Pain from Morton’s Neuroma and Plantar Fasciitis= Good Times!

Colorado Pre-Surgery

Colorado Pre-Surgery. I love my crazy socks. Since it was a slow day I decided to pull up my pants and take a pic.

As you already know, the pain from my nerve damage is back! Because I had a “break” from it, I now realize how horrible it is and that I had become somewhat “accustomed” to it. Not only do I have this excruciating pain in my toes and balls of both feet, but I also have pain in my heels which I am assuming is Plantar Fasciitis (probably from the way I now walk because of the pain and not being able to bear my weight on certain places on my feet). I do not really care what it’s called, it just hurts! Lately I’ve been at a “9” on the pain scale (and I have a high pain tolerance). The reason I won’t give it a “10,” is because I’ve experienced pain on a whole new level numerous times since I’ve had Lupus and just when I think that pain could not be any worse, something else will prove me wrong. To think that pain can be any worse frightens me a lot!

Recap: I first experienced this very intense pain in my left foot somewhere around 2006. I just dealt with it because I had become used to going to different PCPs and Rheumatologists for answers to new symptoms and pain that began to introduce themselves into my life and was usually brushed off. Their answers were usually, “I don’t know,” or “It’s probably just the Lupus.” Really? That’s it? Not only did they not know and go on to the next subject but they wouldn’t even try to offer any allevement. It was a waste of my life and money so I would only go to my doctors for their follow up appointments or if something was exceedingly bad. I figured that there was nothing that could be done. I was referred to a Podiatrist who gave me a few options and not wanting to undergo surgery, I opted for the horrid cortisone shots. Not only was it the most painful shot I’ve ever had in my life but it didn’t work after the first shot! It was a “miracle” shot until a month later when the pain returned. The next two shots didn’t work at all so I just tried to deal with it as the only other option was surgery. Around 2008, I had the same type of pain in my right foot and it was worse than the first Morton’s Neuroma. I dealt with it, gritting my teeth and making tight fists as I dug my fingernails into my hands. I had heard that if another part of your body was in “pain,” then it would take away from other pain one may be feeling. (It didn’t help). I didn’t have to be on my feet to feel the pain, even if I was sitting in a chair, or just laying in bed, the pain was always there. Many nights as I laid in bed, I couldn’t remember how it felt to not have this pain. I wished that I could have just one night without pain and promised myself that I would cherish every second of it. When it became much more than I could bear, I went back to the Podiatrist, finally willing to have surgery on at least the right foot and eventually later I would do the same for the left. The surgical plan was to cut the nerve in my foot which would leave my foot numb. I was exchanging pain for numbness. Not the most favorable plan in my mind but I just wanted it to go away!

I waited until the following year to schedule the surgery due to work. They didn’t have anyone to cover my position while I was gone, so I waited until I just couldn’t stand it anymore and told my manager early in the year (late January) that I needed to schedule this surgery as soon as possible. She told me that she was using her vacation time in March and that I would have to wait until April to schedule it. I was pissed! I could not believe that she would make me wait another three months when she knew I had been dealing with this for so long! In April when it was time for surgery, I was extremely grateful that my mom came to help me for two weeks since I was living alone in Colorado. All of my friends who said they would be there to help didn’t visit or even call to see how I was doing except for one person who brought me flowers after I returned home from outpatient surgery.I really appreciated her thoughtfulness. I lived on the second floor of an apartment complex which made it difficult to go out to buy groceries or go to doctor appointments. I couldn’t drive (something I did not think about until after surgery) so my mom’s willingness to fly out to help meant so much to me. I didn’t even have to ask her, which I wouldn’t have because of the inconvenience and the price of airline tickets.

Chances of the surgery being a success was 90%. Pretty good, right? Well I fell under the other 10%. So not only is my right foot numb and tingly but it still hurts like hell! One morning within the first week after surgery, I woke up in so much pain that I broke down and cried. I have only cried twice from pain in my life (excluding when I was a child. I’m sure I must have cried then) and I was also way beyond frustrated. I couldn’t stand up and was on the ground. I had to use the bathroom but didn’t want to ask for help and refused my mom’s offer as I was determined to do this by myself. It was harder than I thought as I tried to drag my body on the floor towards the bathroom. Then when I got to the toilet, I could not get up. Finally I let my mom help me. I’m very stubborn and proud, I did not want to admit “defeat” or that I required assistance to do something so simple at the age of 35.

I had mentioned the pain in my feet to at least two different PCP’s, two different Rheumatologists, a Podiatrist, and an Orthopedist. Because no other options were mentioned or it took so long for new options to be introduced to me, I came to the conclusion that this was my lot in life. I thought that nothing could be done about it, “it is what it is,” and I would just have to deal with it. Now that the pain has returned after it miraculously disappeared for three months, I realize to live like this is absolutely asinine! Something needs to be done and I’m over it! I mentioned it to my nurse last Friday when she was in my department using our fax machine. She told me to send a message to my doctor. It was good that she was there and told me to email him or I wouldn’t have. She made me feel like this is a legit thing to discuss more in depth with him. She asked if I had heard of Gabapentin. I then remembered that I did. When I was still in Colorado, my PCP finally mentioned it (after years of telling her how bad the pain in my feet was). All she did was refer me to a Podiatrist and then an Orthopedist. When she mentioned Gabapentin, she wanted me to first try two other medications before talking more about it. I was angry that she failed to mention anything (even the other two meds) earlier. I was thinking, “Are you kidding me?” Because apparently there was something out there that could possibly help me and “only now” was she mentioning any of it. I tried the other two medications first like she suggested hoping that it would help but began to experience more pain. I left a message with her receptionist about it and she called me back to say that it was probably one of the new meds and told me which one to stop taking. I continued with the other but stopped that one on my own when it wasn’t working either. Somehow the option of Gabapentin had slipped my mind. It was probably because I was depressed and also stressed out at work and in my home life.

So on Friday I emailed my current PCP and asked him what he thought about Gabapentin. He emailed me back and told me to set up an appointment to see him to discuss the options of either Lyrica or Gabapentin. I tried to research both of them but was overwhelmed with the information, pros and cons, and side effects which I may or may not experience. I figured I would just speak to him as soon as I can get an appointment. I am looking forward to my next visit with him hoping that I can get some relief from at least the nerve pain. I’m also wondering if the pain I sometimes get in my left shoulder that lasts 3-5 days is some kind of nerve pain as well. So far none of my doctors have an answer for that one.

My PCP is leaving our clinic (it’s so convenient to be located on the same floor right next to his) and I really like him. He will still be practicing but will be on the other side of the island. If I was on the mainland, the drive would not be so bad, however on an island with one main road where one accident can majorly impact traffic on the whole island and just the way that traffic flows, it’s not an ideal drive (especially since I do not like to drive). However I am willing to drive to see him because he knows me, my condition(s), listens intently, answers my questions and if he doesn’t know the answer he will either consult other doctors or refer me to a specialist who may be able to help, and I am comfortable to tell him anything. I don’t want to take my chances with another doctor. I told him on our last visit that I wanted to keep him as my doctor if it was okay with him and not to scratch me off his list. He said that was fine, he wasn’t going to drop any patients that still wanted to see him, and that he learned a lot about Lupus from me. I told him he would be a pro soon enough. 🙂

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.

Prednisone

Let me just say that I HATE Prednisone. I know that some do not like that word. Hate. “You don’t really ‘hate’ *such & such* a thing.” Yes I do. From the bottom of my heart. I like to try to be positive & perhaps tomorrow will be a better day since I finally fell asleep sometime after 5 am this morning & woke up at 3 pm with my mom scolding me again as if I’m a child. As she also did last night. We both seem to be getting on each other’s last nerve lately & the Prednisone doesn’t help. I’m normally moody & impatient anyway. Something I don’t like to admit and try to hide under silence or a smile while internalizing all of my feelings. However with feeling as crappy as I do, I sometimes lash out or have brief episodes of “Tourette’s.” It is embarrassing afterwards but I get in this “zone” where I don’t really know what’s going on or what’s coming out of my mouth until it’s over. I am not so proud that I won’t apologize if I was wrong or even if I don’t feel like I was wrong I will sometimes apologize if I hurt someone’s feelings. Especially if that person is my mom who is always there for me and who I have probably worn out by now with my health condition(s) over the past four months. But by that time it’s too late. Apologies can only go so far and doesn’t make everything better. So then comes the guilt and depression. Along with everything else I must worry about, it is all too much for me at times. Surprise! It’s easier for me to just “forget” and not think about it. At least it makes everything easier for the moment. I tell myself I won’t do it again and what do you know? It happens again.

I first was introduced to Prednisone back in 2001 when I was officially diagnosed with Lupus and Membranous Glomerulonephritis. I was seeing a handful of doctors and it felt like a full time job. I was doing that along with all kinds of tests & procedures, going to the university full time, and working full time, sometimes overtime to make up for the money that my “significant other” was gambling away faster than I was making it. I was uncomfortable aside from the constant pain that never settled in a single place in my body, horrendous headaches from hell that would not go away even with the two medications that my Neurologist prescribed (Frova worked some of the time, maybe 20% of the time) but my insurance didn’t cover it and I couldn’t afford to pay over $300 for a monthly prescription so my Neurologist would give me samples and continued to prescribe me Maxalt. I don’t even know why I kept refilling it as it didn’t help at all. It was apparent that he was not going to try to give me anything else to try and had “run out of ideas?” So I guess I was just taking what I could get in the hopes that it would someday magically work. The Prednisone made me so much more exhausted than I already was on a daily basis, I was getting so big that I couldn’t fit in my clothes anymore which made me depressed, my face became huge and round (I would say it was like a dinosaur’s head), my appearance really changed and bothered me a lot, I was very depressed, scared because I didn’t know what was going on with my health, just that I had two diseases “all of a sudden” which had no cure, and it didn’t help that I didn’t have a lot of emotional support by my family and friends. They didn’t understand any of it. They could see that my physical appearance had changed but other than that, I acted “normal,” I could still go to school and work at that time, I didn’t “look” sick, just altered by medication… But I was never one to complain about every single thing that I felt or was going through. Especially when I would share and they still didn’t understand and used it against me or accused me of making things up, or “conveniently” being “tired” to get out of going out for an all day event in the sun, or that I had a low pain tolerance if I needed pain medication and was in pain every day. Why talk about it anymore? Everyday was the same as the last, just with slight variations. So if someone asked how I was doing, I was “good.” I was “fine.” It was simpler and still is. Prednisone made me grouchy but maybe I was mostly just exhausted and physically and emotionally taxed. I was in a bad relationship and under a lot of stress in every aspect of my life. Needless to say I was very unhappy. At least this time I don’t have all of those stress factors in my life (just new ones). 🙂 The good thing is that I moved home a couple of years ago. It would’ve been so hard to go through all of this completely alone if I was still in Colorado. It made me sad that my good friends stopped calling, coming by to visit, and stopped asking me to go out. I understand that sometimes I had to cancel plans and tried to explain with an apology because I was taught to keep my word, if I said I would do something or made a plan or obligation, I should always keep it. I disappointed myself when I could not do this anymore. So I stopped making plans to avoid feeling bad. I told them to please continue to invite me because if I felt okay, I would definitely want to hang out. But it didn’t work out that way. I wasn’t fun to be around anymore or cancelled one too many times. So I shut myself off from everyone and just did my own thing, except I was in that relationship where I would get yelled at every single day for hours. The same old thing repeated in different ways over and over again like a broken record. Once I finally yelled to shut up! That was a few days after my gall bladder surgery. I then got hit with a pillow in the stomach. After my kidney biopsy when I was trying to open the bedroom door to escape another cornered “battle” where I just got yelled at over and over again, I was kicked right where I had my biopsy and fell to the floor. “Don’t be so dramatic!” he said. As soon as I could get up, I reached for the door and got out of there. “It was an accident,” he said about both incidences. Hmmm. Accident. Most of the time I kept my mouth shut because I have a “smart” mouth but confrontation and unnecessary arguments I do not like and do not have time for. Especially when I’m “sick.” Once I was finally off of the Prednisone, I started to lose weight. I was so happy when I could finally see my facial features again instead of one big dinosaur head, I slowly could fit in all of my old clothes and then they eventually became baggy, I started to feel my head clear up, and I felt so much better. I told myself, “Never again.” And I declined Prednisone up until January of this year.

Butterfly

I love flowers and butterflies. They are my symbols for peace & happiness. Kind of ironic, huh?


A few years after being diagnosed, I was officially in “remission.” At first I thought that meant that the disease was dormant/ inactive and would not affect me. I guess it wasn’t as bad as when my kidneys were acting up and the Lupus was active but I did still have the pain, the headaches had gone away, I was only on a few medications and no longer felt like a “pharmacy,” but was still tired all the time. But after going through everything that I did, I would opt for remission. It made me kind of sad when the people at the pharmacy started to call me by name and knew who I was. I ended up with two Morton Neuromas (nerve damage), one in each foot (just so that the other foot wouldn’t feel left out I guess). I’ll talk about that on a later date. Various joints would hurt at different times, the winter months or when the weather changed seemed like the worst as far as pain, I would get this pain in my shoulder that was so bad that sometimes I couldn’t even move my arm (I still don’t know what that is), and various other things that I cannot recall off the top of my head as they all became my “norm.”

I don’t know what happened but after we got home from my sister’s birthday get together on December 13th, I was laying on my bed playing games on my phone to pass the time as I was too tired to do anything else. All of a sudden it felt like my throat was closing up and I was having trouble breathing. So I sat up. I could breathe a little better but was still having problems. I knew that any time someone has trouble breathing, they should go to the ER but I could still breathe, why waste my time and money to go to the ER for nothing? But what if I should go in? What if I don’t go and I stop breathing in the middle of the night? I didn’t want to wake up my mom so I was debating whether or not drive myself to the ER. After an hour of debating, I was too tired to drive and decided to go to sleep. In the meantime I had text my mom just in case I drove myself and wasn’t home by the time she woke up, she would know where I was. She was mad at me the next day for not waking her up and since I was still having issues breathing, she brought me in to Urgent Care (which I knew they were going to send me to the ER per protocol). The ER doctor did some blood work, a chest x-ray, EKG, etc. An Echo Cardiogram (I think, I can never tell the difference between the EKG and Echo or if those are the same tests or what) was ordered but a technician wouldn’t be in until Monday (it was Saturday). The ER doctor came in after he received all of my results. He asked me at what point was I told that I had Congestive Heart Failure. I looked at him surprised because I did not know. He told me it was in my charts. I thought back to when I was first diagnosed and living in Las Vegas but could not think of any time that someone told me that I had CHF. So I found out that day that I had CHF, my kidney function had rapidly declined in a fairly short amount of time and was closer to dialysis than to anything else (which my kidneys had always been my biggest fear), there was fluid in my lungs, my blood pressure was sky high, and I had bad edema in my legs because my kidneys weren’t doing it’s job. I called it the “Bizarre Love Triangle,” knowing they were all connected somehow and somehow I needed to make something stop to halt the damage that all three things were doing to my body. He wanted to admit me to the hospital until at least Monday for the ECHO and go from there. Actually I didn’t know how bad my kidneys were doing until a week and a half later when I established care with a Nephrologist. I’m glad I didn’t know in the hospital because everything else made my world turn upside down and inside out. I had really hoped that since I was living a more positive life, was doing so well in many aspects of my life, and was taking all of my medication again like I was supposed to even though I was in “remission,” I didn’t know what I had done wrong or where it all went wrong.

Since then it’s been crazy. I had to get another spinal tap the last time I was in the hospital last month which I was so scared of because of my first awful experience when it took forever, hurt, I could feel nerves being pinched in my thighs, it was painful, uncomfortable, and afterwards spinal fluid was leaking for days and I had the most horrid headaches that I had never experienced before in my life and never want to experience again. This time it was better. Quick and not painful (as I don’t mind needles anyway). My medication is hard to keep track of and I still don’t know them all by name. I’ve been in the hospital three times in the last four months (twice because my sodium dropped so low), found out I still have edema but it’s manifesting itself on the inside of my body that’s why it seems like I’m not retaining water because you can’t see it in my ankles and legs anymore. I get bad headaches that last for days, all of my “normal” symptoms are way worse than usual that I can’t even work so I’m on leave right now but have to get better by May 1st and go back to work on the 2nd. I was hoping I’d be better by then but I don’t know. I had to wear a holter monitor for 2 weeks per my new Cardiologist to “record” any irregularities I noticed during that time. I got to do a CT scan of my brain again (how fun, being claustrophobic), but they had music, Valium, and an eye mask so I was good. And he let me keep them. I got bossed around by a nurse that was younger than me, almost was given another patient’s meds as a frantic nurse was looking in the wrong person’s chart and luckily I caught it because she mentioned that the hospitalist wanted to give me Motrin which I knew could not possibly be correct because of my kidneys, my arms looked like I was a drug addict that loved needles, and all kinds of fun stuff. Of course most of the tests show nothing. They’re always like that. I got used to the doctors giving me shrugs, saying, “I don’t know,” or “It’s just the Lupus.” I didn’t like that there were no answers as I had always thought doctors always had the answers. It was and is frustrating to say the least. One thing that made me angry was that I was having edema for a while. The first time was back in March of last year. And to my surprise, it stayed there for days so I was able to show my new Rheumatologist. He pressed on it which left a big indentation that ever so slowly regained it’s huge shape. I had done that a lot, played with it like silly putty. “See this,” he asked as he pressed down on my leg. Yep, I’m not blind, I already know it does that. (I was thinking this, I wouldn’t say it out loud). 🙂 “You’re retaining water.” Okay. And I guess that was that. So I thought it wasn’t a big deal since he just blew it off and was more concerned about me being a cigarette smoker than anything else. The edema would come and go every so often, always lasting between 1-3 days. Then it started to get really bad in December, and the headaches started (it was so bad that I would need to call in sick for work and I never call in sick). The edema got so bad that you couldn’t see any of the bones in my boney feet, I had no ankles (just cankles), it went all the way up my thighs. It was really bad but I thought it wasn’t a big deal. Until one day one of the nurses I worked with said that I looked pale lately and she had seen my legs (I showed her), and she said that my face was bloated too. So I went to my doctor who immediately ordered blood work and stuff that the Rheumatologist should have done. My blood work jumps around so much that I can be fine one day and the next day something else is wrong. I am now officially anemic and my red blood cells and hematocrit has been low lately. My doctor was thinking about doing a blood transfusion but my Nephrologist wanted to hold off on it. He prescribed me some Iron last Thursday when I saw him. “Finally, I thought. I’ve been asking for something, anything that could possibly give me the least amount of energy or tell me what to do to get energy. I’m not sure if the Zinc will work but it’s worth a try.

The most important thing that I do right now is the hardest thing for me to do. I’m under liquid restriction for what I believe is for the rest of my life. 64 oz. I’m used to drinking 3-4 times as much as that. I am still failing miserably daily but I am drinking less than I used to, however I know that’s not good enough. My Nephrologist told me that when I was in the hospital this last time, I had enough water in me to last me six days. So I have to try harder until I finally get it and know how to ration my liquid throughout the day. My blood pressure in the meantime is still high but better. A couple of times it hit the normal range which made me happy. 200/114 is not good at all. I never had problems with my bp before.

I had one of the biggest scares of my life in December when I landed myself in the hospital for several days, sleeping most of the time because of the headache that wouldn’t go away, and the Nephrologist wanted to put me on Prednisone and that was the only option, I had to do it. He assured me that a small pill wouldn’t make me “fat,” that it’s the person eating, not the pill. Well I beg to differ because I’m not eating any more than I usually do and even though at least 10 lbs. is water weight, I have still gained weight and my face is huge. It’s not a dinosaur head this time, it’s a “Muppet Head.” Yea, I cut my hair super short at the wrong time because my head became bigger, like a Muppet. 🙂 I don’t know why saying those things make me smile or makes me feel better. I think a part of me would rather say that to someone that I haven’t seen in a long time than for them to think it or even say that I gained weight or that my face looks swollen. As if I didn’t take notice. My Rheumatologist said I could start taking 20 mg a day instead of 30 mg of Prednisone but I still don’t see a difference. I asked my Nephrologist when did he think I could start taking less Prednisone and also start reducing the CellCept and some of the other meds. He said we would discuss that later, he wants me to do a few tests first and see me in a month. A month seems too far away. I want to be able to reduce my medication sooner. He had at one time discussed Cytoxan with me (in case the CellCept/ Prednisone/ and other meds didn’t work) but he hasn’t mentioned it again so I’m crossing my fingers.

I know there are others out there with Lupus who are taking Prednisone. What is experience with it? How do you feel about it?