Finally, after all day in pain, I had my husband take me to urgent care. We are lucky that there is one within 10 minutes of our home that is open until 10pm on weekends. As our insurance will not cover what they do not consider to be emergencies at the ER. We simply couldn't take that risk.
The doctor said I was suffering from Intercostal muscle spasms. Which means that the muscles between my ribs are spasming. In my case, she feels that it may be caused by one of two things.
A) The connective tissue between my ribs is still significantly inflamed and has caused them to spasm.
B) The spasming is a precursor to Intercostal neuralgia, cause by shingles. Usually the pain and violent spasms show up before a rash.
I had the chicken pox at 9 months of age, so shingles is a possibility. Also, MTX may have knocked down my immune system (indicated by feel pretty good all week) just enough for the virus to flare. If that is the case, it is a double edged sword.
Medrol
Percocet
Flexeril
Moist heat
Wait and see if a rash appears. Follow up with my rheumy early this week.
*le sigh*
Last night was rough. Fortunately, when the meds kicked in, I was able to get some rest.
Sunday, January 29, 2012
Saturday, January 28, 2012
Costochondritis?
This morning, I went about my normal routine.
Made breakfast for hubby and I, emptied dishwasher, reloaded it while breakfast was cooking.
Sat down to eat. Twisted slightly to move a chemistry textbook that was digging into my knee.
Next thing I know I am doubled over with my ribs in excruciating pain. Any move makes it worse. Tears came instantly. Cursing at the pain, I made my way to the bathroom to grab morning meds and pain meds.
I tried calling my rheumatologist via the Nurse on call, but they put me in touch with my PCP. Who said go to the ER. So I called back and told them I specifically need to be in touch with my rheumatologist.
It took them a feel minutes to get her on the line, but the nurse got my doctor on the line and called me back. She's calling in Medrol. Hopefully, it will quiet down the costochondritis, if not I'm suppose to go to the ER.
Normally, I can endure high levels of pain without uttering a sound. This is so sharp and quick, I could not help, but cry out.
Valium has taken the edge off of the spasms, but barely so. As long as I sit still and keep pressure with an ice pack, don't breathe too deep, I can stand it.
I know that they are covering their asses telling me to go to the ER and that the pain is bad enough, I probably should. What are they going to do? Take Xrays and give me narcotics. While I would welcome relief from the pain, I need to buy groceries.
Glucocorticoids are gonna have to do it.
Made breakfast for hubby and I, emptied dishwasher, reloaded it while breakfast was cooking.
Sat down to eat. Twisted slightly to move a chemistry textbook that was digging into my knee.
Next thing I know I am doubled over with my ribs in excruciating pain. Any move makes it worse. Tears came instantly. Cursing at the pain, I made my way to the bathroom to grab morning meds and pain meds.
I tried calling my rheumatologist via the Nurse on call, but they put me in touch with my PCP. Who said go to the ER. So I called back and told them I specifically need to be in touch with my rheumatologist.
It took them a feel minutes to get her on the line, but the nurse got my doctor on the line and called me back. She's calling in Medrol. Hopefully, it will quiet down the costochondritis, if not I'm suppose to go to the ER.
Normally, I can endure high levels of pain without uttering a sound. This is so sharp and quick, I could not help, but cry out.
Valium has taken the edge off of the spasms, but barely so. As long as I sit still and keep pressure with an ice pack, don't breathe too deep, I can stand it.
I know that they are covering their asses telling me to go to the ER and that the pain is bad enough, I probably should. What are they going to do? Take Xrays and give me narcotics. While I would welcome relief from the pain, I need to buy groceries.
Glucocorticoids are gonna have to do it.
Thursday, January 26, 2012
Paraffin Bath Treatments . . .
This is something that many of us could do at home.
My mom has a paraffin spa/bath that she often turns on a couple hours before I come over.
I have never tried wrapping my hands, but you'd better believe that I will be trying this next time I visit my folks!
My mom has a paraffin spa/bath that she often turns on a couple hours before I come over.
I have never tried wrapping my hands, but you'd better believe that I will be trying this next time I visit my folks!
Monday, January 23, 2012
Women's Health Magazine Article
Thanks to Rheumatoid Arthritis Guy for posting this link today!
Educate, educate, educate! It will help other's become informed!
When Your Body Attacks - Women's Health Magazine
Educate, educate, educate! It will help other's become informed!
When Your Body Attacks - Women's Health Magazine
Friday, January 20, 2012
Filing for Disability~ "When You're not Sick Enough"
This is a topic that comes up all too often in my online support group.
We don't look sick on the outside, so we must be fine. Right? Wrong!
Every step I have taken in the last two years has been directly 180 degrees away from filing for disability, even when I couldn't get out of bed to pee or take more pain meds. Mentally, at this point, I just cannot even think about it.
That said, I completely support anyone who is filing because their bodies just cannot take it anymore.
For me, I have to believe that the science of medicine will not fail me. I have made it through years of status migranosis, only to have a six month break, before a car accident took everything away from me. My career, my self esteem, my spark. It was a dark and scary place. I couldn't LET the pain win, but what I was really doing was not allowing myself to heal. I would cry the whole way home, every night from work because driving was excruciating. Had shoulder reconstruction, which only fixed 10% of the problem (an impingement) and was left with scar tissue surrounding a nerve plexus. At which point I was told, this was as good as it gets. We cannot help you any further. Even though I knew better, I believed them. So I quietly suffered for a few years, I was tired of fighting for recognition that I was in excruciating pain. Finally, I was suffering from a flare in my neck that I couldn't manage on my own and sought help from my PCP. This led to spine specialists and pain management. The spine doc told me that he couldn't do much, so here is an Rx for Neurontin. By dose three I was in the ER for anaphylaxis. 22 hours later, after the rescue meds wore off I was back in the ER via ambulance. After which I was written off by the Spine Doc who sent me to a chronic pain program. Who, while they successfully treated the nerve pain, refused to fully evaluate my musculoskeletal issues. No one in this hospital system would treat me because of the doctor who had been in charge of my care at the program. Apparently, he has a bit of a God complex, despite being a Psychiatrist who specialized in Chronic Pain and gets pissy when others treat his patients.
So another year went by and I finally switched hospital systems and sought treatment with a physical medicine doctor. First thing I told him was, I don't want narcotics. I want to be evaluated, something is wrong. He agreed. I started Physical Therapy that focused on pain management and breaking up the scar tissue that was the root of the issue and had left me with Myofascial Syndrome. I was also referred to an osteopath. A year ago, the osteopath had just finished a session (this man is a miracle worker who needs to be cloned) on my spine. He said, something isn't right, you should be feeling better. We discussed my symptoms: Weight gain, Horrid Fatigue, Vague flu-like episodes, fevers, diffuse joint pain. It had all come on gradually, while I'd been dealing with another slice of hell. It had gotten to the point where I couldn't tell you where one pain ended and another began. I was at the bottom of a cauldron full of dark black goo.
He decided that I needed to be screened for autoimmune diseases. My Sed Rate was 58, my CRP was 1.5, but my RF was only 8 and ANA, etc were negative. He told me, your case isn't clear cut, but you need to see a rheumatologist. You won't get better overnight, but there have been so many advances in rheumatologic medicine, you can be treated.
Three doctors later, I have a vague diagnosis and am in my second week of a chemotherapeutic drug called Methotrexate.
While most days I don't feel great and it is really hard to remember that I AM better than I was a year ago. I can walk. My morning stiffness only lasts 1.5 to 2 hours vs 3 to 4. I only need a 1 hour nap per day. Where before I could sleep 3 or 4 hours in the afternoon and still head to bed that night.
I still don't sleep through the night, pain wakes me up, but it IS better than it had been.
All of this came to mind after reading this article: When You're Not Sick Enough on But You Don't Look Sick
Someone in the comments section recommended the link below. I recalled, from some of my darker times over a year a go, perusing this website. Most Disability cases get refused the first time, especially when the person is filing without legal assistance.
Allsup
We don't look sick on the outside, so we must be fine. Right? Wrong!
Every step I have taken in the last two years has been directly 180 degrees away from filing for disability, even when I couldn't get out of bed to pee or take more pain meds. Mentally, at this point, I just cannot even think about it.
That said, I completely support anyone who is filing because their bodies just cannot take it anymore.
For me, I have to believe that the science of medicine will not fail me. I have made it through years of status migranosis, only to have a six month break, before a car accident took everything away from me. My career, my self esteem, my spark. It was a dark and scary place. I couldn't LET the pain win, but what I was really doing was not allowing myself to heal. I would cry the whole way home, every night from work because driving was excruciating. Had shoulder reconstruction, which only fixed 10% of the problem (an impingement) and was left with scar tissue surrounding a nerve plexus. At which point I was told, this was as good as it gets. We cannot help you any further. Even though I knew better, I believed them. So I quietly suffered for a few years, I was tired of fighting for recognition that I was in excruciating pain. Finally, I was suffering from a flare in my neck that I couldn't manage on my own and sought help from my PCP. This led to spine specialists and pain management. The spine doc told me that he couldn't do much, so here is an Rx for Neurontin. By dose three I was in the ER for anaphylaxis. 22 hours later, after the rescue meds wore off I was back in the ER via ambulance. After which I was written off by the Spine Doc who sent me to a chronic pain program. Who, while they successfully treated the nerve pain, refused to fully evaluate my musculoskeletal issues. No one in this hospital system would treat me because of the doctor who had been in charge of my care at the program. Apparently, he has a bit of a God complex, despite being a Psychiatrist who specialized in Chronic Pain and gets pissy when others treat his patients.
So another year went by and I finally switched hospital systems and sought treatment with a physical medicine doctor. First thing I told him was, I don't want narcotics. I want to be evaluated, something is wrong. He agreed. I started Physical Therapy that focused on pain management and breaking up the scar tissue that was the root of the issue and had left me with Myofascial Syndrome. I was also referred to an osteopath. A year ago, the osteopath had just finished a session (this man is a miracle worker who needs to be cloned) on my spine. He said, something isn't right, you should be feeling better. We discussed my symptoms: Weight gain, Horrid Fatigue, Vague flu-like episodes, fevers, diffuse joint pain. It had all come on gradually, while I'd been dealing with another slice of hell. It had gotten to the point where I couldn't tell you where one pain ended and another began. I was at the bottom of a cauldron full of dark black goo.
He decided that I needed to be screened for autoimmune diseases. My Sed Rate was 58, my CRP was 1.5, but my RF was only 8 and ANA, etc were negative. He told me, your case isn't clear cut, but you need to see a rheumatologist. You won't get better overnight, but there have been so many advances in rheumatologic medicine, you can be treated.
Three doctors later, I have a vague diagnosis and am in my second week of a chemotherapeutic drug called Methotrexate.
While most days I don't feel great and it is really hard to remember that I AM better than I was a year ago. I can walk. My morning stiffness only lasts 1.5 to 2 hours vs 3 to 4. I only need a 1 hour nap per day. Where before I could sleep 3 or 4 hours in the afternoon and still head to bed that night.
I still don't sleep through the night, pain wakes me up, but it IS better than it had been.
All of this came to mind after reading this article: When You're Not Sick Enough on But You Don't Look Sick
Someone in the comments section recommended the link below. I recalled, from some of my darker times over a year a go, perusing this website. Most Disability cases get refused the first time, especially when the person is filing without legal assistance.
Allsup
THC for thought
I don't understand what legislators have against something that can potentially support so many, therapeutically, with fewer side effects.
Arthritis & Medical Marijuana
Most don't care if they have to pay taxes on it. I know I don't.
It is a plant that actually enriches the soil. Commercial Hemp (which is also illegal, despite the fact that it contains no THC. Simply because it puts off the same heat signature and cannot be differentiated from marijuana by DEA flight inspectors) is a completely usable product. No waste. Food, paper, fabric, etc.
The list goes on and on.
Who loses? Pharmaceutical companies and everyone who's pocket is lined by them.
Not the patient.
With my career, being a full time student who uses student loans, etc. I cannot justify using something that is illegal to treat myself. However, I can hope that one day this silliness will pass and we will have relief.
This is available at Zazzle.com
Hmmm . . . in some states it is legal for chemo patients to be prescribed legally . . . . Just saying . . . . Cheers folks.
Just popped my second dose of Methotrexate. Mentally crossing my fingers, hoping that I don't feel horrible tomorrow.
Arthritis & Medical Marijuana
Most don't care if they have to pay taxes on it. I know I don't.
It is a plant that actually enriches the soil. Commercial Hemp (which is also illegal, despite the fact that it contains no THC. Simply because it puts off the same heat signature and cannot be differentiated from marijuana by DEA flight inspectors) is a completely usable product. No waste. Food, paper, fabric, etc.
The list goes on and on.
Who loses? Pharmaceutical companies and everyone who's pocket is lined by them.
Not the patient.
With my career, being a full time student who uses student loans, etc. I cannot justify using something that is illegal to treat myself. However, I can hope that one day this silliness will pass and we will have relief.
This is available at Zazzle.com
Just popped my second dose of Methotrexate. Mentally crossing my fingers, hoping that I don't feel horrible tomorrow.
Wednesday, January 18, 2012
Day #2 back to school.
Day one was rough, I was on campus all day, from 9:30a to 6:30p.
Fortunately Wednesdays and Thursdays are semi-light, class wise. Which means I can rest between classes and get some studying done. So when I am home, I am HOME!!!!
Sorry for the short post today I'm exhausted, need to shower and have a phone meeting with a classmate from my first degree regarding Shaklee Vitamins and Supplements. She battles an autoimmune condition and utilizes many of their products for support.
Fortunately Wednesdays and Thursdays are semi-light, class wise. Which means I can rest between classes and get some studying done. So when I am home, I am HOME!!!!
Sorry for the short post today I'm exhausted, need to shower and have a phone meeting with a classmate from my first degree regarding Shaklee Vitamins and Supplements. She battles an autoimmune condition and utilizes many of their products for support.
Monday, January 16, 2012
Customer Complaint . . . Swimsuitsforall.com
Do not use this company for your swimsuit needs. www.swuimsuitsforall.com
I placed an order on 1/9, because I needed a swimsuit for Physical Therapy. On 1/11, I received an email citing that part of my order was out of stock and could I please contact them to select a suitable replacement.
I did so, but there phone service kept cutting out and they were having problems with my card.
I requested that my order be cancelled. I was told that it had been. Later that day, another charge from them appeared. I called SSFA, but could not get through to a person; I sent an message through their website while on hold. So, I called my bank to dispute it, while I was on the phone with my bank, the charge was rescinded. Later that day, it disappeared from my ledger.
Then over the weekend, the charge re-appeared on my account. I just got off of the phone with my bank & SSFA. My bank will refuse the charges as soon as it is a firm charge.
SSFA told me that they couldn't stop the order, so it was shipped. Therefore, I was charged.
They couldn't help me unless they received the product back. Why was the product shipped? I cancelled the order over the phone with one of their CSRs on 1/11/12. It was shipped 1/12/12.
I have filed a complaint with the Better Business Bureau of NJ.
UPDATE 1/18/12
The manager called and is issuing my refund. I have notified the BBB through their claim service.
The emailed refund receipt cites that two bottoms and a top (I had ordered one top and one bottom) were shipped . . . really? They screwed up their screw up.
I am not confidant in this, but I feel that if I had not contacted the BBB, I would still be chasing them.
It's hard enough dealing with the horrible meds to treat the horrible condition, but then to deal with horrible service for an item that you needed so you can feel better (Physical Therapy)!
UPDATE 1/19/12
So I checked my bank ledger online this morning and the charge in question has dropped off, but then another charge appeared firm (not pending) on my account!!!!! Horrible, Horrible Company.
I contacted the BBB of NJ AGAIN!
UPDATE 1/24/12
So today SSFA refunded PART of the amount to my account today, minus $14.95.
I own a small business and have worked in many positions where a refund has been in order on behalf of user error with the machine. Whether said machine be a Point of Sale Terminal, an eTerminal or Quickbooks Pro. I know that it is NOT that hard to process a refund, I've done them for clients, and when an error has been discovered through audit of charges as an employee/admin.
I have used the lovely "Print Screen" function and Photoshop to save these transactions as jpeg files. Uploaded said files to Public Folders in my Photobucket account and submitted a link to each to the BBB of NJ's eBinder of my Complaint.
Tomorrow, not only will I be contacting my bank, but I will also be contacting the manager, Wendy, at SSFA, LLC & the BBB of NJ.
People make mistakes. It is part of being human. However, this is downright negligent on their part!
UPDATE 1/25/12
I received the following response from BBB of NJ:
***The company has decided to stand by its original decision regarding your complaint.
We regret that we have been unable to assist in resolving this complaint to the satisfaction of everyone involved. Your complaint will remain on file and will be used by BBB when preparing a report on the company. ***
So, they are standing firm in they decision to refund an unauthorized charge to my account?!!!!
I was on hold with the Fraud Dept at my bank, who was able to contact SSFA and the funds will be refunded today and should appear back in my account by tomorrow.
Update 1/26/12
Overnight, the refund had posted to my account, as a "Credit for Debit Card Dispute". Yesterday evening I received the following email from the company's Social Media Consultant:
Okay, MissXXXXXXXXX!
All has been handled. I spoke to the "Powers That Be" and your $14.95 has been refunded to you. It was an oversight on our part and we are terribly sorry for the frustration. Would you do me the kindness of posting on the thread that we have on Facebook stating that we did resolve your issue so that I can send it to the BBB of NJ and let them know we DID handle this for you? Or, you can just write me back in this letter and let me know if we have satisfied you with this resolution. I would so greatly appreciate that.
As a token of apology, when you order from us again, please use the code "XXXXXXX", which is my personal code. That will get you free shipping on your next order. There is also a flash sale going on right now with up to 50% off all merchandise. Details are on our FB page.
If you have any problems with us in the future or need any questions answered regarding our merchandise, you have my personal email now. Make sure to contact me and I will take good care of you! Please write me back and let me know you got this email. Thanks!
I am saddened that it had to come to me posting on their Facebook page AND contact my bank's Fraud department to get this resolved. I was very close to contacting their merchant server regarding the situation. Fortunately, I did not have to.
Please Note: The free shipping code and my name have been removed from the response.
I placed an order on 1/9, because I needed a swimsuit for Physical Therapy. On 1/11, I received an email citing that part of my order was out of stock and could I please contact them to select a suitable replacement.
I did so, but there phone service kept cutting out and they were having problems with my card.
I requested that my order be cancelled. I was told that it had been. Later that day, another charge from them appeared. I called SSFA, but could not get through to a person; I sent an message through their website while on hold. So, I called my bank to dispute it, while I was on the phone with my bank, the charge was rescinded. Later that day, it disappeared from my ledger.
Then over the weekend, the charge re-appeared on my account. I just got off of the phone with my bank & SSFA. My bank will refuse the charges as soon as it is a firm charge.
SSFA told me that they couldn't stop the order, so it was shipped. Therefore, I was charged.
They couldn't help me unless they received the product back. Why was the product shipped? I cancelled the order over the phone with one of their CSRs on 1/11/12. It was shipped 1/12/12.
I have filed a complaint with the Better Business Bureau of NJ.
UPDATE 1/18/12
The manager called and is issuing my refund. I have notified the BBB through their claim service.
The emailed refund receipt cites that two bottoms and a top (I had ordered one top and one bottom) were shipped . . . really? They screwed up their screw up.
I am not confidant in this, but I feel that if I had not contacted the BBB, I would still be chasing them.
It's hard enough dealing with the horrible meds to treat the horrible condition, but then to deal with horrible service for an item that you needed so you can feel better (Physical Therapy)!
UPDATE 1/19/12
So I checked my bank ledger online this morning and the charge in question has dropped off, but then another charge appeared firm (not pending) on my account!!!!! Horrible, Horrible Company.
I contacted the BBB of NJ AGAIN!
UPDATE 1/24/12
So today SSFA refunded PART of the amount to my account today, minus $14.95.
I own a small business and have worked in many positions where a refund has been in order on behalf of user error with the machine. Whether said machine be a Point of Sale Terminal, an eTerminal or Quickbooks Pro. I know that it is NOT that hard to process a refund, I've done them for clients, and when an error has been discovered through audit of charges as an employee/admin.
I have used the lovely "Print Screen" function and Photoshop to save these transactions as jpeg files. Uploaded said files to Public Folders in my Photobucket account and submitted a link to each to the BBB of NJ's eBinder of my Complaint.
Tomorrow, not only will I be contacting my bank, but I will also be contacting the manager, Wendy, at SSFA, LLC & the BBB of NJ.
People make mistakes. It is part of being human. However, this is downright negligent on their part!
UPDATE 1/25/12
I received the following response from BBB of NJ:
***The company has decided to stand by its original decision regarding your complaint.
We regret that we have been unable to assist in resolving this complaint to the satisfaction of everyone involved. Your complaint will remain on file and will be used by BBB when preparing a report on the company. ***
So, they are standing firm in they decision to refund an unauthorized charge to my account?!!!!
I was on hold with the Fraud Dept at my bank, who was able to contact SSFA and the funds will be refunded today and should appear back in my account by tomorrow.
Update 1/26/12
Overnight, the refund had posted to my account, as a "Credit for Debit Card Dispute". Yesterday evening I received the following email from the company's Social Media Consultant:
Okay, Miss
All has been handled. I spoke to the "Powers That Be" and your $14.95 has been refunded to you. It was an oversight on our part and we are terribly sorry for the frustration. Would you do me the kindness of posting on the thread that we have on Facebook stating that we did resolve your issue so that I can send it to the BBB of NJ and let them know we DID handle this for you? Or, you can just write me back in this letter and let me know if we have satisfied you with this resolution. I would so greatly appreciate that.
As a token of apology, when you order from us again, please use the code "
If you have any problems with us in the future or need any questions answered regarding our merchandise, you have my personal email now. Make sure to contact me and I will take good care of you! Please write me back and let me know you got this email. Thanks!
I am saddened that it had to come to me posting on their Facebook page AND contact my bank's Fraud department to get this resolved. I was very close to contacting their merchant server regarding the situation. Fortunately, I did not have to.
Please Note: The free shipping code and my name have been removed from the response.
Ergonomics
You've probably seen the chair rolls, the wrist bumpered mouse pads, etc. Heck, you may have even been sent home with stuff from PT or OT. Lord knows I have.
Whilst out shopping with a friend at a large craft store, I came across the Creative Comfort line (See Links below from Amazon).
She and I both have orthopaedic issues. She's actually scheduling to see my new rheumy shortly. All of our issues started after injuries. Back Pain, Joint Pain, etc.
We both thought this would be extremely useful in our homes, Creative Comfort Posture Pillow. We will both be buying them.
Another item I found, Creative Comfort Elbow Rest, felt wonderful, just rolling it around and squeezing it in my hand. Almost like a massage on all my painful synovial joints.
I've also found that holding a phone can be torture. I purchased this, Mono Ear Bud, one for the car and one for home. It works well, not like inline mics of days gone by. My mom can hear me well, weather I'm driving (minimal background noise) or at home.
I will be posting pics of other ways to help stay comfortable while doing things around the house.
Have a great day. Please take a moment to remember Dr. Martin Luther King, Jr. today . . . . "Free at last . . ."
Whilst out shopping with a friend at a large craft store, I came across the Creative Comfort line (See Links below from Amazon).
She and I both have orthopaedic issues. She's actually scheduling to see my new rheumy shortly. All of our issues started after injuries. Back Pain, Joint Pain, etc.
We both thought this would be extremely useful in our homes, Creative Comfort Posture Pillow. We will both be buying them.
Another item I found, Creative Comfort Elbow Rest, felt wonderful, just rolling it around and squeezing it in my hand. Almost like a massage on all my painful synovial joints.
I've also found that holding a phone can be torture. I purchased this, Mono Ear Bud, one for the car and one for home. It works well, not like inline mics of days gone by. My mom can hear me well, weather I'm driving (minimal background noise) or at home.
I will be posting pics of other ways to help stay comfortable while doing things around the house.
Have a great day. Please take a moment to remember Dr. Martin Luther King, Jr. today . . . . "Free at last . . ."
Saturday, January 14, 2012
Marijuana for pain management . . .
Just received this link: Marijuana Smoking Does Not Harm Lungs, Study Finds, NY Times
Since marijuana is illegal in my state, for medical use or otherwise, I do not use it. However, should it become legal, I would gladly purchase it from a dispensary and pay the necessary taxes. It is healthier than many of the other toxic substances we use to treat our conditions.
FWIW . . . .
Since marijuana is illegal in my state, for medical use or otherwise, I do not use it. However, should it become legal, I would gladly purchase it from a dispensary and pay the necessary taxes. It is healthier than many of the other toxic substances we use to treat our conditions.
FWIW . . . .
How to explain to others . . . .since outwardly we don't look sick.
Hands down, I still like the Spoon Theory, when trying to explain how you feel. Christine Miserandino's The Spoon Theory This is a useful tool for many, as it can apply to nearly all "invisible" diseases: Fibromyalgia, Rheumatoid Arthritis, Psoriatic Arthritis, Chronic Depression, Lupus, Cancer, etc. The list is longer than my hands will let me type.
I have a bumper sticker on my car from Zazzle.com, but cannot seem to find it . . . here's one, though Autoimmune Arthritis Awareness bumper sticker from the IAA Movement
I do have a handicapped placard, for use at school and if necessary while out and about. I have gotten some pretty nasty looks from others, when I park there. Keep in mind, if there is a non-handicapped spot close by, I will ALWAYS park there. So as to leave the handicapped spot available for someone who may not be as lucky to find a close spot when they need it. My Bumper Sticker says, If you want to know why I am parking here, ASK. I am not lazy, I have autoimmune arthritis. Disability does not have an age requirement. On good days, I park as far away from the door as possible; taking full advantage of my body allowing me to move without pain (or with little pain, since I am rarely pain free).
Zazzle also has some amusing shirts (note, I am not affiliated with any of these sites financially; I just find them helpful). My favorite is "Today my immune system attacked my own body. What did yours do?"
It is really hard to explain to someone who really doesn't know anything about autoimmune conditions, how bad things can really be.
The fact that you're exhausted, which is due to the overwhelming percentage of cytokines going through our blood stream (others feel this when they get the flu or a bad cold with a fever; it is a hallmark of the autoimmune response), without much activity. Your low grade fever. My joints rarely swell, so it is really hard to tell outwardly that I feel like crap.
Couple this with not having a true diagnosis, or still waiting on a diagnosis, and you may find very few people who understand. Some may not even believe you (I hope you never have to go through this).
There are so many support groups out there . . . I hope you find one that keep you up, when you are at the bottom . . . Have a great weekend.
I have a bumper sticker on my car from Zazzle.com, but cannot seem to find it . . . here's one, though Autoimmune Arthritis Awareness bumper sticker from the IAA Movement
I do have a handicapped placard, for use at school and if necessary while out and about. I have gotten some pretty nasty looks from others, when I park there. Keep in mind, if there is a non-handicapped spot close by, I will ALWAYS park there. So as to leave the handicapped spot available for someone who may not be as lucky to find a close spot when they need it. My Bumper Sticker says, If you want to know why I am parking here, ASK. I am not lazy, I have autoimmune arthritis. Disability does not have an age requirement. On good days, I park as far away from the door as possible; taking full advantage of my body allowing me to move without pain (or with little pain, since I am rarely pain free).
Zazzle also has some amusing shirts (note, I am not affiliated with any of these sites financially; I just find them helpful). My favorite is "Today my immune system attacked my own body. What did yours do?"
It is really hard to explain to someone who really doesn't know anything about autoimmune conditions, how bad things can really be.
The fact that you're exhausted, which is due to the overwhelming percentage of cytokines going through our blood stream (others feel this when they get the flu or a bad cold with a fever; it is a hallmark of the autoimmune response), without much activity. Your low grade fever. My joints rarely swell, so it is really hard to tell outwardly that I feel like crap.
Couple this with not having a true diagnosis, or still waiting on a diagnosis, and you may find very few people who understand. Some may not even believe you (I hope you never have to go through this).
There are so many support groups out there . . . I hope you find one that keep you up, when you are at the bottom . . . Have a great weekend.
Friday, January 13, 2012
Arthritis Awareness
There are so many causes for Inflammatory Arthritis, so many specifics that are not quite understood by science yet.
I really like the RAWarrior.com blog
I found this store this morning http://www.zazzle.com/awarenessgifts/gifts?cg=196064876863638600
It is snowing and the weather like this usually make me hurt more. However, yesterday I was dealing with the side effects of my first methotrexate dose. It wasn't horrible, but it certainly wasn't pleasant.
So with school starting back up this week, I am planning on my next dose being next Saturday. That way I have Sunday to recover. Others have told me, that with time, the side effects will lessen . . .
I really don't care, especially if it is just like yesterday. I just hope that it works. Hope my body responds appropriately. Oh what I would do to have a day that I could get out of bed on my terms, not have to schedule to wake up an hour before I need to be moving, so I can walk once I am out of bed.
With the weather today, my feet felt crushed before I even got moving. Especially during my stretches. When I got up, it was like walking on broken glass. Hard to balance. However, it has been worse.
Have a good weekend all!
I really like the RAWarrior.com blog
I found this store this morning http://www.zazzle.com/awarenessgifts/gifts?cg=196064876863638600
It is snowing and the weather like this usually make me hurt more. However, yesterday I was dealing with the side effects of my first methotrexate dose. It wasn't horrible, but it certainly wasn't pleasant.
So with school starting back up this week, I am planning on my next dose being next Saturday. That way I have Sunday to recover. Others have told me, that with time, the side effects will lessen . . .
I really don't care, especially if it is just like yesterday. I just hope that it works. Hope my body responds appropriately. Oh what I would do to have a day that I could get out of bed on my terms, not have to schedule to wake up an hour before I need to be moving, so I can walk once I am out of bed.
With the weather today, my feet felt crushed before I even got moving. Especially during my stretches. When I got up, it was like walking on broken glass. Hard to balance. However, it has been worse.
Have a good weekend all!
Wednesday, January 11, 2012
The Monster Has a Name
I saw my third rheumy today. She was recommended by an acquaintance. She seems like a really good fit. She's a few years older than me. I just get a good vibe from her.
She says I have Inflammatory Arthritis, that's as close as we can get to a real name and I am okay with that. I also have Osteoarthritis (which is being exacerbated by the IA) and Secondary Fibromyalgia.
I started Methotrexate today. 10 mg.
It's been 3 hours since I took it. So far, no GI upset.
So, we'll see. I follow up in 8 weeks.
She says I have Inflammatory Arthritis, that's as close as we can get to a real name and I am okay with that. I also have Osteoarthritis (which is being exacerbated by the IA) and Secondary Fibromyalgia.
I started Methotrexate today. 10 mg.
It's been 3 hours since I took it. So far, no GI upset.
So, we'll see. I follow up in 8 weeks.
Thursday, November 17, 2011
One step closer to a more concise treatment plan.
So, the wonky spot on my hand is Morphea. A localized form of scleroderma. For now, I'm to use the meds he prescribed for the dishydrotic eczema on my feet. I follow up with my rheumy after finals next month.
My feet are starting to feel better, as far as the eczema goes. The cracks have healed.
I'd been fighting some kind of bug, but apparently am over it as of today. I woke up feeling wrecked, my joints hadn't really hurt in about 5 days. A small part of me was hoping that maybe my immunosuppressants were actually starting to work . . . . The only real symptom was feeling run down. Which is normal for me, but this was run down with minimal joint pain. .. . . .
Nope, my immune system just had something else to focus on besides attacking my body.
Now I just have to wait and see what the rheumy wants to do . . . .
My feet are starting to feel better, as far as the eczema goes. The cracks have healed.
I'd been fighting some kind of bug, but apparently am over it as of today. I woke up feeling wrecked, my joints hadn't really hurt in about 5 days. A small part of me was hoping that maybe my immunosuppressants were actually starting to work . . . . The only real symptom was feeling run down. Which is normal for me, but this was run down with minimal joint pain. .. . . .
Nope, my immune system just had something else to focus on besides attacking my body.
Now I just have to wait and see what the rheumy wants to do . . . .
Sunday, November 13, 2011
Dermatology Appointment
I saw dermatology this week. They've performed a biopsy on the wonky patch of skin on my hand. It hasn't even bee there for a month, so it is hard to tell what is going on. Slight possibility it could be morphea, which is a form of limited scleroderma. I was also diagnoses with dishidrotic eczema on my feet. I am a walking conglomeration of autoimmune labels, BUT I am walking!!!!
As many autoimmune patients know, it is not uncommon for there to be an overlap of conditions. In fact, many of these conditions start with similar symptoms: diffuse joint pain, fatigue, etc.
I read an article yesterday. Should've saved the link. That discussed that managing an autoimmune condition is a team approach. Which is how my new rheumy is treating me. The author said, a rheumatologist may feel that the patient is doing well and may even be considered to be in "medically induced remission" (what we all strive for!). However, if that same patient is seen by their ophthamologist, the ophtho may notice changes (sclerosis of the cornea for example, but the list is nearly endless) that will indicate the complete opposite. In fact, the author even said, if the previously stated situation is noted, the patient needs to be treated more aggressively. If not, they may find that in 3 to 6 months their health mat decline significantly.
Now, while this is just one article, with just one author. If is not the first time that I have heard of the team approach, it is just the first time that I have heard it described in such distinct detail. It is definitely worth looking into.
Don't let yourself down. If you feel something needs to be evaluated further or that you need another opinion, get it. You may find that everything is okay, but at least you know for sure!!!
As many autoimmune patients know, it is not uncommon for there to be an overlap of conditions. In fact, many of these conditions start with similar symptoms: diffuse joint pain, fatigue, etc.
I read an article yesterday. Should've saved the link. That discussed that managing an autoimmune condition is a team approach. Which is how my new rheumy is treating me. The author said, a rheumatologist may feel that the patient is doing well and may even be considered to be in "medically induced remission" (what we all strive for!). However, if that same patient is seen by their ophthamologist, the ophtho may notice changes (sclerosis of the cornea for example, but the list is nearly endless) that will indicate the complete opposite. In fact, the author even said, if the previously stated situation is noted, the patient needs to be treated more aggressively. If not, they may find that in 3 to 6 months their health mat decline significantly.
Now, while this is just one article, with just one author. If is not the first time that I have heard of the team approach, it is just the first time that I have heard it described in such distinct detail. It is definitely worth looking into.
Don't let yourself down. If you feel something needs to be evaluated further or that you need another opinion, get it. You may find that everything is okay, but at least you know for sure!!!
Thursday, October 27, 2011
Coping with Fatigue
While this article was written specifically for Rheumatoid Arthritis patients, the author openly admits that it can apply to many other chronic conditions. Just as The Spoon Theory, while written for Lupus, applies to the rest of us as well.
http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp
These conditions make us balance our priorities. That isn't necessarily a bad thing.
http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp
These conditions make us balance our priorities. That isn't necessarily a bad thing.
Sunday, October 16, 2011
So now I may not even have SAPHO
I went for a second opinion with a different hospital system. The one that wouldn't treat my musculoskeletal pain, but that has since been resolved (by the system that did treat me and also discovered my autoimmune condition).
I tried to get in with their regional(neighborhood) health center, but was told that they don't treat SAPHO so I had to go to main campus to their Rheumatology Institute. My new doctor is wonderful, she is a rheumatology fellow and her mentor is very kind and well accredited rheumy. They got me in in two days, sure beats waiting three months to see my original rheumy!
They ran different labs and repeated some old ones.
My level of inflammation is down significantly, but symptomatically, I don't feel it. So maybe the DMARDs are helping.
I had a bone scan last Thursday, to confirm or deny SAPHO and to see if they can get a better idea of what is going on.
It's rainy today and I'm feeling it. want to sleep, but gotta get some of this stuff done!
I tried to get in with their regional(neighborhood) health center, but was told that they don't treat SAPHO so I had to go to main campus to their Rheumatology Institute. My new doctor is wonderful, she is a rheumatology fellow and her mentor is very kind and well accredited rheumy. They got me in in two days, sure beats waiting three months to see my original rheumy!
They ran different labs and repeated some old ones.
My level of inflammation is down significantly, but symptomatically, I don't feel it. So maybe the DMARDs are helping.
I had a bone scan last Thursday, to confirm or deny SAPHO and to see if they can get a better idea of what is going on.
It's rainy today and I'm feeling it. want to sleep, but gotta get some of this stuff done!
Monday, September 5, 2011
So tired!
It's a holiday weekend, it's winding down and I over did it. Friday night I recouped from my week, picked up Chinese food on my way home and vegged with my hubby. I was asleep by 10:30p. Saturday, we went to a friends house for a poker game. I don't play, but my hubby does. I took some homework and worked on that for a bit, chit chatted and just hung out. Stayed up til 3 am, by the time we got home.
Yesterday we had a business meeting, lasted longer than expected, but I got to chat with another lady who has an undiagnosed autoimmune condition. It's nice to meet someone else face to face who knows exactly what you're going through. On our way home, we stopped at our friends' house (where the poker game took place) because I had left a few things there. Ended up chit chatting for way to long, but it was great to spend time.
Last night wasn't asleep until 4am. Ugh. I am so frustrated that I cannot physically handle, what feels like anything, anymore. So tired of being tired. Blah!!!
Yesterday we had a business meeting, lasted longer than expected, but I got to chat with another lady who has an undiagnosed autoimmune condition. It's nice to meet someone else face to face who knows exactly what you're going through. On our way home, we stopped at our friends' house (where the poker game took place) because I had left a few things there. Ended up chit chatting for way to long, but it was great to spend time.
Last night wasn't asleep until 4am. Ugh. I am so frustrated that I cannot physically handle, what feels like anything, anymore. So tired of being tired. Blah!!!
Sunday, August 28, 2011
Can't Sleep
I must admit, I'm laying in bed writing from my phone.
I'm excited to start classes tomorrow! Cell Bio, Chemistry, Anatomy & Physiology I, Native American Lit.
I adore learning.
This will be my first semester at this university. Last year, when I first started back to school, I took classes at a community college to save $$$$.
I am also nervous. Will I be able to find a close enough parking space. Will my pain meds be enough to get me through the day. I have been having a lot of trouble walking this past week, it's been very painful.
These are things I didn't have to worry about 15 years ago when I went for my first degree.
And then there are the financial concerns that go with being a student at any point in life. I really need to get a part time job on campus. I had an interview for one last week and have been asked for more info for two others in the last few weeks.
While I am licensed to do a job that pays much more. It would be easier to have something where I don't have to travel further. Sometimes the energy that that takes, takes it all out of me.
I really want to try a different line of meds. I need my energy back. I need to live my life!
I'm excited to start classes tomorrow! Cell Bio, Chemistry, Anatomy & Physiology I, Native American Lit.
I adore learning.
This will be my first semester at this university. Last year, when I first started back to school, I took classes at a community college to save $$$$.
I am also nervous. Will I be able to find a close enough parking space. Will my pain meds be enough to get me through the day. I have been having a lot of trouble walking this past week, it's been very painful.
These are things I didn't have to worry about 15 years ago when I went for my first degree.
And then there are the financial concerns that go with being a student at any point in life. I really need to get a part time job on campus. I had an interview for one last week and have been asked for more info for two others in the last few weeks.
While I am licensed to do a job that pays much more. It would be easier to have something where I don't have to travel further. Sometimes the energy that that takes, takes it all out of me.
I really want to try a different line of meds. I need my energy back. I need to live my life!
MyLot . . .
So as you already know, I am a full time student.
What are full time students? POOR, of course!!! Especially when a lot of your $$$$ goes to meds and devices to aid in your comfort and success (like my new Olympus WM-710 Digital Voice Recorder!!!).
MyLot is a way to make a few extra bucks a month! Check it out:
myLot User Profile
What are full time students? POOR, of course!!! Especially when a lot of your $$$$ goes to meds and devices to aid in your comfort and success (like my new Olympus WM-710 Digital Voice Recorder!!!).
MyLot is a way to make a few extra bucks a month! Check it out:
myLot User Profile
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