this-is-me-and-this-is-my-life-2

As I start to get more actively involved in the online arthritis community I’ve noticed a theme. Many so called “healthy” people cannot comprehend what it is like to be a kid, teen, 20, or 30 year old with arthritis. They don’t know that kids as young as 6 months can and do get arthritis. Let’s face it; our society still considers arthritis to be an “old person problem.” These “healthy” people don’t realize that to many young people are taking lose dose chemo/poison in order to keep their Rheumatoid (RA) or Juvenile Rheumatoid Arthritis (JRA) in check for example. There is simply no realization that this disease can strike anyone, regardless of age.

Now, my own personal battle with Arthritis (aka Arthur) is pretty mild when compared to other patients. I don’t take low dose chemo, was able to learn to walk without swollen joints, got to finish 2 separate degrees in college without pain forcing me out of school, and only rarely need a cane to walk. My medication and supplement bill each month is more than a lot of people make in a year but it still doesn’t rival someone who needs injections each month. Most of my arthritic expense comes from the 7 surgeries (with more on the way) I’ve had since 2003. This might sound like a lot until you realize a Rheumatoid Arthritis patient can have 15-20 surgeries of which more than half are complete joint replacement operations by the time they are 21.

Although there is no legitimate way to compare pain levels of an RA patient to me for example, I do believe my type of arthritis is fairly mild. Since my case is easier to treat than others, I feel a moral responsibility to help raise public awareness to this horrific disease. My hope is that by raising the profile of arthritis we can get the public to better understand what we go through as patients. With that in mind, I thought I would share this journal of a random day in my life. This day wasn’t picked because it was a particularly good or bad day, it was picked just because it was a day in my life as a mild arthritic/chronic pain patient.

My Life

10:07pm – I shut off the TV so I can go lie down in my bed and read. First though, I need to take my 1 and a half Lexapro and 2 fiber supplement pills. The Lexapro is supposed to make me drowsy so it’s easier to sleep. The extra fiber is to help the tummy since I take so many pills.

11:26pm – I decide I can’t read anymore so I shut off my Ipad and try to sleep. My eyes are heavy but my lower back is hurting just enough to prevent sleep. With some luck, I’m hoping to finally fall asleep within the next hour or so.

3:32 am – I’m wide-awake despite my alarm being set for 4:30am. I decide to check twitter and my e-mail for something to do. I end up dosing off around 3:45am.

4:30am – Alarm goes off. I’m mostly asleep at this point so I slam my hand down hard on the snooze button out of anger. My lower back is very tight and both knees feel stiff. It is 4:42 before I finally get out of bed. I make it down my stairs to my kitchen but I had to stop once because of knee pain.

5:03am – I sit down to eat my breakfast which consists of 2 turkey sausage patties, a bowl of fresh fruit, a yogurt containing no aspartame, and a glass of reduced sugar O.J. (a glass of O.J. is a must for me). With breakfast I take 3 Ignite Naturals Digestive Enzymes, 4 Ignite Naturals Joint & Mobility Supplements, 1 Nabumetone (anti-inflammatory), 1 Gabepentine (back pain), 2 Vitamin D3 supplements, and 1 Omega-3 supplement. I’ve decided my pain isn’t that bad today so I’m going to skip the 2 Tramadol (pain pills).

5:18am – I’m back upstairs to make my bed and take a shower. I have to stretch for a few minutes before I take a shower because my lower back did not like making the bed this morning. This occurs fairly regularly, especially these last 2 years.

Since it’s hard to stand still in order to dry off after the shower, I put a towel down on my bed so I can sit on it instead of standing. I learned this handy trick after I had 10 screws and a plate put into my left wrist.

5:59am – I’m out of the shower and dry. I’ve decided that the knees are bad enough that I should tape them up before work (highly recommend KT Tape for this!).

6:19am – I’m dressed, packed for the gym, and heading out the door for work. I have my lunch, am snack, water bottle, gym cloths, and pain pills that I’m taking with me today. My hope is to make it to the gym right after work since if I come home first I won’t go back downtown to the gym.

6:31am – Arrive at Starbucks for me sugar-free caramel iced latte. A must for any chronic pain patient and government accountant like me.

6:55am – Arrive at work. I only have mild road rage today at idiot drivers on the connector. Since I’m bound and determined to stay active I take the stairs to the 3rd floor even though my knees are taped up.

8:17am – I’ve been sitting at my computer for over an hour now. My right hip is hurting bad in the groin area (probably the next joint that I will need operated on I’m guessing). Luckily its time to go to the mailroom and get the days deposit so this means I can stand up and walk for a minute. Turns out my right knee is incredibly stiff too so it takes about 10 steps before I can put my full weight on it.

9:38am – Both hands and wrists start to hurt. It has become hard to type with any kind of speed and accuracy. My fingers are swollen and there is more of a burning sensation in the hands and wrists area.

10:25am – Time for a bathroom break. Once again it takes about 10 steps before I can put all of my weight on my right knee. This time a couple of people notice me limping and want to know why. I explain that it is just one of those days. Its somewhat annoying how no one seems to buy this as the reason, I think others think I’m living this extreme life outside of work. I end up taking the long way back to my cubicle so I can get a little more stretched out.

11:53am – Lunchtime. Technically lunch isn’t until noon but I have to get away from my computer now! I limp over to the kitchen to grab my lunch. Today I’m having an organic spinach salad with tuna. I’ve also brought organic apples and carrots with a SmartWater. My ranch dressing is even organic. Must eat healthy and clean.

Today I spent lunch at my computer looking at CNN’s website then doing some writing. Unfortunately I have no self-control otherwise I would walk to the building next door and eat at the little cafeteria in the basement. The cafeteria bakes fresh chocolate chip cookies almost daily and I’ve yet to go there without buying one…ok maybe two on really bad days.

Since my hands and writs are hurting I take 2 Tramadol’s with lunch. I’m still hoping to make it to the gym after work so I need to keep the pain somewhat under control.

2:03pm – I stop working for a second to take my second Gabepentine of the day. I recently had to cut back on this medication because it was making me extremely loopy in my head. The higher doses worked better as far as pain control went, it just wasn’t worth the side effects though. This happens a lot in pain management I’m discovering.

2:54pm – Time for another bathroom break, which means a good excuse to walk around some. I stop by the Fire Marshals section and talk with their administrative assistant for a few minutes. The last hour of the day usually is the toughest as far as pain goes. It’s very similar to being a kid waiting for that last bell to ring before summer break.

4:01pm – I made it through another day. The Tramadol and Gabepentine have held back the pain enough to allow me enough energy to hit the gym before going home.

4:32pm – I start my workout on the stair stepper. My goal is to go for 30 minutes before I switch to weights. Lately reaching 30 minutes has gotten easier despite either my hips or feet going numb around the 20-minute mark. I think my hips are causing the numbness but I’m not 100% sure.

5:12pm – I’m mostly through my weight workout now. My neck has tightened up to the point that it is painful to look right or left.

5:20pm – I’ve run out of energy and pain tolerance at this point so I stop to begin about 15 minutes of cool down stretching. This time varies depending on how I feel after each stretch. I have a progression of stretches I like to go through for after my workouts.

6:08pm – I arrive at my place. Time for a hot shower and then I will make some dinner.

6:42pm – Tonight I’m having an organic turkey wrap with organic chips and pears. I’ve added chia seeds to the wrap too. My dinner pills include 3 Ignite Naturals Digestive Enzymes, 1 hydrocodone (pain pill), 2 Gabepentine, 1 Nabumetone, and 1 Allopurinol. I am tempted to add another hyrdrocodone to my dinner but I want to see how the ice packs do.

I take my dinner over to my couch so I can lie down while I eat. Ice packs go on both knees, one on my neck, and I start the heating pad for my lower back. Hopefully this will relax me enough so I can fall asleep later.

8:42pm – Dose off towards the end of the Colbert Report. Heating pad made the lower back feel better and the ice pack helped the neck.

10:12pm – I take me 1 and half Lexapro along with my fiber supplements and head to bed. I’m still drowsy enough from my little nap that I think I will skip reading tonight and try going directly to sleep.

This is a random day in my life right now. Since my hope is to give you some idea what it is like to have arthritis, I will let you judge if this was a good or bad do for me. All I ask is that you remember that there are over 100 different types of arthritis so just because we look fine doesn’t mean we are!


Comments

A Day in My Life… — No Comments

Leave a Reply

Your email address will not be published. Required fields are marked *