Rough Weekend...

Well it's Sunday afternoon and it has been one hell of a weekend for me. :(   Friday afternoon I went for my 2 week follow up on my knee surgery. Dr.B said my knee looks great and its moving great.  We discussed the RSD and my referral to the pain doc. He did tell me not to expect to come off my crutches anytime soon. Friday was a very busy day for me with errands and what not.

I haven't had any of the swelling associated with RSD until now, Friday night after a trip to Walmart I noticed my sock was tight and I was having a hard time bending my toes. Sure enough, my foot and toes were swollen. UGH!! is all I can say about that.

This is a picture of my foot when I noticed the swelling, later on that night it got worse. The night didnt get any better. With all the swelling, I was also having alot of pain too. I had the worse time sleeping Friday night. Think I may have slept about 3 hours total. I felt HORRIBLE!

Saturday wasnt much better either. I was in pain all day, slept a little better sautrday night.

Here is what some of the symptoms of RSD are.

Today has been horrible too, I was in the bath this morning and while reaching to place my phone on the toilet, I somehow managed to drop my RSD foot into the water. OMG! It hurt so bad that I ended up getting nauseated. I thoought that the nausea would pass after I laid down. Oh boy was I wrong. Lets just say my breakfast didnt stay down too long. Tomorrow is Monday and it will be my first day back to work. Oh lets see how this goes. I am praying that I get some sleep tonight and that I can keep the pain down as much as possible tomorrow while at work. Wish me luck on this.

 

As always,

 

Hugs  Kim

Losing my mind....

Well its been a rough couple of days for me. Wednesday I had physical therapy and they started the de-sensitization therapy and let me just tell you that it is as unpleasant as the therapist said it would be..They started by using the petroleum balm and rubbing it on the calf and foot. All I can say about that is that I wanted to vomit right there on her table. I made it through like a trooper though. My wonderful hubby took me to a nice lunch afterwards :) Always a plus..Well it was a very busy and eventful day and wore me out. My leg was so purple and sensitive and hurt so bad. That night I laid on the couch and watched Chicago Fire and played PS3 with the hubby. Even though it was a very rough day, it ended very nice :) :)

Thursday was no exception, it was a HORRIBLE day for me. I woke up and got my daughter off to school and got myself ready to go get myself pampered at the hair salon :) Every girl needs to feel pretty once in awhile and with this horrible monster, its not often enough. I decided to stop at the store to get a Dr Pepper. So I park, get out of the car and get my crutches, then hop on it to the store. Unfortunately I love getting fountain drinks but cant because I have no way to carry it to my car. So I settle for a bottle of Dr.Pepper, I pay for it and as I am crutching to the door, the cashier is nice enough to come and hold the door for me :) Wish there were more people like that. But her kindness really hit a nerve with me. As I got into my car, I broke down and cried. At that point, I finally had my breaking moment. It was then that I realized that even the smallest task, takes so much energy and makes me exhausted. It was then that I realized how much I hated life right then, in that moment in time. I hated that I cant make dinner without having the help of my 4 year old or my husband, that just about the only cleaning I can do is washing my dishes!! Im a very anal person when it comes to my house and how clean it is! Im picky on the way I like it cleaned and here I am, now unable to do it! I cried some more.. I cant wash laundry because I am unable to get down into my garage, in my room I cant get dressed because I cant get on my bed alone because it sets too high and I have no where to sit down to get ready, so I have to get my clothes and pray that I dont fall trying to get them and not having my cell phone to call for help! Its so frustrating because you feel like a helpless 5 year old. Having to get dressed in my bathroom, and not being able to get my dirty clothes into the bedroom to the dirty clothes hamper.
A plus to the day, was my little sister and her boyfriend coming over and bringing my absolutely adorable nephew over to see me and have dinner. Its moments like this that make me feel much better. :)

This monster that I am battling with is absolutely horrible! Being in pain all the time, is the worst thing ever! I am so lucky to have the support that I do, but I can say the one thing thats missing is my mom. As I said in my previous blog, your never too old to need your mom.

The purpose of this blog is to let people know first hand how this horrible thing affects a person, not only physically, but mentally as well. My hubby never really knows how much pain Im in because I know I need to be strong and try to do as much as I can so that my daughter knows that Im still alive. I dont want this monster to overcome me, but somedays its really hard to be strong. I just do what I have to do.

Today I go back to the ortho for my follow up from surgery, so Im interested to see what he has to say about all of this. I definately wish that I had never had this 2nd surgery.

(((Gentle Hugs)))
Kim

A day in the life of RSD

Well where to begin today, last night was rough for me. I cried some, just thinking about how this horrible monster has affected my life in so many ways. I mean at 29 you never think you will have to experience something like this. I am so thankful that I have so much support and love around me. My mom passed away almost 3 years ago, I have cried more during these last few days since being diagnosed, than I have in a long while. I dont care how old you are, your never too old to need your mom. Last night my meds made me sick, so I spent some time in the bathroom before I was finally able to get some sleep.

This morning I was actually able to wake up to my alarms instead of sleeping right through them. I got my daughter ready for school and then laid back down until I had to start getting ready for physical therapy this afternoon. This will be the first time I have driven myself to therapy so I was unable to take any pain meds before going. EEECK definately not looking forward to that, not to mention I had to put a shoe on my foot. OUCH OUCH OUCH...  So I get to therapy, but keep in mind this is my first visit since being diagnosed so my therapist isnt aware of what I have been dealing with the last few days. So I get back there and I ask my therapist if he remembers what I was telling him last thursday about how my leg and foot were and feeling and he says yes he does. I tell him that I went to the dr about it on friday and they have said rsd has officially set it. He then tells me he thought so, just from what I was telling him and how my leg looked. So he was already thinking RSD before the dr officially said it. Hmm guess I was outta the loop on this one lol

So he starts me out on the bike...again OUCH I still cant go completely around, but hey we will get there. He then brings me back to the table, where one of his Residents comes over and he starts explaining to him about rsd and what it does to a person and he asks me to show him the picture of my leg so he could see what it does, then he tells him not to touch certain areas of my leg. We continue therapy and at the end my therapist comes back over and says that if I want he can do some therapy for the RSD but it is very unpleasant. We agree that he will start that next week so that hopefully sometime in the future I am able to come off the crutches and walk again :) YAY!!

When I get home I finally get a call from my ortho doctor giving me the information for the pain management dr that treats rsd and said I can call and schedule an appointment. Once again :) YAY!!
So I make the phone call and I now have an appoinment to see her on the 18th of this month. I am hoping to get on the right combination of medications to hopefully give me some sort of relief. Oh and speaking of medications, today my dose of Lyrica went up to 100mg. Lets see how this treats me :) 

((Hugs))  Kim

The Beginning of my RSD

Well, today is Monday February 4th, 2013 and I am starting this blog to document my journey and prgress with RSD. For those that dont know what RSD is, please go check out www.rsdhope.org  and for anyone that is familiar with this monster, you know that it can tear your life apart. I am going to start with how this horrible disease happened to me.

In May of 2012, I had surgery on my left knee to remove plica around the knee cap. I went through physical therapy for several months. I dealt with constant pain, even after stopping therapy. I was on pain medications, steroid injections for months after my surgery. Nothing seemed to help. I saw the PA at my ortho's office almost on a monthly basis trying to figure out what was going on. She was convinced that I had RSD, but my orthopaedic surgeon wasnt convinced, due to the only symptom that I had was constant pain,no physical symptoms. I had a bone scan on my knee and leg, and it showed numerous amounts of uptake and my leg was lit up on it. The Dr said he had no doubt that I was telling the truth about the pain I was in, but he still didnt believe it was RSD. He then decided to send me for an MRI on it. The MRI showed alot of scar tissue build up in the knee and he said it was pulling my knee cap out of place. The only fix was a simple surgery to remove all of the scar tissue and I wouldnt be in pain anymore. So we scheduled surgery for January  24th, 2013.

On January 24th, I went in for surgery. Surgery took a little longer than expected due to there was more scar tissue than he thought originally. When I woke up from anesthesia, I was screaming because I was in the most excruciating pain that I have ever experienced. Simple little surgery right? Didnt feel so simple at that moment. They were giving me dilaudid and that wasnt helping, so the recovery nurse called anesthesia and they came down and gave me a nerve block. After the nerve block, I was feeling no pain. Couldnt get the nausea under control though. Several hours later, they finally let me go home. Thank goodness :) While having the nerve block I wasnt any pain, but on Friday it started wearing off and the first place I got feeling was in my toes and foot. Finally it wore off completely and I was back to being in alot of pain. I was taking two pain pills every 4 hours and it wasnt even touching it.

On Sunday morning I woke up and my toes and foot were numb and felt tickly and pringly. The only way for me to describe it, is it feels like a 1000 little needles sticking my in the foot. Deep down I knew that something wasnt right with my foot. Monday morning I went to my post op appointment with the PA and I told her what I was feeling in my foot and she said it could be that Im feeling some effects of the nerver block. When she removed all of my bandages, I noticed that I had the same feeling in my calf as well. I took her word for it and left. I continued to have the same feeling throughout the week. On Thursday, I had my first physical therapy appointment. I have only been able to tolerate wearing a fuzzy sock on that foot, but had to deal with it and wear a shoe and sock for therapy. It was painful and uncomfortable, but I made it. :) I explained to the therapist what I was experiencing and she agreed it wasnt normal and suggested I call the dr. Later that evening, I was propped up and my husband placed his hand on my calf and it felt as if I had been sitting in a tub of ice. The calf and foot were ice cold, and purple with little white splotches all over it. My husband freaked out and told me that I definately need to call the dr first thing in the morning.

It is now Friday morning and I have put a call into the doctors office. The nurse and PA are in agreement that it isnt normal and I need to come in immediately. So, for me this will be the first time to drive since surgery, so I wasnt able to take any pain meds :(
I get to the office and the nurse checks my foot and calf and is in agreement that it feels like ice. So the PA comes into the room and I explain to her what I have been experiencing. The first thing she checks are my circulation and pulse in the foot, those are great she says. She starts looking at my leg and foot and thats when she looks at me and says " You know I have thought all along you have had RSD, and now I am 100% sure it has now set in" My heart just sank. I could not believe what she was saying. I think I was in shock, I didnt believe it was real. She told me to hold on for a minute and she left the room. When she returned, she said that the Dr wanted to start me back on the Lyrica since that is one of the main medications for it. I agreed, but not thrilled at the idea. I was on it back in November and it made me feel like a zombie, I was sluggish and felt like I was moving in slow motion. I was forgetful and tired all the time. So I am currently taking the Lyrica 50mg and tomorrow I increase that dose to 100mg and they increased my pain medication to higher dose, which I am still taking 2 every 4 hours. They are working on finding me a pain management doctor that specializes in treating RSD.

So this is where I am at currently, just learning how to cope and deal with it. If I have my leg propped up on my wedge pillow, the color stays somewhat normal unless it starts getting really cold. I tried to shave my calf last night and managed it but just barely. I could hardly stand the sensation of it touching my leg. I am currently on crutches from my surgery, but there is concern on if I will be able to walk again. I cant put any sort of pressure  on my foot at all. Last night for the first time ever, I felt the burning in my foot. It was under two of my toes and it was horrible. 

Tonight I took a bath like I do every night and when I placed my foot in the water, it felt like it was on fire! It was the worst feeling I have had so far. This whole ordeal is scary, but talking about it definately helps. I will be documenting my journey from day to day. I will be posting pictures as well. If anyone has questions, please feel free to ask. I will be more than happy to answer what I can.

In the top picture, this was taken to show the color change that has already taken place. This picture was taken after I went from the couch to the kitchen and had only been up about 5 mins or so. In the bottom picture, I had just finished taking a bath last night and it was all spotchy. Just a little idea of how RSD affects a person. I will post more pics throughout this blog.

((Hugs))  Kim