A little update

It has been almost a year since I last posted on here. For that, I am sorry.

What goes through my head nowadays is how do you cope with a chronic pain and when you cannot cope with it, how do you not let it affect the people around you? I know my family says that they understand that I am still going to be in pain and they are here for me. But we all know that if someone sounds like a broken record then people get tired of it. I feel like I am to that point with the family and friends that have helped me with my health issues. So I try not to make a big deal about it and when it is too unbearable and I cannot help it then they will know. Otherwise, I have begun keeping my mouth shut. This way if we have something fun planned or we are just enjoying each other's company, I won't ruin it by curling up into a ball and make everyone uncomfortable.

Since I last wrote I was diagnosed with a neuropathy. A neuropathy is damaged nerves in one part of your body (basically). However, since I suffered from MALS for so long, my neuropathy covers my entire stomach and I have days where I cannot where jeans because when I sit down the hard material pushing against my stomach will increase the pain within seconds. It is crazy. So, now I am released from Dr. Thompson, but have been seeing 2 different types of pain management doctors. The first one is Dr. Rastogi, and let me tell you, he is awesome. Dr. Rastogi put me on Neurotin (generic form is Gabapentin), and started me at the lowest dose and each time I go back, depending on how I have been doing, he increases or decreases the dosages. Unfortunately I have not had the opportunity to have him decrease the meds but at one point in the early fall I had gone an entire week without any pain! How crazy is that?! I loved being able to go back to a doctor and finally feel like I had some good news to report back to them. Sadly, that one week is all that I have been able to go without having any pain. In fact, the pain has increased so much that I had to call Dr. Rastogi before my next appointment to have him increase my dose of medicine over the phone. Due to this fact, I am more irritated and upset than I have been in awhile, because I feel like this might be a bad sign. I say this because it did seem like it was getting better and now it feels like I am regressing. If this medication does not work then he will try another. If worse comes to worse, and he has tried all other options he is going to put in a nerve stimulator in (surgically) next to my spine. This stimulator will send a signal to break up the pain signals if I start to have pain. Essentially reducing the pain about 50%. The other doctor is Dr. Fields and she helps me "manage the pain." I go in with her for 30 minutes and she teaches me techniques to use when the pain starts to come. Hopefully I will not have to show I am in pain because I can do these little tricks she shows me. At my last visit with her she taught me self-hypnosis, by the end of the visit I was so dizzy and nauseated I was scared to stand up. She said that was normal and I just need to practice.

I go back to both of these doctors in a couple weeks for another check up. My worse fear is having them tell me that something else is wrong with me or that they can no longer help me. Dr. Rastogi has told me that it could take a couple years for the neuropathy to go away, but he does think it will go away! Which is exciting! My first time meeting with him he said it was something I was going to have to live with.

A couple posts back I mentioned that I had to learn to take into account the people around me and how they are helping me out as much as I can and I need to cut them some slack. I now live a few hours away from my mom and when I am by myself I find myself desperately wishing she was here to take care of me. She did it for so long, I just know I feel more comfortable knowing she is there. I know many of the older girls in the support group feel the same way. One woman had her surgery 15 months ago and she just found out she is pregnant. Her doctors' first reaction was scared for her, they do not think she should follow through on the pregnancy because they do not know if her arteries can withstand the pressure of giving birth, and because she has been trying to deal with a neuropathy as well, they just do not think it is a good idea. Even if the neuropathy goes away before the baby is born, doctors do not always suggest doing a c-section because there is a greater chance for the neuropathy to come back since she has already had one. Its sad because all the members of this group are young, she is the first to get pregnant and she really does not know what to do and unlike the other times, none of us have been in the situation to say "we know what you are going through." In all honesty, we don't.

This is the deal, there have been those lucky few who have the surgery and within a year they are totally fine and on the go. Then there are others, who are told the surgery will solve the problem but it doesn't. Just like everything else there are consequences to everything and while the surgery was a good thing, it also brought some consequences that can't be helped. Unfortunately I have fallen into the latter, but that is how it goes. I am determined not to let this get the better of me.

 I have decided I am no longer missing events and I had planned on going to just because my health is creating an obstacle for me. The best way to move on is to fight back and I feel I have been doing a pretty good job of this. This idea of fighting back is what is keeping me focused on my goal to raise awareness and eventually raise funds for those who cannot afford all the doctor visits and surgical tests necessary. Every night I do more research and make phone calls to doctors across the country, so that I can get the data necessary to actually get this plan into more than just the researching stage. Hopefully, I can move to the next stage soon.

Will post again soon.