"All around the mulberry bush, the monkey chased the weasel"....sound familiar? :)

General Blog
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The last few months have been my own personal hell on Earth. Now usually, I'm a pretty positive person, and can take a step back from nasty situations and just deal. But I'm tired. I am tired of having no energy. I'm tired of having debilitating pain in my joints that keeps me from doing much more than get out of bed, hobble to the chair in the living room, and then hobble back to bed (with copious amounts of ice alternated with the heating pad no matter where I sit). I am tired of having tiny bits of my DNA falling off my arms, legs, scalp, back, and feet from the psoriasis that just won't go away. I'm tired of psyching myself into a daily humongous guilt trip because I just don't have it in me to what little I could do even a month or two ago.

I have dealt with this (usually keeping my equanimity) for 4 looooooong years. Just for an exciting change, last week I had a flare on top of my normal flare. My poor, loving, beleaguered hubby recognized the symptoms even before I did. He's so cute. He looked me straight in the eye (brave), and told me I'm in a nasty flare and to start taking my Prednisone again. I really really really really really hate that stuff...I especially hate how it makes my skin feel like it is tight and itchy and ready to split. Oh, and the horrific spastic, frenetic crazy that keeps me from getting much more than a couple of hours of sleep at a time. Not to mention the hot flashes and flushed face and neck it gives me. And have I mentioned the nutty food cravings lately?? Hubby calls it pregnizone since I have so many lovely side effects that mimic the joys of procreation. I can't decide if it brings back lovely <snort> memories of pregnancy or menopause...maybe a bit of both. Joy of joys!

Every time I decide that I am absolutely, positively NOT going to take any other projects on, I end up getting weaseled into committing to do something I know I don't have the energy for, and know I won't be able to finish. Okay...maybe "weaseled" is a bit strong. Actually, it's more, I have some mad skills that can be useful to people, so they ask me to do something and I know I'll feel guilty if I say no. It is a crazy merry-go-round in purgatory. I have always despised those people (you know who they are) who say, "oh sure, I'd LOVE to do"x"," and then the day (or hour) before "x" is supposed to be done says, "oh, I just couldn't get to it." Which of course makes everyone else scramble like mad orangutans on crack to make "x" happen on time. I DON'T WANNA BE THAT PERSON! So I push myself harder and harder each day to make sure I don't turn into that person, which just makes my flare worse, which makes everything hurt 100% more, which makes it harder to do anything, which means....oh crap. I am that person. <shakes head in disgust>

So, I'm kind of a results-driven person, and I like to make lists and write out action steps so I have a really clear road map to where I'm going in life. Four years ago I got hit with the "double whammy" (has anyone else seen that commercial? Cracks me up). Two years ago my "life map" got tossed out the window. So now, instead of a "life map", I've been trying to make month maps, or week maps...shoot some days I'm making hour maps. <insert chuckle here>. Wednesday: 1) Get out of bed. 2) wash face, brush teeth. 3) go back to bed...just doesn't have the same ring to it as saving the world, righting all wrongs, fighting for social justice, etc.

So now I'm done with my latest rant. I apologize to all and sundry, and hope that your days are going a bit better.

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Sorry to hear you are having a rough time. What meds are you on besides the predisone.

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Hi Rebel mom. I'm taking the MTX, sulfasalazine (IBS), NSAIDS, Folic acid, an Rx allergy med, fish oil, a multi vitamin (I tend to get anemic easily, so the iron in the multi vitamin is useful for prevention - not to mention the vitamin D and calcium that is necessary for us post menopausal types), amatriptylin (an anti depressant that actually works pretty well for nerve pain), a Rx for high blood pressure, and vicodin/cyclobenzaprine for really bad days with really rough pain and muscle spasms. I'm on hiatus from Enbrel, which stopped working for me, and awaiting the beginning of Remicade treatment. I've done the biological carousel, Humira, Enbrel, Remicade, back to Enbrel, and now heading back to Remicade. Of the three, the rem. was the only one that led to a measurable, recognizable reduction in symptoms. But when I moved out of state, I had to go back to Enbrel (self injections) until I could find a place to infuse the Remicade that wouldn't break the bank. Now I've found it, but am in a holding pattern until the Patient Assistance program and the clinic that will infuse work out the paperwork. For awhile I was only taking stuff to alleviate symptoms because of some financial issues and a huge jump in the cost of MTX - yikes! I imagine this latest descent into misery is related to being off the MTX, and I just have to get caught up again. I just hope the reduction in symptoms happens sooner rather than later :)

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Sybil, you are always just the most sincere and kind person! Thank you so much.

I know (logically) that I need to give myself a break and just stop trying to do everything, but there is some strange compulsion in me that keeps telling myself that as soon as I do that, I will become the person who sits around and sighs, "poor, poor, pitiful me," and that would literally kill me. I just can't do it. If you think I'm driven, you should see my Mom. That woman is like Margaret Thatcher, Mother Theresa, and a high powered CEO all rolled up into one person. When she was diagnosed with late stage colon cancer, and the doctors basically told her to make her peace, she rebelled. Big time. A friend who had gone through cancer wrote her daily pep talks and encouraged her to push through it all and she did. She has now been cancer free for 2 (almost 3) years. A far cry from the death sentence her doctors gave her. Everyone we know is (including her doctors) were amazed and continue to be to this day. So, of course, she believes strongly that this is exactly what I should do, and sends me all these seemingly harmless tasks to complete (using a really effective combination of guilt and "pick yourself up by your bootstraps" mentality to push me into to accepting more and more responsibility from her shoulders. My parents are starting a nonprofit (their third), and she has me writing all the documents to make that happen and to be the point of contact for the pro bono attorney. Then late last month she decided it has been far too long since the family has gotten together, and assigned me the role of planning and implementing the whole family reunion in July of this year.

I recently took the advice of several people on here and wrote a really powerful letter to myself - all about accepting where I am, who I am, and my "changed circumstances." It ended up being very carthartic (I laughed, I cried), and instead of crumpling it up and throwing it away - or burning it in effigy - I decided to type it up and email it to my husband and kids, my extended family, and my husband's family. You see, I'm going to see my extended family in July, and my husband's extended family in June for family reunions. Planning our family reunion was one of those seemingly harmless tasks my mother handed to me. I knew that many people in our collective families are going to have a really hard time seeing how things have changed. I walk with a cane, or a walker, or even (god forbid) have to use a wheelchair sometimes. My stamina is seriously compromised. I take handfuls of pills daily, and self injections weekly. I knew that they would never understand. So I sent the letter. My mom wrote me back and it was very sweet, but with a spine of steel (as expected). My sister in law wrote back asking if that letter was my way of saying I wasn't coming to the family reunion. As the reunion is being held at her house, and I promised her I and my brood would do most of the work, I understood completely where she was coming from, and assured her that I would be there barring death or some other life threatening problem. Such are the dynamics in my family. My other brother and sister have not responded at all, which is typical and not unexpected from them. My husband's family have not responded either (which was what I expected). Truthfully I sent it to them for me, not for them, so I'm okay with them dealing with it however they need to.

So I am in the process of accepting me. It is a bumpy and painful ride, but a journey that I have to take. I am so happy that I have this support group to muse to when I need it. I hope that everyone here understands that when I write these blogs, it is just my way of coping, and not an accurate depiction of who I am daily - but really it doesn't matter much, as I don't know many people here, and will likely never meet anyone. Which, when I put it that way sounds really self-absorbed and kind of not nice, but isn't meant that way at all...but I'm sure you all also know that too! :)

Thanks again,

Kelly

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Hi Kelly,

I took part in a meditation and stress reduction course last fall. It was very helpful. One of the activities we did near the end of the series of classes was to write a letter to ourselves. In it we were to outline what we had learned about ourselves and the "issues" that had led us each to join the class. The letter was to stress the things learned, the things we hoped to remember, and the things that impressed us about ourselves. The facilitator took our letters and promised to mail them to us at some point in the future. A couple of weeks ago I got my own letter back. And I cried.

In the letter I told myself that I was proud of how I had been coping with my disease, I encouraged myself to keep up with meditation and mindfulness practice (have you ever mindfully eaten a raisin?--it takes a LONG time so you can imagine mindful practice slows life down considerably) and lastly I told myself that I needed to stop being so hard on myself. I judge myself far more harshly than anyone else. Most everyone is kinder and more forgiving of me than I am of myself. That was what made me cry!

Having high expectations is not a bad thing. Holding yourself to expectations that you can no longer meet because of the realities of your illness is an exercise in daily disappointment. Learning to re-frame my expectations is the ongoing struggle. No one is in charge of your happiness except you. Peace.

Jane

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Jane, I hope it's all right, but I copied and pasted your last paragraph to a word document, printed it out, and now have it posted in several places (including the bathroom mirror, the corner of my computer monitor, and a folded up version in my wallet). That was exactly what I needed to "hear" and to see every single day. thank you!