One of my purposes for starting this blog was to keep my friends and family up to date with the latest status of my health. So for those who’ve been following me as I press my various life experiences upon you, this may seem a bit mundane. It is, however, in response to the many caring people who’ve been asking after the current state of affairs. Here you have it in all its glory.
As mentioned in a previous post I have started on the Humira treatment. These injections are both dangerous and helpful. Confused? Me too, you can read a little about it at the link above. Humira takes a long time to really begin working with your body; they tell me that after about six months of injections I should be able to determine whether or not this treatment is proving to be beneficial. I started at the end of December so in June / July I will be able to report on whether or not I am responding well to the treatment. Also at that time we will be revisiting whether or not a trip to the Mayo Clinic is on the horizon. My thoughts about that are still mixed. There are days when I think that I would rather not pursue that complicated and costly path and then there are others when I’m suffering enough that I wonder if it might be worthwhile after all. I have so many new followers that if you’re interested in reading about how I feel about the Mayo Clinic you can read my previous post here. In the meantime I have to admit that I’m feeling a bit discouraged with the Humira. I’m not seeing any benefits so far and the side effects are proving to be a bit of a challenge. I still have faith that I’ve chosen the right path so I will continue to trust in that and soldier on hoping that things will improve with time.
As for what my body is doing currently, it isn’t pretty. There, I’ve warned you, so if you’re not interested in the gory details feel free to close your browser window and move on to greener pastures.
My blood tests show the following: Despite the fact that Crohn’s disease is starving me to death, my triglycerides are high so they have started me on a medication for that. Additionally, although I am already on a “statin” drug for cholesterol, my LDL (or what I like to refer to as my “lousy” cholesterol number) is also on the rise. I am thirsty. “Go drink some water,” did you say? Well duh! When I say thirsty; I mean crazy, parched, crawling through the desert for days thirsty and I am peeing all of the time. (Even more than usual for me with the interstitial cystitis.) Gosh, I spend a lot of time in the bathroom! So, if you are familiar with type 2 diabetes you know what all of this means. We’ve been trying to hold it off for years. I’ve been pre-diabetic for a long time and with the help of oral medications used by diabetics in combination with diet and exercise I’ve been able to control my blood sugar pretty well. Now these numbers are trending in the wrong direction. Most of us, myself included, associate adult diabetes with being overweight. In my case it is purely faulty genetics. I fluctuate between 120 and 125 lbs and, at the height of 5 ft. 8 in.; I’m positively skinny so we can’t contribute it to my weight, diet or exercise. URGH! This made me mad because I thought “Well if I’m going to have high cholesterol numbers and the threat of diabetes at least it should be because I’ve been eating something really yummy and terribly bad for me like chili cheese fries yum!” Uh, no. I can hardly eat anything at all so…
On to my organs which are misbehaving terribly. I would put them in time out for their misdeeds but then I’d really be in trouble. My kidneys are putzing along and my liver function is also a little low. These tests have been low in the past and always seem to bounce back, however; we aren’t seeing any improvement over time. Luckily the numbers aren’t going in the wrong direction either so the Docs think that we’re ok for the time being but we’ll be keeping tabs on those two, well technically three since I do have two kidneys. That’s right kidneys and liver, I’ve got my eye on you!
My electrolytes are low. Ok so this is a mystery because I’m crazy thirsty and that doesn’t follow the appropriate tendencies when you’re missing some essential salts in your system. Hey, when have I ever been normal? The most urgent is the fact that my potassium is extremely low despite the fact that I already take a prescription potassium supplement. This can be really hard on your heart; low potassium can be very dangerous. In me it is likely due to the Crohn’s disease. I can tell it is low because I’m having more and more “charley horses.” Danged cramps; most of the time it’s in the balls of my feet or my calves. A few days ago I actually had one in my neck. Yep, that was fun! So my rheumy upped the dose from one potassium pill a day to three a day. No matter what I do it doesn’t seem to be helping though so we are watching that as well. Too bad I hate bananas although I hear potatoes are a good source of potassium, but wait; they are also a simple carbohydrate so they’re bad for diabetes. Hmmm, dried apricots anyone? Nope, wait again; they are too high in sugar. Ok, let’s try dark leafy greens, oh dear, not so good on the Crohn’s infested bowels. Do you see my problem? At this point I might as well stop eating all together and just pop pills all day long. Ugh!
This leads me to the other drugs I’m on. My nerve pain has increased so we’ve doubled the neurontin dose I take each day. The nerve pain is caused by “puffiness” in my major joints. This swelling starts to push against the nerves and before you know it I feel like I’m on fire. It’s a bit like shingles, which I’ve had before, twice, so I know how excruciating that can be, only instead of localized to the shingles outbreak it is all over. So far the increased dose of neurontin seems to be helping but the side effects are interesting. Those who know me well can vouch for the fact that I am the clumsiest person EVER! It really is hilarious… and sad… no… more hilarious. So when I read the label on the drug that shows a picture exactly like the one below accompanied by the warning, “This drug may make you clumsy.” I laughed so hard I fell right over. I think I even peed myself a little. Your body eventually builds up a tolerance to neurontin but I’m not there yet so if you see me stumble around a bit now you know. Just laugh with me when I fall, it helps soothe my wounded pride!
I’m also still on the prednisone. I hate this drug, it makes me insane. I’m serious; it makes me act like a crazy person. I get really mad at the littlest things. The mood swings remind me a bit of PMS. Since I had a hysterectomy at the age of 24 I was hoping that this kind of thing was an issue of the past. Well, apparently not! I’ve become a raging ball of mixed up emotions all over again. The other day some lady passed me in the store and I thought she was staring at me (of course she wasn’t.) In my prednisone induced emotional insanity I wanted to ram my shopping cart right into her. Luckily the higher reasoning centers of my brain kicked in just in time to spare her my delusional imaginings. Holy cow, what a trip! When you’ve been on a steroid you can’t just “stop” taking it they have to wean you off very slowly. Each time we’ve tried this process the Chron’s flares its ugly head and my joint pain increases ten-fold so we’ve had to keep the dose steady for several months now. Just don’t look at me funny, you never know if I’ll be able to keep my crazy in check.
Now for some good news; my sed-rates are down. For those unfamiliar with this term, it is a blood test that measures the amount of inflammation present in your body. In truth you should take the numbers from this test with a grain of salt. Many who have low sed-rate numbers are still in quite a bit of pain while others who have extremely high numbers have reported that they feel fine. The normal range is usually below 20 although my rheumy likes to shoot for a number somewhere below 10. Most people make the mistake of associating RA and AS with joint pain only but, because they are both immunologically related, they actually have systemic ramifications throughout the entire body. For instance they both can cause extreme fatigue, “flu-like” symptoms, dry eyes and the list goes on. The Crohn’s also causes sed-rates to rise because of the inflammation in the digestive system. A few months ago my sed-rates were hovering in the high 60’s to 70’s and I have to say I felt like pooh! (Pun intended, mind you.) My last tests came back in the low 30’s. This is still relatively high which explains the aches and pains but hey, for once the numbers are moving in the right direction… down! So I’ll take it and celebrate! Wait, I can’t really jump up and down, somebody do it for me quick!
Are you back now? Thanks, I needed that! There you have it. Feel free to gasp, sigh in frustration, or send me positive thoughts and prayers. Please don’t feel sorry for me though. I have decided that this has been a good thing for me… in general… most of the time… (ok realistically I feel like that today but check back tomorrow, the mood may have shifted.) Seriously though, this isn’t the prednisone talking either. I’ve gained new perspectives on life and how I spend my time over the past several years that have been life altering. These lessons have certainly been difficult but with each new challenge my focus sharpens just a little bit more onto what is most important in life. My focus right now? My faith and family. I have to be so careful with how I spend my time and use up my energy and not to be morbid, but sometimes I’ll admit that it would be really nice to be done with this life. So many people want to know if I’m better yet. I’m sorry to report that I won’t be getting better, I may feel relatively better as time and drug treatments do their work, but these diseases aren’t going away. It is in these dark hours that I remember I am a wife, mother, daughter, sister, friend… you name it. Most of all I am a daughter of God who is a loving Father and He knows what I face and wants me to rely on Him through my faith. I still have things here on earth that I know I’m to accomplish. I have a purpose here, one that I’m constantly exploring, but it exists and I respect that. With this in mind I’ve learned to change my perspective. In fact, my focal point often shifts on an hourly, almost moment by moment basis. This is the ultimate goal we all talk about, living in the moment. Well I have to tell you that suffering an invisible, chronic illness that will never go away, offers one many opportunities to stay in the moment. At times I feel held prisoner in moments of pain, while at others I remember to take a deep breath and enjoy the fleeting instances of my boys’ childhoods or the pure moments of joy that come from enjoying the blessings of simply being alive.
“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss,or I can choose to rise from the pain and treasure the most precious gift I have – life itself.”
Finally to all of my friends, family and this blogging community, I want to express my appreciation for your continued support. I am deeply moved by the fact that my little, insignificant blog seems to have touched so many. This wasn’t my purpose in the beginning but I’m glad that there is a way I can serve others. So many times I feel inadequate and unable to offer anything of value and yet, because of all of you, this blog has given me an opportunity to share my experiences and feel the love of so many. I am profoundly grateful, thank you. I’ll leave you with this final thought…
Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.
Let your lights shine people….