Had to take first thing this morning. Will be taking evening dose same day. Interested to see if my body gets a little more ticked off with more in the system. One thing I have come to learn is that despite the fighter spirit I feel within, my body is one of the most fragile little tea cups there is. The two don’t line up and it is easy to get frustrated about this at times. Pins and needles have been quite tolerable and significantly less. BM is awesome. I’m not bragging or anything. 🙂

Day 8 (October 25, 2012)

Happy Birthday to me and geez my body feels like junk. Feel good mentally. I feel blessed. More med in system and/or arrival of period has tipped the scales. Both ankles and thumb really ticked off when I woke up. I am about to pass out while little man is asleep. I feel soooo tired. First year of my life that I’m not having a birthday cake since not eating grains. Going to splurge and make my own ice cream though. Cutting myself some slack with sugar and dairy for b-day. Will accompany it with digestive enzymes and good food.

Day 9 (October 26, 2012)

Period making me feel like junk. Prickles in stomach not too bad but always there. Appetite has increased a bit. Feel better after eating. (Husband took me out for Indian food for my birthday. Eating out is always a risk with my body. I took liberty with my body/diet to celebrate birthday–and I survived! Woohhoo!) Joints have maintained their status quo. Back and neck have been unusually painful since starting back on antibiotic protocol. Would seem to me that questions I had as to whether back and neck are separate issues is answered by the fact that they have responded to antibiotic protocol with a bit of revolting. Spine would seem to be very much a part of the big picture.

Day 10-13 (October 27-30, 2012)

The pins and needles in gut seem to be gone. Appetite is good. I took more liberty with diet for b-day and anniversary than should have. Paid for it the next morning. Felt achey all over.

Day 14-17 (October 31-November 3, 2012)

Gut feels fine. Fabulous appetite. Trying to eat lots of protein to aid recovery. This round of antibiotics feels different. My body aches everywhere. My joints don’t seem too upset. But my muscles feel bruised all over. My back hurts all the time since starting back with AP. I realize now how good things were. Baby toe is crazy painful. Poor thing does not like being put in shoe. Very tired this past week. Doing crazy things like climbing 12 ft. ladders and carrying paintings up and down it, and moving son’s queen sized bed with brute force across carpet by myself–because I am stubborn, determined and stupid about getting things around house done. Brings me comfort, joy and peace and to my surroundings when done. But it’s the getting it done that I probably shouldn’t do. You know what they say about using it or losing it–that part makes me stubborn about giving up the use of my body. I don’t want to lose anything else. It’s crazy these days, my muscles hurt so badly all over that my arm started to feel achingly sore after stirring scrambled eggs one morning. I am remembering–the detoxing is a crummy experience. I sigh out loud way too much. I don’t mean to. I get sick of hearing myself. You have to hope that it will lead to feeling better. Something is definitely at work since starting AP.

Day 18-34 (November 4-November 20, 2012)

The past two weeks have been significantly better than the two before. I am a month into this protocol. Not feeling too bad. These past two weeks have shown an improvement in my energy level and the pain level in my muscles. That was pure crazy town. I hurt everywhere it seemed and was so tired. Definitely have more pep in my step. Right baby toe is still not looking pretty. Right ankle is swollen. Had second medical massage today. It. hurt. And now I really hurt. He said there is a lot of work to be done. My muscles are doing things they are not supposed to he said. I have tiger balm slathered all over back thanks to hubs and I’m on a heating pad. I told hubs that it’s like have chips and spicy salsa and then a bowl of hot soup. We had out-of-town guest, got sloppy with diet and allowed sugar and oats and restaurant food (Thai coconut soup, avocado salad, omelet, mmmmm) in the back door the past couple days. Skin and body had a freak attack of sorts. Fortunately, recovery is fairly quick if I remove the problems. Saw rheumatologist for two-week follow-up on this protocol. Went over latest blood labs and everything looked great. He wants to see me four weeks from that appointment. I was seeing him every three months to check in prior to starting this protocol. I am still experiencing increased appetite. I try to load up on protein to curb appetite and my body just wants more and more food. It audibly growls and causes discomfort if I do not keep eating throughout day. So funny, it is growling now. 🙂 I often lay in bed past ten and fantasize about what I am going to make for breakfast. I am enjoying the increased appetite. Just takes more work to keep my body satisfied. Making trip up north for Thanksgiving. Praying the stress of travel is handled well by my body.

Day ?? (May 16, 2013)

Seven months on AP. It has been so long since my last entry because when month two on AP rolled around, I was in a tremendous amount of pain. I didn’t check on other autoimmune bloggers and I didn’t record my own pain because at the end of the day, there was no joy in doing so. And when you hurt, you need joy. It’s a very isolating approach. It’s not healthy.

And then I had to remind myself that things can get a lot worse with this approach before they get better. It’s a good sign if it does because it means you are killing something inside of you that wants to live and destroy you little by little, or sometimes a lot all at once without warning. I got scared. I was angry. I was sad. I cried. I mourned the loss of my health again. Did I mention I was angry? I work hard at trying to maintain some semblance of my health and when it feels like it doesn’t amount to anything some days, it’s enough to really tick you off. And then things came around and the pain lessened little by little and I accepted each day that I didn’t think about the pain all day as the sweetest gift I could ever be given. Because it is.

Where am I now? I’m in a lot of pain. A lot. It started coming on maybe three or four weeks ago. And I’m scared again because it’s not going away and it’s ALL OVER and I’m way past the initial period when it gets worse before it gets better. There are days when my muscles hurt all over (as in it hurts to even lift my arm above my head) and I am sooooo tired in addition to the joint pain. When this happens, I immediately examine my diet–where have I slipped, where have I been sloppy? I examine how I’m coping with my stress level. Let’s just say that my stress level is a chart topper these days. Can’t change my circumstances, can only control how I respond.

Here is what is causing me to think about biologic drugs: Neck pain. Left thumb is swollen. Hurts to bend and write with a pen. Left collar-bone pain is new and hurts so bad it makes me cry sometimes when I am driving. Left wrist bone is very painful. If I barely bump it on something four letter words spring to my lips. Tail bone pain is new. When I sit, I have to adjust how I sit to avoid pain. Right knee very painful. Left ankle and left baby toe very painful. My back…oh my back. Makes me the crankiest of all. I am experiencing a localized pain in my intestines that is nothing shy of intensely painful. No surprise. I have been taking antibiotics for seven months. Rheumatologist suggested colonoscopy. Think I’ll be putting that one off.  My periods are more painful. Ovulation period is painful now. I strongly feel link between my hormones and my overall pain. I never blogged about it, but over a year and a half ago, I went to my gynecologist because I experienced a period that had me on the floor groaning in pain, sobbing in fear and feeling like I was 100% in labor. It caused me to throw up and pass large clots of blood like I had never seen before. She did an ultrasound and discovered that one of my ovaries was very enlarged. And let me tell you that ultrasound hurt because it involved a wand being inserted. She was not sure what to make of it and consulted with the other doctors in the practice. They too were stumped and the only thing she threw at me was ovarian cancer. Seriously? She wanted to do a follow-up ultrasound with me after my next period. I haven’t been back. And for the first time in my life, I have avoided my annual exam. Terrible, I know.

I am also not sleeping well for nights on end even though I am beyond tired at the end of each day and I am waking up in the middle of the night. This is new. Typically, I don’t sleep well for about two days prior to my period. But this is going on and on. I am bummed just writing this all down. I have been riding it out. Waiting to see if the storm will subside or pick up strength. It hasn’t been easy. I don’t want to talk about my pain to anyone outside my family because I’m so tired of being judged. I told my husband that I just needed him to know that things are really bad–because I can do a bang up job of looking well. And if I don’t tell someone I might explode. I hate what it does to him when he knows how bad I hurt. He feels so helpless and it frustrates him. I hate the way it makes me feel like less of a capable woman. I hate that he wants to see me feel better and the relief hasn’t come. I hate that he prays every day for “relief for mommy” because it makes me feel weak. I’m so sad now which is unfortunate because it only validates why I have avoided writing all of this down. I am writing because it’s 1 AM and I can’t sleep for the life of me. I was up until 2 AM last night. How I made it through the day with my three-year old, picked up the other three kids from school, took them to the dentist, made dinner, cleaned the kitchen and made sure all four boys went to bed on time is truly beyond my comprehension. God gives me wings when I need it most….

May 20, 2013

When my pain takes on a new level, I usually shed some tears of frustration and anger, then dust myself off with renewed vigor to get through this time in my life. I adopt the new pain as my new normal and carry on doing the best I can to be proactive about my health physically and mentally. That is, until I visibly see something new swell. Then I lose it a little. My left wrist has ballooned up. First time it has visually shown the pain that lies beneath it.

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Right wrist appearing normal

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Left wrist looking rather upset. Hurts to move, hurts to lift anything. Being left-handed doesn’t help.

Because of the increased inflammation all over, I have turned to The Road Back website for guidance. I am feeling reassured of the antibiotic approach and realize that I need to do something to help my body get the inflammation under control to aid the antibiotics. Taken from their site:

“Minocycline alone will not stop joint damage, at least not while there’s active inflammation, and should not be viewed as a standalone treatment. Dr. Brown did not use antibiotics alone; he also used an NSAID to help control the inflammation. Sometimes he even used a corticosteroid such as prednisone or dexamethasone.”

“Anti-inflammatories should be used when indicated to prevent the inflammation from creating a barrier which the antibiotic cannot penetrate.”

“Hormone imbalances can lead to increased inflammation and should be evaluated.”

“So, you see, it’s not a case of choosing either an antibiotic protocol or conventional treatment. You can (and probably should) do both.”

Based on the fact that my periods have been more painful and I am not sleeping well, I think it would be wise of me to have a look at my hormone levels before making any quick decisions about my protocol.

June 6, 2013

I saw my rheumatologist for a follow-up. I hadn’t seen him in three months. He saw a new side of me. I waited exactly 2 1/2 hours to see him. I was in a good deal of pain from sitting in uncomfortable chairs that long and all I could think about was my four boys at home while my husband worked from home. When my doctor came in, I was agitated, but still pleasant. Honestly, I think the girls that work there put other people ahead of me or made a mistake. Something was definitely fishy. After I was called, the nurse said nothing to me. She didn’t read out my weight after I stepped on the scale. When she took me to the “holding room” and took my vitals,  didn’t say anything. Shouldn’t they at least offer us our numbers? They do mean something to me.

Doctor came in, asked how I was doing and after I mentioned my long wait, I told him I wasn’t doing so hot. He said, “That’s too bad because I was just going to tell you that you look great.” He’s a sweet doc. He said that indeed there was a lot of swelling. Wrist was a concern. He helped me to realize that the tendons in various areas are what are swollen. He also had a way of calming me down. Asked him about a NSAID (which I have avoided like a cancer until now) and he wrote a scrip for meloxicam. He said he is willing to let me try antibiotic route for a year. In my effort to reduce swelling so the antibiotics have a chance to work, I started taking the meloxicam that evening. That was over week ago. I discovered I already had a full bottle of it that I had never taken from a couple of years ago in my cupboard. When I woke up the next morning, I knew my pain level had definitely been altered. Definitely a reduction in pain. However, swelling has not diminished still. Wrist is still a balloon and hurts, as is left thumb. Back, neck, collarbone, knee, tail bone, ankle and toes still hurt, but definitely less–except for maybe toes on left feet. I am trying not to think about what the NSAID is doing to my gut and appreciate the days with less pain. Doc wants me to get blood work two weeks from starting meloxicam to make sure liver and kidneys doing ok.

Had testing done that revealed I am battling a virus, bacteria and am heavily affected by a slew of chemicals. You can do everything in your power to remove and avoid toxins and it still isn’t enough. Grrrr. It is what we eat and breath every day whether we want to or not. I reacted to things like chlorine (I avoid pools, have a whole house chlorine water filtration system), dyes, preservatives, formaldehyde, dry cleaning chemicals (I don’t dry clean anything), and plenty more. No one can tell me that the rise in cancers and autism and diseases that affect our brains and our bodies, both infant and old does not have to do with the state of our food system and the slew of chemicals in beauty and cleaning products, the chemicals in our air, walls, carpeting, furniture, beds, pillows, cookware, etc., etc., etc. It makes me ill just thinking about it. Aaaahh, my poor children. They must hear, “that’s not good for you or that’s toxic” multiple times every week. My four-year old asks throughout the day lately when he is about to eat, “does this help me grow?”

June 12, 2013

Oh, sweet Jesus. Can I just say that I am in a lot of pain. My lower back right at the hip is out. of. control. I’m wincing and any movement hurts. Left foot is seriously under attack. The baby toe is swollen and it is something else trying to walk on my left foot. Right ankle, hello, nice to meet you. Would you mind cutting back on the swelling? Because with my left foot out, having a right ankle out makes for some funny walking. I’m in so much pain and had to be out and about today and honestly, I just don’t care anymore if I am limping or walking crooked. And I know I was walking funny. It hurts just to lie in bed and I am not even moving. Dang it.

June 15, 2013

My left foot has become extremely painful. It always amazes me how a couple of toes can really throw things off for you and make life very painful. Pooh. Middle toe is very angry! Feel it in the bone of my big toe as well. And baby toe is not happy. Left thumb swelling will not budge.

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Middle toe BEFORE

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CURRENTLY

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ANGRY LEFT THUMB

June 19, 2013

So, I went to the health food store yesterday for a couple of things. Amongst my two bags, I had a gallon of liquid, 6 cans of coconut milk, bag of onions, bag of carrots, mushrooms, three month supply of vitamins and bananas. As I walked to my car with my bags loaded, I had a couple of thoughts. One, man these bags feel heavy! Two, wow, doesn’t hurt my neck to carry them. Three, I probably shouldn’t be carrying these bags.

Enter last night. Pain in rt. side of hip was off. the. chart. I don’t recall it ever hurting this bad. I was quite the hobbler today between my left foot and my right hip. Never mind my angry swollen wrist and thumb. I can’t help but think, what am I going to do when I am sixty?! If I even make it!

Enter today. Whew. Woke up with crazy pain on spine between shoulder blades. And crazy pain in hip. It is radiating pain as I lie in bed and type. If I move, I yelp and want to cry–or curse–or both. So, I am clearly not the super woman I once thought I was. My superpowers have left me.

June 30, 2013

Saw rheumatologist two days ago to go over my blood work. It’s perfect. He literally said, “It’s perfect!” Inflammation has not subsided. Have taken meloxicam daily. No noticeable side effects as of yet. Seems to still take edge off of pain for me. Not by much, but I’ll take what I can get. Doc said he would like to add sulfasalizine. OK. Let’s give it a whirl. Began evening of June 28. Went to bed last night (June 29) with a headache. Woke up with it and here it is evening and I still have it. It is a whopper. Hasn’t budged all day. I also woke up with ear pain on the same side as my headache.

August 3, 2013

Saw my doctor again yesterday to go over more blood work. He has been checking it more often now that we have introduced two antibiotics and a NSAID. It was perfect again. Relief. After the third day of taking sulfasalizine, I noticed a difference in my pain level and my headache and ear pain dimished–finally. (me thinks headaches are most definitely hormone/menstrual cycle related) I have continued to take both antibiotics, as well as the meloxicam. I can’t help but think of my stomach and what it is enduring. But I am relieved that inflammation has come down. My wrist is not as ballooned up as it was and the sausage toe on my left foot has also come down in size. The thumb on my left hand continues to cause me pain and is quite swollen. I am also experiencing pain at the base of my right thumb for the first time ever. There are days that crop up and I feel pain at the base of my tail bone. This is a recurring spot. I am toying with the idea of dropping the meloxicam to see how I fare. I asked my doc at yesterdays appointment how long I could “safely” take it before I should really start worrying about stomach. He said if it is helping to give it a go until the end of August. I also have his permission to add it back in on an as needed basis once I drop it. Last week I went after my floors–mopping, vacuuming, dusting. Next day, I was fairly fine. Day after was fine. Day three–I could barely turn neck. It slapped me right back to when I experienced lightening pain in my neck and was seeing a neurosurgeon. The pain was crazy intense. Jolts of pain occurred with slight turns of my head. It is easy to panic, to think of what the state of my body will be like years from now–Lord willling.  But then I quickly collect myself and throw myself into recovery mode. This involves not lifting anything heavier than a gallon of milk and resting when possible. Talk about being frustrated, ticked and irritated with my abilities during these times. It never ceases to trouble me that I have become so limited. The struggle with what I am now capable of pains me. Then I accept my place in life at this moment. I hope, I pray, I ask for prayer, I rest and I wait. The following day brought a bit of relief, with each following day bringing a bit more normalcy. Today, at this moment, I thank God that it is a fairly manageable day from head to toe. Thank you, Lord. Day by day….

August 22, 2013

I puked my guts out last Saturday. Hours earlier, I had eaten spicy lemongrass chicken stir fry from a restaurant. Sooo good. I also said hours earlier–“This is my new favorite meal.” The irony! I am reluctant to assume that it was the food that made me lose my entire dinner and then some. (Although it is easy to think it could be the chicken.) But who wants to give up their favorite meal?! Next thought was flu?? But I also mentioned nausea to my rheumatologist at my last visit when I asked him how long he thought it was safe to continue the meloxicam (It comes and goes frequently). I think something else tripped my system.  But to be safe, I didn’t eat my leftovers the next day. Hubs was too freaked out to go near them. And I decided to try dropping meloxicam again to help with some of the medication load my body has taken on. Tried couple weeks back and woke up the next morning racked with pain. And not being in the mood for pain, promptly added it back in. I’m happy to know there is something that helps me with pain despite the stomach risks. I dropped it again as of last Sat. after my puke fest to see if it would help. And again woke up in more pain and still felt nausea. Usually, if I throw up. That’s all it takes and I feel instantly better. Not this time. I felt sick to my stomach for days following. It was instigated even more each time I ate. I’m missing the meloxicam. Body is very achy. But I’m incredibly relieved that the antibiotics in combo have helped bring the swelling in my wrist and toe down and my stomach has been a trooper and hasn’t felt queasy the last few days. Can’t be certain what took me down last Sat. but going to continue w/o meloxicam to see how I fare.

September 5, 2013

For all that has been happening in my life and all that has been required of me, body has held up well. It’s so funny (not really) but if I don’t do much vacuuming or carrying of heavy things, I’m good in my neck area. I’m bowing down to my limits a little more in submission. Why should I be complaining about the fact that I should be doing less vacuuming and hefting of heavy grocery bags anyway? Maybe this is a blessing in disguise. 🙂 Can’t get off track with food though. Had a delicious splurge with oats and it was the wrong thing to do. 😦 Again, bowing down to my limits. Still taking antibiotic and sulfasalazine, surviving without the meloxicam. Had a consult with Joe recently. He said ok to take meloxicam couple times of week to give myself a break if need it. I did one day last week when in great deal of pain and it was sweet relief. But faring ok right now without and nothing is crazy out of control swollen.

November 3, 2013

Since I recently turned 40, I thought a state of the body entry was in order. I’m content mentally, happy with my body’s shape (eating well and not sitting still has paid off), but function is a completely different story. Currently, I’m sporting pain in my right knee, left hip (have mercy!) and left and right thumb. Overall, can’t complain. I find it slightly amusing that within the last couple of months, I have begun to experience blurred vision–the kind where you have to hold something further out to read it. The kind of blurred vision associated with aging! The only time I have ever experienced blurred vision prior was when I had my eyes dilated last year for a vision screening. I watched the letters and numbers on my phone go from clear to completely unreadable. It was weird. The results from my screening were 20/20 vision and slightly dry eyes. Looks like it’s time for another eye exam. And according to the birthday card my insurance company sent me, it’s time for me to get a mammogram as well. How’s that for happy birthday?

December 15, 2013

All things considered, I have been feeling pretty good. It has been the best early Christmas gift for me to be chugging along and not feel wracked with pain. My left hip and base of spine are the only areas lately that cause me zingers of pain. But it is not a constant issue. To not have had any swelling in my feet in some time has been the most wonderful experience ever. There are still times when I pull into a parking spot at church or the grocery store–a considerable distance from the door–and I still recall the excruciating pain that once inhabited my feet. I can’t help but say a silent “Thank you, Jesus, for my cooperative feet!” It is a beautiful thing to not be so limited in what I can do, to not be so limited in how far I can walk. I went dancing for my 40th birthday without any after effects. Glory! And afterwards, the girls and I walked several blocks home from downtown to our hotel and it was not an issue for me. In the past–forget it. Dancing–haha–in my dreams. Hoofing it home–not a chance. Footwear is unfortunately still key and I am very limited in what I can comfortably wear. Giant tear. I recently purchased a new pair of Naot boots for winter that have a slight heel. Naot flats have been my best friends since my feet went wonky. I had high hopes for my new boots and wore them the night of my 40th. I went from my hotel room door down the hall to the elevator and knew they were going to cause some serious pain if I planned on walking much at all. I went back to my room and switched shoes. Comfort over fashion rules my life. So sad.

December 21, 2013

Have for the longest time wanted to record side effects of menstrual cycle in regard to pain, headaches, skin, mood swings, etc. Two days prior to period beginning, I had a killer headache that lasted two days. I took drugs to try and knock it down. Each time meds wore off, the headache was right there in full force again. The night before my period began, my pain level tripled. I emphasize–tripled–(in hip and tail bone). Woooeee. I told hubs I went from 3 to 8. I still parked at farthest end of school and walked to son’s Christmas party determined to walk the pain away. It persists, but it hasn’t slowed me down. It gives me jolts every now and then and is a constant presence all of a sudden. Within week prior to period always break out more on face and have at least one day where I want to cry about everything and another day when I am angry about everything. I never used to experience ovulation pain, but within last year or more, I experience sharp pain and know I am ovulating.

February 21, 2016

And it’s three years later just like that. I am still on antibiotics. When I let my mind ponder that, it scares me. But my labs continue to come back normal. The deterioration continues and the pain is still there, but it is gradual and I continue to function well enough (and avoid surgery), so I am grateful. In the grand scheme of things, I feel very fortunate to be in the position I’m in physically as I write this entry. The elimination of gluten and most grains has been a tremendous help for years now. Limiting sugar and avoiding processed food and toxic beauty and home care products also continues to help. The biggest struggle as of late has been my back. Chiropractic adjustments seriously keep me moving! I can’t overdue anything or I pay a hefty price! My stomach likes what it likes and if it doesn’t like something I eat at a restaurant, it gets rid of it. Lovely. My period continues to cause increased levels of pain and also at times causes me to “lose my lunch”. Migraines continue to plague me at least a couple times a month. But here’s the best part–my feet have been cooperative and I have been able to wear shoes I could not have stepped into years ago. Hands raised in praise!

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8 thoughts on “AP Diary 2

  1. I am praying for you today. I struggle with rheumatoid arthritis (for the last 9 years) and can identify with what you are experiencing. I am trying to heal with organic food, herbs and spices, a few supplements, detox protocol (epsom baths, oil pulling, betonite clay, etc.) and exercise. Life can be so difficult when you are in a flare. Wishing I had better words to comfort.

    Have you checked into iodine for your possible menstrual/ovary issues? I have a dear friend who was greatly helped by iodine therapy written about by Dr. David Brownstein, he also writes about natural hormone replacement therapy. There is also an iodine discussion group that was helpful: http://health.groups.yahoo.com/group/iodine/

    Thank you for being so honest in your diary and for sharing. You are an amazingly strong person and truly inspiring.

    • Thank you so much for the kind words and the prayers. It means a lot. I believe so strongly in the power of prayer. I prayed for you today as well.

      I have checked my iodine levels through my naturopath in the past. But it’s always something to look at again. I am going to be contacting him about having a saliva hormone panel done. He is incredibly knowledgeable when it comes to hormones and a natural approach.

  2. Thank you so much for sharing your story, I am touched with your braveness. I hope things are working out for you. I to have PsA and your blog helped me recognise that my nail problem ….was not a fungus infection. Thank you . I will come back again later and read more. My best wishes to you and your family.

    • You are so welcome! Thank you for the kind words! So glad blog was of some help. I’m sorry you have to deal with PsA also. My best to you as well!

  3. Hey there Kelli!
    I just read through your second year, wow. Mimics lots of what I have been through in the past 28 years.
    I used to get ganglions in my left wrist which the dr would aspirate because they were so painful. They were pushing up between muscles and the pressure would lean on nerves. That slowly went away as the NSAIDs took effect. Everyso often there is one that pops ip onmy left wrist though not nearly as large or painful.

    As things progressed there would be a myriad of symptoms though thankfully not all at the same time. Ankles would swell up and the position of the feet changed necessitating special made orthotics. For the past 5 months my toes have been so painful that standing or walking, any amount, is unbearable at times. I have been battling toe nail fungus for the past 5 years only to now find out it’s the PA. This also explains the sausage toes. The foot surgeon asked how many years I had danced ballet as they resemble dancer feet! Lol If juggling 2 jobs, being a divorced mom and getting no financial help from the deadbeat ex could be considered dancing then I suppose my answer would be 26 years worth.

    My back(lower right side) has become a real issue of late with sudden jabbing pain if I move/sit the wrong way. Also have headaches which I rarely ever had in the past 55 on this planet. Oy. I tried the most wonderful sandals a few years ago from Naot but my feet kept morphing so I need to find footwear with a wide square toe box and narrow heel for what was once long and lovely feet. Josef Seibel seems to work. As I wear a full orthotic insert any pillowy soft insides need to come out…sigh.

    How often to you blog? With 4 boys it must be very difficult though they would also provide plenty of distraction. I hope Spring is touching your necks of the woods. I am in Kelowna, British Columbia, Canada which is an orchard/wine/veggie belt. There are heaps of folks providing organic fruit, veg and meats plus we have a huge lake and many smaller ones that team with salmon, trout and other fish. If I could only send you the sounds of the bird concert behind our house!

    I look forward to more entries and wish you “good luck” on your journey.
    Suzanne in Kelowna, BC, Canada

    • Wow, we certainly share a lot of the same symptoms. Isn’t it oddly comforting to know that there are others out there that understand. I really feel for you. And you have been dealing with this ridiculousness for 28 years. Talk about “OY!”

      As far as how often I blog here. It’s not very often. It is real hit or miss–sorry to say. If you want, you can subscribe on my home page and you’ll get notified whenever I do post.

      Oh, to have access to the goodness you have growing in your neck of the woods! And fresh fish–fabulous! I would love to be able to hear your bird concert! Spring has definitely sprung here in Texas. But I have to tell you–winter was oddly better for me in terms of the disease. It feels like the disease has new life lately in sync with the change of seasons. Please stay in touch and thanks for reaching out!

  4. Hi Suzanne, & Kelli,
    Its so frustrating that this information about toes and general symptoms about PsA is not out in the open. I too have been suffering recently with my thumb and knuckles now being effected. Oh my feet …say no more…can not stand too long …then can not sit too long…Its thanks to you guys that it helps people understand what is going on in their bodies. I have just started (through my own research …as my Rheumy is near on useless)… Ldn …Low Dose Naltrexone http://www.ldnresearchtrust.org/ I am on my second day so can not report back anything usefull just yet. I have started a blog but nothing like your lovely blog…mine is slapped together …with no skill in writing LOL. Its just a way of keeping an online diary about what is going on . http://psa-france.blogspot.fr/ Feel free to leave your comments. I really hope things work out for you both. Try to reduce stresses in your life if you can …(I know all about it …believe me..I have ticked most boxes…death…cancer…you name it …) Stress really plays a big part in autoimmune diseases… Now I need to go and take some of my own advice.

    My best to you both .
    Alex

    • Hi Alex!

      Great to hear from you again! I’m with you on the lack of information being out there about PsA. I went back and forth between two different dermatologists looking for answers regarding the issues I was having with my nails and neither one of them ever gave me any definitive information. My rheumatologist was the one that sent me to a dermatologist because he couldn’t be sure it was disease related. Now I know. All that education….

      I’m really looking forward to hearing about your experience with low dose naltrexone (LDN). I have read a great deal about it and have considered it. I spoke with my rheumatologist about it just over a year ago and he didn’t dismiss it. He had never tried it with any of his patients though. I have read of people having success with it on the Road Back website.

      It’s wonderful that you are blogging! You will be so glad to have a record of this madness. I can’t tell you how many times I have referred to my blog either at the doctors office to recall something or at home to remind myself of how my body was handling things in the past. Blogging has also served as a stress reliever for me. I have read a great deal about how our bodies respond to stress physiologically and have learned a lot from my naturopathic doctor, and you said it–try to reduce stress. It’s a killer! Crazy isn’t it?! I have blogged about it in the past because I have felt the effects of it physically. It’s why doing things that bring me joy is so important to me.

      I look forward to reading your blog and truly hope you find relief with LDN.

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