So You Like Pain?

I was thinking of pain this morning as I opened my eyes to wake up from a longer night’s sleep than usual. I’m happy that I have been able to fall asleep earlier than I have become accustomed to.  I don’t like insomnia. I enjoy sleeping, I enjoy dreams, no matter what type. They’re my entertainment. I could feel it in my lower back again, radiating around to the front. It could just be my back even though it feels like I have been crushed between metal. I don’t even want to think that it could be my kidneys. It’s probably my back.

Wood Roses in bloom

Wood Roses in bloom

I thought about how there are different types of pain. The title for this blog came from a “Zine” that we had to create in groups of about four students in one of my college English classes. We all liked tattoos and body piercings so we worked on a zine which was about “pain,” which we all knew was really no pain at all. Just a little “pinch” or reminder that we are still alive but unrepresentative of what real pain is, with a “present” of a tattoo or piercing at the end. If I only knew to not take anything in life for granted. Every single sensation, no matter how “ordinary.”

I also never knew that there are a wide array of different types of pain. Inflammation of any and all joints, various back pain, gallstones, nerve damage in the feet, excruciating headaches, neck & shoulder pain, a spinal tap gone bad, and I’m sure there are more that I’ve missed. Pain where we never knew there could be pain. Sometimes if someone I’m close to asks how I’m doing while I suffer in silence with my pain, I’ll say something like, “If you cut me right above the waist and cut my head off, then I’ll be fine.” The only place I didn’t have pain that day was my mid body. They laugh, we don’t have to talk about it anymore, and we go on to our silences or whatever else we may have been doing. It works for both of us. 🙂 Today we can keep my legs, just get rid of anything above my belly button. 🙂 What intrigued me was that not all pain medicine works for the same thing. I did not know this. I think it’s a gift not to know this. Ignorance truly is bliss.

You would think that the stronger the pain medication, it should be able to help with everything up to that pain level, right? Wrong. Pain medicine that I usually use for my back doesn’t work for inflammation of joints, nerve damage, or headaches. It’s also a hit or miss, like everything else. Sometimes it works, sometimes it doesn’t. If it at least alleviates the pain and hopefully knocks it under that pain threshold that makes it “tolerable” is preferred over the suffering. Ibuprofen, while I was taking it (before this “Lupus Hissy Fit” happened), actually worked for my pain due to inflammation; while Tylenol & pain medicine didn’t work).

The bad headaches, forget it, the only thing that I found that works 80% of the time (don’t get me wrong, I’m extremely and eternally grateful that my Neurologist gave this to me) is Relpax; however Sumatriptan helps 60% of the time. But boy are those expensive and my insurance will cover it once per month and I can’t afford to pay over $200 out of pocket for 6 pills. So I have to pick and choose which headaches I will take a pill for or I will run out and have nothing, or Sumatriptan until I run out of that. Sometimes I’ll get these headaches everyday. If they’re “tolerable” headaches, I just take a Tylenol if I must.

There is nothing for the nerve damage in my feet (Morton Neuromas). Boy do they suck big time. At least I’m not dealing with that right now, I think I mentioned it before, but it was strange, since December’s flare and medical issues, my pain from the nerve damage has gone away for the first time in about seven years. I had to actually count to guesstimate as I don’t remember how long it has been. My Podiatrist tried Cortisone shots in my nerves. He said my options were: Cortisone shot, surgery, Orthopedic shoes. I knew better shoes weren’t going to work because I was in tremendous pain as a lie down in bed wanting to sleep but too much pain to be able to think about anything else. And there was nothing wrong with my shoes. I never wore heals. I loved my boots, Dc Martens, Diesel, Converse, and other shoes. I eventually bought inserts but that didn’t work either. I finally found some really good inserts (I should’ve written down the name and all of the product information so I could find another one now that I need a replacement) as they are very comfortable. The Cortisone shots were hell. I don’t mind needles at all, but those shots scared me because they were the most painful shots I have ever had, seemed like it took forever to administer, and sometimes were more sore than the nerve damage. Or at least that’s what I would be thinking at the moment of injection. The first shot was a miracle (after about an hour and the pain from the shot started to subside). I lived “pain free” in my foot again (at this time I only had it in my left foot) and I was quite happy about that. At that time in my life it took me a long time to report anything new to my doctors, especially if I didn’t have an appointment. I had become so accustomed to doctors shrugging and either saying that they didn’t know or “it’s just the Lupus” that it was a waste of my time to ask. I already knew the answer. “It’s just the Lupus.” And an answer wasn’t exactly what I wanted. I wanted the doctor to fix it and make it go away. So I had been walking with the pain in my foot for about two years before talking to my PCP who gave me a referral to see a Podiatrist. Unfortunately for me, the shot wore off in a month. It’s apparently different for each individual but he had said it would last some people up to 6 months. I was hoping I would be amongst those people. I wanted to avoid surgery so the shots seemed like my only viable option (other than just suffer, which wasn’t acceptable anymore). My Podiatrist gave me the second Cortisone shot and I was devastated when it did not work at all. When I called him to report this he said that if I wanted to try again I would have to wait a month. A month! When I actually thought about how long I had to suffer before we could reattempt getting rid of the pain (which was not guaranteed), it seemed like eternity! I was so frustrated! I eventually got the third shot but was advised that if this didn’t work, he would not suggest doing it again but would suggest surgery. I didn’t go back to him for a few years and just learned to adapt to a new pain, one that I liked least of all and was constant. I finally went back after developing what I felt was another Morton Neuroma in my other foot and after years of that pain as well, couldn’t stand it anymore and made an appointment for him to officially diagnose it and then figure out a surgery date for that foot which was way worse than the first. It was reported that the surgery had a 95% rate. I was hopeful even though “exchanging numbness for pain” wasn’t reassuring or even a “fair deal,” but I just wanted to get rid of the pain and if that meant being numb, then that was fine to me. It sucked when I fell into the 5% group and now had pain, numbness, tingling, and shooting nerve sensations which didn’t “hurt” but felt like I was being shocked. So nothing worked for alleviating the pain in my feet (except getting “sicker” and having to deal with new diagnoses and health issues).

So ask me if I like pain. Absolutely not!

Two Wood Roses

Wood Rose

Wood roses are very interesting to me because they’re just… “different.” I never even knew that they bloomed like a flower (the first photo of the yellow flower). I always thought that they looked like “wood” until a few years ago when I wanted to photograph one so my stepfather took me to a place he knew that they grew and I took several photos.

Chronic Fatigue & Pain

There are a lot of different things we go through living with Lupus. Two of my more frequent “companions” are fatigue and different types of pain that travels through different parts of my body. Pain from debilitating headaches, various joint pains, nerve damage in both feet (which my previous Podiatrist adamantly insisted was NOT from Lupus), finger/ toe/ muscle cramps in all parts of my feet and legs, ferocious back pains, etc.

I don’t like to be asked questions about it or any other symptom I may be experiencing because it’s pretty much the same thing just a different day, I don’t want people to judge me or think that I’m complaining, or them trying to give me advice about what I SHOULD be doing (which is just their opinion & hasn’t helped yet), and don’t want to bore them to death. Sometimes I just wanted someone to listen, not try to “solve” my problems but it seems like they feel like it’s their duty to find a solution for me which my doctors haven’t figured out yet or maybe it’s just that they don’t know what to say. I would prefer just a hug.

I’ve tried to come up with the words to describe the pain and fatigue but have yet to find them to more accurately depict what I’m going through. Since coming across all of your blogs on WordPress, I have found something I really needed. To know that there are people who understand these symptoms in the context that only we can understand it as it all stems from Lupus. I understand that our experiences and degree of feeling any specific ailment is still different however it still means so much to me that people who understand are out there. In some posts that I have come across, I have found great definitions, analogies, and words to describe those things that I still cannot accurately put into words.

I was hoping that you could share the way that you describe the fatigue and pain and also any other symptoms that you experience. Any thoughts?

I wasn’t feeling the greatest today so canceled on my sister at first and in the morning had tried to explain to my mom how I felt. I finally decided to drag myself out of the house and see my sister since I can only see her on weekends and there’s no guarantee that I will feel any better next weekend. I found out from my sister that my mom thinks I’m having all of these pains and fatigue because of what she believes I’ve been eating lately. And plans to talk to me about it. Later after I left the house to drive to my sister’s, my mom was looking for me and text that she guessed that I left the house so I must be feeling better. What got to me was her tone. Lately it feels like everyday she is judging me or getting on my back about something. I can’t believe that even she is questioning how I feel and assuming that just because I was able to drive less than 10 miles away, that would mean that all of a sudden everything was perfect. I know it doesn’t sound like a big deal but my “touchiness” about this subject has a background that I wish didn’t exist. 


My Journey Continues…

I decided to look at this rough period in my life not as a “curse” but as a “journey.” I don’t know the answers or the reason(s) why. Why I’m going through this, why me, why now… Maybe there is no reason or answers, and that as human beings, we try to attach meanings or answers to what life throws our way to try to make sense out of something that just does not make sense. But maybe there is a reason and I am on this journey either to learn something for myself or maybe to learn something to help someone else one day. Who knows. And even if there are no answers and everything is happenstance, we can make our life mean whatever we want it to mean, whether it means “nothing,” or whether we want to assign some sort of meaning to it. I choose most of the time to just laugh or joke about what’s going on. If I don’t I was concerned that I would go crazy and get more depressed. I found laughter, trying to find some peace and trying to reduce my stress/ anxiety as more favorable than the alternative of constantly worrying about the worst case scenarios. I know that the only way I can get better is to rest, listen to my doctors, take my medication, change my diet, stay within my fluid restriction (which is SO HARD!), and to try to seek this thing they call peace. 🙂 I need to meditate. I tell myself this every single day but I forget, or I’m “too busy,” or my mind won’t stop thinking and I can’t quiet it long enough, I am too restless as I feel like I do near to nothing with a long list of things awaiting to be done. It doesn’t help that I’ve always been a procrastinator and maybe just a little tad bit lackadaisical. Just a teensy weensy bit.

Today I went to draw blood for my Nephrologist appointment on Thursday. I left him a voicemail to let him know that I did his blood work already, however it was on the day I ended up in the ER and then directly admitted into the hospital and my numbers were all messed up. I don’t think I blogged about my melt down in the ER in front of my Neurologist, the ER doctor, and my friend who stayed by my side through the ER visit up to the first few hours in the hospital. Very embarrassing. I was crying hysterically that I could barely breathe and thought I was going to hyperventilate after they told me that my blood work came back and that my kidneys that had finally started to go up steadily over the past 3 months was almost right back to the point where all of this started up again back in December. I thought it was over already, or that I was either going to have to go straight to Cytoxan or worse as my kidneys back in December were close to the point of needing dialysis. After they got my sodium levels back up and the pneumonia started to subside, my numbers got better (I’m not sure how much better) but at least one of the numbers (maybe my Creatinine level? I’m not sure) was better than it had been in a long time. I’ve learned that Sodium can really mess someone up. And that’s why even though I could never be on a “diet” in the past, I now know that eating a healthy diet and eating enough of certain things (proteins, potassium, sodium, carbs, vitamins, etc.) is so important where before I just didn’t care and didn’t give it a second thought. I guess when one is “healthy” or at least not having crazy symptoms, we sometimes take our health and bodies for granted. Or at least I did. And I know from ending up with Morton Neuromas in both feet that I took my feet, being able to walk, run, snowboard, standing, and even laying down in bed without pain was something I never had to think of and were all things that I “took for granted” without knowing or meaning to because pain like that is something I never knew existed. There came a time when I didn’t remember what it felt like not to have that pain and days I wished that just for a day, or only for a moment, if I could just experience no pain in my feet I would be content. I remember watching the blue people movie around that time (what was it called? Avatar. Lol). I wanted to cry and totally could relate to the guy who in real life couldn’t use his legs and when he was an Avatar all he wanted to do was run like the wind. At least that’s how I remember it. Strange that now that I’m going through all of these other things, my nerve damage doesn’t bother me as much. It’s nice, very nice but strange. I remember when I first moved back home and slowly I was able to walk a little further with reduced pain. The first time I walked 1 mile, then 2, then slowly up to 4 miles. I was so proud and happy. I tried to run. I could only do it in spurts but I felt free. Recently I’ve been able to walk inside the house (even though my side of the house has hard wood floors which used to be the most painful of all surfaces- well besides rocky or uneven surfaces), without house slippers on to absorb some of the pain. I’m not sure if it will come back later since I had suffered for over five years but I don’t concern myself with that right now, I already have other things to worry about at this time. (This is where the meditation part is supposed to come in). 🙂 But back to my blood work… so another order was put in today and I went to the lab to draw blood. After I did that, I walked to the end of the 2nd floor parking lot and looked over the balcony, I scanned the scenery in the background. Green lush trees, in some areas tall green grass, some huge weeds yet still green and might look like plants to someone who didn’t know better, the mountains, even though cloudy because of the rain that has been coming and going. I took a deep breath and thought about how beautiful everything still was in the outside world where I rarely venture except to go to doctor appointments. And only recently have I been able to drive again, freedom once more. It felt good. A sense of peace passed through me. I saw someone that needed help and tried to assist them though I was weak and am still having problems breathing sometimes. I could have left them thinking it wasn’t my problem and knowing she had a phone but I had to stop. Although I tried to help (they had help coming but I insisted we could at least try to see if it was their car battery or transmission) and found out it was their battery, which we had no luck with. They were so grateful and asked if they could give me a hug. I’m not really a huggy type of person and have my personal space issues but they were so sweet and sincere, a hug sounded good, and it was a beautiful day.

Mia got a wonderful bath & mini hair trim today and she’s sleeping on the couch right now all cozy-looking waiting for me to go to bed. I took her to the dog park the other day and talked my sister into coming with us to the dog park, so she and my two nephews (4 and 9 years old) came to run around the dog park with Mia. I was finally able to walk and run just a little which was nice since I hadn’t been able to even stand for a while when I had bronchitis and then pneumonia. So there’s always good things in life when you look for it and don’t just concentrate on all of the negatives. It’s a big lesson for me that I’m still learning and sometimes have to make greater efforts on some days than others but at least now I’m more aware and know how to shift my emotions back to a positive path. I hope to take her to the dog park tomorrow and to the one pet store on the island that will let you take your dog inside with you. Actually at this time I think it’s the only pet store. I know that one closed at some point since the last time I was there about a year ago. I remember when I got home from the hospital, she was soooo happy to see me. I was so sad because I missed her so much and my mom said that it seemed like she wasn’t eating, or at least not eating as much as usual. I hoped she didn’t think that I abandoned her. But after I got home and we said our hellos and I gave her some treats in exchange for her showing me her tricks, she started eating and drinking water so all was well.

As far as my health, I’m just trying to do what I’m supposed to except honestly it’s very difficult to stay within the 64 oz. of liquid a day, especially because I need to count liquid in food and it’s so hard to look up every single thing so sometimes I just want to eat dry stuff like soda crackers (which has no nutritional value at all). I love to juice and make my own smoothies but now I can’t, I have to make decisions. Do I really want a smoothie and only be able to drink 32-48 oz. of water or Powerade (now that I was advised by my Rheumatologist that I can’t drink my Vitamin Water Zero with Stevia but need to drink something with electrolytes (sodium)? Do I really want soup or do I want water? How many grapes, pineapples, or other fruits can I have and still have enough liquid to last me the day, especially since I have to take so much medication? My doctors can’t give me a definitive answer as to how much I can drink if I “exercise” and sweat or if it’s an especially hot day. I mean I don’t want to pass out from dehydration because I’m being all strict about my water intake. So sometimes I have a bad attitude and if I go over my liquid restriction, I’m like, “whatever” and then just drink more than I’m supposed to because I was depriving myself all day. Yes, I know, I will try harder. I keep thinking I figured out why I can’t do it, will change whatever that factor is the following day, and then still end up going over. Today was a very hot day and I overexerted myself at least twice and it was so hot today but like I said, I have no idea how much more water can I drink at times like that? Maybe I’ll see if I can find the answer in research. I’m getting a little tired of researching though because sometimes the answers cannot be found. I’m thinking about finding a good Lupus message board and joining it. Sometimes I think it’s better to just read what other people have asked in the past or post your own questions where others who have gone through the same thing can give you some answers that they found or tell you what happened to them. I had joined a couple message boards over a decade ago but at this time I believe that one is completely down (or they at least only send out newsletters which you have to download and I don’t download anything) and the other one I have forgotten the name of it.

Fun Night with the Girls from Work

Better days. Our bowling “team” for work. It was a fun night.

Fun Hair

Since I was going to be out of work for a little while I decided to cut my hair shorter and color it.