Dear Mr. Skinny and Mr. Snugglebunny,
This is just a quick note, in case you hadn’t noticed, to remind you that I am your mother, I am not:
and most importantly, I am your mother I am not your peer.
Love, Mom
Not only that but I’m pissed… enough is enough. These diseases – I guess that’s what they are – rheumatoid arthritis and fibromyalgia are pissing me off. Yes, I know, I’ve been in denial for 4 years. The next stage of grief is Anger. Yeah, yeah, yeah, it’s normal to be feeling this way. Whatever! I’m tired of feeling this way – physically, emotionally, mentally, spiritually even.
I am at the point where I’m giving up hope and faith, in lots of things. I give up on the medical system, this approach of aiming in the dark and hoping that we actually find something that will work is tiring, it’s draining, and there’s always side effects to deal with. I am grateful that I have access to medical care and that my insurance allows me to get medications that cost over $1000 for a $20 co-pay. I know I’m blessed in this way.
I am tired of not being able to participate as much as I want in my kids’ activities. Tired of having to stop them from giving me big hugs because they hurt my body. Tired of having to tell them to be careful with me when they want to lay in bed and snuggle with me, especially on the weekends. I hate not being able to run around the park with them, not being able to play basketball, not being able to get down on the floor and wrestle with them. Tired of thinking back about the things I wasn’t able to do with my little one, the baby things I wasn’t able to fully enjoy. Something simple like bath time because I couldn’t kneel next to the tub.
I can’t wear the shoes that I want… I love shoes, all kinds of shoes. I can’t wear high heels because of what they do to my feet. I have some heels that I hold on to because I can wear them for sit-down dinners where I won’t be doing much walking. I can’t wear flip-flops because they don’t offer any support. I resorted to wearing slip on sneakers for the ease of putting them on – no shoe laces to tie. No support there either. I have orthotics that were made for my feet, they don’t fit in many shoes – pretty much only in running shoes. So I am confined to running shoes if I want to attempt to have my feet function better. But running shoes can’t go with every outfit. I can’t wear running shoes to an interview with a prospective client. I have to deal with finding flat shoes that are interview worthy but that don’t offer much support for my feet, they can be really comfortable but still not provide much support.
I like to knit, crochet, sew, and do all sorts of other arts and crafts. I am limited in what I can do. Depending on how my hands feel I may not be able to knit or crochet. I hate not being able to do whatever I want.
I can’t dance and that is really upsetting to me. I love to dance! Dance is also a part of my spiritual expression. I can’t dance and that really upsets me. I have to modify and alter how I express myself spiritually because of the chaos happening in my body. My body can’t keep up with my spirit, and that really sucks.
In a nutshell, I’m sick and tired of being sick and tired. I’m pissed at the different ways that this affects my life and I give up in more ways than one.
This is a long post, I needed to get this off my chest. I have a doctor’s appointment today that I needed to clear my head for. I may remove it soon as it may not need to spend a lot of time in the blogosphere.
I love participating in challenges! The competitive side of me kicks in and runs. So, knowing this about myself I continue to trick myself into doing things I want to do anyways. I have noticed that I don’t take the time to read. Sure, I could say I don’t have the time to read but that would be stretching the truth. We’ve all got the same 24 hours. So, in order to get myself reading again I’ve joined the Fall Into Reading 2008 Challenge hosted by Callapider Days.
I would like to read the following books between September 22nd and December 20th:
I’m also waiting for delivery of books from PaperBackSwap:
So, it could be fifteen books I’m tackling this fall. I’m a pretty fast reader, especially if I get engrossed in a book. I read Harry Potter #6 over a weekend, so I’m pretty sure the amount of pages won’t be an issue. The issue will be making sure that the books capture my interest so I’ll actually finish them.
What books are you reading? Are you participating in the Fall Into Reading Challenge? Let me know and I’ll be sure to check on your progress…
Happy reading!
Last night’s post got me thinking about the stages of grief and how those can apply when diagnosed with a chronic illness.
The generally accepted stages of grief are:
These stages are not necessarily linear nor do they have a definite timeline. In other words, someone might not spend precisely two weeks at each stage and then be finished grieving. Grieving is a process and it is individual. It is also possible to go back to a previous stage of grief.
As I said in the last post, I have been in denial for the past four years. Denial was the overarching stage of grief that I was in. During the past four years I have also spent time being angry. I have tried to bargain with God, Creator, Higher Power, the Virgin Mary, the Universe whoever would listen to have the situation be different. I have been depressed, very depressed. I have made some movement towards acceptance. Mostly, I’ve kept going back to denial.
Denial has worked for me in so many ways. Denial got me through a Master’s program. Denial helped me complete two years of internship for the graduate program. Denial also had me volunteering as a room parent. For all intensive purposes, denial helped me live an active lifestyle.
An active lifestyle that caught up with me and now I can’t deny that I have to slow down, I have to let some things go for my sake and my family’s sake. This, of course, is very difficult for me to do. I have always been the one that everyone else could count on, the one to help everyone else, the one to get things done. I have very, very rarely asked for help. It’s not my nature, I have Wonder Woman syndrome. I’ve had it since I was a child when I learned not to count on anyone else but myself. This was also when I learned to be everything for everyone regardless of the cost to me.
And now, after a lifetime of always being there for everyone, doing the right thing, pushing myself to be the best at everything that I do, to not let anyone down, to always meet everyone’s standards to just try to be good enough, it doesn’t even matter. I find myself dealing with a chronic illness, an autoimmune disease that is aggravated by the constant assaults of the stress on my body. A body that is no longer listening to me and that I now have to listen to. And it is saying, “Stop! For the sake of everything you love, stop! Enough is enough!” and I have no choice but to listen.
I don’t want to end up completely disabled and debilitated by this condition. I know that there are a lot of things that I can do to prevent it from getting worse. In order to take action and do those things that will help, I can’t sit in denial any longer. I have to face my situation head on and keep moving forward. I will probably have moments of denial in the future, but not nearly as much or as long as it has been. I am strongly aware of this desire to look the other way and go on as if everything were as it was even five years ago. I am even more aware of the need to face my reality and take action, in baby steps if necessary. Some days will be more difficult than others, I know, and those days I will have to find that place within myself to be able to ask for help to get through it.
This turned into a long post, much longer than I expected.
Everyone: “Hello Mrs. Bubba.”
I have been in denial, and no it’s not a river in Egypt, for over 4 years. My struggle with denial began in March 2004. I began having unusual knee pain. At the time I had been dancing (Aztec dance) for almost eight years. I had previously dislocated my right patella (ouch! I know) and had intermittent knee pain. That knee pain was different, very different from what I was used to.
A visit to Urgent Care yielded the results of taking 800 mg of Ibuprofen 3-4 times a day. It didn’t help, another visit to Urgent Care that yielded a referral to physical therapy and more ibuprofen. Finally, a visit to my Primary Care Provider (PCP) led to a referral to a rheumatologist and a prescription for indomethacin, a different non-steroidal anti-inflammatory drug (NSAID). I went to physical therapy regularly, took the NSAIDs like they were prescribed and still no relief. When I saw the rheumatologist, he was confused, didn’t think it was an arthritic condition but ordered x-rays, blood work and scheduled a follow-up. The first time I saw him was in May or June of 2004. By September of 2004, I had a diagnosis of Rheumatoid Arthritis and prescriptions for DMARDs (disease modifying anti-rheumatic drugs), including a biologic DMARD.
The process of going back and forth to various doctors and the rheumatologist for answers was frustrating, disheartening, stressful, depressing, confusing, and much more. The first few rheumatology appointments had me leaving the doctor’s office in tears. The doctor gave me no hope that I would be able to lead a “normal” life. There was no emotional support for me from the medical community to help me adjust to this new diagnosis. Nothing to help me grieve the life that I was losing.
I had to be strong for my family so I often covered up how I was really feeling. Mr. Bubba knows me too well, I couldn’t fool him. I asked my PCP for a referral to a different rheumatologist, I was definitely not going to continue to leave each appointment in tears with no hope to be able to continue to live a productive life.
My new doctor confirmed the diagnosis, added fibromyalgia to the mix for good measure and got me started on a complex regimen of medications. At one point I was taking 20 pills a day. By the way, I hate pills. One of my meds was an injection that I would do at home every two weeks, I much prefer that to taking pills.
The manifestation of my denial has come in different ways. I continued to push myself, ignoring the physical pain that different activities caused because I was not going to let rheumatoid arthritis beat me. I was locked in a fight against my diagnosis. I refused to be seen as a walking diagnosis. I was not rheumatoid arthritis, I happened to be a 27 year old woman with a diagnosis.
I have been locked in this fight for the past four years. I have pushed through pain, stiffness, flare ups, and more in order to keep going. To keep working, to go to school, to be involved in my kids’ schools, to still be everything for everyone.
I lost this fight. It’s hard to admit it, I cannot be in denial any longer. My body finally told me that enough is enough and I couldn’t help but listen. My days of not listening to my body have to be over. I have been on a flare since November of 2007. That is now 10 months. 10 months out of my life that have been riddled with pain, both physical and emotional. 10 months out of my life that have been miserable. 10 months out of my life during which I withdrew from many things. I wasn’t really here for my family, I wasn’t here for myself, really. 10 months of my life when I pulled away from others so I wouldn’t worry them or be a burden on them – everyone has got something they’re dealing with.
In February of this year I made a decision. A decision that I still question some days but a decision that I know deep in my heart was the right thing to do. I quit my job. I was no longer going to be a therapist at a residential facility for adolescent boys that were involved in the juvenile justice system. I couldn’t be there for them either.
After a lifetime of doing the right thing and being there for everyone else, I find myself in this situation. I find myself with a body that has turned on itself and hurts me rather than helps me. I find myself longing for days with no pain. For days with unlimited energy so that I can keep up with my kids. For days when I smile more, when I actually feel happy. For days when I don’t have to think about not being able to do something because it will hurt.
This is my reality. I have to modify activities, I have pain EVERYDAY, my body will never be the same as it was before March 2004 when the symptoms became active. There is a theory that I’ve had RA for longer than that but it didn’t become symptomatic until then. I cannot deny this reality any longer. This is what is normal now.
Thank you for reading this post. It was very difficult for me to write it.
We are an animal loving family. In the past we’ve had dogs, rabbits, finches, turtles, fish.
We’ve had Gizmo, our short-haired Chihuahua mix for almost seven years. He was given to Mr. Skinny on Christmas 2001. My uncle gave my son Gizmo without consulting us first. Gizmo went to visit the vet today. He got updated shots and a general check-up. Since he’s a boy he got his prostate checked. Ouch! We never got him neutered because he is not in regular contact with other dogs. Well, he has one testicle in his abdomen, so he has to get neutered so he won’t get cancer. I’ll take him for that procedure in two weeks. After his appointment Gizmo and I went up the street to the pet store. He has a hard time in the car so I bought him a harness for the car that you can put the seat belt on. Turns out it was very similar to the harness we have for walking him, we don’t use a regular collar because he had neck pain in the past and we were told to use a harness instead.
So this afternoon, with my mom and the kids we went back to the pet store to return the seat belt harness. We started looking around and my mom decided she wanted to get a fish set-up. Tropical fish for freshwater. So we bought the tank, gravel, etc. We are going to set up the tank first and then go back to buy fish.
We checked on a new cage for the parakeets since the one we have is a pain to clean. You have to get the birds out, put them in a small carrying cage and then take the whole thing apart. We should have gotten one with the slide out tray for easier cleaning. Well, we got a new cage and then my mom saw parakeets. She decided she wanted one, and I couldn’t say no since it is her birthday today. She also told me I had to get one for myself.
So the current animal count in the house is 5 with more to come in the next few days. Gizmo, the parakeets are Suzy and Uniqua (the ones in the above picture) and the new ones are Eeyore and Wonder. My mom is a huge Eeyore fan and her new parakeet is grey and blue. Mine is grey with turquoise. Mr. Snugglebunny thinks I should call it Red like from Red Robin, Mr. Bubba suggested Turkey since it’s turquoise. I think I’ll call it Wonder, for my love of Wonder Woman but since I don’t know my parakeet’s gender we’ll just call it Wonder. After we’ve got the tank set up, the water conditioned and tested then we’ll go back and get fish. We’ll see what happens with that.
