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. 🙂

The Very Inspiring Blogger Award

very-inspringaward

I was very surprised and humbled when I received this award from breakdownchick at Labeled Disabled. It encouraged me to keep writing because I didn’t think that I was inspiring nor encouraging. I felt like I was just complaining about everything and being negative so I stopped writing for a while. I was especially honored because I think that Labeled Disabled is an amazing blog written by a brave and inspiring soul. I enjoy reading her posts and wish that I could share even half as much as she does. I still  hold back many of my thoughts and feelings because unlike her, I am afraid and still haven’t confronted many of my experiences that I have chosen to suppress for now, knowing that at some point I will have to face my past memories which still affect my current life. If you haven’t visited this blog yet, I highly recommend checking it out.

Here are the rules for accepting this award:

  • Thank and link the amazing person who nominated you.
  • List the rules and display the award.
  • Share seven facts about yourself.
  • Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
  • Optional: Proudly display the award logo on your blog and follow the blogger who nominated you.

Seven Irrelevant Facts About Me:

1) I am half Japanese and the other half consists of Scottish, Irish, German, and British. My Great Grandmother on my Mother’s side was a picture bride. So in Hawai’i, my generation is considered Yonsei (which is the 4th generation).

2) I travelled a lot since I was 6 years old. Mostly because my parents divorced when I was about 4. The first long trip my sister and I took was to South Carolina to visit my dad during our summer breaks. We’ve also visited many states in the US and Australia and New Zealand.

3) I have lived in four different states: Hawai’i (on the islands of Kaua’i and O’ahu), South Carolina, Las Vegas, and Colorado. I finally returned home on my mom’s birthday in 2012 and am so happy to be back where the majority of my family lives.

4) I dropped out of college at UH Manoa in my last semester of my Senior year- one of my biggest mistakes. I did go back to school and graduated from UNLV in Las Vegas but I had to take way more than 4 classes since they didn’t carry over all of my credits and had other requirements. It was worth it even though I do not use my English degree.

5) The most I have ever been hospitalized in a four month period was three times (December 2013- March 2014). I do not like green eggs and ham, I do not like them Sam I Am.

6) I really like office supplies. I don’t know why but I get really excited when I buy them.

7) I have issues with people being in my personal space and get agitated. One random example happened just now. My step-father just came to my side of the house and was looking by my sink/counter and started to walk away. I asked him if I could help him find something. He said no, he was looking to see if my mom brought a small white dish over and laughed. Arrgh. (So yeah, since I moved home I’m living with my mom and step-father. I was going to move out late last year and then had a major Lupus flare and couldn’t work for a while. Now with the extra medical bills (hospital, holter monitor, doctor visits, etc.) and using my credit card when I was on a leave of absence, I will have to wait for a while. Then I will have my privacy and won’t have to worry about my step-father sticking his head in my bedroom door to see if I left and Mia (my dog) is at home by herself, him not listening to me and over feeding Mia snacks all day, my mom coming into my room and peeking in the bathroom to ask what I’m doing when it is obvious since I am sitting on the toilet, and all that good stuff. 🙂

Fifteen Inspiring Bloggers:

I don’t follow many blogs so I won’t be able to come up with that many. However the ones that I list are definitely awesome!

1) Labeled Disabled (I know she nominated me, but she is truly inspirational- so hurry up and visit her blog! She writes about her life experiences, “mental disorders,” poetry, etc.) 🙂

2) Nitya Nata (Another amazing blogger who writes about Lupus, other health conditions, and her trip to Europe- loved it! And more!).

3) Flux and Flow  (Jasmine is truly inspirational and has a variety of topics from Lupus, Café Monday (random excerpts from her journal), travels, current events, etc.).

4) Lupus Really Sucks! (I find this blog about Lupus inspiring because she writes about the disease, how it affects her, and portrays Lupus for what it is. Lupus does suck! A lot!)

I know I’m missing some but I just can’t think right now. This has already taken me at least an hour if not longer, with breaks in between.

A Hodgepodge of Life Lately

Last Thursday I went to my follow up appointment with my Nephrologist. I was excited and scared at the same time. I was hoping that my labs were still looking good and that I could continue to wean off of Prednisone (I’m down to 10 mg/ day now) and hopefully stop taking some of the other medication. Half of my co-workers in my department are sick and I’m worried about catching what they have and possibly going through another round of hospital visits.

He handed me my most recent labs and as I looked at it in disappointment (my kidney function was a little bit worse and the protein in my urine was a little higher) he told me that everything looked good and was “stable.” I tried to reassure myself that my labs would get better again and that maybe the change wasn’t as significant as I thought it was. He also said I could stop taking Sodium Chloride unless my Sodium level went down again. This, he said would help reduce my edema and I could add salt to my diet instead. I liked that idea much better than taking pills. At the end of the appointment he told me that he would see me again in three months. “So I still have to take CellCept?” I asked. He explained the process and that I would probably be on it for another two years. He then said that if I wanted to, I could reduce it a little. Instead of 3000 mg/ day, I could take 2000 mg/ day. I happily accepted this especially since it’s an Immunosuppressant drug and I work in a clinic surrounded by sick people.

In the past 2 1/2 weeks I have been picking up a co-worker to bring her to work because her car is in the shop again. It’s difficult for me to wake up earlier to pick her up on the work days that I usually sleep in a little longer. The days that I start earlier than her, she will have her husband or someone else drop her off at work and then she’ll ask me to wait for her to get off (which is usually another 45 minutes). She’ll usually wait until the end of my work day to tell me, after I’m already tired and looking forward to going home. Hardly anyone knows about this but the few that do are getting upset at me because it’s been so long that I’ve been giving her a ride and they’re upset that I cannot tell her that I’m not going to do it anymore or ask her for gas money. I let her borrow my car while I was on my Leave of Absence from work for a little over a week, maybe two weeks and she didn’t fill up my car with gas, not even fill up what she used. I’ve had to fill up my gas tank twice already.

I am exhausted yet happy that I didn’t sleep my weekend away like I usually do. After another hectic work week, I was able to attend my nephew’s football game and ran some errands with my mom, and then today I was able to go to the movies. We went to see “Maleficent” in 3D and enjoyed it along with my favorite “movie popcorn.” After the movies, my mom said she needed to go to help her Aunty pack for a vacation so I sat outside on a bench, trying to stretch out my back that has been killing me. It feels like I need someone to crack it for me but no one will do it except for one person at work. But I don’t want to bother her about it every day. Today I didn’t feel well because of at least three different things and told my mom that I was tired. She said, “Well maybe you shouldn’t have started to take less CellCept then.” I got really irritated because what did that have to do with anything? I asked her, “Do you even know what CellCept does?” She asked, “What?” I didn’t even want to answer that question, especially since she already “knew” or else she wouldn’t have made such a statement, right?  She then said, “It’s a Cancer medication?” I said, “No. I think you’re thinking about Cytoxan, which is a Chemotherapy drug.” I was over with the conversation as soon as it started. My own mother still didn’t understand anything about Lupus or my medication after all these years. She’s always jumping on my back about every single thing that I do or don’t do yet she doesn’t even know what I should or shouldn’t do. I will forever be “tired” or “exhausted” so why even mention it? Especially when this is the type of responses I get, including, “You’re always tired.” If anything, CellCept has caused people to experience more fatigue.

I’m excited about this coming work week. We have Wednesday off (King Kamehameha Day) and Friday is payday along with the upcoming weekend.  🙂

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I just got off the phone with a good friend who I could tell had been drinking. In general, I despise speaking to drunk people. My father was an alcoholic and a “drunk caller.” It was really difficult to deal with him throughout the years with all of his bitterness, anger (mostly at my mom for divorcing him because of his drinking), and him repeating himself over and over again. When I was still in high school, there came a time where his anger turned towards me and I couldn’t handle it anymore. I finally had enough and hung up on him. It was something that I had wanted to do on many occasions but just couldn’t for some reason. After this episode, I wrote a short story called “The Man We Loved.” But I did still love him, I just couldn’t deal with it anymore. I gave him another chance which he again ended up ruining and I didn’t talk to him for about ten years. I had never seen an alcoholic as bad as he was until I met S. Again, I love S but at times I cannot talk to her. I finally told her a month ago that I can only talk to her when she’s sober.

She just called me and I silently listened to her tell me the same story over and over again. I tried not to get angry or to be abrupt about it. I wondered if she would give me a chance to talk as most of the time she doesn’t when she has been drinking and everything that comes out of her mouth is so angry. It sucks the life right out of me. After 30 minutes or so, she asked me how my doctor appointment went. “Well,” I said, “He took me off of the Sodium pills and told me to add salt to my food instead…” That’s when she interrupted me. Telling me that I cannot have French fries (who was talking about French fries?), I should be eating stuff like Kale, am I f—k’n kidding her that my doctor told me to eat salt, that he doesn’t know what he’s talking about… She started to talk about a diet that she wants to impose on her mom, that I should grow my own food and have a garden, etc. I tried to stay silent again, listening to her tell me what I should and shouldn’t be eating as I started to get more and more upset. She said that my doctor is an idiot. She asked me what have my doctors told me to do about my diet. I was silent for a while because sometimes when she asks questions, she will jump in as soon as I begin to talk and then it’s her turn for about 20 minutes again saying the same things over and over again. She asked me again so I told her in an upset tone that they have told me to limit my liquids to 64 oz. a day and that I can add salt to my diet unless I’m feeling “low-sodium” again. She asked if I was upset at her, and not to be upset with her. I told her I would stop if she would stop telling me what I should be doing. She agreed and then started going off about my doctor and the salt again! I told her I had to take a shower and we both said bye. Maybe I should really go and take a shower. Sorry for venting. I’m over talking to family and friends about anything that has to do with my Lupus or doctors appointments. It’s not worth it.

I want one of these!

I want one of these!