Hello, my first name is Ramona. I currently live in the beautiful Pacific Northwest in DuPont, Washington.
The term “Spoonie” was only recently discovered by me. It’s funny because previously I always warned I had so many “stoops or bend overs in a day.” “The spoon theory is a disability metaphor and neologism used to explain the reduced amount of energy available for activities of living and productive tasks that may result from disability or chronic illness. Wikipedia”
I have previously written a blog chronicling as it happened, my breast cancer experience from mammogram to biopsy to surgery to chemo to radiation and post-treatment. 17 months worth.
I had also started an arthritis blog a couple of years ago, then decided to move to this blog site and start over here. My blogging is actually more for me to get that inner chatter out there. If it helps someone else all the better!
My official diagnosis relating to this site (there are more) are:
- Inflammatory Arthritis
- Seronegative Rheumatoid Arthritis of Multiple Sites
- Generalized Osteoarthrosis Involving Multiple Sites
- Primary Osteoarthritis of Right Knee
- Lumbar Degenerative Disc Disease, Advanced
- Myalgia and Myositis
- Chemo onset Peripheral Neuropathy
My first onset of both RA and Fibromyalgia was in 1993. I was diagnosed by a well-known Rheumatologist in Tacoma. I had a run of a 6-year flare-up that was unrelenting. I could barely walk, wore Birkenstocks for these 6 years. I used a cane. I became suicidal at about year 3 and went into therapy for 3 years. I saw death as the only way out of my physical pain. I could not see the light. As miracles sometimes happen, I went into remission in the summer of ’99 and maintained that until 2016. Post-cancer treatment the RA came back with a vengeance!
I mentioned in an earlier blog that my Fibromyalgia can be dated back to my childhood. There are many sprinklings of tears from being hurt by others who were just doing normal childhood fun things like poking. These were very painful for me and I just did not understand why they were being so cruel when they knew it hurt. Of course, I never guessed it didn’t hurt them!
My current med regime related to the above diagnosis is:
- Methotrexate 2.5 MG Tabs 6 tabs 1 time a week
- Folic Acid 1 MG Tabs 1 daily
- Hydroxychloroquine 200 MG Tabs 2 tabs daily
- Gabapentin 300 MG Caps 3 times daily
When my Neuropathy worsens I take OTC (with doc blessings):
- Alpha Lipoic Acid 600 MG
- B-100 Complex Time Release Vitamins
- Every 4 months I get two infusions of Rituxan. This has been wonderfully helpful in reducing inflammation in my body and therefore reducing pain. Humira would have been the drug of choice but my recent cancer ruled that one out.
I still rely on a cane, sometimes a walker. After the Rituxan infusion in August, overall, I’m feeling better. Well… except for my back that has been nagging for about a month!
It’s heartbreaking to read other blogs and problems folks have had with doctors and referrals. I have to say I have never encountered this. Ever. My RA doc is compassionate and listens and writes down everything I say. I count myself very fortunate in this regard.
It’s been extremely hard to come to grips with how my body is changing and the inability to do things I once could. For years I’ve shared with David in tears that I feel like I keep giving pieces of myself away. I’ve had resistance for help sometimes because that meant things really were that bad. I’m stubborn sometimes! I can’t stand for very long so even a simple meditative act like preparing dinner can be quite painful if it takes too long. I have to find times that I can sit down and rest in the middle of food prep! Sometimes I will stand there chopping or whatever in tears because I’m in so much pain but can’t stop at that point. Fuck!!! I can only vacuum one room at a time and that’s pushing it. I can’t go for a walk, though I try on occasion, or purposefully walk a small parking lot. I can’t grocery shop now for years. I dress differently than I used to because of mobility issues.
I’m open with how I’m feeling to others. I lay it out there. I can’t go to lunch, I’m in too much pain, or can’t walk well today. I ask people who want to meet up if there are a lot of stairs because I have a lot of trouble with them. Or, if parking is too far from the front door. They don’t know unless I tell them. I’m looking out for me and I WILL TAKE CARE OF ME!
By far my biggest coping still is to wallow in my pain and suffering. Cry, a lot. Seriously, I go with it, I GRIEVE it, I feel it. The trick here for me is to recognize when enough is enough and pull myself out. This works for me. Seriously. I have a vision board next to my bed and when I sit up it’s the first thing I see. I do the affirmations in my head or, if need be because the pain is bad I say them aloud. I’ve gotten really good at distracting myself and pulling myself out of the negative game. More on this later…
This handsome guy is my partner, best friend, love of my life… etc. He has been a wonderful partner in all of the things that have happened to me in the past several years. What a guy. To his immense credit is his ability to manage his own self-care. He hikes weekly, yearly goes on BIG hikes with another male friend. Then there are minor other things he does. The point is, his caring for himself adds to my life as well… the woman with the “tiny life.” The woman whose body does not function in the morning or in the evening. The woman who is limited in what she’s able to do during the course of the day. Anywhom…
My self-care comes in many different ways. Last year I began a Law of Attraction quest. Having been a counselor myself for my career, I have a perhaps deeper understanding of thought replacement. I understand the adage of-
“We humans, it seems, have anywhere from 12,000 to 60,000 thoughts per day. But according to some research, as many as 98 percent of them are exactly the same as we had the day before. Talk about creatures of habit! Even more significant, 80 percent of our thoughts are negative.” Jennifer Read Hawthorne
Whether or not you believe this, I believe, in my own experience, that is somewhat close to the truth. The LOA quest was to help with this. Negative thoughts did not help me and kept me stuck in that mindset. Who needs that? I’m not saying I don’t sometimes veer off into negativity… I have some very bad thoughts when dealing with more than reasonable pain that goes on for days… but… I have a better grasp at recognizing it and pulling myself out of it. Positive affirmations do help me! Writing things down helps me, gardening helps me, artsy/craftsy things help me. Creating helps balance the pain, and I swear sometimes helps pull me out of it.
LOA has allowed me to accept what has happened to my body. Before I had radical acceptance- meaning I may not like it, but I accept it as a reality. LOA offered me complete and total acceptance. Enough of that, bottom line- it helped me in many ways and that’s all that matters.
The question of advice to give others just being diagnosed or going through the same illness- life happens… shit happens… it’s the luck of the draw. Pay attention to what’s happening to your body, write it down so you don’t forget to share with your doctor, in detail. I have at times written things down and given it to my doc and told him to add it to my notes. I expect documentation from my doctors that reflect what I’m telling them. Most insurances have Care Management programs, if you have problems check to see if yours has that program, they will help you. Be persistent but don’t be a pain in the ass. Doctor offices have a low tolerance for that. Be calm, be polite, even be sweet, make your needs known. Understand an office persons limitations, they can only share information with the doc, not much more. You may think you know what’s happening to you… if you don’t hear what you think… you perhaps need to be a little more open. Just make sure you get a really good explanation that you understand, and it’s okay to tell the doc you don’t understand.
Me during chemo and chemo-brain:
Doc- explaining a medical thing… “do you understand?”
Doc- explains again… “do you understand?”
Me- Sorry, no, my brain isn’t getting it!
Me- I don’t get it, and apparently am not going to. Doesn’t make sense. Let’s table this. Call it good. Maybe it will sink in… later.