Friday, April 27, 2018

Do As I Say NOT As I Do...

Well, after dealing with two doctors one who lost his marbles and another doctor that can't see to manage calling back Mayo Clinic (right?!?!) I'm down two doctors. When I saw my shrink last week she told me that I'm broken when it comes to doctors, my inability to trust them to actually do their jobs or think they even have my best interests at heart is pretty much gone. When you are a man who can't breathe due to allergies you are taken seriously, when you are a girl...forget about it you must be nuts. Why are doctors never aware of how much stress they put on the patient...but that's right I'm just crazy. So, all of this started with a rash I've had for years, I was silly enough to believe that someone might actually be able to fix it (or just figure out what the heck it was) 8 months later still in the process of being diagnosed (we still have no idea what the rash is about) we are now messing in my immune system. I don't meet the criteria for Mayo, I guess I'm still not sure what type of information they actually sent there (I have a bad feeling calling for myself would have gotten me much further than having my doctor send my records).

I'm two doctors down and I have finally decided to take a break for the next 3 months I'm not going to anymore doctors (besides my pain doctor and that I have no choice I have to go), I'm taking the summer off. Does this mean I'm well, nope. This is where the "do as I say not as I do" comes in. I have quit all of my social media accounts (except my personal one) while I take these 3 months off because I don't want anyone to think what I'm doing is the right thing but I think it will be interesting to get some of the more crazy issues that I've had with doctors out of my head and down on paper. I'm taking care of myself emotionally and will be doing my best to take care of my body as I can. I hope there will be no trips to the emergency room (seeing as I have no PCP) and that because it's soon to be summer and my body does well when it's warm.

I have an appointment in August with a woman Immunologist that I'm really interested in seeing (which my pcp told me was too long to go without seeing a doctor) so that will be my first appointment when the summer is over. All I can ask for at this point is good luck (she says with hives all over her hands). And that my body is as tired of seeing doctors as my head is.

This is called "don't try this at home kids" if I can't be a good role model then at least I can be a bad one. Lots more blogs about the thoughts in my head and how they pertain to the medical community maybe if I can get it all out I can start over in August.

Friday, March 10, 2017

Hello Colon...We Have A Plan!

Have I mentioned how much I enjoy my Gastro doctor? He's calm and soft voiced, I often feel things are going to get easier, even if it takes time. He's the only doctor that when I walk out the door I leave knowing somehow I'm going to get better.

As most of you know I've been off steroids for a week (wow!). I knew while weaning the closer I got the worse my GI tract would get. After all, steroids are anti-inflammatory and issues that were under control (ie, inflammation in my joints and organs) were about to show themselves. To be honest, I never would have guessed it would be my GI tract, I was more concerned about my joints.

I should have been aware about reflux since my insurance decided to stop paying for PPI's (proton pump inhibitors). For my husband who had never tried an OTC before this is ok, for me, its been a nightmare. I was already on a double dose of prescription meds, we worked hard to find something that would work against my GERD/Hiatal Hernia. I had tried 4 different OTC PPI's/acid reducers without luck. I had two choices left Zegrid and Nexium, I use one or the other for 2 or 3 weeks then it stops working and I change to the other for 2 or 3 weeks. As you might imagine this is not a great way to handle reflux. My stomach is getting worse to the point of losing 10 pounds and not eating until I was starving, then dealing with the consequences.

The consequences? Well, let's talk about my colon. I have IBS, for me it isn't about constipation or diarrhea but about spasms in my abdomen when my colon is angry. The spasms are so strong it feels las if I'm in labor on my left side. They're so bad the day after I have pain in my colon because it spasmed so hard. Like when you work out for the first time after a long time and ache the next few days. All the pain with no benefits from working out. A couple of years ago I was diagnosed with IBS after a 10 day hospital stay where I took 2mg IV morphine every 4 hours for 6 days for cramps/spasms. It was horrible, eventually they figured out it was my colon instead of my kidney (which I had originally thought) and put me on Bentyl. I didn't need morphine after I started on Bentyl ( my doctors were happy). I took Bentyl 4 times a day and eventually every once in awhile I would have spasms, I was able to wean to 2 pills daily

My whole GI tract is angry, top to bottom. My Gastro doc agreed that it's definitely the lack of steroids making things difficult. He had me jump on the table and pushed on three spots (yes, I learned an anatomy lesson, who knew your colon was right under your ribs) each spot had me nearly jumping off the table. He sat me down and told me my colon was angry, when he pushed down it spasmed (I knew that, ouch). Now I'm thinking, yay my body did what it should at the right time, then we made a plan...

What I really like about my doctor is, when you leave his office you have a plan, if that fails, he lets you know what's next, it's unusual. We talked things back and forth, adjusted things that he hadn't thought about and he had ideas I hadn't thought about. It was a collaboration and one I thought I could handle. Here it is, I'll start taking prescription PPI's for 10 days (he gave me samples). This will help my stomach calm down so I can eat. He wants to raise my Bentyl to 4 pills a day and see if my colon settles down. If it continues to be painful I'll call and get a CT Scan of my abdomen, if it doesn't show anything he'll do an upper/lower endoscopy.

What I like about this plan is 10 days to do things the easy way. I was sure I'd be scheduling a scope and when he said lets wait I thought 10 more days, ugh! Thankfully, he gave me options to try during this time. I hope things settle down (I'm not sure what happens when I start back on the OTC PPI I'll worry about that then). The idea of waiting to get my body further into the withdrawal of steroids and give it a chance to start making more cortisol so things settle down on their own.

I can't tell you how excited I am to take the  PPI tonight, I hope soon I'll be eating normally, I have missed vegetables. I never realized how good a salad tastes. One thing I learned today (besides where my colon is) is all of my doctor appointments need to be like this. I'm doing less doctoring, (thank goodness) so when I do get to the office I need to make sure the 15 minutes count. I'll ask for a plan of attack at all my appointments because I have a life, and new goals I want to accomplish. I want to spend and effort on these new ideas instead of wondering what's next in doctoring.

Tuesday, September 6, 2016

When I Forget and Try to Act Normal...Or...Is Massage Supposed to Hurt?

Yesterday I was finally able to get my hair cut and colored (I had waited over a year and with growing my grey out my daughter's friends were starting to think I was her grandma and not her mom, yikes). After sitting in the chair for about an hour my back was very happy to get up and move a bit when it was time to wash my hair (of course my neck didn't agree.).

I moved to the chair in front of a big sink and hoped it would be a quick wash because my neck was in this weird position and then she started massaging my scalp and all sense went right out the window. So when my stylist asked me if I wanted a hand massage the goo that was my brain at that moment was thinking more happy muscles, yay! I said yes, please! She gave me a 2 minute rub on each hand that felt lovely with the thickest moisturizer I have ever felt (everything I picked up after I dropped). It was a beautiful little moment of selfcare by pampering what usually gets ignored. Heavenly!

I went home and went about my day (washed the moisturizer off I'm klutzy enough without help). All of the sudden around 8pm I start to get the worst pains in my hands/wrists/fingers and I remember, I'm NOT normal. I tried nsaids, pain meds (considered voodoo but it felt like someone was already stabbing my doll), nothing would relieve my pain. At this point I remembered how painful a massage on my neck and shoulders was and I knew my massage days are coming to an end.

Unlike most people a massage is practically torture for me. I used to have therapeutic massage on my neck and shoulders in PT 3 times a week for months. It hurt so badly that after a few months I would cry in the middle of my massage. I realize therapeutic massage is done with the idea that going deep and pressing hard should hopefully relax and lengthen your muscles and sometimes it hurts. For me it hurt all the time. One appointment with my shoulder surgeon consisted of him moving my arm around and feeling the muscles on the top of my shoulder, he then asked, "are you on muscle relaxers?" He was shocked at how tight I was with muscle relaxers and massage.

Shortly thereafter I gave up massage but kept the muscle relaxers, I also had shoulder surgery and had my biceps tendon snipped to deal with the tightness in that shoulder. It's been 2 years and I have much less trouble with that shoulder.

I'm sure you're thinking I must be nuts, massages are wonderfully relaxing and calming, they can be if your masseuse knows what their doing. When I'm going for a normal massage I ask them to do a Swedish Massage for me (I think that tends to be the lightest touch massage) even then it can still be too much.

You may ask what is the best way to get a massage when every muscle in your body aches? I will give you some tips...

For me, it was finding a masseuse that listened. She told me that I was looking for a light Swedish Massage, she also asked me where it hurt the most and was aware of the areas where I might need more help. I continued to go see her exclusively because she paid attention to what my body needed and I was able to have more massages, feel less uncomfortable and more relaxed.

If you get a masseuse that "rubs you the wrong way." Tell them to stop or to rub easier if you can stand to correct them and stay for the rest of the hour. There is no point staying for a massage that you know will end up hurting you or making you worse in the end. This is one of those times it really matters how good your masseuse is, don't settle for anything less. I've had massages where I've come home and hurt for 3 days after, no massage is worth that.

After your massage drink lots of water, I don't believe the cleansing out toxins...however, I do know that it's important to stay hydrated and water is good for your body.

One last tip...when my body tightens up as it is so wont to do I either take a really hot bath/shower or I crawl under a heated blanket. Heat will relax your muscles again and hopefully let you rest comfortably until the next day.

Happy massaging....

Friday, August 26, 2016

Seriously? Another New Name....

I just took a second to update my About Me file and while I was writing I realized just how much I needed to bring things up to date, my family has been extremely busy the last 6 months.

So, last year was a hugely expensive year for our insurance company. You know when you walk away from looking at your EOB's and even you feel sticker shock (and we didn't have to pay) it's time to tone things down a bit. We had great plans until this year hit.

So far my husband has been diagnosed with hearing loss, Psoriasis and then Psoriatic Arthritis (because there wasn't enough AutoImmune Arthritis in the family). My daughter was diagnosed with Autism and ADHD on top of the EDS she already has and next February she will be having testing done for Dysautonomia (per my NeuroEP's directions). I was diagnosed with EDS Type 3, Hyperadrenergic POTs (of course the rare type that makes absolutely no sense, go me!) and IST. So our great plans didn't turn out quite as we had hoped but we still managed to save the insurance some money so far this year.

Needless to say our priorities have been elsewhere and now you know where I've been for the last 6 months (trying not to lose my marbles). I would love to say that each and every diagnosis was easy as pie but we pretty much know that never happens. I'm still trying to get my insurance to pay for genetic testing for other types of EDS ($10k and my second denial, oops) thankfully it can also be proven by clinical testing. While I'm not a contortionist I can still bend a few things in weird ways, lucky me.

My poor husband has been itching his skin like crazy. My dad also had PsA so I knew how bad the itching could be, I've never heard anyone beg for Methotrexate but he did. After about 6 visits with his Derm and 6 useless topicals he was finally able to get in to see his Rheum and got his wish for Methotrexate. Usually Friday night is date night, in our house it's Methotrexate Night, he takes the pills and I get a jab. Even at 10mg he is already starting to feel the itch go away, thank goodness. I'm not crazy about both of us taking Methotrexate at the same time but hey, our genes are what got our daughter in this mess to begin with...

Our daughter was finally tested to see what was going on with her and we were surprised to find that she had both ADHD and Autism (we expected she was on the spectrum somewhere).Thankfully, with that information we were able to get her the help she needed with an IEP that also covers her EDS. If needed we will add POTs to the list in the future.

As for me, I did a lot of doctor chasing for my POTs/EDS diagnosis. No one wanted to diagnose because I wasn't as bendy as they would like and they didn't want to hurt me. So four doctors later and a go home you're deconditioned (code word for fat and lazy) I finally got to a doctor that deals with a lot of EDS patients. He easily bent my finger back and said there it is (he did a few other movements too) I nearly cried. Then he told me I needed to stop all my meds for a tilt table test and then I did cry, all the way to the hospital in the ambulance when I had my first ever med withdrawal panic attack (I do not recommend this). After 5 days with little to no meds I wasn't able to take the test, ugh. We tried again 2 weeks later with some meds still on board (he wasn't happy with me but I wasn't going on a 72 hour hold for a psychotic break). Of course my body was contrary as always and instead of my BP going down it went up. Uhm, what??? Pretty much what he said too. Interesting thing, there is a rare type of POT's where your BP can go up or down, I'm so special. But it didn't stop there, my BP spikes while it's up. Which finally explained the chest pains I feel which no one could figure out. I got started on Verapamil and I've been doing ok so far. The EDS, seems like everyone is trying to ignore, of course from what I've heard that is normal treatment.

So, you may ask why the name change. AutoImmune for my JRA/RA, Systemic because EDS is sometimes called a Systemic Disease because it can affect all of the different systems in your body and Genetic because JRA/EDS/POTs can all be genetic or hereditary, I want to bring all of the illnesses I deal with together on one page. I know a lot about RA, I have a lot of experience. I know nothing about EDS and POTs, I'm hoping as I begin to research and learn more I'll be able to pass on this info to you so we can learn together.

Surprise, I have more co-morbidities I will be writing about. These illnesses seem to bring more with than just themselves. In no specific order I have:

Secondary Adrenal Insufficiency
Congenital Fusion at C/2-C3
Sjogren's Syndrome
Hiatal Hernia
Spina Bifida Occulta at L5

Ok, maybe there was some specific order head to toe..on days that I may have an easy RA day I may end up having a horrible Sjogren's day (scratchy, blurry eyes = no bueno). Some patients talk of good days, I very rarely have a day where something isn't going wrong but thankfully I have learned to laugh about it and be thankful for what I have. When I forget gratitude I get into trouble so I really make an issue of remembering to be thankful.

I'm hoping the new name will help me to become more than just an RA blog which is where I'm kind of stuck with my social media right now. I live with it all I want to be able to write about all of it. I hope you'll hang around and learn about the ups and downs of living with AutoImmune, Systemic and Genetic diseases.

Thursday, August 25, 2016

TOUGH and Smart? Or The One Where She Finally Gets a Clue!

You know you haven't written in a long time when you can't remember what your login in is, sheesh. I just put up a post in my support group asking them why I can't remember to take my meds on time. Well, maybe I should give you more of the backstory first.

I was a real trooper a couple of years ago, like a machine I went through every procedure, doctor visit, name it, I came out of it assuring my loved ones that I was fine and that they needn't worry. I even remember once when I was laying on the floor because my stomach hurt so badly and reassuring my mom I would be fine, I was TOUGH! My mom calls me brave...

Then I had a shoulder surgery that went well but the care after it didn't go as planned. I finally know 2 years later that instead of the Adrenal Crisis I thought I was having, I was actually having a Postural Orthostatic Tachycardia episode. It scared me so badly that I honestly believed that I might die. The attack was bad, what made it worse was that I was in the hospital and no one would listen to me about what I needed. It was the first time I felt more safe outside the hospital than in. At that point I thought steroids would help (and they did), now I know a simple bag of fluids would have made all the difference...

A huge chunk of my life changed that day. I could no longer trust my doctor or my hospital but what I didn't realize was I could no longer trust myself for putting myself there to begin with. Everything I thought I knew (and believe me that was a lot) I questioned. If I could put myself in that situation what else could I do that might turn out that wrong? I went from a TOUGH person to a passive /scared person in those 5 hours I laid in that bed worrying if I would make it. I hate it...

I hate what I have let that surgery take away from me. I know that I needed to cope and in order to do that I had to change, simply to get used to the thoughts in my head. Obviously I wasn't ready to die but I never realized that my situation was serious until that point. I think part of my TOUGH was a lot of "nothing bad is ever going to happen to me". Shocking, considering I have enough illnesses there usually aren't enough lines on the new patient forms to get them all on there. I think TOUGH meant kidding myself into believing nothing could knock me down. Wow, how those 5 hours knocked me down.

Since then I've become this person who isn't sure of anything, even after 2 years. I take more time off between doctor appointments, I put off procedures and surgeries and I continue to try to drop meds (making myself sicker, btw). It's almost as if I don't think about my health, it won't be there. Believe me, it's a difficult way to doctor and I don't recommend it.

Tonight I found myself asking my own support group why I can't seem to get on track with my meds and I thought about all of the times I preached about taking meds regularly and what a hypocrite I was. I'm feeling so worried and lost with my health that I'm stuck. I'm not helping myself and I'm definitely hurting myself by not keeping all my doctors in the loop (I was called on the carpet by my PCP a few weeks ago, yes I did get in trouble and a lecture).

I need to recommit to myself to my health. I need to take a genuine interest in my health again, I need to study my new diagnoses (this is why I hate going to doctors) and get to know them as well as I know RA and general things about it. I need to rely on other patients to help me with that "been there, done that" and "me too". I need to trust myself that even though I made a bad choice on that surgery I can still make good choices, I had been making them up until then. And I need to start making choices and getting educated.

I need to build my trust in other doctors and remember that just because they are new to me doesn't mean they aren't capable. I need to remember that I've had a surgery since then and have done well (and my foot fused and is doing well, yippee) and that since we know about POTs we can plan even better for the next time.

I also need to remember that I need to be a better role model for my daughter, she will most likely be doctoring for the rest of her life (my neuro EP thinks she may already have POTS, I guess its genetic/hereditary). I need to teach her that being tough is just one part of being ill and that she has to not rush into everything a doctor might say she needs but sit back for a minute and make an educated decision.

Maybe that's the answer, maybe there is room enough for the TOUGH person I was and the more concerned I am now. Maybe I can be both, maybe I should be both, maybe that is the lesson I've been looking for all this time. Yup, I'm a slow learner but I finally think I've learned everything I can from that time and its time to let it go. It's hard to believe that I finally got my answer 2 years later with a new diagnosis (some never get answers). It's time to recommit and find some of that person I used to be, I know shes still in there, I see glimpses of her now and if I can get her to make decisions that are thought through we'll be golden.

Welcome back, I'll be making some big changes in the next week or two. I hope you'll hang around to see what's going on!


Saturday, February 27, 2016

The One Where She Volunteers...

Growing up with JRA was pretty difficult. While I spent quite a bit of it in remission (thankfully!) I always knew I was different because of the things I wasn't able to do that other kids could. I think a lot of that had to do with the fear of somehow making the JRA come out of remission, so we all just tiptoed quietly around the really big elephant that followed me from room to room.

The Arthritis Foundation was around when I was a kid but they didn't have any kids programs. The one time I remember going to a support group with my mom I was the youngest in the group by about 60 years. We weren't going to find the kind of support that I needed there and I grew up pretty resentful because there just wasn't anywhere I could get a "me too".

I look at the "kids" that are in their 30's (and younger) now that had the benefit of JA Conference, camps and the option of staying in touch with the people that they met at camp and they seem to be coping a lot better than I did at their age (surprisingly, in my 30's is when I became attached to a usenet group I loved and I was finally able to get my first "me too" moment). The camps and Conference came about when two moms of children with JIA noticed that there wasn't any way for kids to meet and chat with one another so they got with the AF and did the work and now the children's program at the Foundation is huge. It offers camps throughout the summer and 2 conferences, one on the east and one on the west side of country. Am I thrilled for so many that get to attend? Yes, but (and you knew it was coming) I feel gypped that I was in my 20's when it happened.

I finally realized that I had 2 choices, I could go on being unhappy that I didn't have the ability to attend when I was a kid, or I could be a Disney Princess and let it go. Seeing as how I had a long history of feeling unhappy, I decided to let it go...but an interesting thing happened instead of walking away from my loss I decided to get involved.

Awhile back in a post on Arthritic Critic I wrote that we should all get involved with the foundations that were helping our type of disease get noticed. A lot of people listened to me (shocker) but I didn't listen to me (and yes, I kick myself for not taking my own advice I could have stopped this resentment a long time ago).

I went to the Arthritis Foundation website and signed up to be an Ambassador. I've already been sending letters to my local government about the bills that The Foundation are working on getting passed to better my life so being an Ambassador made sense. The part that I'm most excited about, I'm going to volunteer with JIA kids. I'm sure that will consist of working sign in or some other job like that but just being able to see things be different for kids and for me to see what is available I think will go a long way towards healing that part of me that feels gypped. I'm really quite excited about it because I'm good with kids and if both sides can get something out of it, it's a win.

I didn't think I would ever find a way to get past what I had missed but I really think doing something tangible (unlike sitting behind a computer screen) will help me feel like I'm making a difference, not just online but also out in the real world too.

Look at me all official....Arthritis Ambassador!

Sunday, February 21, 2016

The One Where She's Proud of Her Kid...

I was diagnosed when I was 2 with JRA, I had a 6 month flare and then went into remission until I was 10/12 (no one wrote it on the calendar). When it came roaring back into my life at that age I remember it was my knees that were the problem. Funny how I can't remember anything much from that time, but I can vividly remember looking at my knee as 3 people were holding me down to drain it. They had asked my mother to leave the room. Of course I loved needles as much as the average 10/12 year old.

As you can see things were done pretty differently while I was growing up with JRA, doctors were God, parents didn't have a whole lot of rights and not moving for fear of hurting ones joints was very much the practice. You can imagine my life was full of  NO. I don't think it would have been so bad if I had been an only child but I have a healthy sister. We weren't very fond of each other as kids, she got to do everything because she was healthy and I got to sit by and watch as she did everything I wanted to do. No skateboarding, no roller skating, no water skiing, no water tubing...alright, now I'm just getting petty but you get the idea. A life full of "no" for a kid who already has JRA was a total drag. I promised myself that if I should ever be so lucky to have a child of my own that had health issues I would never say no...enter payback....

I have a nephew that's about 16 months younger than my daughter (13), let's call them Jack and Jill. Well, Jack has been interested in skydiving for quite some time, so has Jill. Since I'm not letting either of them jump out of a plane I thought I was good. Enter Joe (that's my husbands real name) and his wonderful ideas. "Melissa (yeah, my name), I found a place where the kids can go skydiving and they don't have to jump out of a plane." My first thought was "oh crap," he continued to tell me about the wind tunnel place where they raise you off of the floor about 4.5 feet in the air and the first chance to not say NO to Jill presents itself. Thanks Joe, NOT!

Against my better judgement I acquiesce and say fine (in my head I'm screaming NO and think of my clumsy child with the bum ankles trying to land without breaking anything). You see my daughter has Ehlers Danlos Syndrome, that's where your muscles don't have enough collagen and they stretch a lot further than they should. She's also is very clumsy like her mother (I gave her EDS)...she broke her ankle walking on the sidewalk. The chances of her landing on her feet, while jumping out the the tunnel in one piece are slim to none.

Let's jump ahead to jump day, I'm at home while this is happening waiting for the call to meet them in the ER. All of the sudden I hear the door open and my daughter walks in, in one piece. I ask her how it went and she told me that dad was mad at her. I asked why and she said that she didn't skydive (I knew she didn't, she was still able to ambulate), she went on to say that when she was watching the training video they talked about pain in your neck and shoulders and that skydiving may not be for you. She talked it over with the instructor and he said that it might dislocate both of her shoulders and then he went on and talked about another person who that had happened too. He also said she could come back when her muscles were stronger or she could get her money refunded (Jack got to fly for 2 minutes, little stinker).

Can I tell you how proud of her I was? By not telling her "no" for everything she has learned what she thinks is okay and what isn't. She is teaching herself what makes sense and what doesn't based on her limitations and how willing she is to feel lousy. That's quite impressive for a 13 year old. It's only slightly scary that her 45 year old father isn't that smart.

I'm so glad that I have chosen different for her, my parents did what they told them to do and kept me from doing much, I resented it like crazy. They never gave me a chance to learn what I could do and couldn't do which is why I still believe its okay to para-sail and want to zipline (just kidding, well I have para-sailed). I hope Jill will grow up figuring out what she likes and doesn't like not based on my rules but based on how much she is willing to deal with the consequences of her choices and that really thrills me for her.

Saturday, February 20, 2016

The One Where the Teacher Becomes the Student...

I've mentioned in a few posts if you've been reading along, right around September of  2014 I kind of lost my voice in the patient advocate world. I had a really harrowing experience with a surgery that went right, but treatment after went very wrong. It left me questioning pretty much everything I knew about doctoring and wondering if what I had learned over the years was correct. While recovering from that surgery I kind of faded into the background to lick my wounds a bit.

I'm beginning to feel a lot more like myself lately but it has taken a lot of time and energy and a lot of sitting on the back burner while trying to figure out who exactly I am again. While this has been happening I also fell into a new diagnosis which I was not quite expecting to affect me as much as my daughter, surprise. Again, I found myself down for the last four months while we waited for the big guns at the "University Hospital" to take a look at me. Well, that was disappointing...

In the last 4 months I did something different than the first time I was flattened by the medical community, I started to pay attention to patients. I'm horrible with asking anyone for help but I will stalk or creep your feed until you cry for mercy (ok, a slight exaggeration but not much). The things that I didn't know about I learned from other patients, there was a plethora of information out there for the picking and the amazing thing when I checked to make sure the facts were correct, they were. Imagine the Patient Advocate learning from the patient? Hmm, we normally don't have a whole lot of time for that, usually we're doing our best to listen to what you need or might like to see and getting your voice up to the right people but for us to be able to ask you for help, pretty unusual unless we end up flat on our back with restrictions for 4 months...and this is where I come into this conversation. I have learned more about EDS and POTs from patients than I have ever learned from my Electrophysiologist, Cardiologist or Rheumatologist.

Now we come to the reason that I'm writing this post. I was talking to my friend Molly from And then you're at Jax the other day about my impending appointment for Cubital Tunnel. Turns out she has already been treated for it and told me that by wearing an overnight brace for awhile she was able to hold off surgery but that she had gone through with Carpal Tunnel surgery and that was an easier surgery for her and she recommended it to me. Seems like a throw away conversation, right?

I got to my Orthopedic Surgeon's office and low and behold it wasn't Carpal Tunnel it was Cubital Tunnel. My Surgeon offered me the brace but he was trying quite strongly to talk me out of it and to think of another EMG and surgery. I on the other hand have been through 9 surgeries in 7 years, I'll wear a brace. When they brought it to me my eyes got wide as they strapped me into this brace 3 different ways in a position no arm really actually bends. Normally if I had seen this contraption I would have demanded surgery but because I was ready for it, I was determined. I strapped that puppy on my arm that night and slept with it until 4:30am. It's not fun, but it wasn't difficult to find a way to sleep with it and for the first time in years (yes, I'm a procrastinator) when I took the brace off at 4:30am, my fingers weren't numb. I spent the next 20 minutes rubbing the pads of my fingers against the palm of my hand shocked after one night.

Now, will this brace solve my problem? Maybe, maybe not but at least I can say that I gave the easy way a chance before I jumped into the hard way just to get it over and done. I'm proud of myself because I do way more jumping and dealing with the consequences than trying the easy way first. Sometimes less may just be more.

So, the next time you find yourself having a "throw away" conversation with another patient that has been there, pay attention you maybe receiving the information that gives you the upper hand at your next appointment. Thanks Molly, I really appreciate you taking the time to share this info with me, it's really made a big difference...

Friday, February 12, 2016

The One Where She Gets Real At the Pain Doctor...

I decided that I was finally going to talk to my pain doctor about some questions that had been on my mind for quite some time but I was afraid to ask. I've gone in the last few times with great intentions of asking but chickened out at the last minute. It turned out to be the perfect time because I ended up having a drug test today to make sure that I was taking my meds correctly and nothing else.

We had our lets talk about my health part of the meeting. Yay me, I still have carpal tunnel (I guess I thought if I waited long enough it would magically fix itself, sadly, not so much). It's got to be fixed because it's interfering with my coloring and holding my camera. I'm hoping possibly bracing or OT will help, I'm really not up for another surgery. Even with my meds holding me well I still seem to be having problems. RA is vicious.

So, we finally got to the point where my PA runs out the door to get my scripts ready for me. I took a deep breath and jumped in. I was really kind of surprised at what I heard...

My first sentence of the conversation was "I don't want to seem like a drug addict..." Nice, Melissa...

My question was about the CDC/FDA guidelines and all of the information that I have been reading about on Twitter. I was shocked, he had absolutely no clue. He told me the guidelines would never pass because they didn't have studies and proof to back up what they were proposing (while I would love to believe this, I'm not so sure). He also said that they are in touch with many pain clinics in my area and not one word is coming out of any other pain clinic about the guidelines (I wonder if this is why it seems like so few doctors are standing up and fighting for the patient). He also said should these guidelines be made "law" that a patient like me with a long background of use with no issue of calling for meds early, a positive u/a for other than the drugs they prescribe me and the fact that we have just lowered my meds there shouldn't be any reason for me to stop my meds. He also went on to talk about any reason we might possibly need to wean me off my meds. He did say they would give me notice and slowly wean me off, it wouldn't be something that happened quickly.

My second question was the one I was really concerned about. I asked if they ever prescribed MMJ for any of their patients. I was stumped when he didn't know what MMJ was (he's been living under a rock). I quickly explained and waited for his answer. He said they don't prescribe MMJ (they had done their research which I thought was impressive) simply because they can't control how much you can actually get at the dispensary or know exactly what dose to write for due to lack of studies on MMJ. He did however know what the process was which impressed me. There are specialized doctors in the MMJ field, it's usually a 2 appointment set up at around $150 a piece (insurance doesn't cover these appointments). Then it's $100 for the card and $60 for fingerprinting. I guess what a doctors office like theirs would do is issue the card and then you would have to pay for the fingerprinting. They don't feel as if it's in their best interest at the time. However, he did say that he had no issue with my trying MMJ but I needed to let him know so he could wean me off the opiods first (I think this is state law but it might just be my pain specialist).

If you are keeping track we're at $460 for an MMJ card and we haven't walked into the door of the dispensary yet. I've heard from others who use it that about $60 a month was what it cost them and this was in another state, I have no idea what the prices are here. Since insurance does not cover any of this you can see why more people tend to go the med route. I did ask if this was an option if the CDC guidelines go through and he said definitely.

When we were all through talking he said that he hoped that he had eased my mind a bit and that I was also not the first to ask about MMJ (which made me feel better) and that he was glad I felt like I could talk about it with him. I thanked him very much for the information and help (and was very thankful that I didn't have to deal with judgement either).

All in all a great informative appointment and now I know for the future that I don't need to be frightened about what happens next if the sky does fall. I encourage you if you feel comfortable with your pain specialist to ask too. With all the craziness about pain meds it's very important to know how your doctor plans to handle things if they change quickly and drastically. I think I'll sleep a little more soundly tonight.

Thursday, February 11, 2016

Steel Magnolias Or The One Where She Learns A Huge Lesson At the Movies...

I was flipping through the channels to have some noise in the background while I got things done today and I was happily surprised to see Steel Magnolias come up on my guide. I decided to sit and watch it getting my work done during the commercials.

I think this may be my all time favorite movie. I was 19 when the movie came out in theaters and my mom and I saw it together. The trailers that we had seen made the movie seem funny and more like a comedy than really what the underlying story of the movie was. I saw 4 strong women as the theme of the movie and the two younger women that were taken under their wings from the beginning to the end. My mother and I were in for a shock that we weren't expecting...

At this point in my life I was very angry about having J/RA, I had to leave college due to the fact that my parents pulled me out for a week, I had fallen on campus (there was no talking to them). The drop in my grades I was never quit able to bring back up. I moved home and got a job and I was doing pretty well when 6 months after I left college I woke up one day and my right foot was the size of a football. There went my job and my ability to drive, on top of treatment I was no where near old enough to follow much less did. I had injections, 10 weeks of casts and 100's of NSAID pills. Like the genius child (and I was a child, I had been over protected all of my life) I was, I walked on my cast and didn't take my meds because they hurt my stomach. My surgeon refused to do surgery because he said I would regret starting so early (I wanted to be done, I hated him). Thankfully while I was being a brat he was a wonderful surgeon with a horrible bedside manner (ironically, he was the doctor that diagnosed me 17 years earlier).

So, picture my mom and I sitting in this movie theater getting ready to watch this movie having no idea what we were about to see.

I little primer if you've never seen the movie. Daughter has diabetes and shouldn't have children, gets pregnant anyway, mother upset. Daughter has the baby and then mother donates a kidney, takes care of the baby until he's one and then dies with the baby screaming on his own...

It was the first time I had really grasped that there could be consequences toward my health from my choices, Shelby makes the choice to have a child when its not good for her body she pays the ultimate price. It was also the first time my mom got to really see what it was like for me to be sick at 19 and what what "normal" people had. She used to be angry at me every day when she would come home from work and I'd be such a pain in the butt because I was casted for 10 weeks, then she ended up in a cast and had to bathe and crutch and all the rest and she had a whole new idea of my experience. And now I'll talk about the big elephant in the movie theater...was I ever going to be able to have children and how would it affect my life and theirs.

Needless to say we bawled through almost all of the movie. It was the first time I was actually able to understand what my parents were feeling and I believe the first time my mom had any clue when Shelby says, "you're just angry you can't control my life" how angry I was to be sick as a child.

We had a very long talk at that time which we really needed and the rest of that recovery period was much easier for both of us. They made sure the house was cool for me and didn't give me a hard time about not following the rules...they knew it would have made things even harder for me. I tried to understand every "no" that had brought us to that point (it was hard there was a lot of  "no" in my life).

Fast forward to today, of course I'm bawling through this movie and now I'm on the side of having a daughter with Ehlers Danlos Syndrome. All of the sudden I'm on both sides the side of the mother who wants to smack her for getting pregnant even though she produces a beautiful child and the daughter for throwing caution to the wind and doing it anyway. That part where MaLynn is in the cemetery nearly bought me to my mamas knees but that sure doesn't mean that I tell my daughter no she can't.

This movie was actually a game changer for my mom and me, we went from being enemies to finally seeing each others side and working together to get things accomplished. I started doing what I needed to and understanding if I cooperated we would hopefully get this under control and if they stopped with so much "no" and made things a bit more easy for me we'd all have an easier time.
It's funny that a movie can hit you in a place you never imagined, I can still see the theater and smell the popcorn and I remember both of us trying not to cry and by the end the ugly cry.

I think I'm going to show this movie to my daughter when she gets a little older and hopefully maybe she will understand her old mom a little better it sure makes me understand her a lot more.

Monday, February 8, 2016

"Let It Go..."

A weird thing happened to me the other day. I was ruffling through a bunch of paperwork from a few doctors when I happened to look down and see a paper that had JRA on it. Of course I stopped in my tracks and pulled out the paper. It was from my Rheum's office and there was JRA written under diagnosis on MY paperwork. I guess a lot of people see this on their paperwork and think nothing of it, I'm not one of them.

When I was two I was diagnosed with Juvenile Chronic Arthritis, this was what they called it if you didn't have the marker or look like you had JRA (what does JRA look like, I had swollen knees and swollen fingers), kind of like today's catch all JIA. From that day on I have been fighting for that diagnosis.

When I was a child I was always believed because I saw the same doctors and had my parents behind me to push doctors when they would waffle here and there. Once I became an adult and started dealing with my doctoring myself you would not believe the things I've heard from doctors. My favorite was I never even had arthritis I had Fibromyalgia, the doctor could not understand why I was upset and not thrilled. I went home and cried for days, I didn't contact my PCP for months after that afraid that she would also believe I didn't have RA/PsA or whatever we were calling it that day (thankfully, she was awesome and hugged me while I cried at her office when I told her). Imagine this happening for 20 years until my RF finally flipped positive and my ACPA was also positive and I knew doctoring would have to get easier from here and at my next Rheum appointment I was told I was in remission because I didn't have swelling and my ESR and CRP are normal. This is the reason I ended up with 9 surgeries in 8 years. Even if you can't see it, it's still there doing its job. Before I fall down this rabbit hole too deep let's get to the point of where I'm going.

My new Rheum diagnosed me by looking at me. I would say he's late 60's early 70's. I love old skool Rheum's they speak my language and they know and can see things that newer ones don't because they have a ton of experience. I saw the Rheum for the first time and he said to me I can tell you had JRA as a child, he asked me about disability (first doctor ever, and I'm not on disability) and a few other things I can't bring to mind at the moment. It was the first time I had ever seen anyone say they could see JRA on me (I know what he was looking at because I had stumbled on it when looking for info on my jaw, this is what reading a ton gets you). What doctors say in a visit doesn't always present itself on your paperwork as you may already know. Of course this Rheum is retiring and I get a brand new one in April (yes, I want to cry).

I'm sure you can imagine after fighting for the JRA/RA and sometimes even PsA instead of FMS, seeing JRA as a diagnosis on my records at 45 threw me for a total loop. I've fought 43 years for this diagnosis and now at 45 I have JRA? All of those years doctors didn't believe me, or patted me on the head like I was just a stupid little patient, or straight out called me crazy and told me I couldn't come into their office without my husband by my side and now I have JRA?

It really tilted my world, what if (and you knew I would start with "what if") my doctors had believed me from the start? What if just one or two of them had said, "Melissa, we believe you are sick and don't feel well, we'll get down the the bottom of this." Who might I be now if someone believed in me and I didn't have to fight for 25 years on my own? And before I fell down that rabbit hole I asked a friend and in her wise old age of 20 she schooled me with "let it go" and it hurt, because I knew she was right (and I thank her for having the guts to say that to me because not many would).

I didn't know what to do about the hurt and anger and the chance that I might have turned out different, more positive had my circumstances been different. I sat for a few days and thought about how to let this go. One night I was no closer to an idea when I heard my daughter crying and screaming upstairs, I have never moved that fast in my life. My daughter has Ehlers Danlos Syndrome and with that comes a lot of anxiety. That night she was coughing up blood and because my husband hadn't seeing her do it they were arguing. I had her sit down on the toilet and I sat down on the side of the tub and I listened to her story, I looked at her and told her "I believe you."

I can't comfort the baby, child, young adult, the 32 year old mom or the 45 year old arthritis advocate because my time is past and I need to "let it go" but I sure can make sure my daughter doesn't ever feel like no one believed in her....starting now.

Saturday, February 6, 2016

The One Where She Own's Sad Sally...

Yesterday I put up a meme on my Facebook page. It was not a positive, happy go lucky positive, be happy even if you don't necessarily feel like it. Whenever I put up a post like this I take my heart in my hand and hope my followers will understand where I'm coming from. This is the meme I shared...

What I thought might bring my page down has actually brought the most likes I've ever had on a post. It's also brought messages telling me how dead on this meme is. Some days are wonderful and you think "sick, I'm not sick...look at me getting things done". Then other days you can't get out of bed for 3 days due to all of the "things you got done".

I have taken 3 weeks off of Twitter and IG in order to take care of me. You might say that I've lived what you see above. My health has been very crazy lately. At 45 I was recently diagnosed with JRA after fighting for it all of my life (just a little late, huh?) It was quite a shock...I'll write more about that soon. I'm looking at possibly 2 new diagnosis and I was kind of hoping that I was done at 45, surprise...nope. It's not like I already don't have a handful already. My disease list is starting to look like the alphabet behind my name, yikes. 

I haven't taken a real shower in I don't even remember how long, I never thought I would need a babysitter for a shower and I certainly hoped that my heart rate would never get to 170 or higher from getting clean. I used to joke about extreme showering, now it doesn't seem to be quite as funny. Because life isn't difficult enough...oh yes, there's more (hard to believe, huh?) I've had a rash for about a week and a half. Now it's only on my hands but it's pretty nasty. Which may be a whole different diagnosis (I'm collecting letters quicker than I can keep up). I was off Actemra for 3 weeks due to pre-auth for my insurance another thing I'll blog about soon.

I've been completely overwhelmed, scared about what is coming and shocked that a rheum could tell I had JRA just by looking at me (oh yes, of course he's retiring...). I never saw myself going to the big teaching hospitals (that was for sick people) and I certainly didn't see 3 new illnesses I'd have to learn how to handle. 

And then I broke, I knew that I couldn't handle anyone else's problems except my own and I left and I think a lot of people were shocked when I really left, I've threatened so many times before and I've never done it. 

Yes, I've seriously thought about quitting because I'm not Positive Polly but Sad Sally. Then a weird thing happened, I woke up feeling pretty good this morning (the rash, ouch) I was able to get out of the house, buy some cupcakes, take a few pictures, set up my new humidifier. Nothing big for anyone else but huge for someone who has been "relaxing" for the last 4 months. Even better, I woke to a beautiful email from a friend who explained me in a way I don't look at myself and then I saw this meme taking off on my FB page and another message telling me that "I was helping people". I stopped into Twitter and it was so nice to catch up with friends (okay, but 3 weeks is really like forever on Twitter).

I guess what I'm saying is I'm picking myself up and starting new, much better for the time I've spent away and also understanding who I can go to for support (it's hard being a leader, yo) I've spent a lot of time coloring, watching Golden Girls (wow, I miss my grandparents), listening to music which for some reason touches me more than anything and just trying to figure it all out.

This meme above helps me know that it's okay to be Sad Sally as long as I don't get stuck there. I think it's fair to say everyone's positive is different just like everyone's diseases, how they deal with them and how they chose to cope. I plan to write about this too (okay, that's 3 posts I've promised).

Thank you for your acceptance even though I am far from perfect and I'm just shuffling through this life with all my letters just like you are. If you can handle Sad Sally sometimes, I'm your girl. If not, there are so many others that can help you. Thank you to those who showed me today that I do matter and the way that I deal is ok. It was kind of a huge lesson. Thank you!

P.S I've had writers block for so long, this is a huge accomplishment in itself...

Monday, December 14, 2015

Cooling Things Off a Bit or Why I Love My New FlexiKold Ice Pack

I'm slightly new to Twitter (@realitiesofRA), within the last 6 months or so. I have braved the Twitter Universe and I've really started to enjoy it. When I first started there I was approached by @NatraCare to review their #FlexiKold ice packs. I've never really sat down and written a review and I'm a complete snob about my ice packs so I declined. I really was not looking to figure out how to write a bad review as my first review post.

Thankfully, I was asked again to try and review a FlexiKold ice pack and I'm glad I did. I really am an ice pack snob. I have two brands that I buy and there are a few things an ice pack must have for me to use them. They need to stay cold a LONG time, they also have to be flexible and they can't break open. Seems like a no brainer, huh? I use two different brands, one made of clay. I really like these packs because they are extremely flexible, the only problem is they get warm fast. On the days that I need to use ice packs all day I usually can go through 12 of them a day while I'm waiting for the first one to get cold again. 12 ice packs is a pretty decent investment for ice. The other brand I use freezes like an ice cube, which is great because it lasts for 8 hours.The problem? Have you ever laid your face on an ice cube? It's not fun for my TMJ at all. It's also not great when you want to wrap an ice pack around your ankle, either one side or the other is cold but not both (even with elastic to pull it tight). So while these are my favorite ice packs, I'm still not really meeting my needs.

I decided to take the NatraCare Representative up on their offer this time and have them send out a FlexiKold ice pack for me to try. When I grabbed it out of the mail I had totally forgotten it was coming with all the Christmas packages coming so I was surprised when I opened it. I was also having a bad day physically so it was nice to have something in the mail for me. I pulled it out of the box and thought looks pretty normal to me, and wondered what the big deal was. I threw it in the freezer and didn't give it another thought until later that evening (maybe 4 hours) when I was really hurting.

My first thought was after 4 hours this thing was cold (I know ice packs are cold but I've never thought when pulling an ice pack out "wow, that's cold" especially after 4 hours in the freezer). I used it on my foot that night and I was really surprised how many of my needs it met, It stayed cold for a few hours, it was completely flexible and I could smoosh (yes, technical word) it around my ankle and make sure that every part of my swollen ankle was getting cold, it's made of sturdy canvas like fabric and I doubt there will be an issues with cracking or the fabric breaking. After I used it around my ankle and on the bottom of my foot (at least 3 hours ) I threw it back in the freezer and then about a half an hour later my jaw was really starting to hurt so I moved it aside to grab a different ice pack and was shocked to find that it was cold enough to use again already (I think this is because it's thin enough to re-freeze quickly, it's also has gel inside instead of clay or frozen water). I have to say I thought that was pretty impressive. Even my husband has good things to say about the FlexiKold. He had surgery 2 weeks ago on his foot. Usually with foot surgery you ice behind the knee to get the cold to flow through with the blood (weird right, it works). He was able to ice longer because the FlexiKold stayed cold longer and when you have to get up every time to put your ice pack back with a foot you can't walk on being able to ice 20 mins and then put it back on 20 mins after and have it still be cold is quite handy. I wish I had taken them up on their offer sooner. If you would like to purchase a FlexiKold ice pack you can do so here and if you would like to purchase a set of Mittens (in case you don't win) you can get those here While you're at the NatraCure website be sure to check out their other products too.

Not only did NatraCure send the FlexiKold for free so I could review it they also offered a free pair of their Hot/Cold mittens. I am passing this on to you, consider it an early Holiday present from me to you if you play along. I will pick a winner on Monday, December 21st. What do you need to do? Comment below if you use ice or heat and on what joints. If you comment anonymously, please be sure to leave an email address where I can reach you. No point in winning if I can't get to you, I hope you enjoy them as much as I'm enjoying my ice pack.

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising

Monday, November 2, 2015

You Know That Can Kill You, Right?!?

Those words rang again in my head tonight, "you know that can kill you, right?" and I couldn't help but realize how much my life has stayed the same since I heard them. In December 2011, I was diagnosed with Secondary Adrenal Insufficiency after 4 cortisone injections within 8 weeks. It pretty much worked out to an injection every two weeks. I knew that steroids had a lot of scary side effects, unfortunately, even the fliers that go along with prescriptions don't share the information about adrenal issues and steroids. I learned the hard way with a 5 day hospital stay where I came very close to dying. If you want to read more about it, I wrote a post here explaining my experiences.

You would think that I wouldn't be able to take steroids anymore but it's just the opposite. Since my adrenals don't work as they should I take a drug called hydrocortisone every day, it keeps me alive. Without it I would go into Adrenal Crisis, shock, coma and die. Your body can't function without cortisol. You would also think that I would never have another cortisone injection again. Wrong there, too. I have RA and if we want to keep me out of the OR, injections are pretty much my only other option (thankfully, Actemra has my RA controlled, not remission but much better). Since I've been diagnosed with Secondary Adrenal Insufficiency I've had 4 surgeries seeing as I can only have 1 or 2 injections a year.

So. I must be militant about telling people that they should never use steroids, right? Nope, I warn people of the possible side effects. what happened to me and tell people it can happen to them if they don't wean appropriately or have too many injections in a short amount of time. (Doctors are starting to become aware of how much damage repeated injections in the same joints can cause and also that the body can't handle steroid injections 2 weeks apart like I used to have in my back without their adrenals shutting down for good. The Doctor that gave me the injection that brought on my SAI has changed his practice and gives no more than 3 injections in a calendar year.)

Imagine my surprise this evening as I was talking to another patient about the risks of steroids, Adrenal Insufficiency and POTs and in my head I could hear my Doctors voice in my head saying, "You do know this can kill you, right?" My doctor believed that I was very loosey goosey with the way I continued to make my choices for my health. I had cut down from 10 injections a year to 2. Both of those injections I went to him for so he would know that I wasn't going elsewhere. I now realize that this wasn't about me, it was that he had lost his nerve and he was projecting his worries and concerns on me, I didn't realize this then.

As I talked tonight and warned a friend that steroids can kill I thought to myself, sometimes no matter how much Doctors think they know their patients they can be completely clueless. I was well aware of how dangerous steroids can be and I probably will be for the rest of my life. I'm one of the biggest proponents when it comes to steroids and the sides they can bring. Almost all of you know or have heard me be a pain about what a love/hate relationship I have with steroids.

Yes, I'm well aware of "you know that can kill you, right?" I laid in a hospital bed reading about what SAI was and becoming more scared, I passed out on my bathroom floor and ended up back in the ER for a stress dose 2 days after being discharged. I'm the one that went into crisis after my surgery wondering if I would die since I made it to shock stage before I got my...wait for it, steroids.

The difference between him and me? I decided to fight, you can't live scared when you're sick, you can't lose your nerve or every decision you need to make will become the biggest one ever. That line circled through my head and I thought here I am educating another patient in what can happen so it doesn't happen to them, just like I did in 2011 and I will keep doing until I die. I win, because I know I'm the person I believe I am, not the one he thought I was and just knowing that is worth everything to me. I hope SAI doesn't kill me, but if it does at least I know that I did my best to educate others, I didn't give up, I didn't lose my nerve, I picked up and fought and it's 4 years later and I'm still fighting and still alive.

Wednesday, October 7, 2015

So I Did A Thing...

Britt at @HurtBlogger came up with a really good idea at the beginning of the year. She was looking for a good way to get the word out about the realities of people living with RA. What started out as the hashtag #ChronicLife soon encompassed not only people with RA but more patient communities than probably anyone thought would play along. At the end of her 48 hour live tweet the hashtag was trending and a lot of patients were tweeting about what it was like to live as a chronic patient.

I'm guessing you're wondering why I'm sharing this with you, here's why...last week on Thursday and Friday I did my own #ChronicLife live tweet for 48 hours (Britt encourages this and if you give her a heads up she will pop in and tweet every once in awhile too).

When I started tweeting I had just broken another tooth thanks to dry mouth and Sjogren's so I knew I was already starting off with a bang. I tweeted through out the day along with @mommahsmusings (Mommah and I were doing this one together, it was her idea to do this during Invisible Illness Week to raise awareness for both). When I hit the 24 hour mark I felt pretty much as if I had whined the whole day. Some tweets were a big deal but others not so much, still I thought how many people want to read about my health all day?

So the next day I got up and decided that I needed to be more positive in what I was tweeting. I often think this is why so many people don't know the truth about Chronic Illness and Pain, we're too busy trying to cover things up to make it palatable for "normals" because if we don't want to listen to it can you imagine how a "normal" feels about it? Still that isn't right, so I continued to tweet.

By the middle of the day on Friday I had a sneaking suspicion that the person that I hadn't been honest about my health with was me and it wasn't a pleasant surprise. I had participated in the first #ChronicLife tweet but a lot of that was replying to other tweets and encouraging them as much as I could (a whole different ballgame). Now this tweet that I was doing was all about me.

When the clock hit midnight I felt thankful to be done and that I had hung in there to finish (posting was less frequent in the later hours of the day). I felt I had accomplished my goal and planned on Storifying my #ChronicLife the next day.

I was very surprised to wake up the next day in a serious funk. How could I have this much going on and be walking around telling everyone that my meds had me pretty well under control when my EDS, TMJ, Sjogren's and Raynaud's were all acting up?

When I started to pull tweets for Storifying I got an idea that maybe I wasn't quite as well controlled as I like to think I am. It was a rude awakening and I wasn't quite ready to deal with anything less than good news, after all I'm also recovering from my 3rd foot fusion surgery (pray for bone). Add on the fact that I have fallen 3 times this week and yeah, problems...I got 'em. I'm starting to break down issues and when and how they will be handled and if I can double dip with a few.

So while I thought it would be good to raise awareness in the community, I really had no idea that I would also raise a little self awareness too. I guess I need to find a way to be more aware of what's happening with my body without becoming a hypochondriac too. I've decided I'm going to back to journaling again. I tried this over the summer and I was really surprised to see tracking my pain and sore joints gave me a really good idea what to address with my Rheum. I also use Arthritis Power to track my pain and other issues but I never make the time to get in there every week and update, this needs to become a priority. If you haven't heard of it and want to give it a try, Go check out CreakyJoints they will point you in the right direction to sign up.

I'm glad that I have ways to keep myself aware of what is happening with my body. It seems that I have distanced myself from my body for a bit too long. It will be good to get back in touch and keep updated in a healthy way (one that hopefully won't turn me into a hypochondriac at some point).

Do you track your symptoms and pain? If so, how and where do you do that?

Oh, and if you want to check out my Storify for my #ChronicLife Live tweet, here's where you can. Happy Reading. One last thing, if you want to follow me on Twitter here's where you can.

Wednesday, September 30, 2015

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Rheumatoid Arthritis, Ehlers Danlos Syndrome, Sjogren's Syndrome, Adrenal Insufficiency, Gerd/Hiatal Hernia, IBS, Hypothyroidism, Raynaud's Syndrome, TMJ
2. I was diagnosed with it in the year: RA, 1972, EDS , 2014, Sjogren's 2002, Adrenal Insufficiency 2011, Gerd/Hiatal Hernia 2012, IBS 2014, Hypothyroidism 2001, Raynaud's Syndrome 2014, TMJ 1986
3. But I had symptoms since: In this case, I've had symptoms forever. They just change as the time goes on.
4. The biggest adjustment I’ve had to make is: adjusting over and over. Each new diagnosis brings new changes and adjustments. I've changed what I eat, moved my room to the first floor, I need to dress warmer (even in the summer), I take steroids and I have to makes sure I remain hydrated at all times, I wear more braces and I use more aids than I have ever used (wheelchair, knee walker, boot/cast, TENS, crutches).
5. Most people assume: that because I'm out of bed and smiling I must be ok, even if I am dragging a cast behind me and using a knee walker.
6. The hardest part about mornings are: for me, waking up. I'm dealing with hypersomnia right now and I seem to be sleeping my day away.
7. My favorite medical TV show is: I watch very little tv but I would have to say Dr. House. Is there a real Dr. House in the audience? I need a good doctor to fix what's broken, if only!
8. A gadget I couldn’t live without is: right now, my knee walker (recovering from foot surgery) when I'm done with that I would say my favorite gadgets are ice packs and my heating pad. They help when I need the pain to go away NOW!
9. The hardest part about nights are: being alone when you can't sleep. Sometimes it feels like you are the only one awake in the world.
10. Each day I take __ pills & vitamins. (No comments, please) I knew I wasn't going to want to know this, 30 pills a day and two injections a week.
11. Regarding alternative treatments I: have tried a lot of different things. I feel that conventional treatments are the way to go but I also think that vitamins, massage, meditation, acupuncture also has a place in the care of those with chronic pain.
12. If I had to choose between an invisible illness or visible I would choose: this year my disease has been more noticeable and yet the things that hurt the most are not noticeable. I'm kind of working things from both sides and I don't think either is better. At least I don't get dirty looks when we park in a handicap spot.
13. Regarding working and career: that stopped for me in '97. I advocate for awareness of my health issues and work with patients quite a bit. Still keeps my hand in but doesn't pay at all.
14. People would be surprised to know: you can have so many things wrong with you and still be a functional being. I owe a lot of that to a good pain management plan with my pain doctor. I'm hoping that situation doesn't change soon...
15. The hardest thing to accept about my new reality has been: adapting to my new reality. I hate to see my family go somewhere and get left behind, I'd love to take that trip to Disney too.
16. Something I never thought I could do with my illness that I did was: I'm still finding these things. My day to day reality continues to change quickly so sometimes when I'm able to walk I find new things. While I'm off my feet right now, I'm pretty much doing as little as I can.
17. The commercials about my illness: aren't even close. I know there are so many out there that can take an infusion or injection and be out there building a huge swingset or building a dollhouse or all the other things they show. For me the commercials that show a woman taking a walk are the ones that I identify with. My meds right now are working well but I'm not quite sure commercial well.
18. Something I really miss doing since I was diagnosed is: EXERCISE. My adrenal insufficiency has brought exercise intolerance with it and there for I can exercise about 15 minutes tops without feeling like I will pass out. Needless to say, I don't exercise much anymore...
19. It was really hard to have to give up: chewing. Sounds weird but with TMJ I spend more time not chewing than chewing lately. I'm sure you can imagine not being able to chew your food every day, you can't? Give it a try for 24 hours, it makes eating almost like sport...
20. A new hobby I have taken up since my diagnosis is: art. Coloring, drawing, learning to draw has interested me for quite some time. I've now found something easy enough for me to give it a try. It also helps immensely with my stress level and helps to relax me too.
21. If I could have one day of feeling normal again I would: Eat everything, Zipline, have sex, go for a walk and exercise. Sounds like a long day, wouldn't it just be nice to be tired from overplaying? 
22. My illness has taught me: that we can all have the same illness and yet all have different symptoms of said illness. There are as many different ways to treat each one of us and that no one copes the same way, and that's ok. Everyone is different, I'm not sure why that's hard to understand within the community.
23. Want to know a secret? One thing people say that gets under my skin is: you should feel lucky that you aren't worse off and you aren't positive enough. The first one completely negates what I have going on and why would you want to say that to someone (this was said to me by another patient). The second one you aren't positive enough (also said by a patient) I feel tells me that I'm not coping right. Maybe that doesn't work for others but I know what works for ME, please don't assume what works for you, works for everyone. I'm of the thought process if I don't feel my emotions and stuff them eventually I will just get to deal with them later. I'd rather deal now, figure it out and move on and let it go. That works for me, I don't assume to tell other people how they should deal and yet I'm constantly defending my way for me. Why is that?
24. But I love it when people: offer to help. We have very little help right now and have two people in my home that are supposed to be off their feet. When someone offers it is well received because we really need it.
25. My favorite motto, scripture, quote that gets me through tough times is: so simple "I can do this!" Probably not as fluffy as some other answers but it helps me know "ok, this is hard" and I validate that but hard or not it has to be done so lets do this thing.
26. When someone is diagnosed I’d like to tell them: find a support group. Online, face to face. This will be your lifeline, they will give you support, answer your questions and if you are lucky you will find a mentor that can help you through the first couple of months until things settle down and get a little easier to handle.
27. Something that has surprised me about living with an illness is: the reactions from friends and family. They will help for a short time and then assume you are good. They don't understand chronic illness lasts forever. I have lost most of my friends, because honestly who wants to talk about illness 24/7?
28. The nicest thing someone did for me when I wasn’t feeling well was: brought me a meal, sent me happy mail, took me out for coffee when I couldn't drive.
29. I’m involved with Invisible Illness Week because: I think it's important for people to know just because you can't see I have hardware all over inside my body doesn't mean I'm well. When people can see what's going on they get it, because they can't its much easier to act like it isn't happening.
30. The fact that you read this list makes me feel: like you care. You're interested, invested and engaged. Thank you!

Sunday, September 6, 2015

Tales of the Funny Side of Recovering From Foot Fusion Surgery..

Grab Bar...
A couple of weeks ago before my surgery I asked my hubs to get a grab bar so I could have something to grab onto after I was done using the facilities.
We talked about a screw on the wall one but I wanted a suction one that would leave the wall without holes. I wasn't thrilled with the idea of a grab bar being in my guest bathroom.
So, out he went to buy said grab bar. He came home and installed it a few days later. He was all proud and came into my room saying "Melissa, I put up the grab bar..." 3 seconds later, thunk, I heard it hit the floor. Um, not feeling so sure I want to grab that.
Back into the bathroom he goes, puts it up and he comes back, before he hits the bathroom door, I hear now I'm laughing hysterically knowing even if that thing sticks to the wall I'm never using it.
All I can picture is me timbering with the grab bar in my hand! Not exactly what I had in mind.
So, we looked into different grab bars. Picked a small one that included a toilet paper holder. Very classy you would never know it's also a grab bar. He installs it, it looks good, I'm impressed.
Then he tells me, "Melissa, it's not in a stud so don't lean on it too hard." Um, what?!?
Why yes, we are grab bar challenged in this house. Thank goodness for the sink...

Dry Shampoo...
The day after my surgery I got up and got all cleaned up. No shower for 5 days since I had a soft cast on.
It was ok because I had planned ahead, I bought all the washing clothes they had at Walgreen's and I even picked up a bottle of dry shampoo (baby powder works equally as well and is much cheaper, btw). So I'm cleaning myself up, spray my hair with the bottle and go on my merry way.
All week long my hair has been so weird, even after washing it's had the oddest consistency. Finally when I was moving bottles yesterday I think I figured out what happened. Instead of using the bottle of dry shampoo, I used my spray deodorant on my hair...both made by the same company.
Do you have any idea how hard that stuff is to get out of your hair? When they say keeps you dry they mean it...

My Incision...
Why I nearly passed out when my bandages came off and I saw what was under my soft cast. Holy cow. I'm thinking this will make for an awesome tattoo of a zipper up the back of my leg...

Stay tuned for more Tales of the Funny Side of Recovering From Foot Fusion Surgery...(wow, that's a really long title, sheesh!)