Today I’m interviewing Fibro Warrior, Hilary, a pharmacy technician from Wilmington, Delaware.
Give us some basics.
I’m going to be 60 in October, and I have been married for 35 years this coming August to Steve (the love of my life and soul mate). We have two kids, ages 25 and 27, and I have one daughter, age 42, from a previous life. I have three grandchildren ages 14, 17, 20, two beautiful cats (one is 10 the other 15), and a fabulous Beagle that’s 4½ yrs old. For enjoyment we go to wine tastings at local wineries, and explore the local area. Since hubby is a Flight Attendant, I love traveling with him and exploring the old European cities and also right here in the good Ol’ USA. When he’s not home I love sewing. I make handbags and (try to) sell them.
When were you diagnosed? How old were you at the time?
My doc mentioned it a while ago (20 something yrs). At the time, they did nothing. If I needed a muscle relaxer or pain meds, I’d call and one prescription could last me a few months.
What lead up to your diagnosis?
Things got worse around Dec 2013. My new doc ran a million blood tests, and sent me to a Rheumatologist; I’ve been told I have arthritis (like I didn’t know that! –that’s me being sarcastic) and an auto immune thingy going on. The tests consistently show that things are off. I could have told them that. I did a stupid thing in Oct. 2013, and jumped at the chance to go to a pain clinic that supposedly specialized in Fibro.
That turned out to be a 30-day mistake. I got about 40 shots in my neck and shoulders in less than a month. One day they pissed me off so much; I said I was still in so much pain and they would not give me anything for relief except Tizanidine (which really messed me up), I went home and cried for hours. (One of the benefits of being home alone… nobody sees your cry!)
The next day I called my family doctor and made an appointment. More blood tests, and prescriptions for Duloxetine, gabapentin, and tramadol. Now I have to go to a Gastro guy, because my liver counts are high –Duh (more sarcasm)– I take all those meds plus fish oil, co-q10, and cholesterol meds! But of course I have to go the specialist for this, too. I have all 18 trigger points that are excruciatingly painful, but, although I am always tired, I am not always exhausted. I rarely get to the point where I can’t move. I guess I’m lucky that way. From standing all day at work, I get more sore than anything. Long walks take a lot out of me, but warm baths with Epsom salts helps.
What was your life like?
I was married and working. My oldest son (27) lives with us, but is only a little help. He believes it’s all in my head and if I would just exercise, it would all be fine. I was a 2nd degree Black Belt, and owned a Karate school most of his Jr. high and High School years, so he thinks that’s how I should be 15 years later. (I guess he hasn’t experienced getting older yet.)
How did your family initially handle your illness?
As I said, son not so much, but my hubby tries. He gets frustrated and yells once in a while, but I leave so much for him to do when he’s home, I’m don’t blame him. I’m OK sitting here typing, but after I’ll prob hurt like heck getting up. I can’t vacuum, it kills me, and this cold weather does not help. So I guess you can say they just kinda believe it.
What do you feel is the most challenging aspect of Fibro?
Not being as active as I used to be! I still sew, but it seems like it takes a lot to get me into my sewing room now. I used to get in there with every free second.
Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
I have insomnia, arthritis, and auto-immune. They all exacerbate the Fibro!!! When I get a flare from arthritis, or not enough sleep, the Fibro flares as well. Of course, nerves play a big part. Things are not all honky dory these days.
What (if anything) have you found/ done that has improved your symptoms?
Having the time to relax, when I need to, helps. Whether it’s a good book and time on the couch, a warm shower, a salts bath, or just a hug and a glass of wine, I just try to find something to take my mind off the pain.
How open are you with friends & family about your illness & symptoms?
I’m very open… No sense in hiding it. I don’t want to be known as lazy or antisocial.
What is the best advice you’ve received regarding Fibromyalgia?
Take time to do something for yourself, whatever it is that will make you feel good at the moment.
Take time to do something for yourself, whatever it is that will make you feel good in this moment. Share on X
What was the worst advice that you followed?
That my family doctor wouldn’t know anything and I should just go to a pain clinic.
What is your favorite way to cope with your life as a spoonie?
A warm bath with my good friend Mary Jane.
What is it that inspires you to keep going, despite your illness?
My husband. We want to be around to hassle our kids as long as our folks (his dad is still alive) did.
What is one thing you’ve learned about yourself since your diagnosis?
That while I’m not as strong as I used to be, and can’t do all the old things, I am STRONGER now!
What is the most important piece of advice you would give to someone newly diagnosed with Fibro (or even still seeking a diagnosis)?
Research! Talk to someone who can understand what you are going through.. and go to your regular doctor.. if he’s unwilling, then find someone that can!
If you’d like to connect with Hilary, you can email her at shdb802@gmail.com or find her on Facebook – Hilary Neumann.
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