September 25, 2013 at 10:50 pm #367343
The Eccentric Dr. M
For those of you who follow my post, you’ll know that I made an appointment with an infectious disease doctor. The intention of my visit was to be tested for Lyme and other possible co-infections that could be hindering my progress on AP therapy.
I wasn’t sure how this visit would go- this doctor has been practicing medicine since I was in diapers- literally. In 1977 he uncovered the largest botulism outbreak in Michigan (the year I was born!). I had to wait over 2 months to get an appointment with this doctor, so I’m assuming he’s really good. One person even compared him to “Dr. House” (that can be good or bad). During my visit I explained that I was diagnosed with RA, and that I’m currently following the AP protocol. In a very kind voice he said “You know that’s not the preferred treatment”… I smiled and said “Yes, I know”. Regardless, he told me that he’s all for anything that works, which I was very thankful for. I hate having to defend AP therapy! I went on to explain that I’m not debating my RA diagnosis, but I wanted to rule out any kind of infection that could be a causitive factor in relation to “inflammatory arthritis”.
For the next 30 minutes he asked me a battery of questions (crazy questions, and some of them very uncomfortable), but I was 100% honest with him. He also reviewed my labs and agrees that things like Mycoplasmas, Chlamydia, strep, etc. can “hang out” as he said, and cause inflammatory arthritis and/or connective tissue disease (again, what a relief).
I left his office with a script for a blood draw- I will be tested for 18 different ailments (including Lyme). He didn’t make any promises, but simply said that he’ll call me personally once my labs come in, and he will do everything he can to get me a diagnosis/treatment and see if we can get everything under control in the event I test positive for anything.
So that’s that. Now I wait.
I’ve been thinking about my pending lab results, and what would I tell my AP doctor in the event I test positive for any of the diseases that Dr. M is testing me for. In the end I came to the conclusion that I don’t need to explain myself or my reasoning for going to an Infectious Disease doctor- period. Should any of my labs come back positive, I’ll simply schedule an appointment with my AP doctor and tell him about the lab results, and that I’m being treated as required. However, I also respect doctors like Dr. K (my AP doctor), and I refuse to go behind his back and seek treatment for anything major without keeping him informed. Think about it- our AP doctors are taking somewhat of a risk prescribing Mino for RA. Therefore, I owe it to him to be open and honest about any addtional treatment I’m receiving. If anything were to happen to me as a result of me not being honest with my AP doctor it would be a horrible situation… I wouldn’t want to put anyone in a bad position.
I’m glad I made this appointment. Although it’s impossible to be tested for everything it will be nice to rule out some big stuff. Although Dr. M is not an AP advocate per say, I would recommend this doctor to anyone in Michigan with “odd” symptoms, as he’s very open minded and nothing was off limits or considered ridiculous during our conversation. It was a miracle alone that he didn’t go ballistic when I told him I was using antibiotics to treat my RA, he didn’t even flinch. I’ll keep everyone posted of course, but this doctor could potentially be a good resource for other people in Michigan with auto-immune illness.November 25, 2013 at 7:16 pm #367344
First off I need to update everyone, I’m LYME NEGATIVE. I was also negative for the other “host” of critters I was tested for.
MONDAY, NOVEMBER 25TH… HAPPY THANKSGIVING TO ME!
Hi friends- it’s been quite a while since I’ve updated my personal thread, primarily because I haven’t had anything positive, clever or witty to say. To quickly recap, this is a list of “crap” that’s been going on:
Extreme knee stiffness/soreness. The problems with my knees has become so severe that I cut my water consumption down; I simply didn’t want to use the restroom (worst thing an arthritic can do, I know). Remember when I talked about learning how to pee standing up? Well, I reached my breaking point because I had to start peeing in a large cup… then empty the waste. I know this horrible and disgusting, but I would end up sitting on the oval office for quite a while not wanting to stand up in anticipation of the “impending doom” of pain. I simply had to come up with a “work around” to make my life easier.
Extreme shoulder pain- shoulders are constantly “cracking”, it’s like they are coming out of the socket. Some mornings my shoulders were so bad that I could NOT raise my arms to save my life. It’s like they were completely locked up. Additional problems with burning sensation in neck and shoulders when walking. Some mornings I wondered how I would wash my own hair!
Hands becoming so stiff/sore that I can barely make a fist with my right hand, and the left hand was a challenge. Difficult to hold a pen in the morning to write…
Finally, an overall feeling of “malaise” and just exhausted. NO energy to do anything what so ever. Late for work EVERY DAY… Luckily I have a position where there’s flexibility in my schedule.
My AP doctor was extremely alarmed at my condition when I saw him in early November; I even had a melt-down in his office and started crying. The melt down definitely worked in my favor, because he immediately sprang into action like never before. I had been on Clindy since late August, yet I continued to get worse and worse. He decided to pull the plug on the Clindy and insisted that I go back on Mino, but with a very “slow and low” approach. Given my past experience with Mino I wasn’t happy about this, but I reluctantly agreed- what else was I going to do? The approach was to find a compounding pharmacy to reformulate the Mino I had left from my previous script. He promised me that if the pharmacy didn’t agree to reformulate my script, he would drop them and do business with a different compounding pharmacy. This was on a Tuesday- I had the re-formulated Mino in my hands by Friday the same week.
I decided to take a 10 day sabbatical between my transition from Clindy back to Mino – I was preparing to travel to the Dominican Republic, I didn’t want to risk getting ill during my vacation. Once I returned from vacation I began Mino (20 mg 1/daily, M-W-F). My first dose of Mino was Friday, November 15th (20 mg 1/daily).
I was feeling icky when I came back from the Dominican (Montezuma’s Revenge). At first I wasn’t sure if the Mino was making me ill, or good ole’ Montezuma… but after a few days of being back in the states and eating normal food I began to feel better, and noticed I wasn’t having any negative reactions to taking the Mino at 20 mg 1/daily, M-W-F.
I stated previously that I re-started Mino on Friday, November 15th. Today is Monday, November 25th… and I swear to God (and I’m not a religious person), that I’m already on the mend (I say this with extreme caution).
Friday night I was driving home from work- I had the urge to go out for drinks with my husband (don’t judge). I hadn’t felt this way since I began sliding backwards in August- I felt like “Michelle” again. Although I didn’t go out for drinks, the fact that I wanted to DO something was a miracle within itself.
Although Saturday morning brought about the usual pain/stiffness/soreness, I noticed it wasn’t as intense as usual. I ate some food, took an Aleve, and noticed I felt a great deal of additional relief within the first hour (this is highly unusual, as anti-inflammatories were doing little to nothing to help me as of recent). Although I laid around until almost noon, I was actually motivated to get up and clean my house… and although I had to take several breaks, IT FELT GOOD.
Sunday brought more of the same… Morning discomfort not as intense, took an Aleve, more relief. Did some work around the house… Took breaks when I felt tired (it’s crazy that I can’t even do the dishes without being exhausted), but that’s okay- I’ll take it for now as I know it’s part of the process. OH… and my knees! Although they are still giving me fits, I’m noticing it’s slightly easier to stand up from a sitting position. I’m also walking better- much better. When I’m wearing high heels again we’ll talk, haha.
I know this sounds completely unbelievable; Mino doesn’t generally work this fast. Perhaps the Clindy WAS working, but I was taking a dose that was too high for me, hence the perpetual feeling of “crap”. Taking 10 days off before reintroducing the Mino could have done the trick too- sometimes you just need a break from AP- it’s extremely taxing on the body. Although I’m feeling hopeful again, I’m still extremely cautious, as this is the third time I’ve done this song and dance in the past year and a half (got better, got worse, got better). Will continue to keep everyone posted.January 13, 2014 at 8:15 pm #367347
Rheumatoid Arthritis- You’re not the boss of me!
So before I provide an RA update, I’m going to tell you about an endeavor I had recently on Facebook. So apparently I’m not very smart… I’m pretty stupid actually.
I joined a group on Facebook- it’s a group of people who suffer from chronic pain/illness. The only reason I joined the stupid page was at the urging of a dear friend; she thought I would have some really good insight for people who suffer from RA and other auto-immune related conditions. Big mistake. Epic FAIL! F!
Although I’ve had ups and downs, I’m still a huge advocate in AP therapy, so I posted the link for our website. Within minutes I was receiving hate mail from the administrators, accusing me of spamming their stupid Facebook page and they deleted my post. Really? I have a full time JOB and I’m a full time PATIENT, like I really have time to spam their stupid Facebook page of all things. Anyway, one of the administrators with half a brain finally reached out to me and realized I wasn’t spamming at all, and she asked me to repost the Road Back link, and she apologized. Fine, things happen. Apology accepted. One lady ended up reaching out to me, she told me her daughter has Lupus, and that she wanted to talk to me, so I guess it wasn’t a complete failure.
Michelle Woods, Professional Spammer/RA Patient
Okay, enough of my pity party nonsense, let’s talk about my buddy Rheumatoid Arthritis. I reported back in late November that I was feeling better, I’m probably about 55% improved. I’m walking reasonably well and making efforts to get back into my workout routine, as I’ve turned into quite the “fat bottomed girl” in the last few months… It’s bad enough I have RA, do I have to be a fat ass too? I’m not a skinny girl to begin with, and I like to eat, but I need to get this weight under control… The extra pounds do nothing positive for my health, period.
I’m getting more and more frustrated though. While I’m appreciative that I’m better, I feel like my progress as stalled- I’m really not doing any better than was in November. My hands are acting like jerks- extremely stiff/swollen. Good times! On a positive note, I’ve got a pair of kitten heals I can wear to work on good days- that was out of the question a few months ago. Kitten heals, really? Whoopee!! I return to the RA doctor next week, if anything of interest comes about I’ll be sure to post.February 3, 2014 at 3:25 pm #367346
Slowly closing the sausage factory… Monday, February 03, 2014
I’ve finally hit another milestone in terms of better health. The last few weeks have treated me well in relation to my energy levels returning to almost normal, and the “icky sick flu” feeling is practically non-existent. As for my joints they are slowly, slowly, getting better- my fingers are looking semi-normal again (hence the term sausage factory), and my knees and shoulders are cooperating much better these days. I’m past the threshold where I dread getting out of bed in the morning, with only mild to moderate stiffness/soreness, which dissipates rather quickly as I begin to move around and start my day. Finally, I think I’m at a point where I can cut back on my anti-inflammatory meds from 3-2 per day.
What am I doing now? I’m still taking Mino, but the plan is to remain SLOW & STEADY with only a 10 mg increase at a time. I’m presently taking 30/20/20 mg, 1/day, M-W-F. I know the dosage might sound impractical to some, but please don’t judge. This is my journey and everyone responds different to this therapy.
Normally I have something sarcastic and witty to say, but today I don’t. I’m actually feeling really inspired, I guess I’m just happy to return to the land of the living.
Yesterday I was watching “Super Soul Sunday” on the Oprah Winfrey Network (yes, I’m going there, even the queen of sarcasm needs some positive reinforcement now and then), and I watched an interview with Diana Nyad, the long distance swimmer. She said something that really resonated with me- she was talking about no matter what you’re going through in life, you need to “find a way” to get past your obstacles. Such an understated thought, yet very impactful at the same time, and it made me think of myself, and fellow AP users- we’re all finding a path around our health obstacles.
A few months ago I was on vacation with my husband- we were traveling to the Dominican Republic. We were in Atlanta for a layover and I was in so much pain I couldn’t even pull my suitcase behind me- my husband had to do it for me. How in the hell could I not pull a suitcase on WHEELS??? Finally, just when I thought it couldn’t get worse, a group of airport employees were yelling over to me saying “Mam, do you need a wheelchair”? I pretended I didn’t hear them and kept walking. God as my witness, I would have crawled through that airport in Atlanta on my hands and knees before being wheeled around in a wheelchair. Please don’t misunderstand me- I would never judge other for using a wheelchair, but for me using a wheelchair would have been a sign of defeat, and I’m not ready to quit fighting yet.
This was without doubt the darkest hour I’ve been through in relation to RA- but even during that time something inside me said “keep fighting”… and I did. I can’t tell you how I did it, but I did. It was nothing short of a divine intervention that I’ve been able to get myself up and out of bed in the morning just to get to work, but I did.
This post is dedicated to those of you who struggle and fight to get out of bed in the morning. No matter what, it can’t rain forever… The sun has to come out again someday.February 18, 2014 at 3:56 pm #367345
February, 18, 2014
Slowly returning from the pit of hell
Aside from feeling like the Jack Nicholson character in the 1970s horror film “The Shinning”, I’m doing fairly decent at the moment. To all my fellow AP’ers throughout the mid-west and north east, I’m sure you can relate to my cabin fever, as this winter has been nothing short of brutal. I’m beginning to wonder if the snow and cold will ever retreat? Hello Alaska, this is Michigan calling…. Can you please take your weather back?
Although I have days here and there where I’m absolutely exhausted, my energy levels continue to improve and I’m sleeping reasonably well. When people ask how I’m feeling I tell them “I’m not where I’d like to be, however I’m way better than I was a few months ago”. I’m at a frustrating point because there are days when I feel like I’m getting better, but then I feel like I’ve plateaued again, or I become upset when my arthritic hands don’t behave how I’d like them to. A good friend of mine on the site reminded me that sometimes progress slow; so slow in fact, it cannot be measured. This is one of the smartest things I’ve heard in a long time. Thank you.
When I start getting really flustered I think back to early November, 2013, when I was at Atlanta International Airport, and people were chasing me down asking me if I needed a wheelchair and I pretended I couldn’t hear them. I don’t care if pride is a sin- I would gladly crawl across the floor in the airport terminal before I’d take a wheelchair. I know this might sound arrogant but I don’t mean it to be. In my mind using a wheelchair means RA has won… I often think of my story as “Man Vs. RA”, and I absolutely refuse to give in; it’s simply not an option. Like I always say, there’s a “work around” for everything except death and taxes; RA is no exception.
While I won’t be training for the Olympics anytime soon, I’m walking every day for 15-20 minutes following my lunch break at work, and I recently got back on the treadmill within the last month, walking another 20 minutes when I get home. It wasn’t easy getting back on treadmill- my knees weren’t having it in the beginning. However, after a few weeks the stiffness/soreness slowly retreated and while not 100%, the discomfort is mild enough to where I’m able to work through it. My normal workout was 3.5 MPH on an incline.. Today I can only walk 2.4 MPH with no incline, but that’s okay- at least nobody is asking me if I need a wheelchair. 😆
I’m still not wearing high heels… **sigh**, but I’ll bring “sexy back” one day! 😉
In previous posts I’ve written about my encounters with APers vs. non-APers… and how flat out angry non-APers get when you try to start a conversation about anything “outside of the box”. I think about this a great deal actually, and wonder what it is that separates the two…. What is inside the mind of us who receive a so-called “auto-immune” diagnosis, and think “Okay, you mean to tell me my immune system just decided to attack my body for no reason” Bullshi*!, and we run like hell from the traditional world of Rheumatology. We’re either really stupid, or incredibly brave- I still can’t figure it out. Who the hell did I think I was, walking out of University of Michigan Rheumatology, simply “dismissing” their advice? I didn’t know what the hell I was going to do, but I “knew” I wasn’t going to go “that” route. It was something inside of me that I didn’t even feel the need to defend- even at my lowest point there was something inside me that instinctively said “Michelle, keep fighting”.. Looking back I don’t know how I got myself dressed and off to work in the morning, I really don’t, and I honestly wonder should I ever get back to that point, can I do it again?
My Dad had a saying- whenever I would refer to someone as “crazy”, my Dad would say “Being a little crazy is okay, it helps sometimes”. As a teenager I never understood exactly what that meant, but if my Dad were here today, I would tell him “Yes Dad, indeed it does”. 😆
March 21, 2014 at 12:51 am #367348
Thursday, March 20th
Can’t control the itch!! Are ya feeling “rashy”..?? Well are ya?!
Okay, I’ve got this NASTY looking rash on my left leg- it’s in between my knee and ankle. It looks like a bunch of “welts” for lack of better term, and it’s itchy as hell! I could be the frekin poster child for the Monostat commercials… Talk about an “itch you can’t scratch”… My leg is bleeding in some spots because I’ve itched it so hard! My leg was like “What the hell did I do to you”? Poor leg. The other leg is trying to flare up in the same area, however I’m doing my best to leave it alone. I don’t need RA and look like I have flippin Leprosy! Here’s a good one for you… I’ve resorted to sitting in meetings at work and itching my leg in front of everyone- I have no shame. It just cannot be helped.
I have a few theories… I ran out of probiotic well over a month ago; I purchase it from my AP doctor but haven’t got back there in a while and I never bought more. BAD Woods, I know. I’ll be taking care of that problem STAT. I’m hoping I don’t have some kind of fungal crap going on as a result. I won’t be doing that snit again anytime soon.
Second theory- perhaps it’s a “herx” symptom? I’m not 100% certain, but I remember reading the Road Back and Doc Brown would sometimes prescribe an antihistomine to some individuals who were extremely sensitive to the protocol. That said, I bought an anti-histomine cream and I’m going to take an oral anti-histomine to see if my symptoms improve.
I visit my AP doctor next week- I’ll keep everyone updated, hopefully I can get this under control and maybe this post will help someone else who has “that itch they can’t scratch” in the future.
In terms of my RA pain I’m doing pretty well. Not exaclty where I’d like to be, but life is good again; the glass is definitely half full right now, and for that I’m extremely grateful. I hate complaining about this stupid rash, I need to just shut my trap and be gratefull that I can walk again!
I hope everyone who reads this is doing well!April 4, 2014 at 6:41 pm #367349
Mad Cow Disease- slowly retreating.
Went to see my AP doctor last week- he was so happy to hear that I’m doing better that he wouldn’t let me leave the office; he talked my head off!
In terms of my RA things are progressing very slowly, but nicely. Last week I discovered I can cross my arms again; I haven’t been able to do that in over six months, and my fat fingers are slowly, slowly continuing to retreat to their normal size; some days better than others, but on a good day I can actually open a bottle of water again which is a pretty big deal! Unfortunately my brain fog has been really bad… but that’s okay, I know it’s part of the getting better process, and that too will eventually pass. I can’t stress enough- I’m really thankful that I’m getting better, but I’m so nervous that I’m going to hit that “bump” in the road again and spiral down to the pit of hell again… I have to try and not think about it too much though, and just remind myself that I have a completely different strategy this time around in terms of my dosage increases, whereas I’m only bumping up my dose 10 mg at a time vs. 50 mg. I’ll tell you one thing- I’m sure as hell not going to get cocky like I did the last time I was getting better; I’ll definitely take the “cautiously optimistic” route this time, and just give thanks each day for having a “good day”.
Now for the rash… OH the bloody rash! “Hello, my name is Michelle Woods and I have Mad Cow disease” Christ on a bike! My legs look like someone threw holy water on me and it burned me! Now let’s see- what remedies have I tried thus far that haven’t worked:
OTC Cortisone cream
OTC Anti-histamine cream
Prescription HYDROCORTISONE; PRAMOXINE
Tea Tree Oil
Surgical Soap- the logic here was that I could scrub the toxins away from the surface of my skin… Scrub Christina, scrub! (jab at the movie “Mommy Dearest”)
Now, out of all the things I’ve tried, it appears the following have been the most helpful:
Witch Hazel – this has been amazing at providing long lasting relief from the burn/itch.
Gold Bond Intensive Healing cream
Oh yes ladies, not only does baking soda make your pastries taste better, but it also helps rashes to retreat (at least in my case). I guess the logic here is that it helps pull out the toxins from your skin. I decided to take a soak in the tub when I got home from work yesterday; big mistake. HUGE mistake. Getting out of the tub was quite humorous- I had to do this move where I sort of rolled myself off the ledge then on to the floor (please don’t ask)… Dear God what was I thinking? Anyway, I soaked in warm water and baking soda for about 15 minutes, and it probably took me damn near half that amount of time to strategize as to how the hell I was going to get out of the tub. When I first got out of the tub the rash was a little irritated, but about 20-30 minutes later it began to calm down nicely (I’m guessing the water might have been a bit too warm). By the time I was getting ready for bed a few hours later, I noticed the rash was a little dry looking, but in a good way. I decided to let air dry and not put anything on it for the night. When I woke up this morning, I can actually tell that the rash slowly beginning to retreat. The bumps aren’t as prominent, and it’s not as “angry” looking. My plan at this point is to SOAK my legs in cool water and baking soda each night and continue doing this until I reach full recovery.
Finally, I’ve been using Gold Bond intensive healing cream- I think that’s helping a bit, but all the same, the witch hazel and baking soda has proved most effective up to this point.
There will be NO Mad Cow Disease on these legs this summer! I absolutely refuse!May 5, 2014 at 2:56 pm #367350
Wash out! Trying to control the itch!!!
In an effort to “control the itch”, I decided to do a 7 day washout of Mino. It definitely helped, as the rash has finally started to retreat and it doesn’t look so “angry”. It’s important to note that I experienced a slight flare in symptoms once I resumed my normal dose of Mino- nothing too crazy, but I felt icky and had more joint point than normal. This lasted for about a week and I’m somewhat back to normal, although my brain fog is HORRIBLE… It’s frustrating as hell, but I know it will eventually pass. As for the rash it’s still itchy, but slowly, slowly getting better, so slow that it’s difficult to tell that it’s actually getting better. The skin on my left shin looks remarkably better- the right shin is trying to get there. In the interim I’m going to continue drinking boat loads of lemon water and dandelion root tea.May 12, 2014 at 2:45 pm #367351
Hi everyone- quick update. The Mad Cow rash is slowly going into retreat!
I’ve been back on AP for a few weeks and I’m doing pretty decent. The “generalized” body itching has ceased about 90%, and the rash on my legs is slowly, slowly going away. The left leg looks much better, I’d say it’s about 70% improved in relation to both itching and overall appearance. The right leg is about 50% improved. Based on feedback from Dr. S in Iowa and another patient who went through a similar experience, I do not plan to increase my dose of Mino until the rash clears up 100%.
In terms of my RA I’m still doing well, although I’ve been experiencing some minor flare ups the last few weeks, but nothing that’s putting me out of commission. However the flares are not daily, and I do not feel like I’m sliding backwards as I have in the past. I’m now in my 7th month of gradual progress which is a HUGE milestone for me. This is the longest period of time that I’ve been able to sustain any positive results since I began AP therapy in July, 2012. I am cautiously optimistic.
Brain fog still sucks… **sigh**. However, I know it will improve over time, I just need to be patient.
Based on my positive results throughout the last 6-7 months, I plan to continue the “slow & low” approach in relation to dosage, increasing my dose in 10 mg increments. In terms of timing, I’ll likely increase my dose by 10 mg on a monthly basis, but only if my body tells me it’s okay. Simply put, if I’m feeling well I’ll increase… If I’m not feeling well, it means the time isn’t right.
The last time I had labs was in October, 2013- I think this would be a really good time to re-evaluate where I am in terms of blood work.
That’s all for now! Hope everyone is doing well!June 18, 2014 at 1:42 pm #367352
Slow, but steady progress.
Just wanted to post an update- I’m continuing to make slow, but positive progress.
Within the last two weeks I’ve noticed my hands are much better. I’m able to open bottles and jars again on my own, although I still need help at times depending on the day. I’m also able to cross my arms and stand with my hands on my hips again. This is a really big deal; it’s been almost a year since I’ve been able to do either. My morning stiffness/soreness is much improved- the worst of it is over within 5-10 minutes after I wake up, and almost completely gone after taking a hot shower. I’m FINALLY able to wear high heels again- I honestly never thought that would happen! Finally, I’m slowly decreasing the amount of anti-inflammatory I’m taking; I’m down to 1 ½ per day.
The nasty mad-cow rash is also gone and my skin texture has returned to normal.
My husband and I own a boat and I’ve found that I’m able to climb in and out with ease… Again, another huge milestone because last year I didn’t want to get out of the boat in fear of not being able to climb back in on my own.
Still taking a slow and low approach to my dose, presently taking 30/20/30 M-W-F. I will increase my dose by 10 mg on July 1st. The end of June will mark the 7th consecutive month of progress… This is the longest period of sustained progress I’ve had since beginning AP therapy.
Still dealing with major brain fog, however I feel as though it’s slightly improved, but I still have a long ways to go!
Hope everyone is doing well!June 30, 2014 at 1:49 pm #367353
Monday, June 30th
The Summer Wind
After the Artic Vortex and temperatures colder than Alaska this past winter, I think most of us in the Mid-West/North East regions can appreciate the summer weather. There’s almost nothing I enjoy more than sunshine, blue skies and being out on the water.
We’ve had some sticky, humid temperatures in the mitten over the last few days- my hands and feet are not agreeable to it whatsoever. Over the last two years I’ve noticed by body is extremely sensitive to any major changes barometric pressure- symptoms typically last about 48 hours, during which time I get a horrible “achy” feeling in my joints that I don’t normally have. However, it hasn’t been anything to put me out of commission, and I certainly don’t feel like I’m sliding backwards, so I’ll gladly deal with it. I feel like my brain fog is slightly better, but I’m still have a difficult go of it.
Aside from issues with the humidity my joints are doing pretty well. I would say my hands are at about 70% good, which exception of my “trigger finger” in my right hand. However, in the last few weeks I’ve noticed I can bend it more than normal; I know it will eventually get better. Knees, elbows, ankles, shoulders & neck are functioning at about 90%. For the most part my energy levels are pretty good. Not sleeping as well as I’d like too, but it’s not horrible either.
I’m down to 1 ½ Aleve per day and presently taking 30/20/30 Mino, 1 daily/M-W-F. I’ll finally be increasing my dose by 10 mg on Wednesday, July 2nd which will put me at 30/30/30 M-W-F.
Mad cow rash on my legs is still gone. Skin looks 100% normal again. I’m surprised- I scratched my legs until they bled at times.
That’s all for now… hope everyone is doing well.July 10, 2014 at 8:26 pm #367355
Thursday, July 10th, 2014
This update won’t be very thought provoking or enlightening; it’s pretty much for documentation purposes only. I’m sad to report that I’ve hit a small bump in the road. 🙁
I’ve been making very slow, but steady incremental progress since the November/December timeframe of last year. However, during the last week I’ve been noticing a lot of aches and pains I haven’t had in quite some time. I’m experiencing a slight increase in stiffness/soreness in my hands along with “sharp shooting” like pains. My knees, shoulders, elbows and feet have also been impacted- no stiffness, but just funny, shooting pains. Historically I’ve been able to associate “shooting/sharp” pains with herxing, not a flare. Not much change in terms of how I feel in the morning when I wake up. Majority of the stiffness I do have in the AM is gone within about 5-10 minutes of waking up.
Regardless, I’m very concerned given my history of ups and downs with AP… **sigh**. I can’t imagine what life will be like if I have to return to the “pit of hell”. I’m not sure I have the strength physically or mentally to endure something like that again.
A few things to take note of… The weather has been up and down here. One day it’s humid, the next day it’s very dry. Even when I’m doing well from an RA perspective, my body still doesn’t like constant changes in barometric pressure. I also had a very stressful situation occur a few days ago, which could be adding to the fire, who knows. Finally, I have NOT recently increased my dose of Mino, so that’s obviously not the reason.
Above said, I’ll continue to monitor the situation throughout the rest of the week into the weekend. If things aren’t noticeably better by next Monday (July 14th), I’ll do a washout and see what happens. I’m not a praying kind of person, but please send some positive vibes my way!!! 😉July 16, 2014 at 1:22 pm #367354
To herx with you! Wednesday, July 16, 2014
It would appear I was having a slight herx, as the weekend proved to be much better for me. The funny aches and pains I was experiencing all over are gone for the most part, with exception of my hands. Not necessarily surprising given the fact my hands have been extremely stubborn throughout this entire ordeal, so I’m not overly concerned at this point.
Nonetheless, I’ll continue monitoring my progress and will make adjustments in my dosing if necessary.July 24, 2014 at 2:44 pm #367356
Thursday, June 24th
Thursday, June 24th… “Throw back Thursday”.
A look back… Three years later.
I was diagnosed with Rheumatoid Arthritis in the summer of 2011 before my 34th birthday; I was completely devastated. If I had to guess what jumpstarted my RA, I would say it had to do with genetics, illness and stress combined. I have a family history of RA on my Father’s side of the family, and I was under a great deal of stress. I had a high pressure job that I absolutely hated, and was trying to navigate through the waters of Dementia with my Dad. I got a common cold that summer; my first symptoms began about a month later. All of these things combined likely threw my immune system into overdrive, it was basically my body saying “screw this, we’re done”.
I’ve said this many times, but I instinctively “knew” that conventional meds weren’t the right path for me. This is strictly my own patient perspective, but I don’t believe in “auto-immune” disease. I don’t care if you’re a Harvard physician- you won’t change my mind. If you read this and think I’m a nutcase it’s perfectly fine; I’ll own it. A true auto-immune response is when your body rejects something- i.e. foreign objects in the body. I’ve had the same body parts my entire life… Why would my body suddenly turn on me? The notion of “The immune system gets confused and begins to attack healthy joint tissue” is complete bullshit, period. During those early days I knew something “underlying” was going on to cause this, and looked at it from the perspective of my body’s check engine light was going off. The million dollar question was, what was causing my body to suddenly turn on me?
It took almost a year, but I finally stumbled across AP therapy. Finally, something that had some logic and made sense. My body wasn’t turning on me at all, but rather trying to fight off an infection in which my joints were getting caught in the friendly cross-fire. While I had serious concerns about taking an antibiotic for the rest of my life, it sounded a hell of a lot better than jumping from biologic to biologic- let’s give this a try.
If you’ve followed my posts you know I’ve had a great deal of highs and lows, but I don’t regret any of it, the good or the bad. I’ve been in a place where I could barely get myself to the bathroom, to rocking high heel shoes. Where am I today? I take each day as it comes and although cautiously optimistic, I consider the glass half full. I can only move forward the best way I know how, and this is what I know works for me.
I don’t know if I’ll ever reach full remission, but I’m in a place where I feel as though life is worth living so I’ll take it. I’m pain free for the most part, and while everyday isn’t perfect that’s okay- it doesn’t need to be.
How do you know what’s right for you? It’s that little voice inside that tells you you’re going down the right path- you just know you’re right, and you don’t feel the need to justify or explain yourself to anyone. You might even think you’re crazy sometimes, but that’s okay. Being a little crazy helps. I think you have to be a little crazy to go down this path, and I’m perfectly fine with that. 😆August 25, 2014 at 12:21 am #367357
Sunday, August 24
RA go away…. Never come another day!
Grrr….. Overall I still feel decent, however I’m getting those funny little pains all over again **sigh**. My hands aren’t behaving as nicely as I’d like them to either, and my knees are sore. I should stress it’s not enough to make me feel like I’m sliding backwards- I still feel pretty good, however it’s enough for me to be concerned. After 8 months of solid, steady improvement, this is a huge disappointment. If I end up in the “pit of hell” again, I don’t know what I’ll do. I don’t think I can handle it emotionally, mentally, and certainly not physically.
I should note that I increased my Minocin dose by 10 mg a few weeks ago. I’m debating on whether or not I should do a wash out… I’m really torn at this point. I keep going back and forth. Will update once I make a decision.
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