So many times I want to just go cold turkey without meds. However, I am on so many for maintenance of this disease. I will start by saying I remember when I was a new nurse and patients had 2-3 pages of medications they were on in their MAR. I thought to myself my goodness these people are a mess; I feel bad for their poor health. Now, I find myself as one of those people.
I have learned that modern medicine can be a very beneficial thing. I used to frown about having to take Tylenol or Motrin now I have a daily pill holder for my week. I never dreamed I would look my best on the outside but feel the worst ever on the inside. Constant pain, bones aching, joints so stiff you limp if you get up after sitting too long. This is the new normal. However, most of the medications I take are to manage all of my symptoms.
Some of the symptoms I have include:nausea, migraines, TMJ pain, restless legs, insomnia, chronic fatigue daily, muscle spasms, and back aches. I sound like a train wreck when I put it into writing but keep in mind I don’t have every symptom every day. Some days I find myself only with a migraine or severe headache when others, like the cold winter days, I have multiple symptoms.
After going through last winter and losing about 20 pounds not trying to I was put on Zofran twice daily for my nausea. I never had an appetite and when I ate I just wanted to puke. It comes in spurts. I am kind of at that point again. Nothing sounds good so I just pick at foods. I always crave fruit which is great but I hate the ups and downs of my appetite.
The best medication I was put on was Celebrex so far. I am at the maximum dose of 400mg a day and am amazed at how much it helps. I take Modafinal to keep me awake; sometimes twice a day. I take Skelaxin up to 4 times a day for muscle cramps, spasms and soreness. Folic Acid nightly to help me as a piggy back type med to the Methotrexate I take once a week. I also take Melatonin Ultra for sleep. I take a daily steroid in the morning as well.
Something I have not touched on much was the depression aspect of a chronic illness. Despite hearing for over 2 years my illness was all in my head, I knew the mental state I was in was growing more and more weary. The doctors increased my Prozac from 20-40mg to help with my anxiety and added in Abilify this year as it is experimental with patients that have Fibromyalgia along with other autoinflammatory diseases.
So many times I think to myself; “Why do I need pills to sustain me?” The answer is I don’t but to have a happy and better quality of life I do. What truly sustains me in life is my Lord and Savior Jesus Christ. I know if He wants to heal me…He can and He will. However, all I pray is for my heart to stay happy and to be able to do things with my family and friends some times. I may need days off to rest after big events. I may even need my husband to help me up the stairs. But, I am blessed to be off the couch!
I am not writing this to tell you about my medicine cabinet. I’m hopeful that you too can find a medication regimen that works for you and helps control your illness so you can carry out your Activities of Daily Living (ADL’s). Something I never shared with anyone was that there was days that I couldn’t even get the energy for a full shower. I knew it would take too much out of me. I struggled just to go upstairs, to stand and cook was exhausting. I could go on and on. But, now I can do most of those without dread and still have a little energy left over. Maybe not much but enough.
Another part of my treatment plan includes steroidal injections into my joints or head. These are injectable meds so they are much more potent since they are administered straight to the inflamed site. Therefore, I only get a type of injection about every 4-6 weeks. Injections allow you the ability to get sedation but I never do. After all of the things I ask of my friends I don’t want to have to ask for a driver all the time. And with Shane always away working I can’t ask him either. So, I figure if I tolerate daily pain what is a few minutes of agonizing pain going to hurt.
I used to try acupuncture which did help my headaches but it didn’t last long enough for me to keep paying for it. Massage also helped but my muscles would knot right back up within a day or two. Even my massage therapist used to say something isn’t right with you muscles. I don’t understand why they won’t stay released. I am sure part of the tension is from pain and the way your body carries itself different when you are uncomfortable.
You see something I have learned is don’t judge those people with 3 or more pages of medications (some I’m sure are as needed like mine I didn’t list). Don’t assume that person is whiny, or weak, or just giving up. I tried natural stuff. I tried essential oils, massage, saunas, acupuncture, a specialized diet, and no medication at all. I might have felt better for a minute but it never sustained me or touched my pain. I came to the crossroads where I had to suck it up and move forward knowing that I will need medication for this in order to be functional.
I do believe the diet was very helpful and that was the hardest thing to do because I had to give up SOOOO many foods. I had to watch myself for foods that affect interstitial cystitis, fibromyalgia, and arthritis. Mostly, you follow an anti-inflammatory diet. Then, you can try to work a few of the more natural foods in as you follow this plan for a while.
I will discuss my diet plan in another blog soon. I really appreciate those of you who are reading this. I have another post to start and then bedtime it is!